Tuesday, 28 July 2009

Day 219 - Hemicrania Continua

“Hemicrania continua is a rare type of chronic daily headache where the pain occurs on one side of the head. Although the pain will vary in intensity, it never completely disappears and tends to be mild to moderate with occasional periods of intense pain.
The following diagnostic criteria are given for hemicrania continua; headache for more than 3 months fulfilling all of the following characteristics:

* Unilateral pain without side-shift
* Daily and continuous, without pain-free periods
* Moderate intensity, but with exacerbations of severe pain

The condition exists in two forms known as continuous and remitting. In the continuous form, headaches occur daily with little or no respite, often for years. In the remitting form, headaches may occur regularly over 1 to 6 months, separated by pain free periods of several weeks to months. Pain may occur as short jabbing jolts alongside the persistent daily headache. As with migraine headaches, there are more females than males with hemicrania continua.

The cause of hemicrania continua is unknown. When the symptoms of hemicrania continua are present, it's considered "diagnostic" if the patient responds completely to indomethacin, a non-steroidal anti-inflammatory drug. Triptans and other abortive medications do not affect hemicrania continua.”*

*http://www.headacheexpert.co.uk/ChronicAndHemicraniaContinuaHeadaches.html
*http://en.wikipedia.org/wiki/Hemicrania_continua

The kinesiologist sent me an email today asking me if I had read about hemicrania continua. I cannot believe that after all my research on the internet, and my various appointments with the ‘best neurologists in the UK’ I hadn’t even heard of it. How is it possible that no one has spoken to me about it? What are all these headache specialists doing with their time? Virtually none of the medical websites I looked at mention the condition - they just list cluster/chronic/ice-pick headaches and migraines with aura, and without aura (if it is mentioned, it is just en passant under the chronic headache category).

More despair and anger at doctors, their misdiagnosing, their ignorance on their ‘subjects of expertise’.

The symptoms described above could not be any more similar to mine. When trying to explain what my headache boils down to, I always highlight the fact that it is a constant 24/7 headache which has not left me once in seven months and which varies in intensity, according to its whim (to which I am usually asked: so do you have it now? At which point I wonder which part they didn’t understand: 24/7 or constant?). This is so far the most frustrating and (worryingly) the most recurring question I have been asked.

On top of the persistent right hand side headache, I sometimes feel jolts on top of the constant pain. I may not have hemicrania continua as far as I know. I just read about it and have yet to see someone who deals with this condition (my only doubt is that I do not think I have any of the following, which is a required autonomic feature during exacerbations: conjunctival injection and/or lacrimation, nasal congestion and/or rhinorrhea, or ptosis and/or miosis).

But what is most worrying is that no one even mentioned to me the possibility of having it. I stumbled across a study conducted in Italy on hemicrania continua which found that innumerable patients with the condition have been misdiagnosed:



According to the website, “on average, the patients had tried 3-4 different classes of drugs, most of which were, of course, ineffective. 36% had undergone ineffective invasive treatments as well!”* How worrying is this, I ask?

*http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/

164 comments:

  1. Have the same diagnosis! Took almost a year to get a correct diagnosis! Not a well known ailment. Indomethacin does help if you can tolerate it. Good luck!

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    1. This November I will have been suffering for 3 years straight. I have gone to two separate "head" drs. who both told me that some people just suffer from 24/7 mini migraines. I found an article yesterday about a woman who finally had relief after 20 years of headaches and immediately when to my GP who gave me Indomethacin. Although I am worried about the side effects it is working and I am hopeful.

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  2. I have never heard of this either! I was diagnosed with NDPH about 4 years ago, and I think it is an accurate diagnosis for me. I hope that you find a doctor who specializes in these type of headaches and can figure this out for you - or simply confirm what you have already discovered and treat you properly!

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  3. I have been researching this headache for months now, because the doctors have been no help. This is the closest to the symptoms that I have been having, except for the conjunctival injection and/or lacrimation, nasal congestion and/or rhinorrhea, or ptosis and/or miosis. My face seems to get puffy though, when the headache gets really, really bad. I had to laugh when I read "When trying to explain what my headache boils down to, I always highlight the fact that it is a constant 24/7 headache which has not left me once in seven months and which varies in intensity, according to its whim (to which I am usually asked: so do you have it now? At which point I wonder which part they didn’t understand: 24/7 or constant?)." That is exactly what I have been dealing with, how frustrating!

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  4. I know, it's unbelievable annoying but it just seems to happen over and over again - incredible!

    Have you had any luck at all with a diagnosis? Or with reducing the pain?

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  5. Its amazing how much information you can find as you research. I stumbled across hemicrania continua today in my searching. I to have had no luck with doctors or medications. Currently I am on day 402 of a 24/7 headache, although mine do not fit this diagnosis. So back to researching for me and expressing frustration about incompent Doctors who just keep giving me meds.

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  6. I know, it's unbelievable isn't it? That's why I have given up with the Western medicine approach and have opted for a more 'natural' one which won't give me kidney failure or god knows what other types of side effects all those horrible meds have..

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    1. Please can you share with me what the more 'natural' way is. I have been on lyrica and celebrex for about 4 years. It helps keep them low but never takes them away. 15 years I have had hemicrania continua. Sometimes they give me shots in my neck to take away the pain but that leaves more pain in the neck for a couple of days and doesnt always work. Please suggest to me a more natural way.

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    2. It is hard for me to say which natural method may work for you but what has alleviated the pain for me, personally, has been kinesiology. Over the last 4 years my headache has gone down from a 9/10 to a 1/10. It is still there but I am hopeful that eventually it will be crushed completely...

      Numerous times I was offered all sorts of invasive therapies such as botox injections but I (kindly) declined them. Given that the headache has improved over time, I can only assume this is thanks to kinesiology which is what I have been doing since the beginning..

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    3. I have HC and went through the usual rotations of different meds and wrong diagnosis before figuring it out. Topamax and indocin, and my life is fully livable. I can tell the left side of my head feels a little different, but I can cope. It's worth asking a doctor about if you haven't yet. The relief after years of not having the right med combination is amazing.

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  7. I am SO sorry to hear all of you are having the exact same experience I'm having. I am a 28 year old female lawyer in New York City, presumably where some of the world's best neurologists are right? Well guess what, NONE mentioned the possibility of either HC or even cluster headaches, even though I said only right side, right eye, 24/7 pain, etc., etc. I did research on mdconsult.com and found out about HC and clusters... so aggravating. I had my dad, a physician, call me a script for indomethacin right away which was 2 days ago, and it seems to be working so so, I can't tell because I swear I'm rebounding from triptan hell. I am also going to 2 new neurologists in the next 2 weeks. FYI I don't get the autonomic things with HC, but they are not always present according to many journal articles, i.e. the tearing, congestion, etc. Good luck... Thank you for starting this site. I am going to report exactly what the specialists tell me, they are supposed to be very good, and I am going to bring all of the HC literature with me.

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  8. I am in my forties. I had my first episode of this burning pain the right side on top of my head on the 2006-2007.2009. The pain lasted everyday for 6 months and it seem to have a life of its own. This is a burning tingling pain. Also the levels of the pain seem to range from a 5 to 10+. I went to see a neuro and had an mri and was told nothing was seen. I was told it was a nerve pain. The medicine prescribed had a risk of heart attack or stroke. I settle in with this pain that went away within two weeks of the visit to the neuro. Now here come this pain again in April of 2009 and I have been in constant pain everyday 24/7 for 10 months. The lighting bolts of pain pain on the right top of my head. The pain levels go up and down. Guess what, I am a migrane pain sufferer. I have had migrane heads with the pain on top of my head. I have had two headaches at the same time. I can take something for the migrane and it will go away but this pain on top of my head remains. It never goes away. I have ringing in my ears somedays and some days the pain has been so intense it felt like it moved into my throat. I have seen two more neuro and had one more mri. Nothing was found and medicines have been prescribed that did not work for this pain. I thank God for my faith because that is all I have to deal with this pain. I also stopped working because of the pain (it is hard to concentrate on some days because of this pain. I thank God that I can sleep at night. God Bless every person that suffers with this pain. I have been very fustrated with the docs. Just FYI for those of you suffering; you will have to be your own advocate in your search for the cause of your pain. I have been searching since 2006.....thank you for this web site....I may have found the answer

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  9. I think i know wha y'all are talking about....
    3 months after my 18th birthday i was at a movie with my girlfriend and i got really sick (flu like symptoms) nothing too serious. I went home slept it off and woke up the next day with the worse imaginable pain i have ever had.
    i used to get headaches everyonce in a while when i was a kid.... i have a huge head so i tended to bump it into things but nothing like this. the pain is debilitating and nothing really works for it as far as western medicine goes.
    Curently im on day 1570 something (oct 18 05) ive seen every doctor from nuerologists to pain specilist to accupuncturist and its all about the same, nobody could tell me whats wrong.
    My first nuerologist told me to lay in a dark room and that on feb 1 (curently late oct) it would get better as long as i took depakote and was strung out on percs... december came aroud still nothing so he tells me to double my dose... imagine my surprise that on feb 1st i still had a non stop 24/7 migraine...
    He carted me off to a pain specialist who was doing steroid injections into my facet joints and after 2 treatments he determined he could burn out the supposed problem nerves with radio frequency. Obviously this sounded terrifying and i was only 19 so i wanted to ask a few question and his exact words were, "I'm sorry but i have a lot of patients and i dont have time to answer your questions. Just get the Appt. set and we will take care of it." This was the last time i saw him.....
    I can go on and on and probly still on with horror stories of my headaches but nobody has ever given me a correct diagnoses. tention headache, migraine, clusters, possible spinal meningitis (spinal tap among the worse horror story i could tell you)the nuerologist actually came up with a diagnoses of "you are not mature enough for school and your overbearing mother is causeing your pain"
    I've heard anything and everything been on just about every pill one person could possibly take... except the indomethicin... i was prescribed it with orednizone and the pharmacist told me that combining the two could really be bad for me and that was at the end of the first neurologist so i didnt try it.
    After a year and a half my kidneys liver and thyroids had just about had it and the pain was still unrelenting. My girlfriend and a few of her friends had pointed out the medicinal benifits of cannabis and after lots of research i decided to try it...... anybody who denies that cannabis is not a medicine is either extremely ignorant or just plain dumb.


    sorry getting a little to depressed today but hopefuly ill write again

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  10. thanks for your comments... so sorry to hear it's all been so bad - i have been through a similar, albeit very different, story so i understand. re the kidney and thyroid problems, that's precisely why i didn't want to take any medicines... will you let me know how you're getting on at the moment? at what level is the pain now?

    do write again, thanks for sharing.

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  11. i have almost personified my headaches as my own worse enemy because they have a mind of their own. when i was getting out of western medicine and into eastern i found an amazing accupuncturist. and with his help i was able to save my liver and thyroid (My blood test showed my thyroid was at a 13)but he was never able to do a lot with my headaches. everytime i would tell him where it hurt he would put in a pin and i could feel a difference, but it would just migrate to another part of my head like a fly that you just cant seem to hit. he would keep putting pins in trying to help but it got to the point that he had to stop or else he could make me real sick.

    The same with the accupresurist, massuse, bio merdian, and just basicly everybody.... even with pain pills its just like puttiong a big band aid on it, and herb i can still feel the headaches but it just makes me not care as much or maybe even puts my at peace with them.

    Somedays i will be feeling just about normal(for me) and then POW out of nowhere i feel like someone hit me in the back of the head with a hammer, or like my eyeballs are about to shoot out of the sockets... and then just to be a bastard everything will go back to me normal for a few seconds and then BOOM my forehead and the back of my neck tence up so tight i almost fall over.

    The worse thing about the really really bad headaches is theres nothing to stop them not even drugs. this past christmas my girlfriends family and i went to see a movie... i smoked a joint (of spice) before we went in and after about an hour and a half i started getting this dull roaring pain shooting up from my shoulders up into my neck. it was like my headache was gathering forces. by the end of the movie it had moved into the top of my head, forehead and eye sockets. i started loosing balance and made it to the car. oncee we made it to the car i was in pretty agonizing pain probly about a 9, but what else is new. everybody wanted to go look at christmas lights and i didnt want to ruin anyones fun so i figured id tough it out.... most bad headaches will work them selves out after a little while, but not this one. after ten minutes i was curled ontop of my self streaming in tears. i wasnt crying its just tears were pouring out, and i couldn't talk or even gesture that anything was wrong. after about an hour my girlfriend caught on and we all went home. by the time we got home i couldnt see two feet in front of my face my body was soaked with sweat and tears and i could barely form a sentence, they had to carry me inside. i would saay my pain level was a 12 or 13. all i could do was grab ahold of the parts of my head that hurt and just scream and cry and thrash around like a little kid. it was terrible her whole family had to sit and watch this unexplainable pain that nobody could do a thing about.
    Then out of nowhere my left side of my neck started having muscle spasms or something that made it feel like a tazer or something was hooked into it and was making it constrict upon itself thats when i got the worse pain of my life. id say a solid 14-15, but all i could do was thrash my legs around hoping to hurt them enough to take away a little pain. I don't have medical insurance so i didnt go to the er i found a benzo and a vicadin laying around that finally took the edge off enough that i could smoke a bowl and really chill things out, but for that 2 and a half hours i just wanted to die.... i never knew pain like that could exist and ive had a migrain for over four years straight.
    As for the future, i have given up on ever beeing cured, and to tell you the truth i really really believe they r getting worse, but its really hard to tell cause i have to live my life in a non sober haze. ive spent a small fortune on smoke and pills. i dont know if its the pain getting worse or all the pills ive been taking but president obama has made medical marrijuanna legal as far as federal stautes go in 14 states so hopefully soon i can move to a place where i can get my medicine.

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  12. that attack sounds dreadful. unbelievable to think that all the doctors haven't found anything - my pain is very different in that all i have is a constant headache, sometimes the pain increases (at one point 8s and 9s were daily occurrences), but i don't have any other pain that comes with it like muscle spasms and so on.

    re what you said about giving up on ever being cured, i know the feeling, sometimes i wonder if this wretched headache will ever stop, it's hard to believe it will because i can't actually remember what it's like not to have a headache. every time someone says they have a headache, maybe at work or something, it makes me think how lucky they are as they know that in a few hours it will be gone. i guess the important thing is not to lose hope, and the one way i can comfort myself is by telling myself that i wouldn't be the strong minded person i am if it weren't for this headache, because at the end of the day i have been through so much because of it, i have learned a lot from it and it has certainly played a part in who i am now.

    stay in touch and let us all know how you're doing. take care of yourself.

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  13. I am almost crying reading this blog. You are all experiencing the hell that I went through for eight years, before I found a neurologist that diagnosed me with hemicrania continua.

    I went through numerous family practice doctors, ear/nose/throat specialists, dentists, physical therapists, counselors,and neurologists trying to find out what was happening to me. I had several ct scans and and MRI.

    It wasn't until I reached the point of seriously contemplating suicide to finally end the daily pain, that I realized that I had to be forceful with these doctors and demand that they find out a way to ease the pain. I went back to the ENT doctor, who seemed to be the only one that actually had a curiosity in my condition. He did one more ct scan, and when we reviewed the results, he said is was nothing sinus related. He was ready to whisk me out of the office, until I asked him for a scalpel or a brick so that I could injure my head, and if he would kindly call for an ambulance when I did so.

    He referred me to a new neurologist, and one week later, I had a diagnosis of HC. I started on a regimen of indomethacin 50 mg 3x daily. I have been taking it now for two weeks, and I feel better than I have in years. Everyone I know remarks that the brightness is back in my eyes. I can sleep at night, I can be out in the sunshine, I can function at work, I can live again.

    If you are experiencing any of these symptoms like I did, PLEASE ask your doctor about a diagnosis of HC:

    -- Constant headache on one side, with periods of sharp stabbing/prickly pain, especially around the temple or eyebrow;
    -- watering of the eye, droopy eyelid, light sensitivity;
    -- nausea;
    -- grinding of teeth, especially in your sleep;
    -- nasal congestion, nasal drip;
    -- tightness and pain in the neck and ear;
    -- severe pain when crying on the headache side;
    -- blinding pain when lowering your head beyond waist level, such as picking a dropped item off of the floor.

    I thank God that I found this doctor who was able to diagnose me at the first visit. I am so angry though that it took eight years and dozens of tests and doctors to get there.

    Please know that there is hope, and you don't have to live like this.

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    1. my neuro is starting me on indometacin 25mg building upto 5omg, he has diagnosed hc, it has only taken 15 years to get here, i have had all of the triptims, etc, and still in pain, 21 + spinal taps, scans etc, my next scan mra/mri in 3 weeks time, hope this drug works, as i get botox at xmas next, you have to push your doctor, neuro, and even get a second opinion, as you look ok/normal but head pain is no laughing matter, and it drives you to dispair, see how it goes...

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    2. Hi, I just want to know, how long do patient have to take indomethacin long term usage has bad side effects.

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  14. Thanks for your comments, Gina. Glad to hear you're better and have finally found someone who was able to diagnose you. When I went to see a neurologist a while ago he mentioned that 'Hemicrania Continua' itself is not exactly a specific condition, rather a generic name for people who suffer from headaches and whose condition doctors haven't been able to pinpoint - I guess one reason for this is because doctors don't really know the exact cause of it. Having said that, people who suffer from HC seem to all respond to the same (or very similar) medication which I guess must also be why they are categorized in the same group. Have you been told the same?

    Ouch 420, have you looked at Antiphospholipid? I had someone comment on my blog (see 'Day 365 - The Weather') who was recently diagnosed with it, and having read a bit about it, could this be a possibility for you?

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  15. Amen and God Bless to all who have HC... I have been back and forth to the Mayo Clinic for the last 8 months with this. It wasn't until today, that I finally got the info on HC. I also have some Optic Nerve problems, but the HC takes the cake. I have all the other symptoms too... the watering eyes, the stuffy nose, the whole lot..... these are the worst, but hopefully now that the Optic Nuro told me about HC today, I can get some treatment.
    Good luck to all......

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  16. does HC take a toll on everyone elses sleep as well.... i have learned to not try and keep an app before noon because most days i not able to be up before noon.
    Theres really no rhyme or reason to my sleep patterns. some weeks ill sleep 10 hours a day and others its ten hours a week. Most of the time when im sleeping a lot drugs play an important role, but on those weeks that i only get 7-10 hours for the whole week i can eat 5 xanax and still not fall asleep.
    I just toss and turn like crazy because i can only stand to lay on one side for about 10 minutes before the headaches migrate in and i have too flip.
    I'm guessing y'all get the same but i had to ask..... one more thing... has anyone ever recovered from HC

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  17. Ouch 420 Are we rekated,,,, my headache's are almost identical to yours. This sucks. I've always had migranes even as a kid, but now, for the past 7 or 8 months it has not stopped. Every day it's there, but it's about 2 or 3 times a week that it shoots up from my neck and into the back of my eye. I have been to Mayo clinic 3 times and finally they said it was HCC. I've only been on the meds for about a week and so far, they arn't really doing the trick. I feel for everyone here. Hope it gets better soon.

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  18. I have struggled for 4 years. Been to tons of docs and specialists. Just found one in Cornell in NYC that diagnosed HC. been on Indomethacin for 3 weeks, What a god sent I feel like a human again. Doc told me I have to ween off because of side effects to organs. Does anyone know if after weening off the headaches will retrun??

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  19. I was taken off the the indocin and put on topamax... good cuz the indocin side effects are horrible, bad cuz the topamax arn't much better. Results are not great, but are not that bad... I still have some headache pain, but it's at least tollerable now. I can function with the headache now, whereas before I couldn't get out of bed. I take the topamax 2x a day and funeral as needed... All I know is HC SUCKS......................... Good luck to all.

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    1. Hi Anonymous,

      I used to be on topamax and I had to stop because it was messing up my cognitive abilities. I would forget simple words, could not always form a sentence correctly, and my short term memory was going to hell. After YEARS of doctors not figuring anything out, and dozens of useless medications, I rec'd the hemicrania continua dx and was started on indocin. I hope it works. The topamax worked a little, but the side effects for me were horrid (I kind of need my short term memory lol).

      Anyone who suffers with constant headache pain understands and those who do not have no idea how bad it gets. Good luck to you!

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  20. For those of you having persistent daily tension headaches with Migraine Aura symptoms please look into Chiari Malformations if you haven’t already.

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  21. I was just diagnosed with hemicrania continua today, March 26, 2010. I have told several of my doctors about the headaches, but none have taken me seriously. I finally went, on my own, to the Cleveland Clinic Headache Center. I saw Dr. Mark Stillman. I told him my symptoms, he asked me dozens of questions and did a physical exam, i.e., blood pressure, nose eyes, ears, etc. He said you have hemicrania continua, benign. He did an injection into the back of my head on the left side, where the pain always is, and said he wanted me to complete a sleep apnea study. He prescribed indomethacin and nexium for my stomach. I have to get those filled tomorrow. I feel a little better now, but the headache subtly lets me know it's still there when I turn my head fast. I hope I can tolerate the meds. I wonder if sleeping habits can cause this condition? Anyway, go to the Cleveland Clinic, if you can, or have your doctor call and discuss your case with them. I hope you all get relief quickly. I read the description of the symptoms and I totally relate. Nasty condition.

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  22. I went to Cleveland Clinic today April 7th as I have a friend that went there for surgery in 2009! I am sooooo thankful he refered me to them.......the Doctor was very helpful and took so my stress off my shoulders...I as well have HC...I've 4 MRI's before going to CC and they showed nothing! I am now waiting on the MRA results from todays visit. I have the same symtoms that most everyone on here as....it's been going on for a year and it's the worst thing ever no meds EVER releived the pain..physical activity makes them feel worse. some days it just comes out of no where....my pain is on the right side (front) I feel like something is stuck behind my forehead...its awlways there!I will be starting the Indomethacin today 3xs a day for 10 days if I do not react to this medicine I will be going back to the doctor for the next step! Everyone Cleveland Clinic has given me hope that it can be treated!!!! Good luck to you all!

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    1. did u have a small optic nerve in the eye with the pain? did you have marcus gunn pupil too by any chance

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  23. I have had a headache since Christmas this past year. It came out of no-where, it started with the right eye/right ear pressure headache, with dizzinss, forgetfulness, and sensitivity to light/noise and smells... along with all of this the right side of my neck and face started spasming or twitching. After 3 months of no relief my husband demanded I visit my GP. My GP thought it was a migraine and put me on Midrin and Antivert. After another month of no relief (just feelng doped) my GP sent me to a Neurologist who as soon as he walked in the room knew that I was experiencing HC. I am still scheduled for a gambit of tests to rule out Lord knows what. He prescribed a half doses of Indocin to see if my stomach could handle the drug. My question is, is there light at the end of the tunnel?? I want to be able to work out, golf, hell just simply walk-up a flight of stairs again without feeling like the corner of my head feeling like I am being stabbed (once they get my dose right???).

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  24. I thought I was the only one in the world who had this problem. I have been suffering headaches 24/7 since 2004. I had a break of about a year until I had a double mastectomy for breast cancer at the end of 2007 and the headaches have been back ever since.

    No one I know has this problem, no doctor or therapist could pinpoint what was wrong. There's a good chance they thought there was something mentally wrong with me though. Hypochondria probably. I was told once that it was probably imagined.

    Today, finally, after years of doctors, tests and any type of therapist and natural healing you can think of, (plus a lot of money) I finally found a neurologist who diagnosed Hemicrania Continua. Hit the nail on the head. The same symptoms that Gina described. What a relief! To at least know what is causing it.

    Thanks to this doctor, who listened, cared, diagnosed gave me the lowdown and started a plan.

    While I am sorry you are all going through this as well, it gives me some comfort to know I am not the only one on this journey.

    This is our karma and we can help each other.

    I will look further and if necessary start a website specifically for HC. If anyone would like to say what they would like on that site let me know.


    Cheers

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  25. I belong to a hemicrania continua group in Yahoo, (hemicrania_continua) some things that help from the people in th group:

    Occipital stimulator (I have one and it works)
    Indomethacin (drug of choice)
    baclofen
    Lyrica
    compazine
    time release morphine (doesn't help MY pain)
    benedryl/phenergan combo
    Bosweilla (a vitamin with effects like indocin)
    melantonin (effects like indocin)
    diamox

    Even with the occipital stimulator implant, I end up in ER about once a month but life is much better for me. The Headache loved indomethacin, but indomethacin didn't love me.

    It is not a good diagnosis to have. There are very few of us, and it is not profitable to develop drugs just for our disease. Basically if the drugs don't work, its a stimulator or nothing.

    http://www.cefaleias.com.br/dls/hemicraniacontinuainCDHbook.pdf is a good link to detailed information about HC.

    PS - for most of us The Headache NEVER goes into remission, but a few lucky souls have experienced it. Hoping some of you are the lucky ones!

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  26. I've only had the constant (24/7) headache on the left side for 3 1/2 weeks, but 99% sure I have HC. I went to the doctor last Monday and she did a blood test to check for infection. I go back next Monday for the results. In the meantime, yesterday while looking online for possible reasons for the headache, I came across Hemicrania Continua. Oh my gosh- it fits my symptoms exactly. When I go back to the doctor next Monday I'm going to take some printouts on HC with me. Thank you all for sharing your experiences!

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  27. That's very lucky of you to have found out a possible diagnosis after only 3 1/2 weeks! Out of interest where did you find it and what did you google?

    It took me much longer than that to find hemicrania continua online when I was searching for possible reasons for my headache...

    Let us know what the doctor says, and whether or not she/he has heard of HC or not (don't be surprised, some are entirely clueless!)

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  28. I am in my 10th year with a hemi crania continua diagnosis. My family physician had the insight to send me to a specialist which resulted in a quick diagnosis. I have been on numerous medications over the years starting out with Viox. I now take Indomethacin which works very well. I also take Verapramil as a vascular stabilizer along with Pantaloc for complications of long term Indomethacin use. I have been to renowned headache clinics and seen Neurologist and there doesn’t seem to be much they can tell me other than how to treat it.

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  29. I too have the same. I was diagnosed about a year and a half ago and the specialist acted as if it was no big deal. Ha, maybe not to him...who was standing there healthy and whole with a smile on his face in the exam room. But for us who have it daily life becomes much more challenging especially when it is an ailment in which others cannot see with their own two eyes. If it were a lost limb, well-hey that is visable. Not this and so it is easlity passed off as being nothing....we are only hypocondriacs,whiners,babys of the sort! I have much more comapassion for anyone that says they're in pain now, whether I can visibly see it or NOT! Not treatment has worked but I am researching something new. A non-gluten and dairy free life style.

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    1. I hear you! This invisible horror! I am being treated by a physiotherapist practitioner trained at the Watson Headache Institute. Im about 8 weeks in and no relief as yet, but I'm sticking with it as at the moment it's my only hope! Indomethacin worked brilliantly after16 days, however I started to have side effects at 10 days. I carried on taking them for almost 3 months because I was just so glad for the relief. But the pain returned as I was weaning off them. Celoxib (I think) gave me frightening heart palpitations on the second dose, so I stopped that. I am really scared to start the new med Toprimax as the side effects are as bad as the Indomethacin.
      I am beginning to lose hope that I can get any relief. Are any of you still able to work? I have had about 4months off sick so far!

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  30. I have suffered from my headaches for almost 4 years. My Neuro kept prescribing me migraine meds and triptans. I never responded to them. I came across HC while looking online and asked my neuro to put me on Indo, why not, I have tried everything else. That was a year and a half ago. She reluctantly put me on it, but didn't think it would help because I didn't fit the criteria for HC. The indo worked great. I was headache free for almost 1.5 yrs until I developed an ulcer and my doc took me off to clear up the ulcer. I am currently at Mayo clinic in Rochester, MN. I met with a neuro and that day he told me that I had HC. It took me 4 yrs to get a diagnoses other than migraines. I was also told that I should have been on a PPI along with the indo and I probably wouldn't have the ulcer issues I have been dealing with. I am so excited to go back on indo and live without my headaches. I would recommend Mayo clinic to anyone, there are 3 in the US.

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  31. My specialist says HC is on the SEVERE end of the headache pain spectrum, and I believe I agree!!

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  32. Has anyone with HC had positive results with a gluten free diet? I am wondering if I should try this

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  33. I am wondering the same - I actually went on a gluten free diet last year as part of my 'nightshade free' diet. I admit it didn't last for long as then things changed when I went to see the kinesiologist so I didn't continue with it as I had to reintroduce some foods.. would love to hear any comments on gluten free diets and their results.

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  34. My story is so similar to that of all of yours. My problems started about three years ago. I too went to a specialist with my "thunder and lightning headaches" and he told me it was migraines. He tried me on all sorts of drugs that just kept making me ill with the side effects, but never had any affect on the constant agonising headache and stabbing pains. Finally I was so depressed and frustrated when I went to my GP I was crying with the pain. He referred me to a new Neurologist who diagnosed me straight away with HC. He put me on Indometicin and it was almost immediate relief. The pain has not completely gone, I still get the constant background headache, and occasional pain when I get very stressed or run down, but I am 100% improved from how I was. I was in fear of loosing my job, it was destroying my relationships and no-one understood just how much I was suffering. Most people thought I was making a fuss about nothing. I too was told that it was "all in my head" and that I was probably creating the problem myself. You get told so often that you actually start to believe it! Things are much improved now. I am due to see the specialist again at the end of the month, I am taking Lyrica to prevent any stomach problems and Pregablin to help me to relax and sleep at night. Even if I never get any better than I am at the moment, I am still hugely grateful that someone finally took the time to listen to me.

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  35. Does anyone have worse pain with bad weather (thunderstorms) or hormonal fluctuations throughout the month? I was diagnosed with HC and put on indomethacin but had to stop it. It affected my intestines so badly at first my GI diagnosed me with Crohn's disease (I had hundreds of ulcerations)but the Crohn's treatment did not make me better. I was in the hospital 2 weeks because of obstruction caused by it. After going off indo the ulcerations cleared up and all my docs say i cannot ever take it again. Now I am miserable and wondering if anyone has had luck with anything else? I have tried amitriptyline, topamax, zonegran, verapamil and of course every kind of triptan without success, and botox injections.

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  36. Hi Tara, it sounds as though you have been going through hell! I am very lucky, indomethacin hasn't had that effect on me, I get occasional stomach upsets, but I am taking Lansoprazalole to help with that. My consultant has told me that there are no other drugs that are effective on this condition at the moment, but then went on to tell me that I will not be able to take Indo for a great length of time. So I am now dreading the day he tells me to stop taking them because I know there is no other treatment available. Indo isn't totally effective on me, but it does help alot. I still get attacks when I get very stressed, or if I am ill (particulary with head colds). My cousin is a Matron on a Neuro ward, and she has suggested that breathing pure oxygen during a severe attack sometimes works. it might be worth making the suggestion to your Neurologist or GP and see what they have to say about it. I really hope that things improve for you.

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    1. I've read that too, about the pure oxygen. I'm going to speak with my docs about it

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  37. I lived with what seemed like a constant headache for 2 years. I went to see doctor they just wanted to give me pain medicine and tell me it was migranes. But, my headaches got worse when I was laying down, bending over or straining- to the point I thought my head would explode (sometimes I wound wrap my arms and hands around my head just to steady it because it felt like it would pop open at any second). Finally I went to a neurologist and had a MRI with contrast and a 24 hour EEG. I was found to have Chiari Malformation and a seizure disorder. MRI revealed mild CHIARI MALFORMATION. My EEG was abnormal showing low SEIZURE ACTIVITY in my frontal lobe constantly- even though I was up and functioning (with a headache 24 hours a day). I was started on Lamictal - which is a medication used to treat bi-polar disorder and seizure disorders. I don't care what it treats as long as it helps the pain. My headaches went away after approx. 1-2 months of beginning treatment. The medication will be life long, I tried to come off of it once, but the headaches came back so I was started back on the medication. Maybe this information could help some of you out there- suggest a MRI and a 24 hour EEG (the mini EEG they did in the doctor office was not enough to diagnose me- ask for the 24 hour EEG).

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  38. I appear to be lucky as I was successfully diagnosed with Hemicrania Continua only one month after the suffering started and a week in hospital.

    I've been on Indometacin for approximately 3 and a half months now - the pain retreats for a week or so and then hijacks the other side of my head.

    One thing I will say about getting Hemicrania Continua diagnose is that the difficulty appears to be HC's complete lack of testability. You cannot 'test' for HC, it can't be seen on a CT nor will it pop up on a lumbar puncher or any amount of blood tests. Combine this with the fact that HC is a very rare and a largely unresearched chronic form of headache - it doesn't surprise me all that much to hear of all the misdiagnosis going around.

    When I was diagnosed the headache specialist let me know that it was my succession of negative tests along with my description of the pain that led to the diagnosis. Reassuring right!?

    So basically, if all the kings horses and all the kings men cannot find anything actually wrong with you other then the fact that you have continuous pain that varies in severity and always occurs on the same side of the face and head - then HC is indeed a possibility.

    Ironically, you really don't want to be misdiagnosed with is HC also. Indometacin is slowly dissolving my stomach and my kidneys aren't looking too hot either. I hear that the National Neurological Hospital in Queen Square London is looking at the use of Greater Occipital Nerve Blocks as an alternative. But they seem to be the only people doing anything about HC.

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  39. Oh wow this is all so crazy. Iv had most of these same symptoms. 24/7 headache, always on right side (but very fee times on the left) watery eyes, nasal congestion, eyelid droop. And fluctuating pain levels. Don't have any insurance (working on that) but all I know is that nothing works, Iv tried any over the counter drug and other remedy I can find. I'm only a teen and my kidneys probably hate me.I can't concentrate in school and it's seriously affecting nmh life. I haven't had a painfree period in 2 years. This is horrible. When I go to a doctor I won't stand to be diagnosed with a simple migrain because Iv been told that by everyone I know. Know people know me not as the fun living energetic person I am, but as the "girl with a headache" i hope I can stop this pain soon

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  40. It sounds to me as though you are going through the same problems I did. I was also known as 'the girl with the headache'. You definitely need to ask to see a Neurologist. A GP cannot diagnose HC (if thats what it is you have). I know how you feel, it took me four years to get someone to listen to me. I was so sick of being told that it was migraines all the time. If it is HC, no over the counter medication is going to work on it. You cannot carry on the way you have been, and a good Neurologist will be able to help you. Good luck, and let us know how you get on!

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  41. Oh wow I cannot believe I actually found this I knew what I had wasn't just some normal migraine like the doctors keep saying. I have had a headache since september 11th of 2009 and I'm still in high school. It's so hard to concentrate with the constant pain but now hopefully I'll be able to get some relief and live my life.

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  42. hi i have just been diaginosed with hc by my consultant ,after many years !! But im wondering if once again shes got it wrong ,as i only experience the pain in my left eye ,not actually in my head. She said all tho the pain is in the eye it does not mean that is were the source of the pain is dervied from. she is starting me on Indomethacin an omeprazole ,when ive slowly come off my other medication Toprimate,which i have been on for 2 years but as not done anything for me.

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    1. Sounds like my pain for the first year. It was only behind my left eye. I am extremely short sighted so I assumed it was an eye problem. After seeing various ophthalmologists, that ruled my eye out, they referred me on to a neurologist.

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  43. hi, im the same person who posted January 11th i was wondering how many of you have been just labeled crazy and tossed to a counselor?? im deeply emotionally hurt that my parents (without having seen a doctor yet) are convinced that im either an emotional teenager or that im just begging for attention. if i didn't need a counselor before, hearing that from my parents may have put me in a position to need one. do most patience with these symptoms go through the same "sanity questioning" phase? and also iv heard that they may need counseling for things such as depression due to the chronic pain. just looking for some input. thanks

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    1. Thankfully no one dared to, at least before I was diagnosed. That said I am soon to start seeing a counsellor for chronic pain, because I actually feel like im losing it at times, but I think this condition is so debilitating and it has absolutely changed my life so much from before it began that some support is warranted!

      Have you thought of asking your parents to read these blogs? My 21 year old found a you tube video of a lady suffering with paroxysmal Hemicrania and after watching it she just came and hugged me and cried! She said she had no idea how much ive been suffering! Then that evening she showed it to my husband, and he was did the same.
      Best of luck sweetie x

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  44. Hi, I am sorry to hear about what you're going through - sadly, I think the whole councillor thing is standard procedure as no one seems to believe us as we have no 'visible' symptoms! I myself was told to go and see a councillor on various occasions, having been told that the headache may just be something 'emotional'... and yes, I would also say that at a given point the pain may well lead to depression which thereafter may lead to seeking counselling.. I myself went to see someone but found it didn't really help (not even sure the counsellor believed I had a headache).

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  45. Wow, this sounds exactly like me! I have had the constant, daily headache since just before the new year. Thought it was sinus-related because of the nasal congestion (and my history of sinus problems) so we treated for sinus infection, did decongestants and sinus irrigation - to no avail. Had CT scan of sinuses which was clear.

    I am a migraine sufferer, so my doctor thought it could be some weird migraine manifestation that wouldn't go away. Never thought of that, so we tried both vicodin (which I had been taking at night to try to dull the pain anyway) and triptans. No effect. Tried a shot of demerol to try to "break the pain cycle" which didn't work either. Now I'm on a 2 week course of low-dose morphine. No help. Yesterday I got a bad bad headache (8-9) and the doc said go to the emergency room for pain meds if my triptan didn't work. Took the triptan and went to sleep -hour and a half later, really bad pain was gone but what I've started to call my "baseline" pain on the right side was still there. Waiting to see a neurologist but it could be a month or two...

    I have the bad nasal congestion on the right side only, watering eyes as well. Haven't noticed drooping eyelid but my eye does feel kind of weird in a way I can't explain. I never know from minute to minute how bad the pain is going to get, but I know that it will always be there. Did the triptan help yesterday or was it just coincidence and my pain just happened to go to a lower level at that point?

    What the heck do I do while waiting for the neurologist appointment???

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  46. Dear Anonymous of 11th Jan and 9th Feb,

    When you have a so called "rare disease" which no tests show, I am afraid you will always be labelled as a "nutter". It is the story of my life and now I am nearly 56! I have learned to use Dr Internet and go to the doctor only when I break a leg. What I have learned is that NO doctor will ever tell you that they do not not a thing, they will salways pretend that they know though they do not have a clue what you are talking about.

    Also from your family, I am afraid, you will probably not get much understanding as they get fed up of hearing you saying that oou are in pain all the time. So, welcome to the club! I do hope you will be able to solve your problem as a constant headache is one of the worse curses that can happen to a soul.

    An Italian Friend

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    1. I am ready to blow my head off I have it all the pain the drooping eye shoulder pain in my scapula and never ending pain been dealing with this for five years and no meds work. So what to do??? I use to be very active working out boating and now I am a hermit in my house loosing memory and loosing hope. Suicide is on my mind big time. I pray for you all.

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    2. calm down please i have had hc for 11 month's now ,along with horners syrdrome one huge pain in the a$$ every day i look in the mirror and see a freak looking back at me.i refuse to take any western med's.i do strongly recomend melitonin 5mg to start {ask doctor do be sure }.went to the u of m and that doc was the first one out of 6 doctor's to tell me what i had .every other doc just want's to spend your money on test's and more test's your part of the system .you have to be your own advocat you will get there stay strong.

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  47. Thank u both "Italian friend" and permanent headache. I'm so sry for the both of u. Thank u for writing though. It may just be me but I feel like it helps a lot emiotionally to here from you. I'll probably visit this website alot to post or provide support to others. So u won't have to refer to me as anonymous ur welcome to call me "rawr" (I'm a teen I can't think of a better name) and I'll be sure to state who I am each time I post. Thnx again and I hope to hear how u both fair.

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  48. Dear Rawr, i'm so sorry to hear about what you have been going through. It is so very important to have a level of understanding and tolerance from your family and friends. I am lucky, mine have been great, but even they get fed up with me telling them "I can't go out because i've got a headache". It is difficult for other people to understand what we go through. The very notion of having a 24 hour a day headache is inconcevible to most people. I have alot of sympathy for you, but do persevere. Go and see a doctor for a referal, and don't give up unti you get it. It took me four years to get a diagnosis, and it was a relief to know that someone was finally listening to me. Good luck!

    Snowflake x

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  49. So,I feel tremendous compassion for all who have posted here. My first right-side headaches began in May 2008 resulting in my primary doctor making an ENT referral. ENT treatments included multiple prescriptions over two years of wide-spectrum antibiotics (not good), sinus cauterization,surgery, etc. ENT referred me to a a neurosurgeon who ordered a brain MRI ruling out Trigeminal Neuralgia and wanted me to take Lyrica which I refused until a definite diagnosis was found, fearing side effects of this medicine (weight gain, suicidal feelings and drug dependency). I saw a periodontist who ordered a dental CT which showed nothing. I finally changed my primary doctor to a local Mayo Clinic educated Internal Medicine Doctor who referred me to the Rochester, MN Mayo Clinic with my one-sided head (eyebrow and temple) pain remitting until December 2009 which at that point never stopped. Mayo Clinic visit this month resulted in clear evidence of HC. Also saw a Dermatologist for Burning Mouth Syndrome who hasn't yet ruled out possible fungal infection in sinuses and upper palate from all the antibiotics and sinus surgery in 2010 and gum surgery with donor tissue from upper palate in 2009 for lower gum recession. ENT results from Mayo CT were unremarkable. Awaiting results of culture and blood work to rule out fungal infection or vitamin/nutritional deficiency. The neurologist will recommend Indomethacin if pain persists after two months. Some things I have learned on my own are eating gluten free as well as anti-fungal foods (garlic, raw red cabbage, kale, etc. and use of a number of well known anti-fungals such as olive leaf extract in water) especially no wheat or sugar have helped me. My stabbing temporal pain and eyebrow swelling have improved with the anti-fungal practices. Mayo Clinic has integrative and complementary medicine including a database of all supplements to rule out negative interactions/harmful effects of any supplements. If I can avoid medicine I will, but, Mayo neurologist says we start "low and slow" with medication. I think diet, stress reduction and proper rest are key for those who suffer with these symptoms with moderate use of medication. I personally would like to be able to exercise again which would be a welcome benefit of medication. No one can really diagnose or understand this puzzling condition thus far in my experience than the Mayo Clinic. Best wishes to all . . .

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  50. Hi everybody!
    At the end of the day we always get to the same things.....intolerances, fungi, stress, damages caused by medicines and vaccines, nutritional deficiencies, the desperate need to detoxify our bodies....
    I was also given Lyrica for my migraines and fibromyalgia and I was on it for a few months; it did nothing for my problems it only caused a terrible water retention plus a series of other problems so i stopped it and the consultant said that it was me who did not want to take it. Same thing happened with that incredible killer discovery of the pharmaceutical world called Cymbalta....All said. Also they keep giving the same medicines for different diseases. The truth is that it is well over 20 years that no active principle has been discovered. All fantasies. To keep spilling money for the famous eternal researches that lead to eternal future discoveries. I do wonder why nobody ever asks for money for research on supplements (which work) and so many have arrived on the market in the last years. And some are pure miracles.
    Do you know that in May the EEC will put a ban on most herbal and all Ayurvedic and Chinese remedies? It seems that after having tried for many years, May 2011 is the date.
    All material for thought.
    An Italian Friend

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  51. Dear snowflake x, it's Rawr, I really do understand where your coming from. I get it. It only annoys me cuz most of the time I don't say anything. And then they either don't notice or ask why I'm so serious when had been laughing 20sec ago but it's a Lil hard to do when u feel like ur temple is gunna explode. There was a point where I didn't care anymore.but that was a horrible experience cuz I think I had stress induced halluinations and nightmares every night on top of the insomnia like sleep pattern I already have had since these headaches started. So I stopped being all stressed cuz it made me feel insane. (lol) but thAt means it's back to worrying and feeling bad to tell any1 for fear if worrying them or them not believing me. I actually have a horrible headache right now including shock like pain bursts Wich I just had.. I do completely understand though and thAnk you for sharing ur thoughts with me. I haven't seen a doctor yet. I don't believe I'm ever going to get insurance cuz there r probably ppl who need it alot more. I recently looked at fibromyalgia cuz I had always had random pains but was told I was growing. I still do, and if I beat the area where it hurts it lights up not on the area but around it in red dots. But my headaches are really the only thing that are horrible and I realize that it's horrible to believe that I could have something that bad when there r ppl out there who really do have it! I'm going crazy because my headache is making me hyperactive at the moment. Thank u again snowflake x an I'm happy for u to have found help. In an attempt to make this paragraph more cheerful, I'm going to high school next year, can't wait! :)

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  52. It's Rawr again, anybody know anything about paroxysmal hemicrania? Also known as sjaastad syndrome. It seems sort off similar? I think, idk very confusing, I believe it also responds to indomethacin... Although it sound as though they relate more to clusters cuz it's a headache every 2min with a 30 second interval. And the headaches can last up to 45min. It's not 24/7 like what I feel, but it may be someone elses awnser? U should write a blog on it to get it better understood, if u have the time. (that was for permanent headach :P)

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  53. It's Rawr, HEY all! I just got back from a doctors appointment and he thinks I have tmj I forgot to tell him some stuff cuz it was my first ever visit and I was nervous. But my doctor an his student assistant wer great and the best ever and I couldn't feel more cared for. After some reflex tests he started to do those wierd bending my neck and head type tests. He came to the conclusion of tmj, it sounds like it fits he turned around and found the same thing in my mom, tmj and sleep grinding is what is apparently causing my headaches. I pray to god ylthis is what it is and have all the faith in the world. Plz let me know how u all are doing :)

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  54. I was diagnosed with HC yesterday. In a way it was a relief as it was an explanation for all the pain that others couldn't explain, MRI and CT scans could not pin point, yet it was the night mare that I live 7/24. I started on the indomethicin yesterday. The results are insignificant but noticeable. I am combining the medicine with exercise, a gluten free diet and acupuncture. Hold my fingers tight as they are crossed. Blessings to all who are walking down this same path. Linda

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  55. The more I read of personal accounts and stories, the more I believe HC is what I have. My headache started in April 2010...no history of headaches and no family history. I've had every test imaginable and been to every specialist I could. They got better around Thanksgiving of 2010 but gradually crept back starting in February 2011 and hit full force with a vengeance in the past month. The latest episode ended with a visit to the ER with bloodpressure spiking at 200/100, IV's with Toredol and yet another CT scan that showed nothing. This is the most depressing, distressing, misery I've ever experienced. I'm headed back to the neuro./headache specialist that suspected HC.

    It's sad to hear about the pain and suffering of others but comforting that people can relate and sympothize and I'm not alone or crazy!

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  56. My brow bones are actually so sore when I get one of the worst headaches. Does anyone else experience that symptom with HC?

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  57. I do suffer with a high degree of sensitivity when i'm having an attack. It gets so bad that I can't bear to have my head touched, or to wash and brush my hair, so I do know how you feel!

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  58. I was diagnosed in december afer having a headache for 8 months. The indo was wonderful. Headache free what a relief. Finally sick of taking drugs every day asked Doctor if I could give up the drugs he said he would wean me off. Then he said if you have a headache I will see you in six weeks if not I will see you when you need me. Guess what made my appt. today hasn't even been six weeks the headache are still there. Back to the indo today and most likely forevermore.Oh well better then that darn headache

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  59. For all who are wondering if a gluten-free diet will help, not. I am a Celiac and have been on a gluten -free diet for 6 years and late last year was diagnosed with HC. So a gluten-free diet didn't help me.

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  60. I was diagnosed almost 6 years ago with HC after suffering for more than 30 years. Diagnosis was made after Indomethacin stopped headaches. My gut couldn't tolerate medication so was switched to melatonin. I take 15 mg. at bedtime and it has blocked the headaches. This has been life changing. I had tried acupuncture and other alternative therapies that helped short term, but melatonin is the long term answer.

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  61. My wife has been diagnosed with this so I know what you are going through
    My wife was going to travel to Disney word in September but is afraid the flight might make her worse ant one had any trouble with flying

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    1. Hi...out of interest, is it common that the pain from HC will increase whilst flying? That would make sense, as my HC developed one day after arriving in Portugal and has been with me for almost a year now.

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  62. I wish I could say that putting a name to this awfulness that I'm dealing with for the last few years would make me feel better. I'm already on indomethacin, from my neurologist. It worked for about three weeks and this was a year ago. I'm seeing my first "specialist" in two days and I hope to God he has some way of offering relief to me. I think the hardest thing is trying to explain to people what it's like to have this pain in my head every day - it's like they just don't believe it. I did have Botox injections in my forehead and neck a few months ago, that also helped for about a month and felt like my head was insulated more than pain-free - but it was a welcome break from this daily pain that I live with.

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  63. Hi lionfish,
    I was exactly the same as your wife when it came to flying the first time after I got my headache. I've had it non-stop for 4 years now - I havent been diagnosed with anything after years of tests but havent had a lumbar puncture yet so HC is one of the possibilities. The doctors all kept telling me I was fine to do anything I like, but its hard to take their advice when they tell you you are 'medically well' and you know how very unwell you are. So it took me 2 years (and a lot of googling IIH forums where they were also worried about flying but had no problem) to get the courage to try flying, and I flew a short flight first, but thankfully it made no difference at all to my condition and I've since flown many times including a number of UK-AUS long haul flights. It also took me until the 4 year mark to have the courage to go on a trip to africa which involved having to take vaccinations, because I didnt think my body would be able to take it, but again it made no difference. So I guess we just have to remind ourselves that our bodies are mostly very healthy still - its just one small bit of it that is malfunctioning and making us feel so bad - and keep trying to do the fun things in life. So I hope your wife does try to fly soon - it made a big difference to how happy I was living with this thing.

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  64. Hi Guys, just as a quick update, I now have a new Neurologist who has decided to try the Occipital Nerve Block injections on me, and he is also going to try Oxygen Therapy too. Hopefully one or both of these things will give me some relief.

    For any of you who may be interested, there is a group on Facebook called Rare Headache Disorders Support Group. It is very interesting, and well worth a look.

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  65. I started having these headaches when I was about 19 -- right after I'd had my ears pierced, and I always wondered if they hit some nerve when it was done. After many years, I started taking Zyrtec and also Sudafed (this I took from the beginning) and have not had any full-blown episodes in quite a few years now. I do always have a sort of headache, but nothing I can't manage. I was taking Excedrin migraine (acetaminophen, aspirin, and caffeine) to get rid of the rest, but now they find that because of the caffeine, the acetaminophen's liver-damaging properties are increased, and the dose is two tablets a day. So, I try to limit even that and and make due with coffee and occasionally aspirin. But lately I don't even need the extra pain medicine or the Sudafed for days to weeks on end.

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  66. its amazing what everyone is saying about this rather unknown disease...
    my girlfriend has been in the hospital for almost a week after experiencing all of the same symptoms (most people say right side of the head pain and her pain is on the left side) . she is in visable pain and suffering. the doctors have her on indocin and that doesnt work, they were giving her prednisone, they gave her morphine for pain and that didnt work, they did the nerve blockage and still this hasnt worked. does anyone have any other outlets or places for her to turn? we are in the new york city area and i am curious about her well being. if anyone has any other alternatives i would appreciate it. i personally do not live with this but my heart goes out to all of you that do. i hope they find a cure for this... it ruins peoples lives.

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  67. Hi Fox,

    I live in the UK, but I have heard alot of people in the US talking about the Mayo Clinic being specialists in this area. Try looking them up on the net and see what you can find. I hope your girlfriend gets some relief soon. This is a terrible condition to live with, and alot of people underestimate how bad it can be if they don't suffer from it themselves. It can be very debilitating, and takes alot of understanding from friends, partners and relatives. Good luck to you both, let us know how you get on.

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  68. I, too, have this gosh-awful headache. i was lucky enough (after 2 years of constant pain), to find a Headache Center in the Pittsburgh area whose docs new exactly what I had in minutes after perusing the multitude of tests i had taken and had been negative. they prescribed me indomethacin, 75 mg twice a day, and in THREE days my headache was gone. completely gone. now i get the tinglings of the headache 3-4 times a year, start the indomethacin immediately, and within a week or 2 it is gone.
    I am blessed

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  69. I used to suffer from Hemicrania Continua and have written about my experience. I would encourage anyone to visit.

    http://www.hemicraniacontinua.com/

    My hope is this may somehow help someone.

    Mark

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  70. Hi Mark,

    Thank you for that, I had a look at your page, and its really interesting. You were very lucky that you were already taking Indo for something else I think! I'm not sure what the 'norm' is for this condition (if there is one), but I remember mine being a slow build up to the major pain when it first started. I was getting bad headaches for months before I had the big one that set things off. But I too remember that first major pain, and I remember thinking that I was going to die, it was so bad. I also diagnosed myself, took my diagnosis to my GP, he sent me to a Neurologist, and since then have been managing on medication. That is now becoming ineffective and the next course of treatment for me is an Occipital Nerve Block. Its not going to be pleasant, but i'm willing to try anything to get some relief.

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  71. I started having a continuous headache a month after moving to the Boston area. From June through November I saw the best neurologists in Boston, including teams at Beth Isreal and Tufts Cranio-facial. I had a barrage of tests each time including a full day with a neurophthamologist. I was given drugs that did nothing for the pain but made me so fatigued that I would take a nap after walking up or down the stairs in my apartment.

    I'd had migraines for many years, but had a hard time convincing any of these experts that what I was experiencing was not a migraine.

    I was finally diagnosed accurately by the head of neurology at the University of Boston. I was in his office with a huge stack of medical records thinking "here we go again". It took him 15 minutes to diagnose me and prescribe indomethicin. We had to tweak the dosage a bit, but I had near instant relief and eventually my headache remitted. It was gone until about 2 weeks ago. This time, however, I have indomethicin ready and waiting.

    HC had a devastating impact on my life. I still prefer to sit in the dark. My career is stagnant and I've lost important relationships. People have a very hard time understanding how traumatic suffering from this sort of unrelenting pain can be.

    I hope the occipital nerve block works for you, I was told that it has very limited success for HC. I would have gladly taken my chances, however, and if indometh stops working I will be in the hospital room across the hall from you.

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  72. hello to all HC sufferers out there ! I started with a left sided headache 6 1/2 years ago. I ve seen neurologists, ent drs, neurosurgeons and pain control specialists over the last 6 years and it was finally a professor from the Walton centre in Liverpool who diagnosed HC. I started taking indomethicin 4 days ago and I wouldn't say it has gone but it does seem alot easier already. HC has put alot of strain on my marriage, my career and my sanity. At times taking the shed load of useless medication I have laying around the house seemed like the only way to escape from the pain. I m still taking pregabalin as I m afraid to stop taking it as it does help a little. I just wish sometimes that work colleagues could be a little more sympathetic- because they cant see anything they don't realise how much pain I m in.

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  73. Hello!
    I have been suffering a severe migraine since october 11th 2009. 3 neurologists have done mri s and have told me 1. i have a chronic migraine they can do nothing for me and have to live with it. 2. you have a stabbing headache nothing we can do for you! 3. i dont know know whats wrong sorry nothing else we can do for you! So 14 medications later and finally a doctor ive waited a year to see today.has diagnosed me with hemicrania continua. All my symptoms make sense now and she totally understood what i was going through and what was causing it...now started on the meds tonight and heres hoping they work and i can tolerate them...hate the docs that make you feel like i dont know what im talking about or im lying about whats going on....

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  74. Sad to say but I am not surprised at all! Doctors have no idea what they're talking about half the time.. and I actually do believe that they think we're lying about our condition - you can see it on their faces.. their expressions... I really hope the meds work for you, let us know how you're getting on. Rest assured that all of us here do believe you - we'll all in the same boat.

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  75. hey permanent, the meds are working, the severe pain isnt as severe the last 2 weeks, i didnt have a episode tonight but didnt last long..the meds were killing my stomach so i eased up a little on the meds.but they seem to be helping..

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  76. If you are reading this, I'm sorry. You or someone you love is likely in pain and that is probably putting a severe strain on everyone involved.

    In 2005, my headache started. I left my fiance, which was a relief because our 3 year relationship had gone bad and neither of us wanted to admit it. I finally did and after a night of tears and stress, I woke up with a headache. 'No worries', I thought to myself, I have the rest of my life. I'm single. 3 Advil, a nice long bike ride and off to start the next page. Sadly, the headache had other plans.

    I'm now 36. I was 28. I', a 6'1, 180lb. white male with auburn hair and a good natural tan. I have a lanky/muscular build. I am a healthy eater - a pesketarian, a lover of spicy foods and rarely a drinker of anything more than a glass or two of wine. I've had the same injuries a skater/bike messenger might have sustained. All of my parts work pretty well.

    I had the same dull 5.5/10 headache with exacerbations that many of you have. It was usually something I could live with but it was always there. Someone else pointed out the frequent question "so do you have it now?" I've been (rightly) called sarcastic more than a few times and quickly got to answering "if I appear alive, you can count on it".

    I saw every doctor under the sun, endured years of painful and expensive tests. I was accused of seeking pain-killers, branded a hypocondriac, labeled insane. I've been fired by doctors, physical therapists and friends because of this sick bastard of a headache. The only concurrent theme was that there is nothing medically wrong with me.

    I got the HC diagnosis about 4 years ago but Indocine didn't do a thing for me. Nothing really did. Morning and night NSAIDS made me feel like a Mayan performing a sacrifice - does this work? Probably not but I'm afraid to stop. The only relief came from Ambien and that only lasted the 15 minutes before I fell asleep and woke up with a horrible headache.

    For about 3 years, it came and went. I gave up my corporate career and bacame a Respiratory Therapist thinking that helping others and working 3 days a week would help. I suppose I've been wronger at times, but not very many. Now people's lives rely on my ability to ignore a bad headache and "I couldn't intubate because my head hurts" will never fly. I've seen entirely too many cases of neuromuscular disease in otherwise young and healthy people which keeps me from getting the little relaxation I might otherwise have gotten. I've met many doctors (some very well meaning) and have realized that if you ask 100 doctors the same question, you're likely to get over 129 answers.

    Sorry for the ramble, brevity is one of many things I don't do well. I recently started another coarse of Indocine which seems to be helping. I was under the impression that if HC is hit by Indocine it goes away immediately, the sufferrer gets his life back and 'Dear Prudence' plays in the background. I'm trying not to hold it to such high standards this time around.

    Finding this blog is something of a double-edged sword. I'm not sure if it feels better to know that I'm not alone or to think that other people aren't suffering from headaches. All things considered, I have a pretty good life when I'm not existing to bear witness to an awesomely persistant headache.

    Whoever you are, I hope you are reading this out of pain. I hope you've found your medicine of choice. I hope it isn't something that requires a prescription. I hope whatever your version of 'Dear Prudence' may be, its playing in the background.

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  77. I am so sorry for all here. I pray that one day there can be help for us all.
    I am 56, and was 50 when headaches began.
    I believe the 5 year headache I have is hemicrania. Indomethecin 1 dose helped, but had horrible drug reaction. I take Neurontin and Nortriptylene and it helps somewhat. Even had cervical fusion done in hope the headache would stop. Didn't work, and now feel worse. Still no formal diagnosis, but applying disability as lost teaching job. This takes away so much of your life.

    Did occipital blocks - did not work
    oral steroids helped, but headache came right back
    cervical steriod nerve blocks and C-3 C-4 fusion - surgery made worse.
    hot tub and stretches - help for a whil
    dry needle physical therapist - help for a while
    Putting large bobby pins on very top of head helps a little bit.

    First, Does anyone else have tension headache that is bilateral, as well as the one sided constant headache w/stabs?

    Has anyone neck symptoms associated w/headache?

    Does anyone have one side of their head where the scalp almost always is sore?

    Has anyone tried tizanidine for help?

    I prayer Christmas finds us with a lower degree of pain, and still being able to be with loved ones.

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    Replies
    1. I just saw my neurologist about the neck pain today. She says that is a muscle spasm. I'm thinking that the tension from the chronic HC headache is now begetting this new and also very painful symptom. And I also am having this strange soreness on my scalp, although it seems to migrate around my head. But when it hits the occipital nerve area--watch out, the headache pain is about to really begin.

      Delete
  78. I also have this. It took a while to diagnoses, and I had good luck with the indomethocin for the last year. But they have started again. I'm a bit depressed about it now.

    I also find I get the urge to run away when I am at my worst. I also will have some violent outbreaks, mostly hitting out at people. Both of those are hard to deal with, but I have a loving family who helps.

    Has anyone else tried melatonin?

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  79. Recently diagnosed with this horrible malady. It took four hospital stays totaling 6 weeks. The last hospital I visited was Brigham and women's hospital in Boston, Mass. Had I gone there first, I could have eliminated some of the most intense pain I have ever experienced. So intense that I would pass out several times per day. Indocine has done the trick. I still have a headache every day but i can at least function. The key for me is to make certain that before I begin any type of activity, even before getting out of bed, I must take the med and be still for several minutes. This has made a huge difference in how I feel every day. Good luck to all who are suffering with this.

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  80. this is a long story and am,depressed about my future but its improving if theres a hell, it ain't much worse than what i've experienced
    I'm from Ireland, 20 year old guy.

    Completed leaving cert (same as American SAT) in 2008 did science in college, dropped in january 2009 and went through plenty of research to make sure the right choice

    October 2009: in college studying another degree, having the time of my life FINALLY after so much uncertainity before that,

    i genuniely could not have been happier, i was loving every moment and felt blessed my parents had given me a 2nd chance, great housemates, any first real girlfriend, great friends, a loving family, i'd finally come into my own after secondary school

    everything was in place and then i work on morning with a feeling in my left eye ONLY as if a contacts lenses was out of place.
    went to doctor after doctor, opthmalogist prescribed drops couldn't find anything wrong, eye feels if it has pressure, HEADACHE,dry pain, disorientated, i'm always in pain, groogy can't hold a conversation because of it, can't wear lenses in that eye, one said it was all psychological, and well lets just say i felt angry

    i used to be so bubbly and outgoing and this has totally stripped me of all energy, social life is gone to hell, people say"ah sure its just a headache" "you don't look sick"

    I was exams cos i can't focus and study for them(august repeats) when i know i've the ABILITY to learn but amn't able and i want to repeat the years in

    I feel the world just flying by people complain about the tiniest of problems, well i just think
    I've so much to give the world and this problem is absolutely holding me back and i'm afraid i'll be some old man regreting life's missed oppurtunities.

    Thank god i've supportive parents but i'm sure they're getting sick of my constant self loathing too and constant bills to consultants

    Its not that i don't want too help myself, its just i can't!!! I can't make progress no matter what i do!

    now i'm seeing a neurologist for hemicrania continua Let me tell you appreciate how amazing life is pain free, its a gift that i appreciated before, but really didn't understand in a literal sense (id that makes any sense

    I'm at home now, i took the year off as i SWORE I would not "just live with it", and go through another year of college like that, because its simply not a choice,i'm currently doing a amall college course in an area i'm interested close(i don't care if i pass or fail) but i find its very hard to relate to peers when you feel this way.

    your mind is constantly at war with the physical pain (not being melodramatic) nobody can truly understand how powerful the human spirt is when you must wake up and go to bed feeling the same the whole time, you

    But as awful as it is, it also taught me resevoirs of maturity,humility and i now really appreciate the extraordinary chances in every moment to be what we want and do whatever we can do (not being cheesy and I mean every word of it), I feel i have the wisdom of a 60 year in my 20 year old body and I REALLY will live every day as if its my last sunset

    and I know one day soon I'l be free and I REALLY will live every day as if its my last sunset and i could write a biography a mile high because of it, climb mountains, travel

    The only thing that really gets on my goat is the inability of people to appreciate boredom, "I'm bored", i appreciate all moments noweven if i can't participate fully in them , stop reaching for happiness in the future ! People have so much untapped potential and they don't realise it

    That was theuraputic!

    Next year, i hope to be a new man reborn, that'd be the most beautiful 21'st birthday i could ever get!


    I'm also glad to know there are other people out there like me especially guys!

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  81. I don't know if I have hemicrania continua, but I have tears rolling down my face reading all of your posts.

    The part where does it hurt now question generally makes me want to pick up a needle in stab the top of the doctors head.

    I describe my head pain as stinging, pinching pain on the top of my head that makes my scalp hurt and itch, and face numb with pins & needles (and at its worse as trolls on top my head with daggers and the jaws of life). I have had this pain since September 2008, 24/7. I have not had a day without head pain since then. Much like all of you, it is only the intensity of the pain that changes.

    I have offered to lop my head off and trade it in for a Miss Potato Head; if the pain came back just pop on a new head.

    No meds have worked

    I'm on my third Neuro. I've been to Mayo and John Hopkins.

    If I've learned anything else from this blog, is that I'm certainly not alone and maybe I'll go see the Dr. Mark Stillman at Cleveland Clinic.

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  82. My story sounds much like all of yours: I'm a 47 year old female. My headache started 11/1/11. Saw GP a week after-not a sinus infection as I expected, OK then- CT scan, Neurologist, MRI & MRA, spinal tap, all came out fine (3 bright spots on my brain though.) Meds, more meds & different meds. GYN (trial meds-age!!), ENT, Physical Therapy, chiropractor, 3-day hospital stay to try to break the headache, tried eliminating foods, Neurologist recommended I see a different doc (was I too fired?). Got a postcard from my eye doc "haven't seen you in a while". OK, even though GP & neurologist said "probably not a problem with my eyes", I went. Eye doc said he thinks I have HC. Referred me to a neuro-opthamalogist who has experience with this. Yes, I cried reading some of your blogs, and laughed at others. I am familiar with the "icepicks" and "insanity" and "nothing visibly wrong". But, for once I'm happy that there may be a light at the end of the tunnel! THANK YOU for starting this blog- I have NEVER blogged before and hate reading them until now, and read every one of them! Curious....anybody have dizziness or nausea with this?
    ~CathyP

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  83. Hi Cathy P
    Yes to the dizzy and the nausea. I am very cautious with my motions. If I move to quickly or am startled by something I get a dizzy spell which usually preceeds a crunching headache. Because of the meds which I take, I am also on a pill which helps with the nausea. At times the headache overrides the meds and I will pass out from the pain. Not to sound negative, I am much improved from when this thing started and getting better each day.

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  84. I do suffer from occasional dizziness and nausea, particularly when the pain is very bad. I have been suffering with this for about five years, and only got a diagnosis last year after going through three different Neurologists who kept telling me 'it was all in my head'. I am now taking Indometicin 50mg x3 a day, Amytripitline 10mg x1 a day, Citalopram 20mg x1 a day, and Verapamil 240mg x1 a day. I also recently had my first Occipital Nerve Block. It wasn't the complete relief that I hoped I would get, but it has made some improvement, and I hope that with repeated blocks, it may improve. Good luck to you all out there, I hope the New Year brings new hope and relief to all of us.

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  85. good to know. thanks! With me it seems as though if I'm on my feet too long I get dizzy. I have nausea meds too, so that doesn't seem to be as big a problem for me. THANKS again! and I am so happy to have this as a resource and sounding board. Happy, healthy 2012 everyone!
    CathyP

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  86. Can we all try to find a commonality here?
    *MRI showed 3 bright spots on my brain...
    *have Hemochromatosis & Fibromyalgia...
    *some arthritis in my mid back...
    *high blood pressure with certain meds...
    *both grandmothers had Alzheimers in their late 80s...
    *French Canadian descent...
    *4th of 5 children...
    *mother of a 21 yr old and a 16 yr old...
    *married...
    *built our house 15+ years ago...
    *have radon in our soil, being vented out...
    *have seasonal allergies...
    *had pets most of my life, but not allergic...
    *allergic to penicillin…
    *I have food sensitivities to wheat, dairy, grapes, nuts, but I don't follow any restrictive diet...
    *usually very careful with what chemicals I put in my body...
    *drink a few glasses of red wine occasionally, but nothing in excess, and nothing since this started...
    *I LOVE sweets…
    *I am about 30 lbs overweight...
    *never smoked or did drugs...
    *use "cheater" eye glasses (+1.25 so far)...
    *work in a nursing home, in admissions, some computer work & data entry...
    *worked mostly with children (1983-2005)...
    *live in the NE in the USA...
    *traveled to Canada a few times, the Caribbean twice, otherwise only the east coast of USA...
    *Doc wants me to do a sleep study because I can fall asleep any time of day...

    Can't think of anything else. (felt like I was putting info on a dating site!) But, maybe we can find a common link!
    CathyP

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  87. Just saw my "new" neurologist and frustrated as hell! He didn't read any of the paperwork I sent over on 12/23/11, or review any of my tests. Wanted to put me on the same meds I'd already been on without any good results! I mentioned Hemicrania and he disregarded it. Now on more new meds!
    CathyP

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  88. Cathy, when I first saw my Neurologist, I went armed with lots of information on HC and went through it with him, explaining the reasons why I thought that's what I had. It worked for me, so perhaps you should try that? Its quite a rare condition really, and a suprising number of Neurologists haven't heard of it, or had any experience with it. In an ideal world you would see a Neurologist who specialises in headache related illnesses. Basically you need to persevere and educate him. Good Luck!

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  89. Id like to thank this Blog !!! Ive had my headache now for 7 months ... all right sided with intermitant jolts of severe pain , stabing pain between the top of my nose and my eyebrow , i have seen a neurologist and had an MRI on january the 6th !!! I still have no results back ! aghhhhhhhhhh ! Its driving me insane , i have been on amatryptaline for 6 months and im now on gabapentin which helped for 2 weeks but is now not helping at all ! i really want to scream ! I am going to go to my gp tomorrow armed with my self diagnosis of HC fingers crossed !!!

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  90. You really need to try and get your GP to start you on Indometicin, if that works, then it is likely to be HC. When is your next Neuro appointment?

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  91. im on gabapentin joined with indomethacin,,and it has helped with the pain anonymous..both on each of their own didnt help but together it helps...9 pills a day but it helps..and started on a natural herb my new head doctor told me to start melatonin to help me sleep that i dont get and it knocks me out....

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  92. my doctor diagnosed me to have cluster headaches...

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  93. Hello to every-one who has these awfull headaches. I have had these 24/7 for the last 8yrs and have until January this year been told to take Ibuprofen. Having been told by several doctors that it will go away and a neurologist after 2 MRI scans that he coudnt find any-thing wrong I was beginning to feel that I couldnt cope any more and did not want to live the rest of my life with these headaches. Finally in January this year was told by a locum standing in for my doctor that I actually have a name for it. HC is the name and fighting it is the game. Indomethacin was prescribed and does help. Here in the UK why dont our doctors read up on these things instead of making us out to be imagining these dreadfull headaches. Take care all. Ellie

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  94. I just saw this on the Mayo Clinic website through a link from Blue Cross/ELCA Embody Health (my insurance health website) It is ME! I have had the "pressure" headache that never leaves for about 10 years. It gets worse sometimes and better and then worse. Right now I've had a bad headache for 10 days. I got better on topiramate for migraines and chiropractic adjustments and massages when I got worse after a couple of years of being somewhat better. But, yes, I still ALWAYS had the pressure on the left side. I also am congested on my left side most of the time and have a droopy eyelid. That droop is something hereditary. My dad had it as did his mom. I wonder if these headaches could be hereditary. My left eye sometimes waters a little, but not much, but I have red ear syndrome, which is also rare. I can't take anti-inflammatory drugs because I donated a kidney and they are hard on the kidneys. I used to take naproxyn at the slightest sign that the headache was increasing and it would help. I bet that it is because it is this kind not a migraine or a cluster, although imitrix does sometimes help. I think that I have the migraine triggers, too, and tension headaches, too. Who wouldn't, though, if you have a headache and can't get rid of it? I bet we all do! WE

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  95. I think I have HC too. The only symptom that is different from most on this site is that my pain is not just on one side. It is in the middle of the lower back of my head. Sometimes I have severe pain on the right side behind my ear. But I definitely have continuous head pain that without indomethicin would be debilitating. I take omeprazole for my stomach. I am hoping that the medicines continue to work without side effects. Good luck to all of you!

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  96. It is so nice to read all these comments. I to have been suffering with constant headaches for about 2 years. I originally lost the feeling down the whole of my right side and they said I had had a stroke, then after MRI scan and tests decided no it was migraines i was suffering from. Prior to this I had had a couple of migraines with aura and then banging headache and feeling sick which i classed as a Migraine. But these constant headaches was different it just didn't give up from the minute I opened my eyes in morning till i went back to sleep at night. It was so bas sometimes that my right side of my head was completely numb and all down my face, which then effected my ears etc. It really was getting me down. I was then told by the neurologist i was suffering from tension headaches and migraines. I was taking amitriptyline for the past year or so. It did not help me at all. It just made me feel heavy headed in the mornings and to be honest a bit low. So I decided to stop it and went to the Health shop who suggested taking a Vitamin B tablets, which I have done for the past 2 weeks and to be honest Have felt a bit better. I have now today been back to my neurologist who today has suggested that I have Hemicrania Continua and has prescribed me Indometacin which I am hoping suits me and helps me. I feel for you all I know myself how low it can get you and sometimes feel nobody listens and you just want to end your life as the pain is so debilitating. I just hope one day I am pain free.

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  97. Gosh! I think I have the same problem - (the HC). I have a constant headache for the past 26 years now. Right at the centre of the head. Throbbing pain. Constant day and night as long as I am awake. I have been through different medics. At some point I a doc gave psychiatric tables which unfortunately took for sometime without any help and stopped. I have done ct scan and MRI in india but htey saw nothing and the pain continue as usual. I came back to my country and decided to see a renowned nerologist and he seemed to not know what exactly I was suffering from he then told me that I may have been just confused and that the pain is just imaginary. My family has to take a brunt of hearing me complain everyday that I have a headache problem. Sometimes they do understand and some time they get fed up with it. Thank God that I have seen this site. At least to see that there are some other people having the same problem. Not ony me as I thought before. And at least here I wouldn't be told that you are just pretending that you have pain. I don't really have the other symptoms like the nose issue but I had nausea but had stopped sometime ago. Why? I dont really know. I think of going back to the neurolost and show all this information to him but reading about the side effects of indomethacine ( that it affects the stomach and the kidney) I get a little scared. Bu the pain is intollerable.....

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  98. Hi Hopeful. I am so sorry to hear about your distressing experience. I know how awful it is to have people disbelieve you, and to tell you it is all imaginary. You absolutely must go back to the Neurologist, and talk to him about the information you have found. That is what I did, and my doctor was fantastic. He referred me to a specialist in HC, and I am now being looked after. Indometicin is not the be all and end all. There are various other treatments your doctor can try. I have been taking Indometicin for about two years now with no side effects, so I am lucky, but you can't know unless you try. If that doesn't work, then they will try you with something else. You have to keep fighting, don't just give up and suffer. The benefits will by far outweigh any negatives.

    Good luck to you, and let us know how you get on.

    Michelle

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  99. Hey guys, I've been experiencing constant, very localised head pain for about 7 months now on the right, and every so often of the left side of the head, but none of the other symptoms described (runny nose, stabbing pains, drooping eyelid etc).I was just wondering if any conformed HC sufferers could describe in further detail what their pain is like (e.g. whether it's a throbbing pain, and/or how severe the headaches are generally), or if they've come across any similar conditions that I may be experiencing?

    Thanks,

    Callum

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    Replies
    1. I have been DX with Hemicrania Continua and I am also Indomethacin responsive. My pain is localized to my left temple, area in front of the left ear/behind temple, behind left eye, and around temple area.

      My primary complaint are the stabbing headaches that are relentless. Those stabs mesh with a constant throb. I do NOT have drooping eyelid, watering eyes, conjunctivitis, etc.

      Indomethacin takes away my pain except I get a "crawling" sensation in the affected area. Indomethacin efficacy for me is between 4-11 hours with a 25 mg dose. I do occasionally get slight break through with twinges of pain.

      Ibuprofen also has an effect on my HC. I can take one 200 mg of Ibuprofen and be somewhat pain free for 4-6 hours.

      My headache severity ranges from 4-8 daily on a 10 point scale when I am not taking medicine. There is absolutely no rhyme or reason when the pain spikes or subsides during its daily course.

      I hope this helps. I am a 35 year old male.

      Delete
  100. in the u.s. we call it Central Nervous System vasculitis (CNSV) of the head.....life altering diagnosis

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    Replies
    1. That is not the same as Hemicrania Continua.

      Delete
  101. Aah! I am glad that I found your blog where people can understand what we are going through. I have been experiencing this persistent 24*7 right side headache for the past 8 years. Not a second goes by when it odes not remind me of its presence. I am beginning to learn to live with it as something that will accompany me to my grave. The only time when I am at peace is when I am asleep, something that I get for few hours every week. There's a lot I want to talk about but those things have already been expressed by others. Love you all.

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  102. 35 y/o make with HC. 12 years. 9 years remitting and 3 years chronic. Sought treatment at a teaching hospital when the disease went chronic and they had it diagnosed within 15 minutes. GPs and community hospital neurologists were of no help in the preceding years.

    Hang in there. Life is hard.

    One thing I have read several times are peoples fear for taking some NSAIDs for fear of "xyz". Well, I hate to break it to everyone but one day we will all die and living in fear of medicinal nsaid use for relief doesn't add up. I do what I need to do to live. I'm living and not being anxious for tomorrow. Tomorrow will worry about itself.

    I pray for you all daily. Just wanted to chime in since we are all part of this clique. You can live. You can make the most of it and not worry about potential side effects of medicine. I see some of the same posters on different sites talking about their reactions to nsaids but there are those of us like myself that tolerate it just fine.

    LIVE

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  103. I had to laugh when you mentioned the usual stupid question doctors ask. I've been to numerous doctors for my constant, year-and-a-half-long headache, and they inevitably ask me, "When did this headache start?" I tell them November of 2010. They say, "No, no, I mean when did this headache start." "November of 2010." "I don't think you're understanding the question." "I don't think you're understanding my answer." Sigh. I had no idea this was an actual condition until today, actually, and I'm delighted to learn that there is a drug that helps people with HC. Lord knows I've tried everything else... It's amazing what a little research in the right place will do.

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  104. Hi Everyone, I have been suffering with chronic HC for about six years now. I am on various meds for the pain, including Indo. I have been having GON blocks which have some limited success.

    I have just found out that I am pregnant with my first child, and we are over the moon! The downside is that I can no longer take any of my medication for the duration of the pregnancy. As you can imagine, the pain is hell. I am trying to cope as best as I can, and just know that it is going to be worth it in the end. I will continue to have my GON blocks, which give me some relief.

    Good luck to everyone else. I'm glad that we have all found somewhere to come together and share our experiences.

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  105. Yvie, London19 June 2012 14:05

    Hi, I'm a 40 year old female Londoner, who has been suffering from HC for over a year now. I was diagnosed with HC about 6 months ago, and given indomethacin by my neurologist, which worked almost instantly... to my great relief. At the same time they did the MRI scan and CTA scans, they also discovered that, in addition to the HC, I also have 2 brain aneurysms - which was really bad news.. as I had no idea about them... but apparently they are not the cause of the extreme head pain. The neurologist will monitor these on a 6 monthly basis, and take a view at a later stage and decide whether or not to operate.

    My neurologist had hoped that a 2 week course of indomethacin (25 mg - 3 times a day) might "kick the HC into touch" and reset the problem. He didn't want me to stay on this too long as it has bad side effects and can rot your stomach lining.

    Unfortunately, this did not happen, and as soon as I stopped taking indomethacin HC came back with a vengeance. This time, my neurologist has put me on Topiramate (25mg, twice a day) as it's a drug that can be tolerated over longer periods.

    However, 3 months down the line, the level of pain I am suffering with HC is almost as bad as it ever was - pain on the left side of my head, to the back of my ear and sometimes to the left of the crown of my head. I will have to make an appointment and return to the neurologist to see if my dosage can be increased as I cannot tolerate this pain much longer.

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  106. Hello to everyone who has posted on here. It seems like you have all been through the same hellk that I'm currently living. There are days when I simply want to end it all. I suspect that I have HC and have just started a course on indomethacin, by self-medicating. I ignored my neurologist last year when he suspected I had HC and did not complete the course of indomethacin which he prescribed because I was convinved that the excruciating pain in my left eye was a mechanical problem with the eye itself. The pain is so severe I can't look up and it feels like a burning sensation on the muscles. My eye does not water or look puffy, though the pupil in my left eye (with the pain in it) sits higher thatn the pupil in my right eye. I wonder if nyopne can tell me if this is a symptom of HC? Also how long should we take the indomethacin for and at what doseage? I recall my neurologist saying to build up to 225 mg daily. Is this right? Thanks. Marie.

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  107. After suffering from migraines for over half of my life, my doctor finally sent me to a neurologist. This was only after I went to him and presented a self-diagnosis of hemacrania continua. Every time I had seen him I had mentioned that my headaches were refusing to go away, and yet he never once offered me any medication to prevent or treat the pain I was experiencing. Since starting to see this neurologist (8 months now) and being taken off indomethacin which I had specifically requested, I am back to a near constant dull pressure with the sharp random stabs into my head. The neurologist has declared it to be chronic daily migraine while his PA insists that I just don't sleep enough and caffeine can cause 'headaches'.

    Reading so many posts from others who have faced the same diagnosis difficulties as I am currently is a breath of fresh air though. Perhaps when I see the new neurologist (in 3 months) they will actually listen to what I have to say. Oh well, back to my headache diary.

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  108. Greetings to all
    I had posted a comment here on Jan 2 2012 describing how good I felt after finding the right facility to diagnose my HC. Since that posting, I have made at least 10 trips to the E.R. with worsening symptoms. I was responding to the indocin but was only able to get to a pain level of 5 on a scale of 1-10. The neurologists tools are limited to the meds. The meds were affecting my stomach in a very bad way, so the neurologists prescribe another pill to help with the stomach. On and on we go. Research led me to a surgeon in Maine of all places. His background is plastic surgery ang migraine treatments. I sent my records to him and he was surprised to see that of all the CT scans of my head that there was a specific scan not ordered. I was prescribed this specific scan and sent the disc to him. What happens next is nothing short of life changing. I received a call from the surgeons assistant and was informed that I NEEDED surgery. This scan revealed multiple issues with my occipital nerve and problems with my sinus. It was determined to be a classic case of occipital neuralgia. These are the words of the DR.
    I responded to my neurologist with this information and she would not support any type of procedure saying it was experimental. My god!! so were all the meds that were being shoved down my neck. Needless to say, I had the surgery on July 12 and I am absolutely free of headaches and the surgery was a breeze. I would estimate that the insurance company has invested $750K with the misdiagnosed HC. This procedure cost 6K. Now the insurance company is refusing to cover. It was the best 6K I have ever spent. I am now convinced that when it comes to my own health, I need to think outside the box. God Bless the neurologist for what they do and damn them for what they don't do. LISTEN!!

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  109. Greetings to everyone at this post.

    I am new with this NC and am currently trying the meds. I hope I can tolerate them. I have never heard of this until today and have been suffering with migraines for the past 18 years. I need to be more proactive with my medical care, but I have an issue.... my pain tolerance is very high and so when I was asked if I was in pain...right now...well I am always in pain, but I have learned to ignore it to a degree. I have had such sever pain that I just think that my head would explode... it is not fun and I loose days of my life with my family and my friends.

    I do not know the answer, but I hope this will help. I have a cyst in my brain, but all the doctors say it is not the reason for my pain... who knows. I will keep asking and keep searching until I am as lucky as some of the people who are pain free.

    I am so aggravated when the doctors do not really listen to what I have to say, I just wish they could experience this pain, if only for 36 hours so they would know how I feel. Then help would come....

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  110. Wow I cannot believe i found this website....I have just been diagnosed with HC after 2 years of incorrect diagnosis. Today was was first day I found a doctor who listened to me and didn't think I was overreacting and being dramatic. I was told I had cluster headaches and have been on steroids, topomax, beta blockers, imitrex...you name it. Nothing helped the pain. I am pain free today only because my headaches seem to go in cyles. Usually I have pain every day for 1-2 months then I get a break a for a few months and then it comes back. My doctor presribed Indomethicin although I don't have to take it until I get another cycle. He also told me to take about 12 mg of melatonin every night before I go to sleep....has anyone tried that and does it help?

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  111. I too am one of you. Been through all the meds (except Indomethicin) until seeing a specialist 300 miles from home. He described my symptoms to a tee and I am finally optimistic that I am on the right path. He also listed a couple other approaches to this problem in the event the med doesn't work. He listened, he answered me, and gave me hope and I am so thankful. I was also diagnosed two years ago with Fibromuscular Dysplasia (bilateral carotid) and it is uncertain whether it plays a role in all this but he wants a current MRI to review its progression. There are bulges and narrowing in various parts of the arteries and he said it is possible I had a dissection in the past and the headaches are a result of it. My younger sister had a subarachnoid bleed a few years back from the same thing. The last option on his list is to do a occipital nerve block. I'm hoping it doesn't come down to that but I would be willing if all else fails. As with others, my dr also mentioned eventually taking melatonin. Good luck to you all and thanks for sharing.

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  112. So many of these stories sound the same as me. Years of BS, finally found a doctor who put me on indomethacin and I've been better ever since. SOME days I have a bad bought, but I'm directed to take an extra, which helps. I have to constantly pop heart burn meds though because of it.

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  113. Cindy, the Occipital Nerve Block is definitely worth a try. It is not a scarey as it sounds, although it is uncomfortable. I have had the proceedure twice now. Its very quick to do, basically they inject local anasthetic and steroids into the occipital nerve in the back of your neck. It only takes a couple of minutes, and it stings like crazy, but its no worse than that. I had a sore neck for a couple of days afterward until it settled down. For me, the injection took a couple of weeks to start working properly, and then it lasted about six weeks before it started to wear off. For some people it does last longer, so its just trial and error really. Don't be afraid to give it a go! Good luck xx

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  114. My HC was not spontaneous, I know exactly what caused it. During my last year of college I was constipated for a while and I was often strainging very hard during bowel movements. One day I strained extremely hard and from then on I had constant pain behind my left eye with stabbing sensations when provoked by bright lights, bending, lifting normal every day objects, etc.

    I saw an eye specialist and had an MRI so that I could confirm that it atleast wasnt something detrimental such as a aneurysm or something. After the MRI was negative I concentrated on getting through the last year of college. Then when I went to live with my parents after college I spent most of the next 3 months sleeping day and night (not because of the headaches but because i was physically and mentally exhausted from all the years of college. After these 3 months I realised that the headache was somehow gone and I took it for granted. I took a job at the hospital and a few months later I again had an episode of constiaption and I strained really hard and IT INSTANTLY CAME BACK. I was very deperessed and discouraged because it wasnt going away. Its been a year now that I've had this and after so many nights of researching the internet I finally got the idea to search "Valsalva Headaches" (Valsalva maneauvre) being the thing that cause the permanent headache. ALL this time I thought I was the only one suffering this strange thing but within the last couple days have discovered all of you with the same thing and that it actually has a name, hemicrania continua. I'm so happy just to know that it has a name which means im not the only one with it. I'm on my first week of Indomethacin right now just taking 25mg, 3/day. It hasnt started to work yet but I'm hoping that when I double the dose in a couple days that it will work and I will be able to function again. Wondering if anyone else caused their permanent headache by straining themselves. Thanks and hope everyone can find a cure for their mysterious head pain.

    Even though the medication hasnt started to work yet do you think there is still hope that it will work when the dosage is increased? Also how many weeks does it take usually for the headache to get better. Thanks.

    -Gab

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    1. Indomethacin 25mg x 3 times a day provided instant relief for me within 2 hours on my first dosage. I have more of the stabbing headache association of HC. Good Luck!

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  115. I've doubled the dose and still no sign of relief, this is very discouraging...

    -Gab

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  116. I can never find anything that comforts me when I struggle with my pain. Some people have said I just need to get out more and ignore it. It's hard to do some days when I have anxiety about driving too far from the house and then finding myself in need of lying down quickly from pain. Also most people can lie in fromt of the TV, drink a hot tea, eat something or read a magazine when they are feeling under the weather....I don't know about the rest of you but these all become like a chore when there is a headache involved, especially one that is unremitting. It's hard to want to live another day.

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  117. Chronic headaches and Migraines can be an undiagnosed lyme diease. Worth reading about.

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    1. My girlfriend has Lyme Disease. Please anyone with chronic pain, headaches, fatigue should look into Lyme Disease...it is a detrimental disease and the sooner you can diagnose and treat the better. History of tick bite or rashes. Ticks are spreading all over canada. Message me if anyone has any questions.

      also a link:
      http://canlyme.com/

      -Gab

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  118. I have suffered from what I believe to be HC for about 25 years. For most of that time I found relief with Indomethacin. However, my kidneys finally started to show the strain last year and I needed to get off Indomethacin. I tried different medications, accupuncture, oxygen, chiropractor with no success. Finally went to a naturopath just to say I had tried everything. Found out I was allergic to wheat and dairy. 4 days after cutting those out of my diet the headaches were pretty much gone. I try to tell anyone I can, to see a naturopath if suffering from headaches. Hope this helps!

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  119. Like many others on this post my HC was firstly misdiagnosed as migraine. HC first started on xmas eve 2010 and i ended up in A&E 3 days later with continued head pain on the right hand side of my head and vomiting as the pain was so bad. After a 2 day stay in hospital and 3 failed Lumbar punctures i was told it was migraine. i was given amatriptaline which gradually built up to 8 tablets a day with no relief. After that i was also given topimax - slight relief but awful side effects including anxiety attacks - propandol - no relief. Amatripaline - no relief. It has only been in January 2012 that my neuro decided on a whim to try indomethcin to see if the headache is responsive. The relief compared to everything else was huge. As soon as i stop taking though the pain returns with a vengence - almost worst. I have had regular kidney function testing and on occasion have had to be treated for kidney infections whilst on Indometacin. If i am very stressed i still get pain. I am currenty 3 mmonths pregnant and therfore have had to come off medication. The pain is unbearable again. I have tried steriodal trigger point injections in the back of the head since being pregnant but it doesnt seem to have made a difference. Does anyone in the UK know of any specialists or research that is taking place?? i feel that an end is not in sight. I will not be breast feeding my baby when it arrives just so that i can return back on the indomethacin :( i feel selfish making this choice but i think as a new mum i would not cope with the pain of HC - the lack of sleep and no medication :( - my best wishes to all of those who are trying to cope with this terrible condition.

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    1. Hi Lauren, I am also pregnant and suffering with HC. I started getting severe headaches and pain about seven years ago. I went through lots of different doctors telling me it was migraines and stress related headaches etc. I tried so many different medications, I can't remember them all any more. I finally met a neurologist, Dr de Silva, about 2 years ago, and he diagnosed me with HC. Since then I have been taking Indometicin, Amytriptiline and Citalopram every day with some success, but not complete relief. He now believes my condition is two-fold. He thinks I have HC and also Autonomous Trigeminal Cephalalgia (SP), which would explain why the medication isn't completely effective. I spent a week in hospital in April this year having tests and scans, and there is now a theory that there may be a blood vessel in my brain 'interfering' with a nerve, which could be causing the problems. They had tentatively started talking about the possibility of surgery when I fell pregnant. I stopped taking all medication immediately, which of course made the pain unbearable. I have since then been having Greater Occipital Nerve blocks once a month to help with the pain. It isn't completely effective, but it does get me to a point where I am able to work and function relatively normally. I am not sure what will happen when I have the baby, they refuse to talk to me about their future plans for my care at the moment, so whether or not the surgical option will be re-visited is up for discussion.
      I really feel your pain, and understand exactly what you are going through. I don't know if you have come across it before, but there is a group on Facebook called Headache Warriors. Its a support group for people like us, and its really good. If you want to get in touch, my email is michellelisa_tindall@hotmail.com

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  120. I have now been prescribed nortriptyline, is this apropriate? Has this worked for anyone? Seems strange that an antidepressant would work for headaches. And is this a cure or just for relief? thanks.

    -Gab

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  121. My name is Brad and I started right-sided temporal headaches about 8 years ago. This is a constant aching that ranges in pain level from a 4 to a 7. I had wisdom teeth out,eyes checked, cat and mri scans, accupuncture, hypnossis, several TMJ tests, chemical nerve blocks and saw several doctors. No one knew what was causing the head pain or what type headaches they were. After reading several websites, I thought it might be Hemicrania Continua. Four months ago I was able to start going to UCLA to find help.After seeing 5 more doctors and many more tests, Iwas told that this probably was H.C. I have tried indomethacin,capsuls,cream and suppositories. It took away my headaches immeadiatly but made me very sick ofter 4 doses. Threw up my guts. I get very sick each time I take it. Doctor said I’m alergic to it. I also have Crohn’s witch doesn’t help.
    Last week UCLS performed Stereotactic Radiosurgery on my trigiminal nerve. So far no change or help from procedure. Doctor says it might take up to month to help, I don’t understand that.
    My reason for writting is to ask if anyone has foun d any other medication that has taken away the pain. I have lived on tylonal, celabrex and some vicodin for the past few years. These meds are no longer working, as my body has become tolerant to these meds. What have you found to help take away the constant headaches? Thanks….Brad

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  122. Have any of you tried occipital nerve stimulation with a bion device? I read about it and looks like it has a 70% effectiveness?

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  123. Very interesting possible treatment...

    Headache. 2006 Jul-Aug;46(7):1203-4.
    Melatonin responsive hemicrania continua.
    Rozen TD.
    SourceMichigan Head-Pain and Neurological Institute, Ann Arbor, MI 48104, USA.

    Abstract
    Hemicrania continua is one of the indomethacin-responsive headache syndromes. There are very few effective alternative therapies for hemicrania continua, thus patients may require daily indomethacin for years. The risks of long-term indomethacin include gastrointestinal and renal dysfunction. Melatonin is a pineal hormone with a chemical structure very similar to indomethacin. Recently, melatonin was shown to be effective for primary stabbing headache, another indomethacin-responsive syndrome. Three cases of melatonin responsive hemicrania continua are now reported.

    http://www.ncbi.nlm.nih.gov/pubmed/16866728

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  124. The patient was started then started on an initial dose of Melatonin, five mg every night at bedtime, in place of indomethacin. He began to see immediate improvement in pain. His dose was adjusted to seven mg every night at bedtime, and he became headache-free (at the time of the case) for five months. As soon as the melatonin was stopped, the head pain began again in 24 hours.



    These cases may be helpful for patients with hemicrania continua to discuss with their doctor if their current regimens are not working. Melatonin, Celebrex and gabapentin may certainly be worth a conversation. Remember, it is up to us to be an active partner in our health care.

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  125. I am pleased to see that there has been mention to the Occipital Nerve. I was diagnosed with Hemi Crania November 2011. The Neurologists prescribed Indomethacin which was not effective. Confident with the diagnosis they proceeded to prescribe more and more alternative meds due to the side affects that come with indocin. I can't agree more that you have to take some proactive steps when it comes to your health and the care being provided. Research led me to a Doctor in Bangor Maine whom finally got to the bottom of my condition. Prior to having a headache, I had a very minor fall. So insignificant that I payed no attention to it. I had nerve blocks, stimulation, and a daily diet of pain meds. All of which were not preventing black out episodes due to pain. This Dr. from Maine was able to diagnose a damaged occipital nerve and correct the problem with out patient surgery. I literally walked out of the hospital headache free and have not had an indication of any type of headache. There are 4 regions throughout the head that are triggers for what has been assumed to be migraine related headaches. Neurologists have a limited tool box to address a migraine headache and not to offend, they don't think outside the box. Search for Dr. Branch in Bangor, Maine. Had it not been for his interest and his practice, I am certain that I would still be living with constant pain. By the way, my Neurologists did not support the surgery nor did they like the taste of humble pie when I told them that I am headache free. Most Neurologists will tell you that they, don't really know what causes migraines. It may be a complicated problem but the solution at least in my case was a simple procedure.

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  126. Hi, Im 16 and was diagnosed with Hemicrania Continua a few months ago. For awhile I was experiencing constant throbbing pain in the back right side of my head. I would get stabbing pains shooting from the back of the head to my front forehead a couple times a day that would last a couple seconds. I was also getting sore spots on the right backside of my head that would trigger intense pain if touched even if it was just resting my head on my pillow. I went through MRI'S on the head to rule out tumors and then was put on Indomethacin, 25mg 2 times a day. After taking it for a few days it completely took my headaches and pain away. The neurologist asked if I had ever had any of the other symptoms of HC. I then noticed that indeed I had, ever since I was a baby i have always had a droopy eye whenever i smiled on the right side. Who knows maybe I was born with it. But thats my story, thanks. -Rachel

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  127. For anybody suffering and having trouble getting a diagnosis, I highly recommending visiting the Mayo Clinic. I grew up outside of Rochester, MN and was lucky enough to have my primary care physician at Mayo Clinic. My primary was the one who originally diagnosed me with HC and sent me to the neurologist who confirmed the condition. They are all brilliant doctors and worth a look. There are clinics located in Scottsdale, AZ and Jacksonville, FL - the the one in Rochester, MN is the original and definitely the largest facility.

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    1. Dear Mayo Clinic enthusiast,
      Did the doctors there do anything to help your HC (besides possibly giving you indomethacin)? Did they offer any other alternative therapies/treatments for the pain? I have suffered with CPH for years and am lucky that indomethacin works for me most of the time; however, I am always looking for ways to get off the med.
      Thanks.
      -CB

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  128. After reading all of your comments, I am convinced that I am eligible for membership in your club! First I must express the empathy that I have for all of you. My headaches began when I was in 8th grade. I remember watching the clock and waiting for the final bell so that I could get home, take some aspirin and rest. My dad, a wonderful guy who just could not comprehend what I described, would tell me " You're a beautiful healthy girl and you do not have headaches." This just added an additional level of guilt and self doubt. They surely felt like headaches to me! Mom was an RN. She took me to an allergist, he asked if I was happy at school and if I had any friends.

    WE were really moving in the wrong direction!

    Fast forward to 2013...
    I am 65. I have had facial pain, pounding on the top of my head, drooping and tearing eyes etc etc. forever. When my body does not have enough stamina to get over the hump...and reach the other side of my pain, ( my metaphor for getting enough relief to go on...it feels like climbing the most challenging mountain) I end up in the ER. Last visit was a few weeks ago. I get treated for migraine and or clusters, and I know that is not the culprit but the docs have to give a familiar label...an IV of Depo-Medrol, which is a heavy duty anti-inflammatory drug, sumatriptain, and when the doc asks what pain meds work, I reply "gimme Anything with an ...EINE at the end of it!"

    I go home with the usual suspects: a script for more of the Prednisone family and the words of caution, and a small amount of Vicodain. Ususally I loose a few days to sleep and get some relief. Within 2 weeks or less the pain is back in full force all over again.

    I have had all the tests, scans, etc. I drive to Mexico and buy Lidocaine for injections and also in ointment form. I take the injections when the pain is just unbearable. I dab Lidocaine on to a Q-Tip and place it into both nostrils and my ears. The numbing effects seems to interrupt the pain briefly. But it allows me to reduce the pain level so that I can function briefly.

    The ever present pain on the top of my head...as well as the other symptoms described, lead me to believe that this is Hemocranial Continua, now I have to convince a doctor who accepts Medicaid patients to treat this!

    Hoping that the creative powers of the universe are on my side. lol And I do feel hopeful even with the ever present symptoms!

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  129. Almost 9 years I have had this horrible HC! What more can I say here that every one else hasn't? I am only a shell of who I used to be.

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  130. Thank you to the blogger who originated this online conversation/empathy session/therapy/information sharing. My son has had 'migraines' for 2 years now that does not go away. We went through a series of doctors and test. Today someone mentioned HC to him. From the little bit that I read, this may be his condition. I hope and pray the local neurologist would listen when I present this condition. And yes, why don't the so-called experts know about this?! Anyway, thanks to you all.

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  131. I never knew that there were so many others that suffered with HC along with me. I have been having headaches for over 14 years. Been told they were everything from migraine early on to rebound then proxismal. Four years ago I received the diagnosis of HC. This is after 7 GPs and 3 neurologists . 12 years ago I was given Vioxx to releave the arthritic pain I had in my hip and hydrocodone for pain because the aspirin I had taken were thought to cause rebound headaches. 20 min. after taking the first
    Vioxx the headache that I always had was miraculously gone before the
    arthritis. Never had to take the pain pill at that time. When I asked the Dr. if I had arthritis inmy neck or jaw I was laughed at. He was not concerned with why the neadache stopped. Was told to take the Vioxx until summer andnot to take aspirin. Headaches started to come back as soon as I was off the med. The next 3 Dr. I saw all said the headaches were rebound after reading my history, I don't think they cared about how much pain I was in. After running the gamet of tests with every new Dr I saw dentists, eye dr. acupuncturist. Every fall I had Vioxx and headaches went away. I could even fo out and have a glass of wine without the immediate headache. New neurologist said I had proxismal headaches and after Vioxx was taken off the market prescribed indomethacin 75mg 2x aday. Took it for years. Then that med caused HBP and gastro problems. Was told to quit the indomethacin or they would pry the bottle from my cold dead fingers. I got the hint. Had to get a new neurologist and again I go through all the tests and try all the different kinds of meds. Finally diagnosed with HC. Was told there is nothing they could do now that I cannot tolerate indomethacin and should look for a new dr with more ideas. Now I take Lyrica, Cymbalta, propanolol, and lysinipril nothing seems to help I have headaches every day all day. And when I get one that hurts so bad it feels like lightening bolt is striking the inside of my skull I take hyrocodone. Praying that someday someone will care enough to find the cause and give all of us who suffer with HC a miracle.

    RG

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    1. I just got done reading every single post on this blog. WOW! I am convinced that this is what my daughter has. Other than a brief period of time 2 summers ago (after receiving some non-manipulation style chiropractic care) she has had a continuous headache/migraine for over 3 years now. She is 17 now. It started when she was 13. I can't believe I found this information. She has been diagnosed with headaches, migraines, chronic daily headache. She's been through a full EENT workup in the very beginning because this all started after a sickness, which at the time everyone thought was a sinus infection. In fact, we both got sick at the time and had the same exact symptoms! I was about 2 months pregnant at the time with my 3rd child. Our symptoms were: sinus pain and drainage, a horrible headache that kept us stuck on the couch or in bed, dizziness and vertigo, sound sensitivity, light sensitivity, and extreme sensitivity to smells. My symptoms actually cleared up after about 3-4 months and hers did not. She wasn't as dizzy and she didn't have the sinus drainage anymore, but the headache literally has stayed with her ever since.

      They did the who EENT workup: sinus CT, medicine, allergy testing. NOTHING! Then we headed to the neurologist. They ordered a head MRI and started her on meds. The MRI showed a chiari 1 malformation, with 5mm of cerebelar tonsil herniation. But of course they never even told us about the chiari at that time. I guess that they thought that it wasn't significant! (Going to end this post here because it said that it was too long! Will continue on the next post)

      Signed, Dedicated Mom.

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    2. Fast forward 3 years and here we are with the same symptoms. In fact, we just found out about the chiari 1 malformation about 3 weeks ago and that is what got the ball rolling. I became a google research expert. I started with the "chiari" and went from there. Luckily I found some really good forums and informational sites. There are a lot of "related illnesses" that go with chiari. I found out that I am pretty sure that both my daughters and myself (&-definitely my mom) all have Ehlers-Danlos Syndrome. (This is a connective tissue disorder).

      This makes sense finally! In addition to the debilitating headaches my daughter has suffered from horrible foot pain in both her feet. They said that she had flexible flat feet. They tried an implant in her foot that didn't work, then took it out. Those were the first 2 surgeries. The second podiatrist who agreed to take out her implant also then agreed to perform reconstructive foot surgery on both of her feet. So, during the time of this horrible headache she went thru 2 foot surgeries, 8 months apart, with very extensive recovery periods that included no weight bearing for 6 weeks, then a walking boot, etc. Oh, and she also dislocated her knee before the surgeries just dancing around in the living room, doing normal moves that should not have caused any problems. All of her doctors were aware of her complete history. She had been to pediatricians, orthopedic surgeons, EENT doctor, and neurologists. NOBODY put it all together to diagnose her with EDS. I had to do this with my internet research. So frustrating!

      So, I also came across other illnesses that I suspect she may have, such as POTS, positional orthostatic tachycardia syndrome. This causes lightheadedness and dizziness, and irregularities with BP and heart rate when you go from laying down to sitting or standing. She has an appointment with a cardiologist this week to test for that. (POTS is considered a subset of dysautonomia by the way.)

      Then, because we have been talking about her headaches, I had her describe them to me again. This is what she said, "I have my headaches all the time. They never go away. Sometimes they are really, really bad, and sometimes the pain isn't quite as bad. They are usually on the left side of my head and behind my eye(s), but sometimes they are on both sides. I have sensitivity to lights, sounds, and smells." There were 2 specific times when they got so bad that her left eye started doing this continuous twitch and she couldn't open it at all. The doctors gave her narcotics, but they just gave her rebound headaches. Both the times they were that bad they lasted for WEEKS (as in MONTHS).

      I have to end here once again because my post is still too long. Will continue with the next one.

      Signed, Dedicated Mom

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    3. We have had people tell us she needs therapy. One doctor had the nerve to tell us that we BOTH needed therapy. Of course we do!! My daughter is in extreme chronic pain that nobody can fix and I have to stand there and watch her in pain, knowing that I can't fix her either! How is that supposed to make me feel! I am the only one in the world that has always believer her and has done everything I can to help her. I even quit my teaching job so that I could be home with her more and take her to doctor's appointments.

      We just started the Indomethacin (50 mg, 3 x day). She has had 4 doses now. Not sure if it is helping yet. She is actually really sick this weekend so she is hurting everywhere. I am hoping that the medicine works. No, I am praying with every fiber of my being that this medicine works and we can have an official diagnosis of hemicrania continua, or HC.

      I am not going to give up! I have listened to everyone's experiences on this forum. I am armed with information and doctor's names!! If the indomethacin doesn't work I am going to make sure that someone looks more closely at her occipital nerves. People have mentioned occipital nerve stimulation implants, some have mentioned occipital nerve surgeries/procedures. I read about Dr. Eric Eross at the May Clinic in Scottsdale, Arizone who has a new way of treating the HC with a special herb called Boswellia. The website for his medicine is: http://www.gliacin.com I am not giving up! We are going to figure this out and we are going to beat it!

      I tried looking up "EDS and Hemicrania Continua" but nothing came up. Then I read that everyone is saying that there are not any other coexisting conditions that go along with HC. I'm not sure about that. I will be looking into this for sure.

      Good luck to everyone. Sorry this was such a long post, but I needed to tell my daughter's full story. She has so much going on with her right now. There may be other people who also have coexisting conditions. We all need to figure this out.

      -Dedicated Mom

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  132. I guess I am the "classic case" of HC; I have the severe pain, drooping eyelid, runny nose....I kept getting diagnosed with either cluster headaches or migraines. Nothing worked medicinally for the pain so I gave up and figured this was my lot in life. I am fortunate at this point to have periods of remittance, but they only last about three weeks before I am thrust into a week or two of headache hell once again. I was FINALLY diagnosed with HC just a few days ago. I went to the doctor for a different thing, and luckily (I think) I was in a full-blown episode when I got there, and because of my autonomic responses to the intense pain, the symptoms were right out there for the doc to see! He prescribed indo for me, and within 12 hours I was feeling MUCH better! I still have a dull headache unilaterally, but in doing research on my own am trying to find something to combine with the indo that will take away the dull ache too. I'm just happy that it no onger feels like someone is taking a pickax to the side of my head!

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  133. Anonymous May 2014
    I have diagnosed HC. I never had a headache in my life. I had all the other symptoms for many, many years. I went to the neurologist when I felt there was something happening between my scalp and my scull - weird pain! My most annoying symptom is my ear pain. I should note that I have brain lesions also (not cancerous). I hope this helps people who cannot identify with symptoms already mentioned.

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  134. Has anyone gotten relief from their HC headaches via Botox injections?

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  135. My daughter is 14 years old and has had constant headache for 8 months. She had her first neurologist who said it was all anxiety, he started her on Zoloft and she started seeing a psychologist. She was still getting headaches every day so I wanted an MRI done and it took him 1 month to agree we should do an MRI. MRI normal. I was not on the same page with the neurologist. My daughter has anxiety but I do not think that is the sole cause of her headaches. I have a new neurologist and he keeps trying medicine. Amitrptyline, beta blockers and some other medication. nothing has helped. I even took her to the gynecologist thinking maybe it was hormones. She put her on ortho tricycline. It did not help headaches but did help her cycles to regulate. She has an appointment with the headache specialist in September, another month of headaches. I have heard good things about over the counter drug called Petadolex, which I am going to try this week. I am so frustrated. I feel so bad for her, she either just sleeps or can't sleep because her head hurts to bad. I miss my daughter and she is very depressed and doesn't want to live anymore.

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  136. Hi Shanny, thanks for posting. I am sorry to hear about your daughter. Given her age, have you tried to see if it's TMJ? Does she have any other symptoms at all? Wisdom teeth? I have also checked for TMJ various times, although it doesn't appear to be that (although part of me thinks it may be, and that something was overlooked - after all, my jaw MRI showed my jaw is slightly out of place). Are you UK or US based? If the former happy to recommend my kinesiologist for a few sessions if you would like to try. My headache hasn't gone, but our sessions certainly helped me. Hope things get better.

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    1. My daughter has had a thorough exam from the dentist, no TMJ and her jaw is set perfect. She also has been to the Opthlamologist and no problems with her eyes. I am in the US and I saw kinesiologist on your post, what is that? I am willing to try anything to get her some relief.
      Thanks for replying

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  137. Hi Shanny, sorry for delay in getting back to you. I had a monstrous attack the other day.. Still recovering from it now..

    You can read more about my experience with kinesiology here:

    http://www.permanentheadache.blogspot.it/2009/04/day-103-kinesiology.html

    It's very hard to explain what it is and how it works... I seem to have found relief with kinesiology - the pain has never gone away, but it has got better over time and I can only attribute that to my kinesiology sessions.

    I can't recommend anyone in the US - just make sure you find an experienced kinesiologist (I normally have 1-2 hour sessions - there are some kinesiologists who only see you for 15 minutes. It's nearly impossible to "test" you properly during that time).

    Let me know how you get on.

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  138. for 15 years I would get the ice pick headache every few months and take codeine for it ----just stopped paid for awhile then pain just would stop. Finally I went to Dr Ed Derman a pain dr in Houston -- it took him 10 minutes to diagnose and prescribed Indomethicin and PAIN GONE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!He called it Chronic Proxysmal hemiccrania. A genius and best Dr in WORLD !!!!!!!!!!!!!!!!!!!!!!!!

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