Permanent Headache

I have had migraines my entire life, which were de...

2012-05-30T01:00:00.353+01:00

I have had migraines my entire life, which were debilitating and horrible, but in my opinion I would much rather have a migraine than this nerve pain. When I started going back to college about 6 years ago, I started having a different kind of headache. Through numerous episodes of this horrible, stabbing electrical pain (from the base of my skull on the right side, radiating up over the top of my skull and behind my eye, and down my neck and shoulder on that side as well) with the help of my doctor, I have landed on this diagnosis. I have noticed that this head and neck pain has been exacerbated over the years, when I need new contacts or glasses, when I use my right eye too much, or when I sleep wrong on the right side. It started up again with a vengeance about a month ago. I have been dealing with it for the past week straight with no relief. When it really hits, all I can do is groan and scream. It is the most painful thing I have ever felt. My blood pressure shoots up 30 points and I get extreme nausea, weakness and loss of appetite. My career has been put in jeopardy because of missing work. I feel for anyone dealing with this. The doc does not seem to give the disorder the credit it deserves, sometimes referring to it as a "tension headache." He has not done any additional diagnostic testing to find the cause. I have been referred to a chiropractor and am cautiously optimistic that this will help. Has anyone had an experience where they discovered the cause of their occipital issues and it made a difference? I am wondering if it would help to treat the problem, if we could determine the cause.

I would get an ECHO of your heart if you haven'...

2012-05-20T02:01:54.812+01:00

I would get an ECHO of your heart if you haven't. Many headaches can be caused from heart defects that you are unaware of, my brother died at 49 from an undiagnosed hypertrophic cardiomyopathy, normal EKG, normal EEG but massive horrible headaches, no one even thought to look at his heart :( He died suddenly and left a wife and 2 daughters. Please have them check your heart, I don't want anyone to go through what our family went through. I will pray for an answer, as I know these headaches were so debilitating to him as well. Please let me know how you're doing :) Kelly

Hello, I came across your blog some time ago and h...

2012-05-18T03:36:13.654+01:00

Hello, I came across your blog some time ago and have read a post here and there. Let me frame what I am about to say, because it could very easily be taken the wrong way, and I need you to know that I am simply offering an idea...

Firstly, I'm a bit of a hypochondriac, so I have the tendency to focus on symptoms. I have also come a long way with the way I deal with things, and have learnt a hell of a lot along the way. Secondly, I haven't read your blog in full, so I don't know even a glimpse of what you've been through. And thirdly, someone may have said this to you already and you either took it the wrong way, or simply dismissed it. Or it may never have been said before - like I said, I haven't read your blog in full, so I don't know.

But here goes...

I have had chronic heartburn everyday for 9 months straight, and then one day it stopped. I have had unbearably aching shoulders and neck every day for 2 months straight, and then one day it stopped. And I have had a headache everyday for 4 months straight, and then one day it stopped. I won't even go into the multitude of other symptoms I've had for months or years at a time.

Every single one of these things has had one thing in common: they start as a minor feeling - one which grabs my attention - and I begin to focus on it. I focus on it, and then focus on it some more. And then I Google it for answers, and I go and see a doctor or a naturopath or a homeopath or a kinesiologist, etc., etc., etc. All the while, this thing which started out as a minor 'feeling' grows bigger and more established. So I keep hunting for answers until one day, I realise that maybe there just isn't anything wrong except that this 'feeling' has ALL of my attention, and therefore ALL of my energy is being used to keep it alive.

In each and every single instance (and there have been lots!), I begin to get relief from the symptoms within days (or sometimes weeks, if it's been something really longstanding) of realising that maybe there just isn't anything wrong. So every time I think about it, or begin to worry, or do anything that might possibly fuel the fire, I just say to myself, 'there is nothing wrong with me', take a deep breath and distract myself with something else.

I don't like to use the phrase 'it's all in your head', because people have said it to me and it's not helpful. But I am simply offering a suggestion that perhaps if you let this thing go, then it will go. Try telling yourself that there's nothing wrong until you actually believe it, and maybe in time your body will catch up with your mind. It has worked for me on so many occasions with so many longstanding symptoms. And at the end of the day, you appear to have tried everything else - atleast this doesn't cost you anything.

Why not?

Wow crazy that this is a real problem. I have been...

2012-05-17T11:08:01.276+01:00

Wow crazy that this is a real problem. I have been having sever headaches since a stroke in early November 2012 when i blacked out behind the wheel and then involved in a serious car accident. It's like a tripple tragedy, stroke, car accident & now severe headaches. Two MRI's and waiting for CAT scan of head to see if anything shows up. Doctors & neurologists stand there scratching there chin thinking of next steps.I take AMITRIPTYLINE for headaches which for sure help take a load of but still stuck with that pressure feeling and awareness is affected. Still able to work which is great and sleep is fine as lying down takes away the symptoms. Still hoping will some how fix the problem. Best wishes to everybody as i know what you are all going through.

I had a headache for 300 days straight. Supplement...

2012-05-17T04:36:34.409+01:00

I had a headache for 300 days straight. Supplementing with B12 actually made it worse. Food sensitivity testing revealed a long list of culprits, the worst for me being gluten. After removing all the sensitive foods, the headaches reduced gradually and were gone in about 3 months. Then I re-introduced foods one at a time to find out the worst culprits. Now, without the offending foods, B12 can be tolerated well .Neck massage and Ginkgo Biloba have helped increase blood flow in and out of the brain, giving me some relief.

My headache started April 10, 2011 and to this day...

2012-05-17T02:11:33.051+01:00

My headache started April 10, 2011 and to this day May 16, 2012 there is not a day I don't have some type of headache. It goes to tolerable to intolerable that I can't function. And for bonus my headaches come with flu like symptoms, nausea, dizziness and body aches. I have FMLA for work, however that is not going to last long. Sometimes I push myself and go into work in fear of losing my job. I have been to severe doctors and tried several different medication which nothing has worked. I had outpatient infusions and inpatient infusions and I have had nerve blocks. Nothing has worked. Doctors don't come out and say it but they give up on me. I am hopeing this will go away as misteriously as it came. Is this possibly? I just want to live a normal life. I know there are people have it worse, but I love my job and I don't want to give up my job.

in the u.s. we call it Central Nervous System vasc...

2012-05-15T18:30:05.612+01:00

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

Just found your site as well. I lost count of my o...

2012-05-14T19:44:25.650+01:00

Just found your site as well. I lost count of my own headache around day 1,716. I've tried everything from toxin cleanses to chinese medicine (which about the only thing i've seen mild results from) to naturopaths to MDs and neurologists to no avail. Thank you for keeping this blog. You're not alone.

If you're going to Los Angeles, you could do a...

2012-05-07T02:36:16.199+01:00

If you're going to Los Angeles, you could do a lot worse than to go to dr. Wouter schievink in cedars sinai hospital in LA.

I've just had the LTT Melisa test for Lyme Borreliosis. Results before Friday 11th May. I'm actually hoping for a positive test so I can be treated and not dismissed with all this psychosomatic nonsense the doctors pull when they can't work out shit.

Hi, I too suffer from constant headache. Just stu...

2012-05-03T09:27:03.585+01:00

Hi, I too suffer from constant headache. Just stumbled upon your site after searching for "wormwood" and "headache" via google. Going on two years now. Blogging has never been an interest of mine and I don't know how to email, if it's even an option. Hence, this comment. If you like, we can communicate further about this terrible "thing" we have. Believe me, I know. itsallenergy@gmail.com

Hey guys, I've been experiencing constant, ver...

2012-04-30T22:39:38.924+01:00

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

I was diagnosed in 2006 at 16 years old. My headac...

2012-04-30T15:23:26.199+01:00

I was diagnosed in 2006 at 16 years old. My headache does worsen when I lay down, and I have found that elevating my mattress helps me sleep somewhat.

Wow. I am amazed at the number of people who shar...

2012-04-28T03:54:31.738+01:00

Wow. I am amazed at the number of people who share the same condition as me. I am so sorry you guys! I was diagnosed with IIH in 2010 after a routine eye exam showed swollen optic nerves. After two spinal taps with opening pressures of 180 then 270 in January 2012, I am now on Diamox 250/500 and have had some relief. My headaches went from 7/10 daily to 3/10 currently. The low sodium diet also helps as does magnesium and b2 - this was recommended by my neurologist. Keep posting everyone as the info is very helpful!

I also have suffered a Sacrotuberous/ SI joint inj...

2012-04-25T02:00:41.822+01:00

I also have suffered a Sacrotuberous/ SI joint injury and also suffered TMJ znd cervical headaches. Tried just about everything, but prolotherapy to both sacrotiberous ligament and SI joint was the most effective. Hope this helps.

I know exactly what you mean - I have virtually no...

2012-04-17T06:30:47.849+01:00

I know exactly what you mean - I have virtually no sympathy for those who get the occasional headache. I don't like being like that, especially when people don't realize who they're talking to. It's hard to have sympathy when you've had this much pain for so long.

I'm kind of going through the same thing as you described - I wish I never would have told some people about my headaches but more so about my having epilepsy. People tend to treat you differently when they expect you to act all weird. At least having headaches is one thing - people who don't really know me, yet know I have epilepsy tend to treat me as if I were mentally retarded. Yes, I suppose I act a little bit strange to others, and I'm a bit goofy at times but I'm also smarter than a lot of people, and no one really deserves to be treated this way.

I am and have been suffering (at times an understa...

2012-04-16T23:31:39.765+01:00

I am and have been suffering (at times an understatement) from occipital neuralgia for 4 years, beginning immediately after undergoing brain surgery for the removal of a very large tumor. I have tried, as many have, various treatments, to no avail. The narcotics relieved the pain but made me a drooling zombie. I switched to cannabis (using the Sativa strain instead of the Indica) with satisfactory to good results, depending on the severity of the pain. The greatest attributes of the cannabis are, NO ADDICTION, maintaining cognizant thought, the stimulation of hunger (something I lost due to the tumor), and mood elevation. I reside in California where use is legal. Am going in in June to have a stimulator implanted. The test implant was quite successful. Oh, the anticipation of freedom (to whatever extent)from pain, and all other aids in the mitigation of the pain. I pray I'm saying goodbye to this hell.
MH

Hi Hopeful. I am so sorry to hear about your dist...

2012-04-16T11:49:59.024+01:00

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

Gosh! I think I have the same problem - (the HC). ...

2012-04-16T07:37:36.168+01:00

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.....

Hello, I think that what you have written here is...

2012-04-15T07:51:12.650+01:00

Hello,
I think that what you have written here is truly great, well written as well. It also helps just a little bit to talk about the actual problem yourself. I also feel for you i have had a constant headache for almost 4 years now, although it gets better or worse at different times, its almost getting to the stage were its becoming unbearable, no matter how much you think it will get better, or you will get used to it, you don't. The fact that its always there every minute of your life, just makes you shiver thinking about it. It just feels like its never going to leave, like theres no hope left.

I have also seen countless of doctors and specialists none of which has known the exact answer. You do have a point about trying to not think about it, i also try distracting myself, via the computer, puzzles, different things to try and make time pass faster and attempt to forget about it, but it doesn't work like that, Unlike you reading makes my headache more noticeable because its not a passion, and personally find it fairly boring but thats just difference of character. The problem with the headache is just that its something thats always there and feels like its never going to leave, no matter what you do.

It causes many problems, from school/ work related to just struggling to leave the house. Family members and friends don't believe you as well for no reason... well the worst thing is when people say they believe you, but act like they don't. And no I would never end up killing myself, to selfish for that, but i could definitely see why someone would want to, living with the constant pain and uncertainty of what will happen next, never being able to get rid of something that causes you so much pain and being afraid of whats going to happen next? will a specific medicine work? what if it never goes, how do you live with it? will it start to even get more painful more regularly?
Thanks again for creating this blog and i hope that other like minded individuals find the answer, what ever it may be.

Thanks for the blog. Unfortunately, I am one of th...

2012-04-12T05:15:13.915+01:00

Thanks for the blog. Unfortunately, I am one of the few who knows exactly what you're going through, and I know exactly what you mean when you say your head hurts 24/7. I've had a 24/7 headache for roughly 22 years, at least. I've spent the majority of my life "living" like this, so it's pretty much all I know. I'm 32 years old, but according to my mom I was having headaches as early as 4. I pray you're not like me - that you will find something that works, or that yours will just wane on their own. Everyone is different, I suppose.

I think you perfectly summarized what it's like to live this way, I have difficulty putting it into words myself. It helps me to know though, that I'm not alone. In a world where most people consider having a headache for a few hours or a few days, a real curse, I just have to laugh at how lucky they are and never know it, and it makes me feel like a real outcast at times. Living with this pain for so many years just makes everything so much more difficult, and most people just don't seem to get that.

"I have learned to try and not ponder too much on its presence, to try and get on with daily life as much as possible and not let it interfere with my life, but the truth is that at times when I go to bed, I sometimes wonder ‘What if I just don’t wake up tomorrow?’ The truth of the matter is that, as much as I can ignore it, I realise that it is not normal to have had a headache for three years and sometimes I worry that the wretched thing may play its final joke on me.I have learned to try and not ponder too much on its presence, to try and get on with daily life as much as possible and not let it interfere with my life, but the truth is that at times when I go to bed, I sometimes wonder ‘What if I just don’t wake up tomorrow?’ The truth of the matter is that, as much as I can ignore it, I realise that it is not normal to have had a headache for three years and sometimes I worry that the wretched thing may play its final joke on me." I know exactly what you mean. Exactly. In some ways, it gets easier in time, others, not so much. I wish I could live a "normal" life like everyone else, but I try and do my best.

I haven't read enough of your blog yet to know if you have other types of headaches or not but I thought I'd throw this out there for your readers in general-

I have a permanent headache which has lasted roughly 22 years, what I believe to be hemicrania continua. On top of it, I have other headaches at times, such as migraines. For many years, I had what felt like a daily migraine. I started doing a rehabilitative fitness program called T-tapp (www.t-tapp.com) almost 2 years ago. The severity of the pain, and frequency of the pain has drastically decreased. I still have the hemicrania continua, but the overall pain is no where near as bad as it was even a few years ago. I'm hoping with time, and as I get stronger and in better shape, it will help my headaches even further. Some T-tappers have seen complete headache relief (granted, they probably don't have hemicrania continua).

To my fellow sufferers, hang in there - I'll be watching this blog now that I've found it. Hopefully someone else has found something which helps even a little. If anything else, it really is just a relief to know that I'm not completely alone in this.

It is so nice to read all these comments. I to ha...

2012-04-05T18:22:26.085+01:00

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.

I think I have HC too. The only symptom that is di...

2012-04-02T04:52:51.798+01:00

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!

First, thanks for the blog. I just stumbled acros...

2012-03-25T21:59:35.218+01:00

First, thanks for the blog. I just stumbled across it. There is always strength in numbers, so hopefully we can all help each other.

As I read your post, I think I could have substituted my name for yours. I have also just hit my three year anniversary of these little bastards. Mine was caused by a carotid artery dissection. Although it's healed, it looks like I'm left with these headaches, possibly forever.

You are right, pain is physically and mentally exhausting. It affects your entire life. I live with some version of a headache every single day. As most of us do, I always risk slipping into full blown migraines, especially if I am not taking care of myself the way I need to. But as we also know, no matter how well I take care of myself, sometimes a butterfly opens its wings in China, and BOOM-- a migraine kicks in.

Having said all that, though, I can never quite bring myself to say I wish it never happened. I just can't quite say it. WHY, you may ask? I guess I would have to say that these headaches have led me to a whole new world that quite simply I never would have explored. I have always believed in serendipity. That belief has been sorely tested of course, but I keep telling myself that if i'm going to believe in serendipity, I have to take the good with the bad.

So... here's the New World. My doctors told me to accept the fact that I will be on daily medicine for the rest of my life. I found the medicine very tiring, lots of side effects, etc. So I made some major life changes. With some level of desperation, I turned to Chinese medicine for relief. Long story short, I switched my diet to a whole foods, plant-based diet. I regularly get acupuncture. I do biofeedback training, which is based on meditation. Other stuff as well.

And so here is the serendipitous part. After 25 years, I am leaving my career as a consulting partner at a worldwide consulting firm. I will be starting school this fall to get my Masters in Oriental Medicine. I'll be trained as an acupuncturist, but will probably focus more on dietary as medicine.

As part of this journey, I have built a whole new set of friendships and relationships in areas i never dreamed about. One of my best friends is my Asian nutritionist. She was a waitress at my favorite sushi restaurant and by chance I found out she was studying nutrition as medicine and was just starting to take clients. Trust me, the chances of me and her ever intersecting from our to VERY disparate roles are slim and none. My acupuncturist has given me great ideas on how to proceed with this new career. In turn, I try to help her with my own expertise from the world of Consulting, and with my business and community relationships I've built over 25 years. I love food... I mean LOVE it...so I have started exploring new restaurants and very specifically tried to build relationships with owners of such establishments. I have a whole new way of cooking.
My old college track coach asked me to help him coach a group of middle distance runners. It's so cool. I like to write, so now I have more time to work on my short stories.

All these fabulous things never would have happened. Never in a million years. And I owe it all to my headaches.

Don't get me wrong, it's obviously a tough path, and the headaches can really get me down. But I truly believe that they happened for a reason, and my life is so much richer than I ever dreamed possible.

So that's it. This is one long message-and maybe more than you bargained for- but it was very cathartic for me, and I hope it helps others as well.
Thanks for your help!!!!

I just saw this on the Mayo Clinic website through...

2012-03-21T23:22:32.830Z

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

i have had morning headaches for about 2 years. th...

2012-03-17T22:25:09.274Z

i have had morning headaches for about 2 years. they would usually be 3 out of 10, but sometimes more. cannot find an answer. good luck to you.

i had success with my son's headaches using the RPAH (Australia) diet - http://www.sswahs.nsw.gov.au/rpa/allergy/ and http://fedup.com.au/factsheets/symptom-factsheets/headaches-and-migraines (a superb support site - particularly read story 672). it is much stricter than just nightshades (eg you mention eating spinach which is not allowed). very scientific approach - leave out all suspect chemicals until symptoms disappear then introduce them back one at a time.

where are you?