Friday, 13 January 2012

Day 1121

The three year headache anniversary passed unnoticed – or should I say ignored. One year, two years, three years.. it nearly seems to make no difference anymore. It’s been dragging on for so long that my hope that it will cease is waning.

I wish those who didn’t suffer from this wretched thing could understand how awful it is. Having a constant headache is so tiring, it makes the world so much heavier, every moment drags on for so much more, even when it's a fun moment, it's always somehow ruined because nothing is ever perfect, there's always that horrible headache reminding me that something is wrong.

One of my greatest passions is reading and yesterday, as I was reading a book, I had to stop for a while as the headache – for whatever inexplicable reason – was quite strong at that moment and it made it hard for me to concentrate. So the headache is always there, reminding me of its presence (don’t worry, I won’t forget you, dear) at every moment. Even when I have a few moments to myself, to sit back and relax, the headache topic inevitably comes up. I question it but soon get tired as I have no answers, and try to brush it aside.

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.


  1. If this would be any consolation for you, I suffer from daily headache myself (much less intese than your though) and I totally understand, how it ruins all good moments in life, they're just never perfect! But don't loose your hope, because as long you have it it's still worth to live. Greeting from Poland!

  2. Don't worry even I am sailing in the same boat.even I am getting headache constantly past 4-6months....tried few medications ,got my eyes tested but everything in vain...hope we all overcome from this problem soon...

  3. i just stumbled upon your blog and i'm so glad i did. every word you've written i could have written myself. living with this is so isolating... it's a bit of a comfort to know i'm not alone. i'm on year 12 of my headache.

  4. I have suffered from a continuous headache 24/7 since April 2004.

    Tinnitus since December 2004.

    MRI of spine and neck with IV Gad contrast on Tuesday. Possible MRA+MRV of head and neck. If nothing revealed may just commit suicide.

    I suggest you look into MEG Magnetoencephalography scans of your neuromagnetic brain activity and a possible diagnosis of Thalamocortical Dysrhythmia.

    There are articles on PubMed. Look up Edward G Jones chronic pain.

    My email is

  5. Peter, I am sorry to hear you've also been suffering from a continuous headache for years.

    It's exhausting for all of us who suffer from the same mysterious headache but we must all hang in there and help each other out - one of us may find something which could help others.

    Thanks for sharing the PubMed info - any specific articles you recommend by Jones?

    Be strong!

  6. I don't know if this makes you feel any better or not, but I just had my 3-year anniversary of my daily headache last month too. It makes me feel less "crazy" reading your post as I feel like I am not alone. I do have a diagnosis (hemicrania continua) although that really does me no good whatsoever because the one medicine that effectively works on that caused me to be hospitalized twice and almost lose half my intestines. If you get curious or bored enough check out my blog at

  7. Oh I Just want to Say So Sorry you are still counting. I am too but actually don't want to do the math~ somehow we are kindreds in this department. Neurologist today just said hemicrania continua, as if I didn't know. So I decided to check in with you after a long way away and was so sad to see you were still counting. But, Glad you are Still Alive. All the best to you. Let me know if there is anything I can do. SP

  8. Hi,

    After reading your blogs, it has made me realize that I'm not alone. I woke up in November 2005 with a headache that has not left for 1 second. I've seen every Doctor under the sun for all types of treatments (including Sinus surgery) but nothing has helped. I had been taking roaccutane for one week before the headache started so I went off it immediately, but the headache never left. I had also been taking Minomycin for 2 years before I started the Roaccutane. Both of these drugs are for Acne and both are known for possibly causing Intracranial Hypertension, as there quite strong drugs. I had a Lumbar puncture in 2006 but there were no abnormalities. I was extremely stressed out about my acne at the time of the headache onset and couldn't even look at myself in the mirror without feeling down on myself. My Mother suspects that it could be a tension headache, but it feels like a pressure in the forehead that does not change with my mood. If you have any recommendations....please let me know.

    I know second opinions are always worth it and some people don't do their jobs properly so do you think it's worth getting another Lumbar puncture?

    Another Question for anyone viewing this with a similar problem is... at the time your headache started were you extremely stressed about something?

  9. Hi all,

    So sorry to hear about all your headaches. I had a headache for a year when I was about 24. Very stressed out during that time. I was able to see an acupuncturist and I was healed in 3 sessions. It probably helped that I had moved to a residential community and was meditating every day. Her name is Kiko Matsumoto in Boston area. She is world renowned and worth a trip if you live out of state.

    Happy Healing

  10. I am coming up to the five year anniversary of mine and still counting. The only thing that keeps me sane is that it is much better than it was in the first two years. With hundreds of tests and many many specialists and still no answers, the only thing that has helped is time and somehow my body is managing to heal itself very very slowly from whatever storm of events collided in May 2007. I dont remember what its like any more to feel healthy, energetic, alert, or refreshed after a long sleep, but I haven't given up hope of feeling that way again.
    Hayden, your situation reminds me of some things in my medical history. I was on Roaccutane many years ago for acne - it is a terrible drug, so strong and I was given it without them having properly investigated underlying causes. Have you seen an endocrinologist? If not I recommend it for you as acne and headache can be linked to endo issues and best to get them to check you out (there are too many to list or try to understand, their series of blood tests will quickly narrow down if you have any endo issues).

  11. 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 - and (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?

  12. 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 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!!!!

  13. 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 ( 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.

  14. 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.

  15. As I write this, my girlfriend is asleep after having had her first headache free day in 17 years. Last week, I ran across a story about hemicrania continua, and how it can be treated with a simple anti-inflammatory drug called indomethacin. She's seen all kinds of doctors and neurologists over the years, and even psychiatrists. Never once did someone mention HC. Her doctor decided it was worth a try after being asked about it. Within an hour, she had zero pain. She's been in a state of happy shock all day. I ran across this blog while reading up on the disorder, and thought I'd add my two cents. The medical community seems largely uneducated about these headaches, and it's an embarrassment that her first relief in nearly two decades only happened because I happened to run across a story online that mentioned her symptoms. Keep looking.