Hemicrania Continua

If you have Hemicrania Continua (HC) there is hope.

My name is Mark. This was my life then.

Some Success Stories

On 13 May 2013 17:24, “Kay” wrote:

Dear Mark,

I have suffered from an almost constant headache on the left side of the top of my skull, nose and eye for over 20 years. I have been diagnosed at different times with every type of headache known to man. I have taken a zillion different medications and preventatives, none of which worked completely (or at all).

Very recently my doctor gave me indomethacin to take before running, as running often triggered much worse pain than normal life, and I am training for a half-marathon. She said it probably wouldn’t help much, so I didn’t even touch it until three days ago when I got a strong headache and had run out of triptans. It worked so, so much better than the latest triptan I had been taking, with none of the horrid side effects (chest tightening, burning sensation in scalp, etc.). The triptans only ever took the edge off and left me shaky and exhausted.

Anyway, after my last three painless days, I woke up this morning with the familiar pain. I started to do a web search about indomethacin to see whether I could take it again today and I stumbled across your page first in my search. I read your story and everything fell into place.

I am sitting here in disbelief and tears. I truly believe I finally have the proper diagnosis after all this time. I tried your Valsalva maneuver and my clumsy attempts gave me minutes of relief at a time! Five whole minutes once! Now my indomethacin just kicked in and my pain is gone again completely.

I just want to thank you from the bottom of my heart for putting your story out there. For the first time in ages, I have hope that I can finally conquer or at least control these headaches. I cannot tell you how much time and energy I spend just pushing myself through pain and misery to make life good for my children and to live a normal life. I am sitting here in wonder that there is absolutely NO PAIN in my head right now and that I might actually get to experience this wonderful feeling on a regular basis.

Even if this isn’t the exact answer for me, I have made more progress in the last hour than I have in the last five years!

Kay

On 6 January 2013 00:13, “Lana” wrote:

OMG……is it possible you have given me a new lease on life?  I have read your post and I wanted to cry out….YES…..you understand…..unlike the 5 Doctor’s that I have seen. Internist, Sinus specialist, Neurologist (2), and Chiropractor……….!  I have had head and eye pain for the past 2 years….all medications that were prescribed would elevate my Blood Pressure, so pain medication was not an option. Some days the pain was so bad I would take the medication anyway…didn’t care if I lived or died just wanted some relief.

So two days ago I tried the Valsalva Maneuver and found relief. I was so stunned that it worked I just couldn’t get excited. But after several rounds of using your cure I have been able to control the pain for the last two days. I am so very, very grateful that you shared your story, I can’t thank you enough. Hugs and more hugs to you….from a 71 year old Grandma! 

On 25 October 2012 08:00, “Vic” wrote:

Hi Mark,

Just want to say thank you for sharing your experience.

I was desperate to find a cure for my headache as I know the symptoms are not that of a ordinary headache as describe by my doctor. The pain reliever that they gave didn’t help, the pain won’t go away. so I decided to research my condition and realized that I have HC. I was suffering 24X7 for two months and I could not imagine myself to be dependent on medication at 32. I tried the Valsalva manoeuvre after reading your post and guess what? The pain had stopped!

I am so blessed that it also worked for me. You are heaven sent.

Thank you so much and I hope that more people who are also suffering will read this post and help them overcome the pain.

Regards, Vic

Kay and Vic have added additional information in the comments section below.

For those that suffer from HC but are unable to take / tolerate Indomethacin, please refer to Eric’s post in the comments section for a potential alternative.

If you have questions please ask via the comments section available on each page so all can benefit from the information.

HC is still a little known and even less understood condition. The more we share the more we learn.

Someday, Someone, Somewhere, Somehow…. 4 and counting :-)

Mark

33 Comments

  1. Lynn
    Dec 10, 2013

    Hi mark,

    First I would like to thank you so much for writing your article. I am 41
    and have just been diagnosed with Hemicrania Continua. I read your
    article whist staying in the neurology ward in hospital……….and
    until I read your article I felt frustrated and helpless!!!! You have given me hope that
    I can beat this condition and get me life back!

    Please can I ask a few questions. Did you get a swollen red eye lid? If yes,
    can I ask if it went away? How long it lasted? Any medication you took to
    help it? I have just developed this side effect….only a few days ago,
    and it has really effected my confidence…on top of everything else, as
    it looks so nasty!

    Secondly, when you did the breathing out technique did you do it standing
    up, sitting or lying down? Did you come off the indrometacine before you
    did it? How many months down the line did you try it?
    I am going to try it, but want to ensure that I time it correctly and know the technique exactly, to give me the best chance of success!

    I am desperate to get my life back and be pain free and medication free.

    Any help would be much appreciated.

    Thank you so much again
    Lynn

    • mark
      Dec 10, 2013

      Hi Lynn,

      Sorry to hear of your recent HC diagnosis.

      I didn’t really get a swollen eye although I did have a runny eye. Not
      sure what to suggest but I think it will only be temporary.

      I did the breathing technique on the last night while laid down in bed,
      but this is not a requirement as it could be performed stood up, sat down
      or lying down. You should be suffering a headache at the time though as
      this is the only way to see if the technique is making any difference to
      the pain.

      I hadn’t stop taking Indomethacin at this time in fact I initially thought
      that this must have started working and then I’d fallen asleep. I had
      mistimed my dose though and this is why I was suffering a headache at the
      time. I stopped taking Indomethacin completely about 4 days after the
      night of my silent screams and have not had to take any since.

      From start to finish my experience with HC lasted at little over 4 months.

      Good luck.

      Mark

  2. Belinda Morgan
    Oct 15, 2013

    So glad I stumbled upon your website, My Name is Belinda and I live in Ireland. I felt like a hypochondriac going back and forth from GP to You name the Specialist and I saw them all, got various diagnosis along the way, Rheumatoid Arthritis, Osteoporosis, diverticula disease, Rhynitis, IBS, and finally after having an MRI Brain Scan and Ultrasound and staying off any pain meds for three months I saw a Neurologist who said I had HC! She put me on Amatryptilene and after taking 25mg a day after three days the pain I had for over three years in the right side of my head disappeared! And now 6mths later after a horrible plane journey it has come back, I am loath to take these tablets as they make me dopey, and along with the pounding constant headache is the sinus and jaw pain, sometimes streaming or bleeding nose and awful chest pain which was recently diagnosed as Reflux Disease, I suffered migraine as a child from about 5 to 10years of age which I wouldn’t wish on the devil himself and wonder if something triggers all these symptoms off! anyway I tried your maneuver and it sure was a relief, so Big thanks and am so happy to know I am not alone with this awful curse. Take care. Bel.

    • mark
      Oct 15, 2013

      Hi Belinda,

      Thank you for your email. I’m so pleased to hear how you have also found relief using the Valsalva manoeuvre.

      Thank you for sharing your story.

      Mark

  3. Eric
    May 25, 2013

    Hello there Mark.

    Thank you for your website ! I am not much of a “blogger” but I ran across your website and found your story and treatment to be fascinating!

    My name is Eric Eross and I am a Mayo Clinic trained neurologist and headache medicine specialist practicing in Scottsdale, AZ (The Scottsdale Headache Center at ANI). I have been intrigued by hemicrania continua (HC) since finishing my fellowship in 2001. At this point I have seen many patients sufferring from HC and have several hundred HC patients in my current practice. I particularly enjoy treating / helping patients with HC.

    For patients who suffer from HC, but do not respond to your “internal scream” technique, I would like to offer additional reason for hope. A few years ago I developed and clinically tested a novel, all-natural , patent-pending product called Gliacin. I called it Gliacin because of its ability to: (1) potentially activate the neuron support cells known as, “Glia” (2) safely mimic the benefits of its pharmaceutical counterpart Indocin. Just like with Indocin, Gliacin has been shown to: (1) act as a strong anti-inflammatory agent (2) block nitric oxide (NO) and (3) decrease intracranial pressure. All three are thought to play a key role in Indocin’s ability to shut down HC (and other related headache disorders). The true benefit of Gliacin is that it achieves its anti-inflammatory effects by blocking the LOX enzyme rather than the COX enzyme (as is the case with Indocin). It is the inhibition of COX that leads to very troubling side effects such as bleeding, gastric ulceration, renal impairment, increased risk of stroke / heart attack, etc. For this reason, Gliacin is much safer and can be used long term. Gliacin is also very well tolerated with the only minor side effect being diarrhea (seen in ~7% of subjects). My research / clinical experience shows that 8 out of 10 patients with HC, who respond to Indocin, will also respond to Gliacin. Nine out of 10 who responded to both, stated they preferred Gliacin.

    The details of my work were presented at the recent meeting of the American Headache Society in Washington, D.C. and the International Headache Society meeting in Berlin, Germany. The details of my work can be seen online. Likewise, a formal manuscript is currently in preparation.

    If any of your readers / bloggers are interested, they can obtain more information by calling us at 1-855-999-GLIACIN. We can also be checked out online at http://www.gliacin.com; website in progress.

    I would be happy to start a handful of your bloggers / followers on Gliacin at no charge. In exchange, maybe they could share their experience with Gliacin (whether it be good or bad).

    Best wishes to you Mark. Again, thanks for bringing HC to the public’s attention!

    Eric

    • mark
      May 25, 2013

      Hi Eric,

      Thank you.

      Mark

    • sproulx71
      Sep 28, 2013

      Hi Eric,
      I have been a cronic suffer for over four years. Have been to over twenty doctors will all kinds of different meds to try which only made things worse. they have settled on having me take two perks a day and going for a shot of demerall every other week when it gets that bad. I have lost four jobs due to attendance and am currently apply for disability because I do not know how to suppor my chidren when I can’t hold a job. I would love to be in your trial. Please let me know how I would find out if I qualifiy for your study. Today I went to a pain clinic is Boston and this is the first doctor that has ever mentioned this disorder and offered the anti inflamatory. But I already have stomach and heartburn problems. So he doesn’t want to go that route yet. He suggested anti tripiline. Which I hav e tried in the past and only made the migraines so much worse.
      Please help if you can.
      Thanks,
      Sherry

      • mark
        Sep 28, 2013

        Sherry,

        Make sure you try Indomethacin, it may not work but if you have HC it should!

        I also had heartburn/acid problems, my doctor prescribed Omeprazole which I still take to date.

        Mark

    • Belinda Morgan
      Oct 16, 2013

      Hi Eric, I would be very interested in your trials as I would prefer not to take the triptilene, I have been on a gluten free diet for over six months and this has helped with some of the stomach problems, finding something that will elevate all the others, the Jaw pain, ear ache, sinus pain, the pain in my neck which I used to think was my under active thyroid, oh and the hammer pounding/stabbing pain oh the right side of my head, I even had an MRI done because I was afraid I had a tumor. How do I contact you or you could contact me Belinda Morgan canadian viagra. Thanks. Belinda.

  4. kay33
    May 24, 2013

    Well, it has been 12 days since I found this website and my initial hopes (described in the note above that Mark quoted) are proving to be warranted! I have used the indomethacin a few times, but have found a lot of relief over very long periods by doing the Valsalva maneuver when my headaches start. I haven’t used a triptan in that time period, which is unbelievable. I truly have hope!

    I spoke to my neurologist over the phone and she is completely against my taking indomethacin as my primary medication for relief and does not believe my suspicion that my headaches are hemicrania continua or some weird cousin thereof. I did not mention hemicrania continua, but just told her I was responding to indomethacin better than anything else, ever, and asked whether I could get a refill on the prescription. She said something along the lines of “If you’ve read about hemicrania continua, I don’t think you have it.

    Her reasoning is that the headaches do respond to triptans and that, although my headaches are usually on my left side, I do have occasional right-sided headaches. My response was that the triptans give me only partial relief after several hours and with a lot of side effects, but that indomethacin gives me complete relief within 30 minutes and lasts the entire day.

    I understand from what I read that “true” hemicrania continua does not switch sides and does not respond in any way to triptans. Unfortunately, my headaches have not read these diagnostic criteria and insist on doing their own thing :-P

    I am going to meet with the neurologist next week again, and if I don’t get any concession about being “allowed” to take indomethacin, then I am going shopping for a new neurologist.

    Does anyone else switch sides occasionally? Does anyone else find relief from the Valsalva maneuver but not fit the diagnostic criteria perfectly? My headaches have NEVER fit any criteria perfectly. So frustrating.

    Kay

  5. cmaurer
    Mar 5, 2013

    I have had HC since last April. I have only been headache free 3 days after my first hospitalization last October. I have major complications though. I am in kidney failure and allergic to a ton of different meds. Because of my kidney function I have been unable to eve try the indomethacin so I am left to just try and ge through every day. I feel so helples and don’t believe I will ever be headache free again. I am seeing a headache specialist and she is trying but I am just now back to work after 16 days in the hospital with no improvement. I was reading aout the valsalva maneuver you mentioned and it says it carries with it the risk of auditory damage from over pressurization of the middle ear. I have had both ear drums replaced and the bones replaced in one ear and my eustachian tubes do not work. Do you have any other suggestions on how to get relief?

    Thank you so much for your story by the way. It means a lot to me that I am not crazy :)

    • mark
      Mar 5, 2013

      Hello,

      I’m so sorry you have not been able to find any relief for HC due to the numerous complications you have. I still remember vividly and have detailed my experience and all the information relating to the pain relief I found during my time with HC within these pages. The only relief and eventual cure for me was through applying one form or another of the Valsalva Maneuver. Indomethacin did work for me but only as a mask to the pain. Eventually the pain would always return.

      I’m not qualified to offer any advice outside that of my own experience. Valsalva worked for me and has brought relief to others. I wish you the very best of luck and hope that your condition soon improves.

      Sorry I could not offer any additional advice.

      Mark

  6. wesatdig
    Dec 12, 2012

    Hi Mark

    Your website is greatly appreciated. I believe I’ve experienced HC since a stroke in 1986. I was told that the headaches were migraines, but the description never matched my experience. HC matches it very well, but I’m sure that my doctor is skeptical. The many comments on your website give me confidence that I alsso have HC. Having had an ulcer certainly complicates things.

    Sincerely……….Al

    • mark
      Dec 13, 2012

      Hi Al,

      I’m happy that you have found my website helpful. I hope you soon receive the right diagnosis and treatment you’ve waited so long for.

      Good Luck,

      Mark

  7. vic
    Oct 29, 2012

    Hi Mark,

    Big thanks for sharing your experience. I had a continuous headache on the left side of my head, 24/7 for 2 months. I stopped going to the gym because the pain is getting worse when I exercise. I went to see a doctor and was told that the headache was just due to stress and work schedule (8pm-5am shift). Ironically, I moved to another department a month before and workload was just 20% compared to my previous assignment and I just came from holiday so definitely it’s not stress. I also work on the same shift for 7 years. He gave me pain reliever even though I told him that I was taking them for 1 month and still the pain won’t stop, but he insist that I should continue for another 2 weeks and will refer me to neurologist if it doesn’t work. I was frustrated. I felt he wasn’t taking me seriously, so I decided to research.

    I searched about headache on the left side of the head and I got results about Occipital Neuralgia, but it doesn’t describe about continuous pain, so I kept searching until I read about Hemicrania Continua. The symptoms of pain on the one side of the head and continuous pain that goes from mild to moderate. I was relieved that it’s not life threatening but was sad that the cause is not yet known, so there’s no cure but only pain reliever.

    I was desperate to find alternatives. I stopped taking pain relievers as the pain is bearable and I couldn’t see myself being dependent on pain relievers at 32.
    I read stories about people who have HC and come across this article. I was sitting on my chair and immediately tried the Valsalva manoeuvres or tried to pop my ears for several times and the pain had stopped! I couldn’t believe it that it’s almost instant. I’m headache free for two weeks now.

    I don’t know if it’s really the Valsalva manoeuvres that cured me or if it’s faith but I want to THANK YOU AGAIN, MARK for being the instrument. I hope that a lot of people will read your article and help them overcome HC.

    Regards,

    Vic

  8. brad n
    Oct 12, 2012

    Hi Aquarius,
    I havent heard of HC affecting neck, shoulders and back. Sounds like nerve issue to me, but I’m not a doctor. If it was HC, indomethacin should give relief of pain. Good luck with finding cure. Constant pain sucks.

    • Aquarius
      Oct 22, 2012

      I think you’re right….I do get relief from going to the Chiropractor or from painkillers. I read this article with someone who has HC and thought it could be it.

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  9. Aquarius
    Oct 11, 2012

    I have NOT been diagnosed with Hemicrania continua, as I just stumbled about an article about it on Fox News. I have the exact same symptoms. I’ve suffered this type of headache for over ten years now . I am not sure how they started but they are so bad. It happens on my left side of my head and I can just feel every second getting a little worse. It shoots into my jaw to the point of it being very tense. Then it spreads down to my neck, shoulders and even back and most of my left side is inflamed. My left eye gets watery and darkens, and I even get a stuffy nose from it. I would never wish this on anyone because it is hell if I ever knew it.

    I ‘ve have MRI’s and X-rays done and shows nothing wrong. Been to the doctors and they can’t figure out why I’m getting these… (painkillers never worked). But, then I started going to the Chiropractors for the past 4 years now and it has been a huge relief to me. (I will be discussing Hemicrania continua with my chiropractor AND my doctor and go from there). I’m wondering if its a nerve in my body or something that’s being triggered at certain times, and gradually gets worse over time that could be causing these. I usually get treated a few times when they get that bad and they go away for a time (usually many months) before they come back again.

    I just wanted to share a little about what my symptoms are and how I’m managing them. If a Doctor or painkillers can’t helping, maybe A chiropractor can.

  10. brad n
    Oct 8, 2012

    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

  11. mendra
    Sep 27, 2012

    Dear Mark,
    Thank you very much for creating such a useful website, my name is Mahendra Singh and currently doing my PhD from NIMHANS Bangalore. Despite being at the neuroscience institute I could not find a solution for my pain. I have been suffering from this pain since October 1996. It started after I had caught eye conjunctivitis and previous day (the day before pain started) had lot of yellowish discharge from my left eye and next day I felt a sensation of pain over my left temple. I though it as a temporary pain due to conjunctivitis. But it did not go away even after 3 months then I consulted a neurophysian who gave me some valporate to relax the blood vessel. I took this for 2 years without any success.
    So far I have consulted so many doctors and tried acupressure also but nothing seemed to working for me. I have undergone MRI, CAT-SCAN, NERVE CONDUCTION TEST, but these test showed nothing wrong. It’s a kind of throbbing pain, remains 24 hours, it feels like putting a lot of pressure on my left eye and ear. Sometime I feel like banging my head against a wall. There is also muscle twitching under the left corner of my lower lip. The pain is always there and never goes away. It has already ruined my precious 17 years.
    Yesterday I got to know about HC and luckily come across your website and found most of the symptoms in me relating to HC. Today I have started the indomethacin (25mgx3) along with omezoprezole. For my surprise my pain reduced by 20-30% itself with a single dose. For this many thousand times thanks to you. I also will try the valsalva maneuver. Could you please guide me how it is done properly. I would also like to know how many days normally it takes to be pain free with this medication. Please guide me and help me to overcome this pain as I do not want to lose more years to this.

    • mark
      Sep 27, 2012

      Hi Mendra,

      I’m so pleased to hear that you finally have some relief from your pain.

      The dose of indomethacin you are taking (3x25mg/day) does sound quite low and would not be enough to fully control the pain if this were me at the time of my headaches. I was taking 4 x 50mg/day because anything less meant that I would still experience pain.

      I believe the highest recommended dose for Indomethacin is 225mg/day or 3 x 75mg tablet.

      It may be helpful if you ask your doctor to start you on a higher dose and then reduce until you find a level that is sufficient to keep your pain at bay. This is also what my Neurological Consultant advised at the time.

      Re: Valsalva Manoeuvre (silent scream), I added additional detail in the comments section above, in
      response to Dawn’s questions. It is difficult to describe but hopefully you should be able to learn from the more straightforward language description.

      I wish you luck, please share any further success in controlling the pain.

      Mark

  12. Dawn
    Sep 18, 2012

    I’ve suffered from this undiagnosed pain for 12 years – having been diagnosed with TMJ & Migraine, by a south london neurology dept, with a prescription of Topiramate, before I googled & discovered HC. I forced my reluctant GP to prescribe Indomethacin, which worked brilliantly for 2 weeks then my whole body started buzzing like I was 10ft high so I had to come off it. Tried all of the other recommendations for HC with the same effect so back on Topiramate. Got a 2nd referal to Neurology who instantly named HC and is going to keep me on Topiramate with a something else which I have to wait until Friday for…
    But I was wondering if you could put a video up of your silent scream technique so that we know if we’re doing it correctly…it must be soooo good to have got rid of it – its so depressing.
    Dawn,42

    • mark
      Sep 19, 2012

      Hi Dawn,

      I’m sorry you were unable to take Indomethacin indefinitely, I was lucky and did not experience any adverse side effects.

      With regards to your request for me to video my silent scream, I’m not sure it would help but there again I have not done too well describing the exact movement in the past. Movement being an operative word.

      If I said the action is akin to a bowel movement when the bowel is trying to pass a water melon. Or as I would imagine giving birth?

      Borne of pure frustration, I just pushed and pushed, my head felt like it was going to explode which at the time would have been an option to consider. I then had to breath so I guess it was about a 30 second push.

      I recognised many seconds without pain, the pain returned, repeat the silent scream. etc.

      If you still need me to video the technique please let me know and I will figure something out.

      Mark

  13. mark
    Aug 4, 2012

    Lindaibim,

    Do you think you may have HC?

    Mark

    • aoks990
      Sep 5, 2012

      Hi Mark,

      I just found your website online, and read your story.

      I have been suffering for 10 yrs. with this condition, and was just successfully diagnosed and treated with Indomethacin in May of 2012. I was told to experiment with the drug to see how much I needed to take to remain pain free, and to continue to avoid all triggers. I was not told that I should then try to wean off of the medication as you did, but I would like to, as long as I did it properly, and didn’t make things worse for myself.

      I would also like to begin exercising again, but this is one of my triggers. Have you been able to do things that once triggered a headache? I am not sure if I should test my triggers while I am still taking the medication, or if I should try to wean off of the drug first.

      I would like to know your experiences with triggers, and any advice you might have for me.

      With kind regards,
      Kim

      • mark
        Sep 6, 2012

        Hi Kim,

        I didn’t have any triggers, from onset my headache was 24/7. The indomethacin masked the pain and I only experienced a HC headache if I
        mistimed my dose or ate at the wrong time.

        I had to take 4 x 50mg of Indo per day to remain pain free 95% of the time.

        The last time I mistimed my medication was the time I talk about on the Cure page of my blog. My Doctor had advised me the same as you that overtime I should try to stop taking Indo, but I didn’t wean myself off, I stopped taking it overnight following the Valsalva manoeuvres (silent screams) I performed in desperation while suffering a 9/10 headache.

        For me this worked. I have not had a HC headache since January 2011.

        I hope this helps.

        Mark

  14. lindaibm
    Aug 3, 2012

    I was diagnosed with bilateral Holmes-Aides Tonic Pupil apprx. 30 years ago. At age 52, I now experience significant autonomic dysfunction with my blood pressure (extreme highs and lows), and massive headaches when my blood pressure instantly surges to 250/160. Recently, my pressure has reached 300/180 (yes, “3″) that resulted in cutting off my breathing (unitl I turned very blue), failure of all senses (hearing, sight, couldn’t speak) and a grand mal seizure. I was unconscious for 3 days. I believe the autonomic dysfuntion of my blood pressure is due to the progression of the Holmes-Aides Tonic Pupil. I welcome contact of anyone with a similar experience.

  15. Ruby64
    Jul 24, 2012

    Hi Mark , hope you don’t mind me asking a few questions . I’ve finally today been told by a neurologist I’ve probably/ possibly got hemicrania continua . I’m female , middle aged? ( 47 ) and this fits in .  I’ve had strange head sensations / head pressure/ head buzzing since mid March this year.   I don’t class it as a headache as such , but it’s so debilitating I’ve been off work since March .  It’s so hard to ignore a thing that takes up about 80% of your head !!   I’ve had 2 clear head scans and was just literally at my wits end trying to end this feeling .

    I’m due to start on indomethacin soon and am putting all my faith in it .  Can I just ask did you suffer at all from head pressure ? Or and feeling of head “buzzing” (not from the pills , but from the HC )   I can’t find out whether hemicrania continua has this symptom . My neurologist thinks its a possibility and I’m willing to try anything to stop it .     

    Many thanks for your time    Jackie

    I found your web site really interesting , obviously I went online as soon as I got home to research .

    • mark
      Jul 24, 2012

      Hi Jackie,

      The only pressure that I could feel was behind my right eye. The rest of the pain was a stabbing sensation and pain as if I had severe toothache.

      I don’t doubt that what you experience is related to HC if indeed this is what you have. I was lucky, as I describe on the website, in that I could try indomethacin from the start and it was a very effective treatment. I have no doubt that had I not chanced upon Indomethacin and had to suffer from the pain on a continual basis all the symptoms that you describe would probably be present.

      I doubt any two cases are alike but I’m sure Indomethacin will bring you relief if you do have HC.

      Let me know if the Indo helps.

      Best of luck.

      Mark

  16. Franklin
    May 19, 2012

    I’m currently on an Idomethacin trial (225 mg / day) from my Neurologist to diagnose if what I have is HC. So far the Indomethacin has prevented it from “flaring up” but I still perpetually have a background feeling on my left side in the temple area. It isn’t painful but it is always there (like a pain scale of a 1 or 2, nothing to fuss about but still there). I am curious from people who have HC if this background level sensation is normal, or if the Indomethacin should give you a 100% clear head? (ie no difference whatsoever between the HC side and the normal side)

    Not complaining since it has given me relief (normally it would flare up to a 5 or 6 nearly every single day) just curious. This has been ongoing for me now for 2.5 years.

    Frank

    • mark
      May 19, 2012

      Frank,

      When I suffered from HC Indomethacin gave me complete relief from the pain.

      Mark

  17. janwatty
    Feb 16, 2012

    Hi >Thank you for this, I have been suffering since April I thought I had an ear infection had anti Bs nasal sprays etc . Eventually had a brain scan and spin scan and given toprimate was very ill with it but continued as I was desperate to get rid of this continuous head ache. I could no spell read and on one occasion lost my car as I couldn¹t remember where I had parked. I was taking 13 pain killers a day as my GP would not prescribe until I had a diagnosis. I was referred to Hope hospital Neurological unit Manchester but the wait was too much and I paid private to see Dr Silver a Neurological consultant I found on the internet and was also recommended, the best thing I ever did. I am now on indomethacin like you as well as the omeprazole. My life has changed completely from going to the gym and running regularly to doing nothing as physical exhaustion makes my headaches worse. I am going to try your advice I will read it through again as I too worry about the side effects of indomethacin and try on good days to take as little as possible but most days I¹m on 75mg X3 I really hope you continue to stay healthy and headache free, you are the first person I have known or contacted who suffers from this and it encourages me to know I am not alone but also there may be light at the end of the tunnel.
    Thank you so much for taking the time to produce the web page for others
    Kind regards
    Jan

    • mark
      Feb 16, 2012

      Hi Jan,

      Thanks for your kind comments and taking the time to share your story with others. There is unfortunately little information available and so the more we share the stronger we all are for it.

      Mark

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