Popular ways to misdiagnose Hemicrania Continua
You’ve always wanted to misdiagnose hemicrania continua, but you haven’t been sure how to do it? You’re in luck! A recent study is bringing to our attention some of the most popular ways to mistreat and misdiagnose this disease, so you can choose your favourite next time a patient comes into your waiting room.
All right – joking aside. I know that doctors do not want to misdiagnose, but for some reason with this one it’s happening. And there’s good reason. When a patient comes into a doctor’s office with a one-sided headache, it’s natural to think it’s migraine.
So what is it?
But hemicrania (one-sided) continua (you know – doesn’t stop) is different. You’ve guessed one reason – it tends to be more steady than migraine. It doesn’t change sides, as migraine pain often does. Also, it doesn’t come and go like a headache from migraine usually would. It stays and doesn’t go away, though it can go from moderate to severe.
Like cluster or migraine, it can be accompanied by congestion, and watery eyes. A shrinking pupil or drooping eyelid is also a common symptom when the pain increases, making it look like cluster.
But, once again, unlike cluster or migraine (usually) the pain is continuous.
And with hemicrania continua, there’s a silver bullet that almost always works: indomethacin (indometacin). Indomethacin is a non-steroidal anti-inflammatory drug (NSAID), sold under brand names such as Indocin, Indorchron E-R, and Indocin S-R.
So with such a good treatment readily available, you may imagine it’s important to get the diagnosis right.
Popular Misdiagnosis
The study in Italy on hemicrania continua, published in February, found that all the patients with hemicrania continua had been given an incorrect diagnosis. Here were the most popular ones:
The reality sets in when we find out what kinds of treatment these patients received. Remember, treatment with indomethacin would have almost certainly been effective.
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!
Hemicrania continua is usually listed as a rare condition. But looking at studies like this, it makes you wonder if more people should be trying indomethacin early on in their treatment. It has been argued before that, though not always obvious, hemicrania continua isn’t that rare after all.
If you have a headache that tends to be on one side, this is something you should be talking to your doctor about. An indomethacin trial will rule out the possibility of hemicrania continua, or it might just be the answer.
3 May 2009 @ 3:59 am
Indomethacin seems a great “cure” for hemicrania continua but it’s actually a pretty nasty drug that eats away at the stomach lining and a great percentage of people, like myself, with hemicrania continua cannot tolerate it.
6 May 2009 @ 1:28 pm
Yes, I should have clarified that. Indomethacin in this case is a diagnostic tool – but not necessarily the only or best treatment for hemicrania continua.
4 December 2009 @ 2:53 pm
My 10 year old son has been taking Indomethacin for a while. His headaches continue even with this. When the medicine is taken away, he tends to have more frequent and sharper flare ups. Could his dosage be too low not to completely rid him of the pain? He has been dealing with a constant headache now for 8 months, and the only time relief he has had was when admitted to hospital for infusions of another type of drug, but that dosage was double what is normally used, and the ‘pain free’ lasts only about 8 hours once the infusions stop. Then when the pain returns, it typically comes back with a vengence. Does anyone have any information?
2 April 2010 @ 6:54 pm
I have been successfully treated for HC with Indomethicin 75mg 2X/day for the past few years. Unfortunately, I developed stomach ulcers and am now diagnosed with Crohn’s Disease and can no longer take the Indomethicin. I’m not sure what will happen next. I have been almost headache free on the meds, but now, no more. Anyone else out there have a similar situation?
As for Stu, how much Indomethicin has your son been taking?
18 October 2010 @ 10:14 am
for my daughter they finally got creative and they gave her a dose of reglan and then the indomethicin. it finally cut the pain. now she takes topomax which seems to help a lot and when the pain returns we give her a dose of reglan and then a dose of indomethicin and it really helps
17 February 2011 @ 10:30 pm
Hi Melissa,
How is your daughter doing with the Topamax? Our 15 year old was just diagnosed with HC & has daily unilateral headaches for greater than 2 years without relief. We are on Indocin now (3x day) & if she does not obtain relief by Sunday we are switching to Topamax. Just wondering how your daughter is doing, if she is pain free at all and if the diagnosis is the same.
Thanks for your response.
18 June 2011 @ 11:47 am
Hi, I have HC, so 3 Drs. Say. Was on 300 mg of indocin, 250mg of topamax for two hrs. No relief. Dr. 3 took me off those 2 drugs and put me on melatonin 10 mg tr, daily and in one week the HC was goon for two years. But now they are back… Well I had 14 months of pain free, clear headed life! Good luck with the topamax, nasty stuff. It might work for you!
7 April 2010 @ 1:54 pm
Marsha,
Fellow HC sufferer here – did your HAs come back pretty severe after discontinued use?
11 April 2010 @ 11:08 am
I just stopped the Indocin about 2 weeks ago. So far, my eye is tearing all the time and I wake up each day with a headache that is tolerable and only lasts for about 1-2 hours. I haven’t had a migrane (thank G-d) yet.
13 April 2010 @ 8:39 pm
I was hospitalized two weeks ago, and I came out on the Indocin! I have been headache free for a week and I am so happy, but I am so tired. I have been researching this drug and I am so scared at what it could possibly be doing to my stomach or if I stop taking it. Is this the only way?
25 January 2011 @ 3:06 pm
I have a friend whose daughter has recently been diagnosed with the condition. The drug they use to clear it up is hard on your guts but if you take metamucsile with phsyllium it should help your stomach with the effects the drug has on the stomach lining.
28 January 2011 @ 1:27 pm
Anne,
Metamusil is only fiber. It will not protect your stomach against ulcers. I am on a few different medications now since my first two ulcers from Indocin. I hope I am now able to tolerate the Indocin better than last time. It’s a lower dose, but the only thing that keeps the HC away.
18 April 2010 @ 10:12 am
Dx with HC in 2007. I wasn’t able to tolerate the indocin, but I was on about the maximum dose, and already had other health issues. Some people never get the side effects, and some do. I loved the indocin because the pain was sooooo much better, but it didn’t love me back.
You can have this compounded in a supository also, I think you have to go to a compounding pharmacy tho, and those aren’t in every town.
Currenty have an occipital stimulator installed which works 90% of the time.
For me, indocin was the only medication that actually reduced the pain effectively, however steroids did help such as dexamethasone and solumedrol. Some who can’t take indocin end up on narcotic based medications, but they didn’t really work for me. The stimulator has been a god send.
19 April 2010 @ 9:19 am
Thanks for the suggestion! The doctors don’t think this is HC even though the Indocin is working, because Indocin can be effective for other conditions. This is just a confusing and sometimes disheartening process as attempt to make the best decisions for your particular situation. It can sometimes be overwhelming, especially when you have to weigh the benefits and side effects. Still pretty headache free…taking back control of my life! Live, Laugh, Love every minute you can!
24 April 2010 @ 3:19 pm
Jamila,
Make sure you are taking something for your stomach like Protonix. It helps to protect your stomach from the Indocin. Your doctor should have suggested it. If not, suggest it to him/her.
20 September 2010 @ 2:03 pm
I take indomethacin (50mg 3x daily). My stomach used to bleed but now I take panteprazole and it really works. I also get injections of sensorcaine from my neurologist that can stop the pain completely for a few weeks.
20 September 2010 @ 5:50 pm
My headache/pain specialist seems to think I have Hemicrania Continua. I was misdiagnosed with having a cluster headache and migraine for over 2 years by physicians and neurologists. Everything I tried to treat them didn’t work. The first thing that came to mind when I saw a headache specialist a few months ago was Hemicrania Continua. I have all the symptoms – they fit perfectly! I tried Indomethacin for several months, gradually increasing the dosage every 2 weeks to the maximum and there was absolutely no relief.
Are there any other drugs out there that treat Hemicrania Continua that people have had success with? (for those that didn’t respond to Idomethacin). I’ve also been on Lyrica and Topomax with no results. Maybe I’ve been misdiagnosed again? The headache specialist seems stubborn on his diagnosis… I guess I’m just a rare case that doesn’t respond well to pain medication.
7 October 2012 @ 6:35 pm
I have very similar results with the meds you have tried. A combination of Lortab every 8 hours and Cymbalta helps me be mostly painfree. I also take Amitriptylyne and Requip to help me sleep. I have traded pain for fuzzy thinking.
21 September 2010 @ 2:10 pm
I have been taking Topamax for several months now and while it does not work as well as the Indocin it does give me some relief. I still experience some headaches. Sometimes I have dull headache that can last for days with continuous eye tearing, but it is more tollerable than it was before I had any treatment at all. I just have to accept that I can no longer take Indocin and stick with the Topamax. I do experience slight side effects; numbness and tingling in my fingers and toes, but I dring a banana smoothy every morning and that helps.
29 December 2010 @ 3:41 am
I came to this website looking for help with my HC pain. I’ve been on indomethacin for 2 years. It was a magic bullet until recently. If Indomethacin hasn’t worked for you, you have probably been missed diagnosed. I spent two years on treatment for various things I didn’t have. Make sure you’re seeing someone who specializes in this area. Best Wishes and Good Luck
29 December 2010 @ 10:50 am
“It was a magic bullet until recently”
Wendy, what happened? Did it stop working? Too much breakthrough pain? GI issues?
3 January 2011 @ 6:46 pm
The Indomethacin only works about 50% of the time. I’m also having breakthrough pain that is bad!
21 September 2010 @ 11:13 pm
I use a combination of benedryl/phenergan to help with the pain, it is compounded into a skin cream. I have some very strong pain medications for rescue purposes, but if I take them more than a couple of days in a row The Headache is not happy so I try not to take these if at all possible.
One person I know of has had luck with botox injections. Hopefully the occipital stimulators will get FDA approval for treatment, so insurances will pay for the device!
23 September 2010 @ 1:50 pm
I take verapamil (240- 360 mg). It seems to keep HC pain away once it is under control. I use indomethicin when the pain is bad, but I stay on verapamil and topiramte all the time. When the pain is under control I stop taking the indomethicin.
The other thing that works for me is melatonin. 7mg at bedtime can really stop the pain. It takes time to build up to this dose because it can cause dizziness. I got this idea from the NINH website.
I have had trigeminal neuralgia for 17 years and HC for 8. The HC is bilateral and the strigeminal neuralgia is in all 6 branches. I have tried everything imaginable and for the HC these are the only things that have worked apart from injections.
13 October 2010 @ 1:52 pm
I feel I have given the Topamax a good shot but I have been having headaches daily for several months again now that I am off of the Indocin. I return to my neurologist tomorrow and will see what he says. I truly have faith in this man as he is very caring. My eye has been tearing all the time and my vision seems to be worse. When the headache gets really bad I take Relpax and that seems to help. It’s just getting so hard to try to function every day with a headache. I wake up with it and go to bed with it. Just when I think I can get used to it, I realize I really can’t.
17 October 2010 @ 10:45 pm
My heart goes out to all of you who are journeying through medical system getting diagnosed (and misdiagnosed), trying meds that don’t work (or do but you can’t take them because of their side effects), and feeling hopelessly crippled by the pain of Hemicrania Continua. I was there.
I was given an Indomethacin trial during my second month of continuous headaches (circa ’07). Worked like a charm, however the neurologist took me off it saying that it would be too rough on my system to continue. By the time I finally convinced a neurologist to put me back on the Indomethacin (after doing Topomax, botox, acupuncture, etc. to no avail), my headaches were so bad that the Indomethacin didn’t completely clear them up. Although it did help decrease the spikes.
My breakthrough was getting an Occipital Nerve Block (injection of numbing medicine and a tiny bit of steroids) on the pain side of my head. I did it 2x spaced four months apart. After the 2nd nerve block, in conjunction with 75 mg extended release Indomethacin daily, I was almost pain free for a year. A year later, the pain started flaring up. I returned for a nerve block and have been blessedly (almost) pain free for another year and counting (still taking Indomethacin daily).
Just thought I’d share this, so maybe you could see if an Occipital Nerve Block is an option for you.
30 November 2010 @ 12:34 pm
Hi AJ,
Have you been offered Multiple Nerve Blocks?
6 December 2010 @ 11:57 am
Hi Simon! I’ve only had Occipital Nerve Blocks on the left side three separate times. I’m interested that you were offered Multiple Nerve Blocks — good to know, I didn’t even know those existed and/or could be helpful.
19 October 2010 @ 12:20 pm
AJ, thanks for sharing. I wouldn’t need the Occipital Nerve Block if I could take the Indocin. The Indocin is what cured me. I can’t take the Indocin because it gave me ulcers and Crohn’s Disease. I just went back to the Neurologist last week however, and he increased my dose of Topamax to 175mg which is still not a large dose. We’ll see what happens. I still have daily headaches and constant tearing. He wants me to keep in touch with him and let him know if it is working or not. I go back in a month or I can call before. Keeping my fingers crossed.
30 November 2010 @ 11:21 am
I was diagnosed with Hemicrania Continua in October this year.Before it had been assumed due to an instant reaction with indometacin last year,i had Chronic Paroxymal Hemicrania.I had a tooth operation last year,which was very aggressive and went badly,since then the headaches became severe on a daily basis and not even Indometacin seemed to assist with the effeciency previously.
My local Neuroligist did not know why the headaches persisted and sent me to a Consultant in London who diagnosed me.CPH and HC,are related and a misdiagnoses is easily done.
Indometacin is a god send,but during the last 5 months was not effective at all.I have had x2 Greater Occipital Nerve Blocks,tried Topiramate(a poor substitute for Indometacin and has nasty side effects) and recently had Multiple Nerve Blocks(10 injections into various nerves in the affected area of head),which teamed up with Pregablin x200mg daily and 75mg x3 daily of Indometacin,seems to have calmed Headaches(if thats what you call it) down.
Just after my tooth Op,my Neuroligist (still thinking i had CPH,took me off Indometacin and substituted for topiramate (due to the internal bleeding) long term usage of Indometacin can have.The pain was so severe and attacks so vicious,i stayed on Indometacin,but as Headache continued with such severity Indometacin did not help and other pain relief was needed.HC may not be spotted on first diagnoses of one sided Headache.I had to try a multitude of drugs before i was given Indometacin.My Neurologist suggested i had CPH and if Indometacin was instantly effective then i had CPH.
The two most common triggers of Hemicrania Continua are Concussion and Tooth operations.It is most likely the diagnoses will be CPH and if instant reaction to indometacin continues to give absolute relief,then that is what you will have,
4 December 2010 @ 9:43 am
Simon,
Interesting…Who provided you the information of the HC triggers? I’ve never seen anything online showing those as precursors to this condition. I have seen some cases where dental work caused Trigeminal Neuralgia but that is pretty different. My HC started with small Idiopathic Stabbing Headaches 6 months after I had my (double impacted) wisdom teeth removed. I provided this info to my neuro and he dismissed it.
6 December 2010 @ 11:53 am
The senior Neurologist who gave me Greater Occipital Nerve block explained to me all this.Sufferers with TN have had Teeth removed(thinking the pain was attributed to Tooth problem) and later been discovered with TN.
Hemicrania Continua can evolve from Chronic Paroximal Hemicrania,which in my case the Tooth OP,was the catalyst for it.
4 December 2010 @ 10:11 pm
Well, the good news is my ulcers have cleared up. I just had a repeat endoscopy and my GI doc gave me the OK to go back on Indocin. So I have decided that after months of constants headaches, tearing, and blurred vision I am going to go back on the Indocin. The bad news is, I still have Crohn’s Disease and Gastritis and I suppose the Indocin could cause the ulcers to come back. I do feel that I need a break from the headaches that to this date the topamax has not really given me so I’m willing to give it a shot. Wish me luck!
6 December 2010 @ 11:49 am
All the best to you!!!
29 December 2010 @ 3:16 pm
I was told by my partners Grandmother that she had similar symptoms many years ago. She was misdiagnosed with several headache disorders for 4 years (had MRI’s, CT scans etc.) and they couldn’t figure out what was wrong. Then finally a doctor figured out it was chronic Sinusitis (nasal infection). 4 days of Penicillin cured her headache, facial pain, toothaches, runny nose, teary eyes…everything!
You can find out more about Sinusitis on Wikipedia (a lot of symptoms are consistant with HC):
http://en.wikipedia.org/wiki/Sinusitis
I’ve been diagnosed with so many headache disorders for over 3 years now, so I’ll be seeing my doctor ASAP to look into a nasal infection. I’ll post the results on this forum when I go and let you know how it goes. I’m really crossing my fingers that this is what it is. It ‘seems’ like something so simple to rule out – I’m surprised Doctors/neurologists never look into this. Thought this info might help others out there that have been diagnosed with HC and aren’t responding to Indomethecin or other pain medication.
30 December 2010 @ 2:25 pm
Oh no. This is not Sinusitis! No way on earth. It would take a neurologist who slept their way through medical school to misdiagnose HC as sinusitis. Not really similar at all. I’ve had both. Not similar.
3 January 2011 @ 11:19 am
I am 51 years old never had any headpain in my life until recently after going to three different doctors I was diagnosed with HC. I am currently taking topiramate 100 mg a day but the pain is still there. For people taking Indometacin I was wondering what dosage are you taking. Is this something I going to have live with for the rest of my life? I know I should feel lucky I don’t have cancer or something worse but sometimes the pain is so constant. Please let me know, thank you.
3 January 2011 @ 3:09 pm
My dosage is 75 mg extended release. Interestingly, the pain worsened when I went above this dosage. I went on Topomax for ~ 1 month and had horrible side effects and no added pain relief.
“Is this something I going to have live with for the rest of my life? I know I should feel lucky I don’t have cancer or something worse but sometimes the pain is so constant.” – I echo your sentiments
3 January 2011 @ 4:40 pm
Scott,
I’m going on 34 and have head pains for going on 10 years now. Three children 5 and under with a career…it gets tough most days. Indo and other NSAIDs were the only thing that helped me. I was diagnosed with HC this past February. Topimax made me forget where I parked my car several times…that one never helped me. Verapamil, Topiramate, Noratryptaline, Depakote, and atenalol were all attempted unsuccessfully by my Neuro.
I’ve been off of Nsaids for a while. I have head pain everyday but thankful for a supportave wife, wonderful kids, and my relationship with Jesus Christ. Unfortunately our bodies break down from the moment we are born and I’m thankful for everyday that I have on this temporary place called earth.
I hope you find relief soon.
John
6 January 2011 @ 1:52 pm
Good Evening Scott,
I am surprised you are not taking Indometacin aswell as Topiramate.Hemicrania Continua pain will disappear immediatly with Indometacin.Topiramate is only a preventitve Migraine drug and expains why you are in so much pain.
3 January 2011 @ 2:47 pm
Scott,
Indomethecin 75mg 2X/day worked for me. I started at 75mg and increased as needed. Work with your doctor. Now I am on 175mg topamax and 75mg Indomethecin. Hopefully I can stay at this without side effects with my stomach. Everyone is different so work with your doctor to find the correct dosage for you. It is like a miracle once it works. Good luck to you!
6 January 2011 @ 1:48 pm
Visited the consultant yesterday and after intensive review i have been diagnosed with having SUNA aswell as Hemicrania Continua.Suna is a in the same family as Trigeminal Neuralgia and its characteristic is short sharp neuralgic attacks one sided which last fron 1 second to 15 minutes.These attacks vary from moderate to severe and believe me are vicious!!!
The multiple nerve blocks combined with Indometacin x75mg daily have surpressed the Hemicrania Continua,which explains why i was experiencing severe pain for so long regardless of taking Indometacin.
Hemicrania responds instantly to Indometacin,so fortunaly due to the Hemicrania Continua pain being surpressed they were able to define Suna and now will be treating separatly.It is unlikely i had Chronic Paroximal Hemicrania initialy as Suna has similar symtoms as with Hemicrania Continua.
17 January 2011 @ 12:57 pm
I have had a headache for 2.5 years, been diagnosied as Occipital Neurlagia, nerve blocks, topomax, Physical Therapy, nerotin, nothing worked, got a new diagnosis of HC, up to 125ml of indo 4x daily with limited results, been taking indo for 4 months, starting to look for other idea’s
10 May 2011 @ 5:36 pm
Hi Everyone,
I started with severe head pain early Feb that has never gone away, at the worst peak I was in hospital for 3 weeks, I had a lumbar puncture so that didn’t help the headache!
I’m only 28 and never had pains in my head like this before. My specialist has just put me on Indometacin & Omeprazole, I’m a bit worried as I aleady have stomach adhesions, so far they don’t seem to be doing much the constant pain is still there (however I’ve never responded to pain relief well including morphine)
My Specislist wants me to go back to review next week, he has suggested the injections, I’m a little nervous… I’ve been in and out of hospital for years due to my stomach but never had injections in my head, can anyone let me know if they hurt and what to expect? I would be really grateful!!
Thanks
Nikole
14 May 2011 @ 9:10 am
Has anyone tried Mexitil?After being infused with Lignovaine during a 10 day stay in Hospital the Consultant suggested this treatment to mirror the infusion.I have been currently taking this for 4 weeks now and have not really impacted.Last week i had horrific 4 days continual Hemicrania and Suna.As this drug is Toxic,had to practically give up coffee,smoking and alchohol all in a short space of time.The monastic l;ife awaits!!!!!
19 May 2011 @ 5:34 am
Nikolee: Injections are worth taking a shot!
I get injections in my face of sensorcaine and steroids. I get them in three locations on my face: in the notch on my eyebrows, on my cheek bones close to my nose, and on my chin. They are painful but not as painful as hemicrania. Some times I get small bruises and the injection site swells a little. Your face feels numb like a dental freezing all over. Its a good idea to take 800mg of ibuprfen an hour before the injections. The pain relief is immediate and complete. At first I passed out because my blood pressure dropped from the pain relief. The relief only lasted a few days after the first injections but each time I get them the pain relief lasts longer. I’ve been getting the injections for two years now and the relief is lasting for three months on the left side and six months on the right. I have had pain on the left for seventeen years and pain on the right for eight. I still take verapamil and low dose topiramate all the time and when the injections wear off I take indomethacin until I see the neurologist again. I am now virtually pain free for months at a time. I have a life again. I haven’t been hospitalized in a year and a half. I haven’t had any more surgeries. I am no longer taking opiates, cessamet, oxcarbazabine, gabapentin, nortriptyline or daily indomethacin. My stomach no longer bleeds and I’m not depressed. I don’t remember the last time I threw up.
I couldn’t even feel the first injections because my pain was so bad that all I felt was gratitude and relief. I only feel them now because I am in so little pain.
I am going back to school, I am playing with my son, and I wake up laughing in the morning. Yesterday I baked muffins and gardened. The risks are low and the rewards very, very high.
Anne
5 October 2011 @ 6:00 pm
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
29 November 2011 @ 2:37 pm
Huh. Not one of the misdiagnoses listed have to do with being overweight. First, I was diagnosed with sinus infection and was stuffed full of prednisone and antibiotics, which caused my weight to increase 30%. After that, every doctor I saw said I had a headache because I was fat, even though I didn’t gain the weight until after I got sick. I did not know that being overweight could cause constant, severly debilitating headaches, but it must be so because that was the first (and usually only) diagnosis that I got from five different doctors. After several years I eventually found a doctor who diagnosed me with hemicrania. I have the condition under control, but I still get flare ups and it interferes with my life. The whole experience left me with a very negative opinion of doctors.
4 October 2012 @ 12:27 pm
Hi all, this has been really interesting reading. I was misdiagnosed with all sorts of conditions for 7 years and for 2 years was given NO medication whatsoever as I was told my condition was due to medication overuse. Finally after the two years of taking no meds whatsoever I convinced my doc to refer me back to the neurologist who agreed that this could no longer be the case. This was the worst two years of my life by a long way. Finally after more misdiagnosis the neurologist had a hunch and tried me on Indomethacin. It worked better than any other drug and ta da, diagnosis. Unfortunately I do seem to have a sensitivity to drugs (I had Toxic Epidermal Necrolysis when I was 6 weeks old thanks to a reaction to penicilin!) and can take no more than 25mg when I have the flare ups otherwise I get bounce back headaches. This means I’m still in pain all the time but at least I can treat the bad times, mostly. Anyway, thought the bounce back stuff might be useful to some (the pain is almost as bad as the HC flare ups, the only way I know the difference is that the bounce backs are on the opposite side.)
Interested in Melatonin though, have heard a few people say this has given them relief.
Here’s hoping for a miracle cure soon 🙂
11 March 2013 @ 11:07 am
Most of the posts here are older, one to two years old but I can’t really find anything current on the web and wanted to post just in case someone reads this and can offer some insights. After more than 3 years with constanct pain (eye socket and surrounding area, at times also base of skull and side of neck – right side only). Tried physical therapy, accupuncture, chiropractic, massage, relaxation and occasionally advil (which did not help much). Finally read an article on a condition that fit me to a T (hemicrania continua) and went to see a Neuro who came to the same conclusion and prescribed Indomethacin 25mg 3x day. I was worried about side effects and not sure if this would help so postponed taking it. Started a week ago – wow – within 2 hours the pain was totally gone – remainded pain free nearly 24 hours, just on that one pill. I have now learned to wait till I feel the pain creeping back on to take the pill; thus far one pill about every 24 hours seems to work.
Is anyone out there who was taking just 25mg Indomethacin/day for HC? If so, how long have you been taking it? For those who developed stomach problems, how long did it take? How did you know the problems had developed?
Would appreciate all info that anyone can provide. Thanks.
13 March 2013 @ 1:31 pm
Orchid, yes indomethicin is a great cure for HC but be careful. I took 75mg 2x/day for about a year and was symptom free but developed bleeding ulcers in my colon. I found out when I was feeling weak and went to the doctor complaining of flu-like symptoms without fever. She ran some blood work and my hemoglobin was 7.5 . I was immediately admitted into the hospital. No more inducing for me, ever. Now I take topamax. It doesn’t take away the headaches completely but I’ve learned to live with them. My eye still tears continuously and I have blurred vision. My neurologist wants to up the dosage but I really don’t want to do that right now as my stomach problems have turned into Crohn’s disease. ( don’t worry,that’s not from the indocin)
Good luck with the indocin. Just try to take as little as you can.
16 March 2013 @ 9:32 am
Thank you Marsha! Very useful advice. That exactly is my concern regarding long-term Indo use, and somewhat dampens my near euphoria for being pain-free for now. Hopefully the medical field will uncover new information about the condition as well as safer ways to treat it. Thanks.
11 March 2013 @ 3:23 pm
Hey all! Just an update to let you know I’ve had almost total relief with a 9 mg nightly dosage of Melatonin. I tapered off the Indocin completely (had been on 75 mg extended release for 5 years). It’s been about 3 months now just on Melatonin and I’m still almost pain free.
16 March 2013 @ 9:45 am
AJ, sounds promising. While transitioning to Melatonin, did you continue to take Indo while introducing nightly Melatonin?
14 March 2013 @ 3:01 am
Hi,just an update.I suffer from Hemicrania Continua and SUNA and have finally recieved funding to have Occipital Nerve Stimulator operation.
I tried all the tablets the consultant had to offer with no success.I am now in my fifth year of suffering and am excited to have the op.
However the process has been long and each day i am more of a recluse and bedridden with continual severe pain.
I find it strange that even when a condition is refractory an application for funding is still necessary.
The suffering and devestation this illness brings to daily life and the people around you is nothing short of complete hell.
A domestic pet would not have to suffer for so long whyn should we!
11 March 2015 @ 1:53 am
Hi Simon, I too have HC with a long misdiagnosed path with severe cluster jolts at times. I am partially responsive to Indo. I MUST say to all. Indo is available in a Suppository via normal pharmacy in USA and while it can still have a GI/liver effect, the chances are vastly minimized. Many seem to struggle with GI and are not provided the option. PPI and full blood work up need to be done shortly after Indo usage so that a baseline renal-kidney and liver function is known so that ongoing comparisons can be made. Do not wait until your symptoms are present. Liver and kidney symptoms can be broad and masked by those of pain and the side effects of other drugs as well. Many patients are using other drugs with renal-liver impact as well. Considering severe stomach issues and HC is not a fun situation. I hope you are feeling better. My question to you is, what do you mean by “funding” and how did you find it for a neural stimulator. To my knowledge in the US insurance is highly limited or unavailable to most. A note to you as well, my HA neuro is able to provide an external ‘trail’ without need for implantation first. I am unsure if this is stimulator specific or universal. My HA neuro is Dr Roderick Spears, a Penn HA specialist with research interest in HC. He has had good results with stimulators.
14 March 2013 @ 7:49 am
I have been on mobic 15 mg a day for the past year. It has helped me greatly with my HC. Not as powerful as Indo but the risks of this nsaid are greatly reduced. I large part of my HC are the idiopathic stabbing headache or ice pick jabs an jolts.
26 December 2013 @ 1:01 pm
Has anyone has difficulty with significant weight loss while using topamax for their HC. I had to stop using Indocin due to stomach bleeds so now I have been taking topamax but experiencing severe lack of appetite to the point where I am totally turned off by food completely and have even gone to a liquid diet. I have heard that topamax has been used as a diet drug which is not good for me since I tend to be underweight to begin with. So now my doctor and I are trying to play with the dose of topamax which will keep the headaches at bay but will allow me to eat. Anyone else out there with similar situations???
15 September 2014 @ 9:06 am
My husband has HC, he went for over a year with a left sided severe headache with sharp shooting pain, 24/7. We went to numerous Drs and horrible pain drugs (including Oxycodin, among others), trying to figure out what was going on with no success. We finally went to the Cleveland Clinic and got his HC Diagnoses. He used the indomethecin and it worked the first time, once the headache was gone discontinued use as per Dr. . Headache came back several months later and indomethecin would no longer work. So he just suffered with it until it eventually went away months later. Recently he got another headache, and just took 8 Aleve through out the day and by the next day it was much better. By the following day headache was gone.
13 March 2015 @ 8:47 pm
I hear people say that it may help but it could harm.
TRUST me, if you have HC you will try Indomethacin, if it works, you’ve found a miracle.
If it is dangerous, who cares. The person is you. Relief from the pain of HC is worth everything.
My point is try and do everything to not have the pain of HC.
There is hope.
http://www.hemicraniacontinua.com
Mark
28 March 2015 @ 9:21 am
Hello, it has been a while since I posted here but after reading Mark’s comment, I had to reply.
He is absolutely right. If Indomethacin works for you, there should be little argument going on whether or not you should take it.
Meloxocam (mobic) works for me as well. I discovered this after taking one pill from my wife’s back surgery in 2011. I didn’t have a flare up all day…it worked for me for an extended period of time.
Now for the hopeful part: My HC is subsiding. If you can believe it, I suffered with this awful and painful one sided headache for 13 years and it is starting to ween away just as a storm is finally moving out of an area. I get minor twinges but it is subsiding. I feel better in my (late) 30s than I ever did in my 20s. I haven’t taken a meloxicam in weeks. It has been years since I took Indo.
Thankful for Vanderbilt University doctors that diagnosed me in 2009 after YEARS of trying to find an answer. Indo and Mobic allowed me to live and now it seems like the storm is passing……
19 October 2015 @ 10:02 pm
Hi all – I know this thread is pretty old, but figured I would post anyway in the hope that people check on from time to time. I was originally diagnosed with trigeminal neuralgia (type 2 or atypical facial Palm) by a dentist and a neurosurgeon. My pain started out very intermittent and i was convinced it was a toothache from a molar. I would go months without pain after taking a few Advil. Then I got pregnant…and it basically rocketed to a different level. I’d wake up pain free and then as the day went on id start to feel it tingling and then peak in the evening – would alternate between burning, pinching, feeling like constant cold sensitivity and sometimes would come and go throughout the day. Post pregnancy the pain has been near constant….increasing and decreasing in severity throughout the day.
I saw a neurologist who suggested HC because I also had some of the nasal and eye symptoms concurrent with pain flare ups. I started indomethicin months ago and had some success but I was not very consistent with it and would have breakthrough. I had a cold last week and since then (and with sudden temperature drop) I’ve had a bad flare that the indo doesn’t really seem to touch.
Sorry for the novel, but I guess I’m wondering 1) does anyone get flares after/during an illness or big weather changes? 2) can indomethicin relieve nerve pain relating to trigeminal neuralgia — I know HC is only responsive to indo, but would indo also be effective for TN? 3) does anyone with HC have pain primarily in the gum/jaw/ear area? 4) does anyone notice a correlation between severity of pain and hunger?
Again sorry for long post and I appreciate anyone who takes he time to read and might have some insight. Thanks so much!
3 July 2016 @ 12:03 pm
Hi Amanda –
My husband has suffered from HC 10 – 12 years (feels like forever!). Indomethicin is the only drug that has helped him. It seems as though weather changes, hunger, stress – among other things – can start a flareup but, as you know, there would be pain everyday anyway without these trigers. About 5 years ago trigeminal neuralgia came into his life! This is more of a hot poker, stabbing pain and is more noticeable in the face and jaw areas. Tooth removed recently. That did not help at all. Also, it went away for about a year and now is back with a vengeance! I don’t think the indocin helps at all for the TN. Hope you have found some answers and relief by now.
11 December 2016 @ 3:03 pm
Hi Amanda
I was in the same boat. I was diagnosed with atypical facial pain for years but recently neurologist diagnosed me with HC. Indomethacin worked great for two three days with 75 mg. later I still have pain but can manage it. I had MRI and they did say my nerve is little close to artery. My neurologist is convinced I have HC. I used indocin for 6 weeks and she told me quit taking it and go on verapamil and melatonin. I have pain in my right upper jaw area jst below the cheek bone and it feels inside my upper palate of right side. I don’t have any head ache.
Does anyone have similar symptoms in the face.
20 October 2015 @ 2:57 pm
Hi Amanda. My Grandmother suffered with TN for at least 50 years. When it stopped responding to meds she had surgery to sever the nerve. That was the only thing that gave her complete relief with acceptable side effects. She did however live to a wonderful age of 96 which gave time for that nerve to regenerate. She was no longer a candidate for surgery. She tried nerve blocks and many meds including neuronton, and others. Her pain was nothing like HC pain. It was worse. I know because I have HC and know where I have pain vs where my grandmother has pain.
16 February 2016 @ 7:24 am
Has anyone tried the daith piercing for Hemia Cranium Conitua? I am on Indo now but know how terrible it is for your stomach. I have heard from so many people that with their daith pierced they are now 100% headache free and have been for over 4-5 months. I just don’t know if it helps HC or migraine patients only. I got one yesterday and am on my knees praying this gives me relief without having to take all the meds (including) narcotics that are so bad for you.
19 May 2017 @ 5:12 pm
I could not take indomethacin (killed my pancreas) nor melantonin (severe muscle cramps at therapeutic doses. I lucked out and have an occipital stimulator which keeps my pain at around a 5 to 6 on my personal pain scale. Before that I was hitting a personal 10 every 3-4 days. For me a 10 is I cannot talk or walk just shake and cry and not be able to control my body, and my bp goes into the stratosphere. I use a combination of 3 IM meds to control breakthrough pain. Benedryl, Phenergan – and if they do not drop the pain, then I have Dilaudid I can use generally at that point to knock myself out. It only takes a small amount to do this in combination with the other two meds. I use IM because by the time it gets that bad I cannot keep meds down.
I cried when I no longer could use indomethacin. Because of the pancreas issues I was even hospitalized to withdraw off indomethacin and the pain was so horrid they put me back on it. I have the pain on the severe end of the spectrum. It never was completely controlled by the indomethacin but it was the only med that helped. It took nine months to get a diagnosis and another year and half to get the stimulator. I also have intermittant stabbing headaches on the same side as the HC. Nothing helps those but they happen and then stop which the HC cannot do. Good luck all.
10 February 2018 @ 7:58 pm
Last week I was hospitalized for a GI bleed, which may have been from the Indomethacin. Doctors were quick to take me off the Indo. I have had great results with the Indo since my Hemicrania Continua headache started. Luckily I found a Neuro/Oncologist that listened to me and diagnosed me. I have been off the Indomethacin now for 10 days and now headache is back. I will never be able to take the Indo ever again as I also have Crohns. We always knew I could have problems I just was not ready to accept it because the Indomethacin worked so well. Doc put me on Depakote we will see how this goes. Any comments, stories about the Depakote would be helpful
3 July 2018 @ 11:07 pm
Although Indomethecin can have nasty side effects, there is a slightly less potent drug called Tivorbex which also works. And if they both produce intolerable side effects, as they do for me, Amytriptilline can work, and it’s not expensive. Or yu can get a compounding pharmacy to make a very low-dose Rx of Indomethecin.
I was recently diagnosed with Hemicrania Continua, after 20 years of misdiagnoses. (Although the migraine medication Rizatriptan sort of worked, I knew something else was going on.) It was finally diagnosed by a very smart TMJ specialist!