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.
Popularity: 7% [?]
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{ 10 comments… read them below or add one }
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.
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.
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?
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?
Marsha,
Fellow HC sufferer here – did your HAs come back pretty severe after discontinued use?
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.
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?
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.
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!
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.