Does anyone else have Chronic Paroxysmal Hemicrania?

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Does anyone else have Chronic Paroxysmal Hemicrania?

Post  metalchick73 on Fri Jun 13, 2014 10:03 pm

Two and a half years ago, I was told that I had cluster headaches by the nurse practitioner at the PM clinic I was going to; but today after going to Vanderbilt Neurosciences Clinic and seeing a well respected and knowledgeable neurologist, he advised me that it wasn't cluster headaches, but a much rarer form of headaches called chronic paroxysmal hemicrania. I don't know much about it, other than it is more prevelant in females than males, unlike cluster headaches, and indomethacin is what works best; but unfortunately I have an ulcer and can't take it. Can anyone give me info/advice on it?

Posts : 6
Join date : 2014-06-10
Age : 45
Location : Portland, TN

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Re: Does anyone else have Chronic Paroxysmal Hemicrania?

Post  Brenda L. on Tue Jun 17, 2014 7:31 pm

I have constant severe status migrainosus, which I think is pretty close to chronic paroxysmal hemicrania (or hemicrania continua). I've been to several headache specialists, and even they are unclear as to exactly what to call my condition. It's something very rare, so I've been told.

I've also heard of 'cluster migraines' which may have been what I suffered from in the past, since my migraines would come and go for several months at a time.

Now my severe migraine pain has gone 24/7 constant, for the past 3 and half years. I'm a 25 year sufferer of migraines and I've tried everything under the sun, to no avail. Indomethacin did NOT help me, so maybe mine are NOT chronic paroxysmal hemicrania. I am female.

Were you able to try indomethacin at all? Did it help you? I think that's pretty much the test to see whether or not you have CPH----whether or not you respond to indomethacin. I know you said you have an ulcer.

I'm currently seeing a PM doctor, too. It's the only way I'm able to function at all. Sorry that I can't help you any more. Is your pain level severe? Are you able to function? I'm glad that at least PM seems to be helping you. Good luck to you!

Brenda L.

Posts : 63
Join date : 2012-12-14

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