The common migraines I have been reduced in frequency after I started preventative medication. Still have them occationally, once a month or 1 in two months if I' lucky. This is to live with, compared to having six migraines a month.
My problem is another headache issue. Symptoms resembeling cluster headaches without really being that. I get attacks during the day with pain in/around my right eye, eye may run or just feel irritated/puffy. Stuffy nostril, problems staying calm. Freqency have been all from one to twenty during a 24 hour periode mostly 5-10, lasting 15-20 min. Never woke up at nights from headaches. Or... Sometimes I am unsuere of wether I have woke with headahce or from headache... The pains are not so excruciating as assosciated w/ cluster. My neurologist and I thought of chronic paroxysmal hemicrania, and he put me on indometacin.
Response to indometacin is diagnostic for paroxysmal hemicrania, and it provides little relief for me - even on 75mg x 3... So that means that we are dealing wiht something else...
These symptoms came after I in fact had a full blown Horton's (cluster) attack back in june - which is some of the WORST pains I have felt. Also an episode later on, but not as bad. Now there are days where I have constant pains to my rigtht side, like someone is trying to rip my ey/temple area apart. I have flare ups where the pains get more severe then before. Some days I have this headache, which end in a more severe episode of maybe half an hour. Afterwords the headache is gone. This makes me exhausted. It happened on Christmas Eve :(. I don't know if those days with constant headache are a combo of migraine and my other unexplained issue, my neuro have to evaluate that.
Some time ago I had a chat w/ my neuro on the phone. He had to cancel the appointment he had made w/ me, but all he had to say was that they had discussed my case at the clinic and that I should try the high dose of Indometacin. My next appointment w/ him is at the 5th of Jan, and I don't really look forward to it. Noone seem to have an answer, I don't fit the textook. This is exhausting for me, trying to lead a life as normal as possible and try to ignore the pains. It's exhausting mentally, because I don't know what I have.
As the diagnosis are a mystery, I find it incredibly difficult to tell people around me what I am going through. I want a name for this monster! Now I'd even accept "some atypical something". I am so fed up now, and dont know how much longer I can put up with this. I have Sumatriptan ienjections, but I haven't dared using i because I had highly uncomfortable side effects to the same drug as pills (50mg). Forgot to ask neuro, I'll bring it up when I see him.
And no pain killer works for me.. A am immune to the most commonly prescribed analgesic in Norway (Paralgin forte or Pinex forte - which is 500mg paracetamol+30mg codeine phosphate). This has nothing to do with overuse, I just don't react to it. Several GP's have told me I must have an overactive metabolism for the drug. Another is Tramagetic (tramadol), but I can't take that due to epilepsy. That's very frustrating, since that works for me. The only times I have been given this have been in hospitals.


Hey there,
I just had a thought.
I bet there is a large University around associated with a teaching hospital and or clinic you could look into if you are not getting anywhere with this neurologist.
Good luck
Nancy