Sunday, February 12, 2012

Tired and fed up :(

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.

12/30/08 10:33am

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

Anonymous
Monique8224
1/ 1/09 3:01pm

I've been taking Topamax (75mg) twice a day to prevent migraines. I think this works, but I still get severe migraines several times a month-sometimes lasting 3 to 4 days.  My neurologist (whom I'd been seeing for 4 years) had prescribed amitriptiline, depacote, lyrica,imatrex, and I don't know how many other maintenance medications for these migraines - all provided little or no relief. I usually had to take several Tylenol PMs or any kind of pain reliever with a sleep additive (usually 4 capsules/caplets) to get rid or or make my migraine less excrutiating.  On my last appointment with my neurologist (who's really an expert), he said that he's done all he can to treat my migraines and that my particular case was very complex. He referred me to another colleague whom I see at the end of January.  Today, I've got another one of those migraines. I'm just waiting for the pain to ease. It' s disheartening, because I can't do anything. I'm just hoping that this new specialist will come up with something/anything that stops these migraines permanently.

1/ 1/09 10:58pm

I am currently taking 150 mg s of topomax and as soon as i feel a migraine coming on i take Frova and two Aleve with it. The Aleve has done wonders especially around my period. the newer Imatrix pill Treximet is the same combination with the Aleve added. This is a great pill too. Try either one they both work. If your doctor does not give it to you, it's time to find a new doctor. Let us know how it works out.

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