Well, today I finally saw the headache specialist neuro. I have to admit that I had perhaps unrealistically high hopes for it... "Perhaps he can give  me my life back! Perhaps he knows what's wrong! Perhaps he can subscribe some magical medicine to make it all better!" and so on. I knew that it might not be so, but I really hoped. I'm sure you all know the feeling...

Basically, the doc went through my list of medicines and my symptoms. He was thinking that the diagnosis isn't quite clear, because I have pain nearly all the time and I don't have the episodic periods of pain typical to CH (...ehm, ever heard of shadows? Chronic CH?). I also told him that to my particular case, the things which help best so far are corticosteroids, which make me pain and symptom-free, and then NSAIDs, which seem to help just a bit every now and then. He said that he could rule out the possibility of some very rare infection with a lumbar puncture, but from a clinical perspective he considers me having such an infection causing the symptoms of CH without a fever extremely small. Also as it would be painful to do, he doesn't want to put me through that unless I really want it. To that, I just laughed and said that I'm in pain anyways 80% of the time, plus the daily attacks...the pain caused by the lumbar puncture is just a mosquito's fart in Sahara, as we say in Finland :)

Considering the meds, he said that I shouldn't abandon Verapamil, because it's usually effective. When I told him that I used it for weeks and the dose of 480mg / day gave me really difficult side-effects, while not helping with the attacks at all, he said that it might not help because my CH-attacks are so difficult at the moment, but might help when they get easier. I just didn't say anything to that...why suffer from constant fatigue, heart problems and extreme constipation when the headaches get easier?  :-?

I asked him about lithium, to what he said that it's not usually used for CH anymore - that it's an old medicine. Considering methysergide and intravenous DHE, he said that such treatments are not used in Finland (!). I don't really understand that...if there's a chance of something helping, why not use it? :-? When I asked how difficult the side-effects of lithium generally are, he just opened his medical book and read from there. I was surprised...I would have thought that a neurologist specializing in headaches would know an answer to that question without consulting his books.

Anyways, he said that he can put me on lithium if I really want it, but first he wants to try out Lyrica. It was something I remembered many here have tried and a few even with some success...so I agreed. The lumbar puncture can wait until the trial with Lyrica is over, provided that it doesn't help. For now, it's 75mg every morning and evening for a month.

Have any of you had good experiences with it? If that doesn't help, I think I'm looking forward to trying out the shrooms more than another visit to this neuro...at least they should be available in around 1,5 months from now.

- Best regards and PFDAN,
Rosa

Ah! Another example of: when you cross political boundary lines you also change cultures!

Suggest you print both of these articles and use them as tools to discuss treament  options with the doc.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)

I have my next neuro appt. on October 6th.  I cannot wait to talk and from what I remember in our last visit in 2005, he seemed pretty open about whatever works for you without harming your health, JUST DO IT!  However I left with a bottle of Topamax that he gave me to start off with on a plan.  I threw it in the trash when I got home and i'll him that after I read the side effects.  I plan on telling him the results of shrooming in the past and i'll be quite interested in seeing his reaction.  I don't want to make him out as a closed-minded neuro like some, unless he disagrees with what worked for me in the past.  That being illegal.  You know, for some neuros it's their way or the highway. I'm really going to get that O2 script for home abortive techniques.

Rosa,

Who was the doc you met? (You can send the name to me via PM if you like.) I'm curious if we have met the same doc along the way.

I hope that you will get PF time very soon,
Sanna