Thanks Deb for your encouragement. When I called my PCP he thought it a good idea to try this neurologists "experiment." My husband said he's certain I do not have migraines. He's known me now for 30 years and I did not have a headache problem until after the craniotomies. He's worried about me going thru this experiment and landing in the ER again. IMHO it seems like Dr Silberstein's idea (from ANA tape) is correct, that we have migraine "features" or whaever type of headache, its often we have a post craniotomy headache with a certain kind of feature. I think this particular neurologist is not too experienced w/PCH, but maybe that's OK to a certain degree. I say this because he seems to think I'm just simply a migrainer. This does not add up but if we can work out a plan that wrks and not too much side effects or dependency issues--that would be cool.
I liked this neurologists analogy about chronic daily migraine headaches. I'd not realized all the pains and odd sensations we can get are concidered chronic daily migraines. OK here's the analogy: These pains, jabs, stabs, zingers, heavy feeling etc are like sparks, hot embers, little flames licking and smoldering in a dry forest. There is always potential for a big forest fire to break out at anytime. In my case, when I travel and get jostled about its like throwing gas on the smoldering stuff in the forest. Once the fire starts (vomitting) there is no way to stop it alone at home not even w/antinauseates at least in my case. Therefore I have to head to the hospital to help put the so-called forest fire out. The idea behind these long acting meds is to keep even the smoldering embers smothered so nothing can ignite or a full on migraine w/vomitting does not even start.
Today my PCP called back and he's already talked to the neurologist. The first part of the experiment we'll try the Topamax and I'll continue w/the MS Contin as well. They decided I could do both to start. If this does not help there will be a dilemma as to whether the Topamax did not work because it did not work on me or if it didn't work because of the MS contin. But if it does help eliminate the embers from burning, this might be a sign I can start backing off the MS Contin. The backing off the MS contin will likely be a real bear, but maybe it would help if I'm on the Topamax. Be nice to go off the MS contin. I'd not gone in it n the first place if I'd not had those incidents where i went to the ER. My insurance plan covers 70% after a $2000 deductable so it adds up fast. we can't afford for me to land in the ER over and over, hence the more aggresive treatment.
Deb its encouraging you have had so much luck w/topamax. It sounds like Diamox which I've tried before. Do you get any side effects now? Does the Immetrix help to abort? Is the pen easy to use? My husband and I are going on vacation in about 10 days, so I'm going to wait to start the experiment until I return. BE neat to better define these headaches.
