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Topic: Frova, Lyrica, and my neuro appt (Read 259 times) |
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Lizzie2
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Frova, Lyrica, and my neuro appt
« on: Sep 21st, 2005, 8:54pm » |
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Well went to the neuro today - quite good...which is always nice. 
Few things:
-He felt taking Frova preventively probably serves the purpose of the no longer existing (in the US) Sansert (known to many as methysergide). Told me it would be some battle, but we could work so that I could take Frova preventively twice daily. Although I almost bit my tongue by asking this, I did inquire as to whether or not this might be dangerous for someone with avascular necrosis....afterall, he said the greatest risk was perhaps vasospasm....that made him a bit more skeptical about my trying it, but I was persistent. Told him while we go down another avenue, that I'd stockpile it for when I may do this and for the time it would take for an insurance battle.
-Lyrica (pregabalin - of the antiepileptic class) finally came out in the US ala Pfizer. He's been talking about it for over a year. So I began it tonight....taking 75mg at bedtime for a week, and increasing to two twice daily until my next appt in 6 weeks. Hope it works as well as the Germans say.... heh heh This is ultimately the thing we decided to try at the moment as he thought maybe it's a safer option for me than Frova while we still have preventive options.
-May start up Kudzu again if all else fails. In case anyone forgot, I was the one on Kudzu for 1.5 weeks or so before I had my massive hemorrhage in April, and I was yanked off it because it was the only new variable at a time when I should not have had a massive bleed. On Monday, the ENT said everything looks great (although I still feel like crap) so I didn't bother asking him if it was okay to restart the Kudzu. Figured to hell with it, if it looks fine, it must be. I am having a follow up Sinus CT w/Stryker next week to see just how "great" my sinuses are.
-He's doing a repeat "sed rate" or in long terms Erythrosite Sedimentation Rate (crap...no idea if that's spelled right...) - a nonspecific test for inflammation. I certainly have problems with severe joint pain and inflammation as well as daily fevers and fatigue plus a constant sore throat. May be a possibility that I have Chronic Fatigue Syndrome as I've long suspected, but at the same time, there would be no real treatment changes for me - nothing solid on CFS - already was diagnosed with fibromyalgia some time ago, but the only thing we ever tried (Prozac) made me nuts. (Go figure.) We'll see what the sed rate shows - my last 2 were high but trending down. He's also convinced that Jefferson always has high sed rates for their patients.
And so finally - that's really about it! Suffering from a terrible bout of laryngitis at the moment - can't talk at all so I'm 'resting' my voice...hah. I sounded quite interesting over the intercom today saying, "respiratory please come to the treatment room" - I'm not sure they had one clue what I actually said! Bad bad lungs and voice box. Swear I'm ready to suction out my own lungs! I'm a mucus producing maniac thanks to all the wacky lung genes running around my family....my lungs suck.
Just wanted to give an update - sorry it was so lengthy but hope it's of some interest. I'm also still on Lamictal, which has been a godsend for my basilar migraine. Verapamil for CH, migraine, hypertension, and tachycardia. Petadolex for...well...just to see if it helps...been 2 months there. I think that's it as far as the heavy hitting prevents. Take a few other meds for other things, but that's irrelevant to CH.
Time for this babe to try to sleep (heh sure.....I think I should just sleep with the O2 glued to my face is more like it!) Tomorrow and Friday are a bit of a break...I'll be at a Newborn Course at a hospital 5 minutes from here. Really find it odd to learn about newborns at this point in time, but so be it!
Carrie
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Kevin_M
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Re: Frova, Lyrica, and my neuro appt
« Reply #1 on: Sep 21st, 2005, 9:54pm » |
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Glad you're exploring new avenues out there available to you. Hope the best that you get some preventative help. Glad you are getting relief for the "other" headache too. 
Very berry best to you Carrie.
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ozzy
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Re: Frova, Lyrica, and my neuro appt
« Reply #2 on: Sep 22nd, 2005, 9:32am » |
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Carrie,
My neuro gave me Frova as a twice a day preventative. Didn't work.
Amerge for me so far has been the key. For breakthrough hits, it's O2 with the Clustermasx. (BTW it is sooooooo fantastic, it's leap years ahead of any other mask, talk about tight seal...)
I hope Frova works for you and gives you a big break.
Ozzy
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Lizzie2
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Re: Frova, Lyrica, and my neuro appt
« Reply #3 on: Sep 22nd, 2005, 3:43pm » |
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Ozzy,
I'll have to look into the Clustermasx....Helen gave me the link awhile back, but with all that's been going on, I haven't had much time to look into it! Have my traditional nonrebreather with the rest of my 'gear' I've acquired.....bubbler, regulator, etc (Thanks to Jonny and Bill)
Both Frova and Amerge are tried and true 'prevents' for me. This is a great thing because no other triptan really helps me - and even if imitrex did, I'd probably die of heart problems first LOL
As of right now, I take Frova on the mornings of my 12 hour work days. Keeps the migraine at a tolerable level for about 8 hours and the beast away for about 13 hours for me. I take the Amerge on the mornings of 8 hour days. Works pretty darn well - not always the full shift, but good enough.
He only wanted me taking an abortive like that on 2 days a week, but I told him take it or leave it because I work 4 days a week and without the Frova and Amerge, I am not able to work at all. Now he's gotten to the point of my trying Frova preventively....we spoke about Amerge, but Frova seems to be okay, and he likes the idea of my trying that better than my taking the Amerge preventatively just because it lasts longer for me.
Hope you find success with your Amerge prevention!! I read your post last night on the thread you started re: Kudzu and neuro appt. I started writing back because I take petadolex, but then I hit some key and lost what I'd written. I have to order more of it - not sure that it's done anything for me, but also not sure I want to quit taking it and find out that it HAS helped but I just didn't realize...
Carrie
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