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Topic: I made it to the Neuro visit, yeah! (Read 319 times) |
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Miz_D
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Me and my amazing hubby Steve
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I made it to the Neuro visit, yeah!
« on: Oct 16th, 2007, 4:21am » |
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Met with my temporary new neuro today and had a very interesting appointment with him. He seemed familiar with CH in a 'text-book' way, where as I come from the personal experience angle. It was fascinating where we agreed and where we seemed to have totally different views. But that's alright, as long as we work collaboratively, right?
So, my medication regimine to deal with these uncontrolled breakthrough attacks is:
- continue talking 1080 mg Verapamil daily
- Add Prednisone taper starting at 80 mg per day
- 25 mg Topomax at bedtime
- 9 mg Melatonin at bedtime
- 500 mg Magnesium
Add to this 2 meds for menopause and a multi-vitamin...and I feel like a walking pharmacy! Don't care though, as long as it works.. 
For preventative he added 10 mg Olanzapine (thanks Bob!) to my arsenal which includes Maxalt, Imitrex Inject & 02. Whew!
So I thought I'd add my own little twist and while I was at the pharmacy picking up my goodies, I grabbed an eye patch for my eye because it is ultrasensitive to light or photophobic almost all of the time now. Thought maybe I could wear it while I was doing my housework all I need is a parrot for my shoulder and I've got my halloween costume sussed...Arrrrr 
Thanks for being here everyone and sharing your info and experience...couldn't have made it through till today (with my sanity intact) without ya!
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E-Double
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Re: I made it to the Neuro visit, yeah!
« Reply #1 on: Oct 16th, 2007, 5:48am » |
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glad you had a good visit.
Did you mean Olanzapine as an abortive?
Probab;y as you listed it with your others....
I have had a lot of success splitting it (5mg) and have had it abort as quick as trex; 5-7 minutes with absolutely no side effects with exception to the very first time i took it of which i was a bit zoned out for a few minutes. after that it was the only thing which pretty much left me completely pf after an attack.
good luck
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Brew
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Re: I made it to the Neuro visit, yeah!
« Reply #2 on: Oct 16th, 2007, 7:32am » |
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Better living through chemistry.
It's kind of a motto around here.
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Guiseppi
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Re: I made it to the Neuro visit, yeah!
« Reply #3 on: Oct 16th, 2007, 10:22am » |
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Careful with the magnesium...it'll...shall we say...loosen you up a bit! I take it daily as part of my prevent routine in and out of cycle!
You're right, finding a neuro that'll listen to you is worth their weight in gold. Hope the routine breaks it for you, good luck!!!
Guiseppi
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BarbaraD
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Re: I made it to the Neuro visit, yeah!
« Reply #4 on: Oct 18th, 2007, 8:06am » |
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Did he up the topamax after a week or so? 25mg has proved useless in the past for most. That's why a lot of people quit taking it. It's usually upped over a period of weeks to at least 100mg to be effective over a long period. (I've been on it since 99 - take the WHOLE dose at night to eliminate the side effects - do it that way regardless of what the directions or doctor says - trust me on this one!)
My neuro started me on 75mg and upped it to 150mg after a week in 99. Stopped a 2 year long "BAD" cycle (and I was in BAD shape at the time) almost immediatly. Took me about two weeks to realize I was not getting hit and I could go outside the house - I don't think anyone who hasn't been there can realize what an experience it was to have a life back.
I wish you nothing but PF days and nights.
Hugs BD
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Bob_Johnson
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Re: I made it to the Neuro visit, yeah!
« Reply #5 on: Oct 18th, 2007, 8:40am » |
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Dr. Rozen, who first reported using olanzapine as an abortive, ran a trial to see if it worked as a preventive. He reported that it did not.
Your Verap. is the best preventive for most folks.
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Bob Johnson
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Miz_D
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Re: I made it to the Neuro visit, yeah!
« Reply #6 on: Oct 22nd, 2007, 6:08am » |
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Thanks all...starting to see some changes finally. Not PF yet but definitely moving in the right direction, just trying to catch up on such much needed rest right now. Not really seeing the results I've experinced before from the Pred taper but am hoping the Topomax will be more of an influence this time around as obviously the verap for some reason aint liking me much anymore...
Totally correct about the Topomax, remembered it from before..upped it myself and starting to see some results. Sure hope the magnesium 'loosens' up the effects of taking high dose verap for the last 6 years... 
Didn't have a very good experience with the Olanzapine...10 mg didn't cut it although got good and dizzy...another 10 mg and I was out like a light for 12 hours which would have been great except took me almost 24 hours before I stopped feelin dizzy...glad I didn't have to go out in public! But, will try it again in case that was a fluke...
Really, really grateful fro everyone here and always wishing everyone PFDAN!
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