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Topic: Here I go again! (Read 198 times) |
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MarkHW
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Here I go again!
« on: Jun 16th, 2002, 6:56pm » |
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Well, here I go again....
I was in cycle for a couple months... my Dr. put me on Prednasone and It stopped the cycle until I started to go off... as I tapered the clusters started again.
So he left me off for a week... I had 2 - 3 a day and then he put me back on prednasone.
I was on 10 days at 40 mg and now I have been on 30 mg for about 7 days....
2 days ago they started again.... Right now it's about 1 a day and the kip rating is only about a 7, but the eye twitching has started and they are starting to build.
I really need to find a med that will keep these away - I'm chronic and only go about a week (typically) between cycles). I'm also a single Father that has full custody of my two sons.
I tried verapamil and it didn't help!
Please pray that my doctor will figure out what to use next. I have never tried some of the newer anti-convulsants, lithium, or large quantities of neruonton.
Thanks! Mark
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The clusterhead formerly known as williamsmh.
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forgetfulnot
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Most Dr,s start you out at 120-240 mg of verap, wasn't enough for me but 480 along with lithobid has helped. don't forget the O2 and Imetrix to tide you by. After twenty years most if the time I sleep all night.
Lee
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simpson1974
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Re: Here I go again!
« Reply #2 on: Jun 17th, 2002, 8:43am » |
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Get yourself plenty of Imitrex injections to help you through, but you could try neurontin or depakote as a preventative. I am taking Depakote right now, and it actually seems to be working for me. Increased verapamil may do the trick, as well... higher dosage, that is. It takes it a bit to get into your system. Just keep prodding... half the battle is all the trial and error you have to do to find something that works!
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NotH20
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Re: Here I go again!
« Reply #3 on: Jun 17th, 2002, 11:10am » |
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Mark - sorry you are getting hit again!  You may want to try Topomax or Keppra. Have you tried DHE yet? That might be beneficial for you.
Keep the faith - I'll keep you in my prayers.
Mia
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MarkHW
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Re: Here I go again!
« Reply #4 on: Jun 17th, 2002, 3:42pm » |
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Thanks everyone...
Called the Neuro and got a voice mail back.
They are keeping me at 30 mg of Prednasone for another 10 days to try to get me through to end of cycle.
I have the first twinges of another one coming now.... will take the imitrex if it hits (within about 5 minutes, probably).
If it continues or they get worse I'm supposed to call back. I mentioned neuronton, Keppra, etc. and .... also higher dose of verapamil with one of the above.
The nurse said he wants to try this first.
One a day and not as severe is tolerable as long as I have imitrex....... If they get worse I'm going to insist on trying something new!
Mark
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The clusterhead formerly known as williamsmh.
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johnrudd
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Re: Here I go again!
« Reply #5 on: Jun 17th, 2002, 4:44pm » |
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You stated in your first post that you'd tried verapamil, but didn't indicate if it was SR (slow release) or R (regular). If it was verapamil-R, then disregard. If not read on.
Until I learned better, I was on 480 mg (120 x4) of SR for 10 weeks with zero effect. After reading here of the difference in verapamil-R, I began 120X6 and in less than three weeks the cycle and HA's are on hold.
If you haven't tried the regular release, try it. For me it was a case of night versus day.
Best of luck-John
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johnrudd
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Re: Here I go again!
« Reply #6 on: Jun 17th, 2002, 4:46pm » |
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You stated in your first post that you'd tried verapamil, but didn't indicate if it was SR (slow release) or R (regular). If it was verapamil-R, then disregard. If not read on.
Until I learned better, I was on 480 mg (120 x4) of SR for 10 weeks with zero effect. After reading here of the difference in verapamil-R, I began 120X6 and in less than three weeks the cycle and HA's are on hold.
If you haven't tried the regular release, try it. For me it was a case of night versus day.
Best of luck-John
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MarkHW
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Re: Here I go again!
« Reply #7 on: Jun 18th, 2002, 7:55am » |
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I was originally on the slow release but was switched to the regular verapamil.
But... i was only on 240 mg... so maybe I need more!
I'm hoping the dr. will give me a high dose of verapamil and neuronton...
They still want me to wait on the prednasone and see if I can get through the cycle.....
If I'm still clustering in a few days I'll call back and see what they'll do.
I'm at one cluster a day - kip 7-8. If the pred stops working I'll be havine 2-3 a day at kip 8-10.
Mark
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The clusterhead formerly known as williamsmh.
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