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Topic: Topamax and Prednisone (Read 357 times) |
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redshoes
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Topamax and Prednisone
« on: Oct 9th, 2004, 4:03pm » |
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For 7 years I have had Cronic Clusters Everyday non stop..I just found a DR. who put me on 20mg/day of Prednisone and everyotherday 30mg along with 50mg of Topamax at bedtime...for a month now I am cluster free...I have taken everything known to man like in the PIE move,,,to stop these f///ing things and this seems to be working,, even through all the stress of all the distruction here in Florida I have had no problems.....hope it will work for you.......
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Ronny
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Re: Topamax and Prednisone
« Reply #1 on: Oct 9th, 2004, 4:14pm » |
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Hi there,
I'm glad you've found something that works. 
Ronny.
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LeLimey
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Re: Topamax and Prednisone
« Reply #2 on: Oct 9th, 2004, 4:26pm » |
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How long have you been on the prednisone and how long are you due to be on it?
Just asking as I was taking the equivalent, prednisolone at 30mg a day for 6 months (for a different condition) and I couldn't stay on it any longer as I'd already been on it too long! It can have some scary side effects and long term effects too. I had some really bizarre hallucinations for the first couple of weeks on it... saved watching TV on the upside though!
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redshoes
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Re: Topamax and Prednisone
« Reply #3 on: Oct 12th, 2004, 4:35pm » |
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I just saw my Dr. today and we talked about the Prednisone...He wants me to continue until I am 3 months without the clusters,,after that he will start to take me down from it.,,,I know what you are talking about as far as the hallucinations,,,that happens to me too...my dreams are vivid as well but I will take those over pain any day of the week....He told me of a guy he is seeing that has had clusters for more than 20 years,,he put him on Topamax and he has been pain free now for 4 months,,,,hmmmmm....Rock On..
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LeLimey
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Re: Topamax and Prednisone
« Reply #4 on: Oct 12th, 2004, 6:00pm » |
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I hope it works for you and doesn't take too long! Good luck and if you get any real lu-lu's of hallucinations we'll swap stories!!
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Gator
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Re: Topamax and Prednisone
« Reply #5 on: Oct 13th, 2004, 4:54am » |
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After reading what some here have gone through/are going through because of prednisone, (Dave Edmond for one) I'd be concerned about using it on a long term basis.
Pred is usually used as a transitional medication to hold back the pain while a preventative (like topamax, verapamil, depakote, etc) has time to take effect and then the pred is tapered off. It should not be used on an ongoing basis as a preventative.
I'm surprised someone hasn't already voiced a concern.
Gator
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vig
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Re: Topamax and Prednisone
« Reply #6 on: Oct 13th, 2004, 10:40am » |
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the doc must be sniffing glue if you're taking Prednisone that long.
my $.02
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Woobie
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Re: Topamax and Prednisone
« Reply #7 on: Oct 13th, 2004, 3:52pm » |
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i know people who've taken prednisone for years at a time.. every single day.
not for clusters.. but still....... it can be done - and is all the time.
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Prense
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Re: Topamax and Prednisone
« Reply #8 on: Oct 13th, 2004, 5:12pm » |
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on Oct 13th, 2004, 3:52pm, Woobie wrote:i know people who've taken prednisone for years at a time.. every single day.
not for clusters.. but still....... it can be done - and is all the time.
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It "can" be done, but there is a huge risk for serious consequences. Many folks on pred for long term use already have serious things going on. Risk management... It's like playing russian roulette with a semi-auto. Sure, there's a chance the round will be a dud.
Chris
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redshoes
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Re: Topamax and Prednisone
« Reply #9 on: Oct 14th, 2004, 2:20pm » |
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Well,,,after a shit load of Dr's and all of the traditional treatments including a mis diagnosis of trigeminal nyralgia which lead to a microvascular decompression operation,,,Staying on the Pred for this period of time does not scare me...after I am not slamming my head for a solid three months then we will start the ramping down from the Pred....
I think we all must keep an open mind to whatever works,, short of splitting ones head open with a hammer....
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karma
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Re: Topamax and Prednisone
« Reply #10 on: Oct 14th, 2004, 4:11pm » |
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Redshoes,
You've found the right place to get all the right info on CH. Prednisone, on a long term basis can have some seroius consequences. Yes belive it or not more serious than CH.
The pred by itself is no gurantee that you will remain PF after youv'e tapered off. A combination of Pred (short term) and a preventative like verapamil (longer term) have had a lot of success. Then there is the clusterbusters treatment which has had allot of success in longterm relief. Oxygen is also very successful.
You've acknowledged that the docs have made a mess of your diagnosis up till now. Maybe you've already tried all these things, I don't know but please keep an open mind and at least read whats available on this site. Nobody is judging you or your method afterall we all have the same goal
Good Luck
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