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   HELLO TO ALL MY NEW FRIENDS!!!!!!!!!!!!!
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mrataxic
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  mike_betchel  
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HELLO TO ALL MY NEW FRIENDS!!!!!!!!!!!!!
« on: Apr 15th, 2004, 9:04pm »
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Hello all
 
    Actually I found this site A LONG time ago an haven't been back.............Oh well,,,,,,,,im back now, and plus, I gotta find some relief or support or sumtin........... Anywho,,,,,,,,,,ill quit babblin,lol.......My names Mike,I just turned 32, and I've been dealing with these Clusters foreveer it seems........ Actually, I just made a trip to the ER a couple days ago. This has been my uumtenth visit.......... All they do is load me up on drugs............Lets se,,,,,,,,they give me demeral, visseral, prednozone,viccodine,etc........... And at home i take varapamill.  I ahve tried everythinng! I am thinkin i am boarder line chronic but am not sure.......... It seems like they NEVER go away, and when it get so bad I can't stand it,,,,,,,,,,well lets not go there,lolol...........And it doesn'tt help that i sleep worth crap and get NO REM  sleep(witch i read might be associated with clusters).  I also have Ataxia, witch I think may be connected...Anyone kno? Anyway, Hope to hear from you.
 
  Mike
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BobG
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Re: HELLO TO ALL MY NEW FRIENDS!!!!!!!!!!!!!
« Reply #1 on: Apr 15th, 2004, 9:34pm »
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Welcome to the board Mike. I had never heard of Ataxia before so I had to look it up. Dang, hate the sound of that disease. Hope you're doing ok.
 
It sounds like Ataxia is caused by a nerve failure and affects the musle coordination. Is that correct? A connection with clusters? I have no idea.  
 
Have you tried oxygen as a cluster abortive?  
 
There has been a lot of talk here about melatoin to help get through the night.
Many are on verapamil and some at rather high doses. How much are you on? And some folks use lithium along with the verapamil.
 
Right now I wish you some pain free time to push the buttons on the left side of the screen and read, read, read.
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Re: HELLO TO ALL MY NEW FRIENDS!!!!!!!!!!!!!
« Reply #2 on: Apr 15th, 2004, 9:54pm »
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Hi Mike,
 
Welcome to the board.
 
Sorry you're having a rough go.
 
The Melatonin is great to take before bed.  There is a thread on the board about it.  I am episodic, and was pf for 197 days after going on a Prednisone taper.  I started having a few ha's.....the worst about a 7 on the kip scale.  All the others I have had were painful enough to wake me, but I was able to handle them ok.  I started taking the melatonin before bed, and have had no more ha's.  It's cheap, and you don't need a rx for it.
 
It comes in 1mg, 3mg, and higher.  I have the 3 mg, and did increase to adding half of another 3mg tablet and it has been great.  The first few days I took it, I slept several hours longer than usual, but have had no problems with feeling drugged or groggy.  
 
You might give it a try.
 
PF vibes,
 
Jean
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