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Topic: The Respite has ended (Read 237 times) |
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roy21302
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The Respite has ended
« on: Sep 25th, 2006, 12:50pm » |
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Hi Folks,
Some of you may know I been trying topamax, since the 2nd August, well I started low on only 12.5mg am and pm and gradually built up to 50mg am 50mg pm. I thought they were doing me some good as I seemed to be getting some PF time with them, then a couple of weeks ago I started to get a rash real bad, now that is really bad, Doc reckons the Topo is causing it, and to cap it all the CH is back BIG time, I been getting hit 3-4 time a night the last few nights and all at kip 9-10. A couple of time even the Imigran inj have not touched it, I am not getting any sleep, thus feel like crap, and don't have very high opinion of dopeymax, suppose it will take weeks to get off the damn stuff now. Make you wonder if it is worth pissing about with all these different pills. Over the last 30 years I must have tried everything shown over on the left, the only thing that usually gets rid of the pain for me is the IMi inj, ice packs and sitting it out. I hate this bloody thing sorry to go on Cheers Roy  PS Any one got a gun???ha ha
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: The Respite has ended
« Reply #1 on: Sep 25th, 2006, 1:04pm » |
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very sorry to hear this roy..i know you had hopes with topmax...thinking of you buddy.
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today is a gift.....thats why it is called the
present.
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Sean_C
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Re: The Respite has ended
« Reply #2 on: Sep 25th, 2006, 1:10pm » |
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Hang tough Roy, always remember just because a preventative didn't work the first ime, doesn't mean it won't work the next. I'm hoping you get some relief soon. Do you use o2?
Keep the faith,
Sean...............................
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TxBasslady
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Re: The Respite has ended
« Reply #3 on: Sep 25th, 2006, 2:56pm » |
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Lots of pf vibes for you, Roy. 
I know it's tough....but hang in there and for sure better days are coming, sweetie.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Richr8
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It's all about today...
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Re: The Respite has ended
« Reply #4 on: Sep 25th, 2006, 3:10pm » |
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on Sep 25th, 2006, 12:50pm, roy21302 wrote:| I am not getting any sleep, thus feel like crap |
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This is a big problem for me as well. Last year the folks on this site intoduced me to Melatonin and it helped me get a little more sleep. I would take 6-9 mg before bed and was able to get between 4-6 hours sleep. You might give that a shot. Also, I would like to repeat, if you do not have Oxygen, get it! You atleast need to know if it works for you because it provides lots of relief for many of us.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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ShariRae
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Re: The Respite has ended
« Reply #5 on: Sep 25th, 2006, 10:16pm » |
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Have you tired Verapamil? Works for a lot of folks 
Much Love
Shari
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Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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alchemy
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get out of my head
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Re: The Respite has ended
« Reply #6 on: Sep 25th, 2006, 10:17pm » |
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Hang tough Roy there's alot of help here for you
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Fredmyyster
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SK8 2 Live !
 
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Re: The Respite has ended
« Reply #7 on: Sep 25th, 2006, 10:31pm » |
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Roy, Fioricet worked for me..... give it a try, what the hell.... good luck bro ....
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Have pump will travel...
Will work for Pools.
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roy21302
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Re: The Respite has ended
« Reply #8 on: Sep 26th, 2006, 9:44am » |
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Thanks for your replies, I already take verapamil and O2 does not work for me, I have tried it a couple of times now I wish it did. I still feel dreadful, got the most awful shadow today had 4 hits last night, but only about 4 or 5's so see how it goes now Cheers Roy
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Charlie
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Re: The Respite has ended
« Reply #9 on: Sep 26th, 2006, 3:49pm » |
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Damn. Sorry you're having such a time. Topamax is a weird thing. Used it for my seizures for awhile.
That rash is a sign that it's time to get some help. Big side-effect warning, they say. I think your doc is right.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: The Respite has ended
« Reply #10 on: Sep 26th, 2006, 4:02pm » |
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Hi Roy, when are you back to see Dr Bahra? We need to get you some relief hon. How is Shirley doing? She must be devastated for you too. You know where I am, I'm only at the end of a phone and I'll come and see you if you like There! If that don't scare you silly nothing will! 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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roy21302
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Re: The Respite has ended
« Reply #11 on: Sep 27th, 2006, 11:53am » |
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Thanks for the replies, Charle I sent you a message hope you don't mind, Helen I'll be in touch, I am waiting for Dr Bahra to phone me back I spoke to some one at the HA group at QS this morning. Things seem a whisper easier today shadow only slight Cheers Roy
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rickyshot
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ouch
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Re: The Respite has ended
« Reply #12 on: Sep 27th, 2006, 6:53pm » |
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Sorry to hear it Roy. I find that this thing gets used to meds and you have to cycle meds. I am immune to all meds except DHE, prednisone and of course busting. Red bulls help my shadows. Have you tried that.
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