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Topic: I am new to this site... (Read 303 times) |
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Francie
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I am new to this site...
« on: Jul 21st, 2005, 3:01pm » |
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I just wanted to let everyone out there know that I have finally found something that has been working for me for about a year now, thank god! It's called Topamax and although I take lots of it (I take 3 25 mg in the AM and 3 25 mg in the PM), I haven't had a break through in almost 1 year! It's not cheap and it does make you feel very "loopy", it sure beats those killer monsters. I couldn't keep taking so many shots and I was missing so much work, blah blah blah... you know the rest!
After years of suffering and feeling like I was going to DIE or wanted to at least, my neurologist thought we could give this one last try. We started off on a low dose and I was still having break throughs, but once we reached a certain level, I have been free for almost 1 year!
I tried going off of the Topamax because my doctor thought I had passed the "season" of the clusters but after only one month of being off of it, I had a break through, so I had to start back on my medicine. It may not work for everyone but if it can help just one of you, it's worth it!
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vig
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Re: I am new to this site...
« Reply #1 on: Jul 21st, 2005, 3:07pm » |
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Glad to hear you're finding relief.
stick around and read up, there's way better medicines available than 'Dopeymax'
welcome!
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never, Never, NEVER quit. -Winston Churchill
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unsolved1
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Re: I am new to this site...
« Reply #2 on: Jul 21st, 2005, 3:10pm » |
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Glad to hear that the Topamax is working for you. Many clusterheads have tried this drug. I'm sure it has helped some too. Most complain of the side effects. I did Topamax for about 11 months. It didn't help with my clusters and it gave me kidney stones twice.
About 1 in 50 adults taking Topamax have developed kidney stones. They are more common in men and in those who have had them before. They also may be more likely to occur if Diamox (acetazolamide) or Zonegran (zonisamide) is also taken or if the ketogenic diet (a special diet sometimes used to control seizures in children) is followed. Topamax therefore should be used cautiously in people taking Diamox or Zonegran or using the ketogenic diet.
To help prevent kidney stones, drink plenty of water, juice, or other fluids (8 glasses every day for adults). Sharp pains in your side or lower back may signal the onset of a kidney stone. Consult a doctor immediately or go to the emergency room.
Again, glad it's helping you. Be careful !
PF Wishes
Unsolved
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E-Double
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Re: I am new to this site...
« Reply #3 on: Jul 21st, 2005, 3:58pm » |
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Congrats on your relief!!!
I'm still trying to remember my name....I've been off the stuff for nearly 5 months 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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jcmquix
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Re: I am new to this site...
« Reply #4 on: Jul 21st, 2005, 4:06pm » |
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on Jul 21st, 2005, 3:58pm, E-Double wrote:Congrats on your relief!!!
I'm still trying to remember my name....I've been off the stuff for nearly 5 months |
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 I think its Eric....
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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Francie
New Board Newbie
I love YaBB 1G - SP1!
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Re: I am new to this site...
« Reply #5 on: Jul 22nd, 2005, 8:46am » |
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I just read your reply. I'm so sorry that this medicine didn't work for you. I can't even imagine still suffering like that. I am so sorry for you, for all of you. It made me laugh when you said you are still trying to remember your name. That is hysterical! My friends call me "loopy" because they say they can always tell when I am taking this stuff but I really just don't have a choice. It's do or die at this point. I am a single mom raising two small children (11 and 5) and my oldest son is so funny. Sometimes he'll say "it's ok Mom, it's got to be the med's". Anyway, it's nice to know that I'm not crazy and I'm not alone. Thanks for the heads up and keep in touch!
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Jasmyn
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Re: I am new to this site...
« Reply #6 on: Jul 24th, 2005, 4:44am » |
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Good luck Francie.
Listen to these old timers, they are a great bunch with a lot of meds experience. Having to raise 2 kids and being loopy most of the time is surely very difficult.
Here are people that will support you and give you some great advise. Welcome to the group!
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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godsjoy777
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HIS name is above clusters
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Re: I am new to this site...
« Reply #7 on: Jul 24th, 2005, 8:48am » |
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Hi Francie!
Welcome to this wonderful crazy community of clusterheads....Don't worry about what doesn't work for others....If it works for you and you don't mind the side effects....great...PAIN FREE IS GOOD!!!!
I know a couple of folks here who are on Topamax and have no problem putting together complete sentences....as a matter of fact they seem pretty bright to me.... so you go girl!!!!
I was a single Mom for 16 years....Life is difficult enough in that situation....Be blessed....read...read...read.....and learn here!
Blessings,
Karen
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| « Last Edit: Jul 24th, 2005, 8:49am by godsjoy777 » |
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cazman
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if ya dont like it take a walk
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Re: I am new to this site...
« Reply #8 on: Jul 24th, 2005, 12:22pm » |
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good to hear read eveything here theres other ways to fight the beast now ive personalyy been pian free for 3 weeks using lsa
treatments
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| « Last Edit: Jul 24th, 2005, 12:22pm by cazman » |
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bnfreeman
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Re: I am new to this site...
« Reply #9 on: Jul 24th, 2005, 4:42pm » |
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When I first started Topamax it helped me out, six months later the clusters broke through. My doc upped the dose and I lost my brain. I hope it continues to work for you. I am not a single mom but I do know how you feel. My husband was activated to Iraq for 7 months and I had the worst cluster hits ever! At the same time I was trying to take care of our 2 year old.
The past 4 days I have been completely pain free. I havn't been PF since last Sept. Not even for a day. Good Luck to you!
Brandi
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