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Topic: Zonegran-Who has tried it....etc? (Read 441 times) |
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godsjoy777
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Zonegran-Who has tried it....etc?
« on: Oct 16th, 2004, 7:36pm » |
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I've been taking Zonegran for a preventative since the end of my last cycle.....I've recently started a new cycle.....which seems to be a mich milder than usual one......hopeing so anyway.......Haven't had a killer CH at all since the cycle seemed to start about a month ago.....just have to use some oxygen about every other night....but that's all.....
Other than having a bit of trouble with finding the words I want.....I feel pretty good.....
Any and all comments welcome.....Boy does that leave me wide open??? 
Karen
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Renee
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Re: Zonegran-Who has tried it....etc?
« Reply #1 on: Oct 17th, 2004, 12:38am » |
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Hiya Karen,
Zonegran is my prevent. I was on 100mg for about 6 months and recently bumped to 200mg daily, after inpatient DHE treatment. I have basically no side effects from the Zonegran and, now that I've had the DHE treatments and Zonegran increase to 200mg, o2 is now working for me for any breakthroughs thus I've had no need for any abortives. What breakthroughs I get are shorter in length and lower pain level.
I've been doing better the past two weeks than I have in years. I'm chronic.
I take it at bedtime.
p.m. me if you have any specific questions.
good luck,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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godsjoy777
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Re: Zonegran-Who has tried it....etc?
« Reply #2 on: Oct 17th, 2004, 10:11am » |
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Thanks Renee,
Encouraging........I feel pretty great about Zonegran so far.....I actually fall back asleep sometimes before I get a chance to go for the O2.......
Anyone else????? 
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mynm156
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Re: Zonegran-Who has tried it....etc?
« Reply #3 on: Oct 19th, 2004, 11:47pm » |
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Hi
I hope that it continues to help however be warned Zonegran Gave me Kidney stones 5 of them that had to be removed and dude they dont cut you to get them!!!
http://www.fda.gov/cder/consumerinfo/druginfo/zonegran.htm
Good Luck and Good Vibes
MYNM156
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Renee
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Re: Zonegran-Who has tried it....etc?
« Reply #4 on: Oct 20th, 2004, 6:26am » |
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Thanks MYNM156! Yes, Zonegran does have it's potential side effects, etc. and kidney stones is one of them. Thus, lots of water intake with Zonegran is important!
What dose were you at when you had the kidney stones and how long were you on that dose?
So sorry you had to endure the rocks! 
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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mynm156
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Re: Zonegran-Who has tried it....etc?
« Reply #5 on: Oct 20th, 2004, 12:21pm » |
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I scored Five little gems, I was on 400 mg at the time of the stones. I was there for about two and a half months and was ramped up to that after a month and a half.
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godsjoy777
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Re: Zonegran-Who has tried it....etc?
« Reply #6 on: Oct 20th, 2004, 11:23pm » |
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I've been on it now for nearly a year at 200 mgs and no stones....I am very careful anyway about my water intake.....I just jumped to 250 mgs a day and still ok.....actually have fallen back asleep most nights before I could get to the O2.....I wake up with cluster comming on and before I know it I've fallen back asleep.....Miracle of miracles as far as I'm concerned.....The best that I have ever had......So....Praise God for Zonegran.....
Blessings,
Karen
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Lizzie2
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Re: Zonegran-Who has tried it....etc?
« Reply #7 on: Oct 21st, 2004, 4:32pm » |
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That's awesome. Zonegran is supposedly "topamax without the SE's". I didn't tolerate Zonegran long enough to stay on it. I was taking 100mg every other day, and I was throwing up all the time. Had to ditch that one! But I did lose 9 pounds in 2 weeks!
However, subsequent doses of prednisone (before I was forbidden to take pred ever again!) sure killed that weight loss!!
Glad it works for you 
Lizzie
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Renee
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Re: Zonegran-Who has tried it....etc?
« Reply #8 on: Oct 21st, 2004, 10:04pm » |
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200mg Zonegran for me and I think it is a blessing as well. I couldn't handle dopeymax because of it's side effects.
I still wake at 0430ish pf and go ahead and get up immediately. I have found if I lie there and allow myself to fall back asleep that I will wake later with shadows. Instead, I can get up and stir around for awhile and then come back to bed for a nap in a couple of hours (naps only on weekends). Actually BarbD taught me this "get your butt out of bed the first time you wake up or else you'll get hit when you wake up later" theory and it works for me!!!
renee
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godsjoy777
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Re: Zonegran-Who has tried it....etc?
« Reply #9 on: Oct 24th, 2004, 7:13pm » |
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The beast is upping his ante and the night time clusters are coming harder with a vengeance....I suck oxygen and have to pop a Maxalt in order for it to go and stay away the rest of the night.....I'm mid-cycle as far as I know....so I'm believing the Zonegran is still somehow keeping it down some.....but still a bit freaked and exhausted from the nighttime attacks again.
Blessings,
Karen
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mynm156
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Re: Zonegran-Who has tried it....etc?
« Reply #10 on: Oct 30th, 2004, 12:26pm » |
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I noticed the same thing. While my shadows were less intense. My Attacks were MASSIVE!! I thought I had REALLY experenced PAIN before. They were off my previously known scale. I have thought durring an attack many times God Why dont I just DIE. Never intending any such thing. Then this BEAST Cranked it up and then I knew how someone might go from a thought like that to an attaction.
Let There Be Pain Free Days Ahead For Us ALL,
Your Brother in Pain
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godsjoy777
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Re: Zonegran-Who has tried it....etc?
« Reply #11 on: Oct 30th, 2004, 7:35pm » |
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Well.....I don't think my Clusters are any different as long as I have oxygen and Maxalt at my bedside....I make it through the night.....Zonegran did seem to keep it on a lower scale for the first few weeks....we shall see shat happens throughout this cycle.....I'm just now starting meletonin as well....Made the mistake of taking 10 mgs before taking a bath before bed......oops....I fell asleep in hte tub and had a really hard time getting out....From now on I take in in bed ready to close my eyes.... 
blessings from Texas,
Karen
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Renee
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Re: Zonegran-Who has tried it....etc?
« Reply #12 on: Oct 30th, 2004, 11:54pm » |
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I noticed my shadows were less but the hits were more intense the last 4 months than anything I've ever experienced in my 8 chronic years. However, after going inpatient for DHE, my ch's are now shorter in length and fewer. I still believe the Zonegran is better than where I was before I started the Zonegran as the all day shadows are pretty much a thing of the past now.
many pf times wished upon you,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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