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Topic: Topamax (Read 467 times) |
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duck_soup
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I'm hopefully getting close to the end of a 6-8 week cycle. My doc and me tried to go it with just abortives; O2 and imitrex shots, then prednisone when things got out of hand. I got into a vicous cycle where I was getting 4-5 ha/day and the O2 wasn't touching them. The prednisone was making me sick and I was a real mess. I got an emergency appointment with my neuro and he wanted to start me on topamax. He gave me a sample bottle of capsules for infants that you're supposed to break open and sprinkle on their food. So it can't be too high a dose. He really didn't tell me much about it other than that.
My questions are:
1. what is it and what's it do
2. has anyone had much luck with it
3. what are the side effects
4. does it help / hinder getting to the end of the cycle
Thanks in advance for the help.
Rick
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forgetfulnot
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Rick, try the search engine. Several recient posts on topamax / aka dopamax
Lee
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| « Last Edit: Feb 20th, 2004, 1:04am by forgetful » |
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Tiannia
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Re: Topamax
« Reply #2 on: Feb 20th, 2004, 12:57pm » |
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My questions are:
1. what is it and what's it do - Topomax is an anti seazure med that has helped some people with their HA. Clusterheads take a lower dose then people who are taking it for seizures. People say that the best way to get by the side effects is to start with a very small dose and work your way up.
2. has anyone had much luck with it - I think that it might have accutaly helped me if I could have dealt with the side effects. There are some people (Blake for example) who consider Topomax a lifesaver. The Beast hits each of us different so no one med helps us all.
3. what are the side effects - Weight loss- I think this one is because you dont feel like eating. For me I had a violent reaction which is not common for everyone. I had stomach cramps, continuous nausea, dizzyness. Most people get ditzy, like they cant remember things as well as they used to. There are other side effects as well but those are the prominant ones.
4. does it help / hinder getting to the end of the cycle As I said there are some who consider it a life saver. But each person gets different releif from it
Tiannia
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Edski_1
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Re: Topamax
« Reply #3 on: Feb 20th, 2004, 4:30pm » |
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I've had good luck with it, others have not.
Check out the "Revised Topamax Report" thread...there are a few others.
The sprinkle caps are not necessarily a lower dosage...just meant to disperse throughout food for easier ingestion than a pill I guess. This is the first med I've heard of it, but I suppose it's not the only one...
So far, after about 7 weeks, I can't say that it's shortening my cycle...but it has reduced my HA's to almost negligible level. But I still get a varying degree of shadows, so I suspect the cycle is still lurking and if I stopped the med the CH's would return...
The dopeyness side effect eventually went away. 
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toader
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Re: Topamax
« Reply #4 on: Feb 23rd, 2004, 8:52pm » |
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erm, lets see...
I started my dopeymax same time as verapamil so honestly its hard for me to separate the benefits of the two drugs
I can, however, tell you the side effects..
1) makes you forgot stuff (like your password or what your were supposed to buy at the store)
2) timesome your sulurr yer wrds n you look like not so intlln gent (hiccup)
3) Garfield is funny as shit. No, really, the man is a genius. I highly recommend buying the entire series of books and reading them to entertain yourself and forget about clusterheadaches. You will laugh out loud at the dinner table. Pay no mind to your family who may or may not look at you with mild amusement.
4) Thirst. The godawful thirst .... must have water ... can't get enough ..... W A T E R !!!!!
5) Hmmmm.. I had a number five in mind but I forot it already. See if you don't make lists ahead of time, you foget. Oh well! You also care less, which makes you more fun to be around. Enjoy!
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rbmb
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Re: Topamax
« Reply #5 on: Feb 24th, 2004, 12:50pm » |
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Topomax makes me so forgetfull that I tell myself "I've got to write myself a list of things to do so I won't forget" and then I forget to write the list.......my short-term memory hasn't improved as I've gotten older and taking Topomax has made it much worse.
Rich
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dodie
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Re: Topamax
« Reply #6 on: Feb 24th, 2004, 1:38pm » |
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hey man,
Life on topomax is good so far, Ive been on it for about a week. My prednisone taper ended 4 days ago and no sign of the beast returning. Im so happy 
and HA free.......
side effects are minimal forgetfullness, tingles in toes and fingers, very mild mood swings that dont last very long. water, water , water, water, peeing 3 times in the night. its all worth being pain free!!!!!!!
How sweet it is to have a life again!
read up do your homework
be willing to suffer kidney stones if you have a history,
look into gravel root herb to keep your system free of stones. ( just a little holistic advice )
dodie [color=Red][/color]
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dodiehowe
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toader
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Re: Topamax
« Reply #7 on: Feb 24th, 2004, 1:53pm » |
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oh yeah, I remember now. . .
5) The tingles. I hate the tingles.
Now, I can't say "it's worth being pain free" like some cuz I'm not pain free. Better than I was. But not even close to pain free.
I'm going to see the doc next week and ask to be taken off the drug. As much as I just love all the endearing qualities, I'm growing weary of all the side effects.
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MarkV2
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Re: Topamax
« Reply #8 on: Feb 24th, 2004, 4:50pm » |
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I just got through with lithotripsy surgery to remove a [topamax] kidney stone. It was my first and hopefully last. That was not a fun experience.
Been on topamax for a year. I'm on a topamax downward taper to get off it now and experiencing motor control problems - dizziness (like the spins), nausea and some forgetfulness. Neuro has me going down 25 mgs every 5 days.
At this rate, not sure if I will be able to drive in a couple more days.
Mark
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duck_soup
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Re: Topamax
« Reply #9 on: Mar 1st, 2004, 10:39am » |
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Thanks for all the advice.
It looks like I'm going to pass on it.
I think I'll try the verapamil again when
I'm done with this pred taper. I'm getting
tired of this cycle which is a very good sign
for me. I'm always gung-ho when they start,
then get sick and tired at the end. Maybe I
should start out sick and tired.
I don't think I'll use the prednisone again. It
only seems to mask things while I'm on the high
dose, then as I taper off, it comes back with a
vengence. I'm sitting right at 8 weeks since I remember
having a headache after a couple of drinks one night.
That's usually the extent of my cycle, but it hasn't quite
kicked just yet. That's why I'm thinking of taking what's
left in an old bottle of verap (about 10 pills, 180 mg),
calming things down a bit, then hopefully riding off into
the sunset. The O2 has started to work again which for
me is a sign that things are coming down. I'm tired of
shots, tired of not being able to concentrate, and tired
of being tired. I'm sure everyone here can relate.
Thanks again,
Rick
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