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jesbri

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Topomax As Preventative
May 4^th, 2009 at 8:02pm

I was wondering if anyone else has been put on Topomax as a preventative and how much you are taking. My doc put me on it in March after I started my cycle in Februrary. At first it seemed to work I had 3 weeks off and then they came out with the generic brand of the med and WHAM, the beast was back and hasn't left for more than a day or two since. My doc has slowly been upping my dose to try and see if we can prevent them. I have a family friend who takes 600 mg of the stuff to stop her migraines...just wasn't sure how effective they were for CH.

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Topomax As Preventative Reply #1 - May 4^th, 2009 at 8:48pm Hi,I've been on Topamax for over three years now 100mg. I take it at night to try and minimize the side effects. It works for me so far,but what works for one might not work for another. All the best in your search for PFD Iddy
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bigmenawa CH.com Junior Offline I Love CH.com! Posts: 47 Boaz, Alabama Gender:	Re: Topomax As Preventative Reply #2 - May 4^th, 2009 at 10:11pm i usually take 75mg at night but sometimes i take 100mg. it seems to work fairly well for me. i have heard of people taking a lot more though.
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chrisw CH.com Old Timer Offline Posts: 315 x0\|turnersville\|NJ,USA Gender:	Re: Topomax As Preventative Reply #3 - May 4^th, 2009 at 10:16pm tried it a few years back, but it did nothing. Maybe i will try again, because the beast morphs back and forth and one thing works one year , but not the next year, so maybe if one thing doesnt work one year it will work another year.
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Balanchine

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Re: Topomax As Preventative
Reply #4 - May 4^th, 2009 at 10:42pm

The Tope was very helpful for me during my last cycle. After a week or so it really knocked down the daily hits so that I rarely needed to pop an Imitrex or even suck down the O2. It did, however, render me a walking zombie. But here in LA I just fit in better.

Good luck to all of you with this weird but (for me) effective preventive.

David

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BarbaraD

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Re: Topomax As Preventative
Reply #5 - May 5^th, 2009 at 8:02am

It's been my miracle prevent since 99. I was on 300mg for several years (I take the whole dose at night). I didn't have any side effects except for a little short term memory loss (but I'm OLD and that's to be expected).

Over the years, I've regulated the dosage and am now on a 100mg dose. During high cycles I have to up it sometimes, but try to stay on 100mg (because of the cost). I haven't tried the gernaric brand, so I can't vouch for that.

I do know the real stuff has kept me sane over the years (and I was a mess and had tried almost everything on the market before we hit on the topamax).

I'd say if the generic doesn't work - go back to the brand name. Sometimes the gereric just doesn't cut it.

Hugs BD Kiss

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jesbri CH.com Junior Offline I love YaBB 1G - SP1! Posts: 49 x0\|Mason\|USA\|\|0\|0\|MI,Michigan Gender:	Re: Topomax As Preventative Reply #6 - May 7^th, 2009 at 7:11am Well I'm up to 100 mg now; 50 at night and 50 in the morning...I go back in a week, if no relief we go up another 25 mgs.
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Topomax As Preventative Reply #7 - May 7^th, 2009 at 8:58am If you began to have side effects (the dopey feelings in the daytime) take the whole dose at night and see if those don't stop. Hugs BD
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jesbri

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Re: Topomax As Preventative
Reply #8 - May 10^th, 2009 at 10:45am

I had a three day hiatus from the beast.....well I was level 2-4 and that was a break for me...but I felt kinda drugged, had facial numbness, my tounge felt like I'd burned it, and I was really shaky from the topamax.................that all ended today when he reared his head this morning....I knew it was too good to be true. All well it was fun p/f while it lasted. Wink

I see the Neuro in a week and will talk about putting the full dose at night. I'm anticipating them uping the dose again. I'm concerned about all the drugs they have me on. I'm now on two anti-depresents..one I've been on a while for anxiety I have and the other is for the CH, now the topamax, then phenergan as an abortive. I looked into the interations of the meds and all of them are in BOLD RED for interacting with each other. I am the type of person who the doctors yell at for not taking the one med I was supposed to take daily and now I'm popping 3 1/2 pills twice a day; and 3 more if the beast is bad.

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Kirk

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Re: Topomax As Preventative
Reply #9 - May 10^th, 2009 at 11:02am

I'm taking the generic Topamax (Topiramate) 100 mg a day. 50 in the morning and 50 at night. I also take Nortryptyline 75 mg. at night. I've been on this dosage for several years now, and its done OK so far. I get some minors stuff, 4 & 5s that O2 takes care of. and the occasional real ass kicker, which the O2 is also good for. My memory isn't as sharp as it was, but I can live with that. All things considered.

Smiley

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JustNotRight

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Re: Topomax As Preventative
Reply #10 - May 10^th, 2009 at 12:25pm

My Neuro suggested Adding Topamax to my medication list...

I am currently on Varapamil 240mg 1 1/2 pills per day Totalling 360 mgs per day, and Imitrex 6mg shots

I would appreciate some feed back as to side affects etc. and is anyone else on this combination ? I haven't said yes yet... would like to know more obviously before hand. Tongue

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jesbri CH.com Junior Offline I love YaBB 1G - SP1! Posts: 49 x0\|Mason\|USA\|\|0\|0\|MI,Michigan Gender:	Re: Topomax As Preventative Reply #11 - May 10^th, 2009 at 7:51pm The biggest side effect that is worrying me is the tremors. Since I was upped this last time the tremors have increased. From everything I'm reading they will go away as my body adjusts (or so I hope )
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TedtheBear

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Re: Topomax As Preventative
Reply #12 - May 10^th, 2009 at 10:15pm

JustNotRight wrote on May 10^th, 2009 at 12:25pm:

My Neuro suggested Adding Topamax to my medication list...

I am currently on Varapamil 240mg 1 1/2 pills per day Totalling 360 mgs per day, and Imitrex 6mg shots

I would appreciate some feed back as to side affects etc. and is anyone else on this combination ? I haven't said yes yet... would like to know more obviously before hand. Tongue

I was on a cocktail consisting of: Elavil, Verapamil, Topomax, and one other drug that just doesn't come to mind. Anyway, the meds nearly killed me!! Elavil raised my blood pressure, Verapamil had my heart rythm going crazy - besides lowering my blood pressure (not balancing it to the Elavil), and the Topomax had me so stupid that it was ridiculous. Besides, Topomax WILL give you kidney stones over time - not good for someone who only has one kidney. I was handed this stuff w/o ever having an EKG Shocked

. I fired this Neuro, got off the meds, and saw a Neuro who was a "Headache Specialist", she was the one that put me on O2.
I want to make it clear that I'm not saying don't take meds, but make sure to do your homework and find out EVERYTHING about the med you're taking, and don't just go by the handout that they give you at the pharmacy (e.g. the handout for the Topomax didn't mention the risk of getting kidney stones)
Talk these thing through with the Neruo because many times drug manufacturers push their drugs and doctors simply don't take the time to fully research them. That's where you come into play.
Wish you the very best,
Ted

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« Last Edit: May 10^th, 2009 at 10:20pm by TedtheBear »

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Topomax As Preventative Reply #13 - May 11^th, 2009 at 8:51am Wow Thanks for the info. Yes I have gotten into the habit of researching a medication before I say yay or nay on it, have been burned before. I'm thinking no... I have already had kidney failure once before and don't need the added kidney issues or stones. Thanks!!
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jesbri

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Re: Topomax As Preventative
Reply #14 - May 11^th, 2009 at 6:32pm

I made a last minute appt with the doc today to get off of Topamax due to the tremors. After he upped my dose last Wednesday the tremors got continuously worse, until this morning I could not even hold my coffee cup without spilling it. I'm now tapering back off it. I'd rather have the headaches than deal with those side effects.

Keeping my fingers crossed and we'll see what the neuro says next week.

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jesbri

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Re: Topomax As Preventative
Reply #15 - May 13^th, 2009 at 7:38pm

Topamax is very bad for me. It did help the CH, it made my days a level 3-4 and it stayed there the majority of the time. BUT...only about 11% of people have the problem with tremors and I am one of those 11%. Since Monday I have been tapering off, I'm down to 75mg and have to stay at that until next Monday. The tremors are improving, but now I have the memory problems, confusion, pins and needles, and still the tremors....and the CH is back full force. I have never been a big pill/drug person anyway, and now I am even more skittish to drugs. I feel so miserable now and just want to get back to "normal" or whatever that is. Lips Sealed

For those that this med has worked for I'm envious, it worked great for my headache, but I couldn't handle the side effects. My doc laughed and shook his head. The anti-depressent he put me on to make me sleep at night gives me insomnia....go figure, my head's messed up...LOL Cheesy

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