Author Topic: Topamax anyone?  (Read 4872 times)

Nannybee

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Topamax anyone?
« on: August 13, 2013, 04:33:46 pm »
I had my first visit with Neurology today for headaches. Very good experience, which is refreshing after my disastrously disappointing visit at Penn neurotology. After a thorough exam and discussion of the risks/potential benefits we decided to trial Topamax.

I'm aware of the potential nasty side effects, but willing to give it a try to prevent these headaches.

Anyone have experience with Topamax?

Thanks.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

Imcamodchick88

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Re: Topamax anyone?
« Reply #1 on: August 15, 2013, 05:19:22 pm »
Hi nannybee,

I'm on topomax. My only side effect is that I can't drink sodas any more, they taste horrible. But since starting this med I went from 10-15 migraines a month to 3-4, which are manageable through midrin. I also lost 30 lbs.

My stepmom is also on it and she swears by it, as is my step-aunt. I guess it's our family drug, then again ours is for migraines.

Good luck!
Kristin
2.8-cm AN removed by translab on 12/23/11 at UTSW
Dr. Issacson and Dr. Mickey

lifeisgood

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Re: Topamax anyone?
« Reply #2 on: September 28, 2013, 10:51:02 am »
Tried topomax.
Didn't help with facial pain but I got really skinny. (size 2) Currently a 4/6.
The only thing that helps my pain is Imitrex.  I also went gluten free and that reduced the headaches/facial aches.
Good luck!
I have been on many Effexor, Neurontin, etc etc and didn't find relief.

Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

arizonajack

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Re: Topamax anyone?
« Reply #3 on: September 28, 2013, 12:35:50 pm »
Tried topomax.
Didn't help with facial pain but I got really skinny. 


I'm on topomax.  I also lost 30 lbs.


I have to lose another 50 lbs. Send me some of that stuff.  ;) ;D ::)
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Captain Deb

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Re: Topamax anyone?
« Reply #4 on: October 07, 2013, 09:32:24 am »
I was on Topamax for 3 years--lost 25 lbs and helped headaches somewhat, but it didn't touch the relief I got from Botox injections!  I found the Topomax very difficult to titrate onto--kept triggering emotional stuff and episodes of depressions.  I had to start with the sprinkles--12 mg into applesauce at first and worked my way up to 300 mg a day.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW