Status
Not open for further replies.

EllaForgotten

New member
Joined
Sep 3, 2016
Messages
8
Reason
DX FIBRO
Diagnosis
05/2015
Country
USA
State
Alabama
So, I was looking around the web for options to talk to my doctor(s) about with regards to fibromyalgia and ran across a link for Topamax. I was on Topamax over a year ago for neuropathy, and... it has just occurred to me that the pain began to get worse and worse AFTER I stopped taking it. This is a connection I made just prior to making this post, and I'm now excited about calling my doctor to see if I can go back on it again!

I guess it doesn't work for everyone, like any other Rx, but... I think I'm going to ask my dr to let me give it another try because the timeline of meds stopped vs onset of pain again may be an indication of what was actually helping.

Also... Topamax is used off-label for weight loss, so there's not a weight gain component to this drug.

MY experience with Topamax and side effects:

Mild stupidity. lol Okay, it's kind of funny but not. It made me lose my train of thought at times, or I'd forget a word, etc. Topamax is also called "Stupidmax" for that reason. But if pro outweighs cons.. it's worth it, and getting rid of pain, or most of the pain is worth it to me.

Another side effect I have to mention: I was an idiot, plain and simple, and didn't take my doctor's or manufacturer's advice!! Manufacturer says to DRINK A LOT OF WATER every day to keep the kidneys clear to avoid kidney stones. And guess what? I didn't. I got lazy and take FULL responsibility for my doing that. And, at least in my situation, it took over a year to build up a kidney stone. I wouldn't wish that on anyone as it feels like giving birth. No joke. If you try this medication DRINK LOTS OF WATER EACH DAY!

Changes the taste of certain foods: mostly soft drinks (bad for us anyway) and sweets. This is the part where people often lose weight on this Rx, because it makes a LOT of the bad/fattening foods taste horrible (sodas, chocolate, other sweets). It honestly didn't change the way good, healthy food tastes though.

Here's the good part: I wasn't NEARLY as painful as I am now, and I could still cook, clean, stand up to shower, do my hair, put on makeup, drive, go shopping, WORK, and enjoy LIFE!

I'm praying, truly praying that Topamax will help me again and am definitely talking to my doctor about trying it again next week.

Wish me luck, and I'll definitely keep you guys posted as to if it helps with the pain, etc.!!

Pray for me that this works...

Here's a site that has patient stories. Not all are good, but many are. Which is why I gave my own story/experience.

https://www.drugs.com/comments/topiramate/for-fibromyalgia.html
 
Last edited:

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
I'm a huge believer in prayer. I'd be happy to pray for you. Remember God still heals to this day. Waiting is the hard part.
 

EmmaLVee

Active member
Joined
Apr 4, 2016
Messages
42
Reason
DX FIBRO
Diagnosis
08/2015
Country
US
State
PA
EllaForgotten, I'm bringing this back because I just recently had to wean myself off of Topamax (because of a low white blood cell count, ugh) and I'm unsure what is a "withdrawal" and what is just my common Fibro, everyday feeling terrible. I've been weaning for several months now (and I'm completely off of the medication now), and I'm becoming very worried about what may happen now that I'm no longer taking it. Did you experience weight gain? Nausea?

Topamax absolutely helped me, and I'd still be taking it if it weren't for my silly body's weird reaction, so I am hoping it helps you too!

Does anyone have any experience coming off of Topamax? I just tried searching the Forum and keep getting an "error" message.
 
Status
Not open for further replies.
Top