Thread: Topamax
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Old 03-29-2013, 08:56 AM
"Starr" "Starr" is offline
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Join Date: Apr 2012
Location: Ottawa, Ontario, Canada
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"Starr" "Starr" is offline
Member
 
Join Date: Apr 2012
Location: Ottawa, Ontario, Canada
Posts: 312
10 yr Member
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Quote:
Originally Posted by camyam73 View Post
Well, this is the new drug the specialist wants me to try... I'm just not sure about this, as it seems every drug he gives me for my head has had bad reactions, and I've had to stop...

Anyone else try Topamax? I've read it makes you sleepy and fuzzy... not something I need MORE of to be honest.
Camyam, I know many haven't gotten along well with Topamax, but this is my experience with it. I'm very wary of taking drugs and have been extremely drug sensitive since my injury.

When I first went to the rehab clinic lasat summer, my physiatrist suggested topamax, but in a very small dose. Generally the smallest dose is 25mg, BUT it does come in 15 mg, so we started with 15 mgs at bedtime for a week. Then we added 15mgs in the morning as well. After a month or two, we added another 15mgs at bedtime, after a week, added another 15mgs in the morning.

We've been slowly increasing like that since... I'm now at 100 mgs at bedtime and 50mgs in the morning (eventually the morning dose will match the bedtime dose, but now that my dose is getting higher we are going extra slowly.)

Honestly, the only side effects I've noticed are:
- some food tastes like crap. Mostly processed foods that really I shouldn't be eating anyhow. Like pop, which I didn't drink before anyhow, even a sip now, tastes like poison. Really not a bad thing. Its a drug that sometimes gets used for weight loss and I'm sure this is how it works is by making food taste bad... also seems to decrease my appetite a bit. I've not *lost* weight on it, but I've also not gained a pound in the last year since my injury, partly due to the topamax.

- a slight bit of hair loss. Nothing major, no bald spots, I started out with extremely thick hair that had to be thinned with every hair cut... now there's a lot less thinning to do... but the hair dresser still has to thin it a bit in spots, so its not much hair loss... I just notice a bit extra in the brush now and then.

I've not noticed being more tired, but I think that's due to the very careful and slow increase program we did with the drug. I've also not noticed being more fuzzy, but again with the slow increase, maybe that's been minimized or maybe I'm just so fuzzy to begin with??

As for improvements, its not been a wonder drug for my headaches, but there have been improvements. I used to wake up crying from head pain at night. I sometimes will still wake up from head pain, but less often and not crying anymore and I can usually just go back to sleep.

As with all the drugs, you'll never know how it affects YOU, until YOU take it... you can read all the different stories, but it could still be amazing for you or absolutely awful or somewhere in between.

In spite of my aversion to medication, at some point, I decided that I had to start giving medications a fair try (a month or more trial) to see if they would work for me, otherwise, maybe I was missing out on something that would work. I was also starting to worry about being a non compliant patient and having the docs at the brain injury clinic just giving up on me since I was refusing all their suggestions.

I'm lucky to be a patient there, most don't get in and I figure I better at least be trying their ideas or I should leave the program and make room for someone who is willing to try.

Good luck to you, I hope you find something that gives you some relief that is tolerable side effect wise. I figure nothing will be perfect, but as long as its tolerable, maybe its a win.

Starr
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Brain patch (03-29-2013), camyam73 (03-29-2013)