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View Full Version : Blessing in disguise...Topamax


anewday
06-08-2009, 04:53 AM
It's an anti-seizure, med, but I thought this was the closest section for it.

I finally made it to the neurologist a few weeks ago for migraines. I was really upset because he took me off Verapamil ER that my primary took me on for migraine prevention (because I have low blood pressure). He mentioned Topamax, and asked if I had ever had kidney stones- I passed one, a few days before I had my son. He decided to RX Nortiptilyne. I wasn't even thinking about it being related to Elavil (duh!)- I had horrible side effects from Elavil. I took 1/4 of 25 mg and still couldn't function the next morning. I tried the Nortriptilyne, and I was very drowsy. Plus, weight gain is a side effect- not something I can live with. I have been working very hard to lose weight, and had lost almost 30 lbs since November. I was discussing this with a coworker, and she metioned that Topamax has a side effect of weight loss.

I googled Topamax, and liked what I read. I searched on here, and read posts where it helped some with IC pain. I called and left a message to see if he could switch it. The nurse called back, and after swearing on my life that I would drink lots of water (kidney stones prevention) and that I was aware they were a side effect, she called in 25 mg at night, and said at my next appt in 3 weeks we would discuss upping the dose.

I figured I wouldn't have any effects from the low dose of 25 mg from what I had read. BUT, some meds really affect me strongly (hence the Elavil thing)- I can take 1 Benadryl and pass out cold- and some meds don't do anything- my body is weird like that.

Well, the side effects have hit. I do have the crazy foggy brain and speech problems- as well as shooting hand/finger pain and numb fingers. But it's sooooo worth it for the good! My headaches are better, and my pelvic pain and generally body aches (lupus) seem better!!!! Also, many foods taste bad to me, and I don't have a compulsion to eat and overeat- even cigarettes taste bad. I drink soda, but can't drink diet (IC) - sodas taste like dirt- havent had more than a sip in almost a week!!! I CRAVE water when I used to hate it- and I lost FIVE pounds last week!! Most of it's water weight- but that's good- my face looks smaller, rings fit, and my shoes are smaller- great for my bad ankle!!

I really hope they are testing this drug for further use. The side effects are rather nasty, but for people who wake up everyday feeling like they've been hit by a bus, it is worth it for the chance of relief! I plan to take this med for as long as I can- they'll have to pry it out of my cold, dead fingers, lol.

leelee88
06-08-2009, 05:20 PM
I have been on it over a year and it is the ONE med that I have not had to discontinue due to side effects.. Now I did have a few at first but once my body got use to the med I have done fine with it..

chasingbliss
06-08-2009, 06:07 PM
Same here. I had some initial issues but after a few weeks, they went away and I am fine. The Topamax replaced Lyrica for me which turned me into a ZOMBIE. I didn't really get the food tasting like dirt side effect :) but my appetite has decreased and I have lost some weight. It's hard to tell if it's all from the drug tho. My diet is severely restricted due to the IC and other dietary issues (lactose/wheat intolerant and off sugar to help yeast issues). All in all I can't complain about the Topamax. Like LeeLee, it's one of the very few meds I can still continue with no problems.:woohoo:

anewday
06-09-2009, 10:42 AM
One of my biggest struggles is that my diet isnt nearly as restricted as it SOULD be with IC...like sodas...I still drink 1-2 or 3 a day, and they do aggrevate my IC some. Topamax makes them taste nasty, so that is truly wonderful!!!!