Posted by Not me on November 19, 2003, at 16:05:14
In reply to Re: Topamax/results and side effects, posted by anna on August 11, 2001, at 23:01:25
Just wanted to add my experiences here to the board. Not to frighten, just to inform. I started Topamax for migraines. I was concerned about taking Imitrex daily and the doctor had this new drug that would prevent migraines. Sounded great. Only side effect that she mentioned was rapid weight loss. (I need to lose 40 pounds so that didn't sound that bad)
I started 25 mg Topomax on November 3. I had an MRI on November 5, and it caused my left arm to swell. I went to the doctor on November 10 (does this seem like a person in a panic to you? Or more like a person who HATES to call the doctor.) I was diagnosed with pheblitis in the left leg and swelling of the arm and given a Medrol dose pack (which I may also have allergies to) and sent home. I started 50 mg Topomax that night. In the first week, I had already lost 4 pounds! (With diet and exercise, I typically lose 3 pounds a month!)
On Tuesday, I lost all interested in anything other than the blood clot (phlebitis in my leg). I couldn't make myself eat very much, and I was terrified to be alone. As the week progressed, my symptoms got worse. On Wednesday, I called the doctors office. On Thursday, I went to the doctor to see about my arm that now also had a blood clot (phlebitis) in it, and to ask her about lowering the Topomax. I was having terrible panic attacks, and could not focus on anything. My head felt like it had a million bees flying around it. The doctor referred me to a Vascular Surgeon and left the room, we didn't discuss the Topomax. (I had now lost 3 more pounds) The next day, I ate 2 level TBS of icecream for breakfast, one PB sandwich, and 5 grapes over a period of an hour for lunch and one cluster of crab legs for supper-They were all forced to myself, because I was terrified by the fact that food was making me gag. Not only had I stopped eating and drinking like I normally did, but I had severe diarrhea and night sweats. I dropped the dose of topomax back to 25 mgs on my own. On Monday, November 17, I called the doctor to see if I could stop the medicine, and she assured me that my sides effects (insomnia, panic attacks (constantly-I don't take any other meds) rapid heartbeat, numbness from the breast up, inability to sit still, total inability to eat, sleep and concentrate were not due to Topomax. I had been on it for 2 weeks and lost 7 pounds. That night I did not sleep more than 3 hours, and the next day, I was terrified to be alone. (This from the woman who danced her youngest off to kindergarten just a few months ago and couldn't wait to be home alone) After going 48 hours with little sleep, I took a sleeping pill and got some rest.
It has now been 3 days since I took a dose of Topomax. I am having no panic attacks, although my body occationally does still respond as if I am. My face still feels numb and I am still having trouble concentrating. The fear to be alone is slowly going away, although my mom was here all day, so that may be why I don't feel that anxious about it today. I still can't seem to sit still for more than one second at a time. I hope to sleep better tonight. I got for an ultra sound of my arm on Friday to see if the phlebitis is all we are really dealing with. But I was calm when the doctor told me. (A week ago, I would have freaked out.)
In the last two weeks, I can't tell you if my kids have eaten, bathed, done homework, anything. I have been in a daze. Haven't had a headache, but I haven't had the ability to take care of myself or my family either. I am sure my results were not typical, as I sensitive to drugs and tend to respond weirdly to even over the counter drugs. I don't want to discourage someone who needs this drug to save thier life from taking it, but they need to know that they need to go slow (my first mistake), have a doctor that will work with them and believe the symptoms they are having could be caused by his/her wonder drug (my second mistake) and thirdly, if it doesn't work, not be afraid to say, it isn't working. I knew the first day I took the 50 mg it wasn't working and yet I did it for 4 more days. Then dropped to 25 for 3 more after that.IF I needed this drug for Epilepsy, I would try and take it. For weight loss, NO WAY. For migraines, probably not. I wanted to only have to take one pill. Seems with this drug, you need something for the panic attacks (Wellbutrin), something for the insomnia, something for the tingling... The list goes on. So I am back where I started.
And NO I do not think the Topomax caused the blood clots (phlebitis). I have small veins, and get them when I have to have an IV injection. The doctor is trying to figure out why, but the Topomax wasn't responsible for that.
I am thankfully drug free, and hopefully symptom free in the weeks to come. Today has been one of the best days I have had in November.
poster:Not me
thread:74325
URL: http://www.dr-bob.org/babble/20031116/msgs/281330.html