United Brachial Plexus Network, Inc.

I have been on Topomax for migraine for 6 weeks now - 100mg/d. The side effects have been unpleasant and include: tingling feeling in head,heavy feeling in head, itching scalp, dizzy, not feeling well, shaky feeling all over , emotional, ...however the studies on this drug are there! If taken correctly, tappered up slowly, and taken long enough...THIS DRUG HAS HELPED lots of migraine sufferes get their lives back - and I'll go through all of this if there is a chance I can have my life back! If we have been suffering with migraines for years we surely can have a few unpleasant months on Topomax, once our bodies adjust...we may be home free!!! (Just a note, Up to this point I have to say my migraines have actually been a little worse - but I'll judge this drug when I get to the 3 -4 month mark.)
I hope if we are all patient - we can all have great results - I don't really know what other choice we have - if you are aware of other options let me know - I think I've tried them all!
Good Luck!

I now have more information about my friend.
As it turns out, it was actually 1-100mg pill of Topomax that she had taken the one time only. Her vision has not returned to normal yet however she is still being treated. Her intraoccular pressure is down to 7 now although she still can't see well at all. As of yesterday, her doctor told her she can stop taking one of the meds perscribed that dilated her eyes so she should hopefully expect to see a differnce in 3 days or so of quitting that particular med. It is still very scary though because they aren't sure what her vision is going to end up being. Like I said-she started out at 20/20 and now they are telling her that she will probably have cataracts, as a result of the affects Topomax has had on her.
PLEASE if anyone out there has had a similar reaction to taking Topomax one time. Please please please post a message!!!!!!! To anyone else contemplating Topomax-You should definilty read all of these posts on here. Hairloss, kidney stones, glaucoma, symptoms of pregnancy, tingling, inability to think normaly and the list goes on.

I just recently went off of 250mg of topomax after 3 years. Yes I lost the weight, I was too thin and the headaches disappeared. It has been 3 weeks, I have barely gained any weight but my headaches are right back where they used to be! I had the joint and muscle ache BAD since going cold turkey.

To Jodi
Why would you go cold turkey to this drug? Especially after 3 years? I think you should contact your doctor - and wean off of this drug slowly...I would think the possibility of seizures would be a risk ...why have you decided to stop it all together if it was helping with your migraines? What about a lower dose to hopefully continue with the the benefit of no headaches or fewer headaches while maybe putting some weight back on?

I have been taking Topomax for approximately 8 months now for migraines and Fibromyalgia. I am currently taking 75 mg at night. The migraines have decreased tremendously but I am extremely tired. I have also lost approximately 15 lbs since starting on it and have started to lose my hair. However, my doctor said that I would not loose all of my hair it would just make it thinner. I am also a Diet Coke person and have noticed that it tastes like metal. At times I have noticed a little bit of blurred vision but not too often nor have I had memory loss. As of yet I haven't had any kidney problems but I have noticed that my IBS has been a lot worse. I am not sure if that is from taking the Topomax or just effects from the Fibromyalgia. In the beginning I noticed a lot of numbness and tingling in my feet and hands but that has gone away after time. I am going to continue taking the Topomax as long as I can, it is wonderful not having the migraines anymore.

Hello, I'm so glad I found this forum. My doctor prescribe Topamax to me for my Migraines , I have tried all kinds of stuff to no advail. He has me taking 25mg daily and I'm wondering if that is going to help with the migraines because I see everyone else is taking much higher doses. Also will that 25mg still make me loose weight because I can stand to loose 10-15 pds and was finally excited about a medication that will finally make you get rid of the weight instand of making you gain while helping another problem. Thanks for any info .

My ex husband and I are currently weaning our 7 year son off of Topomax. He started seizing last March and was put on Tegratol. He had a nasty rash from that so he was put on Topomax. Since he started 2 months ago on Topomax his behavior has spun out of control. He is biting other kids, hitting me, verbally abusing everybody in his path. His handwriting has spiraled from good to illegible. He has very little memory for math and can not remember one math fact that he could do with ease before he started to seize. With the exception of stopping his seizures that medication was a disaster for my son! He is now on Depokote and I pray that his behavior improves and he does not seize. Is your son going to a pediatric neurologist? Pediatricians mean well but they don't see these kids all the time!

My doctor prescribed potasium to alleviate the leg cramps that seem to go along with adjusting to the Topomax. Apparently this side effect only happpens in the first month or two of taking the medication??? I have only experienced the leg pain when I forgot to take my potasium. Ask your doctor about getting potasium supplements.

I experienced alittle weight loss, some "forgtfulness"
What dose are yos taking? I reverse my letters when writing or typing and sometimes when speaking!
Trisha

Well, is there anything positive about t-max? I just started it for my dailey headaches/migrains @ 25mg. I took it last night for day 1. What are the other options? Thanks best wishes all.