United Brachial Plexus Network, Inc.

I am wondering if anyone has taken the drug topomax and if so was it helpful? Did you experience the side effects that I did......weight loss or depression? In addition to that it slowed my mind down......I just couldn't think as quickly, was very forgetful, would forget words and lose my train of thought. I actually thought it helped the pain but struggled with the side effects and felt like I became TOO thin. Any thoughts?

I have a client that was on Topomax for a trial of 6 months. It helped her pain but it made her severely depressed - she was almost unrecognizable emotionally. She came off of it and it took about a month or so for her to regain emotional balance.

Hi Suzanne, sorry to hear about the pain. Topomax is an anti convulsant, these are used in some cases where shooting pains predominate. When I searched google about it, there were a large number of references to the side effects you mention.
Here's a link to a page about various treatments used for persistent tbpi pain which may be helpful. http://tbpiukgroup.homestead.com/centralpainbpi.html No one modality seems to help all tbpi, so you may need to experiment (with the guidance of a specialised pain clinic) to find what works for you. In most cases long term the pain does lessen, or you learn to use distraction to help divert the pain signals to the brain (the Pain Gate theory) good clinics do actually teach techniques to do this and it's probably what most of us end up using, albeit unwittingly-I returned to work and within days the pain was much less, because I was fully mentally occupied. When my specialist had suggested this I thought he was just dismissing my concerns, or thought I was a junkie wanting more drugs, but he was right! Talking to other long term sufferers I've found that many say once they got off the pain meds their pain actually did decrease, this happened in my case. Good luck and I really hope you get some relief soon, the pain really does suck! Jen NZ

Suzanne
My brother was on Topomax to control his Epilepsy and he too suffered severe weightloss and it aggravated his short term memory loss ( he has poor s.t.m. recall due to a brain tumour) He also became very depressed and argumentative. He too has changed medication, but hasn't regained as much weight as he lost.
I am so pleased you posted this, as I must admit, I was sceptical when he told me he was coming off the medication and thought he was over reacting, so thank you for making me stop and think and take more notice of him.
I hope your pain gets under control soon
Blessings
Karen

My wife, Kelley, took topomax for less than a week and its side effects were depression as well a some muscular problems with her legs. They went numb and she could hardly walk. She stopped taking it and the legs were ok after about 5 days.


This site has good nformation about Topamax
http://www.nlm.nih.gov/medlineplus/drug ... 03085.html

She suffered a severe BPI stretch injury 3 years ago in a 4-wheeler accident. The nerves from C5, C6, C7, C8, and T1 were all severly streched and much scar tissue resulted. She's had one nerve graft surgery, 13 1/2 hours! where sensory nerves from the backs of her legs were used in an attempt to re-inervate the arm muscles. Her right pectoral nerve was also taken to attach to the bicep. Unfortunately, she's never regained use of her bicep, and her wrist is not able to bend up. Flexion? She now must get another doppler to see if the lat muscle can replace the bicep. It's a transfer, not a graft.

My wife Kelley, who had a severe BPI injury about 3 years ago. She took Topamax about 1 1/2 months ago for abhout 5 days. Her apin management doctor sent her to a therapist to help her gett off some / all of the medications she's doing. She does methodone, kaidian, elavil, ritilin to keep her somewhat level. She was prescribed it while attempting to get off all the other medications she's been on for so long. She experienced severe depression, muscular coordination problems. Her legs went numb and she had major difficulty walking for about 5 days. When she stopped taking it, her legs started getting better within 5 days. The doctor who prescribed it, said it was stress related ans she wasn't taking it right. I don't buy it, and she won't take Topamax again. Or see that doctor.

Since that time, we've looked into some alternative medicine, as our doctors only want to see the symptoms and not the overall problems she's having. We're seeing a Naturologist.

She is more of a nutritionist and takes a holistic approach. Kelley has done a blood test and the doctor is going to use the results of the testing to give Kelley a personalized diet that should make sure Kelley has the proper levels of of vitimins and minerals and is overall healthy.

It's her belief that obtaining the optimum balance in the body, will not directly provide pain relief, but will make Kelley feel better mentally and physically. That along with postive re-inforcement should hopefully go a long way to improve Kelley's quality of life.

Here's a link to Topamax information:

http://www.nlm.nih.gov/medlineplus/drug ... 03085.html

I have been using Topomax for pain relief from migraine headaches when I sustained a BPI in Feb '02. My doctor had also placed me on Amitriptyline to offset the depression and aid in the pain relief. I voluntarily decreased the dosage of my Topomax because higher doses (approx. 75 ml daily) were giving me s.t.m. loss and disorienting me. I actually got lost at the tree farm last year picking up our Christmas tree. It really scared me into decreasing my dosage.

My 17 yr. old daughter, who has been on Topomax for 2 weeks now for migranes, taking low doses (50/50) mg. The side effects she is experiencing are numbness in the feet almost all the time and very cold hands. IS this normal? Will it wear off over time. SHe is expected to go up to 100/100 mg in about 1 month. So far she has not experienced the slowness. Any info would be helpfull.

Was the tingling almost like when your feet or hands go to sleep and then blood comes back in again? Did you experience numbness or no feeling in your hands and feet? Did your face ever get red adn flushed or feel like it was on fire? What other meds did you go to, to help supress the migraines?

I was put on Topomax about a year and a half ago bc after not reacting to any medications (my doctor at the time thought I was Bipolar I) this was a last resort. I experienced the tingling, loss of concentration, I found myself unable to finish sentences and would lose my train of thought to the point where my friends would ask me if I was ok. My memory was effected and I lost a tremendous amount of weight over this period and this is from only taking a minimal dose of 50mg per day. I have stayed on that dose for the past year and a half bc I was convinced that it was the only medication that was helping me until now. I just changed doctors and now am no longer diagnosed as bipolar (no wonder I did not react well to every medication out there) but he did not want to stop the topomax until just recently bc my weight has dropped so low due to chronic anxiety as well. I got used to the side effects bc I was desperate and the doctors had me convinced that the low dose I was on could not make me lose that much weight. But now I can't take it anymore and was demanded to stop and have to get some weight on me or I will end up in a clinic. This drug seems to have the same side effects on everyone I have spoken to. Now lets see if the weight comes back.