United Brachial Plexus Network, Inc.

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I have been reading the posts regarding brachial plexus injury and Topomax, still trying to learn about Topomax... and the constant upsurge of side-effects. I do not think I would stop taking it as the positive effects have been so good in my case, but I seem to discover more and more side effects to watch for ...

however, "Possible symptoms of a brachial plexus injury include: ... lack of muscle control in the arm or hand " jumped out at me from a post I just read in answer to someone's question about bpi... and I was wondering what a brachial plexus injury was too, I must admit...

I recently enjoyed??? an emi including the insertion of needles into my forehead to examine the muscles around my eye to allow the neurologist to decide whether or not I do have MG (as yet MS has not been ruled out totally) and the results came back today basically ruling out MG... so we are back to questions about injuries in the past that might have caused the epilepsy and that might be responsible for the lack of muscle control in my arm and hand and in my eye...
Sometimes I wonder if the internet is not giving me too much information to worry about... and wonder about...

OMG UR POST WAS THE BEST, I AM GETTING READY TO START TOPOMAX, CAN YOU EMAIL ME PLEASE, AND THIS IS MY MASTER SO IF YOU SEE ME ON IM ME PLEASE AM A LITTLE NEROVS, AN THESE POST ARE SCARRING ME, EXCEPT FOR YOUR STANKS SO MUCH,. PLEASE EMAIL ME WITH SOME ADVICE

NERVOUS IN MICHIGAN
SHANE CLARK

I have been reading everyones storys and very scared, I wasn't sure if i wanted to try this drug I've only heard 2 people say good things about this drug.I think i could deal with the side affect rather than the migraies. thanks for one good letter.


Jamie

I've been taking Topomax for about a week now for migrianes and started out on 15 mg per day. I went from having a headache almost everyday and a severe migraine about once a week to pain free for the past week. After my first week I was supposed to increase to 30 mg a day and the next week to 45, but I am pretty scared because of the side effects I read about. Since it has been helping I'll just stay at this low of a dose. I don't want to increase it and suffer depression as a side effect. I've been battling it for 6 yrs. and finally have overcome it. I also don't need s.t.m. loss. I'm getting mine back, I'm a 6 1/2 yr. post TBI patient. I've felt nausea off and on almost every day since I started Topomax and have felt little tingling in my feet. Thank God it helped the migraines and so quickly, but I plan to stay at the 15 mg per day.

I have been on topamax for awhile, along with 900mg of lithim, and 600mg of seroquel. I am Bipolar. I am a rapid cycler.I simply don't have much peace.I am either severly depressed or pinging off the walls. I live for the few times I am hypo-manic. I actually feel good them and can accomplish much. I write, draw and paint and have a pretty good head for business, unfortunatley those times are few and far between. I use to work as a travel agent, but am now disabled. You can't do travel for peopel when you can't remember where it is you are supposed to send them!
I think the topamax is helping but the side affex are hard to live with. I am in pain alot and I think it may even cause the depression to be worse, but maybe the rapid cycling is not as severe. As for the weight loss. I may have lost a few pounds, but I havn't lost very much weight, and I could stand to lose about 20 pounds. I wonder why I am the exception to the rule? Someone tell me what I am doing wrong here!

I have been on topamax for awhile, along with 900mg of lithim, and 600mg of seroquel. I am Bipolar. I am a rapid cycler.I simply don't have much peace.I am either severly depressed or pinging off the walls. I live for the few times I am hypo-manic. I actually feel good them and can accomplish much. I write, draw and paint and have a pretty good head for business, unfortunatley those times are few and far between. I use to work as a travel agent, but am now disabled. You can't do travel for peopel when you can't remember where it is you are supposed to send them!
I think the topamax is helping but the side affex are hard to live with. I am in pain alot and I think it may even cause the depression to be worse, but maybe the rapid cycling is not as severe. As for the weight loss. I may have lost a few pounds, but I havn't lost very much weight, and I could stand to lose about 20 pounds. I wonder why I am the exception to the rule? Someone tell me what I am doing wrong here!

My heartfelt greetings to you all. I have read at least half of the 215+ posts on this thread, and really wonder what variations may well exist on conditions such as TBI, Bi-polar depression, hydrocephalus, or cervicogenic headaches. You really do have to stay on top of these doctors as well, because, who knows what perks they are being given to scribble out a prescription for the latest designer - crossover drug. I am not trying to cause confusion or aggravation, but I AM of the strong conviction that we as individuals, largely responsible for ourselves, MUST PAY ATTENTION to what we ingest - food, drink, and to what our habits are - therapy (physical, emotional, psychological), and, if our condition allows, exercise.
I, myself, am so sick and tired of one CT scan and MRI after another - especially when the latest neurologist did not even look at the MRI. It was like, "headache? Here's topomax. Do as I say, do not ask any questions, and do not change anything. I am in control!"
Chiropractors, massage therapists, acupuncturists, pain pills up the wazoo, neurosurgeons itching to get me under the knife for the DDD or whatever acronym is assigned to degenerative disc disease in my neck....
My apologies - I do not even know (in some people's opinions, who are, understandably dealing with much greater injuries and complications and pain than I) if I qualify to be on this thread of info and support sharing. But 'info' and 'support'? How can that ever be a bad thing? - Ahem, sorry, I digress again. I have an arthritic, disc degenerated, vertebal crowding in my neck. I have suffered injuries, but they do not affect my limbs per se, they travel in excruciating ways upward into my head, mostly. I feel like my muscles have learned to be in chronic spasm for so many years, it may take injections to break up the 'pattern', so to speak. (Trigger point injections, sometimes when the tip of the needle contains 'procaine' or something?) But, hey, what do I know, it's only MY body, and I am only doing all the research and self-educating I can just to break even and FEEL GOOD, like we all deserve, for heaven's sake!!!!!
I know, I go on and on. Thank you to anyone who has been patient and kind enough to read yet another post. I sense everyone's yearning for answers and levels of confusion, but I know you all have strength and resolve as well. The commitment to get better!!!!
Love to you all, and have the best holiday you possibly can. Please remember - DIET DOES COUNT in how you feel - in the extent of symptoms and of side effects!!!

Carolyn

My husband, (48), was recently diagnosed with Neuropathy, which is a side effect of hemo-dialysis. The neuropathy was giving him the pins and needles so many of you describe as a side effect of topamax. Last week he was put on topamax, 25mg twice a day, to increase in one week to 50mg twice a day. I came to this site to find out what side effects to expect. Wow! This is spooky! His neuro doc diidn't say anything about side effects to us and now I wonder if it is going to effect him the way so many others are effected. The weight loss is a plus for him, but he is already griping about a metallic taste in his mouth and a root beer not tasting right. Since he is already in kidney failure, I wonder about the kidney stones with him? His fluid intake is greatly restricted, half gallon a day, already because of kidney failure so staying flushed out with plenty of fluids, water is a no-no. He is already experiencing the metallic taste after only being on the drug since 12-17-03. I guess I am wondering if there's anyone reading this who is on topamax for neuropathy like my husband?
The pins and needles with him has been going on for 3 years and topamax was going to be our miracle drug. It sounds like the miracle is if you survive being on the drug! The part that scares me is the post where the person smokes weed and had a bad reaction. This habit of my husbands greatly helped the neuropathy but the docs all thought he just wanted a free ride on drugs and blew us off during the last three years. My hubby isn't going to give it up and it scares me to no end what the effect may be on him. If I mention this to him, his attitude will be that it won't happen to him, as with everything else.
I guess I am just venting...
Thanx to everyone for listening and hope you all have a pain free, seizure free Holiday!
kraazykat

Hi again, I hope everyone had a great christmas and a happy and safe new year. I haven't had an opportunity to read up on the forum since my first posting in October when I first started taking topomax for my chronic migraines. Today is three months later and it has been a rocky road but I am finally feeling better and some benefit from the drug. I began taking the topomax 25mgs every other day and within 12 hours of my first dose I was extremely nauseated. I dismissed this as being something else so I stayed in bed and kept taking it. By the the end of the week I was unable to eat or drink anything and despite reducing the dose to a half pill every other day, by the end of the second week I was hospitalized with severe nausea and abdominal pain for rehydration and investigations for a week. My family doctor and neurologist both concluded it was the topomax and stopped it.
I was almost completely bed-ridden for two months!! I decided that I was not convinced that it was the topomax so started taking a low dose again. My doctor was not impressed and the neurologist hasn't found out yet!! My doctor is very supportive and we are increasing my dose very slowly. It has taken three months to get my to 25mgs tid and I am not eating too well but I have lost almost 30lbs.
As an RN it is hard sometimes having too much knowledge, for a while I was really frightened. Any questions let me know. Have a safe new year.

I have been taking Topomax for 3 weeks (100 mg/day - 50 in the morning; 50 at night)and for the last few days I have been experiencing flu like symptoms. I have not been thrilled with my neurologist for several reasons but when another doctor in the same medical group told me it was simply not possible for Topomax to cause "flu-like" side effects, I decided to check out the online forums.

My syptoms have included headache, nausea, body aches, sore throats,coughing, and, now, a nice,raspy voice. I concur - it is very difficult to tolerant during the work day.

Since I am taking 100 mg., I may try going down to 50mg to see if it reduces my side effects. Thanks for preserving my sanity.