United Brachial Plexus Network, Inc.

I have been on Topamax since March for focal seizures. I have been have severe gastric problems. They took my gallbladder out thinking that was the problem. No prevail. I am still sick as ever. I can't eat. I lost 37 lbs since March. I get such bad stomach pains I dont know what to do anymore. I only eat once a day. Food is not in my life anymore not because I don't choose to eat but because my body won't let me. I had to quit my job in EMS and get a job in a the hospital working admissions. I will be doing something and then forget what I am doing. I can't take the tingling in my feet. It hurts so bad sometimes I cry. I get bad hallucinations of (spiders). I wake up in the middle of the night screaming looking all over because I thought I saw a spider come down from the ceiling onto me. I only take 75 mg in the morning and at night. I couldnt take anymore b/c it made me sick. I still have seizures but not as many. After reading all of your posts. I am taking myself off the medication for awhile. If I get better then I know I lost an organ for nothing. I will take a seizure anyday of the horrible side effects I am going through right now.

Hi Lisa,
My deepest sympathy to you for the loss of your husband. I also have BiPolar Disorder and Topomax is one of the meds I am on. Most people who are Bi-Polar have Thyroid disorders - I do as well. One of the problems I am researching now for myself as well is I am EXTREMLY amemic. My iron count is down around 17 (40 is considered low). Side effects of anemia are swollen heart from the heart not getting enough oxegyn. My Phsyc Dr. thinks it could be my topomax - my other Dr. (internist) thinks I have internal bleeding?? Do you have blood records for your husband? Has anyone else had these symptoms - they are very serious? Please help?

Hi Lisa,
My deepest sympathy to you for the loss of your husband. I have a few things to ask. One is do you know if he had problems with anemia? The other is can you or do you have records of blood count to check... read below.

I am also bi-polar and have found over the years that many bi-polar people have thyroid disorders - like myslef. Also, like your husband topomax is one of the drugs I am on. Recently I have been feeling extremely tired and lethargic. I donate blood every 56 days. The last 3 times I went to donate I was declied for not enough iron. Odd? I thought. I went to the Dr. and found I was EXTREMLY amemic. Bad cases of anemia can lead to enlarged heart from lack of oxegyn and even death - Please do some research on this. My Phsyc Dr. thinks my levels can be related to the Topomax. My internist thinks my levels are so low it is from internal bleeding - Now the tests begin??? Does anyone else have these symptoms or problems?? Please respond and help?

hi, I take topomax too. I also suffer tremendous migraines because of Arnold-Chiari Malformation. The one treatment my doctor has done that seems to help me and my sister (she has Chiari also) is Botox injections. We get them every 3 months. they inject them on our forehead,between our eyes, all over your skull, on our necks, shoulders, shoulderblades and on my jaws (because of my TMJ). I usually get about 40+ shots. This helps the muscles to basically take a nap. Our insurance companies both approve the Botox for migraine treatment. It originally was designed for cosmetic treatment for wrinkles...so that is a plus!! especially to all the shots that are given on the forehead/ eyebrow area... But on a serious note it is a very effective treatment. Hope this helps.
Good Luck.
Terry/ Texas

I've experienced the "radio" in my head a couple of times since gradually increasing my dosage to 200mg daily under a doctor's care for migraines. I'm curious why it took several months for this side-effect to appear, though. I've also experienced the degradation of taste, tingling in my extremities, and cognitive trouble.

I didn't immediately associate the voices with my Topamax until my boyfriend recalled reading about possible psychotic hallucinations in the Rx pamphlet. It sounded like a number of women arguing loudly and angrily at each other, but not at me. I remained aware of my surroundings, but was forced to wait for the arguing to stop.

I was taking another medicine for headaches before (Inderal) but switched for the weight loss benefits of Topamax - which I haven't experienced. The voices are unnerving, though; I'm worried they'll come when I'm driving. I think I'll switch back to the other medicine.

It is interesting that people who use this RX for migraines seem to have similiar side effects that the others who use it for different reasons don't. They have other side effects we don't seem to have. I use this RX for migraines. I started with a low dose and raised it to 100 mg twice a day. i experienced the extremity numbness and tingling on an ongoing basis, but it was off and on throughout the day. I sleep well at night, but am drowsy during the day. At 200 mg a day I was terribly confused. I had difficulty driving my children to school. I knew where their school was and how to get there, but I would miss the turns and get confused as to which road I was on. I haven't heard voices, but couldn't keep a thought in my head and short term memory was non existant! I couldn't remember what I said as I was saying it. My doctor wanted me on the 200 mg for best results, but both agreed I couldn't live like a zombie and it was getting dangerous driving. I don't have a life threatening disease, but have suffered dibilitating migraines for 25 years. They are not typical. The Topamax has decreased the severe pain, but I still deal with what a normal person would call a headache and I have numbness and pressure all over my head. I feel as though I am carring a boulder on my shoulders all day long. Do any of you other migraine sufferers feel that way? It has finally thrown me into a depression the last two years I am having a difficult time getting out of!

As for weight loss on Topamax. It appears that tose of us who want and need the weight loss are the ones who aren't getting it. I finally lost four pounds after three mopnths an that was on the the 200 mg. My appetite has decreased significantly. My doctor expected me to loose a great deal of weight, but it hasn't happened-the story of my life. I eat fairly well too. Veggies, fruits,white meats...no processed stuffed...exercise. Just keep on keppin on.

Good luck to all of you and God Bless. May the powers that be give you the strength you you need to move forward each day and conquor your ills.

Deb

my daughter is nine and developed a year ago complex partial seizure disorder. we were on trileptal and that seemed to be working until june. over the summer they switched her from trileptal to topamax. she is taking 150 mg a day. i have complained to the doc about the side effects but they keep upping her meds. her legs hurt, her arms legs and face go numb feeling, she has a horrible memory, cries for no reason, gets violent, is tired all the time. can anyone tell me if they have found any seizure meds that work with less side effects? we see our neuro in a week and i am going to tell him i want her off this med because her quality of life right now sucks because of this med. thanks in advance

my nuero warned me about the effects of topamax on the kidneys. Causes kidney stones ect. Did you have a base line blood work up done before you were put on topamax? WhAt does your neuro say now??

Danielle

I just attended the National Institute of Health conference in July on Physicial Disabilities Through the Lifespan. At this conference there were many topics. I was there as a member of the Board of Directors of United Brachial Plexus Network and of course representing UBPN. During one of the sessions we had four speakers. One was Dr.Kozin on the topic of Obstetrical Brachial Plexus injured.

Dr. John Mark Freeman spoke on Epilepsy. He is Lederer Professor Emeritus of Pediatric Epilepsy and Professor of Neurology and Pediatrics at John Hopkins University School of Medicine. He is Honorary Lifetime Director of the American Epilepsy Society. I went there without any experience or information on epilepsy. He gave an outstanding talk on the effects and current treatment, medications, lifetime care and one topic was very interesting. He spoke about diet and studies he was very impressed with that included changing diet until the child was off med and seizure free... I was so impressed... He is with John Hopkins hospital in Maryland... please check it out if you are worried and see if they can give you some direction on medication for a 9 year old.

I hope this helps.
Kath

take dilantin my husband was on tegratol and dilantin has been great