Please tell me all the horror stories with Topamax:

I've been on this drug for about 6 years. Went off it for a year or longer. During that time I still had odd symptoms. Needing to know if something is physically wrong with me. Feel like I'm literally going crazy. Well, knowing I'm BP- that is literally itself true but taking Topamax- will add more on to that anyway..... HELP!

hi there
i have been on topamax for over nine years and haven't had any side effects
bobby

Dear Coffeegirl,

i've not taken Topamax personally.

primarily i'm aware of it being used as an anti-epileptic and for migraine prophylaxis, but it is occasionally used off-label as a mood stabilizer. it should not make bipolar disorder worse.

it can cause extensive weight loss and is sometimes given where appetite reduction is desirable. it could augment the problems if you have anorexia nervosa or have other difficulties with eating. i've read things about it possibly causing hair loss too - but you would have noticed that.

how are you doing?

~ waves ~

Here is a list of all the odd things and I'm not sure if I will remember some of them so there will be some left off due to memory loss:

memory loss

appetite loss/weight loss (first year) gained all back plus more with Abilify

facial/jaw-paralysis/numbness/severe pain- to point unable to open/speak/swallow

hearing loss- severe (some hereditary)

vision problems: blurry/double

walking: gait/balance/uncoordination-severe

vertigo: severe to point of inable to get up/sit up for days/weeks

bedspins: point of severe nausea

migraines: severe- been thru tons of various meds: Topamax has helped

tingling: rt hand/fingers

numbness: rt hand

tremor: rt hand

eye twitch:

cognative: math- difficult at times but this summer for some reason with the vertigo severity to the point of inable to walk at times- 2+3- not able to figure out. Math in previous years- nothing like that. This is why I question the Topamax theory. Simple math has never ever been a problem to THIS degree.

Thinking: Not able to find words to sentences while talking.

brain fog: space out in mid sentence. lose concentration- dazed

brain squeeze/tingling: hurts

tingling sensation: all over body at once: feels like bugs crawling all over body

itchy skin: apply expensive severe dry lotion- does not help: skin does not appear to be dry?

Walk like I'm drunk!

currently- almost all types of food is making me sick/nauseated when I eat.

fatigue: severe- worse in afternoon. if I do anything past early afternoon- my body is just worthless. I just vacuumed and it is all I could do. still have things need to do not sure how I'm going to get it all done?!

Heat makes all symptoms increasingly worse along with humidity. Hate to go outside. Even taking garbage outside will cause it to get worse.

Any type of exercise causes difficulties when the vertigo is worse.

dxd with Migraine Asst Vertigo/inner ear disorder- went thru Eply Manuever- twice; vestibular therapy- did nothing but make things worse.

Currently going off the Topamax. Have been off it before. Symptoms still there.

Bobby

You are the first person I know of who has been on it that long without any side effects. You are very fortunate!! This drug is a life savor for me. I really don't want to go off of it. It helps the migraines/bulimia so much. I'm so scared that I will have to give it up. I've tried other meds to replace it and none of them worked at all- instead- they all made me sick, gain more weight and made the symptoms worse than what I was taking it for. Not what a person wants.

I'm so glad to hear it has worked for you!! That is great! Hope you are having a good day.

Hugs

Dear coffeegirl,
wow that is a laundry list of medical symptoms.
Tell me you have seen a neurologist? or a medical doctor for some of these symptoms some of them could be attributed to the topamx but others sound more like a medical problem.
just my opinion.
sorry this sounds really awful!!!!!
bizi

what dosage are you on? I was up to 150. I noticed some cognitive difficulty when i went up to 200. I am now on 100. I also have pernicious anemia...have you been tested for that Signs and Symptoms From a Lack of Vitamin B12 9pernicious anemia symptoms)
Vitamin B12 deficiency may lead to nerve damage. This can cause tingling and numbness in your hands and feet, muscle weakness, and loss of reflexes. You also may feel unsteady, lose your balance, and have trouble walking.

Severe vitamin B12 deficiency can cause neurological problems, such as confusion, dementia, depression, and memory loss.

Other symptoms of vitamin B12 deficiency involve the digestive tract. These symptoms include nausea (feeling sick to your stomach) and vomiting, heartburn, abdominal bloating and gas, constipation or diarrhea, loss of appetite, and weight loss. An enlarged liver is another symptom.

A smooth, beefy red tongue also is a sign of vitamin B12 deficiency and pernicious anemia.

and i was deficient in vitamin d...both are easy to test for. i couldn't tolerate abilify but can tolerate risperdal. i couldn't tolerate seroquel and most antidepressants didn't work and welbutrin hardly works at all.
take care
bobby

Hi,

I was on Topamax for about a week and a half. It was absolutely horrible.

That's a darned shame that is works for you yet gives you the side effects.

Mari

I agree with Bizi that this isn't topamax. These are neurological symptoms, and I don't think med side effects could explain all of these symptoms.

I think Coffeegirl knows this, but some docs keep insisting it's this med.

I hope your docs can figure this out soon.

(((((BIG HUGS))))))

-Kay

Hi Mari, I read that you were on Topomax for a week and a half. You said it was horrible. Can you tell me what were your side effects and how long it took for them to go away? My husband has been on it for 5 days at 50 mgs a day and now his hip is paralized. He can't bent. He can't bend his knees. He can walk, but he looks like a robot. Any info you can provide me will be greatly appreciated? Brenda.