User Reviews for Topamax to treat Seizure Prevention
Topamax has an average rating of 5.9 out of 10 from a total of 38 ratings for the treatment of Seizure Prevention. 50% of reviewers reported a positive effect, while 34% reported a negative effect.
“This is for the Newbies out there. I started this medication when I was 15. Had my first seizure few days before before my 15th birthday. The first side effect you will experience is sleepiness, don't fight it. Let your body get a nap between 1-3, which I found to be the best time. I sleep for 1 hour and still can fall asleep at night. I am 21 now. Some advice to you, whenever you don't feel like eating I found that sweet tea gets me hungry, find that X factor in you. The weight loss is insane. I lost 40 pounds in 6 months just by breathing. Now, sleep patterns are important. If an average person needs 8 hours you and I need 9-10 MINIMUM also try to take the dose at the same time every day, you will fall asleep faster. Hang out to see sunrise.”
“I've been on Topamax (250 mg/day) for 8 years now. Up until last week, I was seizure free for 7 years. Everything I tried prior to Topamax resulted in breakthrough seizures every couple of weeks. Topamax enabled me to get my license, a full time job, move out of my parent's house, and eventually get my Bachelor's degree (next year!). Put simply, Topamax gave me a life!”
“This medicine was great in taking care of seizures but I honestly felt like I was crazy most of the time. I lost weight which I was happy with but when it comes to the final review, I was a crazy, small person. I couldn't even call an order in on the phone because I couldn't think fast enough, I went back to my doctor and ask him to take me off this.”
“I've been on and off Topamax for 20 years, works good and I've lost over 100lbs. Very good medicine. Also I've had five brain Surgerys in my life for seizures because mine was so bad now I'm down to maybe one every 3 years dry mouth a little bit but I rather have the dry mouth and be 100lbs lighter and able to drive and do things then to be off it and have only God knows how many seizures and not be able to drive.”
“Best medication for me yet- I have my life back. Give it time and be patient. Let your body adjust to the drug slowly and be sure to stay hydrated and eat enough even though you might not feel hungry. Drinking smoothies helps. Get enough potassium and you wont feel tingly. I can finally go back to being a student and ballet dancer without seizures! Trust me- this medication can give you your life back.”
“I was prescribed this medicine to treat my petite mal seizures. I was never warned of any potential side-effects, and never thought to ask, seeing as I had never taken a medicine before. After I began taking this, my seizures graduated to full out grand mal seizures. I couldn't speak, I couldn't understand others' speech, and I couldn't sleep more than a few hours most nights. Everything came to a heads about four months after I began taking the medicine, when I couldn't remember how to say "Bye" to my dad. I would have rather had seizures EVERY day than stay on Topamax! I got off of the medicine, and am now on Lamictal, under which I haven't had any seizures or side-effects in the two years I've been taking it.”
“I have been on Topamax for about 4 years. I have a brain tumor and migraines with seizures. I was on Divalproax and had gained weight (178lbs). I am 5'3". When my doctor put me on Topamax, my hands and feet tingled, everything tasted like metal, for about a month or so I also felt like I was on "speed". After the first month or so and some dosage alterations, I am very happy. No seizures, headaches gone, I am now a size 3, yeah, and will be very upset if someone takes my Topamax away.”
Frequently asked questions
- When's the best time of day to take Topamax?
- Can you stop taking Topamax suddenly?
- Is Topamax a controlled substance?
- Does topiramate cause weight loss?
“I've been on Topiramate now for 3 yrs after switching from Lamotrogine, on which I had a full-on epileptic seizure. My experience on Topiramate however has been fine. I lost weight like others seem to have, but have since put it back on. I surrendered my driving license for a year after the seizure but have since got that back. I carry out my job with ease as well so really can't complain there. The only issues I've had are the side effects of tingly hands and feet, sudden dizziness, becoming very, very tired all of a sudden - and more recently - losing my train of thought, getting confused easily and being unable to focus. I've noticed this mainly happens though when I'm bored and have nothing to do. When I'm busy, all works well.”
“When I first used Topamax it was for seizures but I had not been diagnosed with bipolar then it was thought to be depression. I lost 83 pounds but I stopped taking it because of the tingling in my hands and face, but after trying other medications years later I gained 123 pounds which I was devastated and plunged in a deep depression that I am still in after reading about again I know, I can live with the other things it seems minor to the darkness I have been living in I can't what to try it again after realizing its better than 99% of things I tried when I go to my appointment in two weeks. I'm excited for the first time in a long time to try it again.”
“Topamax is very good at helping me with keeping my seizures away. My main problem though, is sometimes anywhere between 3:00 and 5:00 in the afternoon I have a "nap crash". Meaning my eyes want to close because I feel drowsy no matter how much I try to fight it and within a few minutes after my eyes close I'm completely unconscious.”
“I've been on this medication for 3 years now for my seizures (50mg/2 daily) and have not had any episodes since. At first I would get a tingling feeling in my fingers and toes (like soda fizz), but it went away once my body was used to the drug. Recently, my pharmacy switched me to the generic version and I hated it. Immediately that first day, I would get crazy headaches, feel dizzy, sick to my stomach and I couldn't concentrate on anything. I went back to my neurologist and got a new prescription for brand name only and have not had any problems since. I was also still using the drug during my recent pregnancy and am happy to report no problems or side effects what-so-ever.”
“Good medication, reduced My GMS disorder but now I see the effects of being on this medication. I've been on it for 3 years now and like I said it reduced my grand mal seizures. But I've lost 40lbs. I have trouble. Speaking the complete thought in my mind and I'm always exhausted. Though, I have other issues that affect my sleeping habits, as I am a veteran. Pros and cons so consider them.”
“After weaning off the old med and onto the Topamax he was taking (1000mg twice daily) he is a tall skinny guy but at 6’5 weighs around 190-195. He was on the prescription for 6 months. .shouldn’t you request to see him sooner considering how significant his med switch was? He dropped down to 160 pounds , but still had small episodes. He was desperate to make them work and overall wasn’t sure when to actually call the doctor with issues because he didn’t want to be a bother. Problem is these meds weren’t prescribed very well and he just threw him on them without having baseline tests (blood, recent MRI) etc to base his switch on. He has now been switched again to the acid one as well as cepra (sorry spelling I’m not sure) but this is the fourth medication he’s been on, But yes the topomax isn’t great for already thin people, and also the side affects heavily affected his speech and ability to think clearly (he sounded drunk half hour after taking them)”
“I found this drug to be very effective to control my seizures. Before taking Topirimate, my seizures were uncontrollable. I would get 3-5 seizures per week. Not including the amount of injuries I sustained- fortunately, nothing serious, just bumps on the head and sprained ankles from falling over. But I've been so lucky. I've also lost weight. Amazing. I've wanted to lose weight for a while now. I've lost about 2 stone. But unfortunately the appetite suppressant within the Topiramate has ceased. It doesn't last very long. My appetite has come back :-( But the seizures have been greatly reduced. Which is the main thing, which I'm very happy about.”
“Have been on it for two weeks now, lost 20 lbs, had two episodes. Have short term memory loss, can't think of words, tired all the time, feel like I can't function at work. On 50 mg in the morning and at night (100 mg a day), going up to 150 a day, increasing to 100mg at night. Having problems sleeping at night. I'm getting used to the side effects though. They get better with time, I guess just hang in there. The weight loss is a big plus, I have no appetite at all, I have to make myself eat. Confusion is a big problem, I'm not driving now.”
“After years of being on Carbamazepine and gaining a lot of weight I was switched to Topamax/Topiramate. First to 300 mg then because of G.I. side effects to 100 mg a day and adding 50 mg of Lamictal. G.I. symptoms are gone. I do experience the metal taste, some tingling in my hands and feet, tiredness, blurred vision, some diarrhea but these are few and far between, my weight is stabilized and not many problems with sleep. Any breakthrough seizures I have is usually when I don't maintain my regular sleep cycle, get overstressed, etc. The plus is that I am able to have a normal life. I work full-time, hunt, fish, exercise, have 2 grown boys, hobbies and my husband and I have a very active social life. Inconvenient yes but worth it!”
“I liked Topamax because I never worried about having a seizure. I obtained complete control and the added benefit of helping the migraines, however the MD discontinued it after I had personality changes, severe weight loss and acidosis. ”
- Does topiramate cause hair loss?
- How long does it take for Topamax to start working?
- How long do you stay on Topamax for migraines?
- What not to take with topiramate?
“I was prescribe the Topamax 25mg 2 times daily as a result of severe and disabling attacks of Vertigo. After 3 days of taking this, my memory got so bad that I could not remember if I had even taken my medication 5 minutes later. My mental thought process was totally negative to the point that I was in belief life was over. By the 5th day, I realized that I had become very defensive, aggressive, verbally abusive, and had no empathy nor regards for others. My PTSD was in the danger zone and I had become the monster I had fought daily for decades to control. Two days after totally quitting; which I can't say is recommended for everyone, my head is clear, my memory is normal again, and I am in disbelief that I allowed such a dangerous medication to even be prescribed to me.”
“After day one of topamax I felt strange. Generally sick. Very nervous. Aggressive. And then very depressed. I kept taking them. My appetite decreased as did my energy levels. And I was over thirsty all the time. Some abdominal pains and areas of numbness. Particularly of the face. Mouth. Eyes etc. Then I broke out in massive bruises. Very dark large haematomas on. My arm. I also had bone pains in my lower back and legs. I felt like I was being POISONED to death. So I stopped taking topamax after a month. After two days I already am feeling much better. This should not be allowed on the market. Again. Topamax feels like a very cruel lethal drug/poison.... Don't take it.”
“When I first started this medication it was OK ,I was never told this medicine cause memory loss. It's really bad, I can't remember at times if I took my medicine and places I have been going all my life I can't remember how to get there. Please be aware!!!”
“First off my dosage 200mg twice a day, 26 yo male. It's works, in fact the only anti-seizure medication that has worked for me. I have noticed weight loss of 15 to 20lbs under my natural weight (135 to 155 at 5'11") from being on the meds to off (but that could be lack of exercise). Other than that keeps me going in my daily life. Just don't miss too many.”
“My five year old was prescribed this medicine after he started having breakout seizures on his other medicines. After about two weeks the seizures had not decreased and he started complaining of severe eye pain. A visit to the eye doctor confirmed very high pressure in his eyes. It did not work well for him.”
“I took Topamax for approximately 5 years with little trouble. I did have the metallic taste, and could not drink carbonated beverages. In July 2009, I had to quit Topamax due to a little published side effect, kidney stones. I was on a pretty large dose (600 mg). I had a 9mm Kidney stone and many many small stones. I take Keppra XR now. It prevents the seizures, but I have gained all the weight plus some that I had lost on Topamax, but no seizures or kidney stones.”
“I have been on this medicine for about a week now. I was on it before for about 3-4 years. After the inital side effects which lasted probably about a month the only one that lasted was that I had a lot of energy, which always isn't so bad. Everyone reacts to medicines differently though. I didn't have such a bad experience with this one.”
“I've been on this for over a year. Works very well. I have one side affect, tingling in my feet. I eat alot of greens and bananas to help with that. I lost 45 lbs because of it as well. I take Vitamin B-12 to help with my memory because of the seizure meds...like every seizure meds can affect your memory.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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