Topamax

Description

Used use as an antiepileptic drug and to relieve chronic pain symptoms. Supplied for oral administration (25 mg, 100 mg, and 200 mg tablets). Topamax (Topiramate) is a white crystalline powder with a bitter taste.

New low dosage Topamax Sprinkle Capsules were released onto the market in mid 2001. They are primarily for paediatric use. They are micro-encapsulated and primarily used to sprinkle on to food for child patients or others who have trouble swallowing tablets.

Side effects

(Don't be unduly alarmed. All drugs cause side effects for some patients)

Warnings

(These are standard cautions but may not apply in your case)

"Patients using.. Topamax should call their doctor if they experience blurred vision or eye pain because the drug occasionally causes a type of glaucoma".
Stopping the drug immediately seems to cure the side effect, but if left untreated, it can lead to serious eye problems, including permanent vision loss. This warning came in letters mailed direct to physicians who prescribe Topamax.

Comments

Remember - RSD/CRPS is rooted in the nervous system. The discovery that epilepsy drugs may have beneficial effects for RSD patients does not imply that they have epilepsy.

I currently take Topamax (a great alternative to Neurontin). This is an anticonvulsant. This is also a great medication for anyone who has seizures - it is an adjunctive medication, which means it must be taken in conjunction with another anticonvulsant for seizure control. It has very few adverse side effects. I only experienced some slight tingling in my hands that went away after the first few days, I also have lost significant weight (which I needed due to the weight gain from the Neurontin). Since Topamax (Topiramate) is an appetite suppressant, If you have any weight loss concerns, this may not be a good drug of choice. Also very important - anti-convulsants cause sensitivity to sunlight - be careful in hot weather and wear your sunblock. Trish - Pennsylvania, USA

I have a new problem that has come up the last 2 1/2 weeks shaking all over inside. It's like being on a vibrating bed. My doctor said it is a hyperactive nervous system due to the RSD/CRPS. They some times see it but most of the time in MS patients only. He told me to get the word out that the treatment for this is TOPAMAX, but it takes awhile to get working. Kathy - North Carolina, USA

TOPOMAX WARNING
A warning for those Topomax users who are having trouble with eye pain and blurriness:
Your eye pain and blurred vision is a reaction from the Topomax. Your eye pressure is high and if it stays high for a short period of time you will damage your optic nerve and become blind! I am not joking. Last week my husband started using Topomax. 1 week later he almost lost his eyesight as a reaction to it. The Topomax raised his eye pressure to the high fifties (normal is around 10) and no one knew how to treat it. Fortunately he was sent to the Mass Eye and Ear Infirmary in Boston who is currently researching this side effect. His still cannot see and they are hoping he will regain his ability to see within 2 weeks.
If you start using Topomax and feel irritation in your eyes no matter how minor stop using and go to your doctors immediately!!! Not many doctors are aware of this newly discovered problem so refer them to the Mass Eye and Ear Infirmary's research. Valerie - Boston, Massachusetts USA

Aloha! I have bipolor and gained weight with my meds. My doc put me on topomax as an additive to my other meds and also said it would help with the weight. The first time I tried it I got paranoid and couldn't remember things, like my pin number on bank and gas cards. I took too much too fast. So I am trying it again. If I start forgetting my pin numbers and what I had for lunch I'll know its not for me! Melanie - Haiku, Hawaii

I saw the pain specialist today, and I asked him about trying Topamax. He said it is not yet licensed in the UK as a treatment for Pain, but he is more than happy to let me try it. I can start it as soon as my GP gets the letter from the Consultant - so I now have something to hope for and I am very pleased about that. Catherine - Huddersfield, Yorkshire, UK

I started on Topamax 200mg 2 years ago for Migraines before I was diagnosed with RSD. It works great at controlling the Migraines I was suffering from all the time. But I still have RSD though. So, tell anyone with Migraines, try Topamax. At least one problem is under control! Lois - Arizona, USA

I was on Topamax for a month recently. I can really relate to what Ron from Denver said in his statement, "The Topamax made me just about go nuts. It affects short-term memory, so I tended to forget what I did yesterday, and the slightest little thing would upset me." I went bonkers on that stuff, too. While it did help with the pain, the side-effects were too disturbing for me. Thanks 'Ron from Denver' for helping me know that I'm not the only one that can't tolerate Topamax. While it may work for some people, I'll pass on it! Tina - Kailua-Kona, Hawaii - Tina has put her feelings about Topamax into a poem. To read it click here.

My husband was on Topamax for a little over 3 months and was so sick from this medication which still affects him today. He could not walk, he was dizzy and his eyes hurt to the point he had trouble seeing. It made him paranoid so that he could not go out in public places because he felt like everyone was moving in on him. He could smell the Topamax coming through the skin pores which made him anxious about other people being able to smell him. When we started to taper him off Topamax he started feeling better within a few days. But this medication has affected his sinuses so much that he can still smell the Topamax in his sinuses even though he has been off it for about 3 months. We are concerned that it may have done some permanent damage to his sinus and wonder if anyone else had the same problems. H.W. - Elizabethton, Tennessee, USA

I have had RSD for a little over two years now. I have been on several different types of drugs. Neurontin didn't work at all. So currently I am on Topamax and my doctor just started me on Gabitril. I woke up this morning and I still felt dizzy, but I also noticed that I have no appetite whatsoever. Is this one of the side effects? I know it is with Topamax, but at least I am hungry normally by lunchtime. I'm not today. Paula, New Jersey

I've been taking Topamax for about 3 months now. I had been taking Neurontin for 2 years and just couldn't stand the weight gain. So far I have lost the weight (27 pound in 3 months), but I am not so sure I am liking the side effects. I have eye pain that comes and goes and I have a strange sinus smell that will not go away. I have lost my appetite completely, including my love of chocolate. It is helping the pain, like the Neurontin did, and I don't have the added weight, so I'm thinking I should live with the side effects, unless someone knows of another drug that is just as effective but without the annoying side effects. Gina - Placerville, California, USA

I've been on Topamax for 3 days now for bipolar, in place of Neurontin I also take Welbutrin. I am so sick. I'm weak, dizzy, out of breath. I just feel awful. But I do feel better day by day. I still don't feel well but, today, I can sit up. I've read all day, and don't see anyone else with these side effects. I'm just a bit worried, but, I suppose if I'm getting better day by day, then, I'll be OK. I have no appetite what so ever. And I used to drink Dr. Pepper all the time, such a bad habit, but, haven't drank one in 3 days. I can see why everyone loses weight. That's the good part I guess. I hope it works well on my bipolar. Christine - West Plains, Missouri, USA

I have been on Topamax for about a year. I found that I lost weight, however, you must adjust your full dose accordingly. To make that clear, Topamax doesn't work for weeks and you have to ramp up to full dosage for proper effect, in any event, Topamax can and does have some weird effects on most. Once you reach full prescribed dosage and you are overweight, after you loose weight you must scale back on the dose, I found out the hard way without realising it, I was overdosed and showing the effects, memory loss and just generally acting goofy, or out of character to be polite! I am taking 150 mg per day, I was taking 250mg at 250lb's, now I am at 200lb's. Only thing that I really have a problem with is that my eyes really burn and I have blurred vision from time to time other than that, I get along with it or it gets along with me. Dave - British Columbia, Canada

After using 25 mg. for 1 night, I had blurred vision, eye pain and was very weak. I had undergone several tests to see if I had had a mini stroke. They showed negative; but how accurate are MRI's really? I am diabetic. And I do have permanent occipital nerve damage (Right)from a car accident. I will not continue using this drug because of the side affects.
Wanda - Richmond, Virginia, USA

I took Topamax for just over a year for migraine and seizure control. The side-effects while I was in the ramping-up period were quite annoying: dizziness, tingling, memory loss and general goofiness/confusion. However, after reaching full dosage (125mg/day)I had fantastic results, with only a bit of agitation, but no pain relief for chronic injuries whatsoever.
At the beginning of 2003, my neurologist switched my medication to Depakote
ER, stating that there was much less chance of my sight being affected adversely on this than with Topamax. I have been able to find no info regarding Topamax affecting sight, but, I went ahead and changed meds, with negative results. Barb - Jacksonville, Florida, USA

Just wanting to share my Topomax side effects with everybody just in case they are thinking of using it. I have been on it for about three years, 300mg / day to control seizures. I take other meds as well for the same thing. I enjoy my meals, have a large apetite and have probably gained 25 lbs. since I started taking it. (So much for weight loss) There is definitely some burning to the eyes occasionally and also occassional dizziness. My memory isn't as good as it used to be but my seizures are controlled. I am willing to take the effects in order to be seizure free. Alan - Hamiota, Canada

Today is my last day for taking Topamax for RSD. I had worked up to three 25 mg. tablets per day and experienced an almost total loss of appetite, nausea, and dizziness. The weight loss was dramatic; I went from a size 8 to a 4 (not good since I am 5'7") in two weeks and I am desperately trying to gain weight but still losing. I have no muscle tone left. The doctor should never have prescribed topamax for someone who was already thin. I also experienced short term memory loss and personality changes. T Callan - USA

I atarted Topomax and went with a higher starting dosage than prescribed... BIG mistake. I lost my ability to reason, I was very confused, cried when I realized I was unable to remember minor things such as what I was mailing and to whom. I was at a loss for words when trying to form a sentence. I was supposed to start at 25 mg for 1 week, then increase 25 mg weekly till I was up to 100 mg within a months time. I was in such a hurry for relief I thought it would work well ( illogical logic) to start at 75 instead of a mere 25 mg. I was extremely disoriented, very emotional, and seen the wisdom of listening to 'doctors orders'. Word of warning, start slowly, build up to your prescribed dosage, I learned that too much is not a good thing. Libby, North Carolina, USA

My husband Paul suffers long term neuropathic pain all down his left side and on top of his morphine has tried Gabapentin, Pregabalin and Tegretol, all of which had bad side effects. He started on Topamax at start of the year and now takes 3 x 25mg a day. If I don't put the food down in front of Paul he really isn't interested in eating - and his love of puddings seems to have disappeared - he also cannot seem to concentrate and gets anxious following me around the house - and also has become moody which he never has been. Thanks to coming across this website I now know he is suffering with side effects from Topamax, but will have to see if the pain control outweighs these as I am currently living with a different personality! Judy - Maccclesfield, Cheshire, UK