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Welcome to the Topamax Forum

I used Topamax for about three years. Initially, it seemed to work. It made me feel a little tingly in my legs at first, but eventually that went away. I lost a lot of weight, about forty-five pounds by the time I stopped taking it.

Side effects started to become noticeable about a year after I began taking it. I could not concentrate in school and my grades in some subjects dropped from ‘A’s to ‘B’s and ‘C’s. My migraines were coming back more and more frequently, and with greater force. I was forced to quit sports and other extra-curricular activities.

It was difficult to quit taking Topamax because I got withdrawal symptoms. For the next two years, my grades have improved to straight ‘A’s and I am able to do much more. I currently take Feverfew herbal suppliments, which seem to help a little more. So far, none of my medications have been effective in preventing or treating my headaches.

Topamax for me was like evil in the form of a pill. I became a totally different person and not a nice one. I couldn’t sleep, had crazy thoughts, couldn’t concentrate or focus on anything, started losing my hair and really began to think I was going to lose my mind. The day I got up from the couch to get something only to forget not only what I got up to do but also my name and who I was was the day I flushed my Topamax down the toilet. Now, I know that’s not the proper disposal of medication nor the appropriate means to wean off. I was having a melt down after all. I called the doctor’s office shortly after the flush and here’s what I said. “Yes, this is (me), date of birth (yadda yadda). I just flushed my Topamax down the toilet because it’s making me crazy.” This is what I heard on the line…”………….” silence! ha! So then I said, “Can you call me in something else?” Yep, had to be seen by the doc for that one. No more Topamax for me. Within 2 weeks of going off I was back to being sane once again. Bummer is, I never even experienced the weight loss side effect. All that and still jiggly thighs!

Topiramate (Topamax) is a wonder drug to many patients, helping them get a foothold on their Migraine attacks, sometimes for the first time in their lives. Each person is different, and how they react to any medication will be different too. Furthermore, that reaction can change over a period of time.

I too had some fairly serious problems with topiramate, including pH issues and staghorn kidney stones. The tingly buzzing sensation in hands and feet, and cognition difficulties etc were nothing compared to those two life altering events. At the time kidney stones were considered a rare side effect, but now we know that isn’t exactly the case.

The topiramate did help my Migraine issues though – not a great deal, but some. I wish it hadn’t made me so terribly sick.

Vital to note: Topiramate is a medicine that should never be stopped cold-turkey. This can have disastrous results. If you feel you must stop the medicine, contact your doctor first for instructions how to titrate down (slowly lower the dosage over a period of time) safely.

Additionally, many people who have initial side effects are often titrating up too quickly. Often backing back down a smidge, then upping the dosage much more slowly will yield better results with fewer problems. As always, you shouldn’t make any changes in your treatment without consulting your doctor first.

I’ve been giving topamamx a second go. I’ve been back on it for over a month now.

It hasn’t went so well. I had been up to 100mg in a split dose but I woke with double vision and determined that I would reduce the dose.

I’ve been sitting at 50mg and am not sure what to do.

Can I see any results with 50mg?

I won’t be able to go any higher, as this is where I got stuck last time as well. Should I keep on it a while longer or just taper off? I’m rather not sure what to do at this point.

milo,

The very first and most important thing is to talk to your doctor about the double vision to make sure that it really is a side-effect of the medication and doesn’t need to be dealt with as a separate issue. Also, because you seem to be having trouble with the topiramate. This is vital information for him/her to help you. Topiramate can occasionally unmask other health problems that might not have been noticeable before treatment.

You ask, “Can I see any results with 50mg?” There is no simple answer to that. Some may, some will not. Usually the therapeutic dose that results in the very best outcome is 100 to 200 mgs per day, but that won’t necessarily be what everyone can tolerate. This is very individualized and all Migraineurs are different. Have you seen any results yet? Are you taking 50mgs split throughout the day, or just once?

Since increasing the dosage too quickly can cause increased side effects, you might want to ask your doctor about increasing it more slowly. Unfortunately, some do not recognize that certain patients are more sensitive to these changes and will not want to let you do this. If that is the case you can always try asking him/her “will it hurt me to increase it slower?” If their answer is “no” then you might consider asking them to try taking things much slower to see if it will help you.

For instance – consider the fact that you were asked to increase the dosage from 50 to 100. That is a 100% increase – very steep! In an interview with Migraine.com’s Teri Robert mentioned here http://bit.ly/f2ZFti Dr Stephen Silberstein noted that success is achieved best by very slow titration. Starting at 15 mgs once daily, then slowly going upward from there, splitting the dose. Perhaps you might want to ask your doctor to try adding 15 mgs to the 50 you are currently taking and see if you are better able to tolerate that. Give yourself a chance to sit at that level a while (perhaps weeks even) before considering whether it is a failure or a success and determining where to go from there.

I know Migraine attacks are horrible to consider enduring for weeks longer, but patience is the key to finding a good preventative, and worth the investment of time and yes, even the pain. Yes, it may take several or even many weeks to try something, but if it is successful then it is a very good investment. If it fails, it was still a very good investment because you know what won’t work now, and that is something you didn’t know before. You have made progress.

Another thing to take into consideration is the action of topiramate on the rest of the body. It may deplete or otherwise affect things like vitamins needed by our bodies for health. If we are deficient in these things, our health can suffer terribly. Some examples of vitamins the University of Michigan Health System http://bit.ly/hLPYuo says topiramate depletes include: Vitamins A, B6, B7, B12, D, E, K, and L-Carnatine. Depletions of these vitamins are why some of us have side effects to topiramate. As a result, some of the best doctors will monitor for your vitamin status throughout treatment, especially if you are having side-effects that may be attributable to depletions. Some will simply encourage patients to take a good multi-vitamin. For some of us this is not a good idea, as taking certain vitamins (like Folic Acid) can mask other deficiencies (such as B12) which can cause its own set of serious neurological problems. This is one of the problems I dealt with and one of the reasons I find it so terribly important to tell Migraine patients.

Off hand, I don’t know of any vitamin depletions that would expect to cause double vision, but I encourage you to talk to your doctor about your questions and research for yourself. The link I’ve provided here is a fabulous place to start…

Has anyone heard about Topamax affecting the thickness of the uterine wall? I was told by a nurse (when I went in for my stimulator implant-trial) that I should be cautious with using Topamax, and that my doctor should order a sonogram after I’ve been on it for 6 months to make sure it’s not thickening the wall of my uterus. I’m in my mid-20′s, so she said it’s really important to keep an eye on it. However, I haven’t found anything related to this online. Has anyone else?

Jamie,

Nobody has ever told me this personally, nor have I heard it elsewhere – might be a great question for one of our physician experts! At any rate, I will add that I did have marked and fairly severe uterine lining thickening. It was around the time I was taking Topiramate, but I’m not sure that was the cause. In fact, I already had many reproductive issues well before I ever tried the drug. It’s a very interesting thought though. Something well worth looking into I think…

Ellen,

If you don’t mind me asking, how did you know/find out that you had uterine lining thickening? It’s frustrating not knowing what really to look for or who to ask. How would I go about asking one of the physician experts?

Jamie,

I had an ultrasound done that diagnosed the thickened lining. I had other problems for many years, and many ultrasounds etc. There is a specific type of ultrasound done to Dx this type of problem. It’s a little more difficult than a normal ultrasound, but it’s not bad.

Here is the link to ask one of our experts a question: http://bit.ly/fZjuv6 You can also find the link by going to the tabs at the top of the page and hovering over Community and Blog. A button will appear for Ask The Expert you can click. Read the instructions, then ask away!

Topamax is evil, plain and simple. I’ve had migraines for 22 years, and was prescribed Topamax about 6 years ago. After being on it for 2 years and experiencing the typical side effects i.e. numbness/tingling, having a hard time thinking of the right words to use, weight loss, etc., I developed kidney stones. If I had been told that kidney stones were a potential side effect I would NEVER have started Topamax. For 4 years I dealt with kidney stones, passing one 6mm, and other, smaller stones. All resulted in excrutiating pain, the likes of which I had never experienced. The final straw was in February 2010, I had such a god-awful attack of a stone. It was 8 mm! For those who have never had kidney stones, that is very, very large. Probably the size of a BB, but when you think about where it needs to come out of, it is big. That attack took me to the ER, where they first pumped me full of Dilaudid (migraines have made me immune to morphine) and then sent me home. Since I couldn’t stop vomiting or keep any food or liquid down at home, back to the ER I went. The next day I called my urologist who immediately set me up for surgery THAT day to have the stone removed. Not fun. For 5 days afterwards you have a tube in your ureter to keep the area “open” for any fragments of stone to leave. I sat on the couch for 5 days until the day the stent was removed. At that point, I was convinced the stones were caused by Topamax, as I NEVER had a problem with them before I started that drug. I promised myself to immediately get off Topamax, which is what I did. Fast forward 6 months later to my checkup at the urologist’s office…..NO MORE STONES!!! Not only had I not formed any new ones, but the remaining stones that WERE in my kidney were GONE! Poof, disappeared without a trace. If that doesn’t make you a believer, nothing will. I changed nothing as far as medications, vitamins, the amount of water I was drinking, etc. The ONLY thing I did was come off Topamax. My doctor was actually stunned, he did not know what to say. I told him my thoughts and that I had done some research on the matter and he asked me to send him the information I found, which I did. I will never take Topamax again.

I along with many of you will never take Topamax again. It all started at 5am on my 45th birthday. I sat straight up in bed with the energy of a 16 year old. It was the most amazing energy I had ever felt. After doing everything but painting the house I finally made myself go to bed well after midnight that day. That was the good now for the bad…..when I woke up after that energy spurt I had the most horrible migraine I had ever experienced and I’ve had them for probably 20 years or so. After about 10 days of this and emergency visits to my primary doctor she sent me to a migraine specialist who put me on Topamaz. My migraines went from horrible to just cut my head off I can’t handle it any more! I really figured it would get better after a while. The specialist even doubled my medicine assuming it was just the cycle of the migraine. I was sent for an MRI which showed 4 lesons. The doctor told me that wasn’t unusual considering my history of migraines. My doctor also told me that the increased energy is not unusual and often preceeds a major migraine episode. My brother who had been given Topamax for headaches told me they made his worse like his head was going to explode. Finally at 6 weeks of taking the Topamax I cold turkey quit. I just figured I had nothing to loose! I called my doctor to tell him what I had done and I thought there was a connection between the increased severity and the medicine. He agreed that I was probably having an adverse reaction to the medicine especially since my brother had had the same reaction. For me Topamax took a horrible migraine and turned it into a life or death situation because I seriously just wanted to die! In about 24 hours or so it was over just a normal headache. No migraine at all. I wish I had quit earlier it would have saved me alot of pain and suffering. I have wanted to tell this story for almost 2 years and I’m happy to finally have the opportunity to do just that!

I had a bad reaction to Topamax as well. I started off at 50mg and slowly ramped up to 150mg.

Other than wanting to sleep all the time, I got the tingling like others have mentioned, unfortunately it wasnt in my hands or legs…it was in my face.

At first the doctor and I didnt realize the reaction was from the topamax as allergy season had just begun. I was put on an allergy medication and the tingling intensified over the next week or so. It was extremely uncomfortable and I felt like I was on some illegal drug. I became distracted and found myself drifting off when I really needed to pay attention…fortunately for me, someone was in my truck with me and screamed a warning at the last second and I was able to recover and not roll my truck.

The tingling in my face stopped as soon as I stopped taking the Topamax. It did nothing for my migraines.

I wouldn’t assume topamax wont work for you but if you do start taking it or anything else, pay attention to all changes, even ones that you or your doctor dont think are related to the drug.

I was having 9-plus headaches a month and the Dr. put me on Nortiptyline(20mg)a day. I went down to 4-5 headaches a month.He wanted to try Topiramate(Topamax)to reduce the # of headaches further. To transition me from Norriptyline, he decreased Nortiptyline to 10mg a day and Topamaz 25mg a day. I started this about 6 days a go and I feel like a zombie with a swollen head. Not to mention my wife says Im very irritable and I’ve already had one migrane during the transition. Not sure if Im paranoid or have I had shortness of breathe a couple of times. I called my Dr.s office and the nurse said I would have to let my body adjust. Is this what I have to look forward to with Topiramate?

Hi everyone, first of all hope you are all feeling well as you read this!

I just wanted to post a quick response to some of the posts I have just been reading. I am very lucky to have a very talented neurologist who looks after me very well. I take a combination of anti – convulsion drugs, and topiramate (Topamax) is one of them.

I have been on Topamax for 6 years now and it has given me back my life! I appreciate Topamax isn’t for everyone and I have to carefully manage my migraines which can still be debilitating. However in conjunction with diet/exercise Topamax has transformed things for me, however I have a very talented doctor who has monitored over the years when to incraese my dosage and referenced the most up to date research in this area as it is a relatively new way to treat migraine, I also take gabapentin (daily) and zomig in acute attacks.

Blurred vision, weight loss and tingling in my limbs were for me temporary symptoms. I can also sympathize with memory loss, but these symptoms were nothing compared to the daily crippling agony of migraines that plagued me before. My neurologist has also told me stories before of people halcinating on topamax – so as i said it’s not for everyone!

….But just wanted to post a message of hope for those of you trying Topamax for the first time. Hang in there, increase the dosage slowly and be patient. Find the dosage that works for you.

Hope this was in some way useful. Good luck!