Please be careful & watch your symptoms.

Posted , 19 users are following.

After 35+ years of headaches/migraines and screaming at every GP I could find I finally got to see a neurologist at the Nuffield and have been on topiramate for 5 months.

I had a few side effects to start with like tingling fingers, face and heels but that was bearable, and of course the weight loss which is an added bonus, but the main thing the migraines had all but disappeared.

After 2 months he increased my dose, can't remember the strength, but I went from 4 a day to 5.  I then noticed a different problem occurring but didn't associate it with the topiramate.  I started to get a sore throat and bad taste in my mouth and infact my mouth generally felt horrible, normally these symptoms would mean I'm coming down with a cold so I ignored them.  Well after 3 weeks it didn't go away and over the course of 2 weeks I saw 3 GPs who all said there was nothing wrong, to keep me quiet one did some blood tests and the other prescribed me some gastric tablets.  I knew something wasn't right because we all know our bodies and we know when there is something wrong.

In the end I checked the side effects for topiramate on the internet and it said you can get sore throats, so as an experinment I dropped 1 tablet a day and the symptoms started to improve slightly but not completely.  After 8 weeks I'd had enough and went back to see my neurologist and told him the story, within 5 seconds he was shouting over me and demanding I stopped taking them immediately, which you wouldn't normally do, he was very concerned and told me I've probably got the start of a condition called Steven Johnson Syndrome which is very, very serious.  I was totally shocked that 3 GPs hadn't put 2 + 2 together when it states on my records what medication I am on.  He has even told me NOT to look it up on the internet as I might be too upset and worried and I have to wait 4 weeks before I can have a blood test to see if I am OK or not.

So really the reason I'm writing this is please be aware of your symptoms and go and see your specialist or whoever prescribed them in the first place, I just have the long wait at the moment and also the problems of going cold turkey with the topiramate.

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38 Replies

  • Posted

    I have been on Topamax for 3 years now, the generic of course. Anyhow I been getting these terrible sores in my nose. I been thinking its from runny nose since it runs all time now. My list of symptoms now has grown. I could go on but wont right now.
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    • Posted

      Hi Kivalina

      If I was you I'd go and see your GP/neuro and think about coming off them.  They are dangerous and have left a lot of of people with a lot of short and long term conditions.

      The sores maybe something and nothing but they could be the start of something more serious, please get an professional opinion and even a 2nd after that.

      Good luck


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  • Posted

    I am so glad I came across your post I cannot thank you enough. This is my story and you will understand why I can't thank you enough...

    I am a 33yo female... I have been getting pretty bad headaches/migraines and I have also gained 70lbs in 3yrs. So my Dr started telling me about Topamax and how it could help with my migraines and weight loss he prescribed me Topamax 6 weeks ago. I have only been on a low dose of 25mg per day and I have been taking it at night as I read that it can make you a bit foggy. Well, I was so impressed with this little pill. Not only did my headaches go away but my appetite was cut back and I event went from smoking half a pack of cigarettes to only 3 or 4 a day. I lost 13lbs in 3 weeks and it was easier to make healthy eating choices and easier to cut out sugar. well about 3 weeks into it I started to develope the tingling in my fingers but it only lasted for about a half hour every morning. I figured compared to all of the positives I could deal with that side effect. Then days later I developed what I thought was pinkeye. I went to my Dr and the walk-in's 3 different times bc nothing they gave me worked! my eyes were so bad! it wasn't until they gave me a steroid eye drop that my eyes started to improve. Then I developed a sore throat. so they assumed I had caught some type of viral pinkeye that was manifesting like a cold. It lasted 2 weeks. Finally got over that and fell with a severe UTI. I never get UTI's. Last time I had one was as a child. Then about a week ago my mouth started hurting. The only way I can explain it, is it felt like my lips were severely sunburned and my mouth felt sore. 3 days ago I developed a blister inside my lip. Sadly i had eaten soup that day and thought i burned my mouth bc it was too hot. Until yesterday, I woke up with 1 more blister in my mouth and a sore as well in the back of my mouth.. At this point I started freaking out. I finally started to do my own Google research and started to see this Steven Johnson Syndrome pop up. I am convinced I have the beginning signs of this. including what the Dr's thought was regular pinkeye I think was a manifestation of this as well. I called my Dr yesterday and explained everything. He told me to immediately stop taking the Topamax and take benadryl for the next week and go to the ER if my symptoms get worse because it is the beginning signs of Steven Johnson Syndrome. So yes, now now here I am day 1 of being off of this Topamax. What I thought was a miracle drug turned out to be horrible. It was your post that I came across that prompted me to call my Dr and advocate for myself and it turned out I was correct. Sadly, no one pieced it together either all the times I have been to the Dr's this past month with all of the signs. So yes, be well aware of your symptoms and keep a close eye and advocate for yourself if you have to. Now I just pray as I sit here with sores in my mouth, that this doesn't get worse before it gets better.

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    • Posted

      Hi there,

      I'm so sorry you are having such a bad time of it, but glad that in some way I have helped.

      I hope your GP is arranging a blood test to eliminate SJS, because it is so serious.

      I was devastated that the meds didn't work for me because they were so good with eliminating the migraines and the weight loss, but sometimes if something seems too good to be true it often is.

      I hope you continue to feel better and recover and can maybe find something else to take. I personally have abandoned all meds because nothing works, so I just make sure I have plenty of triptans wherever I go and they keep me sane.

      Keep us updated

      YL x

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  • Posted

    I have the tingling in my feet and hands, sometimes it gets painful. i can't drink anything other than water or else i get a terrible sore throat. Even one drink, gives me a sore throat for 2 days. I could deal with that, but I'm it has damaged my large intestine. I'm in so much pain and tests show nothing is wrong with me. I haven't left the house in two months. I have nowhere to turn to for help....

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  • Posted

    hi everyone.. so my doctor actually put me on this med for weight loss, she explained what it is actually for but that it does help with weight also.

    she started me on 50mg a day then up & up from there BUT i only made it to day 4! i felt like that was wayy to soon to get the symptoms i got.. the first day i took them i actually ended up sleeping the rest of the day/night, it was like a sleeping med it felt like, the second day i was tired again, slept but more of a nap & the tingling of feet & palms happened but it only seemed to happen when i would stand up, if i was laying i was fine. well that night i ended up waking up to the worst dream like my heart was pounding & i was drenched in sweat, ive never had that happen but that was all still manageable (early symptoms but figured id deal) Ok so 3rd day taking them then i couldn't even sweat anymore, im saying its been hot & my body & face are absolutely dry also my right wrist started getting stiff, would happen off & on but then it was happen so often that i looked to see if that was a side effect & of course it was a bad one, still me still thinking maybe its not to do with the meds i took it another day & i started then getting left abdominal pains which at that point i was just exhausted by it all & stopped taking them, well that landed on a Friday & i plan on calling my doctor on monday to explain what happen, now everything is better (oh ya let me add the 2nd day headaches started.. ya weird) except my lower abdominal is still in this weird cramp pain & my headaches are turned into migraines but i dont understand how its getting worst if im not taking it no more.. ive tried looking up if others have had such symptoms so early on but cant find nothing & i didn't search any symptoms until the wrist issue cuz i hate syking myself out.. could that have really been bad effects or just a change because its a new med & things were changing.. idk..

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    • Posted

      Hi Aleshia,

      Sorry to hear you have had all these weird symptoms.

      As I have said in earlier posts, this medication is not good and most of the symptoms you have described I and many other people have had.

      If you want my advice, tell your doctor you want to try something else and leave these well alone.

      Hope you feel better soon

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