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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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