Please be careful & watch your symptoms.

Posted , 15 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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  • Posted

    You are INCREDIBLY lucky. Steven-Johnson Syndrome is pretty much the last way I would like to die and I think I'd consider suing those GPs you saw for negligence. I have my own nightmare story on Topamax. I am stuck on it with no way of getting off because any time I try I am left with a pain sensitivity syndrome. This is such a nasty drug. I also nearly lost my job because of it too. I can't remember people's faces anymore or their names for that matter.
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    • Posted

      Hi Jael128, I have still resisted checking the condition out until I know for certain that I am OK, but you know it's funny, I had this feeling of dread for weeks that something wasn't right, we were on hoilday in Greece and it totally ruined my time there because all I could think of that it was something serious, but because the GPs said I was fine you're meant to believe them aren't you??

      I was just pulling my hair out that they just sat back and all said I was fine.  People don't have sore throats for nothing and my husband was getting more worried and mad, but to think I had to pay out privately and go back to the hospital to get an answer.  Hopefully I'll be OK, but it's just a waiting game at the moment.

      Sorry to hear you have problems aswell, that must be awful that you can't come off it, is there no alternative, although I suppose if there was you would have tried it.  I never realised it was such a nasty drug, originally they put me on amitriptyline but it didn't work so that's why I was put on it.  He has suggested something else but told me I can't go on it for at least a month until after my blood tests.

      Hope things do eventually improve for you and they find a way of getting you off them it can't be much fun for you??

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    • Posted

      Thanks for writing back to me and for your concern for me. It sounds like they've caught the progress of the syndrome in time if that's what you've got but it must be extremely worrying for you. From what I know about this syndrome if you are found to have suffered it you should never ever go back onto the drug that caused it. I'd just stay well away from Topamax. It has terrible effects on your memory, verbal and visual. I think my problem with the pain syndrome is more unusual. But as a mood stabiliser topamax has the double function of helping with pain (not sure why) so when you pull it away, especially quickly, you can get awful rebound pain symptoms. I've been a part of this forum for a while and people complain of some pretty awful side effects. I guess that's what the forums are usually used for though!
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  • Posted

    First, I'd love to know where you are because I'm in Leeds and if you aren't too far away, I'd be happy to talk to you personally. Thankfully the sore throat didn't hit me but just about everything else did. I spent a few years trying to get the Drs to believe it wasn't to do with the menopause and no-one would listen to me when I kept saying "there must be something else". I couldn't work normally, totally lethargic and sleepy all the time and then I started not being able to talk properly and I couldn't remember the names of people I knew well. The only reason I lost weight was due to severe stomach problems. The whole thing was a nightmare. I don't normally do sites like this but I feel so strongly about Topiramate and it's side effect and the fact that the GPs didn't pick up on it being the reason for my problems is appalling.  I've been off it for some time now and feel much better. I've learned some tricks about dealing with and preventing the migraines, the most important of which is being careful what I eat - anything with pink food colouring is likely to affect me! I once ate a bag of marshmallows and was ill for 2 days! Sometimes you have to make yourself ill to find out what affects you. Avoid pink food (artificially pink!). I can recommend the City of London Migraine Clinic - they have helped me enormously over the year. Hope you are near by!! 
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  • Posted

    First, I'd love to know where you are because I'm in Leeds and if you aren't too far away, I'd be happy to talk to you. Thankfully the sore throat didn't hit me but just about everything else did. I spent a few years trying to get the drs to believe it wasn't to do with the menopause and no-one would listen to me when I kept saying "there must be something else". I couldn't work normally, totally lethargic and sleepy all the time and then I started not being able to talk properly and I couldn't remember the names of people I knew well. The only reason I lost weight was due to severe stomach problems. The whole thing was a nightmare. I don't normally do sites like this but I feel so strongly about Topiramate and it's side effect and the fact that the GPs didn't pick up on it being the reason for my problems is appalling.  I've been off it for some time now and feel much better. I've learned some tricks about dealing with and preventing the migraines, the most important of which is being careful what I eat - anything with pink food colouring is likely to affect me! I once ate a bag of marshmallows and was ill for 2 days! Sometimes you have to make yourself ill to find out what affects you. Avoid pink food (artificially pink!). The City of London Migraine Clinic have been a great help over the years, I can recommend them.  Let me know if you are nearby.
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    • Posted

      Hi, I'm in York so not that far away.

      I've just had a call from my doctors to say they want the blood tests doing now, so I'm going later today to get them done,now I'm starting to worry.

      It's funny but some of your symptoms are the same as mine aswell, but I hadn't thought about it, I feel very sleepy and lethargic and have memory lapses, but I put it down to senior moments!!!  Only 47 but it happens to the best of us.

      As far as the migraines are concerned, I've tried everything to figure out what causes them and have almost given up, the usual, wine, chocolate and cheese doesn't make a difference, I don't drink much as alcohol does trigger them, but apart from that I haven't got a clue.  I'll take your advice on the pink food issue, anything to help.

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  • Posted

    I'm 57 and I started planning for the menopause well in advance because I'd had years of menstrual migraines caused by hormone imbalance and I realised the m'pause might be hell. Now I don't know whether I've been through it or what because of all the Topiramate side effects. I hope I've made you stop and think about other things that are happening which you might just put down to other things. Do read the list of side effects. Normally, I think people should be careful not to imagine they've got everything on the list but I had about a dozen symptoms which I eventually realised were related to the medication! I'm just angry that the drs didn't notice!  I wonder if you've had your blood test results yet - I hope everything is ok for you.

    I've learned such a lot over the years. For example, when I had a headache, I used to always take painkillers (which did considerable harm and gave me microscopic colitis) but now I realise I could have been addicted to them and I just try to take a calm moment and drink a glass of water to rehydrate me and about 8 times out of ten, the headache does go away. Like you, I don't drink much alcohol because it isn't worth it! Good luck with the blood test results. Best wishes, Lynn

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    • Posted

      Hi Lynn

      As far as I'm aware I haven't had the menopause, I did have a hysterectomy when I was 30, so maybe things will be different for me.

      I have just rang the surgery and thank God the test results have come back negative, I am so relieved, I can't tell you how worried I've been.  What upsets me most is the fact that I only went back to see my consultant because I had a different problem, unconnected to my migraines or the topiramate, that the GPs had also been ignoring and I thought if I went to see the consultant he may be able to help and I just happened to mention about the sore throats etc...  It doesn't bear thinking of if I had left it any longer.  I think my husband and I should be looking at changing our doctors to be honest because they've let me down twice in reality and this could have been so serious.  I think I will look this syndrome up on the internet now I know I'm in the clear.

      I try to take as few tablets as possible for the headaches, I am on eletriptans which I take at the first sign because nothing else works, sometimes these don't work so I take 2 ibuprofen at the same time, which apparantley is the new thinking with the control of headcahes and stopping them coming back 12 hours later.  My consultant wants me to try something else, can't remember the name at the moment, but says I have to wait a month before the topiramate are out of the system.  I shall be more aware in the future of the slightest side effects.

      It's always nice to hear what other people do to control the attacks, I try to drink a lot of water like you, sometimes it helps but sometimes you just have to ride them out.eek

      Rhonda

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  • Posted

    Hello I have suffered migraines since I was 9 years old . I have been on topamax about 5 different occasions and the latest stint I had I was on it for about 4 months I worked my way up to 150mg per day. Previously I had the usual side affects.  Tingling toes at night. Memory loss.  Thinning hair. Weight loss.  But that was about it. Migraines were less severe it was great.

    THE MOST RECENT EXPERIENCE WAS AWFUL............sad it makes me well up with tears because it was so bad. I'm not sure but I have had a pretty stressful sad couple of month's and maybe this made the side effects worse but about a month into taking 150mg I started feeling depressed. Sad.  Tired. Anxious I couldn't stop thinking that I was going to die all of a sudden.  Then in one day I had 5 debilitating panic attacks which at the time I didn't know wat was happening to me I called them death dreams.  I put it down to my life factors and continued taking the pills. Then another month passed I had another really bad attack and I actually told my husband this was it I was dying.  The attack was so bad I was unresponsive In a semi unconscious state. He was yelling at me telling me to breathe properly.  He thought I was being silly so he walked off when I came too I fell to the floor in a crying terrified mess. Thats the day I decided to get off the topamax. COLD TURKEY bad move. .......... Don't ask me why I didn't taper off I was in such a panic and thougt I was fine the last time wen it only took a week or so to taper. It had been a couple of years so I couldn't actually remember. I just thought the quicker I stopped the better it would be. I continued having anxiety felt like I was detached from my body.  I felt different depressed got really agitated easily. Felt like I wanted to cry all the time.  I tried to shrug it off but the constant anxiety about dying made me go to the doc. She instantly put me on fluoxitine / prozac. Of course at the time I didn't realize to tell her I had quit my topamax cold turkey. Because I was still unaware what the withdrawal symptoms were. So for the past week I have been on forums. typing my symptoms into the symptom checker and then it was like a light bulb went on when I typed in topamax withdrawals I pretty much had every symptom that was listed.  Relief! !! Kind of. Now I have the awful exaggerated symptoms from starting prozac. Which has made me feel worse. My only hope is to start to feel better smile so I have called the nurse today to pass the message on to my doc  about stopping cold turkey. ..

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    • Posted

      Hi Emma, sorry to hear about your terrible reaction, I went cold turkey because my consultant said I had to, as the symptoms I was showing could have been a serious condition.  Thankfully my blood tests came back OK and I didn't have any symptoms coming off the topiramax.  Problem I have now is the headaches/migraines have returned, I'm now on the 5th continuous day.  mad  I go back to the GP tomorrow to try a different tablet, can't remember what was suggested now, but feeling nervous about trying anything now after the bad experience with topiramax.

      It's so frustring because those tablets were doing the trick and I was losing weight aswell, which was a pleasant bonus.

      Hope you get sorted and they can find something that agrees with you and that you can come off the prozac.

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    • Posted

      Emma since you have been having migraines from such a young age I wonder if you have ever had an MRI of your brain and neck? Have you been checked for something called Arnold Chiari Malformation Type 1? If not it would be worth talking to your doctor about and looking into. I have it, it's rare, but most of the time when children have migraines is because of this, however is so rate that many doctors don't even know it exists unless they are neurologists. Anyway feel free to ask me any questions if you have any, my name is Valerie

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    • Posted

      Hi, can you explain more about this by any chance? I went to a neurologist about my migraines, but I started getting mine around the age of 11. I didn't start seeing my neurologist however until I was MUCH older.

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    • Posted

      Oh goodness, I just realized this is an old post! If you see this and reply, that would be wonderful, if not, thanks anyway!
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