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.

3 likes, 38 replies

Report / Delete

38 Replies

Prev Next
  • Posted

    I don't know if this will help you ladies, but I hope it will. My name is Valerie. I'm 36, and have suffered from migraines and trigeminal headaches for 11yrs now. Because I have multiple types of headaches and because trigeminal headaches are so severe, I spend periods of time where I will have these headaches daily. However when my neurologist does manage to get them under control, the most successful medications for me have been the following two, carbamazepine as a daily preventive, and sumatriptan as a fast acting emergency aid when I feel one of my triggers, for example. ... sharp pain behind my right eye, than I take it right away and it can normally prevent my headache from getting bad enough to put me in the hospital. I know my situation may be a little different because my headaches are due to a brain compression, but I figure if these migration meds can help even me, than maybe you may have some luck. Also they didn't cause the crazy side effects that topomax did for all of us. With the carbamazepine, for about the first week though I did have some visual and spacial disturbance, I felt like I had drank a little bit too much even though I was sober, and my words were even slurred, but it went away completely, and was worth the temporary discomfort because it's done so much for me.

    Report / Delete Reply
    • Posted

      Hi Valerie, thanks for your comments.  Unfortuntately I have nowhere to go now as I have been completely let down by my GPs, (3 of them) and I have no trust in them, also my neuro has even washed his hands of me and not contacted me in 18 mths after he was supposed to.  There are no other neuros in this area so I feel I have been abandoned, I am just trying to self-medicate and try everything and anything I can find conventional and complimentary.  I haven't even had an MRI in over 40 years of having headaches/migraines.  I would love to try some different prophylaxis but as I said I don't want to see the GPs again.

      Glad you have found something that helps though. 

      Report / Delete Reply
  • Posted

    I knew it wasnt me!! My mom said it was because I wasnt moisturizing mynhair but Im beginning to go thin out in the back of my head and it's not okay and I want to get off of the medicine but my mom probably wont let me. I need help!! Please!!

    Report / Delete Reply
  • Posted

    Ever heard of anyone complaining of SEVERE occipital pain and feeling of ice water running down the head ? I've been seen by every specialist known and test after test they don't find anything so they send me somewhere else since Jan of 2014!!! I've had limited neck mobility jaw pain this occipital pain I thought was the worst pain you could feel until the ice water feeling now the past few months have been pure hell ... I have been on topamax now trokendi for close to 9 yrs it's a nightmare to ween off of the few times I've tried so Doc just assumes I really need it so I stay on it even w the dumbing me down affect , I never gave it a thought that maybe some maybe none but idk maybe some of what's going on past 3 yrs is linked ?!?

    Report / Delete Reply
    • Posted

      Hi Season

      I must admit never heard of your symptoms before, but maybe it's time you had an MRI or CT scan, has anyone ever suggested it??

      As far as I'm concerned Topiramax are deadly and I wouldn't recommend them to anyone, I think you need to try and wean yourself off them, even if you're symptoms are worse at the beginning

      Report / Delete Reply
    • Posted

      I occasionally get that kind of feeling but rarely and I'm not sure where it's coming from. I have both an hemangioma and arachnoid cyst that causes some mass effect so maybe it's a nerve that creates that water feeling. That's what I've chalked it up to. Mine doesn't hurt though, it just feels like it's running inside in a slow stream inside your head. Weird I know. 

      Report / Delete Reply
  • Posted

    Hey Guys I know this post is from Years ago but i am just desperate and hoping  There's someone else out there I can just talk to who has gone through the Side Effects of Toperamite l. I just need someone to talk to who personally knows and understands what I am going through.Anyway my Neurologist put me on Toperamite Last week on Tuesday for Severe Migrane Headaches.Anyway the plan was to start on 25mg once a day at night and slowly increase my dose every week,and  the target dose was for me to be on 50mg twice a day.Anyway I only managed to take it for 5 days from Tuesday Night to Saturday Night before I started getting side effects.First side effect that I had was severe Terror Nightmares and Anxiety Attacks.I have never suffered from an anxiety attack ever in my life until I took this medication.And then one of the nights I woke up to my pillow completely covered in blood coz I had a terrible nose bleed whilst I was asleep.And then the weirdest Side effect started from Absolutely No Where I started having severe fears and worries that I was going to die and live my kids and husband without a Mommy or a Wife,It honestly sounds crazy I know but believe me I have severe regrets of ever taking this medication. I also have been experiencing severe heart pulpitations especially when I am anxious about my family losing me.And my other side effects are ZERO APPETITE,Sudden involuntary twitching (especially my toes and feet) & Sleeplessness.Anyway by Sunday Morning It hit me that maybe it was the new medication that I had just started taking.So I decided To go on my Mims (Medication Database that tells you all about the Different Medications out there) to read up on EVERYTHING  Toperamite(coz I am a Registered Nurse) Anyway I am NEVER EVER GOING TO TAKE THIS EVER AGAIN.Anyway today is now day 3 since I stopped taking those pills and I haven't 100% gotten back to my normal self. I talked to the Neurologist and the Pharmacist about how long it will take for the medication to be completely out of my system and they both told me to give it at least a couple of days. I honestly don't understand how a tablet with so many Terrible Side Effects and so many Bad Reviews is even still allowed to stay on the Market.it truly Baffles me but I guess maybe they wayed the pros and cons and I am assuming the Benefits Trumped The Gazillion Side Effects.Anyway would Love to hear from anyone else out there who has had or knows someone who has gone through any Side Effects with this medication.

    Report / Delete Reply
    • Posted

      Hi Chloe

      It was me that started this discussion and I can understand exactly where you are coming from.  It is an awful drug, that is why I posted my story and there are many more other people doing the same.  There are plenty of people who have minor symptoms and I guess they think they are worth tolerating to rid themselves of the migraines, but the majority of us are in the other camp.  

      I had tingling in my face, particularly the lips, aswell as the sore throats and bad taste, which my neuro thought could have been the start of SJS.  I also had memory lapses and just felt as though I wasn't in the same room as everyone else.  I was on them about 5 months but had to come off immediately because of my neuro's concerns, which you are not supposed to do, so that left me with other problems.  Thankfully all is well now and I am on different medication.

      All we can do is spread the word and let people know what this drug is like so they can make their own informed decisions.

      Hope you're feeling better soon and can get back to normal smile

      YL

      Report / Delete Reply
    • Posted

      Hi I feel your pain, I was prescribed this TERRIBLE drug a few months ago for migraine. I only wish I had done some research prior to taking it. I like you lasted 6days with 25mg at night my side effects, mirror yours. I felt like I was close to death, ( I am also a nurse ) and I knew on some occasions I was close to be unconscious with the effects of this drug. I WOULD NEVER TAKE THIS DRUG AGAIN......It is now 4 months since I last took 25mg of that terrible drug and I am just about getting back to how I was before (no migraines too), hope you are feeling better

      Jo

      Report / Delete Reply
  • Posted

    Hi YL and all others following this,

    I’m writing this whilst sitting in bed yet again, at the early hour of 8.45pm, feeling jittery, anxious and shakey. I’m hoping that someone on this discussion might give me some hope that there’s a light at the end of the tunnel.  That sounds quite depressing in itself, but I’m sick of how debilitating my migraines are and now, how anxious and hideous I feel (perhaps because of Topanax?). 

    I am 47 years old, and although I would get a hormone headache once a month in my twenties and thirties (sometimes), they didn’t last more than a day.  Since I had my two daughters 7 and 9 years ago, my hormones seem to be causing me endless problems. Some months I may have 20 to 25 days of migraines - they can be that awful aura and dizziness and all that goes before, or they can be full on severe pain and nausea like nothing one can describe. 

    My daughter was diagnosed with cancer when she was only 2, and she lost an eye to the disease. She is doing very well thankfully. However, many of the migraines were put down to stress of it all. I have a diary that shows just how the hormones influence them. Plus food. Many food triggers such as avacado, fresh orange juice, chocolate etc.  I had to find a way to help with the migraines because my life was being controlled by them. 

    Neurologist put me on Topanax 25mg in May of last year (2016). I did lose weight, but had just lost two stone from changing my diet. Topanax gave me another stone off I would say. 

     But my anxiety levels are through the roof sometimes. They hit an all time low in May prior to going on holidays. I’m severely claustrophobic and I started having horrendous nightmares about the plane etc (even though I’ve travelled and lived abroad half my life). I felt totally out of control. I couldn’t cope. Had a melt down basically. 

    I sound like a right bundle of laughs. Trust me. I’m a very outgoing, fun loving, adventurous person usually. Yes, life through us the biggest curve ball with my daughter, but I still believed I could be that fearless person to a certain extent again. Of course I’d have deep fears because of what happened to us. But not these every day fears. Like I’m going to die. I don’t want to be far away from the house at night. It’s my safe haven. I’m really worried about getting hit by a migraine when away from home - be it, just in town even. 

    Could it be the Topanax? I believe something weird is happening for sure. But I was only taking 25mg. Could that have this affect on me? In a way I hope you all think so, because then there’s light at the end of the tunnel if I stop it. I actually started taking half the dosage as of last Saturday, with the View to stopping it this week. Appointment with d. Hope he agrees with this way to stop. 

    Life has been pretty tough with these anxieties. From what I read some of you ha

    Report / Delete Reply
  • Posted

    Part two. 

    Sorry. Phone issues!!

    From what I read some of you have been feeling crap. I’m just wondering if you mostly felt better once stopping Topanax. 

    Or is my dosage too small at 25mg to have caused this? Maybe I’m just going through a period of heightened worry and feeling rubbish. 

    Hope your migraines have settled and you’re all on the road to recovery. 

    Apologies for such a long winded rant but must admit, feel somewhat better for it ;-)

    Ley

    Report / Delete Reply
    • Posted

      Hi Ley

      I really don’t know what to say, tbh, my advice would be to come off the Topiramate because all the symptoms you have described have been noted by other people, maybe not all the people get all the symptoms but we certainly had some of what you are experiencing.  My only advice would be go back to the GP or get a referral to a consultant, if you haven’t already done that.  You have to come off Topiramate slowly and gradually, although I was taken off immediately because of the condition my neuro thought I had and luckily there were no side effects.  It is a terrible drug and can leave people with long term conditions even after coming off it.  I can’t remember what dosage I was taking, but I do know it was 5 tablets before going to bed.

      I am now on my 5th prophylaxis and still nothing is working, I get between 12 & 15 attacks a month and the only thing that works is the Eletriptan I take as a painkiller.  None of the preventative drugs seem to have any effect.

      I do hope you daughter stays in remission, what an awful thing for you all to go through and that certainly wouldn’t have helped your migraines.

      Sorry I can’t be of any more help, but good luck and keep us informed

       YL x

      Report / Delete Reply
  • Posted

    Thank you for your lovely reply. I’m off the Topinax now. Thanks be to goodness! Went to Doctor the other day and explained. As I had already reduced quantity, I could stop straight away. I was on such a small dosage compared to so many others, but must admit, I’m hoping the new Topanax-free me shows a difference! I’m sorrh to hear you’re having so many migraines. It’s so debilitating. I must admit, I do dread if there’s an increase in them now because of dropping the meds. I get so many as well. I am so convinced they are hormone related. Hoping that when the menopause hits I’ll be a new woman! Must be the only person looking forward to it! 

    The Doctor suggested other meds but I decided I want to see how I am just as me. No meds. Slightly apprehensive but I’ll give it a shot for a month or two. 

    Thank you also for your kind words for my daughter. Stress can have unbelievable effects on your body. I’ll never underestimate the powers it has. 

    Take care and thanks again for your message. 

    L

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up