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 ?!?
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
Yes I had the MRIs and CTs EMGs all done all show nothing .
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.
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.
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 
YL
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
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
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
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
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
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.
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
YL
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.
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
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....
Diana, You need to go to the doctors and then get a 2nd or even 3rd opinion, DO NOT let them tell you it's nothing
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..
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