I thought I would share my experience with Topiramate as it caused a few issues for me. I was given it as a 'last resort' treatment and was told that it wouldn't cause me any problems. I started on a very low dose and it was increased as per the recommended guidelines, ie weekly. This turned out to be too quickly as I wasn't able to function properly, it wasn't safe for me to drive and I didn't like the feeling of being 'not with it'. The increase was then slowed down to every 2 weeks. After being on this drug for about 2 months and noticing a big difference in the amount and severity of attacks, I had a routine blood test. The results came back that I had kidney damage which was definitely the result of the Topiramate so consequently I was taken off of it very quickly. Needless to say, the migraines returned but thankfully the kidney damage was reversed and back to normal after a couple of months. I'm now waiting for botox treatment next month and looking forward to the results. I'm sure that Topiramate has helped a lot of sufferers but, if you're one of them or you're going to try it, please ask for routine bloods to make sure that everythings ok.
Topiramate: I thought I would share my... - National Migraine...
Topiramate
I also had big problems with topiramate. I had a huge spate of hemiplegic migraines to start with and they suddenly stopped, which was a huge relief.
Unfortunately, they were replaced by terrible sickness, feeling very unwell all the time, and ultimately what I now realise was serious depression. Oddly it also seemed to make my endometriosis worse, which I assume was something to do with the digestion problems.
I couldn't get the dose of topiramate up enough to establish whether the side-effects might get better, and on the day I was on the floor, in unbearable pain, unable to move down one side and in floods of uncontrollable tears, I decided to come off it!
Since doing so the migraines have got worse again, but the sickness and feeling dreadfully low have more or less lifted. Looking back, it is frightening just how ill I was.
That's terrible, I really feel for you. I have heard that depression can be a side effect of Topiramate and with that in mind I'm very surprised that it's a recommended treatment for migraine sufferers as the debilitating effects of migraine alone are enough. Would you consider having the botox treatment?
I've actually gone for something even more radical - because mine are the result of my hormones, I am having Prostap to stop everything altogether. I didn't have know I was having migraines until I came off a course of Prostap (which is prescribed for endometriosis) and had such a huge one that I ended up having an overnight stay in a stroke ward!
If it hadn't been for that I would have been continued to be diagnosed with panic/mental health issues/ 'unexplained stuff', but the consultant said that they were happy I hadn't had a stroke and the only alternative was hemiplegic migraine. It was a real relief to put a name to all the weirdness which had been building up over a number of years.
Gosh that must have been very frightening for you! I wouldn't like to imagine how you must have felt but I am glad that you got a proper diagnosis. I hope you keep well 
I stuck it for two days! Horrendous. I wasn't even told about the need for blood tests while on it. I hope the Botox helps. I've heard good things about it.
I think sufferers need to be made aware of all the side effects etc of Topiramate and then let them make an informed decision as to whether they want to try it. I can also see why GP's don't want to frighten people into making the wrong decision as they may tolerate it well but personally I don't think it's a good idea as the effects can be frightening when you don't know whats happening. I will keep you posted as to the botox
Hi, thank you for the warning!
I've been on it for 6 months and have also had problems with sickness, dizziness and feeling pretty out of it. To be honest I thought this could also be my (chronic) migraines as I have vertigo with them... My new GP seems very good and has just arranged for me to have blood tests to check it's not causing me any internal damage. Fingers crossed, as it had helped reduce my migraines a bit!
Em
Hi Em, I'm glad you're having the blood tests. I hope I didn't frighten you with my story, it wasn't my intention to do so. Would you consider coming off of it and trying the botox treatment if it was available to you?
Hi, no you didn't! It's just good to be as aware as possible about the things you're putting into your body!
I'm quite conscious about the potential for negative side effects anyway, particularly with my eyes (just had them checked last week - blurry vision appears to be just migraine related!). So yes, definitely keen to avoid being on it if possible.
Have just had to stop hormonal birth control (Depo Provera) as that seems to be a trigger, and am a month into an elimination diet (Dr Bulchoz, Heal Your Headache). I've noticed a slight improvement but it's a bit early to tell for certain.
My GP is keen for me not to have to be on topiramate too if possible. He's particularly worried about the cognitive impairment. Good to know he doesn't just want to pump me full of drugs and send me away!
Is Botox good in the long term/for chronic migraine?
Em
Hi Em, it sounds like you have a great GP The research I've done indicates that the botox treatment will really benefit me in the long term. My neurologist is confident that I can be slowly weaned off of my daily meds - Amitriptyline and Verapamil - and have a big reduction in the amount of Zolmitriptan, Cyclizine and Declofenac that I have to take when I have an attack. To reduce my meds to an absolute minimum would be fantastic. Unfortunately I don't have 'set' triggers but my main one is that any drop in air pressure sets one off, always starting with an aura that lasts about 20 mins with a pain up the back of my neck then goes full tilt into pain and vomiting. The botox treatment is about 31 injections and gets repeated every 12 weeks to keep it fully topped up, I know the first treatment will probably give me a headache for a few days and takes around 10 days to fully kick in but after that (hopefully) I should have a great improvement
Su
As I've said before, Topiramate has been a real blessing for me. I'm on 125mg & could probably come back down to 100mg per day. My triggers are the weather. I can tell when the pressure changes or is changing but I don't usually have migraines but break-through headaches, which are manageable. Also, it's greatly improved my vision, reducing whatever swelling that was putting pressure on the blood vessels that had changed my vision daily. Usually I can see in HD now. I make sure that I drink plenty of water & juices to keep my kidney's flushed so I haven't had any problems there. Interestingly, the weather patterns for me are regional. There is something about the northeastern area of the U.S. that affects me. A friend says that its the magnetic pull of the "poles". My GP agrees. When I'm in the South, I don't have any symptoms of any kind or headaches or migraines at all. I was even there for multiple tornadoes and felt nothing! My neurologist recommends that I move back South. One more very interesting piece I'd like to add. I went on progesterone for fibroids. I instantly lost that "fuzzy thinking" feeling. My thoughts got sharper. My doctor later had to increase the dose. With the increase, my brain was crisp and quick. So just a thought I'm putting out there. No more "dopa-max", as the pharmacist joked. Maybe doc's should prescribe progesterone along with topiramate.
Hi Su, fingers crossed it works for you. It would be so nice not to have to have so many potentially nasty drugs - as well as the migraines! I'll definitely look into, thanks for the info
Hi Em, that's very kind thank you. Keep well
Topiramate helped my migraines but led to numerous kidney stones and the hospital insisted that the treatment stop. The drug also affected my mood and memory very severely and I have met many patients who have had devastating experiences. Anyone considering using Topirimate should be warned that there are serious, long term side effects.
I had the same memory problem too, I had to have notes all over the place otherwise I wouldn't remember to do things. I absolutely agree with you, people should be told of any potential side effects. I'm sure you, as well as me, made sure that our fluid intake was excellent and that our kidney problems weren't due to a lack of fluid but purely damage caused by the drug.
Hey Bluetopaz! I hope you're well!
I just saw your post. I have just started going to the national migraine centre for complex (vestibular like) migraines where I get no pain but chronic vertigo and tiredness etc. My dr there has offered me a choice (which was different to my last neuro-ontologist who said I HAD to go onto topirimate and there was nothing else!). I have three preventatives to try and also organising Botox. I was just wondering, a year on, has the Botox helped you if you had it in the end?
So glad you're ok from topirimate. For months I've been petrified of taking it and the side effects. So hence why I changed my doctor. Something in me just shouts DON'T. Anyways , hope everything is going well now and hope to hear from you
Topiramte with one dose, very first dose, landed me in the hospital. I was scared to to take it and my gut kept telling me not so and I wish that night I never took it. It took me almost a month to get the guts up to take it and I didbt know why. I didn't have fear of meds then. Now I do because of what that med did to me. Set me in fire from the inside out. Heart rate shot way up and blood pressure and it came in waves. I felt I was being torched from with in and it would run from my head to my toes and then bam up from my toes to my head. My whole body would turn blood red. I thought I was going to code. The drs never seen a reaction to it like this and called poison control as well. They were running fluids and giving steroids, benedryl and lots of other stuff as well. 30 min after taking it I started feeling heat in my feet andr rubber band popping feeling in my feet. Then within an hour it was all over and I keep almost blacking out. It was the scariest night of my life. It has worked for some people, but for me it is the devil pill and has left me with post traumatic stress and it gave me fear to take meds I have already taken like Tylenol and such. I have had to get courage up to take meds I have already taken because of that pill.
I was on Topiramate for 3 months and didn't like the way I felt at all. I felt like I was on another planet !.
I was then put on Epilim but couldn't take that either. I have been diagnosed with Basilar Migraine and now taking a low Pregrablin and although I have put on a bit of weight and feel tired a lot of the time. I at least feel like myself. The results on the kidney probs is worrying you don't know what your risking when you take some of these drugs!
Hi I know this thread was a long time ago but I am in Topiramate. I was looking for a little advice about coming off it ? You said you came off it quickly ? I am taking 75 at night only and want to stop taking as I have slowness of mind and I feel quite anxsty also I am troubled by itchy skin and hives which are driving me insane. I also get pins and needles and things don’t taste the same . I am still getting migraines so the pills aren’t working. I want to stop buts fear the withdrawal symptoms . Can you tell me did you experience any ? And how did you go about it ? I would really appreciate your help .i hope you are currently well . Ps I have been on it 7 months . Starting at 25 , then 50 and for the last 2 months 75 thanks
I took 50 mg for 12 years. I tried to go off quickly but the anxiety and insomnia were awful. My doc was no help. So I went super slowly. Got a pill cutter and took 3/4 of a pill for a month. Then 25 for 4-5 weeks. Then half if that for at least a month. Took Benadryl quite a bit at night
It was much much easier
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