Topiramate......

Everyday living
1

Hi everyone.

As my MS seems to have progressed quite a lot over last couple years and as a result of a new MRI have been prescribed topiramate to take daily (25mg for 2 weeks then 50mg for 2 weeks then 100mg after) and am starting DMD injections as soon as they are delivered (decided to go with copaxone). However although I were quite happy to start the DMD’s - can see the benefits of trying to delay any type of progression obviously, I have been loath to take the topiramate basically due to the side effects and probably partly to do with my continous denial that things are getting worse…

However after a long discussion recently with my ms nurse and the fact that I have been feeling so poorly for the last few weeks I decided that I would give the tablets a go. I started taking them Monday night - 25mg. This morning I woke up and felt a tad odd - my head felt a bit muggy etc. I initially thought nothing of it but as the day has progressed I have felt more and more weird. Gradually as the afternoon has progressed it has felt as if someone has given me an anaesthetic in the forehead and the numbness and tingling has spread across my forehead, down both sides of my eyes, cheeks and has stopped just above my mouth. I feel odd to say the least, my head is muggy and I feel like my speech is being affected (people tell me it isn’t).

Now when I had my attach of MS I had very similar sensations - at this time I felt like my brain were missing a beat - I felt disoritentated, detached and my speech at times was slurred. I could feel this happening - like something going across my brain and then it would be over in seconds. This went on for approx 3 months before stopping altogether. This was 20 years ago and I have never experienced the same episode again (I sometimes get funny heads, tingly face and blurry vision but nothing quite like the above).

Now my question is could this current feeling of oddness be a relapse of that first symptoms or could the topiramate be causing this - could I be having odd side effects so quickly (after only 72hrs of initially taking it)??

A confusing message I guess but any comments would be appreciated

Thank

2

I got my first side effects from the drug about a week in, and for me the worst was feeling all jittery, hyper, odd, anxious and out of control. I had a funny sense of taste too. Tingling in my face and slurring have all been my MS symptoms, but, as you know, we are all different. If it is the Topamax, the symptoms will wear off eventually, but it took months for me, and a very long time to get me up to dose as when I increased to 50mgs after 1 week I couldn’t take the side effects and had to go back down again. I was taking it for migraine prevention though well before I was diagnosed with MS. I hope you feel better soon.

3

Hello parityssister

It could be a side effect of the Topiramate but my advice, is contact your gp or ms nurse to be sure.

Take care

4

Thanks for your comments - still feeling incredibly odd and out of sorts, head is buzzing constantly. Not driven since last week simply don’t feel safe enough but decided to try work today and have coped with a few hours without killing anyone so that’s good :slight_smile:

Have decided to wait another week in the hope it will all calm down (am supposed to increase to 50mg after) and if it doesn’t go see my ms nurse. I was so loath to start to taking them in the first place I feel I at least have to give them a go.

But again thanks for your comments :slight_smile:

5

Thanks for your comments - still feeling incredibly odd and out of sorts, head is buzzing constantly. Not driven since last week simply don’t feel safe enough but decided to try work today and have coped with a few hours without killing anyone so that’s good :slight_smile:

Have decided to wait another week in the hope it will all calm down (am supposed to increase to 50mg after) and if it doesn’t go see my ms nurse. I was so loath to start to taking them in the first place I feel I at least have to give them a go.

But again thanks for your comments :slight_smile: