Fampyra and Seizures
Does anyone know, if you are unlucky and have a seizure is any risk of further seizures reduced/eliminated as soon as you stop taking the drug, or are you left with a residual heightened risk of repeated seizures?.
My ms team are keen for me to try Fampyra and I am looking at the pros and cons.
For starters, I am very fortunate that the MS doesn't have a massive impact on my daily life...or perhaps I have learned how to cope with it! We live in the country, the nearest shop, and bus stop, is 2miles away. I can't afford to lose my driving license. I have a horse at home and regularly ride, we often go away for training, and weekend clinics, in the trailer. Yes, I am slower than I used to be, I can't walk long distances and have to carefully pace myself to combat the fatigue. I also still play fiddle at various music sessions, but find that my dexterity is slowly decreasing and impacting my playing. Part of me is excited by the prospect of the potential improvements, but I am also really concerned about the possibility of seizures and whether they can be permanent!?
Also, roughly how soon do the other potential side effects wear off?
Thank so much for reading, and any comments or advice 😊 Emma T
I have no advice for your particular question. Before starting Famprya I had great fears of possible seziures. I’ve never had any history of them. I’ve been on it for almost four years and still remain having never had a seizure. I also had fears of the insomnia or nightmares, also did not have either of these. I only have the regrets of having these fears and not starting it sooner.
Ask your doctor or nurse for specifics but I thought the risk of seizures was only while the drug is in your system. I heard it helps the nerve signals travel and for some that can have the unintended effect of seizures but it’s pretty rare. I also worried I’d be unlucky but it helps a lot of people walk too. 🤔