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Diagnosed With Autoimmune Epilepsy. Experience With Meds?

A MyEpilepsyTeam Member asked a question 💭
Minneapolis, MN

Living with side effects of lacosamide since Feb so the dr stopped increasing my dose since I was having so many side effects. Now on Mycophenolate for the autoimmune part and so many side effects just wears me out. Take it at 6 am and takes me till early afternoon till I can move around and keep getting dizzy and lose my balance can't go to work in the office. The office keep getting denied by insurance for rutaxin. I'm only on a qt or the required dose for the mycophenolate and haven't… read more

June 10
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A MyEpilepsyTeam Member

DesnaBeharie - It took me since mid-March for my side effects to start calming down when the doctor finally stopped increasing my dose so now I'm at 15 twice a day. Today was the first day I've been able to move around and not feel dizzy enough where I considered going for a short walk outside. Now I'm on 3 meds twice a day and I've only had epilepsy just over one and a half years. I have to plan activities before or after taking the dose and that is weird for me since I used to be such a spontaneous person.

June 11
A MyEpilepsyTeam Member

Yes locosamide has side effects for sure..it was alot for me off balance dizziness et.c..now taking a lower dosage but still have side effects and I take 2 more meds for the day...sleep still during the day..sorry your insurance denied it..I would rather come off all these meds..drowsy then fall asleep within in an hr or so after taking it.I walk and exercise before taking my first meds for the day because of the side effects etc.

June 10
A MyEpilepsyTeam Member

Hang in there and try and stay pos

June 11
A MyEpilepsyTeam Member

Hang in there and try and stay pos

June 11
A MyEpilepsyTeam Member

Getting medication will always depend on what kind of insurance you have and whether they will cover rutaxin. I would ask your neurologist about trying another drug other than lacosamide and that will control your seizures. I used to take Vimpat which is a brand name of Lacosamide generic, and it had too many side effects. You can get a 4th opinion and 5th opinion. But it's going to come down to your insurance staying within your coverage cost. That is why you were denied. It happened to me also.

June 10

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