Was On Dilantin For Almost 48 Years Now Vimpat
UpdatedI had a seizure when 13 years old and put on dilantin. Had 2 more seizures till I was 21 and no more. I am now 61 years old. So it has been 40 years and no seizures. Mayo clinic md said per eeg I can have a seizure if I don't take seizure meds (?). From there he weaned me off dilantin and put me vimpat. I have been fully on vimpat for 1.5 months. My walking is bad - due to my cerebellum, which is bad due to the dilantin. Since on vimpat my unnormal gait has changed with different unnormal attributes. I have recently acquired tinnitus.... I am a buzzing bee. Unsure if it's from the vimpat or other reasons. I am trying to see my gp and neurologist about this - but still waiting for some questions answered. Like to my gp's nurse - should I see my gp 1st or do you want to refer me to an ent md? And then to my local neurologist I asked (not the mayo md) - I have read that b12 and or complex b is good for tinnitus. And does that interfere with vimpat? Here is a question to all of you --- in the am I take a multivitamin/centrum way after taking my 100mg vimpat and all day long I have a fog like/debilitative headache. Then in the pm I take another 100mg vimpat. And in the pm I am fully fine - my headache is gone, but that is when my tinnitus begins. Why is this? And when I wake up my tinnitus is bad. And as the headaches/or hurtful loopiness sets in/no tinnitus. Should I even be on seizure meds? Do mds just want me on it for legal reasons? I have read that after 5 years and no seizures - then you can possibly get off meds. When the pharmacist at cvs heard that mds say I have to be on the meds and I haven't had a seizure for 40 years, he was beyond startled. Any other helpful info, please?
1 Reply
It can depend on the results of your EEG, some people have defects in their brains, which can include chemical imbalances, so they may require a lifelong medication for seizure prevention. It could be that the only reason you haven't had one in 40 years, is because of taking a medication for prevention.
There is a chance that you may not experience seizures, if you stop taking a medication to prevent them, but there is no way to be sure, since not all conditions that cause them go away.
Vimpat can cause side effects like those you've mentioned, as well as nausea, diarrhea, heartburn, blurred vision, and vertigo.
Are you on any other medications? How long have you been off the Dilantin?
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