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JME seems to be getting worse or it could be I was off meds for a bit (Dr authorized) thought they were under control.
@A MyEpilepsyTeam Member It's a combination of eeg and mri. If they do a longer type eeg then they would be able to tell where it comes from and how it plays out.
The first thing is to work out what it is then go from there. I'm sorry to say but at the moment AED meds are the best first line defence they have against seizures. If that doesn't work, they then add what's called a second line med. Then from there if things still don't work, they need to work our weather you are med resistant. If you are then they move on to other options.
Even when they move on to other options you would likely stay on meds as they would likely make the seizures a lot less worse compared to what they would be like if you had no meds.
@A MyEpilepsyTeam Member So you still may not, have it? Just some advice to save you all the stuff I had to do. If you are not diagnosed with frontal lobe epilepsy already then unless something comes up in testing related to this area in testing, then you won't have JME as it only happens in the frontal lobe.
@A MyEpilepsyTeam Member that’s what they tell me but going to a specialist for a better look soon.
Meditate, listening to calming music away from bright light. , change diet, nap if you can with your eyes covered, just a few suggestions!
I’m guessing the can maybe tell that by the NUMEROUS EEGS I have had done over the years…
I personally don’t care what they call it I just wish they could fix it! I know that may be unrealistic but man, whatever it is a pain in the tail! I am pretty sure nobody seems to know what the heck they are talking about and just throwing pills 💊💊💊 at it and hoping something works (like they always do) They all but admitted they don’t really understand it.
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