I'm 22 and recently diagnosed with JME. I have had myoclonic jerks for the past four years but never went to a doctor because I never had a grand mal seizure or anything like that. My mom finally convinced me to see a neurologist, and sure enough, I have JME. However, I only experience twitching in the morning and only in mornings after I have had very little sleep or after I have had about 8+ drinks the night before. If I control my drinking and get sleep I never ever twitch. I went through all of undergrad in college (which entails drinking alcohol and getting little sleep frequently) and I never felt like I was going to have a seizure. Am I at serious enough risk to take AED's? My doctor prescribed me lamotrigine but I am reluctant to take it. Just wondering if you guys had any advice or similar situations. Thanks!
Recently diagnosed...AED's worth the hassle?
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If you can can control your seizures solely by avoiding triggers, definitely do it! The best approach is to not have them in the first place. If you continue to have seizures, there's no way to predict if they will escalate or get worse. If you are unable to control your seizures, at the very least keep track of them -- if they seem to be happening more frequently, lasting longer, or changing for the worse, then that's a sign that you may need to consider the meds.
You might want to try taking a magnesium supplement before you go to bed at night. For many folks it can help reduce twitches, cramps, jerks, spasms, etc.
Thanks! I'll definitely try the magnesium supplement at night. I might get a second opinion from a different neurologist too. If it gets worse (which it really hasn't in four years) then I'll reconsider the meds, but for now I think I'm going to try to control my JME non-pharmacologically.
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by the way it's my understanding that lamotrigine is one of the newer and more stable AEDs
I'm taking 300mg of it a day - I had bad effects with levetiracetam and got switched over.
It did take several days to seem to "level out" or something (and actually I've still had seizures, and one period particularly bad, over two days) so it may be a sensitive drug though too, sensitive in finding and leveling on an efficacy level.
idk
not exactly like I would "recommend" it if you feel you would be able to control your seizures non-medicinally
I'm taking 300mg of it a day - I had bad effects with levetiracetam and got switched over.
It did take several days to seem to "level out" or something (and actually I've still had seizures, and one period particularly bad, over two days) so it may be a sensitive drug though too, sensitive in finding and leveling on an efficacy level.
idk
not exactly like I would "recommend" it if you feel you would be able to control your seizures non-medicinally