Does Anyone Here Have Juvenile Myoclonic Epilepsy, And If So, What Are Things That Have Help You?
It is a bit difficult to explain, but I basically will have seizures in my hands and body that are almost like glitches before I have an actual big seizure that leads to me collapsing, etc. Does anyone deal with similar problems and has found something that really helps them?
@A MyEpilepsyTeam Member it happens to me as well but I try to hold my balance and snap out of it, as long as I don't fall to the ground I don't get a seizure, basically I feel like my limbs are out of sync, like trying to rub my belly while tapping on my head, they go weird ways and it's hard to control them. Meds seem to make this worse so still looking for a solution. I was not diagnosed with epilepsy yet as my EEG always shows no sign of activity but I do have myclonic seizures from time to time, especially when watching the TV or trying to fall asleep. I think the "glitches" you feel are complex partials and are more into the tonic-clonic register than just myclonic.
thank you so much for your feedback, i really appreciate your answers!
Thank you! π
Hi Alyssa! Like jerks? I get those too but not before a seizure. They just come and go and apparently are very difficult to treat. My doctors kind of told me I just had to get used to them. Also because some meds may help but may bring other issues. For example, lacosamide tends to work on absence seizures and myoclonic seizures but may produce other health problems. In my case it made me develop POTS (Postural orthostatic tachycardia syndrome) and had aware seizures for 4 days in a row and had to be hospitalized. So I would recommend talking to your doctor and maybe trying different AED's.
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