Epilepsy Society
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Lots of myoclonic jerks

After some snacks (cheese related) I got a lot of muscle jerks when getting ready for bed. It hadn't happened as much but seems around menstruation and with what I eat or when relaxing it happens. I am not currently diagnosed with epilepsy but thought this was most relatable group to join currently as I had seen a neurologist who referred me to an epilepsy specialist and I'm waiting on ambulatory video EEG in December. It's just hard when I can't treat the condition right now. Not diagnosed and because I'm not having full seizures I guess it's not considered that serious but it happens pretty much every day and multiple times a day. Often during sleep. I'm exhausted most of the time. I don't know what to do. My nearby hospital doesn't do much for me and last time I went for the myoclonic jerks, a doctor there recommended going to the other hospital that specializes in this but it's far away and I don't drive. I basically feel alone and misunderstood and judged. I don't know how to stop or control these jerks and I don't think people understand the extent of it cause it usually doesn't happen in the company of others. I've gotten video of some times it's happened though. I have proof. Thank you for reading. I feel like I need some support.

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Hi I am so sorry for you only just seen your post I am epileptic but not had a seizure for 21 years. I avoid things that have aspartame in them and this makes me shaky and have panic attacks.

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Thank you

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