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Living with epilepsy - Introduce yourself & meet others

Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)
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@lisalucier

Hello, @arunhari, and welcome to Mayo Clinic Connect. Sounds like you've managed the myoclonic epilepsy for a long time. Sorry to hear you now have sleep myoclonus, and a great deal of stress.

You may be interested in this Mayo Clinic information specifically about myoclonus: https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459

I'm hoping some of the members in this discussion can tell you a bit about how they have managed their (or a loved one's) epilepsy and whether they have experienced sleep myoclonus, like @dawn_giacabazi @jakedduck1 @bonnieh218 @valm. @patrassi may also have some insights.

How has the sleep myoclonus affected your sleep quality, @arunhari?

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Replies to "Hello, @arunhari, and welcome to Mayo Clinic Connect. Sounds like you've managed the myoclonic epilepsy for..."
valm | @valm | Sep 22, 2018

Hi @arunhari . I began with facial brachial dystonic seizures/epilepsy and had facial and arm jerks on my left side. 10 days in the hospital and they got the seizures to stop with IVIG therapy and Keppra at 500 mg twice a day and was weaned off of the Keppra in Feb/Mar. THen the jerking came back so I had another 5 day IVIG infusion. That lasted about 3 weeks. Then I had my first RItuxan infusion in March. In April I had grand mal seizure and was put back on Keppra. Then had more grand mal and absense seizures so up’d the Keppra to 1000mg twice a day. Almost 2 months seizure free and had 2 more grand mals one day after the other, so they upped my Keppra to 1500 mg twice a day. And then added in Vimpat. Just passed the 100 day mark with no seizures.
I have not had the type of seizure that only comes when you are sleeping.

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