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Epilepsy Society
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KEPPRA Help needed - Fed Up

Hi All, I’m now upto 1250mg Keppra twice daily, really struggling with side effects like feeling sad emotional angry scared etc anyone have any tips on staying on Keppra but anything to help side effects? Only started having seizures in September at 41 yrs old & meds have stopped seizures, really fed up 😔

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I can imagine how your feeling. Keppra is great for some people but for me the side effects were just like yours. I was angry, in fact my daughter nickname me ‘the wicked witch of the west ‘. I was sad etc but when it came to the point of me thinking of throwing myself down the stairs, I decided enough was enough. So I contacted the neurologist and my meds were changed. Ok so I’m not completely seizure free but at least I’m not thinking of committing suicide. I can only tell you what I did and I hope it helps

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Thank you, I have neurology follow up in 2 weeks & will defo discuss

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My daughter is on Kepra too and is struggling with depression since her seizures started. I never stopped to think that it could be the meds. I'll see about getting her meds switched since she is also having break through partial seizures as well.

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Keppra side effects not nice at all good luck to your daughter

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As said 1250mg twice daily & ive just had another seizure Saturday night 🙄 was lucky my partner woke up as I was face down in pillow, I now have anti suffocation pillow

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Sorry to hear that, my daughter just had another focal seizure as well. She's on 2000 mg per day. We have an apt Friday, hopefully the neurologist will change her meds. Best of luck to you, I hope they can find a better medication for you as well.

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Ah I hope she’s feeling ok, I guess that means they’ll up my meds then I’m not sure how high they go but if your daughters on 2000mg I presume I have higher to go 🤦‍♂️

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Thanks, she's fine. I asked the doctor to change her medication to Dilantin, which is what my dad takes and what I used to take. Hopefully it works out for her.

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I had to come off of keppra. It was making me so upset and stuff all the time that my psychiatrist thought I had severe bipolar disorder. I came off of the medicine and started lamictal and I’m like a completely different person. This is just my opinion....I’d rather have seizures than to EVER be on keppra again. I also started having seizures out of nowhere. It’s been 3 years and multiple drs can’t give me an answer. Mine started at age 24.

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You may wish to have your Neurologist do genetic testing through Athena Diagnostics. I began having seizures when I was a Teacher at 40 yrs old. I went to many Neurologists in my area; no one could ascertain why. I went to the Cleveland Clinic and genetic testing diagnosed: Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, caused by mutated gene NOTCH 3 & Chromosome 19. Genetic testing gives a Neurologist areas to begin treatment. Unfortunately, for me there is no cure or treatment; for me, and there are other symptoms. It is a rare illness. Keppra didn't work for me. Lamictal XR (brand name) with Clonazepam, has worked fairly well for me; albeit, in my case, my seizures have not totally stopped. They are less frequent and not as aggressive. Their are many genetic tests, that may find solutions/cure for you.

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