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AED side effects and withdrawal

Sat, 12/15/2018 - 12:12
Hello, need some help understanding since there is not a lot of publicly published studies on this. My step daughter had a couple, full convulsive seizures Sept 23, 2017. She was diagnosed with Non Epilepsy Seizures (NES) caused by panic disorder(after MRI/CT/EEG). We had also witnessed a seizure brought on by fear of blood being drawn, in ER. She was placed on Keppra in the ER. (Her mother has full med decision rights) We were noticing changes in my step daughter right away and gradually became worse. We were not being notified of her neurologist appts or what had been discussed. Mom always said, dr says she's good. We however noticed, behavior changes, frequent headaches, stomach aches, sore throat, slowed/slurred speech and dragging/ heavy feet in evening. We finally went to the neurologist on our own to ask the dr. questions. (Mom greatly interfered with our appt.) We went over her diagnosis, asked why she was put on medication, what other options such as psychotherapists, etc. In the end, they started to wean her off the keppra. 250mg each drop. We are now noticing dramatic withdrawal symptoms 2-4 hours before her next dose. Severe headaches, non reactive pupils(stay dialated), sends like she can't fully pick up her feet when walking, mixes up about 4 words in a row and doesn't notice, runny nose/ sneezing and stomach ache. They disappear after next dose. Mom doesn't notice and her symptoms are not being managed or discussed with neurologist. Is this normal? Do people with NES suffer more side effects or withdrawal from AED's?? Should we be concerned?

Comments

Take a video of her when in

Submitted by birdman on Sat, 2018-12-15 - 19:52
Take a video of her when in this state and let it speak for itself to the doctor.  Some good information is available at  www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

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PNES should only be diagnosed

Submitted by Amy Jo on Mon, 2018-12-17 - 01:29
PNES should only be diagnosed by an epilepsy specialist (aka epileptologist). It’s more likely to be misdiagnosed by non epileptologists. If she was hooked up to an EEG at the time of a tonic clonic where they didn’t see generalized activity, that would be worthwhile info. (Problem is that one can have PNES and epilepsy). One doesn’t treat PNES with keppra, but it’s a commonly used epilepsy medication. Treatment for PNES is hard to find, not something a neurologist treats. Btw, some seizures look like panic attacks but can be misdiagnosed as panic attacks. It’s possible there’s an epilepsy diagnosis that’s not been explained to you.Stress is a common seizure trigger by the way. My youngest has had a seizure when her brother was upset about a vaccination (medical situations are stressful for her).Withdrawal while weaning keppra is less of a problem than with other drugs. My 8yo stopped taking keppra in a short timeframe, due to adverse side effects. The adverse effects only stopped a day after the last dose. Keppra is metabolized very fast, another part of the consideration.  You might not see improvement until a day after stopping the drug completely. Of course if the drug is stopping seizures, things could get worse.

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