Depakote/ PNEA.

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darianmadsen

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Hello all! I’m 20 and i have been having seizures since i was 16, when they started i was diagnosed with epilepsy and put on keppra, 2 750mg pills a day and that prevented them for awhile until i could no longer stand the side effects and was going down a dark path. I went to Strong memorial hospital in Rochester where they diagnosed me with PNEA in 2017, I was told that they are stress induced (as if that isn’t stressful enough) and that i shouldn’t be taking medication. Now I have new neurologist who I’ve been seeing for recommended Depakote, since i still have seizures weekly and still have that post ictle phase after the seizures. He recommended Depakote and I’ve heard nothing but bad things about this medication. Keppra was NOT right for me and I’m very scared to try this one. Any advice on this med or different ones???


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Different meds work differently on different people. You can't know how the med will work on you without trying. The manufacturers have to list the side effects of the drugs by law and of course for their own liability. Don't read into it. Depakote has been a good drug for me other than the weight gain.
 
What is PNEA? Is it some kind of epilepsy syndrome?
As far as determining how one will respond and react to the various seizure medications, unfortunately the only way to really know is to try the one(s) your neurologist suggests and see how you do. Not everyone has side effects; just because a particular medication has possible side effects listed does not mean you will experience them. For instance, a medication that is reported to cause dizziness in 30% of those who take it may sound high, but the flip side is that 70% of people do not report dizziness. And if after a few weeks side effects are intolerable for you, let your doctor know and the dosage can be lowered or a new medication can be tried. A key aspect to starting any seizure mediction is to taper onto it slowly. When possible I always ask my neurologist to write the prescription for slower dose titration than the so-called standard so as to reduce the chance of any side effects.
 
masterjen said:
What is PNEA? Is it some kind of epilepsy syndrome?
As far as determining how one will respond and react to the various seizure medications, unfortunately the only way to really know is to try the one(s) your neurologist suggests and see how you do. Not everyone has side effects; just because a particular medication has possible side effects listed does not mean you will experience them. For instance, a medication that is reported to cause dizziness in 30% of those who take it may sound high, but the flip side is that 70% of people do not report dizziness. And if after a few weeks side effects are intolerable for you, let your doctor know and the dosage can be lowered or a new medication can be tried. A key aspect to starting any seizure mediction is to taper onto it slowly. When possible I always ask my neurologist to write the prescription for slower dose titration than the so-called standard so as to reduce the chance of any side effects.
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Thank you so much for replying! I guess my biggest concern is taking the medication when not diagnosed with epilepsy. PNEA is psychogenic non epileptic attacks...i just don’t want to take medication and have it cause more bad than good. I felt that the Keppra was causing me to have more seizures while on it vs not on it.
 
Hi darianmadsen,

It's a small world just like you I've been going to Strong since 1972 and every time I try to find someone locally I end up going back there.
Years ago I was put on Depakote and it did wonders for my absence and complex partial seizures. The one thing that can happen is a person can either lose or gain weight while on the drug and I lost 70 lbs. in 4 months even though I was eating 3 meals a day along with snacks. I later had to go off the drug because my body got immune to it and it started eating up the blood platelets but that rarely happens to someone.
Many yrs. ago the neuro I had thought I was faking my seizures and that's because the damage was so deep in the brain they couldn't find anything. Ask the Dr. to do a wada test on you and that will pinpoint the cause of your seizures. Also ask them for a DNA test to see what seizure med will help you the most with the least side effect. I wish you the best of luck and May God Bless You!

Sue
 
Hi darian,
I was wondering if you might have been referring to psychogenic seizures but wasn't positive - I only have heard the abbreviation PNES
used in reference to them. If seizures are diagnosed as psychogenic then one wouldn't be prescribed an antiepileptic medication. That you are prescribed one suggests to me that your doctors aren't positive and have prescribed the Depakote as a precaution in case your seizures are due to epilepsy. Have they said anything about your episodes perhaps being migraine related? I ask this because Depakote is often used for migraine prophylaxis.

Are you seeing an epileptologist (a neurologist who specializes in treating seizures)?
 
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