Seizure question. For those of you in the epilepsy and or prior seizure camp. How was your taper?

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Not many people here have actually had seizures it seems and were put on benzos more for anxiety/sleep. I am NOT asking for medical advice just some experiences with tapering since we have more sensitive systems. 

I went into a major status epilepticus event in the emergency room due to hyponatremia (extreme low blood sodium)/encephalitis and delayed/botched medical care in 2022 and started getting all kinds of hypnic jerks, tinnitus, numb left arm,  tics, etc pretty much right after i got home. I think it was the Haldol/Ativan/Keppra/Precedex combo and tons of other drugs (antibiotics, antinausea ,Flomax,) they ended up giving me via IV that caused this extreme dysregulation on my nervous system. I saw a neuro for awhile, but it was useless. Had all the EEG and sleep study stuff which didn't reveal much. 

 

I started Valium 5mg March of 2023 due to these extreme hypnic jerks I was having. Then I have been tapering since May of 2023 and now down to 1.10 mg of Valium which hasn't been easy, but not bedbound/housebound yet either. 

 

My question is since we are more sensitive due to our past seizures than say an anxiety type of person or insomniac what has been your experience with tapering? What benzo did you taper and how slow or fast did you go and did you have an AED while you were tapering or did you just try it without any AED's?

[[Bi...]]

Yes, I can relate as I have epilepsy. I was put on clonazepam, and tapered over 7 months. Been off for 25months, and getting some windows now - been seeing more of the light recently and had a day where I felt like myself on Sunday before going into a far worse wave. But I have managed to fight it through, as well as work for the last 18 months.

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Thank you Biddybee for that reply. I tell ya it is so much more of a  sensitive situation tapering when you have had seizures already or are an epileptic as you have said.   What was your Clonazepam dose when you started tapering? Are you now on AED's or were you on any other AED's while tapering? Did you have any seizures while you were tapering?

[[Bi...]]

I was on 0.25mg AM, 0.5mg PM when I started tapering. I've been put on another type of AEDs instead which is something I always need to keep in mind