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Anyone taper off Primidone?
How did you do it? Side effects?
Started Primidone April 2021 for essential tremor. Taking 50 mg/am and 50 mg/pm.
At the same time tapered off an antidepressant which has caused terrible discontinuation syndrome.
BUT drugs.com show many of my symptoms could be from Primidone!
Worsening depression/anxiety, agitation, insomnia, lack of appetite, etc.
Anyone else experience this?
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Hi @santosha
Yes I believe it focuses on philosophy.
I’m more interested in breathing exercises yoga like I mentioned earlier. Sorry it took me longer to respond but I’m now finally off keppra! I’ve waited two days for it to be out of my system because I know that’s how long it takes and I haven’t had a seizure. That’s a good side.
Bad side I’ve been a little mislead by my previous neurologist. These seizures I have might be hypoglycemic epilepsy. My pharmacist thinks so and I see my primary doctor who helped me taper off keppra.
Little upset I was mislead by my neurologist. I kept asking her if I could reduce the keppra toward the end and she said “I have another patient like you who always asks if they could reduce the meds” ironic being that she’s the neurologist and in the beginning let me reduce the meds. Even my dentist who deals with jaws and brains somewhat said it might be something else other than the seizures I have dealt with. And since I’ve gone off keppra over the last two months I haven’t had a seizure. In the long run I’ve really started reducing it for 8 months but some reason my neurologist was reluctant towards the end, half listened and my doctor and pharmacist both said it was okay to go off of it.
My dentist who I’ve known for 15 years said she was misleading a bit and only half listened and blamed me for doing bad things. It’s like you said the neurologists only care about giving us the drugs but not the effects they have on us.
So that’s an update on me and why I haven’t responded haven’t been ignoring you.
Kelly
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1 ReactionHi Kelly (@kel1), Good Evening
No problem at all, always answer in your time.
I am very very happy that you did not have any seizures since you have been off Keppra. Hope it keeps this way!!! Vibrating for you!
Sorry, I could not understand very well the bad news. How did your neurologist mislead you? This is not very clear to me.
BTW, have you watched the movie "First do No Harm" with Meryl Streep? It is available on YouTube. It is a movie about a boy with severe epilepsy, unresponsive to medications with terrible side effects, directed by Jim Abrahams. It tells aspects of the story mirror Abrahams' own experience with his son Charlie.
I wish you and all in this group a wonderful weekend 🙂
Santosha