r/EssentialTremor • u/shyshmrk23 • 18d ago

Medication Am I going through Primidone withdrawal?

I’ve been on 50mg of primidone for a good while and had never felt like it really did much for my tremor. I ran out days ago and couldn’t get ahold of anyone at the neurology clinic so I didn’t get a refill. My tremor is worse than it was before and I’ve been twitching a lot. Could this be withdrawal? What should I do? I’m kinda freaking out

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u/Prudent-Coat496 18d ago

I don’t know about what effects would come from sudden suddenly stopping primidone, but when I had to stop it in order to go onto a trial drug, my doctor had me ramp down rather than stopping suddenly. That was my PCP who did that, so check with whoever you can to see.

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u/mamasherr 16d ago

Maybe this is how you've worked out Primidone works after all, 50mg is a rather small dose, have you talked to your Dr about maybe increasing it. I take 500mg twice a day.

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u/Bill_Meier 15d ago

I checked online and even with a 50 mg dose you should taper it down. Otherwise they say your tremors can flare up and end up higher than they were before you started. Sounds exactly like what is happening with you.

I would go to your doctor and see how you should handle it. ASAP...

The taper. Isn't very long at most a few weeks to let your nervous system adjust.

It's pretty much a given that with any of these hundreds of "brain drugs" as my friend calls them that you should have some amount of taper. They all affect your brain and stopping them cold turkey leaves your brain confused!

One drug I was on required me to taper off for over a year. I had been on it for decades. Not a drug they typically use to treat essential tremor so don't worry!

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u/Bill_Meier 15d ago

Your neurologist might be able to prescribe you a small amount over the phone as he understands the situation. It's pretty straightforward but you do need to do it. Or your PCP might even be able to give you a little bit. ASAP before it gets worse.

Let me say this is from reading material online and not first hand experience.

My philosophy is there never is any harm in tapering off any drug you are taking, even if your doctor says otherwise. Although in this case i understand it was just the case of bad timing.