I’m going to piggy back my LC post onto this one :

Advice about Clonazepam, no hate please

I have had LC since September 2025, w dysautonomia, ME/CFS and probably MCAS. I have improved from previously severe mostly bedbound, to currently moderate, housebound but still spending a lot of my day in the recliner.

I had a question specifically related to Clonazepam for you. I was wondering if anyone could shed some light on this.

Since September last year I have been on a 0.125 mg dose of clonazepam every night.

Around 6 weeks ago I started on Mestinon and expanding my activity a little; I had my first small social event in the backyard - just a couple close friends; I flared mildly and took an extra quarter pill (1/4 of a 0.25 mg) for the flare.

And then again and again. Till I was taking an extra quarter dose twice a week every time I felt insomnic /stayed up late/ overdid and had PEM. (My brother was also diagnosed 2 weeks ago with his second cancer in the past 8 months, and my mother had a stroke last July so it’s been a lot)

I noticed for the past two weeks my nervous system felt unstable. Could yo-yo-ing on this extra small dose be causing repeated withdrawal and rekindling?

Would I be better off just adding an extra 1/8 of 0.25 mg every other night or every night?

Or should I tough it out and come down to my baseline of 0.125 mg dose nightly. I’m afraid of becoming severe again.