Hi

Hi there. I've been suffering from a rare condition called Nocturnal Myoclonus – hypnic jerks by another name. This is where you are continuously jolted out of sleep at the point of falling asleep. It's a form of sleep disorder where your brain misinterpret signals and activates the fight or flight response continuously.

It started in 2012, after taking some antibiotics. I found, after much research, that Clonazepam is the first line treatment. In the past 10 years I've been on and off it. The first episode took 4 years to come off (it is possible!).

I'm currently on it again. But this time round (my third episode) proves much more difficult than before to taper down. Generally, I have three big worries: 1. Tolerance. 2. My GP will stop giving me the drug. 3. That I won't ever be free of it. I don't like the feeling have being tethered to a drug, esp one as powerful as this.

Hello Headintheclouds, welcome to BenzoBuddies,

I've encountered many members who suffer from hypnic jerks as a result of discontinuation of benzo's, I hate it that the cure can also be the cause.  You appear to be suffering from kindling, and while this makes it more challenging to discontinue the drug it's still possible so I hope you won't let that discourage you.  Here are two descriptions of kindling.

Kindling - The Alliance for Benzodiazepine Best Practices

https://benzoreform.org/kindling/

Kindling - Benzodiazepine Information Coalition

https://www.benzoinfo.com/kindling/

We'll support you as you attempt to do this again, I can understand your points of concern but we're here to help you.

Pamster

Colorado Consortium Benzodiazepine Deprescribing Guidelines

Planning Your Withdrawal (Taper)

Withdrawal Support (during your taper)

The Ashton Manual

I have this too sometimes. It really makes me depressed when it happens because I am bedridden and the on top of the pain that comes from that, those jolts release adrenaline which sends me into panic mode. One of the only things I’ve found that helps is sticking to a strict sleep schedule, which is nearly impossible when tapering benzos, especially after 16 years of use. I’m rooting for you, and all of us,

God bless