Clonazapam, cytokine storms and crashes

[Uno]

Hi

I haven’t posted here in a long time but I’m having some problems.

It started with shakes and tremors years ago so I was put on Clonazapam. My ME started getting worse and worse- one day after running out of Clonazapam (I took more than I was prescribed because I couldn’t get to sleep) - I didn’t sleep for 3 nights and on the 4th day I was shaking so much I couldn’t even hold a cup of coffee. - I stupidly decided to have a shower and I collapsed and broke my ankle and had to have surgery on it. This was two years ago. Then I caught Covid and the nightmare began.

I didn’t realise my lack of sleep and collapse was from Clonazapam withdrawal.

Ever since Covid I now depend on it. When I’m on it I feel ok and can manage things around the house but I frequently run out and get into withdrawal and it’s hell.
Last week was the worst week of my life - I have OCD and I didn’t clean anything, I was so weak I could just about hold my phone and type.
Then I got the Clonazapam back and was back to normal.

I’ve tried coming off it and when I do I am SO ill. I’m wondering if I’m experiencing a “Cytokine storm” or some kind of inflammatory response.

I don’t want to be on it for the rest of my life. My body has become adjusted to it so I need higher doses to make it work.

Is there any alternative to Clonazapam?

Thanks for reading and have a Merry Christmas xx

 

[Mary]

Hi @Uno - I'm sure you know that clonazepam is a benzodiazepine. Benzos are highly addictive and tapering off of them has to be done very slowly and carefully. You don't just stop them or you can run into serious trouble as it seems you have. Other possible consequences of suddenly stopping a benzo are seizures. It's really unfortunate that many doctors who prescribe these drugs seem to know very little about stopping them.

The fact that you need higher doses for the clonazepam to work tells the whole story - there is no end to what you need with benzos until you get off of them.

Some good resources:

benzobuddies.org
https://www.benzoinfo.com/ashtonmanual/

benzobuddies.org has an on-line forum (and lots of info) and the Ashton Manual is considered by many to be the bible for tapering off of benzos.

I don't think you're experiencing a cytokine storm or inflammatory response when you stop the clonazepam - I believe you're going through withdrawal, and this is why it has to be done so slowly and carefully.

I tapered off of 1.5 mg. lorazepam several years ago and took 8 months to do it, very slowly and it still wasn't easy but it was bearable. Things that can help with withdrawal symptoms were niacinamide, vitamin C, taurine, l-theanine, but no magic bullet existed to replace the lorazepam.

 

[SWAlexander]

Is there any alternative to Clonazapam?

Don’t stop taking clonazepam suddenly, as it can cause withdrawal symptoms. If you're thinking about switching from clonazepam, talk to your doctor. If it is a cytokine storm have a blood test for inflammatory markers. Several blood tests can help identify elevated levels of cytokines or inflammation. In this case, Cetirizine could be very helpful.

 

[mattie]

cold turkey quitting a strong benzo like Clonazepam could even kill you! I always taper with 0.01 mg a day.
This can only be done accurately with liquid form. (Rivotril)
And make sure you never ever suddenly run out of benzos.
Also when you feel the need to dose higher it is probably time to start that slow taper.
Clonazepam helps me significantly but discipline is a must. And its not for everybody.

What helped me the most with sleep is Doxylamine;
It’s a first-generation H1 antihistamine with relatively strong sedative effects. (Kirkland sleep aid).

 

[Mary]

What helped me the most with sleep is Doxylamine;
It’s a first-generation H1 antihistamine with relatively strong sedative effects. (Kirkland sleep aid).

Doxylamine succinate (generic for unisom) has helped me a lot with sleep - it's one of my favorites to take. Unfortunately, I develop a tolerance to it rather quickly, like almost everything else. I can take at the most 10 or 12 days before it loses its efficacy, so I will then swap it out with other things until I can go back to it again in a couple of weeks.

It's totally unlike benadryl. Benadryl always made me feel crappy and didn't help much with sleep either, but generic unisom was like magic. Actually it's very strong and I recommend starting with no more than 1/4 a tablet, or 1/2 at the very most. And it doesn't leave me feeling hungover the next day like benadryl always did.

 

[Blazer95]

pregabalin can be used to substitute benzos, but keep in mind pregabalin can cause addiction aswell. just in a lower level then benzos.