Benzos or Long Covid?

[[JT...]]

Hey all, 

Ive been desperately trying to unpack what Im dealing with currently. I had a covid infection last July of 2023 that left me with strange neurological symptoms and sleep disturbances. After rounds with specialists and tons of sleep deprivation I finally submitted to Klonopin and Zoloft to manage. Long story short, I ended up taking Klonopin (.5-1mg as needed) for roughly 2.5 weeks (including taper), tapered off rapidly and then switched to Valium for another 3 weeks approximately at a much lower dose (2mg). I eventually tapered off the Valium fearing the fallout from withdrawal and ended up taking Trazodone (100mg) for several months to manage sleep (still on it). I’ve been off benzos for over 2 months and my symptoms are still just brutal:

Insomnia, “tugging” sensation in my brain when I walk like someone is pushing me side to side, depression, dysphoria, anxiety, bouts of feeling “revved up” daily sometimes after activity or stress, other times it flares at rest. Can’t figure out the “revving” overstimulation sensation. Can’t nap. Don’t perceive tiredness. Whenever I’m “revved up” it ALWAYS feels like my ankles are swollen (they’re not). Also feel transient pain in my shoulders and back in this state. Skin is tingly and sometimes feels like little shocks. I could go on. But really what I’m trying to figure out it is… what’s what? You can go on just about any long covid thread on Reddit etc and see the EXACT same symptoms. It’s maddening. Part of me wants to cut the trazodone out and bail on all psych drugs but not sure if that’s wise right now. Anyone else in this COVID/Benzo conundrum? 

[[...]]

Oh my gosh JT, I’m so sorry for you as I know EXACTLY what you are going through.
 

I got Covid in late August 2023 as well and soon thereafter I started experiencing neuro symptoms as well. (I was 2 1/2 years post an 18-month taper from brand name Klonopin and was doing so well). The symptoms started 3 days after being diagnosed with Covid and it started with Hypnic jerks when I tried to fall asleep. 
 

Then, the symptoms of mild anxiety and difficulty swallowing began about a month after and then, in December 2023, the anxiety became more severe and I had a panic attack at work, then akathisia and pacing like a crazy person, my CNS revved to acute levels, air hunger, transient shoulder pain like someone is painfully squeezing them, burning skin, and the inability to nap without any perceived tiredness regardless of how little sleep I got. This started on December 18th and I’ve been unable to work since. I’m on medical leave until 2/5. 
 

I’m still struggling with “come and go” panic, difficulty swallowing and the feeling of a lump in the back of my throat. In December, it got so bad that I caved and took benzos on 3 different occasions for fear of losing my mind. It felt worse than acute. My symptoms began before taking the 3 rescue Benzos so I’m pretty sure your symptoms (and mine too) are from Covid.
 

I agree with you in that I’m not sure that I would make any major changes in meds that you’ve been taking since then especially with the trazadone or any other anxiety meds. 
 

I think we both need to ride out our symptoms without making any changes. 
 

This sucks but we will BOTH get through with this!!!! 
 

LC

 

 

Edited January 21 by [...]

[[Ma...]]

I have covid now and I  back in accute I am severe cannot handle one more minute my akathasia was manageable but now I want to scream and destroy everything and I can’t take one more minute I want to bang my head to the wall until I die. Typical aka symptoms that came 2 days before my fever got high and I slept for 40 hours straight to eventually wake up in the greatest terror

[Guest [...]]

@[JT...] @[...] @[Ma...]

Forgive me if you already know this… 

Covid (especially long Covid) causes degranulation of mast cells (mast cell activation syndrome), and since those of us going through intense stress are already susceptible to mast cell issues, it’s understandable that Covid can push us into nasty setbacks and waves of symptoms. 

It may be worth looking into measures to help one stabilise mast cells. 
 

Mast Cell 360 may be a good place to start.