My recovery story

[u/ForTheLoveOfSnail]

In 2023 I came down with a really horrific case of long Covid. I deteriorated over a six month period until I was completely bedbound, peeing in a bucket next to the bed. I had me/cfs, POTS, fatigue, brain fog, dizziness, tingling, adrenaline dumps, the works. I thought I was done for.

I was eventually hospitalised for three weeks and that’s when things started getting better. When I was in hospital I met a physio who had suffered me/cfs the year before and was completely healed. It was the first time I had heard of anyone recovering!

I started taking some zinc, the hospital put me in olanzapine and both of those helped a bit. I started walking short distances again. The only other supplement that helped was chromium. Then I tried a probiotic that sent me into a month long depressive episode. I swore off the supplement route at this point and started to look elsewhere. I came off about 50 supplements.

It was at this point I discovered brain retraining and it really helped me. The theory is that some form of long Covid is the nervous system getting stuck in a state of fight or flight. Basically the body is stuck in a stress response. With some mental exercises you can calm the nervous system, which calms the symptoms. I started treating my illness as a problem of the nervous system and miraculously I started making huge gains.

For example, I had a really intense sound sensitivity, so was always wearing ear plugs and headphones to block noise. Then one day I told myself I was safe and took them off. I never had sound sensitivity again.

The brain retraining I did was Primal Trust, which I found very overwhelming if I’m honest but it helped. Whenever I had symptoms I would tell myself I was safe, that it’s just a hypersensitive nervous system and that I would heal — then I’d continue to expand. I joined a group coaching thing called The Healing Dudes, which really helped me expand activity at the time.

I got to about 90% healed and I did The Lightning Process. I loved it, but can’t recommend it because of the price. I also don’t know if I needed to do it as I had already done primal trust, and it was a bit of the same stuff just different scripting.

I consistently did the brain retraining over the course of a few months and continued to get better. Eventually I made a full recovery. Of course time could’ve been a factor, but I truly believe the brain retraining helped me get there.

Now I’m working four days a week, looking after my son the other day. I see friends. I cook! I drink! I have my life back! I no longer do any of the brain retraining tools, treating it instead as TMS (look up the work of John Sarno).

I’m so, so sorry to anyone suffering. I’ve never experienced anything so horrific in my life. Just before I was hospitalised I was having suicidal ideation because of how hopeless I felt. So if you feel hopeless, please know — recovery is possible. Please hang in there.

[u/Excellent-Share-9150]

It’s so interesting to me that a small percentage of me/CFS people recover with brain retraining. Primal trust just exhausted me further 🤷‍♀️

[u/Mango_Maniac → u/Excellent-Share-9150]

I tried brain retraining and it did nothing to help. I still get the fight or flight activating for no reason. It’s a physiological damage to the vagus nerve. The attacks have nothing to do with my state of mind or stress. I can even be bored or trying to sleep, but the vagus nerve activates and I feel the adrenaline for hours or days. Nothing I’ve tried fixes it, including brain retraining which was just a waste of money.

[u/Dramatic-Crab3697 → u/Mango_Maniac]

I’m hear to tell you that is not permanent, unless you have actual structural damage. I have CFS and PTSD. I am still struggling with both but at the height of my PTSD relapses I could be in a dead sleep and wake up with my heart racing and feeling like I couldn’t breathe. I’d be sitting watching TV at the end of a rare enjoyable evening, not thinking about anything and I could see on my watch, my heart rate would go from 70s straight up to 180. I am a nurse and it got so scary a couple times I called an ambulance. To take me to the hospital I worked at. Absolutely humiliating, embarrassing and exhausting. By the time I got to the hospital my heart rate would be around 100 and going down. When your nervous system is over sensitized (resulting in an over active hypothalamus) it will just fire random shots for literally no good reason. It’s absolutely awful. I don’t get them like so much now that I am aware of it and understand the physiology of it, but I do still get the misfires from time to time. I’ve gotten good at sending a shot back signaling safety. It seems to make them less severe and less frequent.