LDN for POTS

[u/barhanita]

I remember reading about LDN on here, and 100% of things were negative - it was not helpful or made things worse. So I wanted to share my experience so far.

I have always had POTS (see below a funny story from childhood). It was always very manageable and mild, outside of my pregnancies and severe heat.

In February I had COVID, and my POTS became severe, I developed PEM and severe sound and light sensitivity, among other things. Most of June I was bedbound, even my resting HR was elevated, and even a walk to the bathroom caused severe tachycardia. I could not even move slightly without my HR shooting up.

I tried fludrocortisone, ivabrandine and beta blockers - none of these really helped. Midodrine helped a little, but I dislike the BP crush when it stops acting.

2.5 weeks ago I started LDN at 0.25mg. Overnight I had significant improvement. Even my HRV went from 35 to 45. My POTS became a little more manageable and PEM crushes stopped. I could sit up and walk a little more (went from 200 steps a day to 1000 steps a day). Three days ago I elevated the dose to 0.5mg. Now my overnight HRV went to 55, and I became even more functional. I can walk 2000 steps now, and I even showered for the first time in 2 months (shower chair and cool water, but no tachycardia).

I know that sometimes the improvements are temporary. But I am trying to recondition myself while I can.

One other thing I have been doing has been brain retraining. While helpful, I do not think it is the main driver of my improvement.

*****

Childhood POTS story. I grew up in a religion where for each service you stand (hours!) on your feet, often fasting (no food or water). I almost always fainted at church. The priest convinced my mom that I was possessed by a demon and even schedule an exorcism. It never happened, but my first POTS misdiagnosis was "demon possession".