Long COVID with unbearable dysautonomia, somewhat better; Steady Coach helped
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 14 months
- Last post
- Nov 2025
In their words
- Condition: Long COVID
Hi, I have had LC for a little over 3 months now.
In context ↗ - At worst: Moderate
First couple months were a nightmare. Luckily I had no pain, but the dysautonomia symptoms were unbarable.
In context ↗ - Now: Somewhat better
Better, I have a recommendation for you ... an online group called the steady coach was the only thing that helped me.
- Began after: COVID
I think Covid just pushed my body to the edge.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Developed long COVID around September 2024, with unbearable dysautonomia in the first months and ongoing light sensitivity, dizziness, blurred vision and head numbness. Low-dose naltrexone eased the fatigue; fasting brought no change and more anxiety, while DPDR doubled after they stopped naltrexone and started fasting, cause unclear. The Steady Coach online group was the only thing that helped; by November 2025 they felt better but still had light-headedness, dizziness and light sensitivity, which they attributed to constant panic.
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What they tried
What they credit
Also tried
Their words about each treatment
- acupuncture · Not said
Went to acupuncture today. Explained the exact symptoms I was feeling to the practitioner.
In context ↗ - lexapro · Helped
the last one gave me lexapro which has been helping me manage anxiety attacks
In context ↗ - naltrexone / LDN · Helped
Currently I am on naltrexone, which helps with the overall fatigue.
In context ↗ - intermettinent fasting (23:1) · No change
I did intermettinent fasting for 5 days (23:1) and just completed a 48 Hour fast. Didn't experience any positive change with my symptoms.
In context ↗ - 48 Hour fast · No change
just completed a 48 Hour fast ... Didn't experience any positive change with my symptoms.
In context ↗ - the steady coach · Helped
Nah, an online group called the steady coach was the only thing that helped me.
In context ↗
Approaches: Brain retraining
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2024 | Long COVID began after a Covid infectionI think Covid just pushed my body to the edge.In context ↗ | Mild | |
| October 2024 | First months, unbearable dysautonomia symptoms day and nightFirst couple months were a nightmare. Luckily I had no pain, but the dysautonomia symptoms were unbarable.In context ↗ | Moderate | |
| 2024-10-17 | Anxiety more manageable, thought they felt a bit betterit’s been a month and a half now and I think I feel better? I’ve been able to manage the stress/anxiety a lot better.In context ↗ | Mild | Escitalopram (Lexapro) |
| 2025-01-07 | Naltrexone helped fatigue but neurological symptoms continued 24/7Currently I am on naltrexone, which helps with the overall fatigue.In context ↗ | Mild | Low-dose naltrexone |
| 2025-03-18 | Ran out of LDN while starting fasting; DPDR doubled in intensityMy DPDR is now x2 as intense as usual and I’m not sure if it’s due to the LDN or the fast.In context ↗ | Mild | |
| 2025-10-03 | Said things were better after an online nervous-system programBetter, I have a recommendation for you. Check your messagesIn context ↗ | Mild | |
| 2025-11-21 | Steady Coach program was the only thing that helped; still light-headed, dizzy and light-sensitiveNah, an online group called the steady coach was the only thing that helped me.In context ↗ | Mild |
Adverse events
- Intermittent fasting“Didn't experience any positive change with my symptoms. I did get more anxious though. I think because I was stressing my body.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
the dysautonomia symptoms were unbarable
In context ↗ - Light & noise sensitivity
Light Sensitiviy
In context ↗ - Neuropathy & tingling
numbness of head
In context ↗ - Anxiety & low mood
I’ve been in a constant state of panic ever since.
In context ↗ - Brain fog
I mainly suffer from DPDR, light headedness, light sensitivity, and fatigue.
In context ↗
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