Bedbound for weeks with long COVID, somewhat better; credits Nurosyn device
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 1 year
- Last post
- Aug 2026
In their words
- Condition: Long COVID
After getting COVID, overhead lighting triggers/worsens my symptoms.
In context ↗ - At worst: Moderate
having to stop doing something I enjoy for a short time to go rest for the remainder of the day so I don't become bedbound for weeks again
In context ↗ - Now: Somewhat better
I am not completely recovered by any stretch, but I actually feel much more like myself now. ... Seven months later and I'm still worse than I was before I started it.
- Began after: COVID
After getting COVID, overhead lighting triggers/worsens my symptoms.
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
Bluebell 15385 fell ill with long COVID in fall 2022, unable to understand written words for over a year and bedbound for weeks after activity. After about 18 months they could read print books again, crediting a Nurosyn vagus nerve stimulation device received at Christmas 2023 with helping many symptoms, though not fully recovered. A month-long trial of a medication in December 2025/January 2026 destroyed their deep sleep and left them worse seven months after stopping.
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What they tried
What they credit
Also tried
Their words about each treatment
- water mixed with Normalyte powder · Helped a lot
Drinking water mixed with Normalyte powder has had the biggest positive impact for my symptoms.
In context ↗ - cromolyn sodium · Helped
I need to drink cromolyn sodium with every meal or I get bad GI symptoms.
In context ↗ - word and number puzzles · Helped
The puzzles especially have helped me regain more of my mental capacities I think.
In context ↗ - Vyvanse · Helped
I find Vyvanse to be better for my anxiety than Adderall.
In context ↗ - Nurosyn vagus nerve stimulation device · Helped a lot
I started to improve a lot faster after I began using a vagus nerve stimulation device I received for Christmas 2023.
In context ↗ - pacing · Helped
having to stop doing something I enjoy for a short time to go rest for the remainder of the day so I don't become bedbound for weeks again
In context ↗ - quercetin · Helped
I also take quercetin nightly and extra during flares
In context ↗ - Allegra · Helped
Those plus daily OTC antihistamines (Allegra and Pepcid, which are H1 and H2 histamine blockers) generally keep my MCAS overall calmer
In context ↗ - LDN · Much worse
It destroyed my deep sleep and made me so much worse.
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Antihistamines & MCAS · Supplements · Vagus nerve stimulation
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| fall 2022 | long COVID onset; could not understand written words, bedbound for weeks after activityI became such in the fall of 2022. ... the year+ when I couldn't understand written words well anymore ... so I don't become bedbound for weeks again | |
| December 2023 | started vagus nerve stimulation and improved fasterI started to improve a lot faster after I began using a vagus nerve stimulation device I received for Christmas 2023.In context ↗ | Vagus nerve stimulation |
| June 2024 | able to read print books again; felt more like themselvesAfter 18 months, I can finally read print books again. ... I actually feel much more like myself now. | Vagus nerve stimulation |
| December 2025 | low-dose naltrexone wrecked their sleep and made them much worseIt destroyed my deep sleep and made me so much worse.In context ↗ | |
| August 2026 | still worse than before naltrexone, seven months after stoppingSeven months later and I'm still worse than I was before I started it.In context ↗ |
Adverse events
- Low-dose naltrexone“It destroyed my deep sleep and made me so much worse.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“Seven months later and I'm still worse than I was before I started it.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
which helps with many symptoms including brain fog
In context ↗ - Post-exertional malaise
so I don't become bedbound for weeks again
In context ↗ - Light & noise sensitivity
After getting COVID, overhead lighting triggers/worsens my symptoms.
In context ↗ - Gut problems
I need to drink cromolyn sodium with every meal or I get bad GI symptoms.
In context ↗ - Mast cell (MCAS) & allergies
My main MCAS medication is cromolyn sodium, taken 4x/day.
In context ↗ - Anxiety & low mood
I find Vyvanse to be better for my anxiety than Adderall.
In context ↗
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