Years largely in bed with long COVID, now much better with antihistamines and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
withdrawing greatly exacerbated my long covid
In context ↗ - At worst: Severe
I was in bed for several years because I pushed myself and then crashed.
In context ↗ - Now: Much better
Nowadays, even though I have limited physical and mental energy, I can still do a lot. I can work on the computer for hours straight and go on mile long walks
In context ↗
Read from 28 of their posts and comments; links to the 15 this page draws on
Summary
Vale 99696 has long COVID with screen intolerance and nervous-system overstimulation; they spent several years largely in bed after pushing through crashes. H1 antihistamines, radical rest, pacing and time helped gradually; by late 2024 they could work on a computer for hours and walk a mile, though daylight light sensitivity remains.
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What they tried
What they credit
Also tried
Their words about each treatment
- b12 · Worse
Yes b12 is definitely overstimulating. I couldn’t take it until my nervous system calmed down after a year or so.
In context ↗ - benfotiamine · Helped
I felt instantly better from taking a small amount of benfotiamine, more than any other supplement, but couldn’t sleep
In context ↗ - b complex · Worse
B complex amps me up but doesn’t cause insomnia like Benfotiamine.
In context ↗ - Benzos · Not said
I started with taking Benzos to calm down my nervous system and then tried to go off them.
In context ↗ - Allegra / Zyrtec (H1 antihistamines) · Helped a lot
When I started taking 24 hour Allegra I became much stronger and could talk and laugh a litttle.
In context ↗ - h2 · No change
I took a h2 but it didn’t really work that well with me.
In context ↗ - L phenylalanine · Helped
L phenylalanine on an empty stomach every morning helps with my brain fog.
In context ↗ - Intermittent fasting · Helped
Intermittent fasting everyday and electrolytes help as well.
In context ↗ - radical rest · Helped
Only time, radical rest, and pacing helped.
In context ↗ - time · Helped
I think time helps to calm an overstimulated nervous system ... more than any supplement, resting and time.
- essential oils (lavender, vetivert) · Helped
Lavender, vetivert, and other calming ones really helped me calm down.
In context ↗ - black seed oil · Helped
I did try black seed oil for a bit and I think it does help.
In context ↗ - TTFD · Helped
Instead I take TTFD, a different form of thiamine, which doesn’t cause insomnia and I believe is helping me.
In context ↗
Approaches: H1 antihistamines · POTS medication · Diet · Pacing · Radical rest · Supplements
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. The first step with a time is 3 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021-2023 | in bed for several years after pushing through crashesI was in bed for several years because I pushed myself and then crashedIn context ↗ | Severe | |
| 2023-12 | stronger and able to talk a little after starting antihistaminesWhen I started taking 24 hour Allegra I became much stronger and could talk and laugh a litttle.In context ↗ | Severe | |
| 2024-04 | could use phone for hours and talk for an hour or moreI now can look at my phone for hours everyday and talk to people for an hour or more.In context ↗ | Mild | |
| 2024-09 | works on computer for hours and walks a mile, still avoids daylightI can work on the computer for hours straight and go on mile long walks etc.In context ↗ | Mild | Time and spontaneous remission |
Adverse events
- Thiamine / benfotiamine“I felt instantly better from taking a small amount of benfotiamine, more than any other supplement, but couldn’t sleep (even when I take it in the morning.)” In context ↗ Insomnia from treatment
- Vitamin B12“Yes b12 is definitely overstimulating. I couldn’t take it until my nervous system calmed down after a year or so.” In context ↗ Side effects
- Vitamin B12“B complex amps me up but doesn’t cause insomnia like Benfotiamine.” In context ↗ Side effects
- Benzodiazepines (unspecified)“For me, withdrawing greatly exacerbated my long covid to the point I gave up trying to come off.” In context ↗ Withdrawal problems
- Fexofenadine (Allegra), Cetirizine (Zyrtec)“Like everything I take to try and help me, it’s overstimulating to my nervous system. So I take a very very small amount.” In context ↗ Side effects
- DLPA / phenylalanine“If I take too much, it’s too overstimulating.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
There was point where even going to the bathroom, or checking the time on my phone would cause PEM
In context ↗ - Brain fog
L phenylalanine on an empty stomach every morning helps with my brain fog.
In context ↗ - Light & noise sensitivity
My light sensitivity is so bad I can’t go outside during the day even within really dark sunglasses.
In context ↗ - Mast cell (MCAS) & allergies
I guess I have mcas problems because Antihistamines helped me with a lot of the symptoms you described
In context ↗ - Neuropathy & tingling
I would walk and my hands would go numb or icy hot
In context ↗
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