Long COVID insomnia and POTS/MCAS flares, somewhat better with time and low-histamine diet
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 14 months
- Last post
- Jan 2025
In their words
- Condition: Long COVID
Since the last day of my acute Covid infection I have had severe insomnia.
In context ↗ - At worst: Moderate
I cannot manage more than sitting around the house on most days. Also had to give up my job.
In context ↗ - Now: Somewhat better
I’m over a year in and still haven’t fully managed it ... I do sleep 6 hours or so most nights now.
In context ↗
Read from 37 of their posts and comments; links to the 13 this page draws on
Summary
Crest 52334 developed long COVID in November 2023 with relentless insomnia and flares of her MCAS and POTS. For the first month she went 72 hours without sleep and got 1-3 hours a night, giving up her job and PhD. Time, a strict low-histamine diet, morning walks, vitamin D, sleep-coaching videos and temazepam twice a week slowly brought her to about six hours a night; by month 8 she felt mostly recovered but still needed benzos weekly.
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What they tried
What they credit
Also tried
Their words about each treatment
- beta blockers · No change
I have had a great experience with beta blockers but I have taken them my whole life and they haven’t really done anything for long Covid or pots
In context ↗ - temazepam · Helped
on sleepless nights its a real life saver ... I have taken it for 3 months now twice a week
In context ↗ - low histamine diet · Helped a lot
This cleared up every symptom except the insomnia.
In context ↗ - vitamin D · Helped
I have been taking 1000iu in a gel cap every day ... not sure how much this helped but it certainly did not hurt
In context ↗ - Melatonin · Worse
This did not get me to sleep, and it caused some severe bradycardia (I already take a beta blocker so it made me really dizzy)
In context ↗ - Dayvigo · Worse
This medication did not make me fall asleep and also gave me chest pain
In context ↗ - Zopiclone · Worse
I took this once, and it did get me 4 hours which was nice, but unfortunately I had an allergic/mast cell reaction to it
In context ↗ - compression stockings · Helped
Try to wear compression stockings during the day when walking around. 20-30 mmhg. This improved my heart rate values.
In context ↗ - Daniel Erichson's Sleep Coach School · Helped
Watching these videos helped me a lot and reframed how I think about sleep.
In context ↗ - ear plugs and eye mask · Helped
I have a dog, and I do not have blackout curtains. This has helped a bit
In context ↗ - yoga nidra · Helped
I looked up a guided yoga nidra on youtube if I have layed in bed for more than 2 hours and it gets me to sleep over half the times I try it!
In context ↗ - no electronics after 6:30pm · Helped
The only electronics I use after 6:30pm is the TV ... I find I need wind down time now
In context ↗ - getting off Reddit · Helped
Getting off reddit and stopping researching stuff ... you give yourself your best chance at recovery by not thinking about it too much
In context ↗ - avoiding anxiety inducing situations · Helped
Avoid anxiety inducing situations ... All of this can impact your sleep
In context ↗ - juice fast · Not said
it’s hard to say if it was related to the fasting (I haven’t eaten other than juices and oat milk in 5 days)
In context ↗ - lorazepam · Not said
I kept so many temazepam on hand as I found it more helpful than lorazepam
In context ↗ - lunesta · Worse
do not villainize benzos, in my experience they are the only thing that helps along with lunesta which I was allergic to
In context ↗
Approaches: Diet · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| November 2023 | COVID followed by 72-90 hours without sleep, then 1-3 hours a night for a month; gave up job and PhDRight after the acute phase I went 72 hours without sleepIn context ↗ | Moderate | |
| December 2023 (month 1) | sleep rose to about 4 hours a night with two sleepless nights a weekAfter a month I began averaging 4 hours a night, with around 2 fully sleepless nights a week.In context ↗ | Moderate | |
| February 2024 (month 3) | averaging 5-5.5 hours a nightAfter another month I began to averaged 5-5.5 hours a night and it stayed like this until month 3.In context ↗ | Moderate | |
| March 2024 (month 4) | averaging 6-6.5 hours a night after low histamine diet and sleep changesnow that I’m hitting month 4 I’m averaging 6-6.5In context ↗ | Mild | Low-histamine diet |
| late May 2024 | sleepiness returned after an ovarian cyst rupture and flu-like illness; 7-8 hours a nightI’ve been sleeping 7-8 hours a night since and am able to return to sleep after waking.In context ↗ | Mild | |
| August 2024 | mostly fully recovered by month 8-10in month 8-10 I am mostly fully recoveredIn context ↗ | Near normal | |
| January 2025 | sleeps about six hours most nights but still uses benzodiazepines twice a weekI do sleep 6 hours or so most nights now.In context ↗ | Mild |
Adverse events
- Lemborexant (Dayvigo)“This medication did not make me fall asleep and also gave me chest pain” In context ↗ Side effects
- Melatonin“This did not get me to sleep, and it caused some severe bradycardia (I already take a beta blocker so it made me really dizzy)” In context ↗ Heart rhythm problems
- Zopiclone (Imovane)“I had an allergic/mast cell reaction to it and it caused difficulty swallowing and face swelling” In context ↗ Allergic reaction / anaphylaxis
- Eszopiclone (Lunesta)“along with lunesta which I was allergic to” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I’m over a year in and still haven’t fully managed it.
In context ↗ - Mast cell (MCAS) & allergies
Covid gave me MCAS
In context ↗ - POTS & dysautonomia
long covid brought it back and now I also have MCAS
In context ↗ - Neuropathy & tingling
I think MCAS is the root cause of my pots and SIBO and neuropathy.
In context ↗ - Anxiety & low mood
Covid fucked my sleep too but also fixed my depression.
In context ↗ - Temperature regulation
it stopped midnight glucose crashes and cold sweats
In context ↗
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