Long COVID
Moderate → somewhat betterIll 3.5 years before improving or writingNeeds ongoing treatment
Long COVID with POTS, insomnia, brain fog; somewhat better after propranolol, house move
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3.5 years
- Last post
- Feb 2025
In their words
- Condition: Long COVID
First time September 2020, long COVID
In context ↗ - At worst: Moderate
I've now been unable to work most of this year ... I've cut out all activity and am just sitting on my butt in the house all day
- Now: Somewhat better
The insomnia is better. Not gone, but better. ... The brainfog is somewhat improved.
- Began after: COVID
I got COVID before there was a vaccine in 2020 and had the LC symptoms, but they improved over 6 months or so.
Read from 122 of their posts and comments; links to the 41 this page draws on
- Jan 2023
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Summary
A UK doctor developed long COVID after a September 2020 infection, improved over 18 months, then an April 2022 reinfection left her far worse, with disabling insomnia, brain fog, POTS and right-sided head, ear and nose pain. She gave up work and her master's; propranolol helped her POTS. After a house move in 2024, the worst of the insomnia ended, and by early 2025 head pain and brain fog had improved, though sleep stayed unrefreshing.
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What they tried
What they credit
Also tried
moved house· Helped a lotfluoxetine (Prozac)· Helpedpropranolol· Helpedmelatonin· Helped · wore offzopiclone· Helpedbenzodiazepines (alprazolam, triazolam)· Helpedbenzodiazepines (alprazolam, triazolam)· Helpedlimiting my exertion· Helpedbrain-intensive activities lying down· HelpedCoQ10· Helpedsleeping with heating off / cold bedroom· Helpedtime· Helpedmanual pressure· Helpedeating / porridge· HelpedCBD· No changemagnesium· No changeB vitamins· No changemigraine medications· No changeCOVID vaccines / booster· No changeflu shot· No changesleep hygiene· No changerelaxation/meditation· No changesertraline· WorseElvanse/Vyvanse (ADHD meds)· Worseantihistamines· Worsemirtazapine· Worsenasal steroid spray· Worsesinus rinses· Worsebaby aspirin· Worseexercise / powering through· Worsepainkillers· Not said
Their words about each treatment
- fluoxetine (Prozac) · Helped
I've just started on fluoxetine (Prozac). The brain fog is much better after 10 days.
In context ↗ - sertraline · Worse
I did horribly on sertraline years back and it gave me insomnia, but fluoxetine was great for me.
In context ↗ - propranolol · Helped
I feel soooo much better since I started propranolol got my POTS.
In context ↗ - Elvanse/Vyvanse (ADHD meds) · Worse
When I got LC I could no longer tolerate it due to exaggerated tachycardia (fast heart rate) and palpitations.
In context ↗ - melatonin · Helped
It worked for about 2 weeks for me and then stopped.
In context ↗ - antihistamines · Worse
Antihistamines actually make my insomnia worse.
In context ↗ - mirtazapine · Worse
antihistamines and mirtazapine make the physical illness from feeling so tired worse but still don't put me to sleep
In context ↗ - CBD · No change
even tried CBD which did nothing for it either.
In context ↗ - magnesium · No change
I've tried magnesium, it helps my restless legs but nothing else.
In context ↗ - B vitamins · No change
B vitamins did nothing.
In context ↗ - zopiclone · Helped
Zopiclone (another drug in the same class as zolpidem, haven't tried zolpidem) is the only thing that gets me sleep
In context ↗ - benzodiazepines (alprazolam, triazolam) · Helped
The only things that get me to sleep are z-drugs and benzos
In context ↗ - nasal steroid spray · Worse
I had a nasal steroid spray, but it made the headaches worse so I stopped using it.
In context ↗ - migraine medications · No change
Tried migraine medications, antihistamines, nasal steroids, none of them helped.
In context ↗ - painkillers · Not said
It's so painful that I have to take painkillers throughout the day just to be able to function.
In context ↗ - sinus rinses · Worse
But I tried doing sinus rinses and it reproduced the original stabbing pain.
In context ↗ - baby aspirin · Worse
I tried starting baby aspirin but gave myself gastritis so the famotidine with it sounds like a good shout.
In context ↗ - limiting my exertion · Helped
I've seen the same pattern in my RHR and am doing something similar in trying to limit my exertion. It's not hurting and might even be helping.
In context ↗ - resting as much as possible · Helped
I made a gradual improvement over the summer until the end of September by resting as much as possible and was maybe at 60%
In context ↗ - exercise / powering through · Worse
I will feel OK and hop on the treadmill one day and have a relapse until it happens again several months later.
In context ↗ - brain-intensive activities lying down · Helped
I saw a suggestion that the brain fog may be exacerbated by dysautonomia and it might therefore help to try doing brain-intensive activities lying down. It actually seemed to help
In context ↗ - CoQ10 · Helped
The brainfog is somewhat improved. I think CoQ10 supplements have made a difference, although it could just have been time.
In context ↗ - moved house · Helped a lot
It suddenly remitted after I moved house last year (literally overnight).
In context ↗ - sleeping with heating off / cold bedroom · Helped
Temperature seems to be a factor; if I sleep with the heating off so it's cold in the bedroom then it is somewhat better.
In context ↗ - time · Helped
Mine FINALLY suddenly remitted overnight at 2 years and 1 month since the initial infection.
In context ↗ - COVID vaccines / booster · No change
I've had 3 vaccines and none made a difference to my symptoms.
In context ↗ - flu shot · No change
I got it, stayed the same.
In context ↗ - sleep hygiene · No change
Sleep hygiene does f-all
In context ↗ - relaxation/meditation · No change
relaxation/meditation calm me but my mind stays wide awake
In context ↗ - manual pressure · Helped
Yes, I've found that applying manual pressure to the affected area relieves the symptoms somewhat, but obviously it isn't practical to do this all the time.
In context ↗ - eating / porridge · Helped
I find eating helps nausea. I usually have a bowl of porridge pretty soon after I wake up.
In context ↗
Approaches: Radical rest
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 chart starts 18 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2020 | first COVID infection; long COVID symptoms beganStill in the thick of it following a September 2020 initial infection, but I was reinfected in April 2022 and possibly again the following October.In context ↗ | Not stated | |
| March 2022 | illness almost gone after 18 monthsI was getting considerably better by March 2022 before I got infected again, so I still have hope.In context ↗ | Near normal | Time and spontaneous remission |
| April 2022 | reinfection made every symptom far worseFirst time September 2020, long COVID, was getting somewhat better finally start of 2022, got COVID again April 2022, came back worse than ever before.In context ↗ | Moderate | |
| January 2023 | moved to a non-clinical desk job working partial days from homeI'm doing what I can (mainly partial days, in a desk job, from home) just to keep some money coming in.In context ↗ | Moderate | |
| May 2023 | stopped working after a month off did not helpI took a month off because I thought it might improve a bit. It didn't. Coming to terms with the fact I can't work anymore.In context ↗ | Moderate | |
| May 2023 | propranolol relieved POTS and palpitationsI feel soooo much better since I started propranolol got my POTS.In context ↗ | Moderate | Propranolol (Inderal) |
| September 2023 | gradual improvement to about 60% by resting as much as possibleI made a gradual improvement over the summer until the end of September by resting as much as possible and was maybe at 60%In context ↗ | Mild | Pacing and the energy envelope |
| October 2023 | relapse with no apparent trigger, back to the bottomI relapsed again at the start of this month for no apparent reason and am now at the bottom again.In context ↗ | Moderate | |
| November 2023 | pregnancy brought a sudden overnight improvementinitially they got a lot BETTER, miraculously, overnight, as soon as I got pregnantIn context ↗ | Not stated | |
| December 2023 | pregnancy improvement reversed after about a monthAfter about a month, they got a lot worse again to the point where it's as bad as it has been since my reinfectionIn context ↗ | Moderate | |
| December 2023 | brain fog better within 10 days of starting fluoxetineI've just started on fluoxetine (Prozac). The brain fog is much better after 10 days.In context ↗ | Moderate | |
| April 2024 | insomnia suddenly remitted overnight after moving houseIt suddenly remitted after I moved house last year (literally overnight).In context ↗ | Mild | Relocation and environmental change |
| February 2025 | head pain and brain fog much better, sleep better but still unrefreshingMy sleep is still unrefreshing but I am not unable to fall asleep every night anymore.In context ↗ | Mild |
Adverse events
- H1 antihistamines (unspecified)“antihistamines and mirtazapine make the physical illness from feeling so tired worse but still don't put me to sleep” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified), Fluoxetine (Prozac), Sertraline (Zoloft), Mirtazapine (Remeron)“antihistamines and mirtazapine make the physical illness from feeling so tired worse but still don't put me to sleep” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“I get horrible tachycardia from it now so can only take a tiny dose.” In context ↗ Heart rhythm problems
- Lisdexamfetamine (Vyvanse, Elvanse)“When I got LC I could no longer tolerate it due to exaggerated tachycardia (fast heart rate) and palpitations. I tried cutting my dose but was still having issues with 10mg so had to stop entirely.” In context ↗ Heart rhythm problems
- Propranolol (Inderal)“I already suffer from resting bradycardia so it made me feel very unwell because my heart rate got too slow and I had to stop.” In context ↗ Heart rhythm problems
- Propranolol (Inderal)“I had to stop propranolol because my pulse and blood pressure were in my boots, so to speak. Like, no good not having the palpitations if you're passing out all the time.” In context ↗ Low blood pressure or fainting
- Propranolol (Inderal)“Unfortunately I'm also one of those who gets insomnia as a side effect of propranolol...” In context ↗ Insomnia from treatment
- Sertraline (Zoloft)“I did horribly on sertraline years back and it gave me insomnia” In context ↗ Insomnia from treatment
- Alprazolam (Xanax), Benzodiazepines (unspecified)“I can get some sleep if I take benzos or z-drugs but they make me feel awful the next day and they shouldn't be taken often due to the potential for dependence.” In context ↗ Side effects
- H1 antihistamines (unspecified)“Also tried antihistamines (did nothing except make me feel physically ill as well as not being able to fall asleep)” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified)“Antihistamines actually make my insomnia worse.” In context ↗ Insomnia from treatment
- Steroid nasal sprays (unspecified)“I had a nasal steroid spray, but it made the headaches worse so I stopped using it.” In context ↗ Made symptoms worse
- Aspirin“I tried starting baby aspirin but gave myself gastritis” In context ↗ Gut side effects
- Aspirin“I tried baby aspirin on its own and just gave me gastritis, lol.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Sleep problems
My sleep is still unrefreshing but I am not unable to fall asleep every night anymore.
In context ↗ - Brain fog
The brainfog is somewhat improved.
In context ↗ - POTS & dysautonomia
I had crazy POTS-type symptoms in the beginning that seem to have calmed down a bit too
In context ↗ - Heart symptoms & palpitations
Now if I have more than 1/10 my prior dose of meds I get horrible palpitations and tachycardia.
In context ↗ - Headaches & migraine
the headaches... oh, the headaches. I want to claw my face off most of the time
In context ↗ - Post-exertional malaise
I always feel better immediately following exercise, but my symptoms get worse 12-24h later.
In context ↗ - Anxiety & low mood
I was already pretty anxious so my baseline is quite high.
In context ↗ - Temperature regulation
temperature dysregulation
In context ↗ - Vision problems
right eye pain, floaters
In context ↗ - Gut problems
I find eating helps nausea.
In context ↗
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