Long COVID with POTS and brain fog, bedridden at times, much better with time and waiting
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Aug 2024
In their words
- Condition: Long COVID
I started experiencing long covid in April 2022.
In context ↗ - At worst: Moderate
I went on a 30 minute walk today and my heart only went to 137! I’ve been pretty bed ridden the last two weeks or so
In context ↗ - Now: Much better
I had all the classic POTS/dysautonomia symptoms and had episodes of SVT and adrenaline dumps. However, that has greatly lessened within the last year.
In context ↗ - Began after: COVID
I had very mild COVID in January this year and then started getting long haul symptoms in April.
Read from 47 of their posts and comments; links to the 30 this page draws on
Summary
Tide 14717 developed long COVID in April 2022, three months after a mild COVID infection, with POTS, heart-rate spikes, breathlessness and brain fog. Relapses after overexertion, and a cold, set her back; at times she was bedridden for about six days or two weeks. She credited time and waiting rather than supplements; cardiac symptoms eased through 2023, though a reinfection brought new throat and chest tightness. By 2024 her long COVID dysautonomia had greatly lessened, but she was diagnosed with ITP and had MRI lesions consistent with MS, pending confirmation.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- light exercise · Helped
honestly LIGHT exercise. I’m talking light walks and stretching when you’re feeling up to it
In context ↗ - splashing cold water on my face · Helped
I mixed it with ice compression on my face and neck and it was a game changer!!
In context ↗ - supplements · No change
I actually found that supplements didn’t really help me as I wasn’t deficient in anything
In context ↗ - vagus nerve exercises · Helped
I tried the procedure you mentioned and it works! My heart hasn’t gone above 122 today so that’s awesome.
In context ↗ - yawning · Helped
The yawning really helped! Thank you so much!
In context ↗ - hydration · Helped
Hydration has been making all the difference!!!
In context ↗ - vitamin c · Not said
I have definitely been slacking on my vitamin c intake this week!!
In context ↗ - cut out gluten, caffeine, and chocolate · Not said
I’ve also cut out gluten, caffeine, and chocolate
In context ↗ - resting · Helped
after my relapse I rested for about a month and now feel much better
In context ↗ - time · Helped a lot
Time and acceptance seem to be the number one helpers for me
In context ↗ - ventolin · No change
my ventolin does not help
In context ↗ - Claritin · No change
I’m also taking Claritin but I don’t think it’s doing anything
In context ↗ - steroid pack · Helped
I also took a steroid pack that helped at first but then as soon as I stopped taking it, the symptoms came back
In context ↗ - PPI · No change
I also have just started taking a PPI because my ENT saw evidence of acid reflux on my vocal cords. But it’s only been a few days and so far no dice.
In context ↗ - ginger tea with honey · Helped
Some things that helped me have been using electrolytes in my water, LOTS of water, ginger tea with honey
In context ↗
Approaches: POTS medication · Exercise and activity · Pacing · Supplements
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 |
|---|---|---|
| April 2022 | long COVID onset after a mild January infectionThen suddenly in April I was under immense stress and my mom was hospitalized and then bam I suddenly was disabled by these LC symptomsIn context ↗ | |
| September 2022 | relapse after mild exercise with heart-rate spike; bedridden six daysI was doing so much better literally a week ago and now I’m back at square one.In context ↗ | |
| September 2022 | back to 75-80% of herself after the relapseI’ve been feeling about 75%-80% myself since then, so better than before my relapse!In context ↗ | |
| December 2022 | flare back to month-1 level; bedridden about two weeksI’m on month 7 and was doing almost 90% better until two weeks ago when it was suddenly like month 1 again.In context ↗ | |
| December 2022 | 30-minute walk with heart rate only 137 after two weeks bedriddenI went on a 30 minute walk today and my heart only went to 137!In context ↗ | |
| January 2023 | rested about a month after a relapse and felt much betterafter my relapse I rested for about a month and now feel much better so I will say it wasn’t as severe as previous LCIn context ↗ | Time and spontaneous remission |
| April 2023 | flare after three weeks of feeling normalI felt pretty normal for 3 weeks and even considered trying alcohol again. But of course the day after that thought occurred I had another flare.In context ↗ | |
| July 2023 | cardiac symptoms much better since AprilI noticed after April this year my cardiac symptoms have been doing a lot betterIn context ↗ | Time and spontaneous remission |
| November 2023 | COVID reinfection with new throat and chest tightnessI was doing really well in terms of recovery in the summer and then got reinfected and now I have an array of new long haul symptoms.In context ↗ | |
| January 2024 | sudden one-sided loss of coordination while pretty much recoveredI was pretty much recovered when this hit.In context ↗ | |
| February 2024 | coordination problem resolved; felt normal againBut I think everything is fine and I feel normal nowIn context ↗ | |
| June 2024 | very low platelets; investigated for leukemiaI was actually doing a lot better from my long covid but this came on so suddenly and now I’m back at square oneIn context ↗ | |
| August 2024 | long COVID greatly lessened but diagnosed with MS and ITPnow that I feel almost normal I have TWO autoimmune diseasesIn context ↗ |
Adverse events
- “I got my ear flushed and that made me flare” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I think I relapsed because I started school full time again while also working and then I tried to exercise on top of that.
In context ↗ - Brain fog
My weird brain fog and visual issues seem to be the most prominent symptoms that I’m still having.
In context ↗ - POTS & dysautonomia
I originally had pots/dysautonomia and still have mild symptoms of that
In context ↗ - Mast cell (MCAS) & allergies
It’s like I suddenly become allergic to everything I eat for a couple of weeks afterwards
In context ↗ - Pain & fibromyalgia
fatigue, and pain in my chest bones
In context ↗ - Headaches & migraine
I get a bad migraine usually every other month or so
In context ↗ - Gut problems
get intense gas pains and shortness of breath that are only relieved when I burp a bunch
In context ↗ - Heart symptoms & palpitations
Maybe like one once in a blue moon now, but I used to get them almost daily.
In context ↗ - Muscle weakness
weakness, internal and external tremors
In context ↗ - Anxiety & low mood
I’ve started having extreme death anxiety to the point that I’m scared to go to sleep.
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID breathlessness and brain fog, propranolol helped, then Pfizer dose relapse
A 21-year-old woman developed long COVID in September 2020 with breathlessness, tachycardia, brain fog and fatigue, leaving her doing little for months. Propranolol, started at month 9, was her biggest game changer; she reached about 85-95% of normal, worked…
-
Long COVID weight loss, insomnia and racing heart, now much better after a beta blocker
Moon 94414 fell ill with long COVID in 2023, six weeks after a Covid infection, and by month five had lost a lot of weight and had insomnia and a racing heart. A beta blocker, electrolytes, the contraceptive pill, probiotic foods and later HRT eased their…
-
Long COVID with brain fog and dizziness, now recovered after time and rest
A previously healthy 16-year-old developed long COVID in December 2021, with palpitations, breathlessness, brain fog, head pressure, visual disturbances, dizziness and night-time waking gasps. They took aspirin on bad days and no supplements, crediting daily…
-
Not enough detail to draw a path
Long COVID unable to sit up all day, somewhat better with pacing and MCAS treatment
Glacier 65919 developed ME/CFS-type long COVID after a September 2022 infection and was largely unable to sit up or work all day at worst. Pacing, rest, time off work, better sleep, antihistamines and MCAS treatment brought slow gains amid crashes and…