Long COVID
Severe → no benefitIll for 13 monthsNeeds ongoing treatment
Long COVID with hyperPOTS, MCAS and fight-or-flight, no benefit
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 13 months
- Last post
- Dec 2022
In their words
- Condition: Long COVID
Long hauling for over a year been hell with Hyperpots and MCAS
In context ↗ - At worst: Severe
have literally zero quality of life and be bedbound basically
In context ↗ - Now: No benefit
it’s getting worse with spasms and angina
In context ↗ - Began after: COVID
can’t relax for the life of me since July covid
In context ↗
Read from 16 of their posts and comments; links to the 11 this page draws on
Summary
Hawk 85699 fell ill with long COVID in July 2021 and spent months with hyperPOTS, MCAS and constant fight-or-flight, calling their quality of life zero. Xanax as needed was the only early relief; guanfacine 1 mg morning and night made them functional again in August 2022. A flu in October 2022 briefly restored their pre-COVID self, then symptoms returned, and by December they still had chest spasms and angina that were getting worse.
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What they tried
Also tried
Their words about each treatment
- Xanax · Helped
benzo is the only thing that makes me feel normal again
In context ↗ - Pepcid · Worse
Pepcid gave me terrible pvc/arrhythmias heart palpitations it was scary. Took for 10 days before realizing that was causing it.
In context ↗ - meditation · No change
I’ve tried literally everything else- meditation, acupuncture, chiropractor, infusions, supplements, etc and benzo is the only thing that makes me feel normal again
In context ↗ - acupuncture · No change
meditation, acupuncture, chiropractor, infusions, supplements, etc and benzo is the only thing that makes me feel normal again
In context ↗ - beta blocker · Helped
Beta blocker helps with the angina and pots.
In context ↗ - Guanfacine · Helped a lot
Yes Guanfacine has been a game changer for me too. Take 1mg at night and 1mg in the morning and finally am functional and not in fight or flight 24/7 anymore
In context ↗ - fast walk for 20 mins · Worse
I just exercised (fast walk for 20 mins) for first time in over 6 months and day after I had constant PVCs.
In context ↗ - Diltiazem · Helped
Diltiazem has helped but doc said we can add on Ranexa if need be.
In context ↗
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 |
|---|---|---|
| 2021-07 | long COVID after covid infectioncan’t relax for the life of me since July covidIn context ↗ | |
| 2022-03 | COVID reinfection set them backI’m going on 7 months but got reinfected a month ago so it kinda set me backIn context ↗ | |
| 2022-04-06 | diagnosed with MCAS and hyperPOTS; Xanax as needed helpedthe only thing that has helped through the months is Xanax prnIn context ↗ | Alprazolam (Xanax) |
| 2022-08-08 | guanfacine made them functional, calmerYes Guanfacine has been a game changer for me too. Take 1mg at night and 1mg in the morning and finally am functionalIn context ↗ | Guanfacine |
| 2022-10-13 | flu briefly brought back pre-COVID selfnow I oddly feel kinda pre Covid self surprisinglyIn context ↗ | |
| 2022-10-14 | flu benefit wore off, LC symptoms returnedI’m already getting some LC symptoms back now so clearly just temporarilyIn context ↗ | |
| 2022-12-28 | endothelial dysfunction worsening with spasms and anginaas it’s getting worse with spasms and anginaIn context ↗ |
Adverse events
- Famotidine (Pepcid)“Yes Pepcid gave me terrible pvc/arrhythmias heart palpitations it was scary. Took for 10 days before realizing that was causing it.” In context ↗ Heart rhythm problems
- Alprazolam (Xanax)“I know the withdrawals and everything and hate it I’ve done it before” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- POTS & dysautonomia
I finally after 7 months post covid got diagnosed with mcas and also hyperpots too by a doctor
In context ↗ - Mast cell (MCAS) & allergies
got diagnosed with mcas and also hyperpots too by a doctor
In context ↗ - Heart symptoms & palpitations
day after I had constant PVCs
In context ↗ - Anxiety & low mood
I’m constantly in fight or flight and stressed/tense and can’t relax for the life of me
In context ↗ - Post-exertional malaise
I just exercised (fast walk for 20 mins) for first time in over 6 months and day after I had constant PVCs
In context ↗