Long COVID
Severe → relapsedIll 6 years before improving or writing
Long COVID with POTS: mostly bedbound, relapsed after remission; Xanax helped
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
Adding another ‘face’ to LC. 32F, sick since 9/2020.
In context ↗ - At worst: Severe
now mostly bedridden and housebound
In context ↗ - Now: Relapsed
I’ve been sick 5 years, ‘recovered’ once (I call it remission, not recovery) but then I went downhill again and never got better again, only worse. I don’t think I’ll recover at this point.
In context ↗ - Began after: COVID
I initially developed POTS after having covid in 2020
Read from 196 of their posts and comments; links to the 72 this page draws on
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Summary
Fell ill with long COVID in September 2020 at about 30; a month of migraines and dizziness followed by four months of cardiac symptoms gave way to a six-month remission, then an overnight relapse in September 2021 brought POTS and dysautonomia. Reinfections and boosters worsened her, leaving her mostly bedridden and housebound by 2023. Zoloft, started in 2026, was only okay and slightly eased anxiety, while Xanax helped adrenaline dumps and was the only way she could drive; she remained mostly bedbound.
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What they tried
What they credit
Also tried
combo birth control pill· Helped a lotXanax (alprazolam)· HelpedFlonase· Helpedalcohol· Helped · wore offcarnivore / high-protein red meat diet· Helped · wore offcarnivore / high-protein red meat diet· Helped · wore offLamictal· HelpedExcedrin· Helpedoral liposomal NAD+· Helped · wore offbio-identical progesterone· HelpedPepcid· Helped · wore offamino acids· Helped · wore offaspirin· No changeDNRS limbic retraining· No changeCBD· No changeZyrtec (H1 antihistamine)· No changeI-RECOVER protocol· No changecurcumin· No changecompression· No changefludrocortisone· No changerecumbent exercise· No changeminoxidil· No changespike protein detox stack· No changepropranolol, metoprolol· Worsepropranolol, metoprolol· Worseprednisone· Worsemushrooms (psilocybin)· WorseLion’s mane and reishi· WorseNattokinase· Worsevitamin C IV drip· Worselumbrokinase· Worsemagnesium glycinate· Worseniacin· Worsefasting· WorseNAC· WorseMetformin· WorseLexapro· WorseEffexor (venlafaxine)· WorseWellbutrin· WorseZofran· Worsemelatonin· WorseCOVID vaccination as treatment· Worseexposure therapy· Much worseivabradine· Not saidbuspirone· Not saidWhey protein· Not saidFexofenadine (Allegra)· Not saidAshwagandha· Not said
Their words about each treatment
- yoga · Helped
Yes yoga helped me at one point, but it didn’t last.
In context ↗ - Xanax (alprazolam) · Helped
I’ve been on .25 Alprazolam for 4 years, it’s the only thing that gets rid of the insane adrenaline dumps in the mornings
In context ↗ - propranolol, metoprolol · Worse
I was already on a beta blocker but it doesn’t work well
In context ↗ - prednisone · Worse
I also can’t take prednisone anymore
In context ↗ - aspirin · No change
I’ve been on 81mg a day for a year and it does nothing
In context ↗ - DNRS limbic retraining · No change
I spent $600 on a DNRS limbic retraining program. It was the biggest waste of money and time ever
In context ↗ - CBD · No change
I was taking CBD but I felt no different, and sometimes if I took it too close to my beta blocker I felt like absolute garbage.
In context ↗ - cold therapy / Finnish winter · Helped
Cold therapy, but not necessarily ice baths did help me for a while.
In context ↗ - ivabradine · Not said
Beta blockers don’t seem to help anymore and I failed ivabradine.
In context ↗ - Montelukast (Singulair) · Helped a lot
Singulair was the only thing to make me feel beat 100%. I’m talking from bedbound to painting my whole house in one shot. But it came with the horrible psych effects so I had no choice but to stop.
In context ↗ - Zyrtec (H1 antihistamine) · No change
Didn’t help me but you probably have mild MCAS
In context ↗ - Flonase · Helped
zyrtec and Flonase kinda helps but Flonase long term is bad.
In context ↗ - mushrooms (psilocybin) · Worse
Mushrooms spike my heart rate far too high and fives extreme anxiety.
In context ↗ - I-RECOVER protocol · No change
Tried most of this, nothing helps.
In context ↗ - alcohol · Helped
A drink mixed with .25mg of Xanax was a godsend and I could get through an outing no problem. Now 5 sips of alcohol and I’m just sleeping.
In context ↗ - carnivore / high-protein red meat diet · Helped
Carnivore diet helps me. ... gave me a bleed in my eye
- curcumin · No change
Did absolutely nothing.
In context ↗ - Lion’s mane and reishi · Worse
Lion’s mane gave me horrible agitation and paranoia.
In context ↗ - Nattokinase · Worse
I attempted Nattokinase to try and break things up if any but it gave me very bad tachycardia
In context ↗ - vitamin C IV drip · Worse
a vitamin c drip made me feel like I was going to pass out and die
In context ↗ - compression · No change
despite all the supplements, beta blockers, DNRS (which is garbage), compression, etc.
In context ↗ - Lamictal · Helped
The only thing that helped were taking Lamictal (an epilepsy med) but had to stop because it was causing heart issues
In context ↗ - Excedrin · Helped
I can feel amazing after a dose of Excedrin for about an hour but then crash horrifically presumably from the caffeine.
In context ↗ - lumbrokinase · Worse
I just restarted lumbrokinase; a couple years ago it didn’t bother me but this time around I’m having *horrible* leg and foot pain.
In context ↗ - fludrocortisone · No change
I’m talking fludrocortisone, still no improvement
In context ↗ - magnesium glycinate · Worse
At 200mg I’m already heading to the toilet.
In context ↗ - exposure therapy · Much worse
I attempted exposure therapy to help my photophobia and it made it much worse.
In context ↗ - niacin · Worse
Taking niacin honestly sucks though
In context ↗ - radical rest · Helped
When everyone was out of town one weekend I radical rested for 2 days and felt so much better.
In context ↗ - fasting · Worse
The couple times I tried to fast my blood sugar dropped into the 30s. It’s too dangerous for me personally
In context ↗ - recumbent exercise · No change
my cardiologist said I can only do recumbent exercises but that’s not helping with the weight
In context ↗ - oral liposomal NAD+ · Helped
I was talking oral liposomal NAD+ for a year and it gave me mild energy. A few weeks ago it started making me feel terrible.
In context ↗ - supplemental oxygen · Helped a lot
I had a portable concentrator for awhile and it was a life saver. When I couldn’t access it anymore everything went to hell.
In context ↗ - bio-identical progesterone · Helped
Bio-identical progesterone has gotten rid of my PMDD but otherwise it does nothing for symptom relief
In context ↗ - combo birth control pill · Helped a lot
IMMENSELY. I developed horrible PMDD and the pill was necessary.
In context ↗ - NAC · Worse
NAC made it feel like my face was melting off
In context ↗ - Metformin · Worse
Metformin made me shit my brains out and tanked my blood sugar which made everything worse.
In context ↗ - Zoloft · Helped
Zoloft is the only thing that’s helped long term. I’ve tried numerous meds and this is the only thing that helped my horrible GI symptoms and adrenaline dumps, and mostly gotten rid of my vertigo.
In context ↗ - Lexapro · Worse
Lexapro made me barf and killed my libido.
In context ↗ - Effexor (venlafaxine) · Worse
Effexor made me want to kill people.
In context ↗ - buspirone · Not said
it took trialing through lexapro, venlafaxine, and buspirone before finding one that worked and that really sucked
In context ↗ - Pepcid · Helped
Pepcid helped for a bit but I haven’t found anything that works long term.
In context ↗ - Zofran · Worse
I haven’t had a totally solid bm since I took too much zofran a few months ago.
In context ↗ - melatonin · Worse
I took 5mg of melatonin last night at around 7pm, and I’ve felt horribly since.
In context ↗ - minoxidil · No change
I’ve tried minoxidil with no results
In context ↗ - amino acids · Helped
Amino acids helped for awhile
In context ↗ - spike protein detox stack · No change
Tried it, along with another detox stack. Didn’t work.
In context ↗ - low elevation / California, Finland · Helped
In the States I feel horrible unless I’m in California. I’ve figured out elevation makes a huge difference.
In context ↗ - COVID vaccination as treatment · Worse
the original booster sent me to the ER with massive exacerbation of symptoms
In context ↗ - Whey protein · Not said
Whey *annihilates* my GI tract so bad it’s almost necessary to go to the hospital for me.
In context ↗ - Fexofenadine (Allegra) · Not said
Allegra made me off balance and I fell a few times.
In context ↗ - Ashwagandha · Not said
Makes me feel awful. Like the opposite of a Xanax
In context ↗
Approaches: Hyperbaric & oxygen · SSRIs · Alternative therapies · Antihistamines & MCAS · Mind-body practices · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| September 2020 | COVID-19; daily migraines and dizziness, then cardiac symptomsInitially I was just dealing with migraines and dizziness everyday for a month. That went away and was replaced by cardiac symptoms for 4 months.In context ↗ | Mild |
| early 2021 | six-month remission, back to normal activity and travelinitially I was sick for 4 months and then it went away seemingly overnight and I was back to myself for 6 monthsIn context ↗ | Recovered |
| September 2021 | relapse overnight on a trip; POTS and dysautonomia appearedThen overnight 9/2021 I woke up nauseous and disoriented, my cardiac symptoms came back with a vengeance, and now I have POTS and dysautonomia.In context ↗ | Moderate |
| December 2022 | mostly in bed, constantly feeling like passing outCan’t get out of bed most days and constantly feel like passing out.In context ↗ | Severe |
| April 2023 | spiraled after reinfection; mostly bedridden and houseboundI was on the mend until then, now mostly bedridden and houseboundIn context ↗ | Severe |
| August 2026 | Zoloft eased GI symptoms, vertigo and adrenaline dumps; able to drive againZoloft, unfortunately. Fixed some GI issues and vertigo and made it possible to drive againIn context ↗ | Moderate |
Adverse events
- CBD (cannabidiol), Propranolol (Inderal), Metoprolol (Lopressor, Toprol)“I was taking CBD but I felt no different, and sometimes if I took it too close to my beta blocker I felt like absolute garbage.” In context ↗ Side effects
- Montelukast / Singulair“However the first 10mg dose gave me horrible panic and agitation, and it felt like I was on a really high dose of mushrooms.” In context ↗ Mood or psychiatric effects
- “Then after my booster I ended up in the ER.” In context ↗ ER visit
- COVID vaccination as treatment“the original booster sent me to the ER with massive exacerbation of symptoms” In context ↗ ER visit
- AHCC and medicinal mushrooms (reishi, shiitake, maitake)“Lion’s mane gave me horrible agitation and paranoia.” In context ↗ Mood or psychiatric effects
- AHCC and medicinal mushrooms (reishi, shiitake, maitake)“Lions mane increased my neuro symptoms” In context ↗ Made symptoms worse
- Nattokinase“I attempted Nattokinase to try and break things up if any but it gave me very bad tachycardia” In context ↗ Heart rhythm problems
- Nattokinase“Nattokinase (natto is different) made me feel terrible.” In context ↗ Made symptoms worse
- Lumbrokinase“I tried lumbrokinase instead and it gave me horrible pain” In context ↗ Side effects
- IV vitamins and Myers cocktail“a vitamin c drip made me feel like I was going to pass out and die” In context ↗ Low blood pressure or fainting
- Lamotrigine (Lamictal)“I was also on Lamictal for years but it gave me SVT.” In context ↗ Heart rhythm problems
- Excedrin (acetaminophen, aspirin, caffeine)“I can feel amazing after a dose of Excedrin for about an hour but then crash horrifically presumably from the caffeine.” In context ↗ Made symptoms worse
- Magnesium“I know glycinate is more tolerable but At 200mg I’m already heading to the toilet.” In context ↗ Gut side effects
- “I attempted exposure therapy to help my photophobia and it made it much worse.” In context ↗ Made symptoms worse
- Propranolol (Inderal)“Propranolol made me extremely short of breath to where I was almost passing out.” In context ↗ Low blood pressure or fainting
- Metoprolol (Lopressor, Toprol)“I’ve already tried metoprolol. I might switch back but it did make me pretty dizzy.” In context ↗ Low blood pressure or fainting
- Montelukast / Singulair“Then I stopped dead in my tracks, went and grabbed a knife and locked myself in the bathroom.” In context ↗ Mood or psychiatric effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“A few weeks ago it started making me feel terrible.” In context ↗ Made symptoms worse
- Carnivore diet“Anyway, I got a retinal bleed from the carnivore diet so I won’t be doing that again.” In context ↗ Other
- NAC (N-acetylcysteine)“NAC made it feel like my face was melting off” In context ↗ Side effects
- Whey protein“Whey *annihilates* my GI tract so bad it’s almost necessary to go to the hospital for me.” In context ↗ Gut side effects
- Metformin“Metformin made me shit my brains out and tanked my blood sugar which made everything worse.” In context ↗ Gut side effects
- Intermittent fasting“The couple times I tried to fast my blood sugar dropped into the 30s.” In context ↗ Other
- Melatonin“it left me with no coordination, no balance, I fell in the shower, and couldn’t even think straight” In context ↗ Side effects
- Fexofenadine (Allegra)“Allegra made me off balance and I fell a few times.” In context ↗ Side effects
- Ashwagandha“Makes me feel awful. Like the opposite of a Xanax” In context ↗ Side effects
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“I was an idiot and spent $600 on DNRS training out of desperation and after 7 months I had just gotten worse.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“Lexapro made me barf and killed my libido.” In context ↗ Gut side effects
- Venlafaxine (Effexor)“the Effexor made me aggressive” In context ↗ Mood or psychiatric effects
- Sertraline (Zoloft)“I’m sweating like you wouldn’t believe. Like changing clothes 2-3 times a day, it’s disgusting.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Exercise is absolutely detrimental to me, as is heat, sunlight, sex, alcohol, bread
In context ↗ - Brain fog
intense brain fog, heat intolerance, tachycardia, and all the other POTS symptoms
In context ↗ - POTS & dysautonomia
now I have POTS and dysautonomia
In context ↗ - Pain & fibromyalgia
I’ve developed horrific joint pain
In context ↗ - Headaches & migraine
Initially I was just dealing with migraines and dizziness everyday for a month
In context ↗ - Gut problems
among the POTS/MECFS and GI problems
In context ↗ - Light & noise sensitivity
I attempted exposure therapy to help my photophobia and it made it much worse
In context ↗ - Breathlessness
I have severe SOB as well but nothing I’ve tried worked
In context ↗ - Heart symptoms & palpitations
130s. Sometimes 160s if I’m already feeling terrible.
In context ↗ - Anxiety & low mood
have wanted to unalive myself several times
In context ↗ - Temperature regulation
I couldn’t regulate my body temp and was sweating uncontrollably
In context ↗ - Vision problems
I have vestibular disruption, vision issues, and lung nodules
In context ↗ - Hair loss
Now it’s thin and I’ve lost almost all of my bangs
In context ↗
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