Long COVID with passing out, vomiting and migraines, now much better with ketotifen, LDN
- 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
long covid has been 10 times worse than anything I dealt with before
In context ↗ - At worst: Severe
when I was passing out regularly, having frightening migraines, and so exhausted I could barely think or walk
In context ↗ - Now: Much better
Six years later, I am maybe starting to feel mostly back to where I was, except that I have to work very hard to maintain that balance.
In context ↗ - Began after: COVID
After COVID in 2020, I'm now maybe three-quarters of the way toward recovery again.
Read from 22 of their posts and comments; links to the 12 this page draws on
Summary
Tulip 99250 had Lyme disease and MCAS before COVID in 2020 made everything worse; at the worst they were passing out, vomiting, with frightening migraines and too exhausted to think or walk. Ketotifen, LDN 4 mg and POTS measures helped, then Zepbound from February 2026 and CPAP for severe sleep apnoea. By June 2026 they felt roughly three-quarters recovered; by October 2026 they felt mostly back to where they were, still needing a rollator or wheelchair for longer distances.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- Amoxicillin · Not said
Amoxicillin was the easiest for me, when I had Lyme disease.
In context ↗ - oral antibiotics (names forgotten) · Worse
Some of the oral antibiotics whose names I have forgotten were murder on my GI tract.
In context ↗ - IV ceftriaxone · Not said
I took a month worth of IV ceftriaxone thru a PICC line and that didn't cause me problems.
In context ↗ - ketotifen · Helped a lot
Ketotifen is the one that made the most difference for me.
In context ↗ - LDN · Helped
I've been on 4 mg of LDN for five years and it has been very helpful along with protocols for management of POTS and MCAS
In context ↗ - atenolol · Helped
atenolol, electrolytes, hydration, and compression garments for POTS
In context ↗ - electrolytes, hydration, and compression garments · Helped
electrolytes, hydration, and compression garments for POTS
In context ↗ - CPAP · Helped a lot
This is when my life turned around and I started believing I could recover!
In context ↗ - Zepbound · Helped
I feel better in general, clearer minded, have more energy and in general feel more like my old self.
In context ↗ - cromolyn · No change
cromolyn wasn't helpful to me
In context ↗ - Magnesium glycinate · Helped
Magnesium glycinate helps me
In context ↗ - meditation, singing, humming and slow breathing · Helped
Singing or humming sometimes helps me too
In context ↗ - ice on the face, cold water · Helped
ice on my face, cold water
In context ↗
Approaches: GLP-1 drugs · POTS medication · Antihistamines & MCAS · Beta-blockers
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 first step with a time is 6 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| 2020 | COVID-19; mast cell symptoms worsened considerablyCOVID in 2020 significantly worsened my mast cell symptomsIn context ↗ | Not stated | |
| — | passing out regularly, vomiting, frightening migraines, barely able to think or walkI was passing out regularly, having frightening migraines, and so exhausted I could barely think or walk.In context ↗ | Severe | |
| about 2021 | started LDN, found very helpfulI've been on 4 mg of LDN for five years and it has been very helpful along with protocols for management of POTS and MCASIn context ↗ | Not stated | Low-dose naltrexone |
| February 2026 | started Zepbound; clearer mind, more energyI feel better in general, clearer minded, have more energy and in general feel more like my old self.In context ↗ | Mild | Tirzepatide (Mounjaro, Zepbound) |
| April 2026 | CPAP for severe sleep apnoea; no more migraines, some energyI feel so much better! No more migraines! I have some energy!In context ↗ | Mild | CPAP and sleep apnoea treatment |
| October 2026 | doing pretty well, roughly three-quarters recovered, still needs rollator or wheelchair for longer distancesSix years later, I am maybe starting to feel mostly back to where I was, except that I have to work very hard to maintain that balance.In context ↗ | Mild |
Adverse events
- Amoxicillin (Amoxil), Antibiotics (unspecified), Ceftriaxone (Rocephin)“Some of the oral antibiotics whose names I have forgotten were murder on my GI tract.” In context ↗ Gut side effects
- Low-dose naltrexone“LDN at 4 mg (my body said NO to 4.5 mg!)” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
The other thing that was going on was inadequately treated dysautonomia -- in my case hyperadrenergic POTS.
In context ↗ - Mast cell (MCAS) & allergies
I already had a MCAS diagnosis before covid, but long covid has been 10 times worse
In context ↗ - Headaches & migraine
I also have migraines with aura that I didn't even know were migraines as there was no headache.
In context ↗ - Pain & fibromyalgia
my various "afflictions" related to CFS (MCAS, POTS, neurocardiogenic syncope, fibromyalgia, and migraine) are in a "quiet" mode much of the time
In context ↗ - Brain fog
Long covid, MCAS, and the resulting brain fog forced me to change how I keep up with my field.
In context ↗ - Neuropathy & tingling
During Lyme disease many years ago, I had low B12, significant peripheral neuropathy, and could barely think straight.
In context ↗ - Gut problems
I was pretty deep in the hole at one point, with syncope, passing out, vomiting, migraines, and stretches of illness I barely remember.
In context ↗
Ask Miruvor AI
Similar stories
-
Not enough detail to draw a path
ME/CFS worsened to moderate after Pfizer; still moderate, amitriptyline helped sleep
Island 75834 had mild ME/CFS, working part-time and doing a PhD, until after a June 2021 Pfizer vaccination they worsened from mild to moderate and had to quit their part-time job. They also had worsened POTS and brain fog; amitriptyline helped their…
-
Mostly housebound with long COVID, helped by pacing, then worse after reinfection
Horizon 44452, a woman in Melbourne, fell ill with long COVID in 2022, developing pericarditis and severe PEM, with early POTS and possible MCAS/orthostatic intolerance. Mostly housebound for long stretches, she could walk or stand only 1–2 minutes and not…
-
Knocked flat with ME/CFS, now much better with supplements and LDN
Lagoon 80236 got long Covid in March 2020 and was knocked flat partway through a master's, resting for months before returning to grad school with a lighter schedule. A specialist's supplements cut their crashes, and LDN, an antiviral for EBV reactivation…
-
Long COVID fatigue and brain fog, somewhat better after LDN and metformin
After a COVID infection in 2022, Puffin 93772 was left with fatigue, brain fog, PEM and exercise intolerance that kept her working from home and resting most days. Paxlovid lifted symptoms for two weeks; she then slipped back down, though her baseline ended…