Bedbound long COVID, brain fog relief with ketotifen/loratadine, worse after chiropractor
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2024
In their words
- At worst: Severe
I’ve been bedbound for over a year now
In context ↗ - Now: Relapsed
Mine went back to normal when I almost recovered and then when I deteriorated again it went stiff and dry again ... I’ve been bedbound for over a year now
Read from 30 of their posts and comments; links to the 18 this page draws on
Summary
A UK medical researcher who fell ill with long COVID-type symptoms; joint issues came first and they were bedbound for over a year. Ketotifen with loratadine cleared about 70% of their brain fog and improved their sleep, their only win. A chiropractor's neck adjustment left them about ten times worse, and their cartilage kept degenerating; they remained largely bedbound.
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What they tried
What they credit
Also tried
Their words about each treatment
- collagen · Worse
I’ve tried them on and off and yes, I suspect they flare me.
In context ↗ - glucosamine chondroitin · Worse
I’ve only got it as part of my glucosamine chondroitin currently, which I don’t take anymore out of suspicion it flares me.
In context ↗ - ketotifen · Helped a lot
My sleep massively improved and my brain fog reduced by 70%.
In context ↗ - loratadine · Helped
I also took loratadine and a few natural mast cell stabilising foods.
In context ↗ - quercetin · Helped
Quercetin is one of the few things that definitely helps me.
In context ↗ - camomile tea · Helped
a few mast cell stabilising supplements such as quercetin, camomile tea, ginkgo bilboa
In context ↗ - LDN · Not said
My joints have only gotten worse since then unfortunately. So either it’s not doing a whole lot or maybe it’s even made it worse
In context ↗ - keto diet · No change
I’ve done keto and low histamine before. Didn’t really make a noticeable impact.
In context ↗ - physiotherapy · No change
I’ve tried physio, unfortunately it didn’t really do a lot.
In context ↗ - prolotherapy · No change
I’ve had three rounds of regular prolo and one round of PRP. No benefits and my CCI continued to get worse.
In context ↗ - microbiome work · No change
I did a lot of microbiome work in 2022 and I don’t think it made much difference.
In context ↗ - HBOT · Helped
The biggest difference in my gut issues came from hbot. ... The sibo went away three times from it.
In context ↗ - diaphragmatic breathing / guided meditation · Helped
I found activating the vagus via diaphragmatic breathing was really helpful, literally feel less ill within a minute.
In context ↗ - cold therapy · Helped
I find that some of my symtoms literally disappear when I do this.
In context ↗ - mestinon · Worse
I took one 60mg tablet and was stuck on the toilet a few hours later!
In context ↗ - chiropractor · Much worse
The chiro adjusted me but for some crazy reason decided to move my left side forward. Further crushing my vagus nerve and I got about 10x worse.
In context ↗ - intermittent fasting · Not said
Currently adding in fasting in addition to my usual intermittent fasting.
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | got a fair bit better by working on the nervous system’s compensation (breathing, meditation)I did this initially and got a fair bit better but some other things happened to me which made me worse (a long story).In context ↗ | Moderate | Meditation, yoga, breathwork |
| — | chiropractor moved their c1 forward, crushing the vagus nerve; about 10x worse and bedbound sinceThe chiro adjusted me but for some crazy reason decided to move my left side forward. Further crushing my vagus nerve and I got about 10x worse.In context ↗ | Severe | |
| 2024-09-08 | still deteriorated and largely bedbound; hair stiff and dry again after earlier improvementwhen I deteriorated again it went stiff and dry againIn context ↗ | Severe |
Adverse events
- Collagen, Glucosamine and chondroitin“I’ve tried them on and off and yes, I suspect they flare me.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I’ve been taking LDN for about 2 months and am on 2 mL (mg/ml) currently. My joints have only gotten worse since then unfortunately.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“Yeah you weren’t kidding about the stomach cramps lol. I took one 60mg tablet and was stuck on the toilet a few hours later!” In context ↗ Gut side effects
- Chiropractic“The chiro adjusted me but for some crazy reason decided to move my left side forward. Further crushing my vagus nerve and I got about 10x worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
the brainfog was 70% cleared by ketotifen and loratadine
In context ↗ - POTS & dysautonomia
It’s gotta be just another dysautonomia lack of homeostasis thing.
In context ↗ - Mast cell (MCAS) & allergies
I think I have it well controlled now (literally my only victory).
In context ↗ - Sleep problems
So I haven’t slept in weeks.
In context ↗ - Headaches & migraine
I get head pressure a lot now anyway
In context ↗ - Gut problems
sibo and oral overgrowth
In context ↗ - Breathlessness
I can’t breath enough automatically to sleep so I just slowly suffocate for three hours
In context ↗ - Heart symptoms & palpitations
palpitations, burning down my left side into my heart/back and left gut, tachycardia, ectopic beats
In context ↗ - Neuropathy & tingling
Yes I get the numb hands too.
In context ↗ - Anxiety & low mood
just feel like giving up
In context ↗ - Flu-like symptoms
It massively improved my sleep, flu-feeling and brain fog.
In context ↗ - Temperature regulation
I have to balance it with my lack of temp regulation though.
In context ↗
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