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Has anyone gotten over CFS and intolerance to light and sound

Messages
2
My daughter, Natasha, has been bedridden for two years with long covid and CFS.
Has anyone been able to find a way to tolerate light and sound?
Has anyone found any cures for long covid problems or CFS Potts problems. If so please let her know of what helped you in this forum.
 

MaximilianKohler

Senior Member
Messages
111
Yes. I did with FMT from a good enough donor.

It's completely dependent on gut microbiome status, and my understanding is that it's largely due to intestinal permeability. If you don't want to jump into FMT you can try Cholesterymine first, which has also helped me.
 
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Blazer95

..and we built castles in the Sky.
Messages
269
Location
Germany
Lots of Long Covid patients have reported improvements with lactoferrin. you might want to look into that :)
 
Messages
71
Location
Scandinavia
Vitamin b6 fixed light and sound sensitivity for me after years of strugge. It might be worth a try.

You need to go low and slow since you can get too much (which will give neurological symptoms). 10 mg is a good starting point.

Adverse effects at low doses like heart palpitations could mean that it works, but that it makes magnesium tank, since vitamin b6 is needed to take up magnesium. That means that you will develop severe magnesium deficiency along the way when you are deficient in vitamin b6.

Best wishes for you to find a way out of it. Those sensitivities can really ruin your life all by themselves.
 
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Messages
53
I'm not sure POTS can be "cured", but for most people it can be controlled through prescription medications. If she hasn't already, your daughter should see a good neurologist with expertise in autoimmune diseases.

It took 5 years of experimenting with different combinations of drugs and doses, but my daughter's heart rate is, at least temporarily, under control. Unfortunately, it hasn't had an effect on her ME/CFS symptoms.
 

Blazer95

..and we built castles in the Sky.
Messages
269
Location
Germany
I'm not sure POTS can be "cured", but for most people it can be controlled through prescription medications. If she hasn't already, your daughter should see a good neurologist with expertise in autoimmune diseases.

It took 5 years of experimenting with different combinations of drugs and doses, but my daughter's heart rate is, at least temporarily, under control. Unfortunately, it hasn't had an effect on her ME/CFS symptoms.
See what you are trying to say, but wouldnt in theory a damaged endothelium or a dysregulated nerve system in theory be able to heal thus alliviating POTS?

I dont Recall it 100% but i think i heared some COVID Long haulers BE able to get rid of their Pots Like Symptoms when they have Hit Remission.

I dont want to give anybody false Hope and BE blindly optimistic but i tend to think its atleast theortically possible
 

Pearshaped

Senior Member
Messages
580
My daughter, Natasha, has been bedridden for two years with long covid and CFS.
Has anyone been able to find a way to tolerate light and sound?
Has anyone found any cures for long covid problems or CFS Potts problems. If so please let her know of what helped you in this forum.
Hi, regarding light and sound and other cognition stuff many of us find a bit help in meds like Lorazepam, (she should not use it more than twice a week if possible) or Gabapentin or similar.
I found also help in low dose Mirtazapine.
But benzodiazepines like lorazepam are very good to „calm the system down“ the problem is it can make you dependant, that is why she should not take it everyday.

I must say, my light sensitivity didnt get better until I as a whole was better.
living in darkness and chronic use of eye-sleepsmasks recommended, and a lot of patience.. it will not get better suddenly, it will take time.

Regarding POTS:
it depends what kind of POTS she has, but usually:
•increase water intake
•increase salt intake !

meds she could try :
Fludrocortisone
Low dose (!) Betablocker like Propranolol
 

bthompsonjr1993

Senior Member
Messages
176
My daughter, Natasha, has been bedridden for two years with long covid and CFS.
Has anyone been able to find a way to tolerate light and sound?
Has anyone found any cures for long covid problems or CFS Potts problems. If so please let her know of what helped you in this forum.
YES. Sound sensitivity is the only symptom of CFS that I have been able to fully cure. It was also my worst symptom in terms of how limiting it was on my ability to connect with other humans. It was so bad that the whirring of the air coming out of my vent in my room caused me agony. But I cured it. Fully. Here is how I did it:
https://forums.phoenixrising.me/threads/my-cure-for-sound-sensitivity.60645/
 

cfs since 1998

Senior Member
Messages
662
For me there is a direct relationship between my other symptoms and light/sound sensitivity. If I sleep really well and am having a "good day" they are less, if I sleep poorly or having a "bad day", it is really bad.
 

splusholia

Senior Member
Messages
243
Yes. Was very sensitive to both light and sound. Things that helped:

— probiotics / working on gut health
— minerals and Vit d
— B vitamins. Including higher dose b12 and b1.

Can now listen to music/sunbathe… never thought I’d be able to do those things again!
 
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