Mestinon

Ah, I didn’t know you had stats other than the measurements by the docs.

No, I have not tried it.
 
That sounds similar indeed.
It kind of feels like I'm lacking air but I also can't inhale well, as if something were pushing on my ribcage, constricting me, stopping me from taking a deep breath. As if I were out of breath after having run a 10k but unable to properly inhale.
I've always attribute this to asthma, but seems like it was mainly caused by tachycardia/OI (and Mestinon should if anything worsen my COVID induced asthma).
 
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Another update to pyridostigmine: As of now I can confidently say it's "cured" my symptoms. I'm at 30 mg TID and my HR while standing has reduced from 120+ to 75-85 (55-65 supine), I feel much less fatigued, no chest tightness when standing, no lightheadedness, no nothing! Got a massive boost in quality of life. Very happy I decided to take it, hope it doesn't lose too much effect over time.

I guess the next steps down the line will be to slowly wean me off the other medications (midodrine, fludrocortisone, nebivolol) one by one in the following months and see if the symptomatic relief through pyridostigmine sticks or if it's a beneficial interaction between anything in this cocktail. Let's see what my cardiologist says.
 
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rapidboson said:
Another update to pyridostigmine: As of now I can confidently say it's "cured" my symptoms. I'm at 30 mg TID and my HR while standing has reduced from 120+ to 75-85 (55-65 supine), I feel much less fatigued, no chest tightness when standing, no lightheadedness, no nothing! Got a massive boost in quality of life. Very happy I decided to take it, hope it doesn't lose too much effect over time.

I guess the next steps down the line will be to slowly wean me off the other medications (midodrine, fludrocortisone, nebivolol) one by one in the following months and see if the symptomatic relief through pyridostigmine sticks or if it's a beneficial interaction between anything in this cocktail. Let's see what my cardiologist says.
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Do you have a PoTS diagnosis? Or dysautonomia / OI?
 
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rapidboson said:
Mixed POTS and OI. No "classical" dysautonomia symptoms such as GI issues or dry/watery eyes/mouth, according to my doc.
What exactly is up, is probably a mystery tbh.
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Did a beta-blocker help you? Propranolol 20 mg in the morning seems to help lower my HR but doesn't seem to do much else to help my OI (which isn't severe, but is still quite disabling during PEM). I may trial mestinon.
 
InitialConditions said:
Did a beta-blocker help you? Propranolol 20 mg in the morning seems to help lower my HR but doesn't seem to do much else to help my OI (which isn't severe, but is still quite disabling during PEM). I may trial mestinon.
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Neither beta blocker helped me much with the increase of HR when standing up. They might have lowered it from 140 to the 120s. They had more effect on my supine resting HR.
Propranolol (10 mg TID Q6H) helped me with this tired but wired feeling but it had a negative impact on my lung function, so I stopped it.

Nebivolol (2.5 mg qd) had no impact on the tired but wired feeling but improved lung function compared to my baseline.
 
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