her_cool_aunt

Like the stuff you like and let others do the same. Big 😘 to all the wonderful dramas that make me happy. 🔞 She/her. Master Cat’s Attendant

[her_cool_aunt @her_cool_aunt]

@lovecastpodcast #Restart is unhinged in a fever dream kind of way. Totally couldn’t stop laughing or my mind being blown.

[her_cool_aunt @her_cool_aunt]

@linds_longcovid I see. Thank you for explaining.

[her_cool_aunt @her_cool_aunt]

@julia_doubleday Suggests dysautonomia is a significant driver of fatigue and PEM in my case, since pyridostigmine is a PoTS medication that works by increasing parasympathetic activity in the autonomic nervous system.

[her_cool_aunt @her_cool_aunt]

@julia_doubleday Pyridostigmine (also known as mestinon) has made a massive difference for me. Taken me from mostly bed bound to mostly housebound. I’m very very far from well/normal still, but so so much better than I was. I have more energy, can do more and feel better in myself.

[her_cool_aunt @her_cool_aunt]

@AcsenseurSocial @chydorina It’s a much, much higher CFU count. I used to take the Seeking Health capsules but didn’t see any improvement/change.

[her_cool_aunt @her_cool_aunt]

@LongCovidKiwi @Naomi_D_Harvey It’s a very supportive community environment. I’ve found all the helpful medical professionals (LC doc, PoTS specialist, breathing physio, etc) and useful tips from fellow sufferers sharing info to help one another out. But it’s also a joyful place. https://t.co/kKcSEnOVfm

[her_cool_aunt @her_cool_aunt]

@LongCovidKiwi @Naomi_D_Harvey Maybe try Suzy Bolt’s RRR programme (a weekly schedule of many online sessions of breathwork, meditation, gentle movement and more). You can get 1 or 2 weeks free to try it out. Although it follows “calming the nervous system” principles, you are NEVER advised to push through.

[her_cool_aunt @her_cool_aunt]

@oriiionses For me, hormones are also at play with my MCAS (oestrogen and histamine get in an upwards spiral together) but that may not be relevant to your situation. I improved when I started taking progesterone (since my natural production had tanked), which calms everything down.

[her_cool_aunt @her_cool_aunt]

@oriiionses I use the free app Insight Timer (I highly recommend Ally Boothroyd - e.g. https://t.co/6i3a3ENt4S) and I also really like the First This podcast (literally just 10 mins https://t.co/bALAZKVPeo). I spend my days doing this kind of stuff in between distraction activities.

[her_cool_aunt @her_cool_aunt]

@whatnotsoforth @NeurologistMom I don’t *want* to have neuroinflammation - I’d much rather not! - but if the drugs and treatments that most help my PoTS (and also significantly improve fatigue and PEM) work by increasing parasympathetic activity then clearly the ANS is key for me. And that’s brain stuff.

[her_cool_aunt @her_cool_aunt]

@whatnotsoforth @NeurologistMom In my case, I believe PoTS is a significant driver of my fatigue and PEM. That (likely) being the case, the question arises - what mechanism makes my PoTS so bad? Could neuroinflammation be implicated at all here? I do have EDS and MCAS, so there’s a connective tissue element. 🤔

[her_cool_aunt @her_cool_aunt]

@DisabledDoctor @akkadtr1 @NeurologistMom At the time I assumed this was a PoTS thing - failed (repeated) signalling for vasoconstriction or something of that nature - but maybe my brain’s just flushing like mad every night!

[her_cool_aunt @her_cool_aunt]

@DisabledDoctor @akkadtr1 @NeurologistMom Hmmm. I’ve just remembered that I did a neurotransmitters urine test a year ago (first thing in the morning so I guess it would show up overnight activity being flushed out of the body) and my norepinephrine levels were off the charts high.

[her_cool_aunt @her_cool_aunt]

@akkadtr1 @DisabledDoctor @NeurologistMom I’d like to know about amitriptyline too. (Low dose - only 10mg - but still.)

[her_cool_aunt @her_cool_aunt]

@Jean__Fisch I know you look at UK and European data but from a statistical reporting perspective, I thought you might find this, ahem, interesting.

[Gregory Travis @greg_travis]

IMPORTANT

The US CDC has announced that, going forward, reported SARS-CoV-2 wastewater levels will be normalized to an endemic baseline

"Zero" on this baseline will be levels in the previous year

@EvanBlake17 @BenjaminMateus7 @arijitchakrav