Learning to Live Horizontally - Your Guide to All Things POTS When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.

“Do NOT be afraid to rest. Your heart is effectively running a marathon any time you’re upright - it’s OK to be tired. Give yourself the permission u need to put your legs up & take a break.": buff.ly/pXIv5F2

by @Broadwaybabyto.bsky.social
#POTS #dysautonomia #ChronicIllness #spoonies #disabled

a cartoon girl is covering her ears with her hands and a star is spinning around her head . Alt: a cartoon girl is covering her ears with her hands and a star is spinning around her head .

Luckily, I'm used to feeling lightheaded 🙈🫠 don't know how I used to cope with this & have no idea how I used to drag myself to work like this

#LongCovid #POTS #TeamClots

Tica update - I'm still lightheaded but it isnt as bad as it has been over the last few days. Dr advised I stop & see if things settle. But as there is a little improvement today I'm going to keep going. If it gets severe again I'll stop/tweak meds.

#LongCovid #POTS #TeamClots

A handmade thank-you card on brown kraft paper sits on a wooden surface next to a small pack of iced biscuits wrapped in clear plastic. The card features a bouquet made from small colorful paper flowers (yellow, pink, purple, and white) with drawn stems and a silver ribbon bow. “Thank you” is handwritten at the bottom. The biscuits are round with white icing, thank you is written in the centre with a heart at the bottom and a small label on the clear packaging that reads “Handmade with love.”

After a pretty 💩 week this made my day today 🥹 A LC friend sent a thank you for helping with the covid inquiry, so sweet! It really is the little things that mean so much 🫶 I've met so many lovely people through this hellish experience!

#LongCovid #POTS #TeamClots

a man and a woman are sitting on a throne with a piece of paper that says ' tainted ' on it Alt: a man and a woman are sitting on two thrones, from the show Taskmaster. The woman points to the man laughing and says “that checks out!” Then doubles over in laughter and points to him again and says it again as he shrugs and nods.

For decades I intuitively felt 2026 would be a big year for me.

I hoped maybe I’d land a lit agent or experience the ever elusive “mom win.”

Instead, I get diagnosed with #POTS, am told I’ve had it since childhood, and find out I’m in a major flare.

Which [checks past luck]…

Auf den Tag genau vor 4 Jahren begannen die ersten Symptome meiner ersten COVID Infektion.

Zu einem späteren Zeitpunkt im April 2022 landete ich das erste mal im Krankenhaus und wurde dann bis heute dauerhaft krank geschrieben.

#MEcfs
#PoTS
und vieles mehr.

With everything in place, we begin the countdown. Joy is on its way. I will be doing a small stream today to practice even though I'm a 2. #POTS

finally got the new SBC, a NanoPi R6S, for my personal cloud home server, so like no blocker

the adrenaline from the excitement is about flooring me for now, gd #pots #hyperpots

at least it's one of the least stressful stressors for me, so it's more tingle than terror

It's still 80F in my house, had been for like. Idk two and a half days or something. I have had over 6 liters of fluids today. All heavily salted, ofc. #pots #dysautonomia #help

Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It) Self-care when you live with a complex disorder like EDS (especially if you have the usual add-ons like MCAS or POTS) is crucial&#…

Nope. Definitely not selfish.

#BlogPost #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #POTS #HolisticHealth #Acupuncture #TuiNa #SelfCare 💕 #Wellness

Don’t worry, I only have 7 appts scheduled for this week and another 7 next week 🫠

AND!! Only 6 phone call so far this week…not sure how many portal messages though 😥

At least I have my audiobooks and podcasts 🎧

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #EDS #POTS

Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Why not both?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #GutHealth #Mindful #Intuitive 💕 #Wellness

Will your doc recognize it’s from #Covid? Probably not. But you’ll get care. If you go in w/ #MECFS you’ll be shown the door. There is also so much comorbidity of ME w/ #POTS #MCAS #EDS etc that even if you have one of these & don’t have ME, learning about it could still help you to answers. 2/

I asked my consultsant colleague if he thought it would pass. And he said sometimes it does but what I'm experiencing sounds quite severe and more than a side effect.

I guess we shall see, why is everything so difficult 🤬

#LongCovid #POTS #TeamClots

🙄 never easy is it.
It’s hard because it took years to get my POTS symptoms under control & now I feel like I’m right back there again, constantly lightheaded/presyncopal. Hellish 🫠 but in a way luckily I'm used to it.

#LongCovid #POTS #TeamClots

I'm thinking maybe I need to reduce my POTS meds (or one of them) to try and get HR up and a bit spiky. I'm just too brady atm and I've been brady before & been fine but my body would compensate & this isnt happening on ticagrelor ?due to adenosine

#LongCovid #POTS #TeamClots

His main concern is he doesnt want me to faint whilst on triple which is also my concern. He told me to contact the prescriber and let them know which I have.

#LongCovid #POTS #TeamClots

I messaged one of my consultants who is an ex colleague & he agreed with my theory "Ticagrelor can sometimes have subtle effects on heart rate and autonomic tone, and in someone with POTS this can feel quite pronounced"

#LongCovid #POTS #TeamClots

If you looked at my HR data, you might think things look “better” but I actually need that increase in heart rate to keep me stable & upright.

#LongCovid #POTS #TeamClots

My theory is that for me, it seems to have lowered my HR too much (lots of brady) and blunted the compensatory responses that normally help me stay upright.

#LongCovid #POTS #TeamClots

So I know that ticagrelor can lower heart rate and also increase adenosine (a vasodilator). Thanks to the Visible app I was able come up with a theory after looking at yesterdays data & thinking wow this looks flat compared to my usual spiky HR.

#LongCovid #POTS #TeamClots

Another bad day, trying to stay conscious and not pass out even at rest just sitting in bed with feet up, thanks Ticagrelor 👌💔

#LongCovid #POTS #TeamClots

Test-retest reliability of clinical supine-to-stand tests in patients with postural orthostatic tachycardia syndrome: A cautionary tale Postural orthostatic tachycardia syndrome (POTS) is a debilitating form of orthostatic intolerance that predominantly (∼90%) affects young women, leading to diminished quality of life.1 Challenges ass...

Wichtig zu beachten: die Ergebnisse bei Stehtests können schwanken, so wie in dieser Studie auch bei vorher bestätigtem #POTS unter dem Cut-off liegen.

Relevant für Therapieentscheidungen...und Gutachten.

www.heartrhythmjournal.com/article/S154...

Metal injection logo On The Way UpHUNTER YOUNG of MOODRING: "When I Get That Low, I'm Like, ‘Oh F*ck, What If I Don't Come Out Of This?’ Because Some People Don't.” Hunter Young of moodring tells Metal Injection about the diagnosis that changed everything in his life, inspiring the project's brand new release out on March 27th. By Isabella AmbrosioPublishedFebruary 28, 2026

Hunter Young of alt metal band Moodring has ME/CFS, fibromyalgia and POTS

metalinjection.net/on-the-way-u...

Warning: contains the F-word

#MEcfs #Fibromyalgia #POTS

I haven’t tried that re foods because I have so many other food issues outside of #LondCovid & #POTS

But as to #BrainFog I try going through the alphabet to find my words. Might take a while but usually works in the long run 🤷‍♀️

Any other #POTs sufferers have problems with appetite? I hardly ever want to eat - anything - anymore

Fact check: true.
#Dysautonomia #POTS

Yup. #POTS

How Chinese Medicine Treats hEDS (Where to Begin) Acupuncture and other modalities of Chinese medicine can be an excellent resource for people with complex disorders, EDS and the c…

How does Chinese medicine treat EDS?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare #Strategies
💕 #Wellness

Obviously I dont want to faint, especially whilst on triple therapy. Has anyone taken this and know if this will pass after a few days/weeks?
Not looking for medical advice just want to know if this will pass 🙏

#LongCovid #POTS #TeamClots