GC @ThePOTSPostman
Just a mailman with #POTS. Here to spread awareness and advocate for those with #dysautonomia #chronicillness Joined September 2023-
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Never feel bad for prioritizing rest. Your health comes first always.
One of the few things I remember learning in science when I was in elementary school is that the mitochondria is the power house of the cell. I never realized how important it was. Now sadly so many are seeing what can happen when that little cell becomes so dysfunctional.
If you want to try to put yourself in the shoes of someone with chronic illness, Try to remember a time you were really sick, maybe with the flu. Remember how awful you? Now imagine that feeling 24/7 and you never know when it will get better.
POTS is very real and an invisible illness, meaning there are many things you cannot see. You can’t see the tachycardia. You can’t see the brain fog and dizziness from the lack of blood to our head. You can’t see the vision dysfunction. You can’t see the dizziness. You can’t…
What is one of your worst symptoms that you deal with, and what have you found that helps you manage it?
Question for everybody Do seasonal allergies affect your chronic illness?
Do you ever find yourself struggle to catch your breath, taking a deep breath or taking a bunch of breaths between words when talking? That’s known as air hunger. Here's a good reason from Dr. Scheldon Kress on why some patients with Dysautonomia suffer with this. "Both…
The unpredictable nature of chronic illness is tough. Going days, sometimes even full weeks where you feel decent, almost as if you’re fully recovered again. And then getting hit randomly where all your symptoms come rushing back all at once. It’s a roller coaster ride.
I'm not in a bad mood. I'm sick and not getting better. This is the reason for my constant frustration.
I still don’t understand how some some people think they know my body better than I do.
21% of POTS patients see 10 or more doctors before being diagnosed with POTS. I hope this illness gets more recognition and belief in the years to come
What’s going on in the medical field? Why does it take so long now to see a specialist? First available appt for a specialist in Dysautonomia wasn’t until 2025! Thank God they had a cancelation and I’m able to get in but damn. Is the system overloaded or not enough docs?
Question for everyone, Can you have an autoimmune disorder with a negative ANA ?
When someone with chronic illness tells you they are fatigued please understand that it is different from ordinary tiredness. Our fatigue means we are drained, physically, mentally, and emotionally to our core . We have nothing left in us . Trying to function with fatigue…
In what ways do you think the SSDI system should change in order to better serve the disabled community?
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@ellecalendula @ThePOTSPostman @NHSGrampian Even then...maybe running away from lion My bestie shows me her HR at the gym, 130 or so...me standing up, 180 😂😂🫠
Let’s change the narrative together ! We close the old and dusty book. We leave it there where it belongs to ! The past !
@ThePOTSPostman We will change the narrative of #POTS from invisible to visible. The biomarkers are hiding in plain sight. Our mission: discovery science. @POTSActivist @dbkell @BinitaKane
@resiapretorius @ThePOTSPostman @POTSActivist @dbkell @BinitaKane 🙏 Thank you!
@resiapretorius @ThePOTSPostman @POTSActivist @dbkell @BinitaKane Did you hear the cheers all the way from Australia?! 🏆 💛
@resiapretorius @PeeNee2 @ThePOTSPostman @POTSActivist @dbkell @BinitaKane We’re working on this too 💪
@ThePOTSPostman We will change the narrative of #POTS from invisible to visible. The biomarkers are hiding in plain sight. Our mission: discovery science. @POTSActivist @dbkell @BinitaKane
POTS is very real and an invisible illness, meaning there are many things you cannot see. You can’t see the tachycardia. You can’t see the brain fog and dizziness from the lack of blood to our head. You can’t see the vision dysfunction. You can’t see the dizziness. You can’t…
@ThePOTSPostman @TrAumaGedd0n Yep, PVCs/PACs. I have them both from anxiety. They are mostly harmless, or as my cardiologist put it "bothersome, but not worrisome." Beta blockers have helped. Also, no caffeine, no alcohol, a diet change, starting hydrated, and keeping stress low help too.
@KeyDecision1 @ThePOTSPostman Oof! Hot showers are kryptonite for POTSies!
@ThePOTSPostman @ydrance @RedIsND Deep diaphragmatic breathing is a really good strategy in preventing and overcoming POTS symptoms. Regular diaphragmatic breathing had a real impact for me early on. But it was impossible to do during bouts of air hunger. I didn’t hyperventilate, either. It’s an awful symptom.
@ThePOTSPostman I don’t know if this is what my now adult daughter suffers from. At soccer if she was on too long or if she took a fall, she would completely panic and gasp for air, saying she wasn’t getting air and had chest pain (this was prior to Covid but worse after). Thought it was asthma
@chantal_clouts @ThePOTSPostman Either can be exercise induced; you can also have exercise induced anaphylaxis, often associated with MCAS. But asthma can be tested for and responds to ventolin; air hunger and anaphylaxis do not.
@ThePOTSPostman No, it’s just that I still have moments when I wonder if I’m just being dramatic & then someone posts something that reminds me I’m not & I’ve been dealing with this sh!+ for over 40 years. 😳🤦🏻♀️🥴
@ThePOTSPostman I’m really happy to hear you’re being seen. I hope it’s not too painful… sending you lots of compassion. Feel better soon.
@ThePOTSPostman I started taking advantage of the good days. They are rare, but when they come I just go with it and get done my big list of items instead of the normal everyday stuff. The weird part is usually on "good" days I'm nauseated and don't like to eat.
My pCO2 after 10min tilt was 16 mmHg. Normal is 36-40mmHg. Ironically, hyperventilation due to brain hypoperfusion leads to vasoconstriction of arterioles in the brain due to low pCO2 and even more brain hypoperfusion. One more vicious circle.
Do you ever find yourself struggle to catch your breath, taking a deep breath or taking a bunch of breaths between words when talking? That’s known as air hunger. Here's a good reason from Dr. Scheldon Kress on why some patients with Dysautonomia suffer with this. "Both…
@ThePOTSPostman That was literally 40 years ago. I only had one other hyperventilation episode that bad back in the mid 1990s where I landed in the ER because I couldn’t catch my breath. I also have COPD now. Forgive me; I seem to be a bit triggered right now.
Dr. Grubb and colleagues recently published this review of the literature on autoimmunity in #POTS and #OH. They highlight the mounting evidence that autoimmunity plays a role in both conditions. See more details in comments below. Read the article at mdpi.com/2075-4426/14/4…
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