I got my eds and pots officially diagnosed in 2011 before we started trying to get pregnant. I self diagnosed between 2007-2010.

New things I’ve figured out about POTS.

I realized 7/2024 that many of relationship conflicts were had standing in the kitchen. With my POTS, moving around doing chores and being upright is enough to get my heartrate up to 100. Then add conflict on top. Instant flooding/dysregulation.

Showering is difficult between POTS risk and ASD sensory/transition challenges.

• Treatments:
  • CHOP Protocol
  • swimming – Katie Ledecky – Olympic swimmer with POTS
  • Salt supplementation
  • Tilt bed frame up at the head if possible so you can strengthen your heart in your sleep
  • When standing keep your legs moving if you can (both knees slightly bent, shift hips like you’re belly dancing – your torso can stay still, or cross your legs and squeeze to press blood back up toward your brain.
  • Medication
• Pregnancy info: Pregnancy & EDS, pregnancy update 2
• Comorbidities
• Misdiagnosis: Fibromyalgia, Chronic Fatigue – is it POTS?
• POTS explains my temperature intolerances, fainting, dizziness, vertigo, fatigue, tunnel vision, chemical sensitivities, etc.
• Upset stomach can be a symptom of:
  • Anxiety
  • Hunger (I try eating, if it helps, it was hunger – I like dried apricots for this test)
  • Thirst
  • Gas
  • MCAS
  • POTS (sit down) – here’s why: Syncope can trigger your sympathetic nervous system (brain sends the signal to !panic! it isn’t getting blood to provide oxygen!!), and then when you recover – that can kick off the parasympathetic system (rest & digest – time to dump some digestive juices into your empty stomach!) which can then result in gas, bloating & nausea.
• Older post on POTS

Gas is one of the first symptoms of POTS I get. What I call Sparkle Fun Dots (usually upon standing, moving upright) is the next and more advanced. Tunnel or blacked out vision means grab something and lean or sit immediately. If it doesn’t clear quickly and you’re leaning, SIT! It’s better to sit in the grocery isle or shower than to pass out and hit your head.

Challenges you may share with me:

My autonomic nervous system doesn’t function properly (POTS), so my sympathetic nervous system has to compensate – I tense muscles to modify blood flow.

My tendons and ligaments don’t function properly, so my muscles have to compensate.

The constant muscle tension also activates the sympathetic nervous system.

So even without my cPTSD, I’m constantly existing with my sympathetic nervous activated.

My goal is reduced activation.

Laying down can allow me to activate the parasympathetic system, but too much time laying down leads to deconditioning, which aggravates the POTS, so it’s a self reinforcing loop.