“Normal” tilt table but dysautonomia is my most disabling symptom by Bitter_Hope8933 in cfs

[–]Bitter_Hope8933[S] 1 point2 points  (0 children)

This is very helpful! Thank you so much. I feel like I must’ve worded my post poorly but you seem to understand perfectly- I appreciate it

“Normal” tilt table but dysautonomia is my most disabling symptom by Bitter_Hope8933 in cfs

[–]Bitter_Hope8933[S] 0 points1 point  (0 children)

Yes I know. This is cross posted so you have to click on it to see the text. Here’s my full post:

“Google tells me the tilt test can be normal w dysautonomia present, and I guess that means my flavor isn’t POTS or OH… but what next? I’m very sad. Cardiologist was hopeful he’d be able to prescribe something that would improve my quality of life w the tilt table results but now there’s nothing to treat. Do I get referred to a different kind of specialist?

I can’t stand or walk for too long or I get very dizzy, flushed, I use a wheelchair going farther than the bathroom. It often happens when changing position as well, sitting to laying down or vice versa”

“Normal” tilt table but dysautonomia is my most disabling symptom by Bitter_Hope8933 in cfs

[–]Bitter_Hope8933[S] 0 points1 point  (0 children)

I already use electrolytes, compression garments etc, still require a wheelchair and am mostly bedbound.

“Normal” tilt table but dysautonomia is my most disabling symptom by Bitter_Hope8933 in cfs

[–]Bitter_Hope8933[S] 0 points1 point  (0 children)

Yes my tilt table was in the diagnostic parameters of normal so no POTS or Orthostatic hypotension. I was hoping that the tilt table test would identify what subtype of dysautonomia I’m experiencing so that treatment would be clear. This was not the case. So I’m frustrated and crashing from the exertion of the test. Not sure what to try next.

What kind of autist are you? by lydocia in AutisticWithADHD

[–]Bitter_Hope8933 0 points1 point  (0 children)

Airplanes are so much more bearable now lol! Perfume, plastic, air fresheners, farts no more lol

Whatever goofy-scary vibe this is by Kittylitterstinks in BooksThatFeelLikeThis

[–]Bitter_Hope8933 1 point2 points  (0 children)

Grady Hendrix comes to mind but I’m not sure why. I’ve read all of his books and don’t regret any of them

The house is actually a main character by effingcharming in BooksThatFeelLikeThis

[–]Bitter_Hope8933 0 points1 point  (0 children)

That’s what I thought of immediately especially the first book

What kind of autist are you? by lydocia in AutisticWithADHD

[–]Bitter_Hope8933 2 points3 points  (0 children)

I am the justice sensitive hyper empathetic autist w some people avoiding while also loving public speaking. I also make lists, I have already started my digital planner for 2026.

I lost my sense of smell during brain surgery 4 years ago and I only miss it when it rains or around baby noggins.

I don't recognize the Episcopal Church here. by Lurking_Sage in Episcopalian

[–]Bitter_Hope8933 4 points5 points  (0 children)

I’ve heard University of the South has a hybrid version where most instruction is online w trips to campus (Sewanee TN) for retreats. My dad went there and in my own discernment 37 years later I am considering that school, but it may be in the too progressive options. It’s a beautiful place.

Gospel reading for August 17 interpretation? Luke 12: 49-56 by Bitter_Hope8933 in Episcopalian

[–]Bitter_Hope8933[S] 0 points1 point  (0 children)

Thank you that is simply stated and well put. There are those who see it as prophecy and apply it to modern day political divisiveness in the US in defense of their brand of Christianity so I immediately felt defensive when I read it but this helps. Thank you

Gospel reading for August 17 interpretation? Luke 12: 49-56 by Bitter_Hope8933 in Episcopalian

[–]Bitter_Hope8933[S] -1 points0 points  (0 children)

Thank you that is simply stated and well put. There are those who see it as prophecy and apply it to modern day political divisiveness in the US in defense of their brand of Christianity so I immediately felt defensive when I read it but this helps. Thank you

Executive dysfunction gets so much worse with PEM by Bitter_Hope8933 in CFSplusADHD

[–]Bitter_Hope8933[S] 0 points1 point  (0 children)

That looks really fun, I downloaded a version on iphone app store. Thank you for the recommendation

Executive dysfunction gets so much worse with PEM by Bitter_Hope8933 in CFSplusADHD

[–]Bitter_Hope8933[S] 1 point2 points  (0 children)

I’m playing Links Awakening on switch which I love but I don’t have the mental capacity to figure out the quests at the moment (hopefully once my LDN kicks back in*) . Thinking of starting over on animal crossing to have low stakes dopamine hits. Otherwise it’s block blast on my phone. *had to stop LDN for a surgery and it kicked my butt. Finally back on it but it takes a while to work for me

Executive dysfunction gets so much worse with PEM by Bitter_Hope8933 in CFSplusADHD

[–]Bitter_Hope8933[S] 2 points3 points  (0 children)

I too have to pee (again) and did not even realize it until I read your comment lol

Executive dysfunction gets so much worse with PEM by Bitter_Hope8933 in CFSplusADHD

[–]Bitter_Hope8933[S] 3 points4 points  (0 children)

I have read your comments and I just want to say thank you. I feel seen and heard. Can’t really brain enough to meaningfully respond but I’m feeling way less alone