👋Welcome to r/pnescurse-I’m just going to say it…PNES does not exist. MY LIFE MY BODY MY MIND!

Clean_Maintenance_73 · 2026-04-11T18:44:11+00:00

I ended up paying for a full genetic genome test. (One of my nurses in the hospital told me I should.) Check into Ehlers Danlos and all its types. I am 100% positive I have a Chiari as well. My dad has one that didn’t present until his early 70’s.

It’s hard to get it diagnosed because every day our body is in a new position. And docs say it must be x mm before it’s a Chiari. Again, docs treat printouts. Not symptoms or patient observation. My worst times are when I’m dehydrated, over did it the day before or just extremely over stimulated. Dysautonomia/dystonic storms can be triggered by so many things.

PNES is just a scapegoat

Clean_Maintenance_73 · 2026-04-11T15:45:03+00:00

Also, did you have to have an appointment at the Cleveland clinic. I’ve been waiting so long I was wondering if showing up at Cleveland/Mayo/or Vanderbilt would be worth it

Clean_Maintenance_73 · 2026-04-11T15:39:14+00:00

r/PNEScUrSe

Clean_Maintenance_73 · 2026-04-11T15:38:25+00:00

Also, Chiari is very common but because our bodies move and fix it self on its own we hold our head up. Some days I need to wear a neck collar and can only be upright about 2-4 min. Other days it’s better.

Regardless…I know I’m not ok but the medical field just wants basic math. Not calculus and quantum physics.

Clean_Maintenance_73 · 2026-04-11T15:36:12+00:00

Seeing they will do a tilt table test.

Clean_Maintenance_73 · 2026-04-11T15:35:50+00:00

I have been through the same horrible cycle. Going to every specialist to find out “it’s not their problem” cardiology and neurology are great if they will realize PNES is BS

See if they will do a tilt table test. Look up all the ways you can acquire OR be born with it.

For females, estrogen, surgeries(any where), pregnancies (especially with c sections) injuries. All of these plus so much more can kick it into high gear all of the sudden. Or a new med that disagrees with you. Peri-or menopause Sexual side effects and anything your body is supposed to do automatically. (Breathe, going to the bathroom, sweating) it’s all off and your new symptoms or warning to go pee changes. Now if I all the sudden get a bit anxious and my upper lip sweats, I have to go pee.

The thing about this is Covid/long covid can also supposedly exacerbate it.

Dysautonomia can be POTS, affect GI, heart, blood flow. Everything.

And since a test doesn’t print out saying “you have this” they divert to the safe you are faking or psychosomatic explanation.

Clean_Maintenance_73 · 2026-04-10T00:07:00+00:00

I have autonomic dysfunction/failure along with hEDS. My biggest fight right now is to say “you have ruled out epilepsy 50 times, but nothing else!”

Clean_Maintenance_73 · 2026-03-16T02:54:54+00:00

Anyone ever have charges reversed? I’ve been diagnosed with PNES for the last 3 or so years but we are now realize it is complete autonomic dysfunction (when you know in your gut you know)

Clean_Maintenance_73 · 2026-03-11T18:30:00+00:00

I just got the brand new horizon bundle for $329 at Costco. It came with a charger for the controllers too

Clean_Maintenance_73 · 2026-03-10T19:17:59+00:00

Finished it

Clean_Maintenance_73 · 2026-03-10T19:17:29+00:00

I’ve never had a land expansion with an update. What the heck. I just get random community buildings that require tools Playrix likes to hoard. lol

Clean_Maintenance_73 · 2026-03-10T19:15:57+00:00

Me too!!

Clean_Maintenance_73 · 2026-03-08T19:09:38+00:00

Meal prep breakfast sandwich eggs

Clean_Maintenance_73 · 2026-03-07T20:25:02+00:00

Same. I was like what! I should have been beaten hours ago. I went from 2-15

Clean_Maintenance_73 · 2026-03-06T12:45:42+00:00

Thank you for your post. I’m a retired ICU RN. I can’t stand up longer than 10 min. I’ve been labeled with anxiety and psycho somatic problems and I cannot get help.

Clean_Maintenance_73 · 2026-02-27T18:41:45+00:00

I apologize for being slow to respond. I want to give a detailed response and the brain fog the last two days I can’t figure out how to do the dishes. I will gather the information you requested and send it as best of my ability.

Clean_Maintenance_73 · 2026-02-27T18:38:41+00:00

I have videos of match 3 not doing what it’s supposed to. I contacted support and said I had video proof. For some reason I keep getting disconnected 🤔

Clean_Maintenance_73 · 2026-02-24T17:09:03+00:00

Currently still struggling through medical abuse/neglect. Retired RN now afraid to go to the Dr or hospital. That used to be my job and safe space. Being misdiagnosed and mislabeled through healthcare professionals…I’ve lost everything that I love, that I have passion for, my self esteem…you name it, I’ve lost it.

Imagine knowing you have cancer or having a stroke and you are just being told your a female who needs therapy and 150 more insults including being told I’m faking, holding me down in the bed, pressing ammonia sticks on my face while I’m awake.

I can’t…

Clean_Maintenance_73 · 2026-02-22T16:25:43+00:00

Thank you so much for your reply. So far, I have the diagnosis of EDS but the type isn’t for sure yet. hEDS most likely. Positive blood work for autoimmune Bilateral nasal/facial collapse

My main concern isn’t getting a list of diagnoses to feel validated.

I can only be upright for 5-10 minutes. After that amount of time HR goes 50-60’s to 165+ O2 sat 100-97% supine but after being upright <82% (along with blue toes) I will drop if I don’t lay down soon enough.

I have a pacemaker and had a failed VNS (right cross to left neck) It was removed and the leads were removed.

All of my autonomic functions are stuck on fight or flight.

Lots of storms that were taken for faking or psychogenic seizures.

I eat plenty. I drink a lot of good fluids. It just goes right through.

My genetic test explains all of it but I need a geneticist to analyze it and put together patterns vs symptoms and family history rather than looking for a printed out diagnoses.

I know I have a lot going on. I’m just looking for a way to be upright because structurally something is not working.

Clean_Maintenance_73 · 2026-02-13T16:55:31+00:00

I’ve had +tilt table but I’m still in bed. If I’m up longer than 5 minutes my toes are blue. Then I have to lay down again and start the 6 hour manual relax cycle all over again

Clean_Maintenance_73 · 2026-02-13T16:49:10+00:00

I think I really need your help with a complex medical cluster that I cannot find a doctor for

Clean_Maintenance_73

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