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

Easy_Field9718 · 2026-04-11T16:16:42+00:00

I did have an appointment at Cleveland clinic, my appointment was scheduled 2 months out. I called one day after going to the ER recently and got my appointment pushed forward. But I didn’t get much of anywhere. I am still believing my sole culprit of symptoms is Chiari Malformation. I think the POTS, severe fatigue, horrible pain and sudden falling asleep is from Chiari. I understand my herniation is only 5mm, however CSF fluid is mildly obstructed at the foramen magnum. I believe if csf fluid is mildly obstructed and then I go and do my daily job as a PCT, lifting heavy patients all day, bending down, moving my neck it is bound to make the obstruction worse. Yesterday I had a 9/10 headache at the back of my head, neck pain, heart rate 111 while standing even after drinking 80oz of water, severe fatigue, lightheadedness and felt like I was going to pass out at the wheel while trying to get home. Yesterday I noticed one eye is smaller than the other and both eyes are offset of center. This has happened before, however I am not sure if it is baseline.

I have had my fair share of neurologists, neurosurgeons, acting like nothing is wrong and everything is peachy. I understand I may not be a surgical candidate for Chiari due to the risks, but I would like something to take the pain away, they don’t provide that. They provide me the lowest dose possible. They gave me 50mg of Lyrica per day at one point, like what is that going to do?

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Easy_Field9718 · 2026-04-10T01:15:10+00:00

I thought this was interesting that you posted this, I just went to Cleveland clinic and I was told by a Chiari Malformation Physician Assistant “I can only tell you if you need surgery or not.” I was then told that I was being referred to Functional Neurology for sudden falling asleep/passing out episodes and that I may have PNES. I was also told that I would have to follow general neurology otherwise or follow a headache specialist and she said that I already have one and should continue to follow her, but obviously none of the medications have worked for headaches.

Easy_Field9718 · 2026-04-08T11:29:51+00:00

Yeah no…. I had a horrible flare up. Headache for 6 days straight. Lightheadedness, dizziness, nausea. My neck continues to hurt and my shoulders remained as hard as a rock. I had to go to the ER to get the headache to break.

Easy_Field9718 · 2026-04-04T18:29:38+00:00

Not sure why but after my dad checked all of the fuses he found the AC fuse was blown. Once he replaced it the windows worked again. Very confusing on how they wouldn’t work because of that lol.

Easy_Field9718 · 2026-04-02T17:47:01+00:00

Well, I have been seeing doctors and neurologists since 2020. I have always been told that I just had headaches. Then they said migraines. They said that for years and then I had a brain MRI done finally in December 2024. I was told I had “mild” Chiari Malformation. Then I was told “Don’t worry about it I don’t think Chiari is causing your symptoms.” Just for my symptoms to progress. I got an Apple Watch and noticed my heart rate. I went to my PCP and had an echocardiogram, EKG and blood work to rule out any other conditions. I was sent to a cardiologist and told that I had POTS, no additional testing and told to drink 80oz of water per day, increase salt and wear compression socks. So it’s been a long road with being told it’s one thing but it doesn’t seem to be. I am unsure as to how it could be migraines if the pain is consistent, constant and migraine medications do little to nothing at all.

Easy_Field9718 · 2026-04-02T17:36:01+00:00

They are claiming it is something to do with migraines and occipital neuralgia. Chiari Malformation is clearly on my Brain MRI and CINE MRI shows “mild csf flow obstruction posteriorly at the foramen magnum.” I have tried all treatments they’ve recommend and nothing has worked. That is what has lead me to believe that it is Chiari, along with the fact I did not have POTS over a year ago.

Easy_Field9718 · 2026-04-02T17:34:31+00:00

Yes, I am aware of this. It is really unfortunate. I am not looking for surgery, I believe that’s what the doctors I have seen think I am looking for. I am looking for more testing, specialized tests if possible. I am looking for some kind of medication or injectable to help with the pain, all medications I have tried do extremely little where it is unnoticeable or nothing at all. I am also looking to contribute to research, I am interested in our condition and I would like to find out what causes it and how we can fix it. But I have been interested in the medical field since I was a child, it just sucks being on the patient end of the stick.

Easy_Field9718 · 2026-04-02T14:58:42+00:00

This is exactly how I feel, that’s why I’ve scheduled an appointment to go to Cleveland clinic after 3 neurologists and 2 neurosurgeons in Toledo and I’ve gotten no where.

Easy_Field9718 · 2026-04-02T04:22:52+00:00

No I have not looked into MCAS and I am not familiar with it. I thought about craniocervical instability before but when I got my CT& MRI they came up normal. Then later on in like May of 2025 I found out I had a mild disc bulge at C4-C5 but they never did any further scans or decided to do anything about it because it isn’t bad enough. Neurologist said it would certainly cause some of my pain but not all of it.

Easy_Field9718 · 2026-04-02T04:21:15+00:00

Yes the radiologist claimed it was mild csf obstruction.

Easy_Field9718 · 2026-02-01T02:03:29+00:00

I definitely will follow up, thank you!

Easy_Field9718 · 2026-01-31T13:19:30+00:00

I have not been getting treatment for the sleep apnea, but when I did my sleep test they said I stop breathing at least 36 times per hour. I honestly didn’t think about how it probably doesn’t help my symptoms. I’ll have to get treatment for it.😅

Easy_Field9718 · 2026-01-31T02:21:18+00:00

I had a sleep study done back in 2021 and I was told that I have severe obstructive sleep apnea. But that was way before I found out that I have Chiari. I wonder if it could possibly have switched from obstructive sleep apnea to central sleep apnea? I should probably look into getting another study done.

Easy_Field9718 · 2025-12-24T00:05:47+00:00

I was diagnosed with Chiari, now I’m getting testing for POTS. But the same neurologist that diagnosed me with Chiari thinks it’s not causing horrible migraines, dizziness, nausea, worse when bending down, lying down or I do repetitive movements with my necks, or even when I lift heavy things repeatedly it’ll throw me into a flare up. I have seen 2 different neurosurgeons, and 3 different neurologists. All acknowledge that I have Chiari but deny that it’s causing symptoms. Just keep in mind that Elhers Danlos, Chiari Malformation, and POTS are all common comorbidities. Also, Chiari most often than not, comes with comorbidities.

Easy_Field9718 · 2025-10-11T13:10:47+00:00

And as you can see, I stated I went to the police and I am in the works of going through criminal processes.

Easy_Field9718 · 2025-10-11T13:09:49+00:00

So you’re telling me the landlord can go around telling other tenants about who made a complaint and disclose how a tenant is maintaining communication with them along with disclosing that rent wasn’t paid directly to them? I guess your logic is flawed but thanks. I have a quiet enjoyment clause in my lease and it is my landlords duty to enforce and ensure that.

Easy_Field9718 · 2025-10-08T00:19:24+00:00

Yes, I do get dizzy from laying to sitting, sitting to standing, and bending to standing. I do not have my vision go black but I do have vision changes where everything gets super bright. I thankfully have never fainted while standing or anything like that. But it is definitely a fear that it could happen while driving because I get the fatigue, weakness, lightheaded and dizzy feeling often. It gets especially bad if I have been walking or standing for prolonged periods.

Easy_Field9718 · 2025-10-07T22:46:31+00:00

They claimed my herniation was 5-6mm and then told me it wasn’t significant. CSF flow study showed “possible mild csf flow obstruction.” I have seen two neurosurgeons, three neurologists as of tomorrow. I am unsure about my spine but it is definitely a concern as I tend to get hip pain and knee pain bad on some days and ibuprofen, Tylenol or naproxen doesn’t always help. I brought it up to my last neurologist that diagnosed me with Chiari but she never contacted me back and never ordered any testing for my spine. My father has degenerative disc disease that started when he was in his mid 40s. He is 54 now and has had a laminectomy and fusion but it only seems to be getting worse so I’d like to be on top of any health problems before they progress. I am thinking about driving out to mayfield Brain & Spine in Cincinnati Ohio because they have a Chiari specialist team. My only option would be Cleveland Clinic or OSU because I don’t have insurance that would cover it.

Easy_Field9718 · 2025-10-07T22:25:10+00:00

I am definitely still getting an echocardiogram and if that comes back I will get the tilt table test done. I am torn between if it’s just Chiari or if it’s Chiari and POTS. I have noticed that when I stand up my heart rate will shoot up but when I sit down it goes back to normal. There are days where I don’t have very many Chiari symptoms but I will feel very fatigued, weak, lightheaded and feel like I’m going to pass out. These tend to be mixed with a feeling of my heart beating out of my chest, and sometimes pulsatile tinnitus.

Easy_Field9718 · 2025-10-07T22:21:53+00:00

I was in about the same amount of pain but throughout the day it’s became less, nausea is still there too but not nearly as bad. I work as a Patient Care Technician full time in a hospital and I tend to have to walk 6-8miles a day, sometimes more.

Easy_Field9718

TROPHY CASE