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Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?

Posted by DrivenByME @drivenbyme, Nov 9, 2017

In January 2014, after a battery of tests, I was diagnosed with psychogenic non epileptic seizures (PNES.) Information was not as plentiful as the resources are now, yet what I did find offered no real hope of recovery. November 2017 I am 2 years seizure-free. I am hope to all who decide they ARE going to recover from PNES. I've made YouTube help guides for those searching (youtube.com/christinemauriello) I hope you find guidance you need, when you need it.
Please feel free to use this forum for anything related to PNES.
God bless

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Jake | @jakedduck1 | Mar 25 12:09am
In reply to @whs2026 "For 3+ years, I have been dealing with the following daily, numerous debilitating symptoms, which were..." + (show)
Profile picture for whs2026 @whs2026

For 3+ years, I have been dealing with the following daily, numerous debilitating symptoms, which were then diagnosed in 2/2025 (via an EMU) as Non-Epileptic Spells (NES) - Functional Neurological Disorder (FND):
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
6. Headaches
My spells occur out of nowhere all day and evening long, even during sleeping hours.
Does anyone know of a treatment program for NES?
Or has anyone had these symptoms and it was diagnosed as something else?
I also have Parkinson's.
I would greatly appreciate any help, information, guidance, etc.

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@whs2026
How long do these episodes last?
Jake

REPLY
2 replies
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whs2026 | @whs2026 | Mar 25 4:05pm
In reply to @jakedduck1 "@whs2026 How long do these episodes last? Jake" + (show)
Profile picture for Jake @jakedduck1

@whs2026
How long do these episodes last?
Jake

Jump to this post

@jakedduck1 My episodes last 20 minutes to three-four hours; the spells are constant, happening all day & evening long and come out of nowhere...can be sitting, and I get a spell. Also, after taking a shower, drying dishes or taking clothes out of the dryer, I get a spell. Sometimes before I sit down for a meal, I get a spell.Also, I get a spell during the sleeping hours. Basically, the spells are non-stop with short breaks in between.

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1 reply
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whs2026 | @whs2026 | Mar 25 4:13pm
In reply to @whs2026 "@jakedduck1 My episodes last 20 minutes to three-four hours; the spells are constant, happening all day..." + (show)
Profile picture for whs2026 @whs2026

@jakedduck1 My episodes last 20 minutes to three-four hours; the spells are constant, happening all day & evening long and come out of nowhere...can be sitting, and I get a spell. Also, after taking a shower, drying dishes or taking clothes out of the dryer, I get a spell. Sometimes before I sit down for a meal, I get a spell.Also, I get a spell during the sleeping hours. Basically, the spells are non-stop with short breaks in between.

Jump to this post

@whs2026 Meant to mention the symptoms of my "Spells":
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
6. Headaches

REPLY
Profile picture for whs2026
whs2026 | @whs2026 | Mar 25 4:17pm
In reply to @jakedduck1 "@whs2026 How long do these episodes last? Jake" + (show)
Profile picture for Jake @jakedduck1

@whs2026
How long do these episodes last?
Jake

Jump to this post

@jakedduck1 Additional information regarding my episodes/spells....
Meant to mention the symptoms of my "Spells":
1. Shortness-of-Breath, followed by
2. Total body weakness, followed by
3. Tightness in throat & face - difficult to speak, followed by
4. Chills
5. Pain in back between shoulder blades
6. Headaches

REPLY
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