1. < Epilepsy & Seizures
Profile picture for DrivenByME

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

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for ellierwin
ellierwin | @ellierwin | May 22 11:49am

I just had a VEEG done this week. I’m home now. Got discharged yesterday and I learned that I have functional seziures and may have epilepsy also.

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Profile picture for peterkanyuk
peterkanyuk | @peterkanyuk | Jun 4 3:12pm

Your poor husband!!!! ...... I feel for him!
After experiencing an incident where I couldn't speak for a minute or two, they diagnosed me with a seizure or stroke. They put me on 2000 mg of Keppra and two months later decided I didn't have a seizure or a stroke but they did release a lot of blood which was pushing my brain to the right. It was caused by excessive Plavix Prescribed by the Doctor who put in my watchmen heart screen.
Trying to get off Keppra now Is extremely difficult. I have A very gentle taper but it still feels like I'm coming off something like heroin. i'm down to 250mg for a nine day period and each session feels like a Cannonball has been added taxing my weight and strength. Strangely my wife says I look like I have more energy .....Does anybody have any experience with similar and can anybody assure me that it will go away and how long? Thanks, Pete

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Profile picture for Jake
Jake | @jakedduck1 | Jun 4 9:07pm

@peterkanyuk
It's sounds like your taper is too quick and causing withdraw symptoms.. I’d slow it down considerably.
Take care,
Jake

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Profile picture for micheljmarion198
micheljmarion198 | @micheljmarion198 | Jun 20 5:40am
In reply to @hosey70 "My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed..." + (show)
Profile picture for hosey70 @hosey70

My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed on his brain. 2014 they said it was real seizures but after many many test doctors many things they say they are not real seizures. i dont know what to tell ER when i have to take him. he cant work because he is off balance and gets confused easily. So i know as a man father and always worked 2 to 3 jobs at a time. now cant work i know it bothers him. he sees a counselor and a psychologist but he still has them. the doctor at ER 2 Nights agosaid for me not to bring him to er unless he is hurt to just let him have these attacks seizures whatever at the house. sometimes they will go on for 30 min stop and then start back. i am afraid it will hard him doing it so long. the doctors at hospital say they cant do anything i just wish someone could help his reg doctor would like us to go to mayo see if they can help. We are afraid if we go to mayo they are gonna tell us the same and send us home with same as all do here. we live about 5 hours away so i dont know what to do its an awful thing we feel helpless

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@hosey70 What helped me the most was an MRI of the brain. They discovered a growth in the center of my brain they thought was the focus of my epilepsy. After removing it, my epilepsy seemed to disappear. No more seizure activity since. I was having grand mal seizures often before the surgery. Consider getting an MRI of the brain done.

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Profile picture for micheljmarion198
micheljmarion198 | @micheljmarion198 | Jun 20 6:49am
In reply to @jakedduck1 "@meagan I have never had a PNES episode, at least not that I know of. You..." + (show)
Profile picture for Jake @jakedduck1

@meagan
I have never had a PNES episode, at least not that I know of.
You mentioned the Keppra helped you. By that I assume you mean, they have decreased the number of seizures.
Anti-seizure medication has no effect on PNES episodes.
There are some differences between a seizure caused by epilepsy, and when caused by PNES. One difference is that virtually all epilepsy patients have their eyes open during a seizure while during PNES episodes the eyes are generally closed. Another difference is that seizures caused by epilepsy are normally always shorter than those caused by PNES.
Also episodes of PNES movements seem to be different from episodes where as epilepsy seizures are of a more consistent nature. There are other differences that I can't remember.
Has anyone witnessed one of your attacks?
Have you had these seizures/episodes since being on Keppra?
Do you have anxiety, depression or panic attacks?
Take care,
Jake

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@jakedduck1 I did have responses to my grand mal seizures by people who earlier witnessed them. I would often drop to the floor and shake, rattle & get stiff afterwards. I'd often bite my tongue or lip or cheek as well. My girlfriend saw me fall out of bed one time, as I started to shake uncontrollably. She turned me over to my side so I wouldn't swallow my tongue. She knew what she was doing to help me. I later had one grand mal at work, even though I was on the most medication I could take at the time. I just dropped to the floor and rattled & rolled & shook like crazy. My foreman was livid. He insisted i see my Dr. real soon. He was afraid I'd hurt myself on the machinery. My dr. planned an MRI soon after. he discovered a tumor in my right temporal lobe & a growth in the center of my brain. Both were removed a month later. I happen to be on a precautionary drug (Valproic Acid.) I'm as happy as a lark w\my life now! No more symptoms since.

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emaputric | @emaputric | Jun 21 6:43am
In reply to @whs2026 "@whs2026 Meant to mention the symptoms of my "Spells": 1. Shortness-of-Breath, followed by 2. Total body..." + (show)
Profile picture for whs2026 @whs2026

@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

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@whs2026 Hi! I am reading this and Im fascinated because I was diagnosed with epilepsy 3 years ago, but started presenting unusual symptoms one year ago( exactly the ones that you have described) but i have been told multiple times it is just panic attacks… reading this is making me question a lot of statements coming from my doctors. How did you end up treating it and how long did it take for it to be fully gone, if you dont mind sharing details🥹

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Profile picture for katcollins
katcollins | @katcollins | Jun 21 11:47am
In reply to @ellierwin "I just had a VEEG done this week. I’m home now. Got discharged yesterday and I..." + (show)
Profile picture for ellierwin @ellierwin

I just had a VEEG done this week. I’m home now. Got discharged yesterday and I learned that I have functional seziures and may have epilepsy also.

Jump to this post

@ellierwin I’m curious who diagnosed this for you. I have been diagnosed with these as well. In my first hospital stay, upon having a VEEG, I was told they were pseudo seizures. It took many doctors and specialty clinics to get the functional movement disorder diagnosis.

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Profile picture for ellierwin
ellierwin | @ellierwin | Jul 1 6:59am
In reply to @katcollins "@ellierwin I’m curious who diagnosed this for you. I have been diagnosed with these as well...." + (show)
Profile picture for katcollins @katcollins

@ellierwin I’m curious who diagnosed this for you. I have been diagnosed with these as well. In my first hospital stay, upon having a VEEG, I was told they were pseudo seizures. It took many doctors and specialty clinics to get the functional movement disorder diagnosis.

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@katcollins it was dr fruend at Mayo Clinic. He explained like how my brain has a software issue and not a hard ware issue

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Profile picture for gregd1956
gregd1956 | @gregd1956 | Jul 2 7:07pm
In reply to @hosey70 "My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed..." + (show)
Profile picture for hosey70 @hosey70

My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed on his brain. 2014 they said it was real seizures but after many many test doctors many things they say they are not real seizures. i dont know what to tell ER when i have to take him. he cant work because he is off balance and gets confused easily. So i know as a man father and always worked 2 to 3 jobs at a time. now cant work i know it bothers him. he sees a counselor and a psychologist but he still has them. the doctor at ER 2 Nights agosaid for me not to bring him to er unless he is hurt to just let him have these attacks seizures whatever at the house. sometimes they will go on for 30 min stop and then start back. i am afraid it will hard him doing it so long. the doctors at hospital say they cant do anything i just wish someone could help his reg doctor would like us to go to mayo see if they can help. We are afraid if we go to mayo they are gonna tell us the same and send us home with same as all do here. we live about 5 hours away so i dont know what to do its an awful thing we feel helpless

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@hosey70
Wow!

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Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Jul 6 2:01pm
In reply to @ellierwin "@katcollins it was dr fruend at Mayo Clinic. He explained like how my brain has a..." + (show)
Profile picture for ellierwin @ellierwin

@katcollins it was dr fruend at Mayo Clinic. He explained like how my brain has a software issue and not a hard ware issue

Jump to this post

@ellierwin
That's such a clear way to explain the difference between epileptic seizures and PNES (Psychogenic Non-Epileptic Seizures).
Thank you!
Chris

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