anyone suffering from PNES
 

My 30 year old daughter has been suffering with seizures for almost 16 months. Firtst diagnosed as panic attacks then they got so bad we had all the clinical tests done and all were clear and now it looks like we could be heading back where we started. I would love to know if anyone suffers from or knows someone who suffers from PNES. If so what form of seizures do you/they get? How long do they last? Do they persist so it looks like the person is in a constant state of mental confusion? Would LOVE to hear from anyone.

Hello denissage1 and welcome to NeuroTalk. I didn't even know what PNE Syndrome was until I looked it up, and I see it's very rare and very painful. I'm so sorry to know that your daughter is suffering.

Unfortunately I'm unable to help you with your question, but maybe if you were to post in our Rare Disorders Forum, some-one there may have some information for you.

Here's the direct link: http://neurotalk.psychcentral.com/forum2.html

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Welcome dinissage1
 

It is so "conincidential" that you mention this. I am 34 and have been having seizures for over 2 years. I had a VEEG done at Duke Medical Center and was dx with PNES. The neuro and P.A. explained alot about it to me. It is brought on by anxiety, panic, depression, past abuses and traumas (subconsciencely).

I am learning to deal with this. Neuro(Bio)Feedback is the best way to help reverse PNES. I jus started my treatment and they are estimating approx. 1-almost a year and a half. The treatment is very eye opening and it lets you actually take more notice of yourself and your feelings.

If you need more info, please PM me and I can go into further detail. But please tell your daughter that there is definitely HOPE.

Best wishes to you and your daughter.

Missy

Hi and welcome to NeuroTalk! Looks like someone here has already posted that they can relate to your daughter's condition....that's wonderful. I'm sorry that either has the condition but hope they can somehow help each other. :)


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Hi, Denissage! :Wave-Hello: Welcome to NeuroTalk!

This sounds miserable and I am also clueless. :( We have a search engine located in the toolbar near the top of every page. You may be able to search specific symptoms to locate pertinent discussions. I hope you'll find our community supportive and helpful. :)

Anyone Suffering from PNES
 

Hi there. Im new here to NeuroTalk. I actually found this thread from a google alert I set up for PNES. First I want to say to the person below you who wrote "PNE Syndrome". The "S" stands for seizures. A good thing to look up also is Pseudoseizures. But to be politically they have changed it to PNES, because the word Pseudo gives the impression that they aren't real seizures. They are real seizures, they just arent EPILEPTIC seizures.

My seizures have never been classified as a panic attack. When I seize, I go into a full blown seizure. If it were a epileptic seizure, they call it Tonic Clonic seizures, which in Epileptic talk means Grand Mal. From what people have told me, my seizures start out with me just stiffening up and collapsing, then I start to shake severly. The only differents, THEY say, is that my life isnt threatened DIRECTLY by the seizures. Apparently with PNE seizures, you mind takes over when you body is going to far. It wont let you hold your breath till you pass out or stop breathing all together, or like me, I bite my tongue on the side quite a bit, but because its psychogenic, your mind takes over and wont let you inhale blood into your lungs. I've inhaled blood once, but they said as soon as i did, my body tried to expel it by coughing. Apparently I left quite a mess for the cleaning ladies this time to clean up when i was in the hospital.

My seizures looked so much like epileptic seizures, that I had about 7 or 8 EEG's to prove it wasnt. The last one was when they finally caught me in an active seizure, and yes, stress, pain, all the regular things showed up on the EEG, but no epileptic activity.

I think the shortest seizure I've had was about 5 minutes, and got up after it was over. My longest however was as long at 6 hours, in and out of several seizures over those hours, and then, as you say, I am either so tired I dont even know whats going on and they can barely wake me, or I have a long period of confusion. Sometimes the seizures are so bad, that i'm out of comission for a day and need indosin (indocin?) for a few days afterwards, because of the muscle strain that I go through when i have the seizures. It don't know what you're daughter's seizures are like, but it does sound like she has Conversion Disorder of some kind. My diagnosis is Conversion disorder, Sub of Somatoform Disorder & Sub of Post Traumatic Stress Disorder with Tonic/Clonic Psyogenic Non Epileptic Seizures and Absent Seizures. I also have other psychiatric disorders and have spent some time in hospital on a mental health ward (which isnt as bad as they make it out to be on tv).

For this, I am on a very structured sort of therapy called DBT (dialectical behavior therapy). Look it up, there's lots on it. At all about learning how to cope with the memories or thoughts, BEFORE they happen. I've been given 3 list of techniques (long list) I can use to distract myself when these memories or thoughs are creepin up on you, but the first part of the therapy is learning to reconize those times, and thats really the hardest part. I rarely reconize when I thinking bad thoughts or when bad memories are flooding my brain. You should really ask about DBT.

Good luck with your daughter. By the way, i'm almost 32. My seizures started when i was 30. There is so much synisisim and so little understanding about it all, that no one is really learning about it. Half dont believe that the subconscious mind can make the body do physical things like PNES. There's lots of ignorance when it come to this stuff. The best thing to do is to do research on your own. I've shown doctors and nurses things thay didnt know about it, the first being that its no longer called peudoseizures.

Anyways, i'll shutup. I'm going on too much!

:hug:Angela

i had that diagnosis too
 

my pnes diagnosis came with a 4 day epilepsy monitoring session. my symptoms were never that bad, but my brainwaves are abnormal, and indicative of someone who is hallucinating. most of the time i feel quite normal, but under stress i can get panic attacks and have short memory blackouts. reduce the stress, reduce the symptoms. i am not at all convinced the diagnosis is correct and suspect it has a lot more to do with my sleepwalking disorder. it is like i fall asleep and then start acting out some dream while a minute ago i was awake. since they don't believe that i sleepwalk their diagnosis is suspect. the interesting thing is that i had a sleepwalking episode while being monitored, and they did not believe me.

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Hi, and welcome to NeuroTalk!

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again
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