frontal lobe epilepsy VS psychogenic seizures ....

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jayde-101

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I just wondering what peoples view is on this has anyone experienced a misdiagnosis of these two ? ... My neurologist has never really listened to me and has said that because my EEG's have been clear there is no way on earth it can be epilepsy....he has said that it is psychogenic non-epileptic seizures (pnes) ... My only thought is ive never heard of PNES being just at night ? My seizures are always in the early hours between (2am-4am) of sleep i am sometimes concious through mild ones but when i have bad ones i end up with a severly bitten tongue and i am some times incontinent ... and i always have to slerp afterwards cause of the exhaustion ... im just wondering if these sound like pnes or does anyone think ive been misdiagnosed many thanks xxx
 
This is a topic I am very passionate about.
Frontal lobe epilepsy is one of the epilepsies most often misdiagnosed as conversion disorder or psychogenic non-epileptic seizures. The frontal lobe is not very well mapped or understood yet exactly what it does besides having alot to do with motor control.
My journey has been a four year one to come to finally being placed on Keppra as my seizures evolved and worsened, but at the same time became more recognizable as simple partials. I have 2 small lesions in my frontal lobe that have been classified as normal by some neurologists but as abnormal by others.
Have you had an ambulatory EEG? Or a MRI or CT? Or a video monitored EEG? Did you have an episode during the EEG?
Have you had a second opinion?
My fifth neurologist was one specializing in epilepsy and the only one who made me feel that I wasn't just stressed out.
Usually PNES does not involve incontinence, although it can. Nor do they usually involve self injury, although they can. I have read that PNES tongue injuries usually involve the tip of the tongue and epileptic seizures usually involve the side.
It is such a difficult diagnosis to shake because PNES can be so difficult to distinguish from epileptic seizures. Even the exhaustion afterwards can be typical of both. Have you had someone witness your night seizures that could come in with you to the neurologist?
If in your heart of hearts believe that your seizures are not psychogenic it is worth getting even more than one second opinion.
Listen to what your body is telling you and your heart.
Either way you are experiencing seizures that you cannot control.
I know the struggle you must be feeling...are they right? You can begin to doubt yourself and start to feel like a hypochondriac. Hang in there. Find a neurologist who can look at your case with fresh eyes and no preconceived notions who will listen to you.
Easier said than done, I know.
 
Ive had a normal eeg , sleep deprieved eeg and a 3 day amblutory eeg they were all normal but i didnt have an episode with the eeg on.... It does involve my whole tongue and the beds been covered in blood from that many times... i have taking my bf with me but not much more help .. the neurologist i saw was leaving on the say if my appointment it was his last day so i feel he didnt really listen anyway... ive had this since 16 (22now) and its slowly getting worse :(

i do jusy feel at my witts end there is only so long you can go on only having 2-3 hours sleep a night ....ive been put on all these anti depressants and a anti psychotic and ts made me feel worse and not helped one bit ... :( oh well thanks for the reply :) x
 
I know how you feel. i have had seizure like issues since i was 9 years old. i did at one point get a dx for epilepsy but have since been dxed with non epileptic seizures. I have also been put on anti depressants which do nothing for the seizures but they do help with my panic disorder . I think i have had almost every kind of seizure and have bit my toung , cheek, and lost control of my bladder. My seizures do not show up on the eegs either. Even though seizure meds helped me, I had no seizures while on it, I was taken off the meds because of a normal 3 day eeg. i'm sorry you are going through this and I hope you can get some help.
 
My neurologist has never really listened to me and has said that because my EEG's have been clear there is no way on earth it can be epilepsy.
Click to expand...

Negative EEGs do NOT rule out epilepsy. Certain kinds of epilepsy, especially frontal lobe epilepsy can be especially difficult to diagnose. You need to find a new, better neurologist.
 
Ive been asking to see a new neurologist and they have given me an appointment .... 25th june !!!!! I am reluctently forcing myself back to work tomorrow i cant stand being off laying around ... :(
 
June 25th must feel so far away. But maybe going back to work will be a nice distraction for you. I hope that you have been sleeping better and that work itself won't be an added stress in your life.
 
Are you keeping a seizure diary? This will help your neur. at your June 25th appt.
Wishing the best for you.
 
That was the same problem I was having back in 2006 when they were reading my eegs until I found a really good neurologist out here in San Diego through UCSD who was willing to work with and my seizures.

Don't give up i recenlty just went through Brain surgery this past Dec 8th 2011 still recovering I just past my 4 month mark on march 29th of no seizures even though im still on seizures meds. where as before i was having seizures 4-5 times a week day and night full gran mal. they were coming from the front right temporal lobe. Please add me as your friend. I wish you luck. when I found out that surgery was a possibility i fought long and hard for it since 2010 it was the best Christmas gift ever.
 
A neurologist told me my simple partial extra-temporal lobe tonic clonic seizures were psychogenic. Years later I was able to get help from an epileptologist who had left the hospital that the neurologist was at because he and other neurologists weren't recommending patients to her because she was a woman.

She taught me: YOU CAN NOT MANIFEST PSYCHOGENIC SEIZURES IN YOUR SLEEP. The neurologist who is treating you is stupid. Bolt out the door and get to a place like the epilepsy center at the Cleveland Clinic.
 
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LJ-Bain said:
...Usually PNES does not involve incontinence, although it can. Nor do they usually involve self injury, although they can...
Click to expand...

this had slipped my mind as I recall getting this info at some point
it makes me feel "better" (?) in a way about my seizures
I've had a few black eyes, head welts, fingernail scratches etc. as well as the muscle strains

frankly, thinking I might have PNES makes me feel a bit like a nutjob.

no offense to those with PNES
but then maybe I have it too, and my injuries only mean I'm that much more of a nutjob
 
I had a Video EEG and had seizures but nothing showed on EEG,so person who wrote report said not epilepsy.I was in hospital at the time as I was having a cluster of sz at the time was depressed and confused as some Drs would say it's non ep others would say frontal lobe ep.I spoke to my consultant and he said the EEG cannot be used on it's own to diagnose ep you have to have all the other info like symptoms.He did actually look at my veeg and sent me a letter confirming epilepsy. j.j.
 
hmm

j.j. said:
I had a Video EEG and had seizures but nothing showed on EEG,so person who wrote report said not epilepsy.I was in hospital at the time as I was having a cluster of sz at the time was depressed and confused as some Drs would say it's non ep others would say frontal lobe ep.I spoke to my consultant and he said the EEG cannot be used on it's own to diagnose ep you have to have all the other info like symptoms.He did actually look at my veeg and sent me a letter confirming epilepsy. j.j.
Click to expand...

I seem to be having a real hard time getting them to do a video eeg ... I've been in hospital quite a few times with seizures and had a really bad one in my friends car last night i think it was the cars lights that set it off ..the had to stop the car and everything :( not fun as i hadn't told him bout my seizures think i scared him half to death ... Im hoping my new neurologist is nice and i get sorted as i can't keep on like this i wake up the next day with seizures really sore muscles like I've ran 3 full marathons :( even my fingers ache !!!

J.j what symptoms do you get how do your seizures present themself ? Do you have nighttime ones ?

Thanks for reply jade
 
Yes I have night time ones.My symptoms are my eyes go up n right in my head,head turns to R,R arm bends to shoulder,R foot turns in. My speech is affected I have stammering and problems finding words. I don't loose consciousness and can't respond to people but I can hear and see fine.I have them day or night, tiredness is one of my triggers.I have left temporal lobe and frontal lobe epilepsy. j.j.
 
petero said:
this had slipped my mind as I recall getting this info at some point
it makes me feel "better" (?) in a way about my seizures
I've had a few black eyes, head welts, fingernail scratches etc. as well as the muscle strains

frankly, thinking I might have PNES makes me feel a bit like a nutjob.

no offense to those with PNES
but then maybe I have it too, and my injuries only mean I'm that much more of a nutjob
Click to expand...

I feel like a nutjob on most any level these days. :bigsmile:
 
gigi said:
I feel like a nutjob on most any level these days. :bigsmile:
Click to expand...

thanks jiggi
I guess I mean to say - I just haven't felt like myself at all * since a bad seizure period a year ago
*correction*
I am a much more evil-spirited person than I was...
"I" feel like "I" is gone.
 
nuts

Hey Pete:

I went status almost ten years ago - I am different, a nice way of putting brain damaged! Between that and long term side effects of my med.- whoa honey, oh and being a middle age female!
The drugs that were pumped into me to save my life and keep me in a coma were also part of my demons after I got home. Not sure what affected me the most, the seizing or the mass quantities of pharmaceuticals still in my system...and the doctors gave me lower doses of same drugs to calm me down - I was basically in withdrawal. NOW I know! Thank you internet and my hubby, I was not going insane (maybe a little!) it was the drugs.
I understand what you mean about being evil spirited. My personality will never be the same, as well as my body. I have stopped grieving for the loss of me, and just work on prevention of future seizures to the best of my ability. I have learned so much from this and other sites. If not for going status, I might not have learned so much about this condition that I stayed in denial about prior to.
 
Well Im getting no further along and its driving me up the wall Im having about 3/4 a night and getting no sleep cause of them bleh !!!!! Im soo tired and fed up with it but no drs listen to me up... i just get quoted "the eegs were clear you can't have epilepsy and have a clear eeg " argh !!!! Dunno where to turn to any more :(
Jade
 
jayde, have you considered setting up a video recording yourself at home to show the Dr's?
 
gigi said:
Hey Pete:

I went status almost ten years ago - I am different, a nice way of putting brain damaged! Between that and long term side effects of my med.- whoa honey, oh and being a middle age female!
The drugs that were pumped into me to save my life and keep me in a coma were also part of my demons after I got home. Not sure what affected me the most, the seizing or the mass quantities of pharmaceuticals still in my system...and the doctors gave me lower doses of same drugs to calm me down - I was basically in withdrawal. NOW I know! Thank you internet and my hubby, I was not going insane (maybe a little!) it was the drugs.
I understand what you mean about being evil spirited. My personality will never be the same, as well as my body. I have stopped grieving for the loss of me, and just work on prevention of future seizures to the best of my ability. I have learned so much from this and other sites. If not for going status, I might not have learned so much about this condition that I stayed in denial about prior to.
Click to expand...

yeah - for about three days after leaving the ER (where my levetiracetam was abruptly stopped and where I was also administered some morphine, and I'm really not sure what else) I literally had a Donnie Darko "rabbit" visiting me a couple times.
yeah I agree about the moving on with things
but it's a recurring 'thing' that just keeps popping up that now I'm not really sure if it's an aura/seizure thing or if it's a PTSD thing...
one day at a time huh
 
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