To those with psychogenic seizures

[Maidenminx]

I was diagnosed with psychogenic seizures in July (the 20th, my birthday). Since then I have been on the annoying course of finding my self a new, decent, affordable, long term psychologist. I have been through the local free mental health system, I have a list of people to call and the free psychiatrist wants me to go back in 6 weeks. I have a history of chronic depression and other metal health issues, so I am used to the whole process of going through crap with a new counsellor, but this time it's scary.

From the article I was given when diagnosed, it would appear that psychogenic seizures are most common in females. Those with childhood trauma make up a high percentage of those women, and if there was sexual trauma as well the percentage went higher again. Then there was a whole bit about the general mental state of someone who develops psychogenic seizures, and it seems most common in people with mental health issues.

In my childhood, there was much trauma and some of it was sexual. I have been suicidal on and off since I was 8, (I'm not at the moment. I would never kill myself, I'm too curious about tomorrow.)When I'm off my antidepressants I am not a happy camper.

I was wondering if anyone can relate? I'm not asking anyone to go into details, but I'm wondering if any of this rings true with anyone else? Going into counselling this time around has me very anxious. I know there is stuff I don't want to go digging into, but obviously my brain is telling me it's time to do it. Which actually annoys me greatly because I have been working so hard on my positivity I thought I was on my way to mentally healthy, or as close to it as I can get.

 

[Nakamova]

I don't have personal experience with that kind of trauma, but I know some CWE members do, unfortunately. I hope you can find the right therapist to help you with your current journey.

You may find this thread helpful: http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/

 

[popcorn]

I have been going to therapy off and on for about 13 years now. I have been diagnosed with PTSD from childhood sexual abuse. These emotional things you talk about are very familiar to me.

I started having strong dejavu episodes with heat rising from my pelvis upward, intense fear, and vomitting. Then I sleep. I also have smaller dejavu episodes without the intensity around these stronger ones.

I am going for a sleep deprived EEG tomorrow and an MRI soon. I have a HUGE fear this is going to be called 'nonepileptic'.

 

[Maidenminx]

Popcorn, don't be scared of finding out the seizures are non epileptic. That is actually really good news because it means they can be overcome and you may not have to live out your whole life with seizures. Oh and if you ever have to go into hospital for your seizures, don't say non epileptic seizures, simply say seizure disorder. That way they don't treat you as if you are nuts.

 

[Chaz1]

my necie was very tramatized by many, many negative happenings in her youth, she tried hypnotherapy and it worked wonders for her....

what our cruel world has put you through, so sorry Maidenminx/Popcorn,

 

[pita300]

I'm currently stuck in the middle. Neurologist thinks my seizures are psychogenic and psychiatrist thinks they could be both. I had no major trauma in my life. I've been fighting depression for quite some time and am on medication to help. Finding a good neuro psychiatrist i believe is the key. I am male so that bucks the trend. I'm always around if I can help with questions.

 

[Maidenminx]

When I found the article I was given I am going to scan it and post it here. I can't find the whole thing online and it was the most informative and least derogatory (as in, it spoke of it as a very real disorder and didn't make it seem 'put on' like other articles do).
Pita, Neuro 1 thinks they're both, neuro 2 thinks they are just psychogenic, my GP thinks they are both too. My guiding psychiatrist (here to help until I find a permanent one) thinks it's irrelevant what type they are because 'pseudo seizures' (I hate that phrase and the way he says it)are definitely present and other seizures can't be treated with therapy. The only person in that list I actually really like is my GP.

This is now all topped off by the discovery of night seizures. I had a constant migraine yesterday, literally all day. Yesterday while I was sleeping my husband filmed a seizure. Then this morning I have woken up with my bottom lip wrecked. It stings.

 

[canarm1949]

According to a study I read, psychogenic seizures affect only 4% of the epileptic population and 75 % are female.
Everyone should see the youtube documentary called,

Making a killing; The untold story of psychotropic drugging.
this video tell you how psychiatrists are making up new conditions just to push drugs.

 

[KarenB]

Maidenminx -- since your husband caught that seizure on film, I would definitely have your neurologist take a look at it. Also, the interim psychologist.

I found it interesting that you're on 2 AEDs (Keppra & Lamictal) even though the seizures are supposedly non-epileptic. I'm curious as to whether they give you any relief from the seizures?

My personal opinion (based on absolutely no medical knowledge of the subject) is that most psychogenic seizures are probably real seizures, but because the EEG is normal, they are not diagnosed as epilepsy.

A normal EEG and a clear MRI are NOT proof that you don't have epilepsy. Our Jonathan has had severe epilepsy for 7 years (since age 1, mostly originating in right temporal lobe, but actually can start anywhere and go anywhere) and most of his EEGs are completely normal, and his most recent MRI was also squeaky clean (except for cavum septum pellucidum -- but lots of people have that with no neurological symptoms). It is only when he is attached to the EEG and actually has a seizure that the epileptic activity is noted on the EEG -- AND - not all of his seizure activity gets picked up on the EEG, even when he is clearly having one (his epileptologist has observed such tonic seizures on video EEG, and his neurologist has stood by his bedside while he was having one -- that lead directly into convulsions -- but the EEG didn't show any abnormality until the convulsions started -- really wierd). Recently -- he did have an abnormal EEG when not having a seizure, but he'd been having frequent seizures during that time period (several a day). But usually, if he's not having a seizure, or having an aura leading up to a seizure (and auras are supposed to be simple partial seizures) -- nothing shows up on the EEG. Seizures that originate from deep in the brain often don't get picked up by EEG.

 

[RobinN]

Maidenminx - about the only thing we have in common is our Birth Date.
My daughter was diagnosed at one time with PNES, but others in her medical world ruled it out. A troubling time for us, but I realized that the labels were not helpful in finding the causes, and methods to treat them. Raising her seizure threshold was my focus. For us it meant making nutritional changes. She also did neurofeedback, and she has been seizure free for over 18 months, and med free for more than 4 yrs.

 

[KarenB]

Robin, that's wonderful news -- I was wondering how your daughter was doing.

 

[MaeDae]

I can related to all that you have said, trauma has been a constant in my life. I was perfectally fine prior to having an aneurysm. Sure, I had issues with depression prior to having the annie, but I had a handle on it. You know what I mean? Something triggered all of this. I think the annie. I have not been diagnosed as having either seizures, anxiety or PTSD.

I am on a constant roller coaster, my hi's are few, and my lows seem to rule. I am considering returning to the psych dr. It's beginning to be to much for me. I'm having a hard time telling the difference between the physical crap and mental crap and the other mental crap and they're happening at the same time.

Been having constant headaches lately. Makes me nervous, reminds me of the events that happened just before I had an aneurysm. I pretty much think Im going crazy. I got meds, lamictal, keppra and Im absolutely affraid of them both. I have noticed that I have the physical episodes atleast 2'xs a day, around 2pm and again around 9pm (not every day but often enough) and I am depressed or happy as a lark in between. Up and down, like a switch being flipped. Dr's? None of them are helping me.....yet! They actually seem reluctant to me. Perhaps they think Im faking. Will never know, they just look at me and nod their heads.

Im going to start again with pysch, perhaps, just perhaps he'll take the ball and put in the basket!

I hope you find an answer, I hope you feel better and I pray that they listen and help you. Wishing you the best.

 

[Blue]

I can related as well. I am an abuse survivor as is my friend. He has epilepsy as well, I do not. Those emotions and feelings are all too familiar for both of us.

As for seizures, they can be a combination of both. And though he won't admit it, I have a very strong suspicion that the last bout of status my friend went through started with a psychogenic seizure, then carried on non psychogenic ones.

 

[Chelsea]

I was diagnosed with psychogenic seizures in July (the 20th, my birthday). Since then I have been on the annoying course of finding my self a new, decent, affordable, long term psychologist. I have been through the local free mental health system, I have a list of people to call and the free psychiatrist wants me to go back in 6 weeks. I have a history of chronic depression and other metal health issues, so I am used to the whole process of going through crap with a new counsellor, but this time it's scary.

From the article I was given when diagnosed, it would appear that psychogenic seizures are most common in females. Those with childhood trauma make up a high percentage of those women, and if there was sexual trauma as well the percentage went higher again. Then there was a whole bit about the general mental state of someone who develops psychogenic seizures, and it seems most common in people with mental health issues.

In my childhood, there was much trauma and some of it was sexual. I have been suicidal on and off since I was 8, (I'm not at the moment. I would never kill myself, I'm too curious about tomorrow.)When I'm off my antidepressants I am not a happy camper.

I was wondering if anyone can relate? I'm not asking anyone to go into details, but I'm wondering if any of this rings true with anyone else? Going into counselling this time around has me very anxious. I know there is stuff I don't want to go digging into, but obviously my brain is telling me it's time to do it. Which actually annoys me greatly because I have been working so hard on my positivity I thought I was on my way to mentally healthy, or as close to it as I can get.

Foremost, thank you for posting this feed. My neuro told me that over 50% of people with epilepsy also have psychogenic non-epileptic seizures (PNES). How an MD can determine this throws me for a constant loop! The neuro says that sometimes there is so much fear, anxiety, and apprehension about having a seizure that the body reacts 'psychologically'.

I have been diagnosed with both generalized convulsive epilepsy and PNES; however, since most EEGs in people with epilepsy are normal interictal, I find that I really don't care what the MD calls it. You know what it is like in your own skin, right? That's all that matters, hon!

It's why they call it 'practicing' medicine, you know? I wouldn't be too bent out of shape over it; recently, I contacted community mental health to work through anxiety and depression issues.

 

[KarenB]

Interesting thoughts, Chelsea, about psychogenic seizures perhaps triggering the regular seizures. Jon's seizures often start with these blood curdling screams that can continue for 10 or 15 seconds -- it's not just air being forced out of the lungs (that also happens sometimes) -- it's a real scream, where he screams, takes a breath, and screams again, and his eyes have a look of horror. This is always followed by a tonic or a tonic-clonic seizure. Several of his doctors have seen these episodes (his neurologist, his epileptologist, and his endocrinologist), along with a number of nurses, and no one ever mentioned pschogenic seizures, although his epileptologist said that they don't register as a seizure on the EEG (what follows does).

I just assumed that it's a type of simple partial or aura leading into a seizure, originating from deeper in his brain. But maybe that's what a pychogenic seizure is??

 

[Chelsea]

Interesting thoughts, Chelsea, about psychogenic seizures perhaps triggering the regular seizures. Jon's seizures often start with these blood curdling screams that can continue for 10 or 15 seconds -- it's not just air being forced out of the lungs (that also happens sometimes) -- it's a real scream, where he screams, takes a breath, and screams again, and his eyes have a look of horror. This is always followed by a tonic or a tonic-clonic seizure. Several of his doctors have seen these episodes (his neurologist, his epileptologist, and his endocrinologist), along with a number of nurses, and no one ever mentioned pschogenic seizures, although his epileptologist said that they don't register as a seizure on the EEG (what follows does).

I just assumed that it's a type of simple partial or aura leading into a seizure, originating from deeper in his brain. But maybe that's what a pychogenic seizure is??

KarenB, it's also kind of frightening that I was diagnosed with psychosis (not otherwise specified) for displaying the bizarre behaviors that were eventually diagnosed as simple and complex partial seizures.

I was prescribed psychotropic medications (for 9 years) that lowered my seizure threshold. So every time I felt worse, the psychiatrist would increase the dosage of the psychotropics; this increase would trigger more epileptiform activity. It eventually got to the point where I discontinued all medication on my own---it was only then, when I started having T/C seizures, that the ER/neuro consult diagnosed epilepsy.

I read on PubMed, NINDS website for literature searches, that this does happen! To think that all of that time I was treated for the wrong condition. It just goes to show that once you have a label, especially a psychiatric one, it is difficult to shake. I vehemently disagree with labels, even though we have epilepsy, we are not 'epileptics'. This disorder does not define who we are! I am Chelsea who is a person with a lot of different unique characteristics and traits. It is difficult for me to separate the effects of E from my own personality and daily function, but I am working on that with a therapist, who is teaching me to live!

I agree with the CWer on this feed who said NOT to mention psychogenic non-epileptic seizures if you have to go to the ER or need to seek emergency treatment.

Hope everyone has a blessed Saturday! I am going to relax; study; and paint. [I have found that crafts are very therapeutic!]

<3

 

[Loopylil]

Hi I can relate,
Since 2007 it has been a constant battle every neuro appointment I'm diagnosed with epilepsy then the following appointment it's non epileptic. Due to the history of childhood trauma they seem to think that it's because of that. Will accept both conditions but will not allow him to rule out epilepsy just by me telling him about my childhood )

 

[Cint]

Foremost, thank you for posting this feed. My neuro told me that over 50% of people with epilepsy also have psychogenic non-epileptic seizures (PNES). How an MD can determine this throws me for a constant loop! The neuro says that sometimes there is so much fear, anxiety, and apprehension about having a seizure that the body reacts 'psychologically'.

I have been diagnosed with both generalized convulsive epilepsy and PNES; however, since most EEGs in people with epilepsy are normal interictal, I find that I really don't care what the MD calls it. You know what it is like in your own skin, right? That's all that matters, hon!

It's why they call it 'practicing' medicine, you know? I wouldn't be too bent out of shape over it; recently, I contacted community mental health to work through anxiety and depression issues.

Chelsea,

IMO, I think anyone having seizures should be seeing a dr. who actually specializes in epilepsy, an epileptologist, not just a regular neurologist. They don't have all the facts. IMO, I think the dr. who said that is full of BS. Of course those of us with E are going to be full of anxiety, fear, depression or whatever else may come to mind, either due to the drugs/seizures. Perhaps it is psychological, but a seizure is a seizure, regardless. And I agree, they only "practice" medicine and we are their "experiments". That is why I say, those with seizures that come and go need to see a specialist who can make a right diagnosis before things really get bad. And if suffering from depression, find a neuropsychiatrist. They know how to treat this sort of depression better, also.

 

[Cint]

I was prescribed psychotropic medications (for 9 years) that lowered my seizure threshold. So every time I felt worse, the psychiatrist would increase the dosage of the psychotropics; this increase would trigger more epileptiform activity. It eventually got to the point where I discontinued all medication on my own---it was only then, when I started having T/C seizures, that the ER/neuro consult diagnosed epilepsy.

I was prescribed a psychotropic by a shrink that brought on Type 1 diabetes. Once I was taken off the drug, the Diabetes was here to stay along with seizures!

I read on PubMed, NINDS website for literature searches, that this does happen! To think that all of that time I was treated for the wrong condition. It just goes to show that once you have a label, especially a psychiatric one, it is difficult to shake. I vehemently disagree with labels, even though we have epilepsy, we are not 'epileptics'. This disorder does not define who we are! I am Chelsea who is a person with a lot of different unique characteristics and traits. It is difficult for me to separate the effects of E from my own personality and daily function, but I am working on that with a therapist, who is teaching me to live!

I don't like labels either, but living with epilepsy and suffering from a depressive disorder along with diabetes is quite a lot to handle. And yes, I've had plenty of TC's in public, had the stares and still get those looks sometimes. If I'm just thinking about something, sometimes my family thinks I'm going into a CP and will ask if I'm ok. But I don't feel like I have a "psychiatric" label. Lots of folks around the world suffer from bi-polar and depressive disorders. I also was in therapy to sort out all of these different issues I had to deal with and it helped tremendously. I am a person first, with several issues. That is what I tell folks.

 

[Cint]

Since 2007 it has been a constant battle every neuro appointment I'm diagnosed with epilepsy then the following appointment it's non epileptic. Due to the history of childhood trauma they seem to think that it's because of that. Will accept both conditions but will not allow him to rule out epilepsy just by me telling him about my childhood )

The epileptologist and neuropsychiatrist I was seeing back in the '90's at an EpiCare Center asked me at one appointment if there was any childhood trauma, such as sexual-abuse, beating, etc. They were insinuating that is what brought on my E since I didn't have any head trauma or brain infections as a child. My seizures started when I was 22 years old.