What do people think about psychogenic seizures?

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LJ-Bain

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Just a question based out of curiousity...

For everyone out there who has an official diagnosis of epilepsy or some form of a seizure disorder how do you feel about non-epileptic seizures?

Sometimes I wonder if people feel like psychogenic seizures are not as worthy of sympathy, or that they don't suffer as much or that they are just making things up and looking for attention?

Is this too controversial?
 
Yeah...probably too controversial.
Sorry!
The only story that anyone can truly understand is their own.
It's just that having been on both sides of the fence I see things a bit differently as I'm sure others do as well who know the challenges faced with a psychogenic diagnosis and not knowing which "world" to go to for help.
 
I don't see it as controversial at all.

Actually I think it's a good question As long as we're all respectful to each other.

Just wait a while longer for someone to answer.

I do know that some people think that psychogenic seizures are "all in your head" when they really are real seizures but I don't know too much about them and am curious to see what people say.
 
No not controversial. I tried to post before and had technical,difficulties with my iPad. Irrespective of the source of the seizures they are still just that. I can empathise with you as I am sure that there is a stigma as with all types of depression, anxiety and other mental illness. I am also sure that many people may receive a diagnosis of psychogenic seizures because it does not show on an EEG. So, I am not really sure how prevalent it is or if it exists at all (perhaps these seizures are epileptic seizures instead). It is well known that stress can trigger seizures in people with epilepsy and they are not called psychogenic. Where is the line drawn I wonder. The impact nevertheless is the same regardless of what causes the seizure. My thought is that in the general community there may be stigma but amongst the vast majority of those with epilepsy or who have seizures for various other reasons it does not matter. If there are psychological considerations they are only important with regards to how a doctor would deal with your treatment. With regards to receiving support here I think the root cause doesn't make dealing with seizures better or worse than the next person.
 
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Thanks Trinity and Epileric!
If the medical world is confused about them I can only imagine what the general public thinks about them.
Interesting idea that perhaps they might be all be epileptic!
The treatments are different but the way life is affected is probably not too different.
 
I will get in on this since dr.s think I have both epileptic and non epileptic seizure and to me a seizure is a seizure I know the other ones dont hurt brain and they are from stress.that wat someone els who was there thought I think he think I make shit up.
 
Stress can be a trigger for both that is for sure.
I hate it when people think you "make sh*t up". Just because they are psychogenic does not mean they are not real to you.
 
Its a possibility that Im having them but no one (medical professional) is talking to me about them. Heck, they wont discuss that it could be seizures in general. 6 months before I had an aneurysm (this is not to scare anyone, its just my story) I kept complaining of weird things happening to me. My gp sent me to the cardio, gastric, ear dr, you name it she sent me. To no prevail, they found nothing, absolutely nothing wrong with me. I kept complaining, finally had ct, mri, echo, and other test, still nothing. It was as if I was making it all up, and thats how they treated me to. I was very very very upset. They pretty much told me I was fine, and asked if I was under stress etc. Well, 6 months to the day, I had an aneurysm rupture of the PCA (post communicating artery). So, even tho test showed nothing wrong, it was there. Invisible to the eye and all the x-rays etc. I freak out when I have any symptoms simular to those leading up to that day. Just because they are psychogenic doesnt mean what you or I are experiencing isnt real. I wish I knew tho. Im still waiting on a diagnosis. I take the meds now as a precaution. I know they dont know what they are talking about all the time (the doctors that is). The brain is still a GIANT Puzzle to them and may remain so if they dont start thinking differently.
 
Good Post!

LJ-Bain said:
Just a question based out of curiousity...

For everyone out there who has an official diagnosis of epilepsy or some form of a seizure disorder how do you feel about non-epileptic seizures?

Sometimes I wonder if people feel like psychogenic seizures are not as worthy of sympathy, or that they don't suffer as much or that they are just making things up and looking for attention?

Is this too controversial?
Click to expand...

Good post. It was good for me.
 
maryltyme
Thanks for sharing your story. I'm glad you acted on your intuition but it sucks that no one would listen to you. It just goes to show how little that the medical world knows about the brain. Broken leg? Sure they can fix that but once it gets more complicated I think they kinda stumble around, do tests and cross their fingers. It's the "practice of medicine".
I hope that they don't give up on you...and don't you give up either! I'm glad that you are on meds so it makes me think that they are taking you seriously.
 
I believe psychogenic seizures are merely real (epileptic) seizures that have yet to show on an EEG. I say this as someone who has read 'suspected schitzophrenia' in her medical records, only to be diagnosed with generalized seizures after a car accident just a couple of months after that appointment.

A lot of doctors leave medical school with the attitude (whether they realize it or not) that they've learned all that there is to be learned. My seizure-damaged brain is the product of these attitudes.
 
LJ-Bain said:
Just a question based out of curiousity...

For everyone out there who has an official diagnosis of epilepsy or some form of a seizure disorder how do you feel about non-epileptic seizures?

Sometimes I wonder if people feel like psychogenic seizures are not as worthy of sympathy, or that they don't suffer as much or that they are just making things up and looking for attention?

Is this too controversial?
Click to expand...

I tend to consider it like assault between two people, but in one individual. Being the victim of assault is serious whether the assailant is another person, or oneself. I believe there's a distinct difference between a person acting on their own accord or acting under extreme duress, whether the duress is from a psychological concern or a physical somatogenic origin.
I don't have an huge understanding of PNES or what PNEseizures look like.
I consider it in the same ballpark as temporary insanity.
People have no choice but to be responsive to a stimulus. People have various degrees of tolerance to stimuli and if someone is allergic to spinach and forced to eat spinach it will have a somatic effect. If someone doesn't like spinach yet is force-fed and allowed to eat only spinach for a month... it can still have a traumatic effect, psychogenic, psychological...

I believe one would have to disregard the entire field of psychology to not have regard for PNES. And to me that's just stupid.

But it is my understanding that PNES has a subconscious origin and not a conscious decision process.

Not equivalent to a child having a tantrum because they don't want to eat their spinach because it doesn't taste the same as macaroni and cheese.

:soap:
 
Thanks Petero! I like the food analogy!
Absolutely subconscious origin...which is why it's so upsetting when medical professionals react with anger.
I loved hearing your opinion.
 
Last year when I had my VEEG done, my dr had brought up that I was having seizures that indicated epileptic seizure activity on the EEG, but then there were times that I had a seizure and it wouldnt register on the EEG. He questioned as to what I was having was real epileptic seizures? So he referred me to a psych dr, who I saw and we both talked about alot of things, went over my EEG, talked about how the seizures were, when they occured, etc. Now for years before, I was on Keppra and Carbatrol. Which those two medications together controlled my seizures very well. I had some complex partial seizures and my last grand mal seizure was around the age of 19. But this time, I was taken off cold turkey off all seizure medications. No going half way off... just flat out stopping the medications all together. Both medications were XR kind... so it would take alittle longer for them to leave my body than the regular meds would. But once the seizures started, we noticed right off the bat that I was consious through them and could remember everything, which was a first for me in my lifetime. The nurses had asked if I had ever had simple partial seizures before? My mom said no, (I was so tired and had a huge headache after the seizures, it hurt to talk) so my mom was answering all my questions the nurses were asking. But as we talked, the psych dr and I, we both learned that being cold turkey'd off the medications like that can bring on different reactions to a persons body. Since I was having seizures that did register, and then was put back on Keppra XR, the seizures slowly began to go away and within a couple of weeks of being back on the Keppra XR, they went away. One thing that the psych dr commented on was that if they were truely non epileptic seizures, the Keppra XR wouldnt be able to control them. Keppra XR is a seizure medication that only controls epileptic seizures and wouldnt be able to control non epileptic seizures. So that right there told her what I was having, was probably epileptic seizures that were too deep within my brain to register on the EEG. She said if they started again, to contact her. But that was a year ago, and since then Ive had no more.
 
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