Pseudoseizures and A Mean ER Doctor..

[Kate]

So.. apparently last night my ER doctor tried to convince my Mom that my seizures are pseudoseizures. My mom said, if this is the case.. wouldn't the doctor's we have seen at IU Med Center mentioned this? Wouldn't her normal neuro have mentioned this? My mom was getting annoyed.. ( Kind of off subject but t he doctor asked what I was going to be and when my mom told her a psychiatrist the ER doctor LAUGHED. My mom got really angry, and my mom is the calmest woman in the world. ) She even goes.. "Are YOU a neurologist?!" lol

We get home, I'm extremely out of it because they gave me entirely too much pain medicine, and call my neuro, who says, there are many SIMPLE ways to tell the difference between pseudoseizures and seizures and that is why she has never mentioned them.

I've been reading up on pseudoseizures and my seizures are different from these.. I'm annoyed at the ER doctor for this. *sigh*

Why would she think she knows more than Neurologists at IU Med Center and my Neurologist I see in Evansville?! Grrr!

OH, and the reason I was in the ER to begin with, is I had a grand mal that lasted longer than five minutes and my neuro said I needed my levels checked.

Also.. Im still very out of it. Pretty bruised. Head hurting. And just like.. blah. Sorry if I make no sense. Anyway, since my neuro says she knows I don't have these pseudoseizures, which I still don't get.. can someone explain them more to me? I read on them, but I'm still a little confused. They seem weird.

I had to add.. that for some reason this really upset being. Dealing with all of this has been hard enough, but since I have little understanding of these pseudoseizures which she called to my face "fake seizures" made me sob. It was like having someone tell me I'm faking this. Like oh it's just so hard.. I mean I just got out of a cast from breaking my arm during a seizure! Yeah, I REALLY faked that one. And Ugh I don't know why it upsets me so much.. but it really does. Someone help, please?

 

[RobinN]

Well first off Kate, she is not educated on PNES - psychogenic non-epileptic seizures. They are not fake. A person is no more in control of a NES than they are an epileptic one. The brain shuts down for some reason. It can be due to extreme stress, or abuse. Other reasons I am sure too.

We had that same dx from UCLA. I learned a lot. You can have both. It is possible that Rebecca did. I doubt it, but I don't know for sure. I am not sure if anyone knows for sure if they are having both. I personally think that the brain still is unhealthy for some reason. It can still be due to nutritional deficiencies. Many neurological disorders are due to this. I personally worry about the number of drugs you are on. But that isn't my business. I just think it can have a lot of psychological effects that aren't in your control.

Many ER doctors are useless. Some are angels. We flip the coin when we go through those doors as to who we will get. Chalk it up to experience and to ignorance, and move on. You need to keep moving forward and use your energies doing so. None of us need to use precious energy fumeing over the idiots that call themselves caretakers.

Heal yourself piece by piece and I think you will find peace. (haha good play on words)

Just don't let your thoughts go there Kate. Or if you do, just learn all you can about them and know in your heart that it doesn't match what you are dealing with. Then one day you will be able to help someone else decifer if they have this type of seizure or not.

Remember... it is still the brain on overload.. just unloading in a different way. There is nothing to be ashamed at with PNES. Therapy can help with both types of seizures as with any chronic illness. We would be lost without Rebecca's therapist.

I hope this helps and that you can rest easier.
Have you read: Epilepsy: a New Approach yet?

 

[Kate]

Thank you.. I am so glad I'm not the only person that has been told this. Just the fact that she said they were "fake" really hit me hard.

Anyway, the book is by Adrienne Richard, correct? I hope so.. because that's the book that we have coming to us in the mail. It's ordered, so it should be here someday soon.

I'm also sick of taking all the medicines. I'm sick of all of it. I'm off pain medicines now though (so that does cross some off the list!) However, I'm still pretty annoyed with everything else.

I am literally at my wits end. And now I DO feel like I'm going nuts. Ugh, like I'm trying so hard to be normal and I keep swearing I'm not depressed to my Mom but now that she's in bed I'm sitting here typing this and sobbing. I know if I tell her though, she'll take me to the doctor and what will they do.. ADD MORE MEDICINE.

We don't have the Neurofeedback anywhere around here.. we looked. And I feel so hopeless right now. I mean I feel at an all time. I'm supposed to be the one who going to help people.. yet somedays I want to give up and just commit myself because I think I'm going insane from all of this.

 

[RobinN]

Darn I had this begun and then attempted to find something and lost my post...

You are not going crazy Kate. It is good to cry every now and then. Would be weird if you didn't. One thing I would suggest you do is take the time to create in your head the kind of life that you want to realistically see yourself having as you move forward. You need to put in place those people around you that will help you achieve that. Not those that just will hold you back.

If you are able to move a little bit, perhaps start doing some exercise. I am sure it will help you feel better about yourself. Even if it is just floor exercises. Getting outdoors is always a good thing though.

Also I can't say enough about therapy. I use to tell my kids if their eyes hurt I would take them to an eye doctor. If their ears hurt, they would see an ear doctor. If your heart hurts a therapist is a really good doctor to talk to. You can't listen to those that think it is only crazy people that see therapists.

I do believe you will benefit from reading the book. Why don't you PM me the city you life in, or the area around your Univ. I can't imagine that there isn't any NF practitioners there. I was searching to see if you had posted your school name, (that's when I lost my first post).

 

[RobinN]

Something to look at:

http://www.nwbiofeedback.org/
http://directory.eeginfo.com/website.asp?eeg=1262
http://directory.eeginfo.com/website.asp?eeg=1847

http://directory.eeginfo.com/search_process.asp?searchtype=zip

 

[brain]

Here's more clarification and specifications and breakdowns

Actually I think your ER Doctor may be merely
"Out of Date" more than anything else - here's
why - I posted this in the EFA Forum recently
in a generalized simple layman's terms:

==================================

In the OLD DAYS - it used to be lumped up altogether
as "Pseudoseizures"... but it is incorrect. Today
everything has been broken down into correct
categories:


1) N E A D - Non-epileptic Attack Disorder: People
who "fake" seizures to get attention, can be a
psychological or mental disorder, people who do
this for 'fun' and wants attention, et cetera.

2) N E S - Non-Epileptic Seizures: These seizures are not
faked, the people are not insane or crazy, but rather,
it's very real. However in the light of this perspective,
there is no brain wave abnormalities or activities at
all. It is divided into two divisions:

I) Physiologic - meaning there's a underlying physical
problem that's triggering the seizures, such as diabetics,
cardiac, other health issues that are provoking the
seizures. These can be treated properly under the proper
care of the Health Care Specialist of that Specialty(ies).

II) Psychogenic - meaning there's an underlying psychological
factor involved anywhere from emotional, mental, physical,
or some type of trauma or some traumatizing experience
whether from the past or current events, and can include
abuse, violence, attacks, PTSD (Post Traumatic Stress Disorder),
depression, anxiety, and much more.

Psychogenic requires patience and teamwork with the
Doctors and Patient as well with the family if all possible.
Cooperation is needed, if one is to overcome, and it can
be done and accomplished, but it does take time and
it doesn't happen instantly or overnight. Patience is the
key and working to the goal and one step at a time,
you can make it!

========================


I hope this posting helps clarifies everything to
perspective in the most shortest narrative manner I
can sum it all up.

 

[brain]

The posting I had made doesn't imply towards you
but rather implies to the breakdown of the
"pseudoseizures" itself and the proper categorization.

However if your Neurologist has classified you with
Epilepsy and specified it, then you have nothing to
worry about!

 

[Bernard]

I think some ER docs use these:

 

[CJR]

Many ER doctors are useless. Some are angels. We flip the coin when we go through those doors as to who we will get. Chalk it up to experience and to ignorance, and move on. You need to keep moving forward and use your energies doing so. None of us need to use precious energy fumeing over the idiots that call themselves caretakers.

:agree::agree::agree:

ER docs are (IMO) nothing more than the band-aid of the healthcare system. They may stop the bleeding but they're not exactly reliable.

 

[RobinN]

I did not find that the above list of seizure related occurances is NEW school.
We were in one of the top Teaching Medical Hospitals and it was not broken apart for us.
It was explained to us in terms of one type or the other.,, Epileptic or Psychological.

It took months and months of research for me to find that there is a difference in terminology. That the word Epilepsy is just a label and a confusing one at that. It would seem that many in the medical field would pick up on bits and pieces of the disorder and make assumptions and call them fact.

 

[CJR]

Is anyone else frustrated by the fact that Doctor's only have a blurry sense of what is or isn't Epilepsy? If they can't get the facts straight then how are the patients? Or the loved ones of patients? It seems to me that Doctors still contribute to a lot of the myths regarding Epilepsy. It's a fast growing pet-peeve of mine! Sorry the evil me took over for a second.:gob:

 

[RobinN]

Yes I am / was frustrated. I decided at some point.. I think Zoe helped me understand it better, that it is just a label nothing more.

I think doctors in the past banked on the fact that we were all ignorant and in the dark. They could prescribe 4 medications at once because they were the "magic" pills that we hoped would make us or our loved one better.

Now with the internet, the word is getting out much quicker, and we are able to have access to information that was kept in the basement before. We need to use our doctors for those lab slips and test results, and find others more knowledgable. The ones that walked away from the insurance rat race. Those are the doctors to listen to. They are not controlled by what can or can't be prescribed or diagnosed.

It is frustrating to walk this road alone sometimes, but that is why people like Bernard are our heros. For providing us a place to share ideas, and information, to make more informed decisions about our care.

I do agree with you though, problem was when I sat being frustrated, my daughter was not getting well. I used my intuition and have based my directions on faith.

 

[CJR]

Now with the internet, the word is getting out much quicker, and we are able to have access to information that was kept in the basement before. We need to use our doctors for those lab slips and test results, and find others more knowledgable. The ones that walked away from the insurance rat race. Those are the doctors to listen to. They are not controlled by what can or can't be prescribed or diagnosed.

I was very upset when the Neurologist couldn't get my daughter in for a full 6 weeks after her diagnosis but I've actually found a silver lining. I'm so much smarter about Epilepsy, Epilepsy drugs, their side effects, alternative Therapies, etc. I know now that when I get into that Neurologist's office I will be able to "hold my own" in the conversation. Not to say that I won't listen to their advice but now I have a better idea of what to expect.

And it's all because of what I've learned here during the six weeks the doctor was too busy to see my daughter.

Gotta love CWE!!:wave:

 

[RobinN]

I was told two months .... at the same time was told it might be TIA's. My daughter had extensive memory loss, vision loss, seizures...
Talk about sending me into orbit.

 

[CJR]

I think I've been sent "into orbit" a time or two myself. Patience has never been one of my strong suits. We're just about a week left until her appointment so I'm trying to get all my ducks in a row. So to speak...

 

[BuckeyeFan]

ER doctors

A couple of points about ER doctors - the vast majority of which are great at their specialty.



1) They are Emergency Doctors. Their specialties are Trauma and immediate medical intervention for heart, stroke, respiratory, etc... Damn few of our neuros, epis, research gurus, psychs, or others could ever function in their environment. It is very demanding with little opportunity to see success. If the patient dies, they are there to see it. If the patient has a fantastic, happy recovery, they will never know because they rarely hear about the patients after they are transferred. They see them wheeled away and turn to the next 10 patients in line.

I know this from experience. I worked side by side with these folks for 20 years as an EMT. The ER is not an easy place to work - intellectually or emotionally.

2) None of us should be taking their word as the final diagnosis. I don't think I have ever left the ER without being referred on to my neuro, family doc, or other specialists. Remember, their task is intervention with the immediate medical issue. They should send us on the next step and we need to follow it.

:soap:

This is NOT to say that there are not bad doctors out there. There are and unfortunately Kate ran into one. Even among those 90% are trying to do what they feel is right. :agree:

If I have severe chest pains, I am calling 911 and going to the ER, not my neuro, even though I think the world of him as my neuro (he has my tc under control).

:twocents:

 

[drummerchica02]

When I first started having partial seizures in 2006, I was working with a bunch of nurses and had several one day (first time it had ever happened). After checking my sugar, blood pressure, all of that stuff, they finally decided to take me to the ER after another one started and I couldn't talk to them correctly. The Er doctor in Evansville did a whole bunch of tests, but of course everything had stopped by time we made it to the ER so they were at a loss. They did some blood work and a CT scan. Finally, they called in the neuro on call. He took one look at me, listened to what I described, and told me it was just "stress" and to go home and not worry about it. I followed up with my family doctor, who seemed more concerned and referred me to a neurologist in Evansville....who ended up being the same guy I saw in the ER. He remembered me, and told me again, without running anymore tests, that it was just stress and I was fine. My boyfriend was with me, who stood up to him and demanded that he at least run tests to prove nothing was wrong. My boyfriend, who by this time had witnessed several, said it looked like the right side of my body was having a seizure but I was still conscious. The stupid neuro said, "It is impossible that she is having seizures because the MRI she had in the hospital would have found something." Problem? I didn't have an MRI, just a CT scan, and they had never done an EEG on me. Well, my insurance ran out before I could get a second opinion, so I waited until I moved to Indianapolis to try again...they did an EEG and an actual MRI, and the neurologist listened to me describe my seizures. He knew right away what was wrong with me, and the scarring on my MRI confirmed it. Had the stupid doctor in Evansville not written me off with "stress" right away, or bothered to know the difference between a CT and an MRI, it would have saved me years of problems. I feel your pain Kate. I understand that ER doctors themselves can't be aware of everything and do the best with what they have at the time. BUT, they should be upfront about those limitations and not talk about something they have no experience with. My problem wasn't with the ER doc, though, but with the neuro on call at the ER.

 

[Crystal11]

Brain- that is a good explaination of psuedoseizures. My good friend used to come to my neurology appointments with me and when he came with me to get my AEEG taken off, he found a magazine talking about migraines which he does have. He found that it talked about Topamax which is an AED or migraine med. Anyways I told him that it is used for seizures, and sure enough he wanted to be on it. He never had seizures as a child or any other condition that would cause it. One day out of nowhere he started having episodes that look like seizures but many things about them were off such as having his eyes closed all the the time, very short episodes of jerking or trembling or shivering. It got worse over time and as he asked me questions about seizures he would change how "perform" them. He always used to help me with my seizures and never had such an interest in them until he was on an AED. We even told him that during his episodes that he should be able to remember everything we tell him. Now if they were real in any way then he would never remember much or anything at all. One day, my friend sang a kids song and Austin remembered almost everything about the song! Then he would always cry and say: "I hate this..". He even ended up in the ICU because the ER staff didn't know what to do with him. They wanted to make sure nothing else was causing the episodes. He has asthma and vision impairment and cardiac problems which are mild. So they druged him up with everything you can think of to basically stop him from doing them to himself. The ICU nurse told my Sister and Austin's wife to leave because he would do it again once they showed up. He did it when I went to the hospital to see him too- I just left angry. It sounds like he has NEAD exactly. Now he had a VEEG and he had a GM episode type event and they found out that there is no abnormal brain activity during them- meaning he doesn't have Epilepsy or another condition causing seizure-like events. He is still on AEDs but will be getting off of them I'm sure. He has always tried to get attention for many things before- but I would never imagine him to do this at all.
It hurts my feelings that he wants to do this and almost make fun of me and my sis and friend who really do have epilepsy. He has done the same thing to us about hearing impairment- he now has hearing aids that he doesn't even need! It makes me so mad. Another specialist told me that he is doing these things to copy us, because he wants to be like us. But my question is why? Why would someone want to on purpose become or develope something they don't have at all? Why?

Anyways- psuedoseizures took a while to find in him- but I knew it from the beginning of course because I have Epilepsy as does my twin sis and my best friend.
He needs counseling and other help for those than AEDs.

 

[vapour]

I think im getting to a point where I am going to make a serious decision for myself. That is.. to never walk into an ER again (for a seizure) Ive never been told this myself... which im suprised about because they seemed to have no clue about partial seizures...however... people that work at the ER generally dont care about your life at all. Your life to an ER personell is meaningless and worthless and they could not care whether you get treatment or live or die.... at least in my experience.

 

[Crystal11]

I'm pretty sure E.R. staff do care about people's lives. I went to the E.R. in September 5th for two seizures close together. My family doctor suggested I do if I had two close together just to get med levels checked and to make sure that nothing else is happening that I may not be able to tell. I went by ambulance and was postictal for the majority of my ride and some time in the ER. I got dates and times, places and names wrong but eventually I was fine. They checked the meds I was on- checked my leves which was a little low but not enough according to them. They said that its just a break-through seizure and to go see my neuro for med adjustment or whatever. They watched me and followed precedure like they are supposed to. I felt they did a lot for me and I didn't even have a seizure while there- just postictal.
For some reason when I go to E.R- there is always a patient having a heart attack. Thank God I can turn my hearing aids off. I just can't tolerate hearing something like that. I prayed the whole time for that man too.

I hope ther ER nurses and doctor learn more about complex partials. I made sure that my friend explained it to them just so they would know. She has epilepsy too and knows me very well which helps in a seizure situation. Partial seizures are just not as well known as generalized seizures are. The best we can do is educate.


Take care,
Crystal