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 neurologist 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 neurologist, 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 neurologist 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 neurologist 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 psychogenic non-epileptic seizures - psychogenic non-epileptic seizures. They are not fake. A person is no more in control of a non-epileptic seizures 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 psychogenic non-epileptic seizures. 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_...searchtype=zip

[brain]

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.

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.

[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!!

[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]

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 neurologist, 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.



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.

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