Hi Jennie
Have you ever tried going to a different Dr. or hospital? I too have ran into drs. that seems like their
favourite saying is 'it's all in your head' or I can hear them talking among themselves in the background.
Well of course it is in your head....how dumb. That is not the way they mean that though, they mean it
litterly. When I switched Neurologists my previous one had the gal to write a letter to the new one saying
'all tests are good and show nothing, she is a very good actress and putting it all on'!! My new Dr. laughed
when he read it to us and told us we could if we wanted sue, that he just didn't know his business.
Change if you have to it may give you a different light on it, and help you get the proper help you need.
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: <jennieshadow@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Saturday, August 28, 2010 3:09 PM
Subject: Re: [epilepsy] Psychogenic seizures.
I have had both seizure types for decades, but they could only find the regular seizures with something they
call a QEEG away from the hospital. I become so stressed in the hospital that I freeze up and cannot move or
speak although I can see and hear the doctor asking me questions and asking me to move my arms or legs or even
a finger.
They do not seem to understand this information you are telling me. I used to know when they were coming on,
but my seizure dog alerts to the epileptic seizures. I have had absence seizures and others since 1980. But
when I've gone to the hospital they can only detect the pseudo seizures and let me go early, believing that is
all I have, even though my dog and others have seen them.
One time I was in a training class to learn to work properly with my dog. I had him stay, then walked twenty
feet away and turned and said, "COME".
He came but upon reaching me he jumped up, hit both shoulders with a paw -- pushing me upright -- (I was not
aware) teacher yelled at me "sit down, he just pushed you up from 45 degree angle" and the others in the class
came and helped me down safely and teacher said that's it for you today. So if that is a pseudo seizure, then
he alerts to them too.
And it was amazing that my dog was so well trained that as soon as he pushed me up he sat perfectly before me.
I was not aware anything was wrong.
I fall down a lot.
The horrible seizures when parts of my body flop are the worst because Shadow has to get up on me & hold me
from falling out of bed or chair or get me to sit or lay down before.
What is horrible is if I am awake during any of it, it takes me back to the only other time I could not stop
what was happening to my body and that is terrifying.
But most of those I am not aware until after and so very tired. I may wake up to Shadow laying on top of me
which he ONLY does for a flopping seizure.
Family noticed the absence seizures in 1980 and ever since.
Thanks for explaining. I wish my dr's knew this. The keppra helps so much and has killed my migraines.
You have all been very helpful. I just wish I could help my new neurologist comprehend. The old one seemed to
know this, but coverage changed and so did the Doc.
I have a vascular illness that is known to cause epileptic seizures. And I also have a high stress condition
that caused me to be often frozen in my bed for up to twelve hours immobile or dur to severe pain for 4 years
once, 5 years another time.
The Vascular disease causes issues all over the body wherever it attacks, seizures are just one of them. The
pseudo seizures are believed to be caused my my stress disorder.
Thank you so very much.
Sincerely, Jennie
Sent from my Verizon Wireless BlackBerry
-----Original Message-----
From: Julie Hope <epilepsyhealth@sasktel.net>
Sender: epilepsy@yahoogroups.com
Date: Fri, 27 Aug 2010 11:04:39
To: <epilepsy@yahoogroups.com>
Reply-To: epilepsy@yahoogroups.com
Subject: Re: [epilepsy] Psychogenic seizures.
Jennie
We were told in a mtg with our daughters Epileptologist that these were definitely not faked that no one could
fake them and were to be taken just as serious as the real one. It is just like someone with diabetes having
a seizure or some other health condition.
He also told us that most all of the people that do have Pseudo ones also have the real ones and the pseudo
ones just come and go depending on the circumstances. Our daughter use to be a Reg. Pyc. Nurse, and being in
hospital and hearing and seeing Dr.s giving her the run-around and talking to themselves saying they were all
in her head (blah blah blah) every time she saw a white object walk by or come in her room she would have
another one which was quite often. They were just Neurologists though and wasn't until she got to an
Epileptologist that she got help. They also have to take the same medication....possibly a little less, but
then again you never know when a real one will hit. They can look like the GM or whatever kind you have, act
the same and unless you have a VEEG and the proper DR. one who deals with epilepsy only you may not get the
proper help. This is the way it was with our daughter.
The ordinary Dr. would panic as they would watch her have 200+ seizures per day and would put her in Dr.
induced coma until she reached the city Dr. This the Epilept. said was a definite NO NO that he has seen
patients die from this.
Just my experience from watching them.
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: <jennieshadow@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Friday, August 27, 2010 5:54 AM
Subject: Re: [epilepsy] Psychogenic seizures.
Wow thank you Trish, you have worked very hard and come so far out ahead. Congratulations.
I understand more now than before by far.
But are pseudo seizures truly intentionally faked?
I have both epi & pseudo
Seizures. Some of the seizures have to do with vein swelling that stops all oxygen & nourishment from getting
to parts of my brain & body depending where the veins are actively affected at the time.
Complex Partial Seizures epi were found in the left lobe that affects balance, emotions & communication.
I have also had the absence seizures evident to family for years.
But the tests are months out so by the time I get to test they are all gone.
Negro Dr told me 5+ years ago scientists found a Panic Attack in which they also found a true epileptic
seizure. I don't have a name for it, nor do I know what they call it. Apparently anxiety & Panic can bring
them on.
Never heard of a seizure counselor.
Sincerely,
Jennifer A Holland
Sent from my Verizon Wireless BlackBerry
------------------------------------
Just a friendly reminder: Please remember to sign your post and remember to clean up messages when you reply
to them. This is especially important if you are on digest. This not only helps out the list owner but, it
makes messages much easier to read when they arrive in our inboxes.
Yahoo! Groups Links
[Non-text portions of this message have been removed]
------------------------------------
Just a friendly reminder: Please remember to sign your post and remember to clean up messages when you reply
to them. This is especially important if you are on digest. This not only helps out the list owner but, it
makes messages much easier to read when they arrive in our inboxes.
Yahoo! Groups Links
No comments:
Post a Comment