I'm confused about status...

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LJ-Bain

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So I had a crazy week last week as some of you know.
I was declared as being in status epilepticus but I guess it would have been only in a partial state. I could hear what was going on initially but not respond or move.
They ativaned me up and no response.
Then they sedated me and intubated me...I guess a medically induced coma? Yes/no? I have no memory of this because I was sedated and intubated for a whole day because it was only way they could stop me from seizing.

I was always open with them in my medical history that some doctors think I have epileptic seizures and some do not. I've been to this very same hospital to help me through clusters.

I can't feel betrayed because only people who know you and love you can truly betray you. They don't know me.

But for them to turn around and state that I am purely psychogenic are they retracting their diagnosis of status epilepticus?
Why did they put me and my family through that then? I've been co-operating. I think they thought I was agoraphobic (fear of crowds) because I prefer smaller gatherings and sometimes feel overstimulated in large noisy crowds and avoid them. I thought I was just introverted.
I am told now to stay home and just use ativan for clusters. They were very firm about this. They must think I have panic attacks but I am not afraid during them. I don't like them though. I may cry a bit afterwards.

Should I be worried? Ativan didn't stop them before?

Am I being too nice and patient?

I feel pretty detached from it all now.

Is this an extreme case or does this happen alot?

Just looking for answers that won't come. I'm keeping my head above water though. My family is lovely and understanding as always and I'm putting them through hell I think. Anyways, same old story, same gal.
 
Is there any way you can have a conversation with the hospital neurologist about some of this stuff? Face to face? So they can justify their ridiculous "diagnosis"? So that they have to take personal responsibility for any pain and suffering you undergo the next time you have "psychogenic" seizures, and end up in their ER once again?

I'm serious abut this. If you can't see their neuro in person, get something in writing -- their full report of what happened and what they did to get your seizures under control while you were there, plus their diagnosis and recommendation for Ativan-only treatment. Tell them you need the information for legal reasons.
 
Thanks Nakamova.
Apparently I can go to the hospital and request my records. Face to face won't happen though. Since our health care is free so to speak our health care system is overtaxed and doctors are overworked and therefore they do not have alot of free time to dedicate to people questioning their methods. Plus it was a team of 3 neurologists of varying degrees of experience. A ER resident is the one who said I was status.
I understand why they consider them psychogenic. I tick alot of the boxes for it but not all of them. The hormonal connection is a glaring one.
I don't want to be intubated again though. It's unfortunate that I am allergic to phenytoin (or dilantin) because this is one of drugs typically used to treat status and one that would help them rule out things.
I'll be able to get the reports from my GP in a week or so.
Thanks for your support.
We really are going to try to stay home our next time we cluster or go supposedly status.
It's only partial if it's not psychogenic.
Apparently they were worried about my breathing but I don't want to be intubated again.
That was hell.
Just intubating me with midazolan has high morbidity/mortality let alone the reasoning behind it.
I don't know what the right thing is to do here. I just have to go with the flow for now and cross my fingers.
 
understand why they consider them psychogenic. I tick alot of the boxes for it but not all of them. The hormonal connection is a glaring one.

Okay.. I can certainly see why you are confused. They say one thing then change their mind. They need to give you a definitive diagnosis.

I would definitely go to the hospital and ask for a copy of your complete admission including the various consults, EEG reports, pharmaceutical reports, etc.

Now the part about the hormonal connection. Maybe I have missed something, but catamenial seizures are ALWAYS associated with epilepsy not psychogenic epilepsy or at least my personal experience and my sister's experience too.

Below is a link from NYU where it talks about psychogenic epilepsy and how important it is for physicians to know FOR SURE, because they would not want to use the amount of drugs necessary to bring someone out of status unless it was epilepsy, if really not needed.... and you seemed to need them. Geez, you were in the ICU and intubated. I just cannot imagine that happening for psychogenic epilepsy. The risk is too high for you and for them.

http://epilepsy.med.nyu.edu/epilepsy/psychogen-non-epilepic-seizures

You hang in there. Try to get enough sleep, keep hydrated and eat well. We are all here for you.

((((LJ))))

Take care
Mary
 
Hi LJ. I am sorry about this situation. I am begining to wonder about my seizures. When I went to the ER last week durring my cluster. The doctors did shoot my with the adivan but I got the feeling that they did'nt believe I was seizing since I was aware durring the seizure and I did'nt lose control of my bladder. I have never lost conscienceness durring my seizures. Even the epileptoligist does'nt think it was a seizure because I did not have the audible aura I would have before a TC. I even had a right temporal lobectomy!! Does this mean they should have not taken out part of my brain? I just read the NYU report thanks Mary K. I'm going to have Viedo EEG on Friday for 7 days. So now I really think its all in my head!! I'm sorry to take over your post but I am having the same questions and concers your are having. I wish you the best and I will let you know of the results of this viedo EEG.
 
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