Just released from hospital! I am lucky to be alive!

[tam bam]

I feel lucky to be alive today! I am glad to be with the world and be with everyone! From what I understand I almost lost my life last Thursday due to seizures. It was too painful to write about until now plus I didn’t have all my thoughts together until today.

I went into status epilepticus Thursday at work at lunch time and I had to be rushed to the hospital via ambulance. When I arrived at the hospital I finally awoke from the seizure but couldn’t speak and they had never seen anything like it before. They thought I was an alien or something but the nurse was very polite. Soon after the nurse made me answer a bunch of questions I started to seize again and that’s when they called the neurologist in and my family doctor. The nurse gave me some adovan (simple partial?) and I didn’t wake up for a little while).

I then awoke in the Critical Care Unit of the hospital to my surprise. I had no family by my side and no one to explain to me what had happened. I was about to freak out! Then one of the nurses came in from the CCU ward and she explained a little as what went on to me but she would not let my family in to see me due to them working on me at the time. The next day (Friday), my family gets to come in and see me and everything was going pretty well until I have another seizure and I stop breathing. From what my husband tells me the nurse had to perform CPR on me. He tells me I am lucky to be a live. After that I remember waking up and my mother and another male nurse asked me for my out of town neurologist information (I have been treating with a neurologist from another city for about a year.) The hospital’s neurologist could not handle my seizures and needed to make contact with my treating neurologist so I told my mother and nurse the info. The male nurse tried to make contact but there was no answer at his office so I gave the male nurse his after hours number and told him to tell the answering service that it was an emergency. He made contact with my doctor and my doctor did speak with the hospital neurologist and made him understand my seizures a little better. He told them I am not faking and that I have a rare condition and that I am about to go to a research hospital to get some better help and to up my meds immediately! Yeah for my doc!!!! He saved my life and so did the nurse that gave me CPR!!! Thank you!!!

I was finally moved to a regular room sometime Friday. Friday night was just a big blur but I do remember the nurse giving me a the wrong medication and I told them so. I was very upset about it. Also they gave me my medication late and made me go into a seizure. It was just a small one though from what my mother said. My mother spent the night with me and I was okay for the rest of the night.

The next morning (Saturday morning), I was feeling a little more level headed and remembered that the doctors wanted me in the hospital until I went to the research hospital. Which meant I was going to be released until Tueday (tomorrow). I decided that I was leaving for my own good because the nurses kept giving me meds late. They were already late with meds. I pulled out all of my ports in my arm to my IV’s and about that time from what my mother said I went into a seizure and that is when the attending neurologist walked into the door and saw everything. He saw what I did but my mom explained and told them the nurses were with holding meds and caused me to go into another seizure and that I want to be released or else I was going to go home on my own. He then tracked down the nurses in charge and demanded my meds and agreed that I should go home. About that time I came to and told him the same thing and he agreed. I apologized for being a bad patient but he stated I wasn’t and just said I was looking out for my own good. He stated that he just didn’t know enough about seizures and encouraged me to go to the research hospital and see the epileptologist and get some better help.

So far I have taken the increased dose in the meds and I have had four more seizures. I go to the research hospital on Wednesday. I just hope I don’t have to go back to that other horrid local hospital anytime soon. They do not know enough about seizures to help me but that one nurse saved my life for giving me CPR. Thank you to her. With her I feel I would not be here today telling this story.

tam bam

[Nakamova]

Wow TamBam, I'm so sorry you had to go through all of that. It seems that ignorance about epilepsy, even in a hospital (or maybe ESPECIALLY in a hospital) can kill you.

I hope you can relax and feel better over the next few days, and that the research hospital is top-notch.

[Cint]

TamBam,
I'm glad to hear you're still with us, but sorry to hear of your exasperating experience.

It is unbelievable the ignorance of epilepsy, even in a hospital setting. I see an epileptologist and an endocrinologist at the same hospital, one is on the 4th floor the other is on the 6th floor. On one appt. with my endo, I went into a complex partial, and they all stared at me like I was from another universe. They had never witnessed a seizure before. When I came out of it, I had to explain to them and told them that if I were to go into a tonic clonic, please call my neurologist @ the same hospital. Please, get on the same page, at least.

[dfwtexas]

I am so sorry you had to go thru all this, glad you are doing better. Sometimes when my seizures are under control, I don't focus on how this can happen to any of us. I will keep you in my prayers!

[gigi]

Tam Bam:

So sorry about your ordeal at the hospital. Be sure to get all your records from the stay, as soon as you feel like it.
Hope you feel better soon -

Take care,

gigi

[occb]

*Supermassive hug* I'm so happy you're still here with us. What a nightmare ordeal you've been through. This is just awful. I hope the research hospital is able to give you the help you need and deserve.

Was there any indication at all that your seizures were getting worse before the status?

How are you doing today? Are you resting?

[tam bam]

Thanks to everyone! I really appreciate all the support and prayers I can get.

To answer you question Occb. I we having some pretty unusual seizures before the status. Example: I lost my bladder during a seizure before the status a week before and for three days before the status I was angry at the world. So yes, I had an aura going on before the status hit.

[seizingbeauty]

Hi Tambam,
I'm glad you're here to write to all of us. The mess at the hospital must have been a nightmare. Take care of yourself!
Hugs Cat

[occb]

If you were angry for three days straight, that might have been a non-convulsive status, or aura continua you were experiencing. Did they give you any added meds you can take in case the same unusal symptoms show up again? (ativan, clonazepam) or are you going to hightail it to the ER if you have ongoing anger signs again?

[matchu]

I am so happy you are alive!

[horsehead]

I'm so sorry you went through that and so happy you are still alive.Is there any way you can get to the research hospital now. I'm so worried for you.

[forward2007]

I can't even imagine what that must have been like. Good to hear you are OK.

[valeriedl]

I can't believe what you went through, and the hospital. That's rediculious! Glad you made it through it!

[imwithcoco]

I'm a newbie here, so we haven't met yet. Let me start off by saying hello and second, thank goodness you're O.K. It's hard to believe that in this day and age, in a hospital of all places, you would have trouble like that. I know that had to be scary for you. Supportive family is invaluable to us at times like that, though.

My first two seizures were grand mal during my sleep. It first happened when I was in the Navy, stationed in California. I worked on jets out there, and just went to work for a normal day like always, then came home, went to bed, and the next thing I knew I was waking up in an ambulance. Life as I knew it CEASED to exist. There would never be another day on the airfield for me again. I woke up in an ambulance again after my second, too.

Anyway, it's not about me. It's about you. Just letting you know, as many of us here probably can, that I can relate to that ambulance thing. I was never able to shake it for some reason. Gave me the creeps.

Glad everything's a little better for you for now. Hang in there, try to relax and not to worry. Just doing that and being on this site the last few days has really helped me a ton!

[Meetz1064]

glad that you're OK, tam bam. What an awful experience to go through though..... (((HUGS)))