Please read - Just got back from visting Rae in the hospital

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rae,

i'm so glad you are feeling better. i think disability is a good idea for you. so many tonic-clonics... no way you can work when having that.

I googled and found this:
http://www.servicecanada.gc.ca/eng/isp/cpp/disabforms.shtml

Not sure if this is the official canada disability site, but it looks like it. The application process looks knarly. But I bet Chad can help, or one of your friends? There's lots of stuff to put together.

Best of luck, Rae. I know it is going to be okay. <<<hugs>>>
 
HUGS Rae~!!!

Are you presently employed? And if you are, do you have disability benefits?
Here you can call if not able to go into a Social Security office. I was just inquiring about my widow's benefit..when the lady did the whole application over the phone. THEN someone called me back with more needed information. I knew when I was going to receive the call, so I could have names, numbers/fax numbers help alot, and hospitalizations, with dates of visits/hospitalizaions, meds. etc. HAVE all that ready either if you go in person or on the phone.. or do it online.

Afterwards they MAILED me the long long forms about my condition (s) and how its affecting my daily life and work. That way I had time to complete the forms and take breaks if needed. They had a whole section on seizures..and.. someone who knows you the best fills out what they've witnessed.

REMEMBER BAD = GOOD in getting assistance. DON"T minimize anything. Tell them how much your life is affected by this. Tell them how you cannot work and why.

BUT now, since I am now on LTD or Long term disability from work, the insurance that is paying me my benefits (monies) has contracted with a company named Allsup. This rep goes after my records and speeds up the whole process.

Now you are young, so they will may deny you, if like here, the first time. EVERY ONE seems to get denied unless you have a terminal injury or are obviously permanently disabled. So ANY illness/disorder that can be treated with meds.. and you are young often gets denied. BUT that doesnt mean it will get denied for you. I dont know how open and liberal they are as far as making the decision in your behalf. Here, there are soo many needing disability monies (often not very much.. or you have to have already put into the soc security system to gain moones back).

Keep in touch..I am here for you my dear. I hope you get assistance from someone else in Canada who went through it.

Take good care..bring your worries here~

Warmly, Jan
 
How're you feeling Rae?

Sorry I'm not entirely in the loop lately - med increase and I aren't quite getting along these days.
 
After all that you have been through- they are going to be saying that to you? WTF too!

You might be better off going to a specialty Epilepsy Unit or Center where they can deal with more serious Epilepsy conditions.
I have heard of people having both real and psuedo-seizures but usually they better have damn good reasoning behind that diagnosis..
I have a friend who is faking and I mean for real. He was in ICU and everything and doped up on all kinds of seizure meds and he was diagnosed with pseudo-seizures since he was "in total control over his body" as the ER/neuro nurse told us. He reeked of meds and they basically where trying to get him to physically stop by drugging him up.. insane crap.
He would have a seizure-like episode everytime we came into the room. The nurses didn't come after a while. He would have 20 of these a day!
They were in no way real- but that takes a lot of time and patients and testing to find this out.

Please take care, rest and relax and let us know how things are..
I really hope that you are treated better than you have been.

Crystal
 
Crystal11 said:
I have a friend who is faking and I mean for real. He was in ICU and everything and doped up on all kinds of seizure meds and he was diagnosed with pseudo-seizures since he was "in total control over his body" as the ER/neuro nurse told us. He reeked of meds and they basically where trying to get him to physically stop by drugging him up.. insane crap.
He would have a seizure-like episode everytime we came into the room. The nurses didn't come after a while. He would have 20 of these a day!
They were in no way real- but that takes a lot of time and patients and testing to find this out.

Please take care, rest and relax and let us know how things are..
I really hope that you are treated better than you have been.
Click to expand...

Crystal, I have both epilepsy and NEAD (that is the correct term.) I have been accused of faking them. I am not!! The way to find out is to have a V-EEG. I am going to ask my neurologist to have one the next time I see him.

Most people who have NEAD (Non Epileptic Attack Disorder) are accused of faking them. This is an insult!!

The fact that I have epilepsy was taken off of my records at the ER room. They told me that I do not even have epilepsy. I have been diagnosed with epilepsy at the age of six. I am treated like scum at the ER now.

Rae, I know you are not faking it. Please take care and rest.
 
But Ruth, when they took you off your AEDs, you seized and they were going to scrap the colonoscopy. It wasn't until they figured out how to give you your meds that you stopped and they could go on with the procedure. HOW could that be NEADS???
 
That was not NEAD. They thought it was. They did not give me enough meds to stop my seizures. I had seizures during the colonoscopy. They were not going to scrap the colonoscopy. It was my choice to go through with it. They left it up to me to make the descion.

The hospital took out of their computer that I have epilepsy. I am going to have to talk to my neurologist and GP about it and get a V-EEG to prove that I have epilepsy. I have had epilepsy since I was 6 years old. I have proof from other doctors that I have epilepsy. I might have to go get my records to give to the hospital here.

Rae, I am glad that you are going to be all right. Take it easy. You need your rest.
 
Hi, Thanks again everyone. just wanted to say that this means so much to me that all of you cared to post. it means alot that Chris knew I would have wanted you all to know. I just found out today, from making chad do a play by play, that I had a tonic clonic in front of Chris and his wife while they visited me. 6 minutes long. and the drugs had me right back up a few minutes later talking to them. I wanna say sorry to them both. Its not something I wanted them to see do because they already live with it.
 
So I'll do a play by play for you guys. I dont remember a darn thing. and even yesterday is hazy. my brain and my body still feel off.

It started on Sunday. I woke up with a headache after being at the beach all day saturday. I knew I wasnt drinking enough there and that I was spending too much time in the water and therefore being unprotected from the sun. I had a longer complex partial saturday night just before bed and that is the last thing that I remember. dont remember going to sleep, but just the beach. Which was July 3rd, is the last full day I remember, and it scares me because I dont even remember yesterday all that well. Chad said he told me what happened a few times already, but I dont remember anyone telling me.

So I woke up sunday and made some food. a little unhealthy than usual, but still gluten free. *which btw, they did not pay attention to in the hospital* I had a major headache and took 2 200mg advil and tried to nap a bit. then it didnt help so a few hours later chad made me take more. He said at this point I was in so much pain about the headache I could barely stand. he took me to bed and I cried for a bit, but kept telling him it was pressure in my head. amzing amounts of pressure and not a throbbing like a headache normally is. it was all over and I was begging him to knock me out.

Then the first seizure happened. a longer one about 4.5 mins long. then I slept for about an hour. then when I started into a second seizure, chad said it looked like as I was slowing down, a third had started again. so he took me in. I wasnt talking. very spacey and the words I did say were not making sense. Linsey met us at the hospital and kept chad company as I went in and out of small complex partials, the whole time he kept telling the docs and nurses that I was having them. They didnt do anything. He said they gave me something for the migraine thinking that it would help the seizures if they cured something that was putting me in distress. But they didnt check me out to see what was causeing the pressure.

Then another tonic clonic started. Just after linsey had left. They gave me 2ml of Ativan at the 3 min mark and i still kept on until the 5 min mark. Then I stopped. Chad drove Cory *kaitlynns bf* home and then came back and I had another 5 min one. the nurses left for not even 2 minutes and I started into another. Chad yelled at kaitlynn to get the nurse again because this one seemed different as I was already blue 10 seconds into it. instead of 30s-1 min in.

they gave me more ativan and the seizure stopped at the 10 minute mark. They all left the room and I started again. So chad was letting them do their work and he over heard "she already had 8mls of Ativan, do you wanna give her more. Yeah give her 2mls more" I dont know how much Ativan that is, but I'm assuming thats alot. They kicked chad out when I was still seizing strong at the ten minute mark. no signs of slowing or stopping.

While he was out they told him to sit in the waiting room because they will be a while. Whiped the curtain closed and just let him and Kaitlynn stand their freaking out. They later said that that seizure took them 14mins to stop. and I clarifyed with chad that it was 14mins after they kicked him out. That means a 24min tonic clonic. I had nearly died on them. had my heart rate down to about 15bpm in the middle of a tonic clonic. and I had quit breathing on my own.

They let chad come in and see me when they were done. He said that they told him what they had done to me and he thought he was ready to see me but he couldnt look at me. Said they had a tube down my throat and that they had a nurse sitting beside me squeezing a bag to keep me breathing. I was still pale and blue looking and general terrible. He said he needed to leave. So they put him and Kaitlynn in the family room and brought in a grief councillor for them to talk to.
 
Rae1889 said:
I cried for a bit, but kept telling him it was pressure in my head. amzing amounts of pressure and not a throbbing like a headache normally is.
Click to expand...

A neurologist once told me to be aware that if a headache was a constant pressure rather than a throbbing it was a neurological headache.

Glad you're at least better, even if not in perfect health yet.
 
They said they were transfering me to the ICU at another hospital and that they werent sure what I would be like IF i woke up. they said it was unlikely. Chad had to cry for a while after he said this. Said it broke his heart into a million sharp peices to see me like that and he wasnt sure if he would be strong enough to stay at my side. But he knew I needed him and said he just knew I would come back to him. because I was strong. and he knew we were meant to be together forever. and forever couldnt end at that moment.

So they transferred me. Kaitlynn and Chad stopped at home to feed the cats and change and eat. it was really late at night. or early morning he cant remember. but they came to the second hospital and I was on the respirator and had 2 tubes down my throat. one for in and one for out and a suction thing. all taped down. They told them to go home because I would be out all night and they would take off the sedative in the morning and see IF i woke up. they went home and chad said they both cried to sleep. They didnt give me a good outlook.

They took the sedative off at 9am on the monday and it took me until tuesday morning at that time to open my eyes. Chad said by the time he walked in I was awake and scared out of my wits. didnt know who I was, where I was but he did say that I calmed right down when he came in. That I must have known somehow who he was. I couldnt move. had some paralysis and was completely loopy and irrational. no memory of what had happened. and was crying lots. he had to explain to me over and over everything. He cried alot too he said. He was afraid I would be like that forever.

They gave me Hepburn(?) shots, which are a blood thinner, because I was in bed and couldnt move and they were worried about blood clots. When I could move my feet they got me to stand and I fainted because I had been lying down for so long. Chad said while I was alseep after the sedative was taken off, they did a quick 10min EEG just to see if I had any brain activity at all. But I had some. I was in a coma though, but woke up way later.

I was loopy for very long time until I started remembering people and yet still couldnt remember who I had just seen or what I had eaten last. Just very sporadic with my moods and when I would have a moment of talking gibberish and a moment of speaking sentences that didnt make sense. I had moments of complete lucidness chad said and he saw my spark there and he said it was the only thing that kept him there. Because he said he wasnt strong enough to stay with me if I would never return to my old self.

They were giving me 500mg of valporic acid twice a day. I had only found out last week that my levels were so high. in the toxic range which is why I was having double vision and hallucinations and suicidal thoughts. normal is anywere between 50 and 90. I was 70 the first day. and 129 the second. I was 202 on the sunday I left and they still told me to keep taking it. They tried to make me sign a contract all loopy promising to take it but my mum said no, that I had no idea what I was agreeing to in that state of mind.

I vaguely remember being left on the floor. just a small flash of being near the foot of my bed and the nurse saying 'quit faking" and thats it. my mum said I complained about her the whole time asking not to have her back because she was mean and said I was faking and left me on the floor. I have one small flash of seeing jacquie *chads sister* there. just remember seeing her smile. I remember seeing chris with Jen on the sunday I got to go home. I should not have gone home. but I wasnt in my right mind and was mad to stay there when everyone else had to leave and was semi lucid at this point. I remmber the doc just said that as long as I could walk he couldnt force me to stay. so I walked. have no idea how straight or wobbly I was but I remember doing it. its hazy, but I dont actually rememeber anyone leaving or me leaving. nothing. dont remember getting home. dont remember the monday that followed. was back in the hospital in and out that week cuz I would quit breathing on chad after seizures. so I had so many tubes down my throat.

I feel terrible. but better than I have I guess. I just am lucky that I can type. I am looking forward to work on monday. I was shouting for a guy I work with to visit me. his name is Lloyd and nobody had any clue who I was yelling for. because they never heard me talk about him.

I have been told I have to eat every 2 hours and keep my fluids up. Im not sure why. but I am doing all I can to avoid a repeat of everything. my last day in the hospital was friday at 3pm. got home for 4:30pm and the hosptial had lost my shirt so I had to wear the gown home, because they brought me in by amulance and had to cut it off because they had a tuby thing in my mouth/throat and a bag to make me breath in the amulance.

Im tired and sore and want to be better. so much better. Im scaring alot of people and myself. I am mad that they told me I had pseudo-seizures. and yet also in a way, glad that I was brought in by ambulance 3 more time last week because it proved to them that they arent pseudo. The only reason they said it was pseudo is because I maintained my oxgen levels during some seizures and some I was up almost 10 minutes later talking and chatting. I hadnt bitten my tongue * i dont do it often anyway, my teeth are spread far apart and its actually hard for me to bite my tongue when I try. I bite my cheeks more often.* and that I had nothing on the EEGs the other 2 times they did them in the ICU. I had a seizure *complex partial* within the first 10mins of the first EEG. and was rubbing my head and some leads came off. then the second one I had a tonic clonic even before he was finished putting them on. so I couldnt do the tests.

They still havent called me for my 48 hour V-EEG and they still havent called me about my ambulatory EEG. I was told I would have had all these by this time. but nothing yet. The last time I was in the hospital the docs wouldnt give me anything for the pain in my sternum *paradmedics did a sternum rub to check my awakefullness and the one paramedic yelled at me to stop faking because they *the hospital who took the call* told her I had fake seizures and that I need to stop being a "c word" and open my eyes. She then proceeded to, in chads words, bounce me up and down on the stretcher by my sternum. They did a chest xray and she severely bruised it and caused a small hairline fracture. They pressed charges on my behalf right then and there.

My veins hurt. I have no more left for IVs in my arms. too much scar tissue and they are too thing are weak to use. so the last one I had was in my foot and the nurse was mean and flushed it really fast and had me scream bloody murder 3 times. *she flushed it because I had a seizure and disconencted the line from the port and had blood in the line*
 
Hi Rae,

It is good to hear from you!! You sound better, but you had better rest. I was in a coma with seizures in 1979. I did not have any veins left when it was over, either. I know how you feel. Your veins will come back, mine did.

I cannot believe that they thought you had pseudo seizures. I am glad that they proved that it is epilepsy. They should not have had to prove it. Everyone here knows that you have epilepsy.
 
OMG RAE!!! What a testiment you are to the human race..and your sainted Chad..WOW!!!

But I am saddened and upset with how you were treated and all. Its a MIRACLE that you survived and are here to talk to us. Know that I checked everyday for any information..anything about you!!

I am glad they pressed charges for this so called paramedic.

Hope you continue to heal..and have a good doc who understands how to treat you well.

HUGS Rae,

Jan
 
Rae, it's just so distressing to read what a hell you've been through. It's as if the hospitals you were in had never heard of epilepsy before. If I could, I would fly you somewhere where you could get expert care and treatment. We've got decent neurology centers here -- if I win the lottery I'll send my private jet to pick you and Chad up.

BTW, I think the blood thinner they gave you was Heparin, but I like Hepburn better...
 
lol heparin would sound better. I couldnt remember the name but it reminded me of Audrey Hepburn so I called it that. lol

The docs never heard of myoclonics or complex partials. they knew "the burning smell" was an aura but couldnt tell that I was having them when I mentioned things to chad he would tell them I was having a seizure. and they would be like "how do you know" he said they question every single one that didnt look like a grand mal. and I started head dropping too and he said that was a form. I used to do that in school. They said I was tired and "rubber necking it"

why is it so hard for them to tell? I mean i am sure that they had a course on seizures, but my friend who had a huge course in disability and support work had a full section and chapter on seizures. she knows about non-convulsive status and always starts to be a hawk when I have had a few absences around her. she always counts them. one time she had a napkin with tick marks and the time she started counting. she told me I should go in to the ER but I of course said no, cuz they would have no idea what is happening.

I have never felt so let down by our health care system. They paged Dr Fast one day while I was bawling from 9am to noon about 60 times they said. phoned his home, his cell, his pager, his office, his on call number, his hospital staff. everything, but he did not return their calls. he has no email and he came in to give chad his CONDOLENCES! when I was in the ICU and under sedation. he didnt prescribe me anything. he let his intern do everything. I had newbie docs and training docs and nurses and everything Chad said.

When he asked why he said its the best place for them to train because the patients dont/cant complain. Most cant feel pain she said. So this is how we train our medical personel! with people who are brain dead. "Here Sally, try putting an IV in this man. Dont worry if you screw up, he cant feel it anyway" WT*!!!!!!!!!!!!!!

I get these bouts of pure rage lately. just hating the world and how things are but I cant change anything. Nobody believed my seizures were real until I kept going into respiratory arrest. How can I make our laughable politicians do anything?
 
I honestly think you should gather all the facts of how you were treated, mark them down with how to get ahold of you & send a complaint to the provincial college of physicians & surgeons with a CC to the federal college of physicians and surgeons & the hospital administration.

Be specific and factual. Don't let emotions determine what you write. That'd be the best way to get results.

Too often people get away with this sort of behaviour because family are too busy looking after their sick relative.

Also.... now I'll never be able to hear the word Heparin without smiling.:)
 
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