I didn't know I was a fighter

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LJ-Bain

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Thanks for all the kind words and the support you guys gave while I was in the hospital. It helped me out as well as my husband!
I feel a bit beaten but we're going to carry on.
My specialist is on holidays but the epilepsy nurse still wants me to continue on the Keppra.
I don't have any memories from Sunday night, Monday or Tuesday.
Now I know what it feels like to wake up and not know where I am. I have memories of going to the hospital.
Apparently I fought being intubated which I find really amusing. I am a people pleaser and pretty mellow so I wish I could have seen that! I would laugh! I'm sure the ER staff weren't laughing. My throat is pretty roughed up from it. I can still only talk softly.
The EEG was clean but they always have been but they base their decisions on that. They are just calling them non epileptic seizures in their opinion. But even the hospital was giving me a script of Keppra with 4 repeats so I'm a bit confused. Neuro was bit hostile at the end but hey...I wanted out of there!
My favourite memory was getting giddy before my meds one night and dancing in front of the mirror while singing "Put the lime in the coconut and drink it all up...I said DOCTOR, ain't there nothing I can take!" complete with rock and roll stance...then thinking, oh geez I better go lie down. Fortunately I did not wake my roomate who had a stroke a week ago. She was snoring. Sweet lady. Another time too it was totally funny when my nurse was giving me my meds. Oh, is this my keppra, with a big smile? She said, you just had a seizure didn't you. I was like, oh? You can tell? She said, yeah, that magazine you're reading must not be making alot of sense and she was asking me to lie down like I was a 2 yr old. Sure enough. Whammo, I clustered.
I'm trying not to get my hopes up about what my specialist has to say.
The hospital has ordered me to see a psychiatrist. Sigh. I know it's not a bad thing. I saw one in the hospital and she said she often gets cases like mine when they can't figure things out neurologically they think it must be psychiatric and that if I do go then at least I will have a medical disclaimer stating it's not psychiatric.
Man oh man.
My life is certainly not boring.
Thanks again for the support. I don't know where we go from here.
More waiting I guess.
I don't know what to think.
Can't wait to see the kids tonight.
I think we should have ice cream for dinner.
Soooooooooo tired still. I guess I'll know more in a week I hope.
 
Welcome back! It's great to hear from you, we were really worried. I think other CWE members have had to put up with the psychiatric referral, only to get "cleared" and sent back to the neuro. It will be interesting to see if the Keppra helps with seizure control -- if it does, that will be another sign that your seizures are epileptic in origin. (If it doesn't that still doesn't rule out epilepsy).

You might want to have the hospital neurologist look at this link: http://www.epilepsymatters.com/english/faqdiagnosing.html#accurateeeg

This is also pretty interesting: http://professionals.epilepsy.com/page/e_b_psychogenic_pseudoseizures.html
It's a study of how neurologists and psychiatrists differ in their diagnosis of psychogenic seizures:
The results were statistically analyzed as a function of specialty. Significant differences in answers between neurologists and psychiatrists were found for two of the three questions. Neurologists thought that video-EEG monitoring accurately diagnosed pseudoseizures most of the time, whereas psychiatrists thought that this diagnostic method was accurate only some or none of the time. In response to the third question, neurologists answered that patients "fall through the cracks" due to their own psychopathology, whereas psychiatrists thought that doctors were "dropping the ball."
Click to expand...
 
I've only joined recently. Having dessert for dinner is always a joy,:agree: but waffle or pancake night, always goes over well.:pop:Breakfast for dinner. The kids had a hard time getting past this. now they have cereal any time of the day.
 
So glad to hear you're home, but sorry you had such a rough time and still no answers :(
 
LJ-Bain said:
My favourite memory was getting giddy before my meds one night and dancing in front of the mirror while singing "Put the lime in the coconut and drink it all up...I said DOCTOR, ain't there nothing I can take!" complete with rock and roll stance...
Click to expand...

Awesome! I really wished someone filmed that!!

I'm so glad your home from the hospital and back with your family! I'm so sorry you continue to be bounced back and forth between two professions. It must be so frustrating. Each is pointing fingers at each other saying, it’s your problem, you missed something. Hang in there!!!
 
im glad ur home and ice cream is a good idea for the kids and you with the throat thing and im sorry they had to do that and they seem to as of late just go by test results instead of listening to patient and witnesses of seizures.i have both and to be honest my wife who see's most of them says only difference she noticed is if its non epileptic she can use pressure points to pull me out sometimes by causing pain.:(
 
LJ___ so glad you are back at home, but oh my, so scary for you and your husband.
We all really appreciated him posting an update every day. Do you still take birth control pills?

Ice cream is always a good idea.. maybe chocolate sundaes would be a treat.

Take care.

Mary
 
Lol had to laugh, was eating ice cream when I read your post. Yummy!

So glad you made it out in good shape LJ, was excited to see your name back on. And that husband! Whew he's a keeper. So sweet to come on and keep everyone informed.
Best of luck with the doctors (and the keppra). Take care sweetie.
 
Welcome back LJ,

So good to see you back on her but sorry that they still don't have many answers.
I hope you get some answers soon.
 
hi justed wanted to wish you well and hope the ice cream goes down a treat x
 
Thanks again everyone! And thanks for taking care of my hubbie! He is a total sweetheart. I should say in a very manly way of course.
In the end my neighbours had cooked us dinner along with bringing a bouquet of flowers.
We are blessed.
Ice cream for lunch tomorrow perhaps? I have to fit it in somewhere!
Maybe I'll get some answers soon.
Wait, wait, wait is the name of the game.
You guys are awesome though.
 
Welcome Back! Im so sorry to hear about the hospital experience. I hope things get back on track for you and those doctors can give you answers! Dont stress about it... ( I know easier said than done). I did alot of stressing when my neurologist had referred me to the psych dr after my VEEG in march of 2011. It took some visits to finally have her realize what my neurologist thought were non epileptic seizures, were really epileltic seizures. Im hoping things turn out the same way with you! (Not that I want you to have seizures either way, I just want you to get the answers youre looking for! :) )

Anyways, rest up girly! Take it easy! :)
 
LJ-Bain said:
My favourite memory was getting giddy before my meds one night and dancing in front of the mirror while singing "Put the lime in the coconut and drink it all up...I said DOCTOR, ain't there nothing I can take!".
Click to expand...

what is that from?
there's something that's supposed to be good for - electrolytes or something
 
Oh my goodness. That song has always, and still will and in the future will make me laugh. Just try singing along. You can't help but smile.
Some people know it from the chick flick Practical Magic, but some people also know it from the movie Reservoir Dogs which was my first exposure to it.
But I do believe coconut water is good for potassium and minerals...but have you ever tasted it? It really does not taste that great. I'll stick to plain water with a slice of lime any time.
 
I read some info online that it helps morning sickness because the like curdles the coconut milk and that the song is about a hooker who can't or doesn't want to quit with the lecherousness
so it's kindof funny because it sounds like such a goofy song (no chordings outside of natural 7 whatever) but has quite a serious subject matter
damn you Harry Nilsson for being so brilliant!
 
there was some other sort of thing stuck in my head re: that song too though
a déjà or something maybe
but don't you hate it when those are so certain?
 
I didn't know that about the song being about a hooker?! Interesting.
I know what you mean about things being so certain...maybe you really do have a memory connected with it!
 
I swear to God a doctor was telling me about that song at some point - something to do with the hospital
 
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