going to seizure monitoring unit on Monday!

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 5/4/2007 8:07 PM (GMT -7)   
Hi all,
 
I know that there was another thread I started regarding a seizure monitoring session at the hospital. So many of you had fantastic advice for me!  I will be shopping for button up p.j.'s tomorrow! 
 
So I got the call today that I can get in on Monday.  I'm thrilled.  My simple partial, temporal lobes have become much more active and I'm noticing that I'm doing "new things" when I'm having a seizure.  My hubby can now tell when I'm having one, where as a few months ago, he had no idea when I was in the midst of a seizure.
 
I'll let you know what the outcome is.  Right now, I'm having 2 or 3 good sized seizures every day, so it shouldn't take long for them to compile the data they need. 
 
Just wanted to update you on the progress of all this.  Thanks again for all the great advice and information you gave me!
 
Blessings,
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 5/5/2007 1:04 PM (GMT -7)   

Hi Ginny,

Glad to hear of your appointment. Hopefully, this can be the start of a great improvement for you. Thanks for keeping us updated. I hope things go well.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 5/7/2007 4:26 PM (GMT -7)   
Hey Ginny,
 
It's Monday evening so you probably have a really nice new hair style with all the goop and wires.  After you master getting in and out of bed with all those wires, you'll be fine.  Hopefully, they will be able to capture your seizures soon and you will get to take a nice hot shower and get out of there.  Smile, they are watching you.  That part is a little hard to get used to.  This test is so worth going through.
 
Take care!
 
Carla

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 5/8/2007 12:13 PM (GMT -7)   
Well, I'm still at home.... I didn't get in.  I misunderstood the message that the nurse left me.  I wasn't able to get back to her right away, so she filled the bed with someone else.  We'll try next week. I"m next on the list anyway.  God is guiding me through this.  He has the best day and week planned for me to be there.  What is interesting is that I only had one small seizure yesterday and nothing today so far!  I guess this week wouldn't have been the best to do it!
 
Thank you for your encouragement Darren and Carla.  I really appreciate it.  I'll post again when I have some REAL news, hehe!!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 5/8/2007 3:37 PM (GMT -7)   
Sorry to hear about the mix-up, but maybe next week will be better.

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


SkyDancer
Regular Member


Date Joined Jan 2004
Total Posts : 103
   Posted 5/10/2007 1:44 PM (GMT -7)   
Thats a shame that there was a mix up. I had a 8 day in house monitoring a few months ago and it was the quietest naps that I haver ever had. Make sure that you take lots of snacks along with you because hospital food is awful. I took loads of magazines and lots of good snacks to pick from. It was boring but it really was good quiet time. Unfortunately, my room was right in front of the nurses station and they wouldnt allow me to close my door.. I finally got annoyed enough that I had to ask them to tone the noise down at night.. "people are sleeeeeeeeeeeping"...lol It was also kind of scary listening to people seizure for hours on end and wonder if they are ok.
Good Luck Ginny
IceDrop
IceDrop


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 5/10/2007 5:01 PM (GMT -7)   
I did my 4-day EEG at Vanderbilt University Hospital.  They let me keep my door closed as much as I wanted, so I didn't have any of the bad experiences you mentioned.  I guess the nurses got used to me saying not-so-nice words when I would pull some of my wires out almost every time I got out of bed.  It's kind of hard to pretend you didn't say it when you are being videod.  Oh, well.  They were always very nice about putting me back together.  So, Ginny, just know that whatever you do, it's o.k.
 
Carla

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 5/10/2007 6:54 PM (GMT -7)   
Awww, thank you guys.  I appreciate your encouragement and good advice.  I plan on taking ear plugs with me for sleeping!  I sleep with them at home and it's great. 
 
I don't know if I'll be going in on Monday or not.  Just have to wait to hear from the nurse.  This has been a relatively quiet week for my seizures, funny enough... Not the best week to have the monitoring done!  So God is presenting me with the best week to go in, I believe that 100%!
 
Yeah, being watched all the time will be odd... I'll have to be careful what I pick, scratch, or whatever!  Heehee!!! Yeah, gross, sorry!
 
Thanks again!
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


andrew50
Regular Member


Date Joined Dec 2004
Total Posts : 93
   Posted 5/11/2007 11:28 AM (GMT -7)   

Sorry to hear about the mix-up, Ginny. You seem to be taking it remarkably philosophically. My reaction in your situation would be to be rage about hospital inefficiency and generally get into a strop. Your approach is probably healthier, though mine has its good points too. Hope they actually fit you in next week.

They've probably already told you this, but if you're not having enough seizures they might reduce or even stop your meds to try and induce some. They did that to me when I had the scan a few weeks ago and wasn't putting on enough of a show initally. I promptly had what I affectionately call 'Super Seizure Wednesday'. Which wasn't much fun at the time, but meant they got all the data they needed and let me leave a day early.

I fully endorse Icedrop's remarks about stocking up on snacks and the awfulness of hospital food. Treacle sponge and thick custard, anyone? Hmmm, perhaps another day. I found being constantly watched surprisingly easy to forget about.  Though I did have constant urges to scratch, shall we say, my 'unmentionables' - even when they weren't itching.  I resisted, I assure you. I always resisted.

It's not a fun experience, Ginny. But it's bearable and definetely worth it. And it's a good excuse to chill out, catch up on your reading and watch dreadful daytime TV without feeling guilty about it.

Andrew

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