Im all hooked up and ready to go!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

momof3boys

Account Closed
Inactive
Messages
2,284
Reaction score
0
Points
0
Im here to get the VEEG done!
We got to the hospital at around 9am, and was admited shortly after that.
I got into my room, and had my medications with me. I was going to take my morning medications at 10am, and then again at 10pm, so I told the nurse, I still had to take my mornings dosage. She said she would call the dr to see if he wanted me on them. Turns out he doesnt! So, Im off my medications!
Thats something that suprised me! I thought from the way the nurse at the drs office was speaking, was that they were going to give it a day or two. I guess not.


On the good side, is that they have 24 hour room service! So if Im up at 2am, I can get food to my room! I just had lunch, I had a cheese omlet with some bacon and a cheese cake cupcake. They gave me two orange juices, and it was pretty good!

I hate the fact that everytime I have to go pee, I have to call the nurses. Ive already gone pee 3 times! LOL

I have my IV in, and they put the things on my legs to keep the blood movin, so I dont get any blood clots.

TV wise, there really isnt that much channels here... maybe between 15 and 20? Only about 4 of them which I like.

They wrapped my head in gauze! LOL So I kind of look like a mummy! LOL

I hope when my kids come to visit me they dont get scared!

My husband is with your youngest at home, my dad brought me today, he works here in Omaha, so he went in late to work. My mom is scheduled to work tomorrow, but when she found out they took me off my medications, she is kind of freaking out. She was planning on coming tomorrow after work, but now she wants me to check with the nurse to see if they plan to keep me off my medications. From the way it sounds, thats what I would think they are going to do. I will have to check with one of the nurses when they come in.

Anyways, thats about all I have to report for now. Just sitting in my bed, checking emails, and watching tv.
 
Do you have a window in your room? Any decent views? How are you feeling?
 
Yeah I have a whole wall of windows. One pretty big one, and then two more on the side of it. Its all facing the other back buildings behind the hospital though. Not really the greatest view. Im on the 6th floor.

Im not feeling bad or anything, Just kind of tired. I didnt get alot of sleep last night, so just sitting here, is making me tired. Im thinking about taking a nap, thats if they let me. They didnt say anything about me having to stay up.
 
Yeeeehaw! Let the EEG begin!

I'm with you on the calling the nurse every time you have to get up. It's a royal pain. Especially if they don't come RIGHT AWAY. Most of the time they were there within 2-3 minutes, but sometimes not. I learned to call them a half hour before I really had to. And I really hated it that they hovered right outside the door. I understand the safety thing, but it didn't make it any less uncomfortable.

Cheesecake cupcake? Yum!!!!

Hey - have your hubbie bring a scarf for your head, okay? It not only made my visitors feel better, it made me feel better, too.

Off your meds... that is rough, or it can be. Please let us know how you are doing, okay?
 
Yeeeehaw! Let the EEG begin!

I'm with you on the calling the nurse every time you have to get up. It's a royal pain. Especially if they don't come RIGHT AWAY. Most of the time they were there within 2-3 minutes, but sometimes not. I learned to call them a half hour before I really had to. And I really hated it that they hovered right outside the door. I understand the safety thing, but it didn't make it any less uncomfortable.

Cheesecake cupcake? Yum!!!!

Hey - have your hubbie bring a scarf for your head, okay? It not only made my visitors feel better, it made me feel better, too.

Off your meds... that is rough, or it can be. Please let us know how you are doing, okay?

Yeah that having to call a nurse is a PITA! But I have some pretty nice nurses. All have been really nice and friendly! :) Yes, when I saw that cheese cake on the menu, I thought I had to have one of those! :roflmao: I couldnt eat all my omlet though, but it wasnt that bad of an omlet!



The Dr just stepped in and said Im going "Cold Turkey" without my meds! YIKES! My mom is freaking out! She's not here, she is home, but she wanted to update her when I heard more news.

He said today is a FREE PASS for me! I can relax and pretty much sleep, watch tv, etc. If no seizures occur today, he will then sleep deprive me tomorrow night. He said he will also be taking me off my carbotrol and putting me on a new medication, thats been out for a couple of years now. Vimpat, or somethign like that... I'll have to google it...
 
Last edited:
It's Vimpat. I take both with a Keppra kicker! I hope everything goes well. Do they have DVD players? A computer? Then you watch movies :) Thanks for keeping us updated :hello:
 
Free pass

The Dr just stepped in and said Im going "Cold Turkey" without my meds! YIKES! My mom is freaking out! She's not here, she is home, but she wanted to update her when I heard more news.

He said today is a FREE PASS for me! I can relax and pretty much sleep, watch tv, etc. If no seizures occur today, he will then sleep deprive me tomorrow night. He said he will also be taking me off my carbotrol and putting me on a new medication, thats been out for a couple of years now. Vimpat, or somethign like that... I'll have to google it...

Free pass? How do you usually feel when you miss doses? Potentially not a "free pass" day.
 
Free pass? How do you usually feel when you miss doses? Potentially not a "free pass" day.

I dont really know how I would feel if I miss a dose, because I cant recall ever missing a dose. Right now I really dont feel all that different. Not feeling like I would when I do before a seizure or such.

Now when I dont get enough sleep, then there are times I feel alittle "off". But other than that, Im feeling fine right now.
 
How old where you when you started meds?? I am sorry I don't post much so if I ask questions that people already know the answer too. Why are you having an EEG now? My son will have another EEG in December if he remains seizure free until then. If things look good then they will look at reducing his meds to attempt to come off of them. He is 8 and has had epilepsy for 5 years. Just kinda curious about your situation. I was wondering what to expect if my son remains on meds his entire life.
 
How old where you when you started meds?? I am sorry I don't post much so if I ask questions that people already know the answer too. Why are you having an EEG now? My son will have another EEG in December if he remains seizure free until then. If things look good then they will look at reducing his meds to attempt to come off of them. He is 8 and has had epilepsy for 5 years. Just kinda curious about your situation. I was wondering what to expect if my son remains on meds his entire life.

I was having seizures as an infant, but wasnt officially diagnosted with Epilepsy until I was 18 months old. Ive been on medication since then, I will be 30 yrs old in may, so for quite awhile now.

I've had the regular 45 minutes to an hour EEGs before. Many of those in my lifetime. But this is my first Video EEG. Once I got too old to be seeing my pediatric neurologist, we started seeing a neurologist in Omaha. This dr I am seeing recommended I have a Video EEG. When you'rfe being video'd and heard for a long period of time, and you have a seizure, they can get alot of information from that. Im on Carbotrol and have been for years now. Being on Carbotrol for a long period of time, can damage your liver, so my dr was wanting to see where my seizures stand, and to see if I was a candidate for surgery. From what I heard from him today, he wants to see how things go with this VEEG and also get me off carbotrol and into a differfent medication.

Im use to taking medications, I have my whole life basicly. If your son hasnt had a video EEG, then you could ask his dr about possibly getting one done. It may give you more information on what his dr can do for him.
 
Thank you for the insight. My son is on 300mg on Zonegran. It has damaging side effects to the kidneys and can pose an issue with sweating making him more likely to overheat. I am in Houston, TX so the heat and humidity play havoc on all of us here. Both of my son's EEG's and MRI's have been normal in the past. He has had both of them twice. How long have you been seizure free? My son has been seizure free for 19 months or so. Prior to that we had a little bit of an issue controlling them. But compared to some of the others here my son's haven't been quite as bad. He has gran mal seizures lasting just a couple minutes or less than a minute. They think his start partial and go full. Do your children have epilepsy? I am sorry to get so personal and if you don't want to post I completely respect that. No one in my family has a history of seizures, but my son has some other medical issues in addition to the epilepsy. How much do you explain to your kids?? I let my son see a seizure on TV. He was a little shocked, but understands how important it is for him to take his meds. He has them only in his sleep so I don't think he knows when he has had one. I read the stories of aura's and odd tastes in people’s mouths. What kind of surgery are they going to do?
 
The Dr just stepped in and said Im going "Cold Turkey" without my meds! YIKES! My mom is freaking out! She's not here, she is home, but she wanted to update her when I heard more news.

He said today is a FREE PASS for me! I can relax and pretty much sleep, watch tv, etc. If no seizures occur today, he will then sleep deprive me tomorrow night.

Then, let the seizures begin! More than likely you will start having seizures very soon since you're going "COLD TURKEY", without meds. If not, then the sleep deprivation should do it.

When I had mine done, I went "cold turkey" and the seizures started within 2 days. I was in for 10 days so they could record at least 3 seizures, and indeed they did.
 
Thank you for the insight. My son is on 300mg on Zonegran. It has damaging side effects to the kidneys and can pose an issue with sweating making him more likely to overheat. I am in Houston, TX so the heat and humidity play havoc on all of us here. Both of my son's EEG's and MRI's have been normal in the past. He has had both of them twice. How long have you been seizure free? My son has been seizure free for 19 months or so. Prior to that we had a little bit of an issue controlling them. But compared to some of the others here my son's haven't been quite as bad. He has gran mal seizures lasting just a couple minutes or less than a minute. They think his start partial and go full. Do your children have epilepsy? I am sorry to get so personal and if you don't want to post I completely respect that. No one in my family has a history of seizures, but my son has some other medical issues in addition to the epilepsy. How much do you explain to your kids?? I let my son see a seizure on TV. He was a little shocked, but understands how important it is for him to take his meds. He has them only in his sleep so I don't think he knows when he has had one. I read the stories of aura's and odd tastes in people’s mouths. What kind of surgery are they going to do?

Ive had break through seizures in October of last year when they increased my Keppra to 4000mgs a day. My dr at the the time I thought all the headaches I was having, was the start of seizures trying to start. After 5 weeks of being on that much, I was taken off and put on Keppra XR at 3000mgs a day. Since then I havnt had a seizure. My Last BIG seizure was in 2000, through out the years I would go a few years and have a small here and there. mostly due to lack of sleep.

No, My three children dont have epilepsy. I actually dont have any family members that I know of in my family who have epilepsy. Going by what the drs are saying, It could have happened when my mom was in labor with me, my heartbeat got down really low and stayed that way for awhile. I was born in 81, so the drs then really didnt think much of it. But the neuros that ive seen, said that very well could have been what started my epilepsy. My kids dont know alot of details, about my epilepsy. We just tell them that mommy has some head problems and since Im now in the hospital to get the video eeg done, they know Im here to get some tests done. They dont ask alot of questions forf their age. I dont know yet about surgery. For now, they will do the Video EEG and then see what the results are from that and go from there.
 
Then, let the seizures begin! More than likely you will start having seizures very soon since you're going "COLD TURKEY", without meds. If not, then the sleep deprivation should do it.

When I had mine done, I went "cold turkey" and the seizures started within 2 days. I was in for 10 days so they could record at least 3 seizures, and indeed they did.

As of now Ive missed 3 doses, about a day and a half without medication now. Last night I really was going back and fourth with sleeping. I started to feel alittle light headed and had some sharp pain in my left area of my head and would come and go at times. They gave me some tyenol for the pain, which took care of it for the most part, but so far ive been taking it easy. Just a waiting game at this point. My mom is with me now, she came up last night when she heard they cut me off my meds completely.
 
Wow. I'm so happy that you are only experiencing a few little effects from the withdrawal. I'm hoping the ride will be this easy all day, with maybe the exception of a seizure or two, so you can get the heck out of there!
 
Wow. I'm so happy that you are only experiencing a few little effects from the withdrawal. I'm hoping the ride will be this easy all day, with maybe the exception of a seizure or two, so you can get the heck out of there!

Yeah, so far Ive been feeling "ok"... alittle out of it, but its normal for not being on my meds. Im hoping I can get out of here soon too!
 
Back
Top Bottom