EEG Sleep study

[Heavy Kevy]

i'm on day four of being voluntarily stuck in this hospital bed. So many wires attached to me. They have been able to detect two seizures when i was sleeping. I also continue to have multiple "sub-clinical Bursts" during my stay. i'm recognizing the ding alarm that goes off in my room right before the nurse comes in to check on me. This is my second time doing this kind of testing. When i had it done 5 years ago they determined the seizures were on the left and right side. At the time it eliminated me from any kind of surgery that could help. I was happy they caught two rather quickly. Then i was told they would like to capture eight! Ugh!

 

[Bernard]

Do the nurses come into your room every few hours day and night to check vitals or whatever? Always thought it was crazy that hospitals do that when they are trying to test patients' sleep.

I hope they get good data for you.

 

[Heavy Kevy]

They sure do. They also ask a bunch of questions. The one that stumps me for a second is “point to the ceiling after pointing at the floor.”
I seem to be having these “bursts” just as I’m falling asleep. They come running in and asking if I’m okay.

 

[Porkette]

Hi Heavy Kevy,

Are you able to get up and walk around your room. I had a 25 ft. cable attached to me so I didn't have to stay in
bed and I could walk around the room and use the restroom on my own.
If you know of any foods or beverages that trigger seizures let your Dr. know that's what I did and they had me drinking
diet soda like crazy and then the seizures started up and I didn't have to stay in the hospital that long.
I wish you only the Best and May God Bless You,

Sue

 

[Heavy Kevy]

I’ve got a 30 foot cable. I do need to call for a nurse to get out of bed for any reason.
I’d like to have them pour me margaritas and see what happens

 

[Porkette]

Try some moonshine instead that will also keep the flu and covid away. My Grandma always had
a shot of it when she came down with a cold.

Sue

 

[Heavy Kevy]

I'm currently on 4 AED's. The one they started decreasing never felt like it hurt or helped. I imagine this is the safest way. Just not the fastest way.

 

[Porkette]

That's what they did to me also. I had to go off of at least 1 AED a week before I went in for the test and before
I went into the hospital they told me to stay up all night long with no sleep so it would trigger seizures.
I wish you the best of luck and May God Bless You!

Sue

 

[Heavy Kevy]

I was just informed they plan on keeping me awake until 3am and then no naps tomorrow. I was going to suggest the sleep deprivation anyway. Glad I’m on the same page as the Dr.

 

[Nakamova]

Sleep deprivation is no fun (I've done the overnight thing and then come in for my EEG), but at least you don't have to drive yourself home afterwards. Hope it's all worth it!

 

[Sabbo]

My neuro did a 48-hour EEG late last year, but at home. The results were available on our healthcare website, but I didn't understand them. I'll be seeing my neurologist in a couple of weeks, so he will be able to explain exactly what happened during it.

 

[Heavy Kevy]

Still here.
I’ve had multiple seizures and they are still lowering medication and waking me up.
Zero feedback on when I might get out of here. I’ve started apologizing to the wonderful nurses that are watching depression turn into anger.
I have neurologist’s checking in every morning. Any questions I’ve had they tell me they need to talk with the epilepsy team.
Stopped myself from asking if they need to know what floor the epilepsy department is!

 

[Jeanbean]

Still here.
I’ve had multiple seizures and they are still lowering medication and waking me up.
Zero feedback on when I might get out of here. I’ve started apologizing to the wonderful nurses that are watching depression turn into anger.
I have neurologist’s checking in every morning. Any questions I’ve had they tell me they need to talk with the epilepsy team.
Stopped myself from asking if they need to know what floor the epilepsy department is!

Hi there, I so feel for you as I went through the same thing at Chicago RUSH and the moods you experience are so difficult!!! Remember this is just a short time out of your life and it really is helpful. They wouldn't let me get out of bed without assistance and I was yelled at a few times for doing so because I wasn't thinking clearly. I wish you the best of luck and relaxation if possible. Do you have someone there with you or music etc? I just wanted to be alone because we do get so moody during seizure activity. I remember being very sarcastic and not so nice during mine!!! I hope you give yourself the grace of just being you during this testing. Much luck, Jeanne

 

[Heavy Kevy]

Thanks
I did get a Dr from the epilepsy team to stop in. They’ve captured 6 but want more. They are now saying I may be eligible for surgery. He was very positive about the test results gathered and how my different medications are affecting me.
Yes I have music, TV and family support.
Keep telling myself, Suck it up Buttercup!

 

[Pinkattitude]

Hi! Hope the mood is getting better. Messing with meds and sleep - hey! Don't they tell us not to do that?
When I had my week in the hospital, my husband and son - the geek squad - brought my desktop computer in so I could do all the things - social media, play my online games, email friends. Helped with boredom a bit.
There was maybe 10 feet from my bed to the toilet, and if I tried to get out of bed alone, they scolded me. Apparently, having the habit of tripping a lot makes hospital staff nervous. But 10 feet?
I think I could have managed that distance.
I'm glad you have family support, that makes a difference. It's also great that they are finding information that can be used - how the meds are affecting you in addition to the number of seizures.
Hope they gather more useful data!

 

[Sabbo]

Family support makes a lot of difference, as does having activities to keep you engaged. I always keep word puzzle books on hand so that I'm not constantly staring at screens.

 

[Heavy Kevy]

Woo Hoo!!!
11:30 discharge today!
They were able to determine all the activity was on the same side of the original tumor that was removed from 14 years ago.
They pushed me to the edge. Tuesday I wet the bed during a seizure. Yesterday morning I was sitting up in bed holding my legs rocking back and forth. Talking and cursing out loud, throwing pillows across the room. Almost tossed my food tray at the wall. Last night they put me back on my normal medication dosage. Sounds like there’s a good chance for another surgery that could help.
Looking forward to using the toilet (without the nurse asking if I’m ok every 20 seconds), shower, shave, a puff of thc, and taking my dog for a walk!!!!
Thanks everyone!

 

[Jeanbean]

Woo Hoo!!!
11:30 discharge today!
They were able to determine all the activity was on the same side of the original tumor that was removed from 14 years ago.
They pushed me to the edge. Tuesday I wet the bed during a seizure. Yesterday morning I was sitting up in bed holding my legs rocking back and forth. Talking and cursing out loud, throwing pillows across the room. Almost tossed my food tray at the wall. Last night they put me back on my normal medication dosage. Sounds like there’s a good chance for another surgery that could help.
Looking forward to using the toilet (without the nurse asking if I’m ok every 20 seconds), shower, shave, a puff of thc, and taking my dog for a walk!!!!
Thanks everyone!

Congratulations!!! Remember it takes time to get back to your normal level of meds if they are putting you back on the ones they decreased while you were there. I had difficulty with that and was still quite moody and felt really off for a a couple of weeks. It sounds like they obtained some good information. Your "behaviors" sound so normal for a irritated, seizure, brain!! Take it easy and catch up on your normal life. Jeanne

 

[Heavy Kevy]

“We aim above the mark to hit the mark.” — Ralph Waldo Emerson

 

[Nakamova]

Congrats on making it to the finish line! Give yourself many pats on the back.