6-Day Video EEG

Army Vet

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Well this is going to be fun. I have a technician coming over at 8:30 AM to put the wires on me. I won't be able to take a shower for 6 days! :eek: Plus they keep saying I'm not going to be allowed to scratch my head. 😱 That just makes me itch thinking about πŸ˜‚ Plus trying to sleep with all of that stuff... we'll see... Plus with it being on camera, I hope I don't do something weird that's not seizure related πŸ˜³πŸ˜‚ With the camera being on a tripod, they want me to stay in the room with it for 90+ percent of the time I'm wearing it so that if something does show up, they'll be able to see what I was doing.

Anyway, hopefully something productive comes out of it. If nothing shows up after going through 6 days of torture then I'll be disappointed πŸ˜‚

Wish me luck and feel free to tell me your experiences and tips etc.

Joe
 

CQ:)

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Good luck
Not scratching is the itchy head is the tough part πŸ™„.
Yep no showering sucks, I’ve only ever had my veeg in hospital so it’s always been sponge baths but the nurses would cover the screens and close my room while I was bathing.

My brain is tempermental, usually doesn’t seize when it’s supposed to. My 1st Veeg only a couple of auras, 2nd veeg 5 days before I had a tonic clonic then I finally started having the funny feelings we wanted. I think I was just exhausted.
 

Nakamova

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Good luck! What are they looking for with the vEEG -- do they want to find out how often you are having seizures or are they just trying to confirm an epilepsy diagnosis?
Should you be doing things to try and provoke a seizure? (such as not sleeping, or drinking a lot of caffeine, or whatever your triggers may be).
 

Army Vet

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It's just a "do your regular stuff, but stay where the camera is as much as possible" so they can see when and if I have one, what was I doing. I still have my VNS on and am taking my medications so it's not provoked (I would have to say). However, I don't know if I might be having them in my sleep, so that will be some new info in and of itself. If nothing comes of this then he'll send me to the hospital where it will be provoked (ie no meds; no VNS; sleep deprived etc). We're still trying to focus on where it's happening (in the brain) and what's possibly causing them and maybe then try other meds and whatnot as opposed to just "shooting in the dark."
 

Porkette

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Hi Army Vet,

I wish you the best of luck! The last time I had a veeg it was also a sleep study and they found out I was having seizures in my
sleep 1-2 hrs. before I woke up in the morning. If you notice you feel more tired than usual when you wake up this is what could
be going on with you but I hope I'm wrong.
My Dr. wanted me to have seizures during the veeg so they could pinpoint where the seizures were coming from, if you know
of any foods or beverages that may trigger seizures eat or drink some of them. I drank diet soda and of course the seizures started.
Once again I wish you only the best and May God Bless You!

Sue
 

Army Vet

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Thanks Sue.

Day 3 with this thing... IT ITCHES! 😱😱😱😱

Plus I'd really love to take a shower now πŸ˜‚πŸ˜­

Otherwise, it's going "decent." I haven't felt like I've had an episode (YET), but I'm VERY curious as to what is going on during my sleep... πŸ€” Surprisingly, I haven't slept too bad with this "purse" next to me on my bed, along with all of the wires... I thought it'd be a little harder. I still wakeup and toss and turn after about 4-5 hours in. MAYBE it's the seizures? πŸ€·πŸ»β€β™‚οΈ Again, I'll be curious. Not to be negative, but with me still on my meds and having my VNS still on, I'm not sure there will be any results πŸ˜• However, he already said that if nothing comes of this, I'll go to the hospital and they'll try to make one happen (ie induce one on me).

Oh and thank goodness for button up shirts πŸ˜‚πŸ˜‚

Feel free to laugh at my torture and/or comment 😭😭😭

πŸ˜πŸ˜‰
 

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When my wife had a VEEG done, she didn't appear to have any seizures. But the data they gathered still showed plenty of seizure like activity in the brain. Even if you don't have a full blown seizure, they could still be gathering useful data.
 

Jeanbean

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Joe,
Good luck and just think it will be over soon. Having meds taken away is really tough. I had that done in the hospital video eeg in Chicago and wow it took me a long time to recover so you are doing this the best way possible. My body was so used to the meds, when they were reduced, it really caused problems when I got home. In other words I felt terrible!! They did find a different med to use for me, depakote, which has controlled my seizures better. Good luck and hang in there. Jeanne
 

Army Vet

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Well some good news. My tech had to come one day early because it wasn't charging. However, she is coming back tomorrow and.... πŸ₯drumroll please πŸ₯ .... I’ll be able to take a shower! (Then another 3 days of torture πŸ˜‚ )

I’m relieved because I thought I wasn’t going to get to take a shower until Sunday! :eek: lol. I thought she was just going to check the equipment etc. I'll definitely be enjoying the shower tomorrow πŸ˜‚
 

Army Vet

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HALFTIME!!

So I made it through the first 3 days "okay." I was able to take a shower, but man, that glue and junk is HARD to get out πŸ˜‚ Plus I knew it was going right back on. I'm planning on just getting a new comb since I got all of that junk stuck in it. Then I had to blow-dry my hair. Not exactly what I do on a normal basis (ie the barber does it and that's it!). Funny because even after I "washed" my hair, it looked like I had dandruff πŸ˜³πŸ˜³πŸ˜‚

Then, how fun, it took twice as long this time because the girl (who did it the first time) brought along her trainee and she got some "hands on" experience. But she was nice and mostly did a good job. Gotta start somewhere. I saw it as doing my "good deed" for the day (ie being the guinea pig).
 

Porkette

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Hi Army Vet,

I'm glad to hear you made it through the 3 days. You may think it's crazy but one thing I used to do is take a toothbrush
and get the glue out of my hair that way scrubbing it back and forth. Just like you I still looked like I had dandruff for awhile.
I hope all goes well and they are able to pinpoint the area triggering seizures. Here's wishing you only the best and May God
Bless You!

Sue
 

Army Vet

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I THINK I might have had an episode last night. I was just starting to doze off when my right leg involuntarily kicked and shook. I also felt some tingling. I googled it this morning and I saw that it could be myoclonus, but it does relate somewhat with seizures (but maybe just a sleep disorder; however, we know bad sleep can cause seizures). Either way, I pushed the activity button to record it and wrote it down.
 
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CQ:)

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Hopefully once you finish the EEG will come back with some results, you may be surprised with what it picks up.
How ling do you have to wait until you see your neuro again for the results.
 

Army Vet

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IMG_3709.jpg
YESSSS!
AT LASSSTTTT!!!!

Dunno how familiar people are with the animated Disney movie "Aladdin" but this scene πŸ‘† popped into my head when it was OVER. πŸ˜‚

That was how I felt yesterday when the wires come off and I was able to "wash" my hair πŸ˜‚
It was definitely somewhat of a challenge to get the crap to wash out. She recommended "Dawn" (the dish soap) shampoo and conditioner and also baby oil 😯

I stuck with the Dawn, shampoo and conditioner and got fairly decent results. Now the fun part... seeing if anything comes from it.
 

CQ:)

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It was definitely somewhat of a challenge to get the crap to wash out. She recommended "Dawn" (the dish soap) shampoo and conditioner and also baby oil 😯
That post EEG/VEEG shower is usualy the best feeling to get the gunk out lol.
When I was having my brain surgery I met someone who had just brain surgery at the same hospital, she gave me some tips. One of her tips was was to use baby shampoo.

Good luck with the results.
 

Army Vet

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Status Report:

NOOOO! It came back β€œnormal!” 😭😫😭😫😭 🀧🀧🀧 I didn’t think I felt like I had anything going on while I went through that torturous 6 days... He said it all looked β€œgood” and that the new meds are "working." Funny, sounds like I'm disappointed about not having a seizure πŸ€ͺ But you guys know what I mean...

However, he would like to do a sleep study on me. So we’ll see what happens there. I haven’t rested decent in 2+ years (if not longer). That’s why I always answer the question when asked (by my parents) how did I sleep... β€œMeh...” I don’t really feel refreshed or anything. Who knows. Maybe these pills will work and I can also find something to help me sleep better. Again, we’ll see...

Another frustrating thing about seizures... they never come when you want 'em... πŸ€ͺπŸ˜πŸ˜‰
 

Porkette

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Hi Army Vet,

I'm sorry that the veeg didn't show anything but take my word when they do a sleep study they may find out more. When I had
my sleep study I had to stay awake the night before and then I went into the hospital where they did an e.e.g. and e.k.g. on me at the
same time for 24 hrs. I was also on camera. My Dr. found out that I was having seizures in my sleep about 1-2 hrs. before I would wake
up in the morning and then I was put on vimpat and those seizures ended thank goodness. I wish you the best of luck and May God
Bless You!

Sue
 

Army Vet

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Hi Sue,

Yeah, I forgot to tell the doc that I ~DID~ have a complex seizure when I was at the store last week. I was stressed (and tired) because it was 8:30 PM and it was the night before we took our 3.5 day "vacation" to the mountains. We weren't sure what was going to be available up there so my mom wanted to buy anything and EVERYTHING that she thought she might need. Of course this brought on the "million questions" game (ie do you think we'll need this? Do you think we'll need that? etc). She went to go get something and I "stayed" where I was. So I thought I did... my mom came back and I was walking around. She had to find me and I wasn't really "there" sorta speak. Go figure... FOUR days AFTER the EEG was done πŸ™„

I called the doctor's office back and left a message that I had forgotten to tell him (because I was VERY curious about the EEG). That, and my memory is just BAD anyway lol
 
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