A Hamster's Tale : My VEEG Journal

[AlohaBird]

There have been several threads recently about people's VEEG experiences. Some of them have sounded really horrific and some just bit muddled. Tempers flared, the details got lost, and not much got accomplished too often.

This kind of test is meant to be a stressful situation. It is meant to do exactly what we are always trying not to do, to provoke a seizure and record it both by video and by EEG simultaneously. And it is done in a confined space with not much privacy and, I would think, a huge boredom factor.

It would be easy for things to wander under those circumstances.

So, I've decided to keep a journal of my upcoming VEEG experience in an attempt to be able to sort things out, make sure I don't forget things, and perhaps be able to help the next person better prepare for theirs.


So, I had a neuro appointment a week ago today and was called yesterday to come in this coming Monday for my VEEG. This doesn't give me much time to prepare but I think I'll be OK.

Today is V minus 3 days and counting.
Last night I (under doctor's instructions) cut my phenobarbitol dose by 25%.


Today is my day for making lists and taking care of "the home front".

 

[AlohaBird]

My first "home front" concern was of course my puppy dog. A dear friend of mine has agreed to pack a bag and basically move into my house for however long I am gone.

I was told by the doc that it could be anywhere from 3 days to a week.

It's hard to arrange for professional pet or house sitting if you can't tell them when you are going to be back.

But for my friend, it makes no difference if he is at his house or mine since they are about five minutes down the road apart. He will go to work during the day and come home here in the evenings to have his dinner and sleep. He runs a tour bus company here on Molokai taking tourists around for a day trip when they come over on the ferry from Maui.

I think being in the yard during the day will be fine for my dog, there's plenty of room for him to run around, but it will give him a sense of stability to have someone he knows come home in the evenings and re-assure him that he has not been abandoned.

 

[AlohaBird]

Thanks, Bidwell.

These are the things nobody tells you about. Those little human details like getting to the bathroom. That sounds rather creepy to have Big Brother (however sweet voiced) tell you to get back in bed but I suppose they just don't want you hurting yourself.

Well, I don't really figure this is going to be anything resembling comfortable. They told me that they do insert an IV port and just tape it down in case it is needed later and you are thrashing around to much to get one in. Then there are the wires glued to your head.
I doubt I'm going to be able to sleep even if I tried.

I do figure that there is a good chance that I will get progressively less compus mentis as the test goes on. I am hoping this journal can be a reality tether for me.

 

[AlohaBird]

The other "home front" factor I took care of today is my actual house. I have a yard and general maintenance guy who comes in a couple of times a week. So I got him all pre paid with a list of the jobs that need to get done.

Turns out that he and the guy who is going to be sleeping here are old pals. Everybody knows each other here.

So I will have one of them here during the day for about half the days and the other here for the nights. Pretty well covered.

Another thing the maintenance guy and I got taken care of today was getting a lock put on my garage side door and getting the rolling door fixed. I have bought a bunch of tools recently and he is concerned that they could be stolen. He said that nobody would steal a computer here because you would have to have internet access and know how to use it but power tools are like gold. Makes sense.

I have made sure my neighbors know I'll be gone and told them who will be around. I wouldn't want the police to get called by mistake.

For people preparing for a VEEG, it would be a lot easier if you had family around to take care of all of these things for you. Those of us who are single are grateful for good friends and good neighbors.

It will be easier to keep my head focused on what I need to do at the hospital if I am not worrying about things at home.

 

[Bidwell]

It is true that the electrodes and the glue aren't comfortable and as time goes on there is a temptation to itch -- with a pen, for instance. Every day the technician comes along and renews the glue, which is generally a good thing. I sort of enjoyed watching my brain waves on the EEG monitor chugging along, especially in the night and especially when I sneezed.

I always felt embarrassed when I pressed the buzzer to announce My Events.My Events are t-i-n-y events, some of them so tiny I would just as soon not notice them at all. Anyway, I would press the buzzer and the loud mouthed NURSES would come roaring in. WHAT'S HAPPENING? Alert. Eager. Ready for anything. The first day the nurses had to sort out which events they wanted me to press the buzzer for and which events could go without response. [My legs were jerking very often.The nurses weren't interested in that.] Until that was sorted out, it really was a madhouse.
I have had two VEEGs. One at a swanky hospital and another at the regional epilepsy center -- not at all swanky. I had my own room in the swanky hospital and I shared a room in the other one. Basically it was the same in both. The regional epilepsy center was shabbier but the people who worked there were, I thought, very competent and compassionate and memorable. They were terrific.

 

[AlohaBird]

I have a tendency to scratch at things (e.g. bugbites) in my sleep. I hope I don't scratch the wires off.

The scientific aspect of the whole thing does intrigue me. I'm going to try to stay focused on that.
What happens to your brain waves when you sneeze?

I won't have the problem about sorting out which "events" are nurse worthy. Mine happen when I'm asleep and not capable of pushing any buttons. They will have to figure it out for themselves I guess.

From what I've heard, Queens Hospital is pretty swanky. We'll see. I'm pretty sure I do have my own room. I didn't think to ask.

 

[Bidwell]

When you sneeze, your brain waves JUMP.Takes a while to recompose themselves! Being able to watch my own brain waves, as ignorant as I am, on the EEG monitor within my sight -- THAT was memorable. I think being a neurologist and able to read an EEG must be a real thrill -- but not for me in this life!

 

[Bidwell]

About being bored
I have been thinking that you should not worry too much about being bored. The only day I was bored was the day I checked out, and that process took the WHOLE day, mostly sitting on the bed, waiting.
I did have an iPhone and a book the whole time I was there and I draw pretty much nonstop. That saves me from boredom a lot. Still I would not worry about being bored. Did not take the laptop out of the suitcase. I was all the time having to find something lost in the bedsheets or I had to go to the bathroom -- ALL THE TIME because I drank so much water AND THAT IS A BIG PRODUCTION NUMBER since someone has to go with you -- and you have a line trailing along after you. If you drink all that coffee, the bathroom is next! You say to the air, "May I go to the bathroom," and someone eventually turns up to be there while you go to the bathroom. Believe me, that took up a lot of time. The person looking down from above [and stationed in another room] would pipe up to tell me to get back in bed if I put one foot on the floor. That's a strange thing -- a voice on the ceiling telling you to get back in bed. It was a sweet voice!
I think about all these drugs making their unusual journeys through you [along with the possible seizures resulting from their unusual journeys] -- I am thinking you might not be comfortable. Maybe you should internally prepare yourself for that. Good thing you don't have a Cpap machine. They haul in the respiratory therapist to position the mask over the electrodes and ohmygod, that was somewhat entertaining and it did take time.
I hope you are feeling pretty good now, in this preparatory phase. Hope you get to take a few hikes before you get on that plane!

My best,

 

[resaebiunne]

Hello AlohaBird, my (drunken) advice to you is this: Don't panic. You'll be fine, you'll live to see another day. A VEEG is not the end of the world. Stolen tools or otherwise.

Bring a phone with some good music and a Spotify or Pandora subscription and relax[b/]. You'll be fine.

 

[AlohaBird]

When you sneeze, your brain waves JUMP.Takes a while to recompose themselves! Being able to watch my own brain waves, as ignorant as I am, on the EEG monitor within my sight -- THAT was memorable. I think being a neurologist and able to read an EEG must be a real thrill -- but not for me in this life!

Really? How interesting. I wonder if they've ever hooked up eeg wires to people doing other things, eating, talking, having sex( Oooh that might be an interesting brain wave formation).

About being bored
I have been thinking that you should not worry too much about being bored. The only day I was bored was the day I checked out, and that process took the WHOLE day, mostly sitting on the bed, waiting.
I did have an iPhone and a book the whole time I was there and I draw pretty much nonstop. That saves me from boredom a lot. Still I would not worry about being bored. Did not take the laptop out of the suitcase. I was all the time having to find something lost in the bedsheets or I had to go to the bathroom -- ALL THE TIME because I drank so much water AND THAT IS A BIG PRODUCTION NUMBER since someone has to go with you -- and you have a line trailing along after you. If you drink all that coffee, the bathroom is next! You say to the air, "May I go to the bathroom," and someone eventually turns up to be there while you go to the bathroom. Believe me, that took up a lot of time. The person looking down from above [and stationed in another room] would pipe up to tell me to get back in bed if I put one foot on the floor. That's a strange thing -- a voice on the ceiling telling you to get back in bed. It was a sweet voice!
I think about all these drugs making their unusual journeys through you [along with the possible seizures resulting from their unusual journeys] -- I am thinking you might not be comfortable. Maybe you should internally prepare yourself for that. Good thing you don't have a Cpap machine. They haul in the respiratory therapist to position the mask over the electrodes and ohmygod, that was somewhat entertaining and it did take time.
I hope you are feeling pretty good now, in this preparatory phase. Hope you get to take a few hikes before you get on that plane!

My best,

Thank you, yes, I'm feeling well and healthy now. It was raining most of the day so we didn't get a hike in but it would be nice to see the woods before seeing nothing but interior for a week. Good idea.

As if the eeg leads weren't complicated enough, adding a Cpap machine would really make things entangled. Yikes.

 

[AlohaBird]

Hello AlohaBird, my (drunken) advice to you is this: Don't panic. You'll be fine, you'll live to see another day. A VEEG is not the end of the world. Stolen tools or otherwise.

Bring a phone with some good music and a Spotify or Pandora subscription and relax[b/]. You'll be fine.

Hiya R.
Not panic. Just trying to be prepared. I've got an Ipod with 18 days worth of music on it. That should definitely go on the packing list.

Hey, how 'bout if you sneak me in a drink? I'm thinking tequila shots would be fun.

 

[AlohaBird]

So today, V minus 2 days is my day for lists and house cleaning.

Normally I wouldn't care about leaving the house dirty but my friend who is going to be housesitting is coming over for dinner tonight so he can see where I keep things like the dogfood etc. and I can't stand to have anybody see it this grungy. I think there may be the possibility that this friend could turn out to be more than a friend too. I know he's interested, I'm still making up my mind. So, I don't want him to think I'm a total slob (even if I am) and I don't want to leave him stuck in snowdrifts of dog fur for the next week.

So, avoiding cleaning for a little while by doing packing list:

Anti-boredome devices
Books +reading glasses
puzzles
2 back copies of Nat Geo I keep meaning to read
laptop + charger cable
ipod + earbuds

Clothing :
I was told that I could have hospital gowns if I wanted or bring my own clothes. I have been in enough hospital gowns to last a lifetime. Urg.
Pro tip from the lady scheduling the Veeg, hospitals are always over air conditioned, so bring some "warmies" sweaters, socks, etc. (Especially people from Hawaii who live in board shorts and flip flops tend to walk in and freeze their butts off.) I still have a few things like long pants and sweaters I keep for mainland visits.
All clothing has to be either something that comes off downwards or something that opens down the front. Nothing that you have to take off over your head because your head is going to be plugged in.
Also all clothing should be comfy for sitting or lying around because that is all you will be doing.

Personal care items such as toothbrush, hairbrush, shampoo for the last day when they take the leads off. (You don't get to take real showers or baths for the duration. You have to get by with sponge baths or what we used to call "camp baths")

Leave all jewelry at home as it would only get in the way.

Bring all meds IN THEIR BOTTLES. not just in a pillbox. The docs want to see the bottles.
Same thing with supplements. In the bottles. I may just leave those at home. No point in being healthy if I'm trying to provoke a seizure.

They said I could bring in any special food items I wanted for snacks but they will also have most anything available.


So if you're supposed to be doing things to trigger a seizure, how far would you go? I'm willing to pound down the coffee and sugar. Some junk food would be yummy. I could really get into a big plate of onion rings or some fried chicken. Oooh fish and chips used to be a favorite.
I think I draw the line at gluten though. A little bit of breading on some fried stuff wouldn't hurt me but I would rather not spend the whole week in the bathroom so no plates of pasta with garlic bread on the side. I never used to have huge GI problems from gluten but it has been so long since I've been off it (7 years) that I'm not sure my insides would forgive me for that.
(And given that you have to ask for help every time you want to use the restroom, that could also be very inconvenient.)

 

[Bidwell]

My take is not to leave the supplements at home. At the hospital they take away the bottles and what is in the bottles and they deliver your daily meds using the information from those bottles as they themselves comprehend it. They do not trust to second hand information about what is in the bottles! [O lord, this seems like Alice in Wonderland, but I think I speak the truth when I tell you they want the bottle and what is in the bottle for every single supplement.] Also the reason they want you to have clothing that opens in the front is so that when/if you are seizing, they can easily get at the electrodes that are on your chest.
Your situation must be very different from mine. Nobody was enticing me with FOOD.
It is great that you are cleaning up the house because when you get back home, it will be such a joy to have a just-right place to be!

 

[AlohaBird]

And with a man waiting for me too. Heheheh.

We'll see how enticing the food ends up being. They said they have a menu and you can order off that and that they are happy to accommodate things like gluten free diets.

My housesitting friend is coming over for dinner tonight and we are having rib eyes. Yumm.

It's really hot right now. The prospect of a few days in air conditioning actually sounds nice.

 

[AlohaBird]

Well Today is V minus 1 and I think I'm all ready.

Got my meds in the bottles packed plus printed out the hospital instructions (what floor, what time, etc.) Got everything in good hands on the home front.

I ended up packing one long black skirt and one pair of black silk pj pants plus assorted button front tops. I found a long loose dress with a button front that can sub as a nightgown (don't normally wear those but then I don't normally have a camera on me 24/7 either).

They will let me bring food but I decided to turn myself over to whatever they have. If it's junk, so much the better to try to provoke a seizure. Maybe I'll buy a bag of the chocolate covered macadamia nuts they sell at the airport. Yumm.

And I decided to leave the supplements home too. I just don't have room for all those bottles. (This is a little bitty inter island plane I'm going on and baggage is limited.)

Packed the laptop, some paperback mysteries, NatGeo, my ipod, some puzzles. And thanks to BIGMAN and his thread with a link to a free online Tetris game, I will have that to play with too. It might be an interesting measure of mental clarity, or lack thereof, if I get to the point where Tetris is beyond me.
http://www.coping-with-epilepsy.com/forums/f21/tetris-brain-25612/

Heading out early tomorrow morning and it's going to be a long day. Next stop, the hamster cage.

 

[Matthew74]

My advice is to embrace the fact that you have to do what they tell you, which is mostly stay in bed and call them for everything. Let them do their job. It doesn't matter if you know you will be safe standing up or whatever. It's just part of the deal. My first couple days I was resisting, but I was happier when I just gave in and let them do everything. You could be out mountain climbing the day before, but they assume you are going to have 20 T/Cs the day they admit you.

 

[AlohaBird]

My advice is to embrace the fact that you have to do what they tell you, which is mostly stay in bed and call them for everything. Let them do their job. It doesn't matter if you know you will be safe standing up or whatever. It's just part of the deal. My first couple days I was resisting, but I was happier when I just gave in and let them do everything. You could be out mountain climbing the day before, but they assume you are going to have 20 T/Cs the day they admit you.

That's very good advice. Thank you, Matthew.

Being anything other than self-sufficient is not something that comes easily to me but I will try to remember this and let them do their jobs.


I've been on 25% off the Rx of Pheno for 3 nights with no difference in how i feel or sleep. They said to step back to 50% off for tonight.

G'night.

 

[Nakamova]

Hope you have a good night's sleep. Maybe as a side benefit to all this, you'll get to revisit what your brain feels like with less pheno sloshing around in it.

 

[masterjen]

About being bored
I have been thinking that you should not worry too much about being bored. The only day I was bored was the day I checked out, and that process took the WHOLE day, mostly sitting on the bed, waiting.

Even when I wasn't doing anything I wasn't bored. My stay was in a neurology ward and my room door had to remain open. LOT"S of people watching to do, talking with various staff when they'd wander by, visitors coming to see other patients, and as I said I was on the neurology ward so the patients themselves who had freedom to get out and about the halls (or who got out and about even if not allowed lol) offered some entertainment and opened my eyes to some of the mysteries of the mind and brain.

 

[AlohaBird]

Hope you have a good night's sleep. Maybe as a side benefit to all this, you'll get to revisit what your brain feels like with less pheno sloshing around in it.

Yes, I can already feel it clearing. When I'm at the full Rx I function just fine but it feels like I'm experiencing the world though a cheesecloth mesh. Of the two meds I'm on, the doc is much more concerned with the pheno than the VpA in terms of long term side effects.

Even when I wasn't doing anything I wasn't bored. My stay was in a neurology ward and my room door had to remain open. LOT"S of people watching to do, talking with various staff when they'd wander by, visitors coming to see other patients, and as I said I was on the neurology ward so the patients themselves who had freedom to get out and about the halls (or who got out and about even if not allowed lol) offered some entertainment and opened my eyes to some of the mysteries of the mind and brain.

And you can't possibly get bored with someone coming in to monitor something at least every hour.
They said to try to get a good night's sleep tonight and the sleep deprivation part starts tomorrow night.
I've been experimenting with a little caffeine and sugar today. Coffee cart chai latte and cookies. Yumm.