Questions About Video EEGs (or VEEGs)

[Lovespurple]

Hi everyone, I hope that you are all having a good day. :hugs:

I have recently read some threads regarding members' experiences of video EEGs.

I cannot remember how many EEGs I have had, but I know it's between 2 and 5. The idea of having a video EEG sounds good because I might have a better chance of a seizure (or two) being recorded. I would want at least a 2-day stay since my seizures mostly happen when waking up, at least that's what my mother told me ( I'm a student under the age of 18 ). Those EEGs were between 30 minutes and 1 hour. I live in London.

I have some questions:
1: Do you think that my neurologist will consider a video EEG for me?

2: If they do consider a video EEG, how long do you think they will keep me in the hospital for?

3: (This one is for those who have had a video EEG in England, preferably in London) If I do have to have a video EEG, will the hospital have anything to help me pass time? (e.g. Wi-Fi Internet, TV, etc)


Thank you very much for taking the time to read this. :e: :hello:

 

[Endless]

Hi, LovesPurple!

1. Maybe - it depends on the neurologist. Mine did a video EEG after about 2 regular eeg's with no positive results. I don't know the system in the UK and how it works, and if doctors have to run through some set diagnostic pathway or not there. In the U.S. it's "art," and completely up to the doctor. IMHO I think it'd be a good idea to have one.

2. The shortest stay I've heard of is 2 days. That was for someone who had a simple partial seizure within an hour of being wired up and had several after that. They got what they wanted, then had her stabilized back on meds and on the way home pretty quick. Most video EEG's last 3-5 days. Some as long as 7-10 but they are the exception.

3. Every hospital is different in what they have to offer. One hospital I was in had movies on demand, 100+ channels of cable TV, in-hospital video games you could play against patients in other rooms, and free high-speed Wi-Fi. Another I was in had a refrigerator in my room but no entertainment except a TV with basic cable. Not even any Wi-Fi, and I wasn't allowed to use my cell phone or other electronics. To know what the unit you'd be staying in has to offer, you'd have to call that specific unit and ask. Or ask the nurse who is scheduling you in. They might know.

Check out this thread:

http://www.coping-with-epilepsy.com/forums/f20/hello-im-new-here-21272/#post237800

 

[Lovespurple]

Endless, thank you very much! The information you gave me was useful, and the link to the thread was useful when it comes to what I could and/or should take to the hospital with me to help me pass the time.

Another question I have that doesn't only apply to long EEGs:
(continuing from above list of Q's)

4: I'm a Muslim, so I'm not allowed to eat pork and gelatine (as well as drink alcohol). If I do go for a video EEG, do you think that the hospital would make arrangements for me to eat halal ("permitted" in Arabic) meals (I guess there is a big number of Asian patients at the hospital)? Or would they just give me vegetarian meals? Also, would they allow me to have takeaway food?

I would be thankful to anyone who attempts to answer this question.

 

[Endless]

You'd need to ask your doctor about takeaway food, so he includes it in his orders. That way you can make SURE you can have it. You can also call the hospital dietician in advance and tell her your dietary restrictions. She'll know what they can and can't do. I'm a vegetarian and I was dying for protein other than raw tofu and a few garbanzo beans. Take out food was my go-to solution. The dietician said they'd do everything they could for me, including going out and buying stuff, but somehow that didn't work out.

 

[Lovespurple]

Thanks again, Endless. I'll keep this whole thread safe somewhere as a reference or something. About the food: I'm sure I could prepare, cook and store a meal (maybe lunch) in a food container the day before the video EEG and have the meal on the first day, because I think that if a VEEG is considered for me sometime, then it would most likely be 2 days long - hopefully. I don't think I would mind eating hospital food, though. As long as it isn't microwaved and given to me. Like you said, I'd have to check with my doctor and the hospital dietician.

I'm asking all these questions because I want to bring up the idea of a video EEG in my next appointment with my wonderful new neurologist. I think that she will understand me more because 1: She's the same gender as me; 2: She's a Muslim too, so she can understand why I feel guilty for not fasting in the holy month of Ramadan (medicine). If my new medicine change shows even slight improvement, I will bake some cupcakes and take them to our next meeting. I'm sure she'll be delighted!

 

[BrandiBrat]

Hi Lovespurple
Can you do a 72hr Ambulatory EEG? That way you can do it in your home and still hopefully capture your morning seizures. Just a thought...and an option to give to your neurologist, along with the veeg. Good luck!

 

[Lovespurple]

Hi BrandiBrat, thanks for posting in this thread. I hope that you are doing well today . I like your username. If you don't mind, I could sing "Brat, Brat, BrandiBrat/Brat, Brat, BrandiBrat/Brat, Brat, BrandiBrat/Brat, BrandiBrat!" all day long .

Could you please explain the concept of a 72-hour Ambulatory EEG? Is it still a Video EEG? Can I still move around during the Ambulatory EEG? How is the machine set up? I'm not sure if my hospital would be so advanced to have everything necessary for a video EEG, but I'm still curious. One benefit of an EEG at home would be that I can cook (sausage bites with noodles and stir-fried vegetables, yum!) and bake at will (cupcakes, yum!), so I wouldn't have to worry about my meals at the hospital.

However, an EEG at home may make me feel bored, to be honest. Everyone in my family would either be at work or doing their own thing at home. Hopefully, if I do the Video EEG, they don't put me in a room by myself. I'd like the idea of having my VEEG in a ward full of epilepsy patients .

Thank you for the idea, BrandiBrat. I'll make sure I ask my neurologist about having a Video EEG as well as asking about having an Ambulatory EEG. Have a nice day! :hugs:

 

[Lovespurple]

Actually, aren't Ambulatory EEGs mainly for those who experience auras? Don't they have to push a button whenever they feel that a seizure is coming? I don't have temporal lobe epilepsy, I have juvenile absence epilepsy. The cause of my epilepsy is unknown, but I suspect that the cause might be that I was born premature.

Thank you to everyone who has posted so far. Feel free to post more information that may be new to me. Carpe diem!

 

[BrandiBrat]

I love the song!!! You're so creative
When I wore my Amb EEG I did not have to push a button, although I do not know how they are manufactured in the UK for you. It was recorded automatically and I just carried it with me everywhere for 3 days/nights. My most bothersome seizures are primarily nocturnal so there's no way I would be able to push any buttons to notify it of a seizure.
I hope you had a seizure-free day today!!

 

[Lovespurple]

Hi BrandiBrat, thank you for the compliment on my "BrandiBrat" song!

I read on other threads that other members who have had Ambulatory EEGS had to push a button. That's why I mentioned it. I don't know myself how those things are made in the UK. I don't even know if my hospital can do a VEEG. They sent me to another famous hospital in London to get both of my EEGS done, so if they can do the video EEG, hopefully I don't have to go far.

Like I said in my 2nd last post, I might get bored at home because everyone in my family would be doing their own thing. Plus, I might like a new atmosphere and new setting. I have another question: 5: If I do get the Video EEG, my mother would have to be with me. Would she have to sleep in a chair (difficult for her because of her arthritis)? Or could the hospital make some arrangements? Thank you again in advance!

 

[BrandiBrat]

Yes, I'm with you...I say make it a social event. If it were me and I were young I'd try to make it as fun as humanly possible Here, the epilepsy clinic isolates each patient so it is very boring! lol In our hospital, they offer cots for family members to sleep on. Not quite as comfy as a bed but at least your mom would be able to lay flat and have an easier time for her back and neck. I hope it is the same there! I'm sure they would be able to make arrangements to bring in a cot for her.

 

[nelly]

Hi Lovespurple
I agree BrandiBrat try to have fun!
If you don't mind -I'd like to say a few words on my Video eeg experience.

this all took place in Minneapolis MN. Abbott Northwestern Hospital. Once I got hooked up. I wore a belt like around my waist batterback. didn't notice I had it on-pretty light weight. I was able to leave my room about 70 feet or so.. not really sure on the feet. but nice to get out of my room and be social with others in for the same thing. Best of all I was able to wear my own clothes. not a fan of the gowns with the open back. Family mambers were welcome and they also provide a hotel like room in the hospital. of course there was small charge for that service. I met some wonderful people. My family came to vist. I was in over Thankgiving weekend so my family brought in turkey dinner for me. :woot:
I had my seizure later that night. didn't press the button-was a little scared to-I should have been. The nurse was there in a flash! I was in there for 4 days.
Good luck and hope it turns out well !!
:hugs:

 

[CQ:)]

Lovespurple,

I have never had a Ambulutary EEG but did have a VEEG in November 2010 which I had done in Melbourne, Australia.
The neurology ward at the hospital where I had my VEEG had 3 monitoring rooms which were single rooms. The 1st room had it's own ensuite & the other 2 rooms had to share the bathroom/toilet (from what I can gather it was in between the 2 rooms).
My epilepsy nurse was able to arrange that I was put in the room with the ensuite .

At the hospital where I had my VEEG they preferred that the patient had a carer with them & someone who was familiar with the patients seizures. I had my Mum with me who is the most familiar with my seizures. I had to sit on a big chair which reclined out & wasn't aloud any thing to cover me (eg sheets & blankets) because the specialists wanted to see everything during the seizure & having something cover you could hide the seizure. My Mum had a chair to sit on during the day which folded out to a single bed at night.

Once I was all wired up I had like a bum bag on me which was kept on my waste and had all the connections to the wires in it. I had to stay in sight of the video camera & the only time I was only able to get up was to go to the toilet.

My main reason for me to have the VEEG was that it was part of my pre surgery tests to see if I was eligible for brain surgery. I found the days were really busy because I had people coming in though out the day to check on me & chat to me eg - drs, eeg techs, neurologists, epiologist, neuropsychologists, students etc.
My Mum & I had hired a TV for us to watch, we also took things to keep us busy eg - games, magazines, books, kindle.
I found the night times were the most boring & dragged because I was sleep depriving myself & I let my Mum get some sleep at night.

 

[Lovespurple]

BrandiBrat - Yes, I agree with making it a social event. I would prefer to be in a shared room with maybe another Epilepsy patient so that I can talk to someone who may be in my position as well. Thanks for the cot suggestion for my mother, but she fidgets and turns in her sleep so that she takes up half of a double bed. How big is the cot?

nelly - Your Video EEG experience sounds good. I hope I have a similar experience IF I go through a Video EEG.

CQ - Hopefully I can get my own bathroom, but IF I do a Video EEG, I wouldn't mind sharing a room and a bathroom with a fellow Epilepsy patient, as long as they are tidy and don't trash both rooms! If I do get a Video EEG, I hope that my friends will visit me, even if my hospital is an hour from my school. I could bribe them with cupcakes !

 

[BrandiBrat]

Awe, no I can see her falling out of a cot! Plop, right on the floor! It's quite small, even smaller than a single bed. I'm not sure what else would be available other than a recliner... Hmmm, let me think.

 

[Lovespurple]

BrandiBrat - Oh, okay then. I guess the cot isn't an option then. Nelly said that there was a small charge for a service that allows family members to have a separate room, but I don't think that the service will be present in my hospital. I think that the only reasonable option for my mother would be for her to have her own hospital bed, but it's likely that they'll make her sleep on a chair, so she might be okay with that since she's fine with it when we fly to Pakistan (7+ hours trip each way).

Going back to my question about food, do you (or anyone else) think that it is likely for my hospital to offer Halal ("permitted" in Arabic) meals? I'm sure they have a big percentage of Asian patients (possibly between 30% and 50%). By the way, I'm not getting freaked out by the thought of a Video EEG, I just want to know and be prepared if I do have to have a Video EEG.

 

[BrandiBrat]

From the articles that I've read it sounds like you can request it. Although being that I am from so far away...I obviously don't know first hand. I just know from what I am reading. I'm sorry I'm not more of a help! Can you call the hospital that you would be staying at and ask them? I'm sure they would be very helpful at answering questions, I know mine is.

 

[CQ:)]

Lovespurple.
I think hospitals can cater for different diets as I am sure there are a lot of people who are on different diets (eg vegetarians, gluten free).

If your neurologist does decide to book you in for a VEEG then you may be able to ring the hospital to find out about the food.
The hospital may even have a fridge which you could keep your food in, just make sure it's labeled.

When I 1st found out I would be having a VEEG my epilepsy nurse sent some information about the VEEG & what is involved. That included a DVD which I had to watch then send back, a booklet all about the VEEG & what you could take to the hospital.

CQ - Hopefully I can get my own bathroom, but IF I do a Video EEG, I wouldn't mind sharing a room and a bathroom with a fellow Epilepsy patient, as long as they are tidy and don't trash both rooms!

I live at less a 3-4 hour drive from the hospital where I had all my tests, the surgery & where the epilepsy clinic is. I was originally booked in the VEEG monitoring ward for 2 weeks but only needed to stay there for 1 week. One of the reasons why the epilepsy nurse made sure I got the ensuite was so my Mum could do some washing. My Mum had bought a portable clothes line (perfect for camping) which you could hang up anywhere so each day she'd hand wash our clothes & hang them up in the ensuite to dry.

 

[nicholas:)]

Lovespurple.. I had a two day video telemetry (originally booked in for a week) in Hampshire in 2010. My GP referred me to a neurologist who booked me in for the procedure. I had an en-suite. The bed room had a television set. The inconvenience was that I was wired up so was limited to where I could walk to - enough cable to get me to a chair and the bathroom. One is aware of the cameras.. difficult to forget at first - so on one's best behaviour!

The food was standard NHS - good enough for me. If you have friends/family with you no doubt they could pop out for food for you. I had to sleep on the bed with no covers - they like to capture your body motions without covers on and at home I like plenty of covers. I was lucky, I only had two nights - I'm one for pottering about and I found the whole experience physically and mentally restricting. Good luck with yours should you have one.

 

[BrandiBrat]

If they take your covers away, do they make your room really warm? Seems you might be chilly