Video telemetry is used to help Neurologists to determine what’s going on with uncontrolled seizures. It involves a stay in hospital for several days. 

During the stay wires are attached to the head and the EEG equipment is turned on along with video cameras.

The patient is isolated in a private room and is recorded and monitored 24 hours a day for the duration of the stay. There is a private bathroom in which no recording takes place.

Our volunteer Dave, recently had a video telemetry stay at the Clinical Neurophysiology Department, Royal Infirmary in Edinburgh. He kept a diary of his experiences. Here is part one of his stay.

Day One

I phoned the ward at 10.30am to check on bed availability as instructed in my appointment letter and was told yes and to come at my appointment time of 2pm.

On arrival at the ward, I was met by a nurse who showed me to my room which was to be my home away from home for the next seven days. The room is spacious, comfortable and has a TV with Freeview and free WIFI access.

There is a wardrobe provided for clothes and a small cupboard for storing drinks, snacks etc. There is also a private bathroom with no camera.

Once settled in, I was visited by one of the doctors to check over my seizure history, my medication, to discuss what the plans are for my stay and to make sure that I understood and was happy with the plans.

Although written consent is given you can change your mind and withdraw at any time during the stay.

The EEG and video monitoring will not be taking place until Monday so the weekend is used to observe and to begin any changes that they want to make, in my case my Neurologist has requested a 50% reduction in my medications from tonight, a somewhat scary thought but necessary.

Day Two

I had a peaceful night and slept well.

Unfortunately, on awakening this morning, I had a seizure which was witnessed by the nurses who looked after me well and made sure that I was safe.

This seizure may have been down to my medication reducing by 50% or possibly triggered by the stress /anxiety due to the changes in my normal routine.

My partner Clair and my youngest son Kyle came in to visit me and I was able to leave the ward for a while and get a cuppa and a much-needed cigarette (this won’t be possible once the wires are fitted).

My lunch today was a sandwich and a cuppa and for dinner I had a baked potato with cheese. The menu choices are reasonable with three choices for each mealtime and the staff are very accommodating. Snacks and drinks are available anytime that you require them.

The rest of my day was non-eventful and happily no more seizures took place. It is boring staying in one room and I’m really glad that I brought my laptop with me for entertainment.

Day Three

This is the last day before the wires are attached and the video telemetry begins and also the last day that I can leave my room with visitors and go for a cuppa and a cigarette (nicotine patches are provided by the hospital on request).

No seizures today and I am now mentally preparing myself for the restrictions that having the permanent EEG will cause, including as I stated no leaving my room, no smoking and unfortunately due to the equipment no showers.

I will be able to wash at the sink and have also brought wipes to aid in keeping myself clean.

I am determined to remain positive and will use my isolated time to catch up on movies, any Netflix series that I’ve been meaning to watch and I have a very nice view from my window for any contemplative moments that I may have.

Also, I am still allowed visitors during my telemetry and they will be a very welcome distraction and support.

Visiting hours here are any time after 11am up until 8pm.

Day Four

The EEG wires have been attached this morning and I’m now being recorded 24 hours a day.

It’s not the comfiest set up with wires glued to my head, held in place by a net and carried about in what I’m now referring to as my “electric handbag”.

I am plugged into the computer behind my bed and have a lead that reaches my private bathroom, I will not be able to leave this room again until I go home on Friday.

My head is somewhat itchy and the bag which is worn over my shoulder is rather heavy and feels like it’s permanently pulling on my neck and head.

However, it is absolutely necessary and a small inconvenience if it is able to detect the source of my seizures and ultimately improve my seizure control.

I had a focal seizure this afternoon which was caught on camera and recorded on the EEG, I had a very sore head, was exhausted. However, I am delighted that it happened as it makes this whole experience a very worthwhile one.

It’s now that the advice to bring zip/button tops makes complete sense as it’s literally impossible to put anything over my head.

Part two of Dave’s video telemetry diary is available to read here.