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 two of his stay.

Day Five

Had a seizure on awakening this morning and was very emotional on recovery, probably due to the reduced medication. As hard as it was, I’m pleased that it was caught on EEG and camera, the nurses as ever were very caring and showed wonderful empathy.

Had a visit from my Neurologist who is pleased to have caught some focal seizures, however he is hoping to trigger a tonic-clonic, so as of tonight my medication is being completely withdrawn.

This is being done with my consent and as always, I have the option to refuse.

I am anxious about what may happen, however I am equally confident in the abilities and knowledge of the nurses and doctors in this hospital.

My bed now has the sides up with padding and I will be monitored closely throughout the night.

It is an odd feeling to hope for a tonic-clonic seizure but I am thinking long term that if a solution to control my seizures is found, my life will change immeasurably.

Day Six

This has been the most difficult day so far, between four and six o’clock this morning I had three seizures which left me very emotional, scared and exhausted.

However, this was the desired outcome for my Neurologist to see exactly what is going on and I am positive that these events will have a huge impact in my future treatments and will ultimately help to give me much better control over my seizures and improve my quality of life.

The nurses and support workers on shift were absolutely fantastic, kept me safe throughout and made sure that I was comfortable to recover as soon as possible. I slept for most of this morning and was checked on numerous times.

I had visits from my partner Clair and my best mate Andy, both of whom I love and appreciate so much. Their positive attitudes and support have given me a much-needed boost and I am feeling much stronger mentally.

I don’t normally have an appetite following seizures but today I made myself eat lunch and dinner, both of which were nutritious and I must say delicious and have given me the energy to keep going.

I have two more nights here and I must say that the time has gone quicker than I expected it would. Although, I am still clock watching somewhat and look forward to these wires being removed, a long hot shower and a comfortable night in my own King Size bed.

Day Seven

This is my final day of recording, and I am somewhat tired today due to being sleep deprived last night in the hope of triggering more seizures.

I managed to stay awake until 5am with the use of Netflix, blasts of cold air from my room window and the wonderful nurses bringing me cups of tea.

I had a focal seizure just after finally going to bed but unfortunately not the tonic-clonic that we were hoping to get. It has been decided that I will try sleep deprivation again tonight on my final night here.

I would be telling a lie if I said that it has been an easy week, medications withdrawn, sleep deprivation and numerous seizures.

The wires are fairly uncomfortable, being confined to one room is not a pleasant experience and for me the worst part is being unable to shower and having to wash at the sink due to the equipment.

These inconveniences are manageable and I just reminded myself that if, after this, I can get better control of my seizures and if my data can help others in the future then it is so worth it.

A huge shout out to the nursing staff in ward 231 for their care, kindness, professionalism, knowledge and empathy. They all made my stay as comfortable as possible and most importantly made me feel safe.

Day Eight

This is the day that I go home, unfortunately no tonic-clonic was triggered last night and after finally getting to bed at 5am, I am awake and up at 7.30 am (possibly down to the excitement of going home).

My wires have been removed and I’ve just had the longest and most enjoyable shower of my life.

I am dressed, bag packed and as naughty as it is, I have been out for my first cigarette in a week.

Neurologist paid me a visit this morning and is happy with all the data collected and after properly analysing the results will have me into the clinic to have a discussion about any changes to my epilepsy care plan.

I hope that my diary has been helpful and that has hopefully removed any anxiety for others about to embark on the same journey.

More information about video telemetry can be found here.