Wires on my head!
Well I can’t say these wires on my head are my best look. But when no one knows what is going on inside your head an EEG like this is the great experience you get to have.
EEG
The other week I was in hospital for an EEG. I have spoken with many doctors and think its fair to say no one has a clear answer about my broken brain. So I got to enjoy a visit to hospital for my brain to be looked at closer and for doctors to try and see the problem.
The first picture shows my brains reactions being read from the wires on my head. It was pretty entertaining watching what was happening from my brain on the screen. Anytime I laughed or reacted more the screen just went ballistic!
I spent 7 days in hospital like this as doctors continued to record my brains madness. Instead of avoiding seizures like normal there was hope for many seizures to be recorded in hospital. There is so many question marks to what is really affecting my seizures and where my brain problems are truly coming from.
This was also not just a regular EEG, it was a video telemetry EEG. Not only was my brain being read through all these wires but a camera was recording and watching me as I was in the room. As I moved around the room this camera was following me and it was very bizarre.
In hospital
Sitting in hospital waiting for seizures was not the most fun. I made my way through a lot of episodes of Good Girls and Vampire Diaries on Netflix. It can feel very frustrating waiting for seizures in hospital for doctors to see something.
It was of course classic as I had many seizures the week before I was in hospital and not as many the time I was in hospital. However I had three main extensive seizures while in hospital giving doctors a chance to see my seizures. Video telemetry meant that they could see a seizure happening as well as reading through the wires on my head.
One of these seizures also happened when one of the nurses was with me helping with the wires. She was a very lovely nurse that came to help with the wires everyday. She explained to me about the EEG in an interesting way. I asked about how the wires actually read what was happening in my head. These wires are on the top of my head not closer to my brain. She said how it works is as it is on top of my head not inside my head it’s like hearing someone from the room next door not closer to where the reacts in the brain are happening. This was quite a unique way to explain what the EEG is showing the doctors.
Hospital is always fun… with the classic 5am wake up call to get your blood pressure checked and the lovely hospital food. I have to say I never rush to eat the food they offer me. Especially as I am a vegetarian the options become even smaller!
Time went by pretty slowly so the pictures above shows one way I entertained myself was by doing a few drawing on the whiteboard that was there. Some pictures of my brain and the problem I was there for as well as a daily countdown of my time there I felt was necessary.
I have been in hospital quite a few times and I have got to say it had to be the nicest hospital environment I have ever been in! I was used to wards with multiple other people in it and very old and a tired looking hospital conditions. But this time I was in the new Edinburgh Royal Infirmary hospital with an entire room to myself! It was like hospital luxury haha.
My Epilespy
It has continued to be a question mark on what is the real problem and answer for my brain. After my brain tumour was removed when I was 7 it of course left scaring and affected my brain. My brains usual way of working now has a massive whole in it and naturally my brain is being affected by it and has led to Epilepsy.
Epilespy can be different for so many people. The kind of seizures you have. The way it impacts you. What causes them. But figuring out how to fix them is a whole other story.
Feel I have tried every medicine under the sun. What is the answer for my broken brain I just don’t know. But this week in hospital doctors have had a chance to see it closer and have a look at the problem and hopefully one day I can find an answer.
Lucy xo
ps. Feel free to check out my Tiktok account where I have shared more: @lu.mcmen
