Tag Archives: EEG

Telemetry

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3 months passed and i was struggling. I was depressed and upset and each and every seizure brought with it emotional pain as well as physical some seizures would mean dislocated shoulders, bruises and sprained ankles. I carried on best as i could and then an appointment. It came out of the blue but i went. I met the most wonderful Dr id seen since dr terri, surprisingly this dr new terri too. We got down to trying to work things out. I went through my history, my tests. Id brought all my letters and reports from previous consultants and mum was there and explained the seizures.

We also said about my headaches which were more and more violent than ever and becoming more frequent. We started by a change of medication and i was sent to kings college hospital in the city for a telemetry EEG. i was scared as the thought of being in a hospital in the city but on 3rd december 2010 i got picked up by a hospital car and mum and i went to kings college hospital.

Wires!


Telemetry in Kings

When we got there i sat in this waiting room and well….. waited. While there i met a girl who had come in for the same thing. her name was ashley. she was knitting on a hat loom which interested me as i liked to do craft too and had brought in some craft bits. We talked and then I got called in. We agreed that we would meet up later.
I got taken into this room and asked to remove my top half of clothes and put on the front opening clothes id brought. I only had a corset type vest to that opened up at the front so i changed into that and then the man got to work. He combed pieces of my hair out the way and shaved a tiny bit in places as my hair was thick and then rubbed on some glue he then took an electrode and placed it on the scalp. the rubbing motion really gave me a headache as he had to press hard for them to take…. 53 times this was done and eventually i was complete.

I looked like medusa the lady with snakes coming out of her head. i was given a jacket which i had to put on and i was then hooked up to a battery pack. This was then put into the computer and i was taken to a room.
In the room there was a bed, big reclining chair lots of blankets and tv as well as all the normal hospital equipment on the walls like oxygen/suction etc. also in the room was a monitor and a cctv camera pointing at the bed.
I kinda found this creepy at first but surprisingly got use to it quick.
I had to stay in the bed for as much as possible and only go out of the room to the toilet which was just next door. I sat on the bed and the man attached the wires to a long thicker wire. Thats it i can only go as far as the wire would let me.
I tested it out once he had gone and as i walked out the room for a quick test i saw ashley she had been hooked up to and we could only meet from one end of the nurses station to the other. She was in the room next door so she would walk up to one end (as far as her wire would let her) and id walk to the other end (as far as my wire would let me) we exchanged craft ideas and gossip and slid things up and down the nurses station for a week and we became good friends.
She lives quite far but we text and email and call now and then.
After 24 hours of being off my medication id had one absence and one big seizure. I was getting a bit freaked out as the nurses ran in and put the cot sides up before i even knew i was going to have a seizure… i didn’t like this as it was weird them knowing before me!
Kara had made me up a parcel a day to take to hospital. I opened them each day and often found something to do in each parcel which was great and well needed as hospital was boring without not being able to walk any distance as i was hooked up.
I watched many disney movies and talked to the nurses and time did pass.
ashley had been discharged a few days previous to me as her seizures didn’t show up on screen so she would be having another type of treatment as hers wasnt down to epilepsy. I was stuck. When they got all the information they wanted i went home. Tired and relieved to be back on full medication i hoped the seizures would slow down a little now. 

The Beast take 2

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At the hospital surprise hit me…. It was dr teri ! ! !!
does nothing change in these places i thought! i was happy to see a familiar face though as i felt silly, scared and like my world had come crashing down, and i was back to stage 1.
Dr terri looked at the report the school nurse had put in and listened to what mum said and asked about my feelings…. He decided that it would be best to send me to a specialist (more so that him) the carbamazepine were not working very well and it had all come on quite quick. On the way out i had to go for another EEG, ECG, MRI scan and blood tests. God how i hated blood tests. 
i was referred to Dr Mick at a specialist centre. This centre was a weird place, like a old victorian house with a long thin stair case leading unto a landing and a couple of rooms then another staircase leading up to where we needed to go. i booked in and sat down with mum in the waiting area. The centre was used for ill and disadvantage kids on certain days and the room was filled with toys…. i remember thinking how stupid it is to have a building like this for disabled children when they had to climb 2 lots of stairs and squeeze down corridors…. not a place easy for a wheelchair and no lift! the place has been re-located now but at the time it must have been a logistical nightmare for staff and parents!
Dr Mike was lovely. He was a very large man who looked quite scary but his manor was impeccable. he went through the results of the EEG, and MRI and blood work with mum and I.
The blood tests showed that the level of drug in my blood was not very high so thats probably why it wasn’t having much effect. The MRI showed some darkening over the left side of my brain which added up with the EEG results which showed most spikes over the same area and then a few in the rest of the brain. He concluded i had absence seizures (id been daydreaming a lot but the nurse had reported a couple of spells of this (that i was totally unaware of) in the day after the seizure at school. and also complex partial of the left temporal lobe with secondary generalisation.
This meant nothing to us at that point but i got on the computer and with a few leaflets that dr mike gave us i done my research with mum. We were both pretty horrified as i two types of seizures but tried to stay positive as we’d got settled on medication before so surly we could do it again.

The Beginning

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I first had a seizure aged 4. I had severe whooping cough, where I stopped breathing for over two minutes. My mum tells me I was held out the top floor window of the house and swung from side to side to make me catch my breath. As it was a cold Octobers evening, im glad to say…. It worked!!!About a week after this and in my first year of primary school and I was sitting on the worktop with my mum helping to make my sandwiches for my lunch box. I suddenly felt strange and funny. i said to my mum “mummy I feel funny”  it was an aura. The pins and needles, the thick feelings the deja-vu. (for those of you with epilepsy you will know this well).The next think I knew I was on the floor. My mum had just witnessed my first grand-mall or as they are now called Generalised seizure. I woke finding myself with her by my side cuddling me. I had no recollection of what had happened, but felt dreadful, tired and sleepy. (I cant remember being scared and mum has told me I took it in my stride- being as stroppy as ever and not wanting to rest!…. that hasnt changed an awful lot now, as I still get frustrated at times!) Anyway I missed some days of school due to my fisrt seizure, I was taken to the dr where I was given the all clear and mum was told to come back if any more problems. It didn’t take long as by the next week I was back in the DR’s room after having 3 more fits. I was sent to the Hospital and the roller coaster began.

I was a bit scared going to hospital. My first hospital visit i met the dr, (dr stefani).  I couldn’t say his name and therefore he let me call him Terri which sticks till this day if I ever pass him by. He quickly examined me including guessing what I had for breakfast! CORRECTLEY (which astonishes me till this day!)  and then sent me for some tests including a EEG, blood tests, X-ray and ECG. A complete MOT!
The tests seemed a bit big and strange but Terri wanted them all done that day, so off we were fore a trip round the hospital. First to Blood clinic, which with a bribe with a chocolate bar and hug from my bear was done. Then X-ray, ECG and then EEG (which I was going to get to know very well over the years). 
After a couple of weeks I had an appointment to go back for the results. During this time I had a total of 8 seizures and my life was going changing. My school were not letting me join in games and mum was obviously worried. 
On the day of my results we went back to the hospital, Terri called me Jamima puddle duck from down the corridor he knew I liked the Jamima puddle duck story! He was so funny.. Mum and I walked into the office and sat  down. 
I cant remember what was said exactly but we were told I had epilepsy. We were told what I could and couldn’t do, and precautions to take. I understood some things, as terri also explained it to me so I could understand. 
That night at home I had to take some medication, tegretol (carbamazipine) they looked like boring sweets.  Mum told me what they were and I had to take two. I did. 
My first ever EEG Age 4.