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Newcomer Aged 55 With TLE For 40 Years

Tue, 01/13/2015 - 07:17

Hello to Everyone and Anyone,

My name is Shane, I'm aged 55 and I'm from England. Please bear with me but I'd like to share my own experiences of TLE and would welcome any feedback. First of all, I have to admit that I never knew this site existed! However, I'm glad that I signed up, because I can identify with just about everything I've read on this site so far.  "A Typical Story", it says on the first page. That is my story too!

My first experience of TLE was at the age of 15 and approaching my "O" Levels at the local grammar school. It was at assembly one morning when the whole school gathered in the main hall. I was suddenly hit by something that I could not then describe. I wanted to run for the doors, but I was rooted to the spot! It lasted for only a couple of minutes, but I had never experienced anything like it before. I now refer to these occasions as either "dizzy spells" or "dream sequences".

Following several more of these "dream sequences" I was persuaded by my parents to see my GP who made an appointment for me at the main hospital in Nottingham. Several weeks later I underwent an EEG (I cannot remember an MRI, although that may have taken place), and the specialist diagnosed me with TLE. I cannot recall what medication I was given at the time, nor much else of what the specialist said to and my parents. However, my mum was convinced that my "problem" was due to an incident that occurred when I was about seven years old.

Every summer my parents and I (I am an only child) spent a couple of weeks at my grandparents cottage near Melton Mowbray, in Leicestershire. I had been playing football with my granddad for most of the day, and I was still in a playful mood when it was time for me to go to bed. I remember running along the corridor to my bedroom and leaping onto the bed. Unbeknown to me my grandma had placed an old ceramic hot water bottle under the sheets, and as I landed on the bed my head came into contact with the "bottle" with a loud crack! I cannot remember much else, but needless to say everyone panicked and came rushing to the scene. I did not go to hospital, but it left me with an almighty headache. Nothing more was said and done, as I seemed to be okay. However, it is this incident that prompted my mum to suggest a "cause" for my "problem", and I must admit that I now believe that she was right.

My "dream sequences" continued sporadically, and I would have to say that when they did occur then I could get a maximum of three in one day. After that I was fine until the next one occurred months later. However, at the aged of 20 I experienced my first seizure. One Saturday morning I had about a dozen "dream sequences", which was out of the ordinary. During lunch I needed to go to the toilet, and the next thing I knew I was being lifted off the floor by a paramedic or one of the ambulance crew! My dad must have heard the noise as I fell to the floor and rushed upstairs. Apparently my tongue had gone to the back of my throat, and as my dad tried to retrieve it I must have bitten right into his fingers drawing blood. I seem to recall trying to resist the paramedics attempts to get me to the ambulance, but I believe that I was kept in hospital overnight. Needless to say my parents were extremely anxious and worried about my condition, but curiously I never had another seizure for almost 30 years.

I would say that my "dream sequences" occur when I am feeling stressed out. This is a combination of tiredness, exhaustion, but above all worry. And I can be a great worrier! Like the "typical story" on the first page of this site, my initial reaction when one of my "dream sequences" comes on is to say, "Here we go again", as if I've been through the exact moment time and time again. There is nothing I can do to stop it, so I let it continue, and it usually lasts about two minutes. During these periods I am usually rooted to the spot. I try to continue with what I am doing at the time, but I simply can't. Everything is confusing and appears unknown to me. Yes, I try not to talk, but I can hear others around me, and what they say just doesn't make sense. On the rare occasions that I am forced to talk, I feel that I can't express myself, or that I am talking gibberish! Sometimes my "dream sequences" can be mild, but sometimes they can be so severe that they leave me with a throbbing headache that lasts for the rest of the day. They literally "wipe me out"!  

As for my seizure, at the time I was going through a bad time with my then girlfriend. Everyone expected us to get married, but I was having my doubts - and worrying! We parted company some months later. From that time I merely suffered the occasional "dream sequence" and nothing more. I was eventually prescribed Tegretol, which I found to be a Godsend! They were terrific, and I followed the prescribed dose religiously. For some reason my GP changed my prescription to Carbagen (Carbamazepine) about ten years ago, and I have to say that they are just as good as the Tegretol. However, an incident occurred six or seven years ago that I believe has prompted more seizures.

I have been a postman for 18 years, and on one morning six or seven years ago I was hit by a car on my delivery. I had come to the end of a row of houses and needed to cross the road to get to my next point of delivery. Unfortunately this was on a bad bend in the road. I could see if any traffic was coming from my left, but I was "blind" to any traffic that might be coming from my right. Furthermore, the sun was at a point where it literally "blinded" me from seeing anything from the right too. Nevertheless I decided to cross the road, but as I shot across the road a car came around the bend and hit me. The car was only doing between 20 and 30mph, but the impact threw me some distance ahead! I remember very little at that point, but I must have banged my head considerably, as there was blood stans either side of my head. To cut a long story short I had fractured my collar bone and was off work for several weeks.

However, since that incident I have had about a dozen or so seizures, some of which were pretty bad. My father died some years ago, and following the break-up of yet another long-term relationship I cared for my mum, who eventually developed dementia. She died in December 2013, but I had a number of seizures before then. They have tended to occur during the middle of the night as I am sleeping. On one occasion I woke one morning to find my pillow cases covered in blood. "How had this occurred", I asked myself? And then my tongue started to feel sore. I had evidently bitten in to it during a seizure.

I am currently involved with another wonderful lady who has been present when I have had a seizure - thank goodness. Again, I bite into my tongue and she informs me that I salivate greatly and speak gibberish. I also tend to smack my lips, as suggested on this site. My last seizure about a year ago, following the death of my mum. My partner was staying with me at the time (her mum also has dementia), and for the first time I can recall much of what happened. We hadn't been in bed long when I suddenly started making awful noises, and I knew what was happening. I tried to sit up as my partner turned on the lights (she used to be a nurse). For some reason I wanted to go to the toilet, but I couldn't move and my partner wouldn't let me. I remember salivating badly and talking gibberish. I kept saying something along the lines of "But I've got to do this or I've got to do that", but she was brilliant. She always is, but although she was a nurse for many years my seizures cause her to be terrified. I'm just so thankful to have found such a wonderful woman.

I hope that I haven't bored you all, but this is my story. No doubt some of you can identify with it, and I would be delighted to hear from anyone with regard to it. I wish that I could "cure" my problem, but my main fear is that more seizures could occur. I sure do understand and appreciate what fellow sufferers must be going through. My heart goes out to you all. Thanks.

    

 

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