A little update

As you may already be aware from previous posts I am not yet driving however I have now started the process of filling in my provisional forms (again). I only require a few small details from my doctor and a not so glamourous photo to complete the application before being sent away… Yay.

For the first time, in a long time, I am actually excited to be looking forward to learning but I suspect I will still be a little apprehensive though this may pass with time.

I have decided that in the meanwhile there is actually nothing stopping me from taking some practice questions online. I took the first test online without any revision just to see what I had learnt from being a passenger all these years and to see which areas I need to brush up on in the Highway Code.

I started the test and by question 11 I felt that I was not doing so great yet a few questions later and along came those ones that are designed to catch you out, for example: what should you do at a red light? I should hope stop!

I finish the practice test with 43/50 being a pass. After reviewing the ones I got incorrect it was obvious to me that I needed to read the question a few more times or RTQ as one of my teachers used to drum into us pre-exam time.

So a second go and another 43/50 but different incorrect answers.

I recalled downloading some Theory Test app onto my phone a while back as a just for fun thing. I managed to find it and began answering the questions on there with an average so far of 84%. It is apparent that motorways are currently my worst category at the moment but I have never liked them!

There are only two peoples driving that I fully trust. My dads and my best mates.

The following 3 tests results came as 39, 46 and 47, gradually getting better it seems however the same questions are repeating themselves quite often and so off to the practice sections I go and it seems there are 14 lovely sections for me to answer questions on.
I’ll be back soon (hopefully sooner than two weeks) to update on revision and to hopefully fill in some more epilepsy related things.

Take care all.

Seizures – the after effects…

Yesterday (9th) marked 3 years seizure free and I know I should be crazily happy. Yes I am grateful but I just can’t seem to be happy. Perhaps I am stopping myself out of fear one will come along and bring be back down to Earth with a thud… Literally.

And that’s just the thing. The fear does not leave just because the seizures may have stopped.

I think a lot more emphasis needs to be put on the impacts that seizures have immediately after they occur and the impacts they have on life as a whole.

The name given to the ending of a seizure is the Postictal Phase.

Much like an aura the duration of the postictal phase may depend upon the part of the brain where the seizure originated and in turn this may have an effect on what happens during this phase.

Now if you do not have epilepsy imagine having say three seizures a week. You recover from one perhaps quicker than the other but still your brain remains a little foggy as you try to recall when, where and what happened and you begin to question yourself “why did it happen?” even though you know full well. By the time you have it figured out you have another seizure and so the cycle continues.

For me whilst I was at school I would often forget what I had done that day and sometimes the days before. This meant I would forget what I had and what I needed to learn and although I may have had it written down it made little sense.

However, amnesia is just one of the symptoms someone with epilepsy may face in the postictal phase.

Other symptoms include -
Exhaustion – mentally and physically
Weakness and inability to stand or walk
Difficulty writing, reading, speaking and thinking
Pain and injuries such as headaches, bruising, possible head injuries, cuts, burns and broken bones,

Whilst some of these physical symptoms may pass the emotional symptoms may continue to impact upon the individual. Someone may not injure themselves each time they have a seizure but they may keep having the fear that is associated with them.

Emotional symptoms
include -
Depression
Fear
Frustration
Confusion
A sense of shame
Sadness
Anxiety
Embarrassment.

Everyone will have experienced these feelings at some point in their life but with epilepsy (and other seizure disorders) these can be a recurring thing.

I knew from the start not to be “embarrassed” about having seizures as I could not control it and so it became me but to many others this may not be the case especially where there is still a stigma attached to epilepsy.

I would not say I have ever been depressed but certainly have had times where the pillow became my best friend at night in terms of tears and once again the fear has never left me.

But to raise awareness of these postictal symptoms first awareness of epilepsy itself needs to be raised which is something I hope will be achieved in the future and bringing it into the limelight as much as other conditions.
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Take care all x

Famous people in history with Epilepsy

Now I fancied writing about something a little different but still on topic and so I have decided to look up famous people who have or are suspected of having epilepsy.

There are quite a few people who are documented as having seizures and a few are well known such as singer and actor Martin Kemp.
Other famous people include Charles Dickens, Caesar, Van Gogh, Thomas Edison, Alfred Nobel, Isaac Newton, and the list continues.

Whilst reading some of these names I thought to myself “so pretty much everyone famous”. Clearly it is not everyone famous but without Isaac Newton who would have worked out what gravity was?
Without Thomas Edison how long would we have been waiting for electric lightbulbs?
And as for Alfred Nobel who would have invented dynamite?

Michalengo – without his extraordinary talent would the ceiling of the Sistine Chapel look as amazing as it does? Unfortunately I have not actually visited myself but the photographs show just how much effort went into the creation of it.

Dickens – it is reported that Dickens suffered seizures as a child and refers to his “fits” through a number of characters in his novels.

Two I am particularly interested in finding out more about are that of -
Vincent Van Gogh and Lewis Carroll.

It is thought that Van Gogh may have suffered from Temporal Lobe Epilepsy (the same epilepsy which I have).
I found this site particularly interesting Change

Now.
Lewis Carroll – were the hallucinations he suffered what made Alice in Wonderland so popular?
I refer back to the post of auras

For example: objects seeming bigger or smaller. Referring to Alice eating the cake and drinking the potion.
The feeling of falling which is mentioned when Alice falls down the rabbit hole.

It is not fully known whether Carroll suffered from epilepsy, migraines or some other neurological condition however the things described do suggest that the symptoms may have been auras preceding seizures or possibly complex partial seizures.

In a strange way although not all of the famous people from years and years gone by cannot have a definite diagnosis of epilepsy it is in a bizarre way comforting to know the sort of people who did share epilepsy.

Again as with all posts so far I shall research into them some more and update as an when.

Take care .
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Auras – a brief explanation…

What are they?
You may have noticed I mentioned about auras in my previous posts.
So what are they exactly?

Some, but not all, people with epilepsy may experience an aura. . In the case of epilepsy auras are simple partial seizures.
Auras can be a precursor to larger seizures but they can occur on their own.

Auras can manifest themselves as:
Visual, auditory, psychological and physical changes.
The following lists some but not auras which can occur.

Visual disturbances include:

hallucinations, dilated pupils, distortions such as shapes, sizes and colours.

Auditory disturbances:
can range from buzzing noises, mumbling sounds, a heightened sense of hearing, noises seeming much louder than they actually area and again hallucinations.

Psychological changes include the feelings of déjà vu and jamais vu. They are the feelings of both familiarity and unfamiliarity.
There may also be a sense of anxiety or fearfulness.

Physical changes can appear as:
Veritigo and unsteadiness, weakness, repetitive movements, jerking of limbs, chewing and lip smacking to name a few.
Some physical changes are the ones that others can see (other than dilated pupils). With physical auras others around you are aware of what may be happening. It is important that if you do experience any of the auras mentioned you should alert someone to them if possible.
For example: should you complain of a visual change for example they can they seek assistance should you go on to convulse.

Where auras can be a precursor to a larger seizure they help act as a “warning sign” in someways by giving time to get to a safe place, to ring someone or to get assistance.
Before I had surgery I had no obvious auras but somehow knew I was going to have a seizure and then immediately have one. It was long enough to tell someone but often not long enough to get to a safe place.
Since surgery I have had a handful of seizures and with these came strange senses of both déjà and jamais vu and auditory changes. Most noticeably the feeling of being in underwater and sounds seeming much louder and “boomier” than normal. I say “boomier” in the sense that it seems as though someone has turned the bass up on everyone’s normal speaking level.

The lists mentioned include some but all auras and the aura(s) a person may experience will vary from person to person.

I hope to cover auras more when I look at different types of epilepsy.

Stay safe.

EEGs and MRIs

Two tests in which you may have to undergo during diagnosis of your epilepsy are an EEG and MRI.
Firstly neither are painful nor can they read your thoughts.

I remember some of my EEGs one in particular being at what was Radcliffe Infirmary. A very lovely technician, who happened to remember me from another EEG, greeted me with a smile and talked me through it though I already knew what was going to happen.
I was asked if I agreed to being video’d for learning material in the States. To which I agreed as the more information that is gathered the better.
Although knowing I am not photosensitive the flashing light still fears me with dread simply because I do not like the things in the first place.

As for MRIs they are not as bad as they sound though do get a little boring after a while as laying down and listening to the noises from the machine is not great fun but anyway all in the name of finding out what is wrong.

So what are they exactly?

EEG stands for Electroencephalogram.
An EEG is a recording of the electrical activity within the brain.

The procedure includes a technician taking measurements of the patients head. At certain intervals small marks will be made and this will go on across the scalp. This is so that the technicians knows were to place the small metal discs which take the reading of the EEG. They are attached to a monitor via leads and you may be able to see your recording as it is being carried out.

These discs are attached to the head with a special adhesive and it is painless but may be a little uncomfortable.

During your EEG you may be required to -
Breathe deeply, both fast and slow, which can change the activity within your brain and so this will appear on the EEG reading.

Photic Stimulation will also occur. This is the strobe lighting which many people believe cause seizures when in fact only a very small population of those with epilepsy have are photosensitive.
During the test you will asked to look at a very bright light. Then it will start to flash. Slowly at first and should the technician not be seeing any differences in brain activity on the slower settings they shall adjust the speed accordingly. The room will be dark whilst this is carried out.

You won’t receive your results straight away as it takes as they need to be analysed. As with all tests the length of time it takes for you to receive your results will vary.

The other test is an:
MRI (Magnetic Resonance Imaging)
Firstly not all people with epilepsy will undergo an MRI scan.

An MRI involves the patient having a scan of their brain being taken.
The aim is to see if there is any damage or abnormalities to the brain such as scarring which may be the cause of your epilepsy.

A MRI can be a noisy experience but earplugs are provided and some hospitals allow the patient to choose some music to be played which will help them focus during the test.

Your head will be in a scanner whilst you are laying down. There is a small mirror in which you are able to see the radiographer (behind a window) and should at anytime you do not feel well you have a buzzer in which you can use and the scan will cease.
The test may last up to one hour but is painless and again they cannot read your thoughts.

It is possible that if anything is discovered then you may have to undergo further tests in the future and I will cover these in posts to come.

In the meanwhile take care x
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My journey some more..

Not in the most logical of orders and to be completed but here it is:

So my seizures started six months before my periods and six months before I started Upper School – what a joyous time.

In 2005 I should have finished upper school and should have been planning which university I wanted to go to and be doing all the things a normal 17 and 18 year old would have been doing. But I was not. By the end of 6th form (2 years) I was averaging a seizure once every three days. My grades from GCSE were not great at all. Whilst my friends went off to jobs, apprenticeships and university I was still at school. I stayed an extra 2 years. The first year was to gain an extra qualification in order to get enough UCAS points incase I did decide to go to University. The second year I returned and I was now 18 and had undergone surgery therefore missing 2 months of school.
I was not yet ready within myself to go to university and after a chat with my head of year he allowed me to return to gain an AS level.

I did eventually get to university, albeit the local one in 2007 and in 2011 I graduated with a 2:1 in Marketing. Hoorah! somehow I survived.

Going back now and I would have qualified for a seizure alert dog, disability living allowance, carers allowance and a free bus pass. None of which I knew existed at the time and therefore never claimed anything.

A few memorable seizures (and by memorable I mean what I can remember before and after the seizures) include:

I was at school, sat next to the guy I “like”, the same one whose birthday I missed because I was having an MRI.
It was an after school geography revision session and we were sat at the back of the class. I went from learning about volcanoes or something equally as exciting to being in the girls toilets. Not quite knowing why I was there.

The head of year then rang my mum asking if it was alright to give me a lift home. I was adamant that I would walk as I was and still am a stubborn little thing but I guess now that would have been foolish considering the state I was in. The next day nothing was said by anyone. It was as if it had never happened.

2. Another holiday, another seizure. We were getting ready to go for a walk in the evening and luckily I had already washed.
The floor of the holiday cottage was solid tiles. Not the greatest of surfaces to be failing onto.
I got an aura and knew that I was about to have a seizure but couldn’t get anyone’s attention. Dad was outside and mum was upstairs. I managed to make my way to a safe place and had a full blown tonic clonic. After a sleep and a headache later I asked if we were still going out that evening even though I was beyond knackered.

I never learnt to swim and when I came round to swimming lessons at school I could not that part.

I was told that there would need to be an extra staff member to supervise me whilst the other supervised the rest of the class. Boy did that make me feel like an outcast. Yes, I knew it was for my own safety but I am sure they could have put it more tactfully. I do believe I should have had the same rights as the other students and that one member of staff for a class is not adequate enough anyway as anything could have happened to anyone not just myself.

There is nothing to say that a person with epilepsy cannot swim but it is advised you are supervised whilst doing so.
As mentioned in the previous post driving is now a possibility providing the DVLA believe that I am not a danger to myself of other road users. Perhaps I will learn to swim and drive in the near future but to me there is no rush. People say life is for living but it is also there to relax, taking time out and just contemplating and evaluating what you do have and what you wish to do next. For me I do not know! But time will tell.

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My Epilepsy Journey (a brief history)

March 21st 2000
It was not long after my grandad had died that my nan came up to stay for a few days. I had given up my bedroom so that nan could have her own room for the nights so she had her own personal space and so I opted for a sleeping bag on the floor of my brothers room. It was not the ideal sleeping arrangement but atleast it meant I would not be sleeping alone downstairs.

I remember waking up to two green figures standing in the door way, the curry-like smell of the oxygen mask and somehow being transported from a fetching brown and orange sleeping bag to the hard trollies of A&E.
I remember nothing else from my time in A&E nor the following few days.
I had suffered a grand-mal seizure. 2 weeks passed with no incidences.

The following seizure took place in the kitchen. I know I was by the sink but I was unaware that I was “wet” following a petit mal seizure. I was wet as I had no control over what my bladder wished to do at that time.
Earlier that day it was a sports day at school. Sport was something I was highly competitive in as I was one of the best female runners in my year. My teacher had commented how she thought I was going to burst and the seizure followed that evening. Perhaps I had pushed myself too far or perhaps it was a coincidence. Who knew.

By the end of April 2000 I had suffered 9 seizures and by now I had been diagnosed epileptic and scans and testing were being discussed.

By now I must have been well known by the local ambulance crews. I was taken into A&E on the 31st May 2000 after another grand mal episode but subsequently sent home. Only then to be taken back in the following day and admitted to the children’s ward. Goodness knows how much oxygen I had got through on both occasions.

September 2002 and after however many seizures I finally had an MRI scan coming up. I remember the day well as it was a great mates 16th birthday, he was at school and I didn’t get to see him. After the scan and as a treat to myself I bought Bon Jovi – Crossroad on CD. But what would the scan reveal?

Being under 16 I was still in paediatrics which was uncomfortable in itself. Surrounded by children younger than yourself and thinking that they must be suffering worse because they were so young.

On one of my many visits to the hospital we sat waiting. I had been weighed, measured and all the normal things. But then everything stopped. I could not figure where I was, I felt sick and found myself seizing in front of both the waiting room and my pediatrician. To which he was grateful as it is rare they get to witness a patients seizures first hand and to see the effects is has on a patient afterwards.

I remember having numerous ECGs and EEGs but still only one MRI. The result of which came back clear. The paediatrician showed the scan to a neurologist who happened to have come up from Oxford. On closer inspection there appeared to be something there. This came a year after the original scan! From being told nothing was there to then being told there was. Did I suffer a years worth of seizures more than I needed to? yes.

I had hippocampal sclerosis.
Scarring of the temporal lobe and hippocampus.

April 2004 -
I underwent video telemetry. I was hooked up to an EEG machine and place in front of a camera. Which I must say was not very fun at all. My medication was gradually reduced so that it would induce seizures. I was in hospital for 5 days and I that time only needed to have 5 seizures recorded. But me being me I ended up 7 – 3 short and 4 tonic clonics.

This was to see if I was a suitable candidate for surgery as number out medications were not working.

Following the telemetry an appointment was made at the Royal London as it was suggested I may benefit from VNS (Vagal Nerve Stimulation). The consultant basically told me this would be of no use and that without actual brain surgery there was every risk I could die.

Back to Oxford and I underwent Amybarbital testing. In short half your brain is put to sleep at a time and tests carried out based around language and memory. In my case it confirmed that my temporal lobe was not storing anything and was not being of any use to me whatsoever. Therefore it could be removed and not have any effect on my memory or language.

In total I had
67 seizures in 2002
79 in 2003
84 in 2004 and
124 in 2005
Worse by almost 50%. It was clear the medication alone was not doing enough to stop my seizures especially the clusters.

2006 – Surgery loomed.
A right temporal lobectomy and amygdalohippocampectomy.
All went well. A rather nice black eye a few headaches but nothing to worry about. I recovered quickly but had a hard time eating the hospital food and was made to drink protein shakes just so that I had something in my system.
I was out of hospital in under 10 days.

The only thing I remember was a spider (dead or alive) in the light above me just before getting anaesthetic.
I went seizure free from Jan 2006 to April 2007.

My medication began to be withdrawn to see whether surgery alone had stopped the seizures. I was two days off of coming of all meds completely and bam! That hit me like a truck.

Yet I remain positive as I went from 124 a year – sometimes 3 or 4 a day, down to one a year.

The latest was seizure was in 2011. I was on holiday with my parents and as normal we decided to go and have a drink. Suddenly the noise from the people, the televisions and music became too much. I felt like needed to escape but couldn’t. I recall telling my mum that “my eyes were rolling back” and they were indeed.

When I came round I had somehow got from the bar back to the holiday accommodation and questioned if I had had a seizure or not. Silly I know but when you can’t remember the last twenty odd minutes of your life you know something must have happened.

So thankfully now I am coming up to 3 years seizure free and feel a little more positive about life.
I never got a chance to even apply for a provisional license and when people go on about how wonderful driving is you ignore then. They tell me I should apply now but they do not realise the fear of getting behind a wheel and having a seizure can bring.

Living with a hidden condition such as epilepsy is hard even having gone so long seizure free. As epilepsy is often not see until a seizure occurs people will say -
“Oh you don’t look ill” - perhaps because people with epilepsy are not “ill” !
“Well you best stay away from the lights then” – in fact only a small percentage of those with epilepsy are affected by strobe lighting and/or fluorescent lights flickering and the fact this has not been made more aware is often frustrating.
“Why have I never seen you have a fit” – I cannot just make a seizure happen for viewing purposes. They came when they chose! Obviously I hope that I and others do not suffer any more but unfortunately that will not be the case for many.
It was found my seizures mostly occurred in the early evening and so my medication was adjusted accordingly which has been working very well indeed.

It has in no way been an easy or fun journey for the last 14 years. Even now a strange headache, distorted hearing or visual disturbances scare me. These are known as auras.
Some would say it is an irrational fear but to me it is perfectly normal.
Having remembered how my last seizures started I feel I have to get away from the situation. I try to escape but I can’t and I am already on the way to having a seizure. Although you may be with someone you are actually alone. No-one can stop the seizure and it has to run it’s course.

Worrying that I haven’t had my medication sometimes wakes me up at night. Then I desperately try and remember what I would have been doing around the time I was meant to have taken them. The fact the trigger for my seizures was never discovered often fills me with dread.

Something that still annoys me is that people are blissfully unaware that epilepsy can happen to anyone at anytime. Those with epilepsy have a lower seizure threshold than those without but that is not to say that any person can suffer from a severe head injury or infection later on in life that may cause them to have seizures.

They are also ignorant when it comes to the fact that seizures can kill. The sufferer is in the wrong place at the wrong time (eg) in a bath, crossing the road or may suffer from something known as SUDEP (Sudden Unexplained Death In Epilepsy). I am well aware that my seizures may have caused much more that just a few bruises and a bitten tongue and that even surgery itself could have gone terribly wrong but it did not and I am still here.

Whilst typing this I did get a little upset and at times stopped for a few hours to just chill. I will be writing more soon about personal experiences with epilepsy such as school, outings etc. And shall post more about different tests etc.

Take Care xx
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