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Epilepsy – My Story

April 7, 2012

Time for something personal, inspired by my friend Angelika’s powerfully moving and informative film which I strongly urge everyone to watch.  For anyone with epilepsy, this may be triggering, and I intend this to be deeply personal so please, anyone who knows me personally, be aware this is my own naturally biased perspective and no criticism, if it is perceived, is intended.  Many thanks to my mum who kept a very detailed medical history of which I now have custody.

My first seizure happened just over one month after my first period, at age 11 years and 9 ½ months.  I was sat having breakfast and have a vague, fleeting memory of being loaded into an ambulance, and then being rushed into Emergency worrying about the fact my nightshirt was very short and I might be over-exposed.  My dad had found me and thanks to his early years working in the Nottingham mines as an electrical engineer he had received first-aid training in what to do in the case of seizures.  According to my mum’s medical notes, I had had slight headaches for the previous four days, but the hospital allowed me home after 2 hours.  I have very little memory of this time.  However, an EEG on 14th March (2 ½ weeks later) showed abnormal brain waves but no treatment was prescribed.

We then went on holiday.  We stayed in a caravan park, and I had a seizure, again at breakfast.  I apparently was prescribed 1 strong librium and 2 days of weak valium by the site doctor – again I have little memory of it.  I know I was at a disco on the campsite with flashing lights the night before, but it was only later in discussion with GPs that possible causes were discussed (briefly).  At this point, there was no discussion, with me or with my parents.

The third happened in the evening of my first day back at school in the second year of secondary school (now Year 8), which was also the first day of my period, whilst watching TV.  At this point I was prescribed the medication I have become very familiar with; sodium valproate.  The initial dose was 200mg, twice a day.  Still, nothing discussed with me, but I was 12 and it was 1984; the GP’s word was (and still is) law, and you just trust them to do the best for you and to know the best for you.

The dosage didn’t work.  I had another seizure on 25th September whilst on the toilet, having just been reading (which for me was very normal, I almost always have my head stuck in a book).  Another one followed a month later, and my dosage of medication was upped to 3 tablets a day.

Then followed the most memorable, and the most affecting seizure for me personally, that I had.  I was doing gym in school and unusually, the entire year of girls were together.  Normally there would be more streaming, but we were doing obstacle courses and every girl in my year was there (I think it may have only been my side of the school; but this still meant it was my entire female peer group).  I was actually trying hard.  I just finished my run and promptly collapsed into a seizure.  All I remember is waking slightly as I was rushed from one end of the school to the other, in a wheelchair, in my PE kit (tight top, short skirt, I was not skinny) having drooled all over my face, past older children, to the nurses room.  I was aware of this, even then.  It stayed with me, and has done so very strongly ever since.  I was left feeling very tired, and I was sent home.

Regular visits to the hospital specialists where I was weighed, blood tested, and asked about my history with regard to seizures (have I had any? How do I feel? – I always felt ‘fine’ and didn’t know what else to say as nothing was ever actually spoken about.  How would I know what to ask?), would be a feature of my adolescence.

I had no seizures for 2 years, so the decision was made to reduce my medication.  By Boxing Day 1986 I was entirely off medication.  All was well until October of the following year when I was practising my English Oral exam talk with my teacher.  I had decided to do a talk on epilepsy, and promptly gave a practical demonstration at the end of the speech.  This was to be my first attempt to bring my condition into the public arena and address the issue, which had never been referred to.  It had always seemed, to me, to be a shameful, humiliating secret.  I thus found out that my teacher, Miss Grimley, who had only been qualified for about 2 years, had epilepsy herself and knew what to do.  I got an ‘A’ grade but was not allowed to present the talk to the students “in case it happened again”, which did nothing for my belief my epilepsy was something to be hidden and never spoken about.

I then had three fits in the next month, once in a drama class, once before Sunday lunch whilst watching TV and one in the evening whilst reading the paper.  I do not remember the first two at all, but do remember the latter as I insisted on going out with my friends at 8 pm, having recovered quite quickly.  I was also stubborn, and by this point the epilepsy was affecting me personally in my development and body image very badly.  Of course, I did not tell anyone this, nor did I understand it for quite a few years.  I was put back on the same medication at the same dose as before.

Again, I had no seizures for 2 years, so as was considered normal practice I was again weaned off the drugs.  8 months respite and I had two seizures in 2 days.  Once whilst reading and once whilst studying at my desk (I was doing my ‘A’ levels at this point).  I was put back on the medication slowly increasing to the 3 a day, and I have been on this dose almost continuously ever since.  That’s 20 years of continuous medication, 29 with breaks, on sodium valproate.

Sodium valproate is no longer prescribed as a first choice to women of child-bearing age.  This is because it causes severe foetal abnormalities.  This was apparently not known when I was first prescribed the drug, or so I have been told by later GPs I have had.  I consider myself very lucky that I have always known that I do not want children, as otherwise this could have caused considerable problems.  Myriad other side effects of sodium valproate, however, were known to specialists.  When I was 18 I asked my GP about them, never having been told about them before, nor were my parents.  I have a strong and clear memory of the GP looking the side-effects up in the British Medical Association text book.  They included increased appetite and weight gain and potential liver failure, which explained why I was weighed at the hospital visit I went to every six months for my entire school career – being removed from lessons very visibly, clearly marked out as ‘different’ as if my very public seizures hadn’t already done this.  I remember my parents and sister not believing me when I first told them the weight gain side-effect.  That had a strong affect on me; I understand it was because the doctors did not tell my parents anything, nor did they ask.  They are of the generation where the doctor prescribed and the patient obeyed.  Side effects and potential psychological impact was not only not considered, it didn’t even occur to them.  However, to not be believed has led to recurring nightmares, in which I know the truth and try to tell people but am constantly, aggressively denied and called a liar.  These nightmares still continue today.

There is no dignity in seizures.  My seizures were what was known as ‘grand mal’, but are now known as tonic-clonic seizures.  This means a total loss of consciousness, full body shaking and trembling, occasionally drooling and sufferers have been known to lose control of bodily functions (although this latter distressful symptom didn’t happen to me).  The loss of consciousness, for me, was anything between 2 to 5 minutes.  To know all of my peers had seen me like this, including older students to whom I looked up, was extremely humiliating.  Worse, it was never mentioned.  Not once in my entire school career was this ever mentioned.  I was left believing I was a freak, separate, untouchable, and unwantable as well as ugly and inferior to my sister and to my female peers.  I tried to compensate by achieving well in school, and by self-denial of my inferiority by projecting a strong independent individuality, and I think I was successful at this.  Certainly, my family and friends had no idea I felt like this, and may to this day still not know.  However, I had no sense of my own identity at this stage, and saw myself only in comparison to my sister – our friends were ‘her friends who put up with me’, she was the ‘pretty and popular’ one, and intellectually our exam results were almost exactly the same (and remained so throughout our scholastic careers).  I had no identity other than that which I leeched off of her.

She was never anything other than supportive, and had no awareness of any of this.  I hid it well, from everyone.  But as we all know, that really does come and bite you in the arse in the end, and it really did bite me, hard.

I started this journey exactly one month after my first period, and had an identical twin sister without these problems to whom I constantly compared myself.  I gained a lot of weight, having always been 1 to 2 pounds lighter than her beforehand – I didn’t eat any more than she did at the time, so can only presume the medication caused this.  My physical shape and differences to my peers were exacerbated and exaggerated, and this all occurred at exactly the same time as adolescence.  My newly-developing identity and self-awareness as a woman, and all the pressures surrounding gender norms and stereotypes that comes with, were strongly impacted.  I am not surprised, looking back, that I became utterly screwed up.

You might think that finding the right dose of medication to control the seizures would be the end of the story.  Not the case, the inner journey, the mental impact of being diagnosed, of the seizures, of the side-effects, of the lack of control and information, may never stop having consequences for me.  It was not until I found the Hounds of the Morrigan re-enactment group in my final year of sixth form, and started a hobby of my own separate from my sister, that I actually started to develop a sense of my own identity and my own worth.  That group saved me far more than any of them ever realised, but my journey to full mental health took much longer.  I still did not understand the impact of my epilepsy, that took much longer.

I did not see someone have a seizure until I was at university.  In my first year, a person staying in my corridor at my halls of residence while I was away died having a seizure – he fell off the toilet and his airway was blocked.  He was found by two people who were staying in my room as I was away for the weekend.  I already knew of two people who had died having seizures.  I was aware of S.U.D.E.P.   I didn’t talk about it.  I saw an acquaintance have a seizure in a meeting of the Student Union and went into shock; the reality of what my peers had seen and of what I had looked like, and the dangers and reactions of those around ‘me’ smacked me in the face with such force I simply could not handle it.  I ran from it, again.

You can only run for so long.  I became increasingly depressed, cyclically and then permanently.  My self-image, my self-denial, my lack of identity, all not addressed, resulted in me being diagnosed with clinical depression and prescribed antidepressants, which I took for over five years.  Several different types of therapy and counselling until I finally found the right type and I eventually reached a stage of understanding and acceptance.  It doesn’t ever leave though.  I will always have problems using the singular personal pronoun (I constantly refer to myself as ‘we’), and I will probably always have a very warped view of my physical self.  But these are not unique problems, and I know that I am not the only person with mental sufferings, whatever the original cause.

It has ultimately made me stronger, more knowledgeable and more able to stand up for myself.  When I changed GP surgeries in 2006, a single blood test showed a slightly reduced amount of medication in my blood.  Instead of ordering a second blood test (the blood was taken in the morning, before eating and only shortly after taking my first tablet of the day) the GP put my medication up one tablet per day.  I was hospitalised twice with extreme migraine-like symptoms in short succession, and despite my then-fiancé and myself telling every medical professional that we believed it was a direct result of the increase in medication, not one medical professional listened.  We began to question ourselves and briefly planned to elope as we weren’t sure I would live to a wedding day (we were that scared and the pain was that bad – a couple of times my then-fiancé had seen me hitting my head on the wall to try and knock myself out, it was so painful), but stopped self-examining.  Instead, I got angry.  I took the insert from the medication, highlighted the relevant side effect and shoved it in the doctor’s face.  My medication was reduced back to 3 a day, and I have had no problems since.

My journey with epilepsy has been extremely complicated.  It has ultimately led me to be the person I am today, and I quite like that person.  It has had a direct impact on my self-image, my gender identity, my confidence, my knowledge and my strength.  Of course, I would rather not have gone through any of it, but if it meant I would not be empathic, understanding, a fighter and able to stand up for myself and others in the way I feel compelled to now, I would choose to go through the journey again.  I am aware that those of us living with long-term conditions will very frequently know more than the GP about the condition; this is only natural, they are not specialists, and cannot contain all the specialist knowledge on every condition there is in their heads, so I am now able to inform and discuss in a way that was unthinkable to my parents’ generation.

The fear of having a seizure never leaves me.  If I read or see something about epilepsy, I have the irrational initial fear that it may induce a seizure in me.  Every time I have a headache, I worry I might have a seizure, even though I know it won’t actually happen.  When I read or hear someone saying, as is common, “don’t have a fit about it” or something similar, my gut twists and I am apprehensive of being triggered and annoyed at the casual flippancy of the comment, knowing what I do about seizures.  I can’t handle being near strobe lights, and even flashing lights freak me out.  I have never worked out whether my appetite is real or medication-induced; to the point I can be woken in the night with hunger, or feel faint if I don’t eat, yet I am still and always will be overweight.  The potential to have a seizure is in everyone, but people with epilepsy have simply had that potential triggered.  Even if that trigger is known, unlike in my case, I know from speaking to other people with epilepsy that fear of being triggered simply by reading or seeing something about epilepsy exists.  It is simply something we all learn to live with.

Writing this blog piece has been unexpectedly painful and difficult.  I have been tearful at points, and I have a headache now. The reason for my having epilepsy was never diagnosed; it could have been starting menstruation and/or adolescence, flashing lights, tiredness, being bored, talking about epilepsy, over-exertion, headaches, anything.  It could even have been an accident in childhood; I only discovered recently that my mum blamed herself (I really hope she doesn’t still, I most certainly don’t) because of an accident when I was about 6 in which I was severely concussed.  The fact is no-one knows what caused it and no-one ever will.  It just is.  I have abnormal brainwaves (electrical or chemical, I don’t know) and these cause seizures unless I take my medication.  It has side-effects (the constant increased appetite is still with me) but ultimately I’d rather have those than have the seizures.  I can drive, I live what I think is a successful life.  I’m content.  What more can anyone ask?  In the final analysis, epilepsy has been fundamental in shaping who I am, for better or for worse.  If I like that person, which I generally do, then I have to accept my epilepsy within that.  That’s all there is to it!

http://www.epilepsy.org.uk/

http://www.epilepsysociety.org.uk/

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From → Autobiography

10 Comments
  1. Nicky permalink

    Interesting and indepth insight how epilepsy can affect people differently and shape identities in contrasting ways…..hmmm if you are interested I’ll memo you…N xx

  2. Thanks for sharing this, and sharing of yourself in this way. Your story makes me angry (once again–it’s a hair-trigger) at the astounding arrogance of doctors across the board, and all over the world. Just getting them to listen to what you’re saying is a Herculean task doomed to failure most of the time. I want to scream “I LIVE IN MY BODY EVERY SINGLE DAY!! Do not presume you know more about my lived experience than I do!” It’s so frustrating…you’re supposed to trust these people, without question, when they treat you like a liar, or hallucinating, at any rate. That doesn’t work in any other human relationship; I don’t know why they expect it to in the doctor/patient relationship.

    • I know what you mean, Kristie. Dealing with doctors can definitely be detrimental to your health!

  3. Jo Eden permalink

    Tina your piece is fantastic, inspiring! You’ve shown me things I never knew about you, now I know where your huge courage, resilience and empathy for others comes from. You’ve really given me food for thought about the condition of epilepsy too. x

  4. Kate permalink

    a beautiful story sweetheart. And reading the stuff about yourself and Lynne can I make something as crystal clear as I possibly can; I do most sincerely hope that you have *never* interpreted my comments to the effect of “But how can you and Lynne possibly be identical twins? You’re not identical” as in any way, shape or form a value judgement on your physical appearances. You are both to me equally beautiful, vibrant, passionate women and I happen to think you are both gorgeous in entirely different ways, probably more than anything because I have never viewed you as one unit, “The twins”, and so therefore am more likely to see the differences between you than the similarities. Thank you for sharing your story XXX

    • Thank you Kate, that’s really sweet. Don’t worry, either, I never interpreted your comments negatively. X

  5. Janice permalink

    I was prescribed Epival (the brand name for the same meds in North America) for bipolar disorder when I was 25. I gained 50 pounds in 3 months, literally blowing up like a balloon. When I mentioned this to the doctor who was ‘treating” me at the time, having read that it was a side effect, he sneered at me and said I was obviously eating too much and needed to control myself. I insisted that nothing had changed in my eating habits, and how could I possibly eat enough to gain 50 pounds so quickly, but he refused to believe me. (Same doctor who told me that if he were my husband at the time, he’d lock me in the house for misbehaving, so not a surprise really.) I eventually topped 300 pounds, but don’t know exactly how much I weighed because the scales stopped at 300. Luckily, I was able to go off the meds, by request, after about 5 years. Although I have lost a lot of that weight, I am stuck with lumpy deposits that are not at all normal and my health has never been good since starting the meds. So many people refuse to believe that the meds had anything to do with the weight gain and prefer instead to judge and smirk. I know what you went through with that disbelief, and yes, it can be debilitating. Certainly life changing, between the weight and the social consequences and disbelief. It certainly shapes who we are. And here we have yet another instance of our connection and shared experience. xoxo

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