Posted by: docdenbow | September 11, 2011

Epilepsy – My Story


This is the most personal thing that I have ever written, so if you have got this far then please do me the honour of reading it all………………………………………………….

Those of you who know me, via my Twitter or Facebook postings, or perish the thought in “real life,” may be aware that I suffer from epilepsy. I prefer “suffer from epilepsy” rather than epileptic as I see epileptic as an adjective and not a noun. But hey, that’s jut spilitting hairs.

So what is epilepsy? Clever people say it’s a defined as a tendency to have recurrent seizures.  It’s generally caused by a disruption in the way brain cells communicate with each other. This disruption results in the brain’s messages going haywire.

There are quite a few different types of epilepsy, not all of them cause you to lose consciousness and convulse all over the place. For example, you could remain awake with this type of epilepsy. On the other hand you may not be aware of what is happening. It could be that people with you are unaware that you are having a seizure.

M y epilepsy has a big and scary sounding name – juvenile myoclonic epilepsy or  JME, if you like acronyms. It usually affects girls more than boys, and starts at any age between 8 and 26.Well I’m a chap and it’s been with me in one form or another since I was about 2 or 3. So much for being a typical case. Anyway that’s where the juvenile bit comes from. It doesn’t mean that sufferers haven’t grown up – (well in my case it does) it refers to the time in life when the symptoms actually start to show.

The myoclonic part comes from muscle spasms that occur. Everybody gets a myoclonic jerk from time to time – even you reading this. Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm. But, in the words of Hitch Hikers Guide To The Galaxy, Don’t Panic. Having hiccups doesn’t mean you have epilepsy! What I used to get was to sudden jerks of the muscles in the arms. When it happened it was always in the morning within a couple of hours of waking up.

The epilepsy bit comes from the fit or seizure itself. Usually with JME the type of fit or seizure most associated is the tonic clonic seizure – or “Grand Mal.” I guess that’s French for “Big Bad.”  And believe me they are bad. You may have encountered someone having one of these seizures or coming round from one and supposed they were pissed or some kind of drug addict. That may well be the case – but please if you see someone in that state don’t look the other way – check to see if they’re okay, or even call ambulance. We all carry mobile phones these days. Most people are very kind and in the past I have been really grateful of the kindness of strangers who have helped when I have been helpless.

I also have photosensitive epilepsy (PSE) which is type of epilepsy in which fits can brought on by flashing lights, bold, regular patterns, or regular moving patterns like on an escalator. So I have got more or less the full set. Wearing polarized sunglasses or covering one eye can nullify the effects of these lights so if you see me wearing sunglasses when it’s not exactly bright I am not trying to look like a Blues Brother but merely erring on the side of caution.

In my younger days the myoclonic jerks in my arms (that’s where I got mine) were always the precursor to the “big one.” It would start with really violent jerks of my arms with my hands turning into fists which then came up my temples. That much I was aware of. From there from my point of view it was “lights out” and I would collapse in a twitching convulsing heap thrashing around on the floor and occasionally weeing myself – not dignified at all!

I fortunately haven’t come to any harm when I’ve had these seizures, but I’ve had a few near misses like when I was banging my head on floor between the old 58 bus stop and British Home Stores in Wolverhampton when I was about 17. A trip to the Royal Hospital in Wolverhampton swiftly followed where I was X-Rayed for a suspected broken cheekbone given the fact that half my face was black where I’d been smashing it into concrete. It was just bruising – but bloody painful. I’ve also split a large cut glass ashtray in half with my face – gutted about that it was Royal Brierley Crystal. I’ve also had a near miss with a metal framed computer desk that I was building for my kids (who thankfully are epilepsy free). Half an inch lower and I would have taken my eye out. Just very lucky I guess.

Anyway I’ve been on medication since I was about 16 and saw a consultant. Epilim, which was then a new “wonder drug”, was prescribed. It didn’t make a fat lot of difference over the next few years due to my love of Banks’ beers and a tendency not to take said Epilim. Like a lot of kids in my position I didn’t want to even consider that I had a problem, or was different to my mates. I did, however, have enough sense to avoid the “waccy baccy.”

Anyway over the years I’ve become more responsible with the medication, if not the alcohol I was drinking and the number of fits I was having gradually subsided. I got my driving licence back having had the DVLA take it off me and went fit free for about six years.

Then out of the blue I had a seizure. This came without warning (when I was building the computer desk for the kids), no myoclonic jerks, no aura that gets mentioned by some suffers one minute I’ve a screwdriver in hand next minute – half an hour really – I’m picking myself up off the floor with a nasty cut above my eye and very sore head where once again I’d been banging it on the floor. I duly surrendered my driving licence and headed off to my GP who frankly seemed to know less about epilepsy than me and booked it down as “one of those things2 with a non-committal shrug.

Fast forward a year, no problems and I got my licence back. Three weeks of driving and whilst sitting watching Rugby on the TV – boom another one. It didn’t even know. The wife heard a thud and when she came into the room from upstairs I had booted random bits of furniture around. She got me upon to the settee chucked a blanket over me and I slept for quite a while. Bye bye driving licence again.

Three weeks later I’m riding my new mountain style urban bike when I went arse over tit into some bushes. I barely remembered getting on the bike let alone the ride in the ambulance to Swansea’s Singleton Hospital.

This was getting serious; all my fits were in the mornings in the past, now they were coming later and later in the day. Thanks to works perks I got to see a consultant privately in June 2007. He explained the type of epilepsy that I have (JME), gave me serious ground rules about drinking and upped the dosage of Epilim that I’m on to 2000mg a day. That’s a pretty humungous dose and he also told me to take them at a different time of the day. I’ve just noticed that I’ve mentioned drinking a few times. Don’t get the impression that I was a major league piss head, I just drank more than I should have given I have epilepsy.

After that I felt fine. Reassured by a consultant I trusted implicitly. For the next for years I was absolutely fine. No problems at all. I was sticking to my limit of 2 pints of weak vile beer when I did drink and everything was great. I got a new car and started to feel good and confident about myself. I even got to meet my hero Glenn Hughes after his gig in Birmingham which I have written about elsewhere on this blog.

Then on Sunday 11th July 2011 I had another fit. It was about 7 o’clock in the evening, I’d been off work for a couple of weeks on holiday. All I’d done that day was the usual Sunday chores – I usually cook an evening meal on Sundays – so I was well fed. I’d not even had my statutory 2 pints the night before and it was just an ordinary day. True I was fiddling about trying to install Linux on a netbook, but hey I work in IT so that’s not unusual.

Bye bye driving licence. This time I felt bereft. Depressed and betrayed. This just wasn’t fair. I’d done everything I was told too. Everything. This epilepsy was mutating and had come back to bite me. I hung on to what my consultant had told me. The fits can scramble your brains and your thought processes. I just hung on that whilst I waited to see my consultant again. I felt very nervous and brain didn’t seem to work properly. I went to Travis Perkins with my daughter to hire a tool for a workman laying slabs in her garden. I stood in front of the salesman asking for a “cutty thing” for coving! Eventually I had to show him what we wanted – a disc cutter for coping stones and paving slabs.. I laughed it off but secretly I was scared and confused. Besides that when I took the fall I had really hurt my spine. I found it hard to stand up of even sit or lie down.

I just wanted sympathy but my wife is not really one to hand out bucket loads of sympathy, she’s more the type of “pull yourself together man” type of woman. My oldest daughter (22) is not too far off that – she’s totally pragmatic. My youngest (20) was very upset and very sympathetic but I didn’t want her to be upset.

2 things got me through. One is our puppy Daisy – who gives unconditional love and cannot fail to make you smile. The second was a Direct Message on Twitter I received from Glenn Hughes after for some inexplicable reason I sent him a Direct Message telling “The Voice of Rock” that I’d had an epileptic fit. The swift reply put a smile on my face. (And Glenn if you do read this far if the offer still stands Cardiff in November would be good! I’m up for it! Plus you promised me a latte and a good ole natter!)

I eventually saw my consultant in early August and told him that I wasn’t convinced that the medication was working anymore. He reckoned it was as it had completely eradicated the myoclonic jerks. (Remember them?)and my fits were different. Shorter and generally less severe. He also stated unequivocally that we had nowhere to go in upping the dose. He proposed a combined therapy, Lamotrigine (Lamictal) to be the new drug to go on top of Epilim. I suggest that you don’t Google it as if you follow the links to the possible and very rare side effects you will feel queasy. I decided after seeing him to stop drinking altogether. So now I’m on Dandelion and Burdock instead of pints of Brains Dark.

I feel happier now than I have done in years. If I have another fit, I can now accept it. The consultant sees no reason why should have a fit or  why I shouldn’t drive again in the future provided I can stay fit free for a year. In fact he even stated that if I went back to him carrying my driver’s licence he’d happily jump in a car with me and let me drive up the M4 to Cardiff at 70 mph such was confidence in me and the treatment.

Interestingly as a footnote Lamotrigine is also used to treat depressive episodes in people who have bipolar disorder. I wonder whether I have been depressed for years hence my mood swings and I’m getting a really positive side effect from this new medication. Just a thought.

Hope you’ve all read this far and you don’t think this is self indulgent twaddle. If you do read it message me please or leave a comment. I’d love to hear what you think positive or negative.

Ciao for now

Denbow

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Responses

  1. Nice Blog mate, Ill be the Jake to your Elwood in work, my my shades 🙂

  2. Hi Den, sorry to hear of your difficulties but I’m glad things are looking up. By the way this is an incredibly well written piece. Hope you get to meet up with Mr Hughes again 🙂

    • Thanks for your very kind comments – meeting GH again in Cardiff !

  3. Yep. That. Well writted.

  4. It’s not self indulgent twaddle. It was very honest. But remember, it’s your blog so you’re allowed to be self indulgent from time to time. Epilepsy has rarely come up in my life. I’m lucky not to have suffered from it. I have a cousin who has it and he’s done what you’ve done, taken the advice of the doctors and gotten on with it. It’sll you can do. But I hope the symptoms and the seizures get less and less with time mate. Up the Wolves. 🙂

    • Hi mate, just added a new posting – have a look

  5. I have a friend with epilepsy so your story sounded very familiar. Read this to her and it made her feel better to know that she isn’t the only person who has had problems. She also had to take numerous drugs before finally getting it write but, touch wood, has not had a fit in ages. 🙂

  6. An extremely well written piece Denbow. Informative, educational and enlightening! Hope all continues to go well in the future… See you in the Vivs for a dandelion at some point…

  7. Never really understood what the causes of epilepsy were or what life must be like to be a sufferer.Interesting stuff and i’m full of admiration in how you cope with life with this hanging around in the background.All the very best for the future and may you have your driving licence for many years.

  8. Interesting post. Hope your new meds continue to do the trick for you and you’re back behind the wheel again soon, chap.

  9. Wow. I had no idea. Thanks for sharing. x

  10. What a moving blog. I salute you for being so open and for talking about what must be a very private thing. I pray that your meds now keep you fit free for a lifetime but I know that you’ll be happy with a year at first to get mobile again. I bet Daisy is a massive help, their unconditional love is healing in itself. Take care friend……. 🙂 Claire x

    • Thanks for your very kind comments

  11. The good ol off and seizures where you get to drive and then you don’t. Been there a few times myself. Right now my seizures are back in remission as they have been for almost 2 years now. Hopefully this time they don’t come back now that i’ve add another drug.

    -Mike

    • Hey – I’d like to think I’m sorted now, like to think but only time will tell
      Good luck to you!
      Denbow

  12. […] and for a couple of months I wrote bugger all. Then in September I wrote something deeply personal Epilepsy My Story and somehow a by product of this was that I found my *voice.* So from then on I have written, […]

  13. Nice idea for a blog. Am starting to come off my medicine since I had my surgery for epilepsy last year. This reminded me what it was like having it for 13 years.

    • Hi Cat

      I seem to be okay now as of 30/05/2014 and hope to stay that way forever.

      I really and truly hope that the option you have chosen helps you.

      Denis

  14. Hey Doc another well written and very honest account. You are one brave dude. All the best to you and yours.


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