I was 16 years old when I was first diagnosed as having epilepsy. For a couple of months I’d been experiencing “dizzy spells” several times a week, during which I felt as if someone had muffled my senses. My vision became blurred, my balance went wobbly, and I was unable to say anything that could be understood. These episodes would last for perhaps 10-15 seconds – most of the time those around me would notice absolutely nothing, except that occasionally I may stop talking mid-sentence.
It was in the autumn of 1994 as I was studying for my A-level exams at the Hereford Sixth Form College that I stayed over at a friend’s house. That night I didn’t sleep at all well, and the following morning I felt very strange when the alarm clock went off. It was a little like those times when you wake up from a vivid dream and it takes a few minutes to reassure yourself that the world you’ve been in was only a dream. Also, my tongue hurt as it had never hurt before. I was confused, and so asked Jo who’d been sleeping in the bunk above me if she’d noticed anything during the night. “Yes” she told me. “At one point you made quite a lot of noise and started thrashing about- but then you just went back to sleep.”
I told my mum and dad about this, and they immediately recognised the signs – there was a history of epilepsy within the family. Also, at the age of 6 I’d had a few “dizzy spells”. Tests at the time showed nothing unusual but a few “adult brain waves”, and after a couple of months I was back to normal without any treatment.
As we all know, the brain is essentially a vast network of minute electrical contacts, with electricity flowing around making and breaking thousands of these contacts every second. An epileptic seizure is a result of an electricity storm within the brain, during which hundreds of “short circuits” occur and there is a complete loss of control of bodily functions. There’s a myriad of possible triggers – for some people it is things such as televisions or flashing lights - but in my case it was excessive stress or tiredness that led me to have seizures.
My condition had lain dormant within me for 10 years, and was triggered (I believe) by the immense pressure that I felt when I started to attend the Sixth Form College. My education at the Waldorf School had been an immensely positive experience. I had come to learn and understand so much- and now I was faced with an education system where the preferred learning method seemed to be to cram as much information into my head as possible and spit it back out on paper in an exam.
On top of this pressure came the perceived pressure from the college Careers Advisors. I felt that I was expected to decide upon my entire life’s vocation within the space of a few months. I was to go to university, get my degree and settle down into a 9-5 job where I would stay until I reached retirement age.
When I began to have multiple minor seizures (petit mal) during my waking hours I realised that this wasn’t the same as when I was 6: these seizures were much more frequent – I needed to get myself checked out. Not long after it was confirmed that I had Temporal Lobe Epilepsy.
Through conversations with consultants I was eventually to learn that the major problems for those with the condition is not necessarily the epilepsy itself, but rather the side effects of the drugs and the social issues that go with the condition. The first thing I was faced with was having my driver’s license revoked – just three days after I’d received it through the post! The second was the stigma. Not many people around me were clued up on epilepsy, and there was a tendency to mistake it for some kind of disease which leaves people fitting uncontrollably every other minute.
Whilst of course some people do suffer from multiple Grand Mal seizures during their waking hours, the majority of those with epilepsy have far milder cases. I only succumbed to the perceived social pressure to hide my epilepsy from others once by withholding the information on an application form for a job in a Supermarket – I was sure they’d reject me out of hand if they knew the truth. I have since learnt that the only person who had an issue with it in that situation was myself, and I have never felt the need to lie about it again. All in all it didn’t take me too long to accept my epilepsy for what it was, and in fact I decided to feel that I was actually special rather than being worse off for having the condition.
The problems really started for me when I was put on medication to control the condition. Unfortunately, there’s no easy way to find out which drug will suit an individual (at least that was the case back in 1995), so it’s a case of trial and error. The first one they put me on was Tegratol, a drug that that calms the brain when it’s heading for an electrical overload.
Tegratol really changed my life.
The first change was in my personality. I became very very bad-tempered. I felt tired, and lost my sense of humour entirely. This coincided with my college exams, resulting in what became a completely untenable situation – I flipped. The lack of support from the National Health Service at that time didn’t help – I was referred to an epilepsy specialist in Birmingham, but would find that he’d had to go out on a home visit when making the trip to Birmingham to see him. I recall on one trip being seen by a nurse who knew nothing of my case history, and just hit my knee with a hammer time after time.
When it finally became clear that Tegratol wasn’t doing me any favours, my medication was changed to Epilim (sodium valproate), and I found that my true personality gradually re-emerged. However, by then I’d had enough of the National Health Service – and enough of my mystery consultant! I simply decided to get on with my life, take the tablets I was prescribed and look no further into my condition.
By now I desperately wanted to leave college, and started to entertain the idea of international travel, something I’d long dreamed of. It was going to take a lot of courage to completely turn my back on my life’s plan and routine as I knew it. However, the craziness that the epilepsy had created I was given that final boost needed in order to write the word “Fish” a number of times on my Theology exam paper (a reference to Red Dwarf of which I was a big fan), stand up, and walk out of college – and out of my formal education (for the time being: I was to return to higher education 8 years later).
I truly feel that had I not had epilepsy I would be a very different person today. As it was, my condition led me to question the path that had been laid out before me, in addition to giving me the strength needed to challenge societies rules that I felt were binding me so strongly. For the first time in my life I felt that I had the power to shape my future.
Had I not had epilepsy, who knows, I may well have gone on to university and obtained a degree in a subject of marginal interest to myself. Perhaps I would have secured a position within a company that promised lots of money, for at that time that was what appealed to me most.
I was very fortunate to see a top specialist a couple of years later. Rather than hit me on the knee with a hammer this chap just wanted to talk. Talk about my feelings regarding my condition, my history, my hopes and my dreams. He expressed his admiration for the manner in which I was dealing with the condition, and reassuring me that I was OK to continue to gradually reduce my daily intake of Epilim – something I’d started doing about 12 months after the initial craziness had passed. He suggested that as I got older, so I might be able to give up the medication altogether as the condition faded naturally.
By early 2003 I was only taking 1/10th of what I’d originally been prescribed, and the obvious side effects limited to my becoming totally drunk on one bottle of beer. However, I was always suspicious that the drugs were also partially responsible for my rather crazy nature at times. I was yet to know who the ‘real’ Joseph Tame was.
In February 2003, after 8 seizure-free years, my epilepsy reappeared overnight. I was in Japan at the time, just coming out of an incredibly stressful period of my life that had lasted for about 6 months. Initially, I refused to accept that the “dizzy spells” were epilepsy. Surely, they couldn’t be, not after all this time? I’d gradually weaned myself off the drugs, and was finally down to 200mg of Epilim Chrono a day. I’d been on that dosage for over 8 months, and was planning to give it up altogether within a few weeks.
Being in Japan, it was not so easy to get it checked out, and besides, I knew that I’d be returning to England soon where I could see my regular doctor. So, I ignored it – but within two weeks of the first “dizzy spell” I was having over 10 a day.
In the March 2003 edition of The Daily Mumble I wrote:
“Generally, I can tell when I’m going into one of these spells – my head will start to feel mentally tired … My sight then slips off to the left or right, away from whatever I have been focusing on. I’ve noticed that I can be looking at pretty much anything for this to happen, whether it be a computer screen, a street sign, a blank wall or the back wheel of the bicycle in front of me – i.e. it doesn’t seem to be triggered by light. There then follows 5 – 15 seconds of general confusion. I can’t focus my eyes – yet I feel that this is not actually a physical problem. Don’t ask me how or why, but I kind of feel that my eyes are physically focused, but my brain is somehow scrambling the signals when processing them. It’s all very strange. I feel that if I wanted to, I could simply force myself to snap out of these spells (as one can snap out of a daydream), but, for some reason I am very reluctant to try this. Once again don’t ask me how or why, but I feel that if I was to force myself back to reality rather than letting whatever it is run its course, I would somehow damage my brain, kind of like a power overload. Having had/as I have epilepsy I am only too aware that the brain is simply a delicate network of electrical contacts, a network that can easily become agitated by stress etc – I don’t want to push my luck. By the way, none of this is based on scientific theory – it’s merely how I think and feel.”
Eventually I did go to my local hospital, where a very kind Japanese doctor prescribed more of the drugs that I was about to run out of. I incresed my daily intake from 200mg to 900mg. Within a week the “dizzy spells” numbered only three or four a day – two weeks later they were gone altogther. This naturally confirmed that it was epilepsy – it was still with me, subdued by the medication.
As mentioned above, in the months leading up to the re-occurence I’d spent a lot of time feeling extremely stressed due to a turbulent relationship. When that relationship began to settle down, so I relaxed. My body then said, “OK Joseph, you’ve been holding it together in order to get through the hard times, now you can relax and let it all out” – and so the epilepsy had finally showed itself.
The long process of weaning myself off the drugs began again. I was careful to control my stress levels, and tried to ensure that I always got enough sleep. Things settled down, and life returned to what had been normal for me.
My second Tonic Clonic (Grand Mal) seizure
On the 14th of May 2005, after 10 years without a tonic clonic (Grand-mal) seizure, and over two years since a minor seizure, I woke up concussed, with a bitten tongue, limbs that felt as if they’d been torn from their sockets and bleeding feet. I wrote the following on my blog:
I had rather a traumatic night last night. It involved 1) our flat being burgled (I heard the burglary but failed to grasp what was going on) 2) I had my first tonic clonic (epileptic) seizure in over 10 years last night whilst asleep, resulting in a) a harshly bitten tongue b) toes bleeding due to a lack of skin due to prolonged rubbing against bed frame c) 4 limbs that all feel as if they have been dislocated d) prolonged concussion.
I couldn’t think at all, didn’t know what was going on, but eventually realised, called mum and dad who called NHS Direct who then called the paramedics for me. Two ambulances turned up within minutes! They took me to A & E where I was checked over, and despite superficial injuries I should be ok, but I have to take it easy. great timing, what with exams next week. I’m absolutely wiped out, despite having slept all afternoon. Limbs weigh an absolute tonne. I really never thought I’d ever have another tonic clonic seizure. off to see my GP tomorrow to discuss upping my medication.
This is all a major pain in the bum, especially with an essay due Wednesday, an exam Thursday, another exam Friday, a third exam the following week and a final exam the week after, oh, and then ten weeks in Japan. Probable causes for this seizure: – sleep deprivation. I was up very late on Friday doing all my homework (bed 3am ish), and was then woken by the phone at 5.30am. Then yesterday i was in the library until 2am-ish, stuck in front of a computer for 12 hours. Once home, I went to bed, but was woken at about 4.30am by my flat-mates who had discovered that we had been burgled. After about an hour of sorting that out with the police and security, I went back to bed – and it would have been then that I had my seizure. Coupled with a lack of sleep has been the stress, associated with exams, and more recently returning to Japan. It’s been a recipe for disaster really.
There then followed a few months of unrest. My daily intake of Epilim when back up to 700mg, causing extreme tiredness. Then, 3 months later I found myself having up to 40 minor seizures a day. I identified the triggers as being the tiredness and stress resulting from my returning to the UK after 8 weeks in Japan. Back again to a sharp increase in Epilim, followed by many months of gradual reduction.
Replacing prescription drugs with organic supplements
By January 2007 I saw my epilepsy was once again under control – I just took my meds daily and got on with life. Despite epilepsy no longer having an impact on the way I lived, I didn’t like the idea that I was having to rely on this artificial compounds. I was a bit of a hippy at heart and wanted my body to be free of that kind of stuff.
On the recommendation of a friend, I’d started taking some powerful 100% organic supplements – vitamins, minerals, phytochemicals. Whilst my friend had suggested they might help with my epilepsy, I had no doubt in my mind that they wouldn’t. For the first few months I continued to take my Epilim alongside the supplements, gradually reducing the dosage. I was stable – perhaps my epilepsy had disappeared.
In Spring 2007 I took part in a 100km non-stop hike to Mt. Fuji in aid of Oxfam Japan. Following the Trailwalker, I found myself so exhausted that I couldn’t even be bothered to take my supplements, although I did take continue to take the very small dose of Epilim. What followed was totally unexpected – the onslaught of multiple minor seizures.
Eight days later I wrote the following on my blog:
Last week, I wrote about the spate of seizures I’d been having following the Trailwalker event. I couldn’t think of any changes in my lifestyle that might have brought it on – except for the fact that I’d stopped taking my organic multi-vitamins. I vowed then to ensure that I didn’t miss a single dose, and to see whether this effected my seizures.
Well, I must say, the results have been absolutely remarkable. I have hesitated to write it here until now as I could have just been having a lucky couple of days – but now I have no doubts. Within 72 hours of starting back on my vitamins (a combination of vitamins / minerals / phytochemicals / additional Vitamin B complex), my seizures stopped. What impressed me even more was that the weekend saw me in Prime Seizure Mode – that is, a Friday night with no more than 15 minutes sleep (on the bus), Saturday concentrating in Japanese all day, and then after that a party with rather a lot of alcohol which went on until 3am! I was then up about 4 hours later for another full-on day, which only came to an end at about midnight after the journey back to Tokyo. If I was ever going to have a seizure, that would be the weekend to have one!
Up until today, I had never heard anything from a medical source about the possibility of using vitamins to help control epilepsy. It was purely through looking back on my own experience that I came to think that there may be a connection – thus I am more than satisfied that this is no case of the placebo effect.
Tonight though, it did occur to me that others may have found relief this way. A quick Google Search on Epilepsy and Vitamins revealed that yes indeed, they had. A lot of people.
Why has this possibility never been mentioned to me before by any of the many specialists I have seen? Possibly because the sad truth is that Doctor’s in the UK get virtually no training when it comes to vitamins & minerals – hard to believe, but true. They don’t do “staying healthy”, they’re only trained to pick up the pieces when everything falls apart – something which I think they do a very good job of (except when it comes to epilepsy…!).
This is, of course, great news for me. I loathe taking those purple tablets that work against my body’s natural functions, and are possibly damaging my liver. They’re also a pain in the arse when it comes to international travel / living abroad for long periods of time. Here I now have a safe alternative – in fact not only is it safe, it’s organic too!
Of course there’s no guarantee that I can stop taking Epilim altogether, but I’m going to experiment with reducing my dosage as I have done in the past (that’s how I got down to 700mg from 2000mg). 13 years of epilepsy and no-one ever mentioned this possibility.
I guess it didn’t help that my own attitude towards nutrition & supplements was not all that great. The thing with supplements is that it’s very unusual to see any sudden change resulting from their intake – so how do you know if they’re making a difference?! I appreciate now that this is flawed thinking.
A few months and several experiments later I had established a firm connection between taking organic supplements, and not having epileptic seizures. I was able to quit Epilim altogether, and to this day control my epilepsy in this manner.
I’m not a medical doctor, and everyone’s epilepsy is different, so I wouldn’t recommend others follow my lead without first consulting their medical consultant. All I know is that it worked for me, and I’m extremely grateful for that.