I’ve had a busy day today, involving penguins, experiments with making bread in a large saucepan (*Twinkle* knows how to do it, but being mid-way over the Atlantic she can’t really help me out), and study. And buying Bjork’s new album.
Anyway, that’s not what I’m here to tell you. What I’m here to tell you is far more important.
As you know only too well, I have temporal lobe epilepsy, and have had since I was age 16. It’s been controlled (to a great extent) by the daily intake of between 500mg and 2000mg of Epilim Chrono (I’m currently on 700mg daily).
I have had two major seizures (the last one being in the Spring 2005 exam period) and thousands of minor seizures over the past 13 years. As those who take Epilim will know, one of the unfortunate side effects is that it can cause liver damage, and thus I am supposed to have a liver function test every now and then. I tend to ask for one of these whenever my blood is being taken for any other reason.
Eight days ago, I wrote about the spate of seizures I’d been having following the Trailwalker event (link to that post). 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 about the possibility of using vitamins to help control epilepsy from anyone else. 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. Extraordinary.
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, especially nowadays. After all, if you exercise for one day you are unlikely to see a direct result – but over time the difference made to your health can be remarkable.
I have also always been somewhat suspicious of the synthetic vitamins on the shelves of Superdrug. I mean, how do you know what’s in them? I learnt something else recently too (thanks to my sister):
[A] primary difference between real full-spectrum whole-food vitamins and synthetic vitamins is that real vitamins contain the essential trace minerals necessary for the vitamins’ synergistic operation. Synthetic vitamins contain no trace minerals and must utilize the body’s own mineral reserves. Ingesting real vitamins does not require the body to deplete its own reserves of nutrients to replace any nutrients missing from the false vitamins.
(Oh, something else I learnt the other day: vitamin C is actually white, but came to be thought of as yellow or orange due to the colour of the glue used to stick the supplements together!)
It’s only been in the past year, talking to my sister (a qualified nutritionist) and other friends who have studied nutrition for several years that I have started to appreciate just how important it really is.
Whilst I would never recommend that anyone reduced their dosage of or stopped taking their prescription meds without consulting their doctor first, I would encourage others with epilepsy to at least try upping their intake of vitamins (B complex in particular), and see whether or not it helps.
This is a tremendously exciting discovery for me, and I will of course keep you informed of the progress of the experiments I conduct upon myself!
p.s. A good place to start for more info regarding alternatives to AEDs can be found at: