MIKE DANCER – ADULT USING MODIFIED ATKINS DIET
With nobody to tell me what was actually happening, my imagination ran riot – I feared that I had a brain tumor. I paid for private diagnosis. I had to wait for a letter telling me the consultant’s opinion and I remember it taking forever for the letter to arrive. When I read it I fell to the ground in my second seizure, as it told me that I had epilepsy, it told me to get scans done and to surrender my driving licence. I was told to take sodium valproate pills day and night, with no mention of side-effects or alternatives.
Within a fortnight, I become so sedated that I had to move back to my parents, who had to care for me. The left side of my brain had some sort of blood vessel tangle in it – called a haemangioma. I had temporal lobe epilepsy (TLE). Great long words that would undoubtedly win scrabble but not a lot of help if you are so sedated from medication that you can’t remember the name of your own mother.
You are lucky if you can get to see an epilepsy specialist once every 12 months in the UK. If you are considered an emergency, you may get an appointment every 6 months. So I was taking epilepsy medication (which left me sedated) and I waited for months and months to see somebody. When further seizures happened, I was told to take higher doses and this led to side effects including food intolerance, insomnia, reduced immune system, poor memory, poor speech and disrupted hormone levels.
This went on for 7 years. I couldn’t get anyone to HELP me. I felt terrible – exhausted. I wasn’t eating – and what I did eat didn’t stay in me for long. I didn’t go out of the house and this was my idea of hell. I was invited by a friend to try an Indian approach to medicine called Ayurveda, which used a carefully prepared combination of food during the day – according to the individual’s
unique characteristics and requirements.
What it did demonstrate to me was that there were many approaches to medicine and health and I clearly wasn’t happy with the chemotherapy system that the NHS had used for the past 7 years on me – because it hadn’t stopped the seizures and had left me with appalling side-effects. My observations and request through the years had not been taken seriously and I wanted things to change – rapidly. waiting 12 months between meetings was just absurd – it would take thousands of years to get any reliable system working at that rate! So I approached the local drug rehab centre. I asked them about the approaches that were used to people coming off addictive drugs – and went away and adapted them to the Anti- Epilepsy Drugs (AED)s that I was taking. I came off all drugs at the beginning of December 2007.
At the same time a consultant who couldn’t figure out if I had Chronic Fatigue Syndrome or another illness that looked similar to it – such were the side-effects to the AEDs. When I confessed what I’d done to the consultant neurologist they were clearly annoyed and explained I faced progressive brain damage and death unless I immediately took the drugs again. They saw no reason for them to treat me unless I followed their instructions. That was the last time I saw them.
I came from the world of sports science/nutrition, so the initial suggestions of the ketogenic diet sounded like utter lunacy to me. They were the exact opposite of everything that I had been taught. They looked like a guaranteed fast-track to coronary heart disease. Hence I didn’t believe it would work… However I came across a group of adults (that didn’t have epilepsy) that were using the ketogenic diet and from the looks of it, they didn’t suffer from any difficulties with obesity and heart disease… They were bodybuilders. Bodybuilders use ketogenic diets when they reduce body fat, in preparation for contests.
I had to admit that the ketogenic diet was not causing the side-effects that I traditionally associated with a high proportion of dietary fat – they had incredibly low levels of body fat. I began to send messages to a bodybuilder called Dom, who had used a ketogenic diet to help prepare for a contest and he wrote some very impressive replies back – I then found out that he had a PhD in nutrition. After a few more messages, I found out that he was conducting research… into seizures (at a nanoscopic scale – that’s small enough to see molecules). The messages came thick and fast after that – and to give Dom his full title it is Professor Dominic D’Agostino. I thank my lucky stars I stumbled across him, because he could get hold of the most current research – and the people conducting it.
The other bodybuilder that saved my life was Adam Read. Of all the people I’ve met, I’d say that Adam has done the most to help me come to terms with having epilepsy. The focus is in my left temporal lobe which can leave me with speech problems. Adam had difficulties with writing – it’s been so helpful to find somebody that has honest empathy. Adam prepared for contests in the summer of 2008 and was following a ketogenic diet. He kept a food diary for the many weeks that he was doing the diet, where he meticulously recorded the food, the amounts and the times at which he ate the food. I borrowed this ‘food diary’ and then used it to construct the plans for a ketogenic diet of my own. Bearing in mind that I had been eating a diet of approximately 2,250 kCal/day consisting of 230/280/50g (protein/carbohydrate/fat) huge changes were about to happen – they altered to 4,500 kCal/day and 225/30/390g at this current time.
I’ve got used to having to provide lots of numbers for the people that insist on seeing evidence… I apologize if it seems inappropriate. The main point of these posts is to tell people that my seizures stopped for 15 consecutive weeks. I was utterly astonished and delighted. The initial ‘switch’ over to a low carb/keto diet was difficult – I felt so low on energy for about two weeks – but then things improved as my body adapted. Now I feel better than I did at any time during the eight and a half years that I’ve had epilepsy. Friends have commented on how my lucidity and drive have returned. One of the difficulties I’ve dealt with is that the classic Ketogenic diet consisted of recipes that were pretty reliant on dairy fats. During the time I took AEDs, I developed food intolerances to: wheat/gluten, dairy products, beef, alcohol, nightshade vegetables (potatoes, peppers, tomatoes), citrus fruit, cane/beet sugar, yeast, MSG, soya and chocolate. But as time goes on, you figure out inventive ways to get over these things. I actually like the food I now eat and don’t actually want to change it!
Everything is measured and recorded – it’s all in a computer: the last 8 months of everything I’ve eaten are in it. There’s been the occasional surprise seizure but things have been so much easier when they do come along, so all in all, it is well worth the organizational effort. It was such a fantastic feeling after I had met Emma when I realized that I wasn’t the only one. I didn’t know that there were any other people in the UK that used the ketogenic diet to manage epilepsy – and it is just fantastic to have discovered Matthew’s Friends.
27th October 2009
I thought I’d better update my ‘story so far’…
I have had a really good summer – the dietician that Matthews Friends put me in contact with – Sue Wood – has been like a guardian angel to me. She has managed to convince the consultants up at The National Hospital for Neurology & Neurosurgery to meet me. I also managed to get through to the national finals for natural bodybuilding, held up in Glasgow, at the beginning of October. So I went up to Glasgow for 4 days: it was the first time I’ve stayed away from home while on a ketogenic diet. Although it was difficult, I managed to do it – so it was a great achievement for me. Sorry – I didn’t win my age category in the competition. It was all a great laugh and apparently it was shown on some obscure channel on Sky! So there you go: Fame!
I discovered that a coconut product that I tried eating had inaccurate nutritional labeling – the hard way. The packet indicated that it had one gram of carbs out of every 100g… So I ate quite a lot of it. I then started having a lot of seizures – three in a row, the day before I went to Scotland… I was not on planet Earth. I stopped eating it and went back into ketosis and have not had any tonic-clonic seizures since. I note that their food labeling has changed to show that it has a higher quantity of sugar these days (7g every 100g). I’ve just been told that my ‘story’ will get told in a lecture, tomorrow – being given by Professor D’Agostino (a.k.a ‘Dom’) at the College of Medicine on the University of South Florida – shame I can’t drop in to listen!
My Experience of having a Seizure:
I appreciate that what it feels like – having a tonic-clonic seizure and being post-ictal is going to be very individual: everyone will have different experiences and will need different help. I have (left) temporal lobe epilepsy. I get tonic-clonic seizures. I know that the medical world can determine over 40 different types of epilepsy so I appreciate that the experience of having a seizure is likely to be very different according to the type of seizure a person has. I suspect that a seizure it is a highly individualized thing – and particularly individualized when it comes down to what it actually feels like to have a seizure – plus this can alter over time.
Here’s an account of what mine feel like in general:
One of the most frustrating things about the seizures I have is that they come with utter amnesia. I can’t remember a thing about the seizure itself. All I know is that for a brief moment I feel warm and a sense of familiarity about the exact scene that I am in – almost like I dreamt exactly this scene only a few nights ago and was now remembering it. Then there is a loss of consciousness – a bit like an approaching train – sort of rumbles in, in the space of about a second… and then I’m out.
For anyone watching, it is very different. I go into spasm – the muscles in by back and neck are solid. My eyes are pulled around by the muscles in my eye sockets. I let out a strange, long groan or scream. I stay like this for a couple of minutes. Then I drop to the floor – or sometimes I throw myself to the floor – like trying to score the winning try at a rugby match only without the ball. Then I start to convulse – mostly my neck and back as my limbs are still utterly solid. I bite my tongue during this (there may be blood) and my mouth foams. I may wet myself. This may last another couple of minutes. Then I utterly relax and fall asleep – I may snore – for 10 to 20 minutes.
I start to come around and can’t make sensible sentences – the bit of my brain that goes and find words in my memory banks is working faster than the memory banks themselves.
So I may appear to speak gibberish, until…
What on earth am I doing down here? Who are you – and why are you crowding around me? Why can’t I see – where are my glasses? I’ll just get up… Oh! I have no energy: my legs are exhausted. Hang on – I know this feeling….. have I just had a ….? The initial disorientation begins to wear off and I can get myself off the floor. It can be pretty embarrassing trying to get myself to a place where I can clean my face and change clothes, without having to go into details for the assembled crowd. My hearing suddenly goes superhuman and I can hear things going on in the distance. It means that things that are close by are uncomfortable to listen to: I may appear to be very quiet when I talk.
I also need to find out what has happened and sometimes it can be like conducting an episode of CSI – because people assume that because it happened to you, you were aware of everything. So I have to try to question them, when everything sounds incredibly loud and my ability to get speech to work is particularly poor. Plus I feel exhausted – I use up a LOT of energy during a seizure. I can lose a kilogram of weight during a seizure, owing to the stored ‘fuel’ in my muscles that gets used by the convulsions.
My sense of pain returns gradually so it may take 3 or 4 hours before I feel my bitten tongue, bruised limbs and the muscles running up and down my back that are still in spasm. The best thing for me to do after a seizure is sleep. If I sleep, the amygdala (the part of my brain which is close to the focus of the seizures) seems to ‘re-set’ itself into the day & night rhythms – the way nature intended. This is not always easy to do, particularly if I’m miles from home or in a hospital A&E waiting room where I have to wait on a stretcher in a corridor for 3-4 hours. I may get into the mod where I insist that I have to go to MY home and then sleep. It really is best if I sleep as soon as possible after the seizure. I also need to get hold of Adrian, the physio that deep massages the muscles in my back and neck, freeing them up. If I’m lucky he can treat me within 24 hours. If I can remember where I’ve put my phone!