tegid’s BodyBlog

For the past 24 hours I’ve experienced erratic heart beat: nothing painful, just episodes of slightly faster beat and not feeling ‘right’. My initial thought was "oh no – this is all the fat I’ve eaten over the past 8 months on the ketogenic diet: this is heart disease catching up with me". But then the scientist in me came out - along with the heart rate monitor and running shoes… So I went for a short run and recorded my heart rate, which reacted to the exercise’s demand for oxygen as predicted.  I only got palpatations while I was ‘resting’.  To me, palpitations that can be over-ridden by oxygen demand suggest an endocrine trigger. Exactly what, I can’t say.. It could be thyroxine or adrenaline. I am aware that over-exertion is linked to palpitations. However, I can’t help but question whether this is linked to Anti Epilepsy Drugs that I took in the past…

An epilepsy medication called carbamazepine was prescribed to me for 6 years. Whenever I had a seizure, the prescribed dose was increased. At the end of 6 years, I was taking very high doses of this drug.  In scientific literature, this medication is associated with changes in serum sex hormone concentrations as well as in levels of the sex hormone binding globulin (SHBG).

Carbamazepine (a.k.a. Tegretol) is known to ‘accelerate’ the P450 enzyme system in the liver (Perucca et al. 1984).  So hormones that get metabolised via this enzyme system -including T4, free T4, TSH, DHEA-S and SHBG will get ‘taken out’ of the body at a faster rate. The research on all this dates back to the 1980s. It seems pretty obvious to me that that endocrinological expertise is a necessity whenever this medication is prescribed.  Serum lipid levels (i.e. fat) are known to change when people take this medication - total cholesterol, HDL, LDL and TG increase.

I noticed many things going wrong with my hormone (endocrine) system - as well as my digestive system and immune system - when I was taking carbamazepine. These illnesses seem to be gradually wearing off, since I stopped taking the drug.

I was never given any routine blood tests while I was prescribed anti-epilepsy drugs. I could have avoided a lot of hardship if blood tests had been taken regularly.

In May 2008 I was told that I had a condition that would kill me. I was sat next to my father at the time. Now that I can reflect on this incident in a calm situation I can see that I was immediately concerned for him. I didn’t really consider who would look after my feelings because I was scared about how this news would impact on those I hold dear to me. I went into ‘protective’ mode - and stayed in it for quite some time.

There were those that offered their help via this website and to whom I am so very grateful - Carla, mk2004, FireMedicMike being the immediate ones. I am so very, very lucky to have discovered dpd55 - whose scientific approach has brought me astonishing discoveries with the low-carb diet that now outsmarts the disease that the UK’s ‘experts’ predicted would finish me. I have tried to stay objective and analytical throughout the seven months that I have used this diet, recalling the method of intuitive thinking that I learned back in the 80s.

Battling the outside world with intuitive thinking is one thing - confronting the inner world of feelings with emotional intelligence is another. And with that I really have problems: I’d been told I was going to die and just about everything I coming back to haunt me.. Anger, fear and sadness. Right when I needed it most Adam247 was there -in person - to listen to me and all the stuff I’d never dared to voice before. I suspect that quite a bit more is needed as time goes on - but the outshot of all this is that I’m learning something new: to trust.

The seizures came back in December/January. Once a week, in the mornings they would strike. It was a mystery as to why - as I hadn’t changed anything so I couldn’t figure out a cause. My waking hours were spent making sure that I was doing everything I could to keep them at bay - but they were back…

Here is my latest idea:

The brain uses glucose to power epileptic seizures - the chemical reactions involved when the neurotransmitters all fire off need the rapid energy that glucose provides. A low carb diet gives the brain limited glucose - the diet gives it ketones - which are a much slower form of energy and can’t power the neurotransmitter ‘big bang’.

So glucose is coming from somewhere - once a week early in the morning…

The part of my brain that IS damaged is called the amygdala. This was shown in MRI scans taken back in 2001. There’s two amygdala - one on the left, one on the right side of the brain. My damaged one is on the left side. The amygdala is involved with the formation of memories and intense emotions. When we sleep, it is particularly active during REM sleep and the dreams we have during this time. Could my left amygdala somehow activate the hormone system while I sleep?  In particular during dreams that involve anxiety or distress, could it not make the adrenal glands release more cortisol? During waking hours, the adrenal glands can do this…  Under normal circumstances, cortisol levels are known to be highest as we wake - so if there was some disruption to this normal system, could my body be making more cortisol as sleep - and in particular as I dream?

I say this because cortisol increases gluconeogenesis - the chemical process where the liver breaks down protein and turns it into glucose and then releases it into the blood. This would increasing the amount of glucose circulating in the blood. This could then explain how my brain gets hold of the glucose it needs for seizures in the morning.  

Cortisol also decreases amino acid uptake by muscle, preventing protein synthesis. This could explain why my body is simply not growing despite high amounts of dietary protein and fat. I eat 300g/30g/350g (pro/carb/fat) daily.

Any suggestions?

I haven’t written much in the Blog recently - I’ve been developing and applying the ketogenic diet that has so far successfully stopped my epilepsy for 3 months.

On Friday I dared do things that I haven’t done since developing epilepsy - namely clean & jerk and then go for a run afterwards. The last time I did that was over 8 years ago and I was running the gyms at the University of Birmingham.

So I have some major, major thank-you’s to go out here:

Firstly to dpd555 who has researched the effects of this diet (at a nanoscopic level!) on adult people with incurable seizures. He continues to send encouraging messages and updates from the world of academia. I wouldn’t have dared try this approach without his words.

Carla Hampshire has been a saint - and has sent some of the most touching messages to me. I know that she’s been praying for me over the months when my condition was getting worse. While dpd555 was in charge of my brain, Carla was in charge of its soul! She did a stunning job. I feel so utterly delighted to know that she got her pro card last week. That was well deserved.

FireMedicMike and MK2004 continue to stand by me, regardless of the ups and downs I experience. I want to see the pictures of both of them going up on stage and competing, at some time in the future. I just know that something good is going to happen for those guys.

And then… When London’s neurologists’ speeches were preparing me for death… Along came the guy that  shattered their arguments with the one quality that they will never have.. The one thing that could keep my life-fire burning when their rain set in. Honesty. Thank God I bumped into Adam247 when I did. He’s seen me in seizure, he’s seen me fight them off… He’s always been there for me, with downright honesty and his astonishing mixture of physical, intellectual, emotional and spiritual reasoning… He’s the one person that accurately indicates my mistakes - without offending me - so that I can change.. And improve.  It’s rare that I trust people to the extent I trust him.

So there are a few of the names that have helped me get through the past year. Where would I be without the bodybuilders that have helped me rebuild my life?

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I feel as though my ability to ‘think’ is now back - after 8 years of suspended animation caused by those prescribed epilepsy drugs.  I was taught to argue by the philosophers at Jesus College, Cambridge: Heaven help the medics that put me on those drugs- should my focus ever turn to them….

Sitting here trying to get food into me at 11.30PM, as I keeled over at 7PM with a tonic clonic seizure. Fell down on my right butt, I guess, judging by the current tenderness.
I was trying to do a CV workout at the time and had been running, out on the street for 20 minutes. The good thing is that I was wearing a heart rate monitor that kept recording throughout. I’ve transferred the details onto the PC and it shows that my heart rate drops very rapidly (30 seconds) into a seizure. I was in hospital for 4 hours.

I have discovered that John Watson at the University of Sydney has coined the term ‘neurotheology’ for the branch of ’science’ that is trying to establish that religious experiences are simply a type of epileptic seizure. In particular, they point at temporal lobe epilepsy (the type that I have) as being the ‘logical explanation’ for those that feel the presence of God. They figured this out after putting Carmelite nuns into MRI scanners, while the nuns were praying.

I actually find this  insulting - on two accounts. Firstly by claiming that religion is no more than a brain condition, it implies that religion can be ‘cured’ with the same anticonvulsants that are currently making my life hell. Secondly it implies that it is more important to ‘disprove’ religion than it is to find cures for epilepsy.

I wanted to let you know that, as somebody with the form of epilepsy that is implicated in all this, I  utterly disagree with the hypotheses and particularly the ethics behind ‘neurotheology’.

Please don’t believe everything that so-called ’scientists’ come up with - sometimes, one needs to question their motivation..

I particularly wanted to thank BB1968, Gallaman and Bluesplaya at this point, for keeping me sane recently.