Monthly Archives

January 2015

Uncategorized

Risks outweighing benefits or benefits outweighing risks?

I’ve decided to reduce my epilepsy meds again because life is short and I don’t trust neurologists. I don’t advise anyone else to do this but the further I get into ketosis the more intense the side effects of the medication hits me. I don’t know if that’s coincidence or not. I’m pretty sure this isn’t tumour progression because it always follows the same pattern. I’m discussing this soon with my neurologist but I know my brain better than they do in many ways. I always feel great before I take keppra and the reaction I get after taking it now is often so extreme that I get searing headaches that make me feel like I’m going to pass out and never wake up again. They call this a risk but it’s an easy choice for me. The best decision I ever made in the past was completely coming off Epilim over time so I’m gradually going to reduce Keppra and see what happens. Of course it’s scary and I’m bound to get some kind of withdrawal but the harsh reality is that this is a trial and error process. On the surface I may seem brave but I’m far from it. I can’t stand constantly being in pain and discomfort, I’m petrified of death and I’m realistic about the future. Coming off Epilim was the hardest thing I have ever done but I wanted a life so badly. Luckily for me my intuition was correct, Keppra seems to have saved me from seizures in the past so I’m not sure how this will work out but if I listened to all the people telling me what to do I would be bed bound and loaded up on tons of AEDs and paracetomol.

Continue reading
Uncategorized

Exciting updates- ketosis

I’m feeling very tired today after being very active recently (relatively speaking). It’s been a funny yet welcome feeling this past few weeks being virtually free of migraines and having significantly reduced seizure activity. I’ve reached my blood ketone and blood glucose goals now and my levels consistently hover around these figures below which is very satisfying.  The most satisfying thing about it for me is that I know there are improvements I can still make. I’m ready to really push on with this by getting much better sleep, making my own shower gells, hand soap, toothpaste, and shampoo, and monitoring exercise more effectively. I already use a natural toothpaste but I can improve it. I’m really enjoying experimenting with this diet more now, it used to be a chore because I needed to realise how to make it work for me as an individual. Now that I have I really enjoy it. The picture below is you, me, and everyone. The biggest mistakes I made when I started the ketogenic diet was eating double cream, dark chocolate, and nuts which are huge migraine triggers for me. Nutritionally I don’t think they offer much anyway, apart from small amounts of walnuts occasionally (they offer a more favourable omega 3,6 ratio compared to other nuts). As soon as I removed these foods from my diet the migraines disappeared.  I’m really enjoying the book ‘The Omega-3 Effect’ at the moment. It has a lot of science that is explained in simple terms as you can see. I love the cartoons!  I’m still frustrated by the long spells of fatigue I experience and how random they are but as I have said before the good times are more frequent and much better than they used to be. I make the small amounts of…

Continue reading
Uncategorized

My very special day- reflecting on 2014

I have been a huge Arsenal fan for as long as I can remember, it’s just a part of my life and always will be.  After my brain cancer diagnosis in April 2013 I was forced to quit my studies, move back with family, and lost a large part of my independence through having poorly understood invisible disabilities. Watching the football had become a real escape when times got difficult, stuck in bed with migraines, seizures, and constant fatigue.  With diet, rest, and medication my seizures are largely controlled now and I feel lucky to still be here because this is a really devastating type of cancer and my family feared for my life after I suffering the brain haemorrhage on the train that led to my eventual diagnosis. I know I still have difficult times ahead and the only certainty is uncertainty but I can take time to appreciate the ‘small things’. A few weeks after my operation I was told my cancer was aggressive and incurable. I suffered with understandable bouts of depression, anger, and fatigue for a period during radiochemotherapy until I decided to discontinue treatment when I realised it would be ineffective for me. Most importantly I wanted to live life despite the poor prognosis associated with my type of cancer.  Watching Arsenal became a real escape to the reality of my situation on my bad days. Even if I’m watching a stressful game it’s a distraction and something else to talk about other than how I feel.  When I started to get my energy and confidence back to a functional level in June/July 2014 I heard about Willow Foundation and decided to apply for a special day thinking it would just be a small thing. I told them I was a huge Arsenal fan and how…

Continue reading
Close