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Getting my life back, reducing medication… Again! :-)

I saw my new neurologist early this morning. He has been so impressed with my success on the ketogenic diet that I have just been offered a role as a patient advisor on a ketogenic diet trial for epilepsy in adults.  I am now down to 500mg Keppra twice a day from being on 1,750mg twice a day PLUS 600mg Epilim twice a day 2 years ago thanks to diet change and being stubborn.  I have achieved this on my own fighting against neurologists who wanted me to constantly increase my medication and who didn’t support my ‘risky’ methods. Now I finally have the support I need from a forward thinking neurologist and treatment team. I’m enthusiastic about being given the opportunity to help others, making the ketogenic diet work for them, making it enjoyable, and without it feeling like a chore. I find this incredibly rewarding because I was very scared in the past doing this all by myself with no support and I made a lot of potentially dangerous mistakes along the way.  There will sadly still be some who say this diet doesn’t work for brain tumour related epilepsy. It has certainly worked for me personally. Everyone is different, but I believe the benefits outweigh any potential risks. I believe that any risks are due to people adopting the diet in a way that isn’t suitable for them. The ketogenic diet for brain cancer should be much more than simply attaining a ‘therapeutic’ level of ketosis correlated with relatively low blood sugar readings. I just thought I would share this information. Great things can be achieved if you are proactive and learn from others. I am a student as well as a patient and I’m learning to be more humble, understanding, and open to views that challenge…

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The joy of sleep- rest, epilepsy, and medication

Last night I was asleep by 9pm. I will do the same tonight. Going to sleep late is a type of stress that I don’t think is good for the brain. I used to stay up late and had no sleep routine.  This morning I awoke at 5:30am feeling energised and stres free. I had a nice little workout and a stretch while I was up and felt the best I have in a long time. I also benefit at this time from my medication being weakest at the point as I take it at 9am and 9pm every day. This meant I could exercise and be awake rather than feel the strong effects of the medication. Trying to exercise before taking a sedative is much easier than after, trust me!!  🙂

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Surviving Terminal Cancer

This week I’ve felt fantastic and in many ways I actually feel much healthier than before my cancer diagnosis which is great! My energy levels have increased dramatically and yesterday I was very excited because I had lots of energy. It was also fantastic progress to start resistance training which I couldn’t do before. 🙂 I feel as though every day I’m feeling stronger and more alert and I’m very confident about continuing to reduce this medication. It’s an incredible feeling to be able to do all the things I thought I wouldn’t be able to do again. Yesterday I was invited by The Brain Tumour Charity to watch the premiere of ‘Surviving Terminal Cancer’ in London at BFI Southbank. It was very encouraging to see and hear from long term survivors of the most deadly types of brain cancer and it helped to reaffirm things that I am doing currently to keep this tumour at bay. It was an overwhelming experience (in a good way mostly!) but it’s hard to just write a short synopsis on what I thought because my thoughts are quite complicated. I’m incredibly thankful that The Brain Tumour Charity helped to set up this event and for all the people who were behind the making of the film. I hope to share it with others when it becomes available online.  It must also not be forgotten that Brain Tumour Research are making great strides forward in their work with colleagues in America to advance metabolic therapy and improved surgical techniques in this country in order to improve outcomes. I hope and will try to make sure that BTR will also be able to see this thought provoking, cleverly produced film.

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Migraines and salicylates. Finally an answer to some of my more horrendous symptoms

First day with no headaches! All I did was significantly reduce salicylates in my diet. Now I’ve also managed to reduce Keppra more so if my next scan is positive hopefully in a few months I can get off it completely.  For a long time I thought I was having partial seizures but I was actually having migraine auras which are now largely controlled. Amazing! I’m actually quite angry in a way that I have had to do this all on my own because I know what the potential risks could have been. I was constantly recommended to increase medication and was treated as if I was crazy. I will be laughing at those neurologists who told me this would be impossible. It’s very difficult, but not impossible. I wouldn’t recommend it to anyone else though unless you’re 100% sure you know what you’re doing. The neurologist I see now fully supports me. In my experience most of them don’t treat brain tumour related epilepsy differently and don’t take diet seriously but they should. I’m also showing that you don’t need coconut oil or supplements to be in nutritional ketosis.

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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.

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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…

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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…

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Campaigning for improved nutritional support for brain cancer patients

Emails have been sent, more phone calls will be made this week. I am aiming to improve nutritional support for brain cancer patients in this country one step at a time. It is crucial that we do not downplay the importance of this.  I will have a discussion (preferably over the phone or in person) about nutritional support for brain tumour patients with The Brain Tumour Charity and hopefully also Danone UK (they own Nutricia).  As an informed cancer patient with a degree in nutrition I am greatly concerned by the poor nutritional advice I received from registered dieticians, in particular the recommendation and prescription of high sugar drinks during treatment. I have a considerable, growing body of evidence that supports the need for radical change and I believe this is possible with small changes over time. The easiest way to start is with these high sugar ‘build up’ drinks (eg. Fortisip, Ensure, Complan etc.) recommended for brain cancer patients. Radiation oncologist Colin Champ MD agrees with me.  http://www.myhealthwire.com/news/diet-nutrition/990 As a simple example, we know that high sugar drinks (like Fortisip-Nutricia, owned by the Danone group) will reduce efficacy of the treatment, especially with dexamethosone (hyperglycemia is common as a response and is a predictor of poorer survival as shown below) http://www.ncbi.nlm.nih.gov/m/pubmed/24938515/ It is not uncommon for brain cancer patients to develop type 2 diabetes as a response to this steroid treatment over a period of time. It is worth noting the following… ‘Excess pro-inflammatory mediators, some of which can cross the blood brain barrier, may trigger neuro inflammation, which subsequently exacerbates neurodegeneration. Insulin and IGF-1 resistance leads to weakening of neuroprotective signalling by these molecules and can contribute to onset of neurodegenerative diseases.’ http://www.sciencedirect.com/science/article/pii/S0165572814001751 Additionally, poor glycaemic control will make it harder for patients to control brain tumour related epilepsy…

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