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5 crucial facts to be aware of if you’re on AEDs

1. ‘Anticonvulsants can interfere with calcium and vitamin D metabolism. They cause an increased rate of bone turnover, thus affecting bone density. It is recommended that anybody who is taking anticonvulsant medication should also be taking additional vitamin D.’ ‘Many doctors, however, are not aware of the association between anticonvulsant medication and bone disease and less than 10 percent of neurologist recommend taking calcium and vitamin D to protect against side effects of these drugs.’ From countless studies including: http://www.sciencedirect.com/science/article/pii/S0920121114001661 And http://www.sciencedirect.com/science/article/pii/S1059131107002385 2. Switching from branded meds to unbranded does make a difference and can result in breakthrough seizures. The government has recently made branded medications less available to cut costs. http://www.ncbi.nlm.nih.gov/m/pubmed/21521860/ 3. Simply asking your GP for a FREE vitamin D test can definitely help you to control your seizures better.  http://informahealthcare.com/doi/abs/10.3109/00207454.2013.847836?noFrame=true&journalCode=nes 4.  Hyperglycemia lowers seizure threshold. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387262/ 5. Brain tumour related epilepsy needs special considerations that I don’t believe are currently being met.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3386502/

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Getting back to exercise

I have started doing a bit more in the gym which is very cool. I suffered a tremendous amount of fatigue for over a year after my radiotherapy and this has improved significantly recently. I honestly thought it never would and felt very down about it. I work very hard to learn about when to rest and how to control what fatigue I have now. Sustained concentration is still very difficult. There are many exercises I still can’t do that put pressure on my head so I think it’s a great idea for anyone with an acquired brain injury to build this up very slowly by doing water based exercises using water dumbells. I use the ones pictured below and I have help from a friend who instructs aqua so that I can work at the right intensity.  I have epilepsy and migraines that can be triggered by exercises so I need to be very careful with what I do. All of my exercises and rest periods are carefully considered and so is my food. I can’t do cardio on land and I need to be very careful with my body temperature. The brain is very sensitive to changes in temperature, personally when my body temp goes up I get very dizzy. I swam properly for the first time yesterday which is a huge thing. 

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Yesterday, all my troubles seemed so far away

Usually I find that ‘recovery’ from my cancer treatment about a year ago does not follow a nice linear path to progressive health but recent times have been much better than expected. I have felt this way before and then suffered big setbacks with fatigue, migraines, and increased seizure activity but all that is under control now. I know that this is a combination of luck, the ketogenic diet, and avoiding personal known migraine and seizure triggers. At the moment I am doing much better than I had ever hoped. I say at the moment because like I say it can all be taken away very quickly so I have to remain cautiously optimistic. With time I have learned what foods I tolerate best. Yesterday I went to the gym and had a little swim, something I couldn’t do just a few months ago. This was a huge deal, I don’t push myself and I have to be very careful with exercise selection because I am one of those individuals who can trigger seizures with exercise if not controlled. I am looking to add a supplement called ‘ketoforce’ to my diet before I go to the gym soon so it is easier to remain in nutritional ketosis and hopefully it will also help my exercise.  http://www.bestsupps.co.uk/prototype-nutrition-keto-force-480ml Initially when I started the ketogenic diet I suffered with debilitating fatigue, migraines, increased seizure activity, and what is often called ‘keto flu’. This is typically caused by loss of electrolytes, resulting in feeling sluggish with little energy. After introducing more potassium into my diet and regularly taking micronutrient supplements this improved drakatically. I think this can be a common problem because we are typically so used to having a lot of potassium in our diets from foods like potatoes which you can’t have…

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Cannabis oil and brain cancer- current research

Many people question whether cannabis oil can be an effective treatment option for brain cancer moving forward. Researchers are currently experimenting with different ratios of CBD/THC to examine the therapeutic effects on glioma cells in animals and human patients. In future I would like to see this explored further with additional clinical trials for lower grade tumours and radically excised malignant brain tumours.  Trials are currently underway by GW Pharmaceuticals on glioblastoma brain tumours. Please watch my video recording from ITV News and let me know what you think. In this video Dr. Wai Liu is being interviewed about his research in this area. http://youtu.be/CemX3-oGSQ4 Here is some of the research by Dr. Wai Liu and his colleagues. Dr. Liu is based at the teaching hospital where I had my craniotomy- St. George’s University of London. http://www.sgul.ac.uk/media/latest-news/study-shows-non-hallucinogenic-cannabinoids-are-effective-anti-cancer-drugs http://m.mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.abstract

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Research supporting metabolic therapy as treatment for neurological disease

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367001/ http://www.mdanderson.org/newsroom/news-releases/2012/metabolic-protein-launches-sugar-feast-that-nurtures-brain-tumors.html http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=3688 http://m.fasebj.org/cgi/content/meeting_abstract/27/1_MeetingAbstracts/863.1 http://m.fasebj.org/content/29/1_Supplement/725.22.abstract?sid=3300a1e5-62f2-4ef1-bbb3-62b2635bb54b http://www.sciencedirect.com/science/article/pii/S2213231714000925 http://www.ncbi.nlm.nih.gov/m/pubmed/25301680/ http://www.ncbi.nlm.nih.gov/m/pubmed/24598140/?i=2&from=%2F25301680%2Frelated http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0065522 http://www.ncbi.nlm.nih.gov/m/pubmed/22563484/ http://youtu.be/gONeCxtyH18 http://www.ncbi.nlm.nih.gov/m/pubmed/24615175/ http://www.ncbi.nlm.nih.gov/pubmed/24503133 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063533/ http://cen.acs.org/articles/93/i12/Targeting-Brain-Metabolism-Offer-New.html http://www.tuitnutrition.com/2015/03/metabolic-theory-cancer-speculation120.html http://www.sciencemag.org/lookup/doi/10.1126/science.aaa1299?utm_source=twitter&utm_medium=social&utm_campaign=twitter http://highsteaks.com/science-diabetes-vs-low-carb-keto-diets/ http://www.ncbi.nlm.nih.gov/m/pubmed/20820932/ http://www.cavemandoctor.com/2015/03/07/aristotle-blood-sugar-surviving-cancer-b-c/ http://www.jackkruse.com/do-food-electrons-impart-a-quantum-effect/

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Living with disability

I was asked recently if I could write an article detailing my personal experience of a typical day living with my particular disability/illness. The picture below is hilariously appropriate for me as a young man who was once very active. In my situation illness and disability go together as I have an acquired brain injury caused by a malignant brain tumour. My tumour was discovered after a brain haemorrhage on a train on April 13, 2013 followed my multiple grand mal seizures in hospital. I would go on to receive brain surgery to remove as much tumour as possible followed by chemotherapy and radiotherapy.  Overall my ‘acquired brain injury’ is mentally and physically disabling and debilitating. I have some relatively good days where I can surprise a lot of people including myself in a big way, but also some bad days with migraines, fatigue, depression, and increased seizure activity. It can be completely random or it can be triggered by over stimulation in that part of my brain. Every now and then I will go on a run of days where I just seem a bit tired and you can barely tell I have any problems. I’m very good at hiding things on my good days so I celebrate these days and just get on with enjoying every moment as a blessing. I’m actually on a good run at the moment where I’m just tired with a few dizzy spells. Any kind of acquired brain injury is often an invisible illness so socially people can find it very difficult to understand. Every day I fight against assumptions and ignorance because I don’t ‘look’ like I have incurable cancer or any kind of disability. Even if people do understand I can often get treated like a patient and not a person….

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Seizures in my sleep- ouch, nearly

I had a seizure at about 3am in my sleep. It woke me up and I was conscious with no control this time, strange. I made a lot of yelping noises that woke my mum up and my right side was going a bit mental having a party on it’s own. I felt very dizzy and still do a bit and the let side of my head feels very hot. I think maybe it was my own fault as I’ve been staying up later.  I’m glad I know it not the tumour because I would be panicking now otherwise. I was snappy and verbally aggressive to my mum which I apologised profusely for not long after. I get like that often after seizures and it’s horrible because that’s the complete opposite of who I am. I get a lot of strong mood swings where I can get very snappy and agitated and want to be left alone. I know I just need to recover and get on with it and that’s what I plan on doing. This is my reality now, at least it’s happening at home more than it does in public. I have only had small seizures in public and people usually just think I’m drunk, rude, or a bit weird as my words get slurred, I become slow with everything I do, and I get strange sensations which are difficult to explain. Sometimes I feel as though I’m floating when out so I sit down and I get strange feelings in my face and parts of my body.  I’m not going to whinge about it now though, it’s part of my normal life and although after seizures I have a strong feeling of fragility and low self esteem, once I recover I become stronger mentally every time….

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Still exhausted, trying my best

Yesterday I finally had my MRI scan but it was different to the scans I usually have. I had an MRI spectroscopy scan which I think all brain tumour patients should have the option of having. I’m exhausted now and feel quite depressed as I keep getting dizzy spells and migraines so I’ll be lazy and share this information about MRS. It is from Wikipedia BUT I have checked it thoroughly for accuracy. It’s surprisingly quite a good description. They don’t do MRS at The Royal Marsden which is one of the main reasons I moved my treatment to Charing Cross.  Magnetic resonance spectroscopy (MRS), also known as nuclear magnetic resonance (NMR) spectroscopy, is a non-invasive, ionizing radiation free analytical technique that has been used to study metabolic changes in brain tumors, strokes, seizure disorders, Alzheimer’s disease, depression and other diseases affecting the brain. It has also been used to study the metabolism of other organs such as muscles. In the case of muscles, NMR is used to measure the intramyocellular lipid content (IMCL).

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