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Harvey's story

I’m Harvey Shaw, a 38 year old man who was unknowingly born with a benign tumour in the left temporal lobe region of the brain. For the most part I led a normal life as a young child, attending schools in the normal way in my neighbourhood. I was different, hyperactive and taking risks more, often very energetic but I was also conscious of having spells. I felt very scared and afraid of my surroundings, so much so I used to shy away from people whenever possible, go off to my room to recover when at home with my family, or stay very quiet when this wasn’t possible, so as to not attract attention when feeling bad.

I was growing up fast in the early 1980’s and at the age of eleven, I attended a boys grammar school in Aston, Birmingham so as to try and remain focused on education, albeit leaving behind some local school friends and entering a new environment as a nervous individual with confidence problems owing to the complexity of the partial seizures I was suffering from.

It was whilst on a Devon summer holiday in 1986 when I was sat on a beach eating an ice cream that I had a brief, complex partial seizure whilst sat next to my father. I couldn’t respond properly for a couple of minutes.

Following that episode, I’d started to see doctors and began taking some anti-convulsant medication later on that year for the first time. This affected my mood a great deal and made school more difficult. By the end of January 1987 I’d stop taking them as I felt they weren’t having much effect on the seizures I was suffering from.

Later on that year, following a stressful school trip abroad and end of term exams, things were to change a great deal. A cluster of Grand Mal seizures happened one Saturday and what followed was a night over in hospital for observation and being prescribed the anti-convulsant medications again. After this scary episode, I was to stay taking them for the next 21 years.

For the next five years I attended further college and training courses, whilst in and out of spells of work that I could do but had difficulty in coming over properly to others around me and acting confidently enough.

I was desperate to try and make sense of it all a short time after I’d started working for my local authority in 2000. I began seeing more specialist neurological doctors, I was in my late twenties and the seizures were getting more difficult to deal with. An average of fifteen partial seizures per month and I began trying different anti-convulsant medications whilst still working. None had any success in reducing the number I was having over the long term.

I was frustrated. My condition was holding me back at work and I felt stuck in a rut. I decided to take a chance, you only live once, better to try and tackle my problems now rather than leaving it to much later in life.

After begrudgingly leaving work at the end of 2004, I spent the following two years trying different anti-convulsant drugs and keeping records of the partial seizures suffered in the hope my condition would improve. Again, there hadn’t been much change away from the workplace, and with different medications, I began to see a surgeon at Birmingham’s Queen Elizabeth Hospital who would later go on to operate on my brain and remove the benign tumour from my left temporal lobe at the start of July 2008.

Following the operation, I still felt the anaesthetic numbing the very top of my head for a couple of months until it began to wear off by the September. I could now feel that area of my brain, how it was reacting and how easily it was affected by what I was eating and drinking. The medications that I was on at the time, that I’d been taking for most of the past twenty years, I could no longer tolerate in the same way. It was time to come off them!

I was feeling very unwell every other day, my sleep was horribly affected and I’d made the decision to come off the anti-convulsant mediations quicker than the doctors and surgeon had advised. I found it was like my body saying it didn’t want these medications in it any more, they weren’t needed. Every time I was taking them I felt worse and many trips to A&E and my GP surgery suffering the effects of them were embarrassing and hard, if not impossible for medical staff to understand.

After a very trying six weeks or so, by the beginning of December 2008 I was off the medications and feeling serotonin and dopamine effects occasionally in my brain for the first time in years. It reminded me so much of my childhood and being hyperactive. There were a couple of afternoons that month when I felt brilliant could do so much, felt very confident and the clarity feeling was great.

I could now sense that the food I was eating was having a large effect on my mood. March was tough as my body was now trying to get used to having none of the anti-convulsant medications. The right leg spasms were nasty for a while but died down after a few weeks.

By April 2009, I started to keep notes about my food and mood to try and spot the trend, the link in it all and try to change the diet accordingly over time. I found that wheat, red meats and sugary foods and drinks were making my Left Temporal Lobe (LTL) region overwork. NHS blood tests were carried out in the July of 2009 and they came back fine – not allergic to wheat. A private B.E.R. Test later in the year however showed an intolerance to wheat and certain alcohols and citrus fruits.

By the start of 2010, the serotonin level in my LTL region was becoming more constant and I’d begun to make an effort to eliminate wheat from my diet, to stop the IBS problems and that area of my brain overworking. It was very difficult to know what to eat and foods that I’d come to look forward to for many years prior to the surgery, were no longer on the menu. It was goodbye to pizza, steak and kidney pies, most breakfast cereals, normal sausage rolls and cakes. I felt better by the spring of 2010 and I wasn’t as up and down in a bad way like I’d been during 2009 – one day hyperactive, the next very flat and irritable virtually all day and that nice clarity feeling experienced in December 2008 wasn’t happening.

Occasional use of the SSRI medication Molipaxin had lifted the serotonin level but it also made my reaction to foods more intense and I was still having mood problems, very frequently up and down if trying something with wheat in it again or after lots of exercise or when in stressful situations.

January 2011 and I felt very full now in my brain. The effects of Molipaxin weren’t the same and couldn’t be sensed as much, even when taking more. My mood was still up and down. Occasionally I’d still eat some food containing wheat or red meat to see the latest reaction; Had there been any change? Was it easier to take now? But if anything the reactions were stronger now my brain was more recovered from the operation thirty months ago. It was like sensing the over-reaction that lead to the seizures I’d suffered from all along in the past – a very nervous feeling and the eyes being more sensitive in such an instance. The LTL area now reacts as fast to things as it did prior to the surgery.

After certain rich foods, I felt my sleep pattern could be affected and I felt more nervous, moody or forgetful. The chemicals reaching my brain after eating every meal were created in my stomach four or five meals ago. That’s how long it takes me to feel the full effect of certain foods. The differences in mental performance can be very stark.

I’m more aware than ever of how I’m affected by food and how previously it had a lot to do with the overworking of my LTL region that lead to the complex partial seizures I suffered from for over thirty years. It has now been just over three years since the operation and thankfully I’m free of seizures now. I’m looking to get back to work again knowing how to deal better with pressures and those occasional more stressful moments in life we all come across and have to deal with at times whether it be in the workplace, the supermarket, stuck in traffic whilst travelling around or when moving house.