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Kasam - I feel more hopeful

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Kasam lives in Birmingham, where we works as an analyst at the council. He has lived with a drug-resistant form of epilepsy for over twenty five years. He explains how his condition impacts on his daily life.


“I have seen countless doctors and therapists. I continue to endure a staggering array of tests, medications and therapies to control my seizures and help with other challenges on a day-to-day basis. My seizures consist of complex partial seizures which mean I lose consciousness and convulse for a minute. These can cluster and I have been known to have three in 24 hours. I continue to have seizures once or twice a month but they are unpredictable. I am also at risk of SUDEP (sudden unexplained death in epilepsy). The medication affects my cognitive ability and my short term memory is poor. It can also cause double vision and irritability, which impacts on my mood and my confidence.”

Kasam has been exploring all the options possible in a bid to reduce his seizures

“I’ve lived with epilepsy for over half my life, and I’ve now got to a situation where most medicines do not work for me anymore. I’m actually immune to most medications, but sadly not to their side-effects. So I’ve now been considering the surgery route. There are risks involved, such as possible loss of sight in my right eye or possibly losing feeling in the right side of my body. VNS is another consideration. I’ve watched a video and a lot of it has been explained to me.” 

After a lot of deliberation, Kasam turned down both surgery and VNS

“Yesterday I started the ketogenic diet. It’s very different, that’s for sure! At this stage I’m just trying to get the right ingredients and getting my routine and quantities organised. For me they’re big changes. I have a very sweet tooth, so even just small things like a cup of tea with no milk or sugar are big changes for me.

“I’m going to try it for three months. I’ve been to an open day about it recently. A cook suggested different recipes, involving our partners in making meals. They gave us weighing machines to take home. I’ve explored it all through my clinic and I’ll be monitored very closely. I have a dietician assigned to me, as well as an epilepsy specialist nurse and my consultant. I’ll have regular testing of my glucose and ketones.

Kasam is optimistic about trying the ketogenic diet but realises a lot relies on his willpower

“It will be interesting to see how it goes. I have to be mentally very strong. I have to put my fasting head on and block everything else out. I need to find other nourishing items, things that will replace carbohydrates, or at least take my mind off carbohydrates. I can only have a quarter of a biscuit, or a spoonful of Rice Krispies. And I’m really going to miss daily things like rice, cakes, chocolate and chapatis.”

Kasam says he used to feel frustrated with his care and treatment. But now things are changing

“In the past, I’ve felt that doctors haven’t listened to me. Often they’ve said, ‘Just wait six months and see how the medication goes.’ But more recently my consultants have taken things forward and made big inroads with my health. There’s a plan of action and that feels good. I feel a lot more informed and I think that’s because awareness has improved within healthcare. There is more research and development out there.”

“I still think there could be so much more that could be done to reach people, to help them find answers. You really have to be proactive in pushing for new treatments and doing your own research. I went through a stage when I was depressed. But by exploring my options and asking more questions, I feel more hopeful that I could reduce my seizures.”

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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.

Event Date: 
Thursday 19 June 2014 - 11:59

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Comments

Hey i understand so far no medication is working for me at the minute but slowly im getting there with my meds but they are also making it worse

Submitted by phillip mckinnel on