Ramadan is the Islamic holiday that involves many Muslims fasting for a whole month. Kasam tells Claudia Christie about his experience of Ramadan – made particularly tricky by his treatment on the ketogenic diet
Ramadan, the sacred month of the Islamic calendar, started on Thursday June 18 and continues until Friday July 17. There are almost three million Muslims in the UK, many of whom celebrate Ramadan by fasting during the hours of daylight. They also undertake extra prayers and worship as a means to grow closer to Allah. It’s a very festive time too, with family gatherings during the evening meal – iftar.
Ramadan can be extra tough on people with epilepsy. Seizure frequency can increase during periods of fasting, coupled with the fact that some people will only take their medication with a drink after sundown. On top of that, factor in that Ramadan in 2015 covers some of the longest and hottest days of the year with few night-time hours. All things considered, it is a tough month.
Kasam is an Epilepsy Action volunteer living in Birmingham He has lived with a drug-resistant form of epilepsy for over 25 years, and considered both surgery and vagus nerve stimulation (VNS) for his condition. Kasam was eventually put on a three-month trial of the ketogenic diet in May this year.
The diet is higher in fats and lower in carbohydrates than a typical diet and must be administered only under the supervision of an expert dietician. While effective in controlling seizures for many people, some do find the diet very restrictive. Kasam is also Muslim. That means he recently had to try and balance his new diet with daily fasting for Ramandan.
Kasam explains: “For the first couple of days of Ramadan, you’re really getting used to the hours of eating and drinking. I have to eat between sunset (which is currently around 9.30pm) and sunrise (at around 3am). I also have to fit in five daily prayers!
“Because my health deteriorated in the last couple of years, I haven’t been going to mosque for evening prayers, just in case I have a seizure there. If that happened, others would have to break their prayer out of concern for my wellbeing, so I pray at home.”
Kasam consulted his neurologist ahead of Ramadan. He is being closely monitored during his month of fasting. He continues: “I’ve had blood tests done and an EEG. Basically the advice is to take care, limit any risks and not exhaust myself. I’m trying to take my meds as soon as I break my fast, then again as late as I can before sunrise to avoid a knock-on effect.”
The main challenge for Kasam is sticking to the strict ketogenic diet after sundown. He explains: “The ketogenic diet is tough. I can only eat 30g of carbohydrates a day, which amounts to a few crisps! Plus I only eat halal food, which limits variety. So when the majority of Muslims are opening their fasts with samosas, pastries and sweet dishes, I am opening mine with strawberries and a child-sized yoghurt! Saying that, I’ve recently discovered blueberries – I love them.”
Despite all this, Kasam is already feeling the benefits of the diet. “My trousers are a lot looser and I feel healthier mentally, too. In fact, my whole attitude has changed. I’m feeling a lot less stressed, which is normally a big seizure trigger for me.”
While very restrictive, Kasam’s treatment with the ketogenic diet may have actually helped prepare him for Ramadan. He explains: “Ramadan has felt a bit easier this year, maybe because I am already in the mind-set of restricting my diet. But the tiredness is so hard, I do get worn down, my meds knock me out and tiredness kicks in. During fasting times, sleep patterns change for a number of reasons, mainly as you are governed by the time of the fasts.”
It must be incredibly difficult to squeeze in enough sleep alongside meals during very short darkness hours. This is potentially a tricky thing for a person with epilepsy to manage – since tiredness is a seizure trigger for many people like Kasam.
He continues: “Fatigue is my biggest obstacle to overcome for Ramadan. It’s a factor that could set off my epilepsy. My sleep has been all over the place. I work from 7am until 4pm, then I tend to sleep for a couple of hours at tea-time to feel fresher for the evening. Later, I sleep at 12.30am and then I’m up again at 1.30, similar to other Muslims. My wife caught me falling asleep reading the Koran last week, but that was the hottest day in the UK for a decade!”
Traditionally, the ketogenic diet has been prescribed for children epilepsy. It is not widely used by adults in the UK, despite scientific evidence suggesting that it can be very effective. As one of only a few adults using the diet, Kasam’s experience is of huge interest. He insists he is in it for the long haul.
Kasam says: “To be honest, I’ve not noticed a big change yet since starting the diet. I had three seizures in a row in May, just when I started the diet. It could have been just a bad day at the office. It’s hard to gauge just yet. My meds have stayed the same but they’ll review me in three months’ time. I have had dizzy spells and felt lethargic, but otherwise I’m feeling positive.”
Kasam is hopeful that the ketogenic diet will become more widely available. He concludes: “The team at Birmingham Hospital are really good and through them I’ve met other people on the diet. They are all at different stages and all seem really positive which is very encouraging. I hope eventually it will be rolled out across the country and help others like me to control their epilepsy.”
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