Yesterday marked 75 days on the the Modified Ketogenic (Atkins) Diet for seizures. I’ve gone from 12-20 (usually on the higher end) a month to 7-8. Day 74 was my first appointment with the neurologist since he approved the diet. He was so happy with my progress that he is going to recommend it to some of his other patients that aren’t responding to treatment. We were out of treatment options for me unless we resorted to brain surgery, which I’m not willing to consider. Six months ago we tried raising two of my three seizure medications, even though my doses were already pretty high, but that failed miserably. My seizures stayed the same, and I was a zombie. So three months ago we put the levels back to where they were and discussed the dietary option. Since it is a fairly new thing for adults, my neurologist didn’t have any patients on the diet, but he felt it was a good option to try. I do have the Vagus Nerve Stimulator (a wonderful invention that helps a lot), but I’m at nearly the highest setting, so with having failed so many seizure drugs, I’m the perfect candidate for this diet. Also, I’m capable of sticking to a regimented system, which helps.
My primary care doctor still isn’t happy that I’m doing the diet, but he doesn’t seem to understand it. He hears Atkins and thinks weight-loss, which would be a problem since I tend to be underweight. In fact, I’ve gained 5-10 lbs. intentionally since I started the diet by keeping the calories very high (for me).
So what have the difficult parts of the diet been? The hardest is eating so often. The hypoglycemic dips caused the nutritionist to have to redo my diet into six meals a day. Eating 5-6 times a day fixed the problem, but prior to that I was shaking and having headaches. The second is eating fat in general. I grew up in a vegetarian home where fat was taboo (we baked with applesauce instead of oil). Having a husband that grew up on fried food for the last 14 years helped me learn to eat some fatty food, but at first this diet was very, very difficult for me. The third most difficult part is dinners with extended family or the church. They think I’m starving because when you eat 6 times a day, each meal is smaller and it can upset some people that I can’t eat the same things they can. At Valentine’s Day the organizers of the church banquet ordered steak and broccoli from a nearby chinese food restaurant specifically because they figured I could eat that. Unfortunately, the sauce put it out of my reach. So, I at one piece of the steak and broccoli so I could tell them how good it was and had a large salad w/ avocado and oil on it (that I ate with chop sticks). Similarly, my mother-in-law made the family a meal using the Atkin’s book as a guide, but there were too many low-carb foods and I ended up consuming too much of my daily allotment in one meal. It really is a lot easier when I just take my own food, which is what I did the next time we got together. The cheesecake has actually been an excellent thing to add to my diet because I can share that with other people and they tend to like it.
The easiest parts of the diet at this point is figuring out what I can eat. I’ve memorized the carb counts on the foods I eat most frequently, and I stick to simple as much as possible. By making up my “bread” in advance, I have a simple, dense food that I can eat with a cheese stick and some bacon or scrambled eggs/cream. The cheesecake ends up being one of my meals each day. I’ve also found dinners to be far easier than I expected when I started the diet. Prior to the diet I would choose a source of meat, potatoes, bread and a couple vegetables for each meal. Now I do the same except the bread, and I skip the potatoes. I make sure to make my son carrots and corn some of the time so he doesn’t feel like he’s missing out.
It has been absolutely worth it. I haven’t had a serious injury in a while now, and while I’m still having tonic seizures (these are the ones we count) and daily absence seizures, I haven’t had a tonic-clonic since I started the diet. Who would have thought that something as simple as cutting out carbs and increasing fat dramatically could help where so many other treatments have failed?