I haven’t updated my blog in a long time. I was working with the Paleomedicina group on a healing diet that presumably would cure my epilepsy. But, did it work? It a word. No. Did I give up on it too quickly? Maybe.
Was I strict on the diet? Yes. I didn’t cheat.
A seizure on the paleo ketogenic diet
This is one of the things that worried me the most. I knew that I was having more auras and seizures around the time that my menstrual cycle was happening. I had gotten the seizures under control to the point that the ONLY time that I was likely to have a seizure was either mid-cycle when the estrogen was dropping and the progesterone was rising or right before menses when the progesterone was dropping and estrogen was rising.
The change in hormones also triggered diarrhea. This ONLY lasted for a few days. It happened while I was on the paleo ketogenic diet as well. I actually did not see an improvement in digestion. Dr. Zsofia Clemens told me that I could go a few days without a bowel movement. I went 14 days once without a bowel movement.
Why was I having a bowel movement when I did? I started my period. Suddenly, I went from no bowel movements to lots of watery bowel movements for a few days. Then back to nothing for days.
I also experienced gas. I would belch and fart during these times when my hormones were changing. It was more noticeable than when I was on a standard diet. I was paying closer attention to the symptoms because I had to record them everyday and follow up with Paleomedicina. So, maybe it was slightly better and maybe it was worse. It is difficult to say.
Did I continue with the Paleo Ketogenic Diet?
Sadly, I had not one but two seizures on this diet. I was on the strict diet for 12 weeks. At week 8, I had my first seizure. I was encouraged to give the diet more time. Two weeks later (at the mid-point of my cycle), I had another seizure.
The diet wasn’t hard and I was hopeful that I could see some amazing results. Unfortunately, Thanksgiving was coming up and I knew that after having seizures and not feeling great on the diet, it was going to be hard to convince myself to stick with it through the holiday.
I went out and tested my vitamin D level. Dr. Zsofia Clemens had commented that it had started out low and that my angular cheilitis was a result of the low D levels, but she discouraged me from taking supplements due to additives that could hinder the healing process.
She told me that the vitamin D levels would naturally increase.
Well, they didn’t.
In fact, the vitamin D levels had dropped by one point. I had gone from 29 ng/ml to 28 ng/ml. I do realize that seizures can decrease the vitamin D level in your blood, but I had waited a week and started taking cod liver oil with vitamin D in it for a whole week before I thought to test my levels.
Supplementing with vitamin D
I got my test results right before Thanksgiving. A lowered vitamin D level was discouraging and let me cheat on the diet for Thanksgiving Day food. I do realize that I may have erased any progress that I was making, but I wasn’t feeling great with only meat in the specified proportions.
I didn’t just have the apple pie, but I ate the stuffing, the potatoes, the sweet potatoes, and the cranberry sauce. I helped finish up the leftovers for the next two days without triggering a seizure. I kind of felt a little better with more food in me.
It turned out to be difficult to return to a paleo ketogenic diet. I tried to be as ketogenic as I could until Christmas. I continued supplementing with vitamin D. When Christmas rolled around, I had been taking vitamin D for about 5 weeks without having any seizures. I felt pretty good.
My ridged nails from the alopecia were looking better. Still, no hair, but Zsofia Clemens had not sounded promising about getting hair back on the paleo ketogenic diet anyway.
Christmas diet cheats
I ate all the food at Christmas when my family was in town. It was great to see them and I didn’t want to make a big deal about the food. My sister also commented that I looked too skinny and boney. This was incredibly hard to hear because Dr. Clemens had said I may initially lose weight and put it on. The putting it on part did not happen.
So, I indulged. Chocolate, pasta, pies, and pizza.
I ate poorly for about five days. I didn’t have a seizure from the cheats. On December 26, after the family had left and I was getting back to my normal diet, I had the mildest seizure of my life. I didn’t even know I had one when my mother told me. She said that it was about half as long.
I attribute this seizure improvement to vitamin D. My diet was absolutely terrible. But if my seizures were caused by diet alone, I would have had one days earlier.
The seizure was 2 days before my menstrual cycle. I could tell my hormones were fluctuating because I was getting gassy.
I know that hormones can improve with these ketogenic diets, but it hasn’t really been the case for me thus far. I think the biggest improvement came when I added in vitamin D.
I quickly made an appointment to test my vitamin D levels after the seizure. They had gone up to 49! I had watched a youtube video done by Dr. Annette Boswell who stated that neurological benefits don’t happen on the ketogenic diet unless vitamin D is above 50.
Maybe this is the key.
A Paleo Ketogenic diet isn’t a cure-all
I strongly feel that I shouldn’t have had a seizure on the paleo ketogenic diet if it was truly the answer for me. I definitely think that correcting vitamin D levels is a vital component of healing. In addition to Dr. Annette Boswell, Dr. Natasha Campbell-McBride of the GAPS diet says that you need vitamin D for healing.
It is fun to hear about all the testimonials from a carnivore diet or a paleo-ketogenic diet, but when it doesn’t happen for you, it is discouraging. My frustration led me to quit blogging for a while. Sorry!
Now that we’re half-way through January, I have eliminated most junk food from my life. I’m not entirely keto or paleo, but I am taking my cod liver oil. I do feel pretty good. It’s been 3 weeks since my last seizure, but I’m feeling optimistic. I’m not strict on my diet anymore, but I’m listening to my body’s signals more closely.