The Story So Far…

“In the beginning, the universe was created.
This has made a lot of people very angry and been widely regarded as a bad move.”
– Douglas Adams, The Hitchhiker’s Guide to the Galaxy, 1979

Upon making the observation that I haven’t written a blog post in three years, and considering all that has occurred during that time and the number of people posing inquiries about all that has occurred during that time, I’m compelled to resurrect my long-abandoned site to summarize all that cannot be adequately captured in 280 characters or less.

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tl;dr version: I was able to completely eliminate, after 30 years of intractable epilepsy, all seizure activity and pharmaceuticals just by changing what I ate.

My first memories around what I later in life discovered was to be seizure activity began when I was twelve years old. This was around the time I hit puberty, which can be a common catalyst for people with congenital epilepsy.

It didn’t occur to me that what I was experiencing was anything abnormal. My only experience with epilepsy up to that time was my mother, who had her first seizure after becoming pregnant with me (hormones, anyone?) which presented as grand mals – she would have an aura followed by loss of consciousness, no convulsions or tremors. One our favorite family stories involves her sitting at the dining room table preparing what I think was meatloaf, talking on the phone with her best friend Linda, who was the one ultimately responsible for this becoming part of familial lore.
According to Linda, my mother went dead silent for a few moments, followed by a thunk as the phone hit the floor. (This was the 80’s, so the phone was one of those wall-mounted curly-corded varieties.)
Shortly afterwards, she hears a three year-old me over the line:
“Mommy?”
“You tired mommy?”
“Do you need a nap? Is it nap time?”
“I’m not tired, but I can nap with you…”

Once my mother began a treatment protocol of phenytoin, her symptoms were completely controlled and she has been relatively seziure-free for almost 40 years. They switched her to carbamazapine some time ago, with similar success.

Circling back to my own seizures, as I said, due to my only experience with epilepsy being my mother, I had no idea what my brain was doing. It was around this time I started journaling (back then it was more of a diary, with rainbows and unicorns and a completely useless lock on the side) where I would document these events. I referred to them as “dejà-vu” spells and was genuinely curious as to why people didn’t complain about them more often. Comparatively speaking, my seizures then were much milder forms than what I later experienced as an adult, but since I just thought that’s what a dejà-vu was, I never thought to mention it to my parents.

By the time I was 20 years old, they began occurring with increased severity and frequency.
It was around this time that my brother, five years my junior, had his first seizure.

Unfortunately for my brother, he has the type of seizures most people imagine when epilepsy is mentioned. Intense convulsions that have resulted in concussions, broken teeth, ruptured blood vessels in the eyes, etc. I’ve never witnessed one personally as I no longer lived at home when they set in, but from my mother’s description they’re positively nightmarish. The good news is, like my mother, his are 100% controlled by medication.

This was the point where I decided to mention these “episodes” to my primary care physician. Given the nature of my experiences in tandem with my family history, I was referred to a neurologist who, after performing an MRI and a sleep-deprivation EEG, diagnosed me with partial complex temporal lobe epilepsy and put me on a regimen of carbamazapine (Tegretol).

I was well into my college years at this point, and having married young (too young, as it would turn out) I was dealing with multiple stressors in my life: marriage, being recently diagnosed, a full course load, and working in the tutoring lab 35 hours per week. After beginning medication for my seizures, the increased stress and insomnia took its toll, and not only was the medication ineffective, but the frequency of my seizures increased making it very difficult to retain any information from lectures and studying. My grades took a hit, I developed panic attacks and would go several nights in a row with only a couple hours of sleep. I was on Topamax, Paxil, Ambien, and Xanax. I no longer recognized myself.

My neurologist ultimately agreed that this protocol wasn’t working and decided to add an additional anti-seizure med to the mix. I don’t remember which one – they all seem to blur together. This went on for years:

  1. Try a new medication
  2. Medication ineffective, increase dose
  3. Increased dose ineffective, add a second medication
  4. Added medication ineffective, increase dose
  5. Steps 1-4 ineffective, scrap ’em all and start over with a new medication

And on and on it goes.

It never occurred to me to question anything that was happening. It never occurred to me to investigate the success rate of the high-dose medications I was on, nor learn that with every new drug that is applied, it has an exponential drop in efficacy in controlling seizure activity:medication

I trusted that my neurologists knew best, this was my only option, and if I was patient that ultimately I would achieve seizure control once we found just the right medication.

Oh, how wrong I was.

In 2012 I was living near downtown Seattle and had yet another new neurologist. By this time, the internet was a much more resourceful tool (aside from WebMD claiming any symptom you had was cancer) and allowed me to do a much deeper dive into potential alternatives to medication avalanches.

Enter: the ketogenic diet.

I was surprised to learn that not only did the diet have a high success rate in treating pediatric epilepsy, but that its development was for the sole purpose (at the time) for controlling seizures. I accumulated all the information that I could and went to my 6 month follow-up with my neurologist, excited at the prospect that simply changing what I ate could solve all my problems.

Alas, ’twas not meant to be.

My neurologist was aware of the diet, yes, but did not recommend it due to adverse health effects, such as elevated LDL along with kidney issues, and that the diet had a very “low adherence rate” (oh, how those words infuriate me) and that we should proceed with her recommendation for a VEEG study to pinpoint the focus of my seizures as brain surgery was now on the table.

My review of the VEEG study can be found here. It’s pretty amusing. Highly recommended.

By 2017, nothing had changed. I was now on Lamictal with the typical ineffectiveness and gradual dose increases. I had addressed keto a few more times with the same response from my neurologist. In January of that year, my seizure frequency and severity jumped again, and by this time I was experiencing tremors, severe amnesia, depersonalization, and lost consciousness once. It was recommended that we re-visit the topic of surgery and my medication was increased. Again. From 3500mg to 4000mg.

I was, to put it succinctly, done.

In early February I decided, with the guidance of online resources such as The Charlie Foundation, to try the ketogenic diet myself. Keto had hit a certain level of popularity at that point, so finding recipes was simple. My doctors didn’t seem to care that I weighed 287 lbs and feasted on Double Stuf Oreos and entire pans of cinnamon rolls, so eating a high-fat, low-carb diet could only be an improvement. I considered it a very low-risk gamble, particularly when weighed against brain surgery.

I decided to start with a two-day fast, then began day 3 with a pretty basic regimen of eggs scrambled with butter and heavy cream, avocados, olives, bacon…
Needless to say I did not feel deprived in any way.

By mid-March, I hadn’t had a single seizure.
April: Still, no seizures.
May: No seizures, and I was down 30 lbs.

I suddenly became aware of what it feels like to be normal.

My 6 month follow up with my neurologist was that August. I’d never been so excited for a doctor’s appointment in my life.

At this point I had been completely seizure and aura free for six months. Against medical advice (this is my general disclaimer as I am not a medical professional) I had begun tapering off of my medication as a sort of experiment, and possibly became a bit overly zealous in the endeavor, as I was down from six pills per day to one. That’s a drop from 3500mg/daily to 500mg/daily. Oops.

My appointment was with my neuro’s nurse practitioner who, to be fair, is a lovely and open-minded person. Appointment followed the usual pattern:

  1. Weight (oh, you’ve dropped quite a bit – that’s great!)
  2. Blood pressure (look at that, your BP went down as well, great work!)

She then asked me how things had been going, I told her I changed my diet, eliminated sugar and junk food, and had begun exercising. She praised me for my efforts.

“And how’s your seizure activity been?”
“Oh, I haven’t had a seizure since…well, it must be since March now.”
“Since March? That’s incredible – so the medication finally started working?”
“Oh, about that…I actually kinda stopped taking most of them…”
Her: *concern*
“Ok, can you tell me why?”
“Sure. I found that I was no longer having seizures after starting the ketogenic diet in February.”
Her: *puzzled*
“Ah, interesting, and you just…did it on your own?”
“Well, I had guidance from sources I found, but yes.”
“Ok, well, first let me say I’m very happy for you that you found something that works. However, when people go on the diet for epilepsy we usually recommend they be admitted to the hospital for guidance and supervision, especially before we begin to titrate medication.”
“Oh, I understand completely – but it was my understanding from (neurologist) that the diet wasn’t recommended, and that we should stick to medication, which is why I decided to try it on my own.”
“Ok, right…but, well, I mean if you’re having success on it, we should just stick with that. And the dose that you’re currently on isn’t even therapeutic so we can just take you off of it. I do want to make sure we keep an eye on your lipid and metabolic panels, so I’m going to refer you to a ketogenic nutritionist we have on staff – ”
Me: *OMG WHAT YOU HAVE ONE ON STAFF WHAT THE HELL (insert string of mental expletives here ______)*
” – and that way she can help you with food options and blood draws.”
“Sounds great, thanks.”
“Since your seizures are under control, we can probably only have you in every 18 months instead of 6, unless something comes up.”
“I’m ok with that.”

She ran a lipid panel as elevated LDL was a concern for her, made apparent by her notes on my test results:

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That was 19 months ago. I reached out, with no follow up.
I’ve been ghosted by my neurologist. 😂

Summary:
In two years and two months, I have eliminated all seizure activity, lost 145lbs, increased my fitness level via long-distance hiking and powerlifting, and am no longer on any medication, prescription or otherwise.
I have so many questions about why the ketogenic diet is so discouraged and even prosecuted by the medical community, while simultaneously feeling I don’t really want the answers. I fear it has nothing to do with what’s best for the patient.

Lessons learned:

  • Whereas most of the time it’s wise to listen to your physicians, there are times where you need to be your own advocate.
  • Because nutrition policy is so fundamentally flawed, most medical professionals are basing their decisions on these guidelines. In the past two years, I feel I’ve accrued more data on nutrition and diet than any physician I’ve had to date.
  • Do your homework. There is an entire community of academics and medical professionals out there working tirelessly to promote dietary approaches to chronic disease. Find them, learn from them, reach out. I have a curated list on Twitter of good resources here.

I recently did a podcast with Dr. Brian Lenzkes and Dr. Tro Kalayjian. Feel free to have a listen. I also have one coming up with Ivor Cummins, and will update this post with a link.

What do you do when an epileptic falls in your garden?”
“Seizure salad.”

 

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