Zombie Research Institute
I pretty much think of my life since college as one long experiment. Unfortunately I was concentrating on the depression instead of my metabolism...
The Inadvertant Diet Experiments
I started dieting excessively when I was about 15.
Took a drug called Dexatrim, at the time it contained phenylpropanolamine. Didn't know it then, but the anorexia probably kept me from having sleep attacks. Also started drinking coffee at 15. Had to bring my own to school since it was only provided for the teachers.
That worked well for quite a while. But it inverted my sleep schedule, I would read all night, go to school, then sleep in the afternoon. Over time and after college it became steadily became more difficult to maintain that schedule and my weight.
In 1993, Susan Powter came out with her diet book: "Stop the Insanity". I was up to a totally unacceptable 123 pounds so I went on her diet... and that's when the insanity started.
Her theory is that a gram of fat has more calories than a gram of carbs so if you only eat carbs you will lose weight faster. Makes sense mathematically, but not physiologically. (As a matter of fact, the opposite is true.) It also makes you so hungry there is no way you can keep from bingeing. But you don't blame the diet, you blame yourself. So you try harder, cut out all fat. And it gets worse..
Looking back- I immediately started gaining weight. My libido disappeared within weeks. And my moods went out of control. I gained 80 pounds over the next 6 years.
This is what happens on a low-fat high-carb diet if you're orexin deficient:
Unfortunately the depression was so extreme I didn't even care about my weight anymore.
It was the least of my problems.
Wish I would have known what a stellar job I was doing of nuking my remaining orexin cells...
Saved my life.
My husband was diagnosed with diabetes around this time and I started researching. I read all the stuff about carbs making you hungry and insulin making you fat. I think I started eating low-carb even before him. Lost some weight and felt better right away. My mood lifted, I had more energy and noticed I wasn't napping out in the afternoon. Figured it was insulin resistance (I was partly right about that). On our anniversary we would go get sub sandwiches and then pass out on the couch to celebrate.
I wasn't completely carb or gluten free and at some point I figured out I could eat five breaded mozzarella sticks with marinara sauce per day and stay in ketosis. I bought bags of them at the restaurant supply and ate them for lunch for about a year before the dementia started.
Cheese sticks ate my brain.
Also saved my life.
I stopped eating gluten the moment I thought it might be a problem.
This is the email I sent that day:
From: Heidi Lindborg
Sent: Monday, August 13, 2007 9:18 AM
Over 90% of patients with
narcolepsy-cataplexy carry HLA-DQB1*0602.
Heidi's latest experiment on herself: gluten-free diet.
I noticed improvement within 3 days. I made it through a shower without leaving shampoo on my head. Major achievement.
remembered my dad's birthday when I woke up.
took me a while to get going today, but when I did it was better.
no drugs yet. got my scrip but the pharmacy had to order it.
didn't space out in the shower. attention. sequence.
had two tingles in my brain earlier. I hope that was my frontal lobe rebooting. I have missed it.
Within 3 weeks I was pretty much back to my old self cognitively.
Had a lot of interesting physical improvements after that.
My intestines got a lot more sensitive though. Onions gave me terrible cramps.
The involuntary coffee experiment
I have not gone without coffee for more than a couple hours in over 30 years.
Except once. Before my eye surgery. I had to stop drinking coffee and smoking 6 hours ahead of time. 4 hours later my brain stopped. I slept in the taxi on the way there. I slept in the waiting room. They hid me in an exam room and gave me blankets. They woke me up, changed my clothes and took me to the operating room. And the doctor had to wake me up again to give me anesthesia.
MSLT (a sleep test for narcolepsy. Measures how fast you go into REM sleep. Five minutes is the limit.)
I "failed" the MSLT. Well actually, I was defeated by the flaw in the test- it doesn't hold the food variable constant- my results were completely different before and after eating gluten. I brought my own food and ate low-carb before the first nap- latency 10 minutes, no REM. Had a smoke before the second one- latency 12 minutes, no REM. I was tired but could tell I wasn't having any visual symptoms. I knew that meant I was going to fail, so decided to test the carb theory. I went down to the cafeteria and had a giant frosted cinnamon roll (my favorite trigger) before the third test. Latency was 7 minutes, no REM. By the fourth test I could see the ripple pattern as I went under, my latency was 3 minutes and I went into REM two minutes later.
This is me trying to look alert after 8 hours of sleep, three naps and a cinnamon roll.
I went out on the street and had a smoke with the electrodes on.
Everyone asked me if I was okay. I just laughed. Good times.
The disasterous M&M's incident
My husband had a poker party last summer and there was half of a bag of M&Ms left over. I rarely eat chocolate or sugar, but they're gluten free and I ate all of them that afternoon. By evening I was depressed, by 9pm I had suicidal thoughts for the first time in years. No kidding- I was just watching TV and having a smoke and "I should shoot myself in the head" started popping up in my mind. Out of NOWHERE. For NO reason whatsoever. It was fascinating, but not exactly enjoyable, so I decided I should probably just go to sleep. Went to bed and had mild visuals, like scraps of burning paper. Woke up at 3am with a killer migraine. Maybe my worst headache ever. The next day was crippled by TMJ and occipital neuralgia.
This is why I am convinced there is chronic subclinical viral activity.
I have been gluten free for a long time and avoiding arginine since the M&Ms incident.
I got some pills down in Mexico while we were on vacation because I wanted to eat peanuts. I miss peanuts a lot more than gluten.
My improvement has been amazing.
I thought is was working well the first couple weeks, it relieved a lot of the pain in my teeth and face. My TMJ remitted. My trigeminal was feeling much better. And the intestinal sensitivity went away.
And then on the 10th day my entire nervous system rebooted.
All of my sensory nerves came back on. In random order. All day.
It was like having the perfect massage. From the inside.
It's like my neurons have been washed clean. I feel twenty years younger.
I'm. Totally. Serious.
I went to my doctor, told him about it, and he gave me a one-year prescription.
He told me he's heard similar stories before. Magically disappearing aches and pains.
Something radical in my metabolism has changed. I went to visit relatives and both my mother and my MIL thought I lost a lot of weight. I have lost 3 pounds. But my body fat distribution has changed drastically. I am less puffy and have more muscle definition. I have lost inches around my waist. My abdominals are tighter. As are my glutes. And I have not been trying. At all. Actually I have been extra lazy, trying to make myself sit and write.
For the record, the standard dosing is too low.
It only suppresses the sores, I have to take 1000mg valtrex daily to suppress the pain, and more if it is very sunny. And sadly- gluten, chocolate and nuts will render the drug useless for me, I have breakthrough symptoms every time. I feel a whole lot better, but still can't eat peanuts. Sigh.