In my journey to improved health, it has been crucial to be willing to try anything and everything. When working with my doctors, I have followed their advice and been willing to try the medications they have prescribed. This has resulted in my taking some amazingly helpful medications. And some spectacular failures.
This willingness to experiment has extended to the realm of alternative and complementary medicine, as well as to dietary measures. In this post, I will be writing about some of the most important things that have helped me feel better.
When I was finally diagnosed with narcolepsy, about 4 years ago, I thought I would be feeling better in no time. I had faith in my doctor and faith in the effectiveness of modern medicine.
Yet the first medication I was prescribed, Provigil, did not help much for very long. I could take it for a day or two and it would help keep me awake, but by the third day of use I could sleep right through the medication. I would need to take a few days off of the drug before it would help again.
Then it was time to move on to Nuvigil, a somewhat more potent and longer-acting version of Provigil. That worked a bit better, but the side effects – dry eyes, increased cataplexy (loss of muscle tone with emotion), and depression made it difficult to continue.
Next was methylphenidate (MPH), generic of Ritalin, which actually provided me with a bit of wakefulness without horrible side effects. But I required upwards of 50 mg a day to get a couple hours of wakefulness. When I explained that to my doctor, he said it was time to move on to Xyrem.
Xyrem is a medication that addresses the root cause of narcolepsy symptoms, which is the lack of deep, consolidated, restorative sleep. It is actually GHB and gives that deep delta sleep that people with narcolepsy crave.
I had a difficult time starting the medication because it made my Restless Legs Syndrome (RLS) worse. But my doctor coached me through the hard times, and it has made a huge difference in my symptoms. And with methylphenidate in the day, I could have several hours of wakefulness, and start to rejoin the human race.
After a couple years of the Xyrem/MPH combination, I discovered nicotine, in patch and e-cig forms. I have never been a smoker, but many people with narcolepsy do smoke because of the stimulant effects. I had read of parents sticking a patch on their sleeping child for a short time to help them wake up, and wondered if it might help me get out of bed in the morning.
I also have Delayed Sleep Phase Disorder (DSPD) so mornings are particularly difficult for me. I would often wake up early in the morning, feeling great, only to keep waking up over and over all morning long.
One morning, when I woke up the first or second time, I stuck on a nicotine patch. In about an hour, I was awake and wanting to get out of bed. It was amazing to actually wake up and stay awake.
As with all stimulant medication that I have tried, I have developed some tolerance to nicotine, and it no longer wakes me in the morning as well as it did that first time I used it. And I found that if I wore the patch for more than a few hours, I would get anxious, so would need to pull it off. But it did help me squeeze more hours of wakefulness into my days.
Now I was taking Xyrem, MPH, and nicotine, and my life had improved quite a bit. I eventually moved on to Adderall in place of MPH, because it lasts a bit longer and has less of a crash when it wears off. I rarely need to take Adderall anymore, but still take Xyrem and nicotine as important parts of my treatment.
Several years ago I read some information that made the claim that eating a vegan diet would help with diabetes, heart disease, and autoimmune conditions, all of which are a concern in my family. We decided to try it – for 3 weeks – and ended up eating this way for three years.
We felt good about the sustainability of the diet; that we were doing something that would conserve the dwindling resources of the planet. We also agreed that we did not want to be a part of a food production system that treats animals as horribly as the corporate farming in the US. We signed up for a Consumer Supported Agriculture (CSA) box, and learned to eat a lot of vegetables.
I do respect those who maintain a vegan diet, but it did not work well for me. It made no difference in my narcolepsy symptoms, and it became more difficult to maintain my weight. I though I must have been the only vegan, ever, who gained weight! And all of a sudden my trips to the dentist were very unpleasant. I was needing root canal after root canal, and crown after crown. I would get a new inlay put on and then the tooth around it would simply break apart, sometimes at the root line. I had extra fluoride treatments and nothing helped. And my blood sugar was alarmingly high.
Last November, I was starting to feel like I had felt before I started taking Xyrem. I was sleeping off and on all day long, up to 16 hours a day. I had been thinking of trying a gluten free diet for a couple years, and had stocked up on GF flours and snacks. In December I decided to give it a shot, not really thinking it could possibly make a difference, being such a fad and all. (I do not think of it as a fad anymore!) I did know that eating wheat bread made my heartburn symptoms much worse, and was hopeful that I might be able to get off of omeprazole when I stopped eating wheat. And I was able to get off of that medication within the week.
The first few days of eating GF, I felt terrible. I was weak and shaky, and when I stood up I would often start to black out. But after a few days I noticed that I had lost my appetite for bread, cookies, and sweets in general. This was a good thing.
I had joined a Facebook group for people who have narcolepsy and are eating gluten free, and was able to ask questions and get good answers about what might be happening. I learned about ketosis, and that ketosis can be a good thing for people with neurological disorders.
At about 2-3 weeks of GF eating, I started to wake up. Really wake up. Without Adderall. Or nicotine. Or even caffeine. My biggest problem was that it was hard to figure out what to eat. My husband and daughter were still eating a vegetarian diet, as well as eating gluten foods. I decided that I needed to add back in fish and seafood, and, occasionally, meat. I have been dairy-free at time, and it has not seemed to make much difference in how I feel, so I do continue to eat some dairy, mostly fermented dairy like kefir and yogurt, and pasture-raised butter, cream, and cream cheese.
Because of the Facebook groups, I was learning about “The Wahls Protocol,” a book and eating protocol by Dr. Terry Wahls. She is a doctor in Iowa who reversed her MS and got up out of a wheelchair by eating a gluten-free, casein-free, soy-free, legume-free, ketogenic, paleo diet. I was intrigued. She made the case that her eating plan, which was being studied in a clinical trial, would help people with all autoimmune disorders. It was all about eating foods that are very high in nutrition and not eating foods that are inflammatory, low in nutrition, or have a lot of chemicals that bind to nutrients and prevent them from being absorbed. And it was the diet we evolved to eat as hunters and gatherers, before the advent of agriculture, some ten to thirty thousand years ago.
I purchased the book for Kindle and started reading. This lead to reading several other books on variations on the paleo diet, as well as a book on how to save my teeth. That book also recommends a nutrient-dense diet like the diet advocated by the Weston A. Price Foundation.
Phew! So much reading and so much learning!
I have learned a lot about eating in the last eight months since giving up the gluten. I have learned that oats are a problem for me; that if I eat a small amount of them I will experience desperate sleepiness and mild, but long-lasting, cataplexy.
I have learned about eating cultured foods to heal the gut damage caused by inflammatory foods and imbalances in gut bacteria. I have learned to ferment my own foods, and have made dilly beans, dill pickles, fermented zucchini and yellow squash, sauerkraut (so much better than store-bought, canned-in-vinegar kraut), jun kombucha (jun, which rhymes with moon, is made with green tea and honey instead of black tea and sugar), and kefir.
Health hacking is hard work, and takes a commitment to continue learning and trying new things, but I have settled into a routine and now consistently eat a high-fat, moderately low-carbohydrate, high nutrient diet, consisting of lots of vegetables, some low-sugar fruits, meat, fish, seafood, some liver, some dairy, and a lot of nuts. I hope to be exploring the possibilities of raw dairy soon as well.
Earlier this year I decided to do genetic testing through 23andMe. This has given me a lot of information about risk factors and genetic traits, known as single nucleotide polymorphisms or snps (pronounced “snips”). Since 23andMe has been forbidden, by the FDA, to give out health information, I had the data analyzed through other services.
Promethease gave me a wealth of information, and I learned that I carried 2 copies, or was homozygous for, the C677T MTHFR snps. This is related to the liver’s system of detoxification, and means that my detoxification is greatly impaired. This leads to high homocysteine levels which are associated with heart disease, as well as high risk for many other conditions. Treating this defect is easy, though. Eat a lot of green, leafy vegetables for the natural folates they contain, and supplement with 5-MTHF (5-methyltetrahydrofolate).
We are also to avoid taking the synthetic, folic acid form of folate, which we cannot use and can possibly interfere with the detoxification reactions. And, since mercury is one of the toxins that is metabolized via MTHFR, we are to avoid vaccines that have mercury, like flu shots. I recently read that people with MTHFR mutations are to avoid nitrous oxide at the dentist, because we can react badly to it. These are all good things to know!
I also learned that I have several risk factors for ALS, not a pleasant condition to develop, and not a pleasant thing to know about. And aneurysms, both in the aorta and the brain are listed in my risk factors several times. I am hoping to head off both of those conditions through knowledge of the risks and eating a healthy, high nutrient, heart healthy, anti-inflammatory diet.
I also found out that I carry the high risk gene for celiac disease, what is known as the HLA-DQ2.5 allele. It is possible that I do have celiac disease, but I may never know, because I am not willing to start eating gluten in order to have the testing done.
I recently had my 23andMe data analyzed by Nutrahacker, which lists out genetic snps and what they mean, as well as foods and supplements to use and ones to avoid. This has yielded some important pieces to my puzzle.
In many people the tocopherol forms of vitamin E, often taken to reduce inflammation, actually do the opposite and cause more inflammation. I am one of those people, and it is important to avoid those forms of E, which seem to be in every multivitamin ever made, and instead to take the tocotrienol forms.
There were also recommendations that cancel each other out; methyl B12 for example. It appeared multiple times in the “take” column, and as many times in the “avoid” column. Apparently hydroxy B12 is the safest form to take, though, and it is good to know, even if the methyl B12 is hard to avoid because it is in the activated B complexes that are helpful for MTHFR.
If you are living with a chronic illness, it might be a good idea to do genetic testing, such as is offered by 23andMe. When you want your health data interpreted, I suggest you start with Promethease. For only $5 you will get all the information you ever wanted to know, and much you never wanted to know. You will need to sign off on some terms and then link to your 23andMe results.
I realize that this is a huge amount of information for one blog post, and I have only touched on some of the more important, and helpful, health hacks that I have tried. The point is that there is always another layer to explore when it comes to health; always something more to look into.
It is not that I do not trust my doctors or the medical field. But it is true that today’s medical doctors are taught to diagnose conditions and then treat them with medication, rather than looking into the root causes of illness and addressing them through changes in lifestyle. Fortunately this is changing as more practitioners become certified in functional medicine.
If you want to hack your own health, and you don’t want to spend hours a week doing your own reading and research, you need to find a practitioner who has trained in functional medicine. They are trained to look at the root causes of illness and then treat the illness through lifestyle modifications such as diet, exercise, and supplements.
I am hoping to find a functional medicine practitioner someday, and retire from my part-time job of researching my own health issues. It does help that I majored in biology and chemistry in college, which gives me a better grasp of the scientific research in these areas. But now that I’m feeling so much better, I want to be enjoying my life and spending less time on the internet.
How about you? What have you learned about your own unique body and what helps it feel its best? Have you had any genetic testing done, and has it helped you to understand yourself better? Please discuss in the comments below.