Narcolepsy Thoughts

I reached 365 foot miles for the year on Saturday while hiking these slippery boardwalks on the trail to Monticello

Several days after receiving the diagnosis, I was thinking about my symptoms:

I'm pretty sure my narcolepsy symptoms started when my celiac symptoms did. In fact, the fatigue and insomnia I always associated with celiac, were probably due to the narcolepsy. Plenty of other symptoms can still be ascribed to celiac, though. Like the burning fires of Mordor in my stomach anytime I get the slightest bit of gluten in me. But I am wondering about the insomnia that follows getting glutened- is that the narcolepsy or the celiac acting up? Or do they have some sort of symbiotic relationship going on, so it's both of them?

My celiac and narcolepsy issues started the summer I turned 22, when I'd been on my mission for about a year, so 19 and a half years ago. Thankfully I didn't have to come home early, but I was not able to work as hard as I wanted the last 6 months of my mission, which was very difficult.

Yikes. I've been dealing with this for almost half my life now.

When I returned to college after my mission, I was on narcolepsy meds for a year or so, then stopped taking them sometime after we got married because I knew I couldn't be on them while pregnant. It took several more years to get pregnant, but in the meantime, the worst of my symptoms- mainly the insomnia- were pretty much gone. I still had a lot of fatigue and had to ration my energy, but I figured out what I could and couldn't handle, and worked around those limitations. I got very good at coping and at working through the exhaustion. And at saying no to stuff, because I just didn't have the energy.

Fast forward a few more years, and I went gluten free. The constant burning stomach pain and brain fog went away and my energy levels increased. I wasn't nearly as tired all the time and was able to do a lot more than I had previously.

In more than nine years of a strict gluten free diet, I've been able to do so much. Run races, build things, raise our kids, start multiple businesses, and be much more active than I could have imagined possible when I first got sick. My energy levels have fluctuated, but some of that can be attributed to being HSP- certain situations are overwhelming to my nervous system, and therefore exhausting. I did frequently feel tired, but I've spent years, decades even, dealing with near-constant fatigue, so I've gotten pretty good at coping, pushing through, and knowing when to stop, which has allowed me to do so many things.

However, this summer (August, if I remember correctly) something changed and my fatigue levels skyrocketed. Insomnia has been making a comeback and I always wake up tired. Struggling to stay awake while driving (stoplights are the worst) pushed me to go to the doctor and get checked out. I thought it was just thyroid issues or anemia, but all my blood work came back normal. They did another round, testing for Lyme's disease, mono, and the like, and those all came back normal/negative as well.

That was when I got referred to a sleep doctor, who did the sleep study, and here I am.

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As I mentioned in my last post, I've been doing a lot of thinking about narcolepsy and how I feel about the diagnosis.

On the one hand, it's nice to know why I'm always tired and don't sleep well, but on the other hand it's depressing to know that it won't get better without medication (that comes with side effects), and could in fact get worse.

I started taking a medication to help me be more alert during the day, but only lasted four days. The first day I had dysphagia (felt like something was stuck in my throat all day), and while it was mostly gone the next day, I had headaches that worsened to a stabbing migraine by the evening of the fourth day. Which is why I called it quits. I also felt more fuzzy and unfocused than before- definitely not more alert. It took a couple days to get it out of my system and feel more normal. I'm now trying a supplement that so far is promising, even at a low, starter dose.

There is some anecdotal evidence that the keto diet may help with symptoms- my doc mentioned that some people had good results with it. Some people on the forums have had luck with it, others haven't. Interestingly enough, I'd actually started the keto diet the day of my sleep study as an effort to lose weight (and I actually have lost weight- I'm down more than 10 pounds so far, which after watching the scale creep steadily up for the last two and a half years or so, is such a relief).

I think I'm doomed to the low carb thing- my PCOS needs it and a side effect of my celiac disease is that I don't do well with starches and carbs. It hasn't stopped me eating them in the past, but between my weight issues and sleep issues, I think I've finally accepted that it's just going to have to be something I embrace. The good thing about the keto diet (low carb, moderate protein, high fat) is that the fat keeps me from craving all the carbs and starches, which has been a huge issue in the past when I've tried to eat low carb.

From what I've read, a low carb diet, along with exercise and a consistent sleep schedule, are helpful in managing the disease and it's symptoms.

I exercise regularly, but my sleep habits are pretty awful, so I need to work on them. A lot of people with narcolepsy take naps every day, but I haven't had to do that so far, and I'm hoping I can continue to skip them. I just don't have time for them. On the other hand, I don't have time for the repercussions of falling asleep while driving, either.

So far, I've been able to cope with my symptoms, but there have been some times when the only reason I didn't fall asleep at a stoplight was because I refused to close my eyes. Though apparently some people with narcolepsy experience micro sleeps with their eyes open. Just a bit scary. And don't get me started on cataplexy- I'm very grateful I don't have that.

Staying active and busy does seem to help me, but only to an extent. I do reach the point where I'm just too tired to focus and get anything done. Which could explain why I'm not as efficient as I'd like with my work.

As I've done some research, the impact of narcolepsy can be similar to the impact of epilepsy and Parkinson's. But I think that applies to those who have cataplexy (loss of muscle control while still conscious), which I don't.

As exhausted as I constantly am, my symptoms are a lot less severe than many people with narcolepsy experience, so I am grateful for that.

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Thinking about all this, I decided to see if there's a link between celiac and narcolepsy and being gluten free and narcolepsy. I already know celiac and narcolepsy are both auto immune disorders, and once you have one auto immune disease, it's not uncommon to develop others.

There's anecdotal evidence from others with narcolepsy with similar symptoms as me, whose fatigue and insomnia improved when they went gluten free. Others also reported having insomnia when they got glutened. It's so nice to know I'm not the only one with what I thought was a weird, random symptom.

Of course, there's also other people who didn't see any relief from changing their diet. I suspect those of us with more mild symptoms benefit more from changing our diets and exercise. More severe symptoms tend to preclude exercise.

Unfortunately, this is one of those diseases that they just don't know that much about. Classifying it as an auto-immune disorder is a very recent development, based on new research. And like all auto immune disorders, no one presents with exactly the same symptoms, and everyone reacts to treatments differently, further muddying the waters.

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I'm not sure why my narcolepsy symptoms resurfaced this summer. I'm still gluten free and hadn't changed anything else in my diet. Maybe too many carbs or sugars? I've experimented with low carb and paleo diets in the past, but could never stick with them very long. I don't think that I was eating significantly worse than any other time in the past though, so I don't think it was diet related.

Auto immune issues are frequently triggered by some sort of physical or emotional trauma, but since my narcolepsy was triggered almost 20 years ago, I'm not sure if it can be re-triggered? I mean, I've been dealing with it all along, just at a mostly manageable level. I just can't figure out why it's no longer at a manageable level.

Maybe it got worse so I could get a diagnosis and realize that I'm always going to be tired. And I can make changes to improve what I can and change things in my businesses to accommodate my varying ability to focus and think straight. I'm still working on that part, but it's something I am working on.

On the other hand, it has me re-thinking our weekly schedules. We had a busy schedule this past semester, and we won't be repeating it. Sunshine doesn't want to do her nature class in the winter, so we'll be taking a break from that. Her Monday co-op schedule will also align better with the boys' preschool schedule.

We'd planned on doing ski lessons this winter, but I'm really not sure that that's the best use of my energy right now. I want to, but I remember what it was like the last time we did it, when I was pregnant with River, and it was exhausting. Waiting till next year will give me more time to really figure out what I can and can't do, in such a way that I don't spend the next two or three days flat on my back, recovering. I've done that many more times than I should have, and I need to find a more healthy balance.

I started the keto diet (low carb, moderate protein, high fat) the day of my sleep study, three months or so after my symptoms reappeared. I don't know that I've seen any differences in energy/sleep yet, but I do feel better for staying away from starches. Less bloating and fewer intestinal issues, the eczema in my scalp is clearing up (it's caused by eating too many starches and sugars), and I'm finally losing weight. The carb and sugar cravings that usually accompany any low carb, low sugar diet I've tried aren't present, which is a miracle. Not having the cravings means I'm actually sticking to the diet and not feeling like I want to eat all things or turn into a grumpy monster.

Researching symptoms and such has been eye opening. Things that I thought were just me not being motivated enough to do were actually me just being too tired to do. I'm trying to decide if there's a difference between what I've always called being tired, and what the medical community calls excessive daytime sleepiness. I haven't equated sleepiness with tiredness before- in my mind, they're two separate things. But maybe they're the same? Maybe I've been fighting the tiredness for so long that I just don't recognize it for what it is: sleepiness that wants to drag me down every day.

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Narcolepsy feels worse than celiac- more of a sentence. Celiac can be controlled by what I eat. While initially there was a learning curve, I am now confident in my abilities to stay gluten free. It comes at a cost of very rarely eating out, but that's a price I'm willing to pay. Narcolepsy can be improved by diet, but many people rely on their medication to function. Being reliant on big pharma and how much they decide to charge for the medicines they manufacture is not what I want in my life. One medication in particular is super expensive ($100,000+ a year without insurance, and even with insurance the monthly co-pays are expensive), which is ridiculous (right up there with the insulin mess). I know many people are at the mercy of big pharma, but I don't want to be one of them. Losing that sense (illusion?) of control is unsettling.

One thing my doc said to do was to get online and find some support groups. There's a local one that meets once a month, but I haven't had a chance to meet up with them yet. There's several facebook groups that I'm now a part of that have been enlightening, as well as depressing. 

I've found so many people with similar stories as me (and many with different stories and symptoms).  One thing I've seen mentioned repeatedly is the sense of losing yourself, your future, your life. 

I was always a smart kid and graduated in the top 10 students in my class, and was a Commended Scholar (national merit scholarship). I did well the first three years of college, but celiac and narcolepsy were triggered between my junior and senior year.

Senior year I flunked my first class ever, despite talking to the professor and getting a tutor. Thankfully, a lot of students did poorly (it was a 200 level intro to biochem class taught on a 400 level class by a new professor), so there was a significant curve to our final grades. I scraped a D and talked my advisor into giving me a waiver so I could still graduate on time (it was a required class that I'd procrastinated taking). That was such a frustrating time. It didn't matter how much I studied, I could not understand or remember what was going on. 

I no longer feel as intelligent as I once was. I'm still smart, but there's part of me that's gone, and will never return. Literal loss of brain cells (from the narcolepsy) will do that. 

The weird thing is that I've always blamed it on celiac, and while the brain fog is definitely attributable to celiac, lack of comprehension due to always being tired is because of the narcolepsy. And for some reason I'm having a hard time with that. Or maybe it's just reopening old wounds that I'd pushed to the cobwebby recesses of my tired brain.

I'm definitely still a functioning person, and have managed to find ways of working around how I feel on any given day, but it sure is nice to know why I always feel so tired and why some days it can be a challenge to get anything done. I am very blessed that I can be a stay at home mom. I don't think I could hold a full time job and do a good job at it right now. Many people with narcolepsy end up on disability because they can't keep a job (falling asleep, not being able to get up and get to work in the first place, cataplexy attacks on the job, etc).

But I also wonder about my productivity. How much is my type A personality, pushing me to keep going, and how much is the milder symptoms I'm exhibiting? I believe there's testing that can be done to see the state of the brain cells in question, but I think it involves a spinal tap and I'm not sure if I'm up for that.

One thing I've noticed- I very rarely just sit still and do one thing. I don't read as much these days because I'm so busy, but reading is the rare activity that I'm not also doing other things during. I never just sit and watch a show- I'll be on my computer, working or doing something with my hands (making, sewing, etc), so unlike many narcoleptics I can actually make it through a whole tv show and even an entire movie. How much is deeply ingrained coping mechanisms and how much is the milder form?

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As you can see, there's a lot of questions I don't have answers to, but I will continue to think about them and I've got a list of things to talk to my doctor about when I go back in a few weeks for a followup.