My sleep disorders specialist called on Thursday and revealed the results of my sleep study:
"Keri, we have a serious problem here. You are extremely, extremely tired. You fell asleep each time you took a nap. (If you remember from my last post, I swore I didn't fall asleep once. And still to this day would bet big bucks I was awake the entire time!) Not only did you fall asleep, but you did so in an average of 2.5 minutes. On top of that, 4 of the 5 naps you went into REM sleep--the deepest sleep. So what all of this means is that you have a disease called narcolepsy."
Say what?!?!
"Based on your history of autoimmune diseases (Hashimoto's Thyroiditis and Celiac's), your symptoms, and failure of the sleep study, it all makes sense. So what we do is start you on Nuvigil. It's the Riddalin of the 21st century without the side effects. (What big whig CEO's and shift workers use.) Nothing can cure narcolepsy, but the symptoms are treated through medication to hopefully bring relief."
I was shocked. Totally stunned. And then scared. Thoughts flooded my head: I don't want to be on that type of medication! What about still needing to straighten out my thyroid meds? Will that make a difference? What almost 23 year old is diagnosed with thyroid cancer, celiac's, and narcolepsy all in a matter of 8 months? I'm officially a FREAK!
After this weird "dream" ended and I got a grip on the situation, I went into medicine mode. I read countless studies, experiments from Stanford, publications in the New England Journal of Medicine, and reviewed research conducted by inhumanely smart Chinese scientists.
In a nutshell (and a language we all can understand) this is what I gathered:
Narcolepsy is a rare sleep disorder causing excessive daytime sleepiness, symptoms of abnormal rapid eye movement (REM) sleep, disrupted nocturnal sleep, and cataplexy. Not much is known about the disease, but in recent years there has been more evidence confirming it to be autoimmune related. As with all autoimmune diseases, your immune system mistakenly attacks and destroys healthy body tissues. Additionally, I was told in high school when I was diagnosed with Hashimoto's that once you have one AI disease, you're very likely to have two, if not 3 at some point in your life. While that isn't true for everyone, clearly I have reached "two's company, three's a crowd," status. Yippe! Ha.
But back to being a Narc ;) The disease comes from a lack of hypocretin--a hormone that promotes wakefulness. In narcoleptic patients, they are missing the brain cells that produce this hormone. Recent studies are showing a link between narcolepsy and a variant for the HLA (human leukocyte antigen) gene. This HLA gene is what our immune system uses to differentiate between our own cells and foreign cells. Because of this variant, my body is attacking those 10,000-20,000 hypocretin producing cells, out of the billions of cells in my brain, leading to the autoimmune disease. And interestingly enough, I found in my studies that the HLA markers for Celiac's and Narcolepsy are almost identical, leading to more evidence for my diagnosis.
Are you lost? If not, congrats! That is a lot of science to comprehend. I eventually stopped researching because it was leading to studies about relating Narcolepsy to coming down with other neural degenerative diseases like Alzheimer's, at an earlier age. At that point, I decided I'd had enough of trying to figure myself out. It was easy for a little bit to feel sorry for myself and wonder why it was all happening to me, and allowing panic to set in about all the "fun" I have to look forward to as I grow older. But after a few days, it all began to clear.
If these are the 3 AI diseases I'm being handed, then in my opinion I'm blessed. There are over 90 autoimmune diseases, and some are absolutely terrible compared to the 3 I have. None can be cured. Only the symptoms can be managed. But I can think of tons of situations that are far worse than my own. I also know that I have been given the strength to handle this new situation. God won't leave me hanging. Plus, hopefully by the time I reach the senior citizen discount, there will be major medical advancements allowing me to regenerate/clean my immune system. Studies are currently in the works!
Now for a little dose of good news. My healthy diet already supports immune health. Also, I have a big appointment on Tuesday at RedLine pharmacy to review the full hormone panel I went through a couple weeks ago. I have major expectations. I've heard wonderful success stories about regaining control of the crazy world of hormones and can only hope I have the same results. More about that later this week.
So. With all of that being said. Who want's to switch immune systems???
Now, I'm off to sleep ;)
Hi,
ReplyDeleteI have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron