Can't Sleep and Can't Stay Awake
I was a surgeon. I thought I knew a little bit about sleep. I guess, being a specialist, I should have known that the discoveries and advancements in sleep medicine were no different than my own specialty.
Getting a diagnosis
As the literature suggests, it took nearly a decade to diagnose my narcolepsy. In retrospect, I understand why that is, but it is not very satisfying when you are in the middle of the process. Sleep deprivation wreaks havoc in our lives, but manifests in very different ways for everyone. Unfortunately, that makes it nearly impossible to diagnose narcolepsy early. It really is a process, and that process makes those of us that are finally diagnosed with narcolepsy feel lost in the system and kind of overlooked or neglected. Having practiced medicine, I don't think that is necessarily true, but the road to making these sorts of diagnoses is long & arduous. And yes, it does require tenacity on the patient's part to advocate for themselves to finally get to these difficult types of diagnoses. I'm not saying that it is fair or right, it's just the reality.
Fatigue versus excessive daytime sleepiness
I have other medical issues beyond narcolepsy that cause chronic fatigue and muscle fatigue. So while being diagnosed with narcolepsy (and treated) has made a tremendous difference in my life, I am not free of fatigue. Sometimes fatigue is hard to differentiate from excessive daytime sleepiness. And all of this combined pathology is what made knowing whom the next medical specialist to see or the next test to get all the more difficult.
The beginning of my journey
When my journey started, my primary physician ordered all of the appropriate tests for the kinds of symptoms I was experiencing. This resulted in starting with endocrinology. I had extremely low testosterone, and so we figured that was that. But we also checked all of the other appropriate boxes (explored pituitary and thyroid issues etc.). The endocrinologist did ask that my primary doctor order a sleep study and of course my insurance required a home study (which, at least at that time, were worthless). That sleep study suggested I had no sleep issues. Of course it did...
After a year of increasing testosterone replacement doses, I ended up with DVTs and PEs. And that was that. So, I had to start seeking other specialists. Because of other symptoms I was experiencing, I started with rheumatology and GI. I thought maybe I had some inflammatory autoimmune disorder. But ultimately those specialties found nothing,
Working with a neurologist
I was also having neurological issues, so my next step was trying to find a neurologist for evaluation. The neurologist I ended up seeing was primarily a sleep specialist. We looked into MS and things like myasthenia gravis and found nothing. So he ordered a sleep study in his lab.All his lab found was very mild apnea and severe restless leg syndrome. So we started treating the RLS. Eventually I started using autoPAP and then CPAP, but my symptoms continued to worsen.
Maybe this is narcolepsy
I was becoming quite frustrated. I could no longer see patients. I could barely drive for 15 minutes without falling asleep. I couldn't sleep and I couldn't stay awake. And everything started to collapse. I was in pain all of the time. My blood pressure was through the roof. I had no strength. My IBS was nearly uncontrollable and I had urinary incontinence to boot. I was 48 years old and I could not get any answers for all of this. I finally suggested to the sleep specialist I was seeing, "Maybe this is narcolepsy?" "No no, this is not narcolepsy. Narcolepsy is very different." And at that point, I decided I better get another opinion.
I found a younger narcolepsy specialist. He had a fantastic lab. We immediately did a sleep and subsequent nap study. I was in REM within 10 seconds of the tech telling me to go to sleep. My sleep was so fragmented, it was no wonder I was in such sleep deprivation. And I had 3 previous sleep studies in a lab that found none of this. Finally in October of 2019 I was able to start treatment. It took me 2 years of treatment to get me into nightly restorative sleep and medications effecting daytime wakefulness, to start feeling human again.
Navigating my narcolepsy journey
I still have significant medical issues that we are struggling to understand. I am on disability. My marriage fell apart. But I am functional again and can take care of myself. I would not have thought this was where I would be at 52 years of age, but here I am. This is a difficult journey that is not easy to navigate. It was difficult for me to advocate for myself as a physician. I can only imagine how much more difficult it is for people with no medical background.
My daughter's diagnosis
The final kicker is that, while we have not found a genetic link for narcolepsy, it is observed to be familial in nature. My 16-year-old daughter was struggling tremendously over the past 2 years. And as I watched her, it hit me really hard one day what I was seeing. I discussed it with my sleep specialist and he agreed that we needed to get her in the lab. I was able to stay at the center the night she had her study. And I stood there with the techs observing that her sleep was every bit as fragmented as mine.
I guess if going through all of this helped us diagnose her after only 2 years, then the journey has been worth it. After 6 months of treatment, her world is already returning to normal. For that, I am thankful.
Want to submit your own narcolepsy story? Visit our stories page.
How important is following a daily routine for managing your narcolepsy?
Join the conversation