Are You Sure Your Fatigue is Caused by MS & Not a Sleep Disorder?
As a person with MS, I know first-hand how fatigue can crush your day. The family plans, the appointments, the job demands, the hopes to get out and exercise or socialize—all can fall victim to a sweeping case of fatigue.
For me, it means I can no longer commute to a job (the sensory overload exhausts me, cognitively) and that I have frequently needed to nap during the day when I should be working, as many as nine to ten hours a week. I don't get paid if I don't work, so that's not an option… and yet the need to sleep can override every notion I have of ambition.
When daytime fatigue is actually an undetected sleep disorder
But here's the thing: I'm also a sleep health professional. In the past, I've worked in sleep labs as a board-certified sleep technologist, and I currently write for private sleep physicians and sleep organizations. My credentials include one certifying me as a clinical sleep health educator.
And one more thing: I had a sleep study (my second one) last September and, guess what? I have a sleep disorder.
To be specific, I was diagnosed with obstructive sleep apnea (OSA).
What is OSA?
OSA is a sleep breathing disorder in which the upper airway collapses during sleep, creating lengthy cessations in breathing (apneas).
Though perfectly healthy people can experience apneas while asleep, they usually experience less than 3 per hour. People with sleep apnea are diagnosed when it's shown they stop breathing at least 5 times an hour, for at least 10 seconds at a time. It only gets worse from there: I've had patients who've stopped breathing, for at least 10 seconds, over 120 times in a single hour.
This failure to breathe can be blamed on a number of things, including obesity and oversized tissues in the neck, such as the tonsils, uvula, or tongue. When the body relaxes, the tissues lose their tone and collapse into the airway, creating an obstruction.
Other ways to exacerbate mild cases of sleep apnea include consuming alcohol before bed or using certain drugs to relax to the muscles, manage pain, or facilitate sleep.
It turns out my fatigue could have been caused by more than just MS. Or maybe this daytime fatigue wasn't fatigue at all, but excessive daytime sleepiness.
I was reminded in a flash that not all health problems can be blamed on MS.
Some history, for context
It's here that I need to back up a bit.
My previous sleep test (in 2010) did not render results that could be turned into an actionable diagnosis.
Instead, I was given a more vague diagnosis at that time: UARS and "possible" IH.
What is UARS?
UARS is upper airway resistance syndrome, and it describes problems with breathing during sleep that don't result in OSA outcomes. I didn't have long cessations in my breathing and my levels of blood oxygen didn't drop, two key markers of OSA.
In my case, UARS is caused by narrow airways. There's just not enough space in my throat, palate, and nasal passages to facilitate clear breathing as I sleep. (I probably should have had my tonsils out as a kid.)
Instead, I snore as the tissues in my airway relax. That added resistance awakens me from the deeper, more healing stages of sleep. This is called sleep fragmentation, and it's terrible for your health and well being.
For UARS, treatment options are limited. This is partly due to the fact that sleep physicians don't even agree on its definition. Some think of it as a precursor to OSA, while others think it's a separate sleep breathing disorder.
Because of this failure of consensus in sleep medicine, treating physicians don't really know what to do about it. Meanwhile, insurance payers balk at paying for therapies for such questionable diagnoses. The result? No insurance coverage for the therapies most doctors would like to prescribe—PAP therapy or oral appliances—to treat UARS.
In my case, I paid the $1000 out of pocket for an oral appliance, which my dentist fabricated for me and which more or less served me for over six years.
I say "more or less" because, at that time, oral appliance therapy was a somewhat experimental therapy. There weren't ways to prove its effectiveness in actual patients, such as in-lab titrations. Or if testing could be done, insurance wouldn't pay for it.
My snoring stopped for a while, yet my fatigue remained a problem.
What is IH?
Meanwhile, I had this other "possible" sleep problem.
IH stands for idiopathic hypersomnia. Hypersomnia means "too much sleep" and suggests a chronic problem for people who get regular sleep at night and still need to nap during the day.
It becomes idiopathic (mysterious) when no obvious causes can be given for excessive daytime sleepiness.
Modafinil is a wakefulness drug typically prescribed for anyone with objectively measured hypersomnia. This includes people with shift work disorder or narcolepsy, as well as those with chronic illnesses such as MS. It can also be prescribed for those with IH.
Note: My "possible" IH diagnosis came before I was diagnosed with MS, so there was no way to confirm that I might have hypersomnia that was directly related to my condition.
I think my sleep physician called it "possible" mostly because he was hedging his bets on the UARS diagnosis. Even when a sleep breathing disorder can be diagnosed, some residual hypersomnia may still occur. My hypersomnia could only be "possible" until we could isolate an identifiable cause.
When MS came along, it fit the bill.
So... does MS cause my fatigue?
I finally stopped using the oral device as it no longer seemed to "fix" my snoring. I also began to experience pain in my TMJ (temporomandibular joint), and we couldn't say for sure it wasn't MS related.
But even worse: I was still so terribly sleepy! You know how it is: you get up, take a shower, and need a nap. You go to the store, you come home, you need a nap. You go for a walk, then turn around and come home because—you guessed it—you need a nap.
My dentist was disappointed the oral device no longer worked, but still suspected I had OSA. He wrote a recommendation letter to my primary care physician suggesting I do two things:
- Visit an ENT (ear, nose, and throat) specialist to make sure I didn't have upper airway obstructions (such as polyps) that could be easily removed
- Have a second sleep study to rule out sleep apnea
It took me two hours to get to my ENT appointment, but the visit lasted all of five minutes. Nope, nothing abnormal here, the ENT said. I just have very narrow airways. Surgery would not be useful for me. (That came as a relief.) He suggested I seek a prescription for PAP therapy.
Then I had my sleep study. This time, instead of a full overnight lab test (the kind I used to administer at the clinic), I used a simple home sleep apnea test to help rule in— or rule out—the sleep disorder.
The ENT, the dentist, and my sleep physician were all correct. I had OSA, but even more important, I now had an opportunity to figure out what was causing my daytime fatigue.
I took home a preset auto-PAP machine the next day. PAP stands for positive airway pressure, a mechanical therapy which delivers pressurized air to your airway through a mask to help splint it open so you can breathe without obstructions as you sleep.
Literally overnight, I went from averaging over 10 apneas an hour to less than 2.
Intellectually, I knew the therapy was working, it's precisely the kind of thing a sleep health educator like me would understand, clinically.
But let me say this: I could FEEL the difference. Within two weeks, I had completely eliminated the need for daytime naps.
I stopped taking the modafinil three weeks ago. I wanted to know: Was I awake during the day only because I was taking it? Could it be possible that my fatigue had been taken care of by PAP therapy?
Dear MS friends, I have taken exactly 2 naps since September 30. I wake up refreshed, my cognitive fog is gone, and I feel energized all day long. My days of taking modafinil are over.
I still get fatigued when I circulate in crowds— sensory overload is still my Kryptonite. And undue stress still takes a toll, interfering with sleep (if I let it). If I stay up too late, eat poorly, or fail to get enough exercise, my body feels it, my speech jumbles, my leg tremors, and stomach problems arise— my familiar reactions to autoimmune disease.
But what about the morning lassitude and daytime fatigue? Gone.
Have MS? How's your sleep?
I urge anyone with MS to share their concerns about daytime sleepiness with their doctors.
Fatigue is a life-stealing, ambition-slaying symptom of MS, and it is real as can be. But even if you have MS, you might not be able to assign all of your fatigue to your condition. In fact, it may not even be fatigue at all. It may be excessive daytime sleepiness.
Sleep disorders are famously silent and deadly. They are also quite common among people with autoimmune or neurological conditions. And untreated sleep disorders may even become covert triggers to relapses.
Wouldn't you do everything you could to prevent a future relapse?
My primary care physicians were sharp enough to look into sleep disorders, but take it from me, many aren't. If you get a blank stare from yours when you bring up concerns about daytime sleepiness, try asking your neurologist instead. They're in an excellent position to pursue diagnostics to identify and treat any hidden sleep disorders you may have.
If your case is anything like mine, you'll be sorry you didn't do this sooner. I can't believe the energy and mental acuity I have these days. I have my auto-PAP machine (and my healthcare providers) to thank for it.
How many specialists did you see before finding "The One"?