Narcolepsy, Necrophilia, and National Public Sleeping Day

insomnia and narcolepsyThis morning while trolling the interwebz, I found an article that caught my attention. Today is National Public Sleeping Day. According to the article, National Public Sleeping Day was established on February 28, 2011, and it is celebrated by taking a nap in public.

A 2012 study by the Centers for Disease Control and Prevention found that 40 million workers in the U.S. get fewer than six hours of sleep a night, significantly less than the seven to nine recommended by the National Sleep Foundation. 20% of vehicular crashes in the U.S. are caused by drowsiness, approximately 100,000 per year. Sleep deprivation is very often due to unrecognized sleep disorders like obstructive sleep apnea, narcolepsy, anxiety, and other social factors.

I’ve had a tough time with my sleep patterns since 2003, which is when I first began seeing a sleep disorders specialist. I was originally diagnosed with upper airway resistance syndrome. In patients with UARS, sleep quality is disrupted to the point of causing clinical consequences such as difficulty initiating or maintaining sleep (insomnia), non-refreshing sleep, or excessive daytime sleepiness. Further sleep tests, such as the multiple sleep latency test, confirmed that I also have 5 of the 5 markers for narcolepsy: Irresitable daytime sleepiness, sudden muscle weakness, sleep paralysis, hallucinations, and microsleeps with automatic behavior.

provigilFor the last 8 years, I’ve been treated with Provigil (or Nuvigil, which I didn’t like as much, but has a much more awesome website.) As I gained weight, the UARS progressed into Obstructive Sleep Apnea (OSA). In the past nine years, I’ve had 8 overnight sleep studies, met with 6 sleep specialists in 4 states, and came to the conclusion that the only thing that would successfully treat the symptoms of my sleep apnea was massive weight loss. All of my sleep doctors recommended bariatric surgery, which is one of the reasons I chose to have gastric bypass.

Most of the time, I feel like I can get enough sleep, either by medications, exercise, naps, or caffeine. But since the beginning of the year, my narcolepsy symptoms have been rearing their ugly head again. I’ve had several cataplexy attacks, microsleeps, and the neurological symptoms I often have when I’m having a particularly irresistible sleep episode mirror my episodes with reactive hypoglycemia. I have appointments in March with my sleep specialist, an ENT, and endocrinologist.

Many people have strange ideas about narcolepsy, and sometimes all they’re aware of is references in pop culture (like in the movie Patch Adams). One of the funniest things about telling people I have narcolepsy is when they reply “And that’s something you share publicly?” Apparently, many people confuse narcolepsy with necrophilia, which I indeed do not have. Phew!

So, here’s to a restful day. Fluff up those pillows and enjoy a nap for National Public Sleeping Day!

Wordless Wednesday: Wires and Electrodes and Cannulas, Oh My!

sleep study electrodes

Wordless Wednesday: Overnight Monitoring

overnight pulse oximetry

Maybe this time, I’ll get the answer I need to help my sleep improve…

TMI Friday: Being on Steroids for Lousy Lungs can Give you a Better Rack

sexy hospital gownIn the past month, I’ve filled over 20 prescriptions. In addition to playing “profession patient”, I’ve become the Foursquare mayor of several different pharmacies and medical clinics. I feel like my local Walgreens is the pharmacy equivalent of Cheers – “where everybody knows your name” (In fact, thinking about it makes me want to drown my sorrows in a Flaming Moe).

It started with seeing the hormone doctor. He put me on progesterone, which was supposed to temper my mood swings, make me sleep through the night and help me lose weight. The hormone pills didn’t help… Despite having the obvious signs of progesterone deficiency, the lab results showed that my normal hormones with vitamin/mineral deficiencies. My Vitamin D was low enough that they gave me an osteoporosis-fighting prescription drug.

About a week later, I started retaining water like a bloated water balloon. My blood pressure reading was sky-high, despite no prior signs of hypertension. So I went to my primary care doctor who gave me Lasix, a diuretic to help my body drain off the water weight and lower my blood pressure. It literally gets you running to the restroom every 30 minutes. Lasix makes your body deficient in potassium, so I’m taking a potassium supplement too. I got some sexy compression stockings to help my circulation and force out excess fluid in my legs. And you know how I had to get my wedding ring cut off a few weeks ago? My replacement cubic zirconia ring, which is 2 sizes larger, is already too small because of the swelling in my hands.

Then the poor air quality caught up with me. I started coughing and wheezing when I was outside, or whenever I exerted myself for anything beyond climbing a flight of stairs. I was choking and coughing in my sleep, which is not a good sign with sleep apnea. I started having constant chest pain. When I presented for Ignite Salt Lake, I thought the tightness in my chest was from nerves…but it was pleurisy. I was in urgent care with an asthma attack 2 weeks ago, where they sent me home with steroids and a big box of nebulizer vials. Since then, I’ve been back to urgent care, spent a long day in the ER, and have seen my new pulmonologist. He’s treating my dyspnea and sleep apnea problems more aggressively, and he’s strongly suggesting surgery. After lab work, chest x-rays, pulmonary function tests, arterial blood gasses, and lots of waiting in freezing cold rooms in thin hospital gowns…I’m worn out. The meds have made me gain weight at a rate I can’t seem to control (although I know most is due to fluid retention rather than bad eating habits).

So what’s the perk with all these steroids and weight gain? My boobs. I wasn’t small to begin with, but I’ve gone up almost two full cup sizes so far in 2011. A new bra I purchased a month ago leaves me spilling out. My newest blouse needs to be safety-pinned between buttons. People are no longer making eye contact with me in public, but they’re definitely looking. I don’t know how much of this excess size will stick around when my body calms down, but it was perfect timing for filling out my Valentines Day linger aie. If you’re considering a breast augmentation, maybe you should try going on steroids first.

Happy TMI Friday everyone!

Insomnia and Hypersomnia

The insomnia monster is visiting me regularly these days, or nights rather. It’s been a while since I’ve blogged about my sleep issues, so what better time to write about it than in the middle of the night?

Since my mid-teenage years, I’ve had such irregular sleep patterns. Or “poor sleep hygiene” as a sleep specialist would label it. I vacillate between insomnia to hypersomnia, particularly excessive daytime sleepiness. Despite my desire for a useful and restful 8 hours at night, it’s extremely rare. I’m frustrated with the insomnia to the point that it keeps me up even more. Days are unpredictable and often doze into microsleeps. If I lost my access to Provigil and caffeine, I don’t know where I’d be.

I had my first overnight sleep study in 2004. I was diagnosed with upper airway resistance syndrome, which is a precursor to obstructive sleep apnea. I tried using CPAP therapy for 6 months, and it honestly hindered my ability to sleep. My doctor advised weight reduction, which has been my constant struggle since my early teen years. Unfortunately, it’s very difficult to lose weight when you are getting inadequate sleep. Over the next several years, I’ve moved from state to state, never having continuous care with a single sleep specialist.

Through 2008 and 2009, my symptoms worsened and I accepted that I have sleep apnea. Despite my hatred of the CPAP mask, I have accepted it as a part of my life.

I have tried a variety of CPAP masks over the years…full face, nasal pillows, comfort gel. And honestly?  NONE OF THEM ARE TRULY COMFORTABLE. It comes down to what you can tolerate enough to actually fall asleep. I’m certain hundreds of hours of sleep have been lost, directly due to the fact that I was stressing about the ugly and awkward mask on my face. I joke that my bedside table is a “graveyard of rejected CPAP masks.” I cannot even begin to fathom the cost of all the medical equipment, polysomnography testing, and doctors visits.

I’ve been actively working towards weight loss the past 6 months. Unfortunately, I feel like I’m making negligible progress. I’ve had 6 doctors in 4 states urge me to seriously consider bariatric surgery. All of them are certain that if I drop 80+ pounds, the chest and throat obstruction that cause my sleep apnea will practically disappear. I’m wondering how many more conservative means I need to exhaust before I can go under the knife knowing that I’ve done all I can do? I started going to Curves Fitness, and hope so deeply it could be the answer I’ve sought for successful weight loss. Unfortunately, I go into every weigh loss attempt with that attitude, and usually give up after months of effort that don’t yield results.

I would love to be healthier, leaner, and could sleep without the restraint of a CPAP mask on my face (and to travel without lugging around the CPAP machine!) I just need to keep trying so I can make it happen, and it might be with the help of a surgeon at this point.