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…

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.

Public Service Announcement: Never Sleep With a Laptop

I am guilty for spending hours in bed with my laptop. And pretty often, I fall asleep with my laptop on my bed. Usually, the computer will go into standby mode after 30 minutes of inactivity. When I woke up this morning, I was shocked to see this huge blister on my hand:

I was puzzled…where did this blister come from? It didn’t look like a spider bite.  It didn’t look like any of the crazy skin reactions I get when I’m allergic to something. It looked like a burn…but I didn’t remember burning myself.  I reached over to my laptop to update my Twitter feed with a Twitpic (of course!)

I went to my doctors’ office, and confirmed that it was indeed a 2nd 3rd degree burn. I was told to lance the fluid when the swelling got too intense, slather it often in ointment, and keep it covered. It was so oozy that I went through a box of my Band-aids at home within 2 hours. So I headed to Sam’s Club for a bulk box of Band-aids.In doing more research, I found out that burns and fires from overheated computers are quite common. Particularly from laptops in bed. High functioning processors can clock heats as high as 170 degrees F (80* C). That’s enough to cause a burn!

Moral of the story? Don’t sleep with a laptop, no matter how tempting it might be. You’ll just be burned in the morning.

Midweek Miscellany

Last week I volunteered to chaperone Rosie’s 3rd grade field trip. We went on a hike in Provo Canyon and to the BYU Bean Life Sciences Museum. I wish that I’d had my good camera, but I snapped this pic on my Blackberry at Bridal Veil Falls. I had forgotten how beautiful the canyons are here in Utah. I live practically at the mouth of Spanish Fork Canyon and need to take advantage of the early autumn beauty.

This morning I dropped Taylor off at the airport. We had to wake up at 4:30 am to get him to the airport on time, so I feel like a zombie today. It was so nice to have him here for five whole days. Sunday evening we had a birthday get-together in Lehi with friends and family. We caught (500) Days of Summer on his birthday, and I think it’s one of my favorites of 2009. We also watched a few other random movies courtesy of the local library. It was very much-needed spouse time.

I’ve been experimenting with my banana bread recipe lately. Some batches have turned out awesome, some have been mediocre. It’s definitely better with butterscotch chips than chocolate chips. I’ve been using cocoa powder in some, substituting different pudding flavors, adding this and that. Once I think I’ve got the revised recipe perfected, I’ll post it.

Today I had an appointment with my sleep specialist in SLC. Dr. Farney is the first sleep specialist I ever met with, and the best out of the 4 that I’ve worked with. I got him caught up on the last five years of my health and sleep history and discussed details of my finally successful CPAP therapy. I told him how my ongoing complaint continues to be excessive daytime sleepiness, regardless of how many hours of sleep I get at night. I’m going to give Nuvigil a try, if only because the website makes me laugh. He also suggested I follow up with another doctor about some pesky symptoms that may point to a condition I’m pretty sure I have (which consequently exacerbates sleep apnea). Good thing I’ve got great insurance for the rest of the year.

I found my Ipod that had been missing for three weeks. I had searched high and low, through every room of my house and the car. Where did I find it? In the purse pocket that I usually stash it…folded between a piece of paper. Just my luck.

Didgeridoo for Sleep Apnea???

Ever heard of a didgeridoo? I read a very crazy news article from Reuters this weekend that talked about how regular didgeridoo playing can help with sleep apnea:

Regular didgeridoo playing reduces snoring and daytime sleepiness, finds a study published by the British Medical Journal. Snoring and obstructive sleep apnea syndrome are common sleep disorders caused by the collapse of the upper airways.

Reports of didgeridoo players experiencing reduced daytime sleepiness and snoring after practicing, led experts in Switzerland to test the theory that training of the upper airways by didgeridoo playing can improve these disorders. They identified 25 patients with moderate obstructive sleep apnea syndrome and who complained about snoring. Patients were randomly allocated to an intervention group (didgeridoo lessons and daily practice at home for four months) or a control group (remained on a waiting list for lessons). Compared with the control group, daytime sleepiness and apnea scores improved significantly in the didgeridoo group. Partners of patients in the didgeridoo group also reported much less sleep disturbance.
The authors conclude that regular training of the upper airways by didgeridoo playing reduces daytime sleepiness and snoring in people with moderate obstructive sleep apnea syndrome and also improves the sleep quality of partners.

I’m sure some of you are sick of reading about the sleep problems that I’ve had for so many years, but how could I not share this bizarre nugget of medical research? I’ve been using the CPAP machine for the last 5 nights, and so far haven’t had much relief for my daytime sleepiness. According to my sleep tech friend Lori, it’ll be at least two weeks before I have a real marked difference in my sleep/wake cycle. I am dedicated to finding a way to finally have restful sleep, and I wonder if I’d have any luck with the didge. Course, I’m not sure I’d want to invest in the very strange instrument without renting one first, and I have no idea where I’d rent a didgeridoo. Maybe I could join an Australian Club, or hang out at the Australian Consulate’s office. What do you think, does this seem like craziness, or do you thing there’s something to it? One thing’s for sure, I could totally pull off the Aboriginal hair…after a night of the CPAP headgear, my hair look like a banchee!

Sleepin’ Sexxxy Part II

Today my CPAP mask came in the mail, and I’ll be able to try it out tonight. Prior masks have only covered my nose…this “full face” mask covers my mouth and nose. I tried it out for about 10 minutes, and it’s really uncomfortable. Most people say they can’t stand it at first, but adapt to it once they see the benefits. I’m trying to have my happiest and excited expression on my face, but the mask pretty much covers it all. It also does a number on my hair. But if it means I finally get restful sleep after 6 years, it’ll be worth it.

Wish me luck!

Sleepin’ Sexxxy

I met with Dr. I today to discuss the results of my last sleep study. He said my daytime sleepiness is caused by sleep apnea, pure and simple. No narcolepsy, just obstructive sleep apnea. When I had the nose mask on a low airflow (6) I had about 10 disturbances per hour with snoring. When I had a full face mask on medium airflow (9) I had only 2 disturbances over several hours with no snoring. He said if I stick with this mask with a chinstrap, I should have marked improvement in a few weeks. So now I get to put on this lovely mask along with my bedtime attire. Sexy, eh?

What the doctor said

All hooked up last week

Yesterday afternoon I had the quickest doctor appointment of my life. I arrived at the office about 4:10, and I was back to my car by 4:25. Seriously??? When does that ever happen. I only had to pay $1 for parking instead of the usual $5 (which by the way is really lame to be forced to pay for parking when you’re already paying your doctors. The joys of living in an urban metro area)

The bad news is that there wasn’t a lot for the sleep doctor to report about my polysomnography test from last week. He had ordered the CPAP version; but even after a clearly marked written order (and a lot of arguing on my part), the sleep tech only gave me an NPSG test (for new patients). Dr. I said that he hadn’t yet dictated my whole report, but that my sleep structure was almost identical to my last test in 2007. Approximately 10 disruptions per hour, similar oxygenation, similar REM sleep time, mild-to-moderate snoring (which Taylor doesn’t agree with. haha) Dr. I was really upset that I basically had the test for nothing, and he promptly got on the phone with the director of the Sleep Disorders Center at Piedmont Hospital to make sure that I don’t get billed for the erroneous study. Dr. I apologized to me profusely, he waived my copay, and set me up for the CPAP study in his VIP suite at Georgia Lung Center in Austell in March (longer drive, but nicer facility and it includes breakfast)

I wonder if I had refused the study the night of, which I was tempted to do, if I wouldn’t have gotten in my car accident last week.