Archive for August, 2009

Strep Throat a Trigger?
August 23, 2009

I confess this worries me.  The many varying opinions on whether narcolepsy is inherited or not (the consensus seems to be yes, but only slightly) don’t provide a clear answer, but I feel that it’s safe to assume that as a carrier of the HLA gene mutation, there is a small chance Noah could have it too.  So he may possibly have the genetic predilection for narcolepsy…

How on earth can a parent protect their child from strep throat?  It’s almost inevitable that he’ll get it, especially since we’re planning on sending him to a public school and we’re already availing use of the church nursery.  I’m fairly certain that the trigger for my own disease was the catastrophic staph infection/coma I experienced in high school.  Life-threatening septic shock?  Pretty minor chance that my son will ever see that.

Strep throat?  Well, the odds are not in our favor.  Here’s to hoping the HLA gene mutation was not passed on.


Dare we hope?
August 18, 2009

Jackie Millet left her home in Welles, Maine, at 7:30 a.m. She was worried that if her husband dies, she’ll lose his private supplemental health insurance, and will be left with Medicare.

“Medicare helps cover most of what I need done,” she said. “The supplemental helps to pay for my meds, and those are very expensive. I have narcolepsy, where I tend to fall asleep, so I need it to stay awake and without it I can’t function. I couldn’t be able to drive.”

Millet got to ask her question. “I take a lot of medications. I’ve had a lot of procedures,” Millet told the president. “How will Medicare, under the new proposal, help people who are going to need things like this?”

“In terms of savings for you, as a Medicare recipient, the biggest one is on prescription drugs,” President Obama replied, “because the prescription drug companies have already said that they would be willing to put up $80 billion in rebates for prescription drugs as part of a health care reform package.”

Millet would still have to pay out of pocket for her drugs, but, the president argued, it would be less than she’s paying now.

–“A Civil Discourse at Obama Health Care Forum,” Fred Thys,

Since the debate over health care is still in the thorny wilds of none-one-is-sure-exactly-what-is-going-on, I thought this might be the perfect opportunity to examine what support narcoleptic (and other sleep-disturbed) Americans need and would get if this were a perfect world.  (I am anticipating that any reform would not result in any significant changes for most of us.)

And I make a point to say sleep-disturbed Americans because we have different needs than other citizens of the world.  For example, your average Berliner doesn’t worry about falling asleep while driving since he takes public transit (although you still wouldn’t want a sleep attack there, either.)  And your average Sherpa probably wouldn’t worry about falling asleep at a desk job.

What we have right now: Access to drugs–unavailable in generic form and so very expensive–and the “right” to adjust our work schedules to our sleep needs.  So if you’ve been properly diagnosed and can provide some sort of proof, you should be under the umbrella of the Americans with Disabilities Act, where the employer is legally required to accommodate your disorder, perhaps by granting extra breaks or longer lunches (that could include a nap.)

There are two big problems with the ADA protection.  1) Narcolepsy is extremely under-diagnosed.  Because of its comical portrayal in the media and the overall cataplexy/narcolepsy confusion, many people associate the disease with dramatic faints or falling asleep in your soup, and therefore are unfamiliar with the more common symptoms, such as EDS.  Not only are doctors failing to recognize it, but the narcoleptics themselves are unaware that they’re suffering from a subtler version of the funny disease they see on TV.  The undiagnosed narcoleptic may be in constant degrees of reprimand at their job, always in trouble for sleep-related behavior, and have no idea that they have an autoimmune disorder.  Simply put, the ADA protection for sleep disturbed people fails because so many of us don’t know we have a truly medical disease.  And without knowing that, how can we demand our rights?

2) Narcolepsy and other sleep disorders aren’t taken very seriously.  I still struggle with this issue in my life.  It is difficult to make someone understand how profound the effects of disturbed sleep are–and why you need to take a nap in the staff kitchen.  To someone with normal sleep patterns, the frequent need for naps and ambulation might seem at turns lazy and petulant.  But as any parent of a newborn knows, just a few days of disturbed sleep will impair your focus, mood and effectiveness.  (Imagine an entire lifetime of this!)  Employers are technically required to help you if you ask, but we all know that there are several ways employers can get around this.  The most common would be an overall unhelpful attitude on the part of the boss, contributing to a negative atmosphere where the narcoleptic feels guilty about their needs ( and perhaps putting a temporary strain on their colleagues while they take a nap break. )

I’ve never heard of this happening, but it certainly wouldn’t be difficult to imagine a scenario where a boss needs to lay off one worker.  The narcoleptic employee would make the most sense–but of course legally that could not stand.  So he invents a reason.  Maybe–this hits close to home for me–the employee gets fired for chronic lateness, caused by the narcolepsy.  Because they’re being fired for lateness and not narcolepsy, this is legal, even though the employee has about as much control over their waking as they do their sleep attacks.

What I’d love to see:

An initiative to properly and more thoroughly diagnose those with disorders.   This would necessitate that more doctors become familiar with the different disorders and that the required tests (such as a MSLT) could be provided without being a financial burden to the patient.

Drugs used to treat narcolepsy available in generic form.  This includes, but is not limited to: Provigil, Ritalin, Dexdrine and assorted antidepressants.

Workplace concessions to the physical needs of a tired employee.  Perhaps every workplace should have a semi-quiet, semi-dark nook or room with a couch, so that people can nap comfortably.  Perhaps businesses could adjust some of their operation norms: an insomniac could work from home at night, then sleep during the day.  (This obviously wouldn’t work for many jobs, but I feel confident that it would for many professional ones.)

These three things would help assure that sleep-disturbed individuals get the identification and support they need.  Will they ever happen?  Not for a long time.  But it never hurts to dream.

Welcome to Spare the Nod, a blog about parenting with a sleep disorder
August 11, 2009

One night when my son was a week old, he woke crying for the fourth time in two hours.  I hobbled out of bed, hunched over my c-section incision, picked him up out of his bassinet and took him to his nursery where I tried to change his diaper.  His screams echoed in the silent house—I could hear my husband tossing in his sleep at the noise.  After a week of recovering from surgery—with five days of prodromal labor before that—and a nightmare of attempted breast-feeding, I was exhausted.  I looked out the window at the inky black night and had the fleeting wish that Noah had never been born.

And then immediately was swarmed by guilt.  How could I think that?  After two heartbreaking miscarriages and a difficult pregnancy complete with bed-rest and hospital stays, how could I not be elated that this precious boy was here and safe?

I cuddled Noah close to my chest and sat down in the glider, where we both cried until we fell asleep.  The next day, I was determined to find some answers.  Because I was not just suffering from the baby blues, and I did not have any other symptoms of post-partum depression.  No—I had narcolepsy and was suffering from extreme sleep deprivation.  I’d gone from sleeping sixteen hours in a day to maybe three or four.  And because I was determined to breast-feed, medicines were not an option.  I would have to find ways to cope non-pharmaceutically.

I browsed the internet.  Endlessly.  Searching for anyone on any forum who’d had experience parenting with narcolepsy—or any sleep disorder.  The results were disappointing.  Narcoleptics don’t have a huge showing on the internet; we’re not a large group, and any time we have free to surf, we’re probably using to nap instead.  All I could find were a few thin resources on parenting children with sleeping problems and a handful of desperate forum posts from exhausted mothers.  Luckily for me, sleeping and breast-feeding got a lot easier and continue to get easier by the day, but there will be new hurdles.  Especially if a second tot comes along!

So here’s my solution: I’m going to blog about my own experiences as a narcoleptic mother.  I’m hoping anyone who has answers, experiences, opinions, information on this somewhat esoteric lifestyle will comment with their advice.  And I want anyone with any type of sleeping disorder—not just narcolepsy—to chime in.  So all you with insomnia, hypersomnia, shift-related disorders, sleep apnea, sleep-walking or even restless legs syndrome or night bruxism—please feel free to share, even if you’re not yet a parent.

In the meantime, I’m going to explore different topics and strategies as they come up.  Hopefully, even if it’s just by reminding us that we’re not alone, we can cobble together solutions to make the impossible a little easier.