Adventures in Narcolepsy, Part 6: The Sleep Doctor

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After months of doctors and no answers, the appointment in which I got diagnosed with Narcolepsy was a bit of a non-event. All the build-up, but the payoff was a foregone conclusion. I had so much time to read about it that I wasn’t surprised by the diagnosis.

I was surprised by my sleep test results. As you may recall, the test involves sleeping 8 hours overnight and then being left in a dark room every 2 hours to see if you nap and how long it takes to fall asleep. A normal person might not fall asleep at all if they got enough sleep the night before. I fell asleep in every nap – it took me an average of 4.5 minutes to fall asleep in each – 8 minutes or less is the general consensus on what is pathological sleepiness and I was half that. [Read more…]

Adventures in Narcolepsy: Part 5, The Dark Place

A letter from the night before diagnosis. I didn’t originally write this for publication, but just to work through my feelings. After re-reading it with a little distance, I decided it offered some insight into what it is like to have chronic conditions and what it is like to be facing a diagnosis of something incurable. It’s important to note that this was simply me at my nadir, I have, for the most part, been a lot more positive both before and since, and being diagnosed came primarily as a relief.  Content note: It’s a real downer.

Sadness from Pixar's Inside OutIt’s difficult to explain how profoundly tired I am and how much this is hurting my life. Sleep deprivation affects everything: my ability to pay attention, my ability to control my emotions, and my ability to mentally perform are all suffering. Between my anxiety about what is, at this point, almost certainly narcolepsy and the actual effects of that narcolepsy, I am really struggling. [Read more…]

Gay Marriage Nationwide: The Joy and the Sadness

gaymericaIt’s hard to believe it was nearly 7 years ago that Prop 8 passed in California.  I remember staring at the television, immobilized with disbelief and horror, my happiness at Obama’s election completely erased by my anger at the California voters for messing this up so badly.

What followed for me was an obsession.  An obsession with law, an obsession with the Prop 8 case, and an obsession with the intricacies of the Supreme Court.  That obsession led to my writing being published somewhere outside my blog for the first time, it led to me spending the night outside the Supreme Court to hear the Prop 8 arguments, and it led me to today — sitting home alone, watching SCOTUSblog live-blogging the legalization of marriage nationwide and sobbing so hard my Fitbit thinks I’m jogging.

I knew gay marriage across the US was coming, but I am still an emotional wreck, experiencing a full rainbow flag of conflicting emotions.

I am, of course, ecstatic and relieved.  It’s as though a huge weight has been lifted, but it’s also like that weight was holding the blood in from a lot of old wounds.  That night in 2008, that day almost exactly 2 years ago when California got marriage but the justices would not deliver it to the rest of the country, the passing of dozens of state constitutional amendments defining marriage as between a man and women, my mother’s best friend who died of AIDS twenty years ago, the struggle of so many of my friends in coming out or being dragged out in a hostile culture, and on, and on.

And I am exhausted because this was a drop in the bucket of injustices in the world and it took so much energy from so many people to manage this change.

There are other battles, other fronts, other wars waging. Marriage was a fight for inclusion in a conservative institution — for LGBT (although, let’s be real, it’s mostly G here) people to become more accepted by mainstream society and have access to institutions of that society.  Radicals are right to worry that we are buying into broken institutions with deep flaws, not just marriage, but the entire idea of a mainstream, conservative respectability.  I disagree with radicals that the way to do this is entirely from outside, we need outsiders AND insiders, but the worry is that if queers get acceptance they will no longer be interested in changing the problematic social institutions in the world — prison, gun violence, homelessness, climate change, the war on drugs, the war on terror, racism, sexism, and a host of other problems that exist in the world.  The worry is that the fight for marriage will have fully drained them of resources, and we’ve seen organizations lose funding while the focus was on marriage.

It’s like the flag at the SC State House, flying today during the funeral of Senator Reverend Clementa Pinckney.  Yes, it must come down. Yes, it’s horrifying that that is even under discussion.  Yes, it is a symbol of racism and hatred.  But removing the flag won’t fix the problem, it’s not enough.  That flag didn’t go to Dylann Roof’s house and point him the way to the Conservative Council of Citizens or Stormfront.  Taking down the flag is necessary but it is also a band-aid over a gaping wound we can’t heal with hiding flags, and we’re focusing on it because it’s the only thing politicians can get done to address the social issues brought up by this act of racial terrorism.

It takes obvious, in-your-face, undeniable injustice to get action, and too often the action is the easy action.  We aren’t dealing with racial inequality or access to guns or the reality that white men are our homegrown terrorists, we’re taking flags down. Gay marriage was the easy thing to fix, which is hard to believe considering how much time and money and energy and heartbreak went into the thing, but that’s true of that flag too.  And gay marriage matters, it matters so much, if for no other reason than it offers same-sex couples a place from which to fight for other issues, but Loving v Virginia didn’t end racism or even create full mainstream acceptance of interracial marriage.

And so today I cry.  I weep with joy and relief for a victory that was hard-fought and well-deserved.  I weep for the people who didn’t make it to today, for the millions who died in the AIDS crisis, and for those who simply were born too soon to see this justice. And I weep because there’s still so much to do, more than can ever be done in my lifetime, more than can ever be done by my exhausted hands. I weep for the future person who will be crying like I am because you and I didn’t make it to see justice done.

But I also celebrate because today is a good day, a day in which massive good was done in this world, and that’s not nothing.


ETA: For similar commentary with a little bit of a different perspective and details, see Greta Christina’s post.

If you like what I’m doing, please consider supporting me at Patreon so that I can keep doing it.

Dylann Roof’s Manifesto

A picture from Dylann Roof's Manifesto; 1488 means "We must secure the existence of our people and a future for white children, Heil Hitler"

A picture from Roof’s website; 1488 means “We must secure the existence of our people and a future for white children, Heil Hitler”

If you’re at all interested in how Dylann Roof decided to murder 9 black churchgoers, the internet has discovered his manifesto.

One of the most interesting things about it, though not at all surprising, is that internet hate sites were key to Roof’s development of racial animosity.  He claims he was raised in a non-racist household and in a mostly non-racist environment.

The event that truly awakened me was the Trayvon Martin case. I kept hearing and seeing his name, and eventually I decided to look him up. I read the Wikipedia article and right away I was unable to understand what the big deal was. It was obvious that Zimmerman was in the right. But more importantly this prompted me to type in the words “black on White crime” into Google, and I have never been the same since that day. The first website I came to was the Council of Conservative Citizens. There were pages upon pages of these brutal black on White murders. I was in disbelief. At this moment I realized that something was very wrong. How could the news be blowing up the Trayvon Martin case while hundreds of these black on White murders got ignored?

The Council of Conservative Citizens was formerly the White Citizens Council.  They are dedicated to the separation and segregation of the races.  The first post on their website today is them mourning the loss of the 9 lives in Charleston.  An early post says this (they obviously haven’t seen the manifesto yet):

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Fox News on Charleston: Not about race or politics, about hating Christians

Dylann Roof of Columbia, SC, wearing a jacket with apartheid era flags from South Africa and Rhodesia

Dylann Roof of Columbia, SC, wearing a jacket with apartheid era flags from South Africa and Rhodesia

I shouldn’t be surprised by what Fox News does ever, but I have to tell you, their response to the shooting in my home state has me furious.  In a segment on Fox and Friends, they discuss the shooting as an Attack on Faith, fail to mention Reverend Clementa Pinckney’s role as a State Senator, and don’t even mention the race of the shooter and victims until the very end of the segment, when they do so only to s0w doubt — instead they choose to speculate on the anti-Christian motivations of the shooter and suggest that pastors need to start arming themselves to kill intruders.  Turn the other cheek while you reload.

“If we aren’t safe in our churches then where are we safe?” asks Elisabeth Hasselbeck

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Adventures in a Definite Narcolepsy Diagnosis: Part 4, I’ve got Narcolepsy

I officially have Narcolepsy with Cataplexy.  I also, as of next Friday, have no job because they’re getting rid of my department and restructuring at work.  It’s been a bit of a week.  I will write up the doctor’s appointment, my test results, and quite a bit more on this subject, but I know there are some people who just want to know the answer.  I also may try to put together a Patreon like Miri has done, now that I am going to be unemployed with these fancy new medical bills, so I guess keep an eye out for that. Yay America.

Narcolepsy with Cataplexy

Congrats to the 23 people who guessed I had Narcolepsy, you win!


Poll Results

Previously: Part 1, How I got Here
Part 2: WTF is Narcolepsy?
Part 3: The Sleep Test
Next: Part 5, The Doctor Visit (Coming soon)

Adventures in a Possible Narcolepsy Diagnosis: Part 3, Sleep Test

Scheduling the test was an insurance nightmare.  As it turns out my ACA insurance (the second most expensive plan offered in the South Carolina Marketplace) doesn’t cover a single sleep specialist in the state.  I’d have to drive to Charlotte, NC, or Augusta, GA, to find a sleep specialist in my plan.  I even called the insurance asking for help and they wanted to send me to pulmonologists that have no special training in sleep disorders — in as much as pulmonologists deal with breathing issues, I thought that this was not the appropriate choice, so I decided to reach out to a lot of people to see what the deal was.  I never heard back.

The sleep test itself, however, was covered, just not a doctor to diagnose me based on the results, as long as I went to the Catholic hospital’s lab and not the sleep specialist lab.  Of course, covered it is still a lot of money, but nearly $4,600 less.  With this and the other expenses of all the appointments I’ve gone to trying to figure out what’s going on and know I will go to, I’m going to be out about $1,800 in medical costs, and that’s before I even try to treat the thing (assuming there is a thing)… hopefully the sleep lab takes installments :/

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IMG_3980Most people who go in to get a sleep test are there to see if they have sleep apnea (hence why the recommendation of a pulmonologist) but I was scheduled for a night before when they’d have someone come in during the day to do a nap test.  To get diagnosed with narcolepsy you do an overnight sleep test to see what it looks like when you sleep at night called the PSG.  The PSG is not enough to diagnose narcolepsy, it’s mostly to eliminate other diagnoses and make sure you sleep enough hours before you do your nap test.  You have to sleep at least 6 hours to be allowed to take the nap test.

I was really worried about the whole thing.  I’d read horror stories of people having allergic reactions to the glue, being woken up repeatedly by their lab technician, not being able to sleep at all because of anxiety, and many other stories.  In my mind, I imagined a room like a surgical room or MRI room — bright white with lights shining down on a twin hospital bed being poked and prodded and attached to hundreds of wires.  I was afraid I’d be locked in without food or ability to leave.

I was way off about what the room was like.  It was essentially the same as any hotel room.  Television, snacks, water, attached private bathroom, big comfy chair, big comfy bed.  And a creepy camera to watch me all night.  The night stand was covered with what I assume are CPAP machines of some kind.

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My sleep tech was awesome.  She answered all my questions and we laughed about Rachel Maddow.  It was great.  It took a really long time to get all the wires and things on me, so it was great to have someone fun to talk to beforehand.  I arrived at 8 and I was put into bed just before 10.  There was another woman there being tested for narcolepsy.  Interestingly, she was also a ginger, which I find interesting because the only person I know with narcolepsy is my partner’s mother, who is also a ginger.  Once I had all the wires on me I was extremely worried about falling asleep, especially because I never go to bed at 10pm, that’s so early for me.

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I did have a little trouble falling asleep — it took probably ten minutes instead of my normal 5.

I woke up a lot all night.  Even though I sleep with earplugs, every noise jolted me straight up in panic.  I didn’t, however, have any sleep behavior, I think because I had to stop taking any stimulants.  The tech woke me up messing with the climate control because I was too warm and that apparently messes up the test.

Then at 6AM, which is about 3 hours earlier than I go to bed, her voice woke me up over the intercom.  And she came in and unhooked me and, while she couldn’t tell me anything about my results, did say that I had slept all night and fallen right back asleep when woken, and I had been “in REM a lot.”  That points to Narcolepsy, but it’s hardly conclusive.  I got unhooked from many of the wires so I was much more comfortable.


My night tech was replaced at 7am with a day tech who was perfectly nice but not as awesome as the night tech.  She was in charge of the MSLT, “Multiple Sleep Latency Test,” which everyone just called the nap test the whole time.  For the MSLT, you take 4-5 naps and they see how long it takes for you to fall asleep AND whether you go into REM when you nap (this is called Sleep-Onset Rapid Eye Movement or SOREM).  At 7:40am, I got put down for my first nap.  I did that thing where I was pretty sure I had napped because time was wrong and I had some vivid images happening in my head and I was super groggy when the tech came in to wake me up and I was definitely *woken* up.  She asked if I had slept, I said I thought I had, and she asked if I had dreamed, I said I thought I had.  Both of those things are also associated with narcolepsy :/

We repeated this little dance at 9:40, 11:40, and 1:40.  I got increasingly emotionally unstable at being forced to get up out of my naps, I almost cried I was so frustrated at her after the 1:40 one, which felt both ridiculous and completely justified.  I got the sense that she’d dealt with some actual tantrums, because she was so apologetic.

At the last sleep test, I was struggling to stay awake even before it started, but the computer started acting up.  I ended up being in a dark room in a comfortable bed fighting to stay awake for 20 minutes while she tried to fix the computer.  Ultimately, she came in and explained that even though this lab always does 5 tests, only 4 are needed for diagnosis if the results are clear, so I didn’t need to do the last test — so either I definitely do or definitely don’t have Narcolepsy.  As she started to unhook me, I tried to get more information from her, and asked, “Could you see me dreaming?” because I knew I had slept and I had felt my eyes going wild, but I wasn’t sure I had dreamed.  She said, “I can’t tell you that, but I can tell you that’s why we don’t need a fifth test.”  That sounds a lot like, “Yeah, you’ve got Narcolepsy,” but it could be, “No, you didn’t dream at all, lady.”

So, it looks like I have every symptom of Narcolepsy, every comorbid disorder or behavior, AND like the tests have confirmed it EXCEPT I don’t know for sure about the cataplexy or the test results.

Do I sound like someone in denial?  Or like someone trying to talk myself into the diagnosis? I’m not sure. Maybe I should run a poll.

After not hearing anything for 2 weeks, I called the sleep doctor office because no one at the lab answers the phone and I didn’t know who else to call.  The receptionist told me she had my results literally sitting in front of her and I needed to schedule an appointment with someone to get them.  This means that I have to go see someone out-of-pocket.  Great.  I feel like I’m being extorted for money just so I can read a test result which I’ve already paid for.  *sigh*  But I agree because what the hell else am I supposed to do and they’ve been very nice and everything.  June 3rd.  11am.

A week later, a nurse from my primary care physician’s office called me.  My PCP had seen my test results and I really needed to get in to see a sleep doctor, they could treat my sleepiness, and had anyone called me?  I confirmed that I had an appointment and asked if the nurse could tell me what was on the results.  She said she couldn’t, because my doctor hadn’t written down a diagnosis so she just didn’t know what the test meant.  SIGH  Again, it sounds a lot like there’s a diagnosis of Narcolepsy sitting on that sheet of paper, since my PCP is making me go to a specialist for treatment, but maybe she just thinks that whatever is going on is outside her area of expertise and it could be anything.  So tantalizingly close to knowing, so far away.

Wednesday Wednesday Wednesday.

Previously: Part 1, How I got Here
Part 2, WTF is Narcolepsy?
Next: Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

I am not a hypochondriac.  Really, it’s just that there’s frequently something wrong with me, so it seems like I’m a hypochondriac.  I like to think of myself as “on top of things.”  In this case, I very much have not been on top of things.

I confess that before Narcolepsy was brought up I had only the vaguest of ideas about what it was.  Like most people I thought it was a thing that made you fall asleep randomly in the middle of what you were doing, like in the terrible movie “Deuce Bigalow.”  As it turns out, while randomly falling asleep would indicate that you likely had Narcolepsy, that isn’t really typical for people with Narcolepsy (PWNs).

Excessive Daytime Sleepiness is the most common symptom and that’s just what it sounds like.  They say that if you wanted to experience what the day-to-day reality of a PWN is, you’d have to stay awake 48-72 hours.

I’m tired almost all the time.  I usually have about 2 hours a day where I feel properly awake.  My ESS is 16.  16 is the average score for Narcolepsy.  It’s remarkable that my score is so high considering my sleep hygiene. Dark room, earplugs, same bedtime every night, 8.5-9 hours of sleep, no caffeine, no alcohol, no nicotine, no tv in the bedroom, no books in bed. This sleep hygiene routine has maybe knocked a point or two off the ESS since my college days, when I was more prone to falling asleep driving or talking to people because of my sleep schedule.  There are other things that can cause sleepiness, Sleep Apnea and Restless Leg Syndrome being the most common, but I don’t snore, I have a well-defined palate, I don’t kick, and I’ve never had anything like restless leg feelings.

Narcolepsy SymptomsCataplexy is the second most common symptom.  Cataplexy is where you lose control over your muscles when you experience strong emotion.  Most commonly and most severely this would mean you would totally collapse when you laughed, but it can be triggered by anger or arousal or excitement and you can just lose control over one muscle group, often your head or jaw or knees.

… This symptom is the one that worries me because, as far as we know, cataplexy is a slam dunk for a diagnosis, if you have cataplexy you have narcolepsy.  I fall down a lot, several times a week, but not usually preceded by strong emotions.  I’ve always assumed it was because of low blood pressure or vasovagal response, both of which I have, but I also have falls that aren’t like the others and I lose control over my jaw sometimes when I feel very angry, anxious, or laugh.  I slur my speech, it’s a bit of a fight to talk, particularly when anxious or angry.  I can’t stand up if I cry.  And then there’s this other thing.

There’s this thing that happens when I go on roller coasters that everyone I’ve ever gone on roller coasters with gets really bothered when I try to explain it to them.  I always sort of simplify and say they make me feel like I’m going to sleep.  I don’t know if cataplexy is supposed to make you feel bad, but on roller coasters I get really excited and then it’s like my body falls asleep, like I can’t even see or hold the rail or my head up, and I’d feel like I was asleep but awake.  As a person with anxiety, it’s weirdly releasing, and it never lasted til the end of the ride, so I have no problem getting off the rollercoaster.  That same thing happens frequently if I am experiencing a great deal of pleasure in the bedroom. I won’t be able to support my weight and if I try I will do that same thing, my whole body will go limp and I won’t be able to see for a few seconds.  Recovery is instant, quick, and complete. My understanding is that what I’m describing there sounds exactly like cataplexy.

Hypnogogic Hallucinations and Sleep Paralysis are the last two symptoms.  The first describes going into REM immediately when you fall asleep so you have dreams while you think you are awake.  The second describes waking up and being unable to move your body because your body thinks you are still asleep.

For me, these symptoms happen concurrently.  Yesterday, I fell asleep in the middle of the afternoon, something I try to avoid, and spent an hour trying to wake up out of sleep paralysis and hallucinations.  I kept thinking someone was in the house but I couldn’t move, I would wake up and be unable to move and then be half-asleep again — I’d manage to move a little and then fall asleep again and again.  I finally moved enough to be able to slap myself hard in the face several times.

There are other things that aren’t symptoms but are associated with Narcolepsy:

  • Obesity related to constant hunger from sleep deprivation: Check (Though I usually manage to squeeze into the overweight class)
  • Hypocretin

    Hypocretin-producing neurons (img from Harvard)

    Other auto-immune conditions: Check (Severe Allergies, Thyroid; Narcolepsy is believed to be an auto-immune condition caused by your immune system killing all the cells in your brain that produce hypocretin)

  • Severe virus before onset or worsening of symptoms: Check (I’ve had these symptoms for a long time, but they’ve got worse since my Pneumonia, Flu, Mono trio last year)
  • Automatic behavior: Check (I do this a lot when driving long distance)
  • Brain fog/memory problems: Check
  • Difficulty paying attention: Check
  • Depression: Check
  • Low Vitamin D: goddamnit Check

On top of that, there are genetic markers that signal your likelihood of having Narcolepsy, and thanks to 23andme, I know that I have a much increased risk because of my genes.  In fact, of everything I have increased odds for getting, my chance of getting Narcolepsy is the most increased above average.  Followed closely by Parkinson’s, which is, OH GOOD, associated with Narcolepsy too.

stats2So all this points to a not impossible chance that I have Narcolepsy.  Really, the amount I’m trying to talk myself out of the possibility of Narcolepsy is probably quite laughable and hardly very skeptic of me.  The things is, as much as I’d like to fix my symptoms, if they’re something else that will just go away, it’d be better.  People with Narcolepsy have a quality of life approximately the same as those with Parkinson’s or Epilepsy.  It’s not exactly a pretty picture.  There’s no cure and no guarantee that any of the treatments will work for you.

And the treatments are kind of intense — basically they give you uppers and downers and hope it makes you alert and have better sleep than you would otherwise.  One of the most effective drugs?  Sodium Salts AKA GHB, the date rape drug.  Also almost all treatments both interfere with birth control AND you can’t take while pregnant.  Though maybe at some point there’s so much wrong with me that I really shouldn’t inflict that on a new human being anyway.



Anyway, waiting for the diagnosis I am flipping back and forth between wanting them to say I have it so I can get a treatment and really, really not wanting to have Narcolepsy.  I guess having something that’s treatable is better than just being tired all the time with no recourse, but I’m not happy about it.

Read: Part 1, How I got Here
Next: Part 3, The Sleep Test
Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here

I had just gotten into bed and was trying to fall asleep when suddenly there was a man standing next to my bed, having crept into the room without me hearing him.  Terrified, I grabbed my pillow and started hitting him and kicking him as I tried to scramble backwards off the bed in the other direction.

I was grabbed from behind by my partner and I woke up swinging my pillow and kicking wildly, crazed with fear.  It was very confusing to wake up because I had been so sure I was awake in my room, in that very spot, but it was a hallucination or a dream.  My partner was freaked out, he hadn’t even fallen asleep yet, we’d just gotten in bed a few minutes earlier, and I tried to explain what was happening but, as dreams do, it was already fading.  My racing heart and hysterics took a little longer to fade, but I fell back asleep not too much later and forgot it had happened until my partner mentioned it the following evening.

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Terry Pratchett aten’t dead

Death is good at his jobI’ve nothing profound to say about the death of my favorite author and one of my favorite human beings now that I’ve stopped crying enough to type, but I’ll try. Terry Pratchett had an immense influence on my own writing style, including some bad habits, and on my humanistic philosophy, including some opinions on exclamation points. His death feels like losing a friend, a mentor, and a family member.

Selfishly, I mourn the future stories of dozens of characters that I loved and now feel a little bit lost to me too: Esme Weatherwax, Sam Vimes, Tiffany Aching, the Patrician, and Archchancellor Ridcully are just a few that I feel I’ve lost.

I’ve had two Pratchett quotes up on Facebook for the decade I’ve been on it, so I’m glad that I celebrated him while he was alive and might somehow have been able to appreciate it. But perhaps I’ll share one more now. *Leans in conspiratorially.*

“Do you not know that a man is not dead while his name is still spoken?”