Saturday, 16 April 2016

Sleep study FAIL

As if I hadn't been poked and prodded enough the week earlier, last week I attended one of those overnight sleep studies.

It was never something I ever imagined I would need to do.  I've had sleeping issues off and on, but nothing that dramatic or long lived.  One of my 57 goals for this year is "Sleep more", and I've been doing what I can to work on that.  I've got a list of mini goals that comprises of
the usual things we all know, plus bits and pieces from research I've been doing.  (If you have trouble sleeping, I really liked this article).

Anyway, despite me actively working on this, I've been having issues.  I've been falling asleep between 2pm and 5pm.  It's only when I lie down (TV taping catch ups or on my laptop on the weekends) ie. if I'm active or even just sitting up, there's no issues at all. And then after 5pm, I can lie down to my hearts content, and not even be sleepy at 2am.

I've also been finding it incredibly difficult to get out of bed in the mornings.  I'm not a morning person whatsoever; I get completely motivated late at night - but even still, this waking up problem has been in overdrive; it's been quite out of character for me.  It doesn't matter if I've had 4 hours sleep or 10 hours, I can't seem to get up.  This hasn't helped my boot camp or parkrun attendance records - more on that in another post.  

But most of all, both things are just very frustrating, and strange.  Never before have I been the type to fall asleep just by lying down.  My Dad kindly suggested that I'm getting old.  Thanks Dad!  Yeah, I am, but I'm not that old!  And besides, the 2pm-5pm thing is suddenly new, and like clockwork.

I researched (aka Dr Googled) these symptoms and I matched myself up with Adrenal Fatigue.  It was a textbook diagnosis! ;)  The time of day and everything.  I mentioned it to my GP - but apparently Adrenal Fatigue isn't something that's believed in by the medical community - it's more something that a Naturopath or Homeopath would diagnose.

I didn't care about the symptoms having a label, I just thought it would give us a reason.  I just want to fix them.  She agreed I had some type of Fatigue, and gave me a referral for an overnight sleep study.

For some reason I didn't question the need for this, or ask about alternatives, I just went
along with it.  I think I had too many other health happenings that had priority focus to think too much about this.

I got an appointment, and then the day was here.  They didn't give many instructions at all.  I had to show up at 7:15pm, they would 'release' me at 5am, I could bring any alcohol I usually drink before bed (I don't drink lol), and I must be clothed in bed.  That last instruction was a-ok!  Lol, far out.

I Googled so much, trying to find out more info, but there wasn't much out there, including on the sleep study's website.  I just wanted to know what would happen and how it all worked, but I could hardly find anything.

All I knew about sleep studies were that they looked something like this:

TV shows and movies aren't far off, because this is what I looked like:

Just with bigger boobs

But in reality I didn't know what to expect, and was not looking forward to it. 

I hate with a passion staying the night outside of my own bed.  I avoid it at all costs and have done since I was a kid.  I don't let it control my life, ie I still go away etc., but as much as possible, I don't.  One thing I hate is having to bring everything along with me: clothes, toiletries, I hate hate it.  

Since I had to be up at 5am, I thought it'd be a perfect opportunity to go straight to boot camp.  So I turned up to sleep school dressed in my boot camp clothes, and brought nothing else.  I told myself I was just going to a doctor on my way to boot camp, but would
happen to lie down and sleep in between!  Not having to use the sleep study as a hotel (with packed clothes and toiletries) helped my mindset.

How did it go?  Well, you can read the short version, or the less short version of how my night unfolded.

Short version:

It.was.horrendous.  Use my experience as advice.  Never, ever do a sleep study.

Less short version:
I showed up, and a guy at the front desk asked for my questionnaire that I was meant to have pre-filled in.  I handed it over, and he said to come and sit with him behind the desk for a "nose test".  He hadn't said his name, who he was, what the nose test did, or anything.  I sat beside him and I had to put a mask (like an oxygen mask or CPAP mask shape, but with a rubber seal along the edges, and a stick inside with a bit of soft material of some sort on the end.  He said to stick the material stick up one nostril, and then press the mask over my nose and mouth, pushing hard to seal it, and then breathe in through the open nostril only.
The white box

Breathing through one nostril while covering the other and your mouth: this little exercise was not good for claustrophobia. :(  I started panicking and almost took it off, but I pushed through.  I had to then do the same with the other nostril.

He then showed me to my room, and asked what time I usually went to sleep.  I said 12am-1am, and he was horrified.  I said I'd try and go to sleep earlier of course, but I had to wonder, what they expect...?  It was 7:30pm....

He said the latest he could come in to 'hook me up' was 10:30pm, and he then said I was free to relax or watch TV or anything I wanted until then.  I would have preferred to be down the road, at home, for these 3 hours, but anyway!
It's just a work's just a work hotel

The room was pretty big, and it looked just like a hotel room, with a big TV and air con.  There were no walled windows with scientists in lab coats looking in, so I assumed there must have been cameras instead.  I wouldn't know, because the guy didn't tell me anything.  (I asked later and he said there were no cameras, they measured everything through the electrodes he would attach later).

I lay there, angry and hating the world, and told myself to just pretend I was in a hotel for work overnight.  I texted a friend who I know uses a CPAP machine, and who I'd expected had done sleep studies before.  She replied and said that she'd done hers at home.

HOW DID I NOT KNOW THIS WAS AN OPTION?!  I can't describe how angry I was all day
leading up, and while I was there - my control freak independence was feeling stifled - and then while I'm there, I find out you can do this at home??  Augh!
At 10:30pm, NNSA (No Name Sleep Analyst) came in and said he had to hook me up.  The only words he spoke were answering me when I asked if there were video cameras, and saying "4" when I asked how many sleep patients were there tonight.  


He put belts around the top and bottom of my chest, and then stuck an electrode to each leg.  He plugged the other ends into a white box thing, then handed me the white box and told me to follow him.  I had no idea where we were going.

We went to a First Aid looking room, and NNSA asked me to take my hair out.  I know it sounds petty and stupid, but I was so upset about this.  I'd braided my hair because I was sleeping, then going straight to boot camp, and then straight to work - I didn't bring a brush - braiding takes time - I don't like being told what to do with my hair haha - just no, dammit!  If he'd explained why he wanted me to take it out, I would have understood.  In the moment it kind of felt like this was my only controlled thing, and now it was being compromised.  Fine, I'll come to a sleep study, I'll sleep in a strange bed, you can measure my breathing or whatever, but you can't make me take out my hair!!!!

I thought maybe it was because tiny bits of hair were in my face, so I asked him if he wanted me to pull my hair back with my hands.  He said "no, just take your hair out".  Begrudgingly, I took it out, still not knowing why it was needed.  On the inside I felt like my 3 year old niece looks when I make her let me put her hair up!  Us girls are very protective of our hair!

One of the two belts

He then said he was going to scrub my skin to get rid of dead skin cells, so that the electrodes would stick better.

Man, I wish my blog allowed me to use emoticons...

He used the word "scrub" correctly.  He scrubbed the shit out of my dead skin cells alright!  He scrubbed so hard that my skin felt red raw.  He started on my forehead, and then scrubbed at certain points all over my face, and then all through my scalp (that's why he needed my hair taken out - I wouldn't have minded if he'd told me!)

It was hurting so much - if I wasn't so built up angry about the whole night, and perhaps a little more emotional, I could have cried.  He pressed so hard.  About 20 spots all over my face and scalp.

Stupid blue plastic thing
He then got hot wax / glue, and individually attached the end of about 20 electrodes and stuck them to my head, in the places he'd scrubbed.  The other ends went into the white box.

He then got soft plaster looking "stickers", and pressed them over the hot wax glued electrodes on my raw skin, to help secure them.  He was putting the stickers all through my hair.  I asked if they'd pull my hair out in the morning, and he said no, that my hot shower would take them out easily.

I said I was going straight to work (via BC)...he was a bit astounded and said that I needed to have a shower!  He said they had a shower there that I could use, and I said I didn't bring a towel or any toiletries, because I wasn't told I would need said shower.... Grrr the instructions for this place really need to be revised!

After about an hour of scrubbing and hot wax Tuesday night fun, NNSA walked me and the white box back to my room, put some kind of monitor on my finger, some tubes up my nose, and another tube with a stupid blue plastic thing that hung over my mouth.  He told me to lay still, placed a walkie talkie next to my shoulder/face, and told me to follow his instructions.  He left the room and through the walkie talkie, told me to do things on command, like look side to side, cough, move my legs, clench my jaw, things like that.

He came back to get the walkie talkie, and said to go to sleep!  I asked if I could move around with all of the cords, because I'm a really restless sleeper, and he said yes, but to try and spend at least 1 hour in each position.  Eg. an hour on my back, an hour on each side, so that he could get good readings.

I said ummm I'll be asleep....I won't know what I'm doing.  He said he'd come in and tell me.  I didn't argue that I would have already have moved by the time he told me not to....

He left my room around 11:30pm.  I was hating every minute.  That stupid blue plastic thing was leaning on my mouth, the cords were bumpy on the back of my head, and I wanted my own bed.

I tried to go to sleep about 1am, and... couldn't. 

I told myself the sooner I get to sleep, the sooner I'll be able to get out of that place.  I tried everything I could do (within the limitations of being attached to 20+ electrodes) but I was just wide awake.

Every time I opened my eyes, I could see a light flashing.  And that stupid blue plastic thing resting on my lips was grating my nerves.  If NNSA had any microphones hooked up, he would have heard me swearing.

I considered quitting, and going home.  I dearly wanted to, but I kept telling myself that I may as well try to get some benefit from it, and not put all the head scrubbing and hot wax gluing to waste.

But try as I might, I couldn't sleep.  There was an intercom next to my bed, and I buzzed NNSA at 2:50am, and he came into my room.  I said that I couldn't sleep, and asked him what the minimum time was that they needed people to sleep for, to be able to get data.  He said 5 hours.  Seeing as he was supposed to be waking me up in a little over 2 hours, I asked him if there was any point me being there still.  He said that they could still get some data from 2 hours, even though the minimum was 5....


So I continued to try.  I gave myself a time limit; if I hadn't slept by 3:45am, I was walking out.  I'd given up on boot camp by then, but I still had to work.  I can cope with 3 hours sleep, but cannot do 1 hour.

I closed my eyes again, try try try...nope.  I continued to open my eyes, getting more annoyed by the flashing light, so uncomfortable with the electrodes digging into the back of my head, counting the hours left.  I wondered if NNSA could read my thoughts.  The electrodes on my legs had been accidentally pulled off for ages.  I kept telling myself to try and just get 1 hour; make this horrendous experience somewhat worthwhile...

I yanked the stupid blue plastic thing to rest on my nose instead of my lips, thinking they could have designed these tubes better!  What a waste of plastic.  At one stage through the night, I picked up my phone and Googled "sleep study can't sleep" and found many identical stories to mine.  In one of them it explained the importance of that stupid blue plastic thing, in that it was to measure breathing from the mouth....  Whoops!  I pulled it back down.

3:45am rolled around and I buzzed NNSA again, and I quit / he kicked me out at 4am, after he'd unhooked me.  He left all the stickers in my hair, and wax / glue all over my face.  There's no way I could have gone straight to boot camp or work!  I took this delightful selfie as I left the place:
Ready for boot camp and work!

I said goodbye as I walked past the office where NNSA sat, and he barely looked up.  I drove home and showered and washed my hair 3 times, and slept 5am-9am, in my own bed that had never felt so comfortable, and went to work late.

I was so tired that night, and went to bed around 7:30pm.  I was so, so mad.  What a waste of two nights.  And I didn't even have any data to make it worthwhile!  NNSA said I'd still get a report, but I doubt there'll be any revelating results on there, considering I didn't sleep at all.  I sleep better in loud hospitals and uncomfortable planes.

I might try and do the test at home, I'll see what my GP says next time I'm there.  But there is no, no way in the world I will ever do one of those tests again.  Obviously, a couple of weeks later, I've calmed down about it, but the horrendousness at the time was real. :)

My Mum thinks it's just that my circadian rhythm is out of whack.  She's probably right; I sleep 4-5 hours, and then one 10 hour sleep on the weekend if I can.  I go to bed so late, because I'm so highly motivated late at night.  It's pretty obvious when I now think of it.... I wish I'd spoken to my Mum before my GP!

At least I got some interesting selfies from my annoying night, so not all was lost. ;)


  1. Blerrgghhh... sleep studies! I did one in Melbourne about 10 years ago, when I was an inpatient for Fibromyalgia / Chronic Fatigue rehab (I refer to it as "when I was in rehab" for a touch of the rocker chick!). Seriously, I think sleep physicians and techs must be the ones who didn't go into pathology because they lacked the social skills! The specialist I saw in Melb was one of the rudest, most dismissive medical professionals I've ever met. He basically told me that, coming from Tasmania, I had no hope of any meaningful recovery, due to the lack of proper medical services! Idiot!
    Yes, I believe you can now do a sleep study at home. You still have to deal with a (mobile) sleep tech invading your personal space, though, as they come and hook you up in the evening. I'm sure it would be easier to get some meaningful results though - I loved your cartoon! How on earth do they expect to see an "average" night's sleep when you're hooked up like a lab rat?
    You'll be pleased to know that the concept of "adrenal fatigue" does now have genuine credence among the mainstream medical community - your GP might be a bit behind the times? My consultant rheumatologist (also in Melbourne) now routinely screens all his CFS and Fibromyalgia patients for it, and says it's surprising how many people have cortisol irregularities, even if it's "sub-diagnostic" (i.e. the fact that you're technically in the "normal" range, but at the lower end of it, still means you're going to suffer symptoms). You have to do a two-stage blood test. The first one is as early as you can in the morning, the second mid-late afternoon, when your cortisol levels should be at their highest. It's basically the best medical evidence of your circadian rhythm, so your Mum was right!
    Bear in mind that consistently waking at 1.00 or 2.00am is a pretty big marker for depression - if you don't already, a low dose SSRI can do wonders to keep your sleep pattern on the straight and narrow. I swear by it, although I wouldn't otherwise see myself as depressed.
    Anyway, try to put the sleep study behind you (unless you feel like putting feedback in writing - any efforts to improve the experience for future patients without your fortitude would be worthwhile). I hope your sleep issues find resolution sooner, rather than later.
    Sarah xxx