Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.
So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.
Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.
Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.
My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.
The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?
Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.
So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!
But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. 🙂
I admire your tenacity having 3 of these done – 1 was enough for me! Great news that your oral appliance is at least helping your sats, though you know I totally empathise with the crap sleeping situation.
I always said that when my sleep started to improve I knew I’d get better physically. It actually happened the other way round though – I started to feel slightly better ME-wise, but it took another 4 years or so for my sleep to improve!
Here are some tips which have helped me:
Temperature regulation: Ceiling fan for the sweats. Electric blanket for the chills (sometimes both at the same time!). My blanket can be switched on for feet and body independently, cos my legs and feet are often boiling while my torso is freezing (I know you have the opposite problem).
Blood pooling: have you considered wearing mild compression socks in bed, espcially if your feet are cold? Or if it’s the opposite problem of no blood in the feet, what about raising the head of the bed slightly (mine’s on 6″ bricks to help with my reflux – takes a few weeks to get used to but now I don’t even notice I sleep on an angle!).
Photosensitivity: I wear an eye mask. Even though when I first put it on I get a firework display inside my head, it’s still better than sleeping without it and my eyes reacting to even tiny changes in light in the room.
Pain: Couldn’t sleep without my maternity pillow. Huge V shaped body length monstrosity, which I shape around me to support my muscles, stop everything sagging and my ligaments being stretched. Got mine on Amazon.
Like you’re finding, I discovered that I had to treat about 20 different issues in order to get anywhere near a decent night’s sleep. It’s still not brilliant, or anywhere near ‘normal’, but it’s 200% better than it used to be.
LikeLiked by 2 people
SORRY, THE 1ST PART HAD ME LAUGHING! U MAY REMEMBER THAT MY BEST TIME OF DAY IS AFTER 11PM. SO THE EARLY MORNING HOURS ARE WHEN I TAKE TO ENJOY A GOOD BOOK UNTIL I’M READY TO FALL ASLEEP–MOST NIGHTS AT 3 A.M. SO WHEN THEY TOLD ME I HAD TO PUT LIGHTS OUT AT 9 P.M. I LAUGHINGLY TOLD THEM, ”THAT’LL NEVER HAPPEN!” SO THEY LET ME STAY UP READING. THEN WHEN I FELL ASLEEP, THEY CAME RUNNING IN TO TELL ME THERE WAS A PROBLEM! THEN BACK TO SLEEP & WAKE UP AT 6 A.M. TO GO HOME. NOW, U TELL ME, HOW COULD THEY GET A PROPER READING? BUT THEY MAINTAINED THEY DID & THE RESULTS CAME BACK THAT I DON’T HAVE SLEEP APNEA–BUT I CERTAINLY DO SNORE. ANOTHER PROBLEM WAS THAT I FIND IT ALMOST IMPOSSIBLE TO SLEEP ON MY BACK FOR ANY AMOUNT OF TIME & LIKE TO SLEEP CURLED UP ON MY SIDE, SO I DID NOT WANT TO WEAR A MASK TO BED! I WAS REALLY GIGGLING AS U DESCRIBED ALL THE THINGS U HAD TO BRING WITH YOU! HOWEVER WOULD WE MANAGE IN SOME BACKWARD CULTURE, I’M SURE I DON’T KNOW!! ANYWAY, I’M CLAIMING 2015 TO BE LESS FRAUGHT WITH HEALTH PROBLEMS FOR YOU–JUST WAY TO MANY FOR ONE PERSON, MY DEAR!! GOD BLESS.
I’m trying to imagine me doing this. First, I’d need my BlueAir filter. I take it to hotels..maybe the portable air filter would do- that’s what I use in hospital. Then, well, I don’t sleep in a bed anymore- because of pins and needles, and joint pain, and hypnic jerks. So I’d need my lay-z-boy (a hospital bed would probably work). Definitely need my heating blanket, and a snack, and my iPad, and my lip balm, and my candies (would they let me chew on a candy as I fell asleep? (I can’t believe I’m admitting this, but it helps SO much with my dry mouth that I suck on them Several times a day- including just before I go to bed.). I think that anybody with a chronic illness- especially one that causes pain, works so hard to sleep that they have to have things just ‘so’ to sleep. Sometimes I remember back to when I could sleep on the ground with only a sleeping bag… I think that if I have apnea (a distinct possibility), it is mostly alleviated when I sleep in slightly upright. Like you said- anything to get several hours in a row. Eight? Well, that is a rare treat.
I’m trying to wrap my brain around your being in fight or flight all night. I do hope that had more to do with the environment than with your typical cycle- that would put your cortisol levels thru the roof!! Sounds exhausting!
Jak- where did u find a heating blanket with different zones!?! Probably nowhere where I can buy one! I’m like Liz- freezing hands and feet, but my head can be sweating, and my core a perfect temp. Messed up thermostat.
Sleep well!! Great news!
Just got mine on Amazon UK Karen – not sure if they’d have them at Amazon.com. Here’s the link http://www.amazon.co.uk/HOMEFRONT-PREMIUM-WASHABLE-MATTRESS-INDIVIDUAL/dp/B001IRFMF2/ref=sr_1_4?ie=UTF8&qid=1427872338&sr=8-4&keywords=electric+blanket
LikeLiked by 1 person
very interesting. i have to sleep with ear plugs (the BF is a loud snorer) and have become somewhat of a connoisseur of ear plugs. i can’t sleep without them anymore, even if the BF is away, because every noise sets off my adrenaline.
is also have to move constantly throughout the night. between the back pain and poor circulation, i can’t sleep in any position for too long, but when i roll over, my heart rate spikes. i also often wake up with tachycardia, which i assume meant i had a dream that made me anxious, but i usually don’t remember it.
i’m glad you got some answers from the test. if you end up trying the Belsomra, i’d love to hear what you think!
YEARS AGO, I WOULD WAKE UP LIKE THAT. 1 MG OF ATIVAN BEFORE RETIRING PUT AN END TO THAT. I ALSO READ FOR 2-3 HRS.
LikeLiked by 1 person
I’ve been wanting to try belsomra! I didn’t know it was available here finally.
[…] it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few […]