Sweet Dreams Are Made Of This.

One night last week I had the worst sleep in recent memory. I was in bed at 930pm and turned the light off about an hour later. I was trying to wear my CPAP, but it has this habit of revving its pressure up incessantly which pumps air into my belly and lifts the mask off my face. Even if I can drift off with the belly bloat, the mask lifting and the increased pressure always wake me. It finally dawned on me that the machine thinks I’ve stopped breathing, so it is increasing its pressure to open my airways. This occurred to me after doing a breathing meditation where the woman said, after this certain period of time, most people have taken 12 to 14 breaths. I had taken 6. So, now, thinking my respiration is uncommonly slow, I try to speed it up and that seems to stop the CPAP revving… But I feel like I’m hyperventilating and it’s anything but relaxing.

This is what was going through my head that night. I did fall asleep for about 15 minutes, but then awoke with my sinuses swollen shut. Not the safest thing when you have tape over your mouth. So, I took the mask off and tried to sleep. And tried to sleep. And tried to sleep. The air in my guts was painful. My neck was hurting. It was too cold in my room. Something was clicking out in the hallway. I turned my heater on, I put Tiger Balm on my neck, I went to the loo, I sat in the hallway for what felt like an hour waiting to hear the click and find the culprit, but it never happened. Back in bed, I tossed and turned for hours. It felt like someone had attached jumper cables to my toes. My whole body was amped up and electrified. There was some sort of generator hum in my room, coming through the floor boards, vibrating the bed. It felt like a spaceship was idling in the garden outside my window. It felt like I was sleeping directly above the engine room in an ocean liner. It felt like the world’s biggest TENS unit had its electrodes attached to the bed frame. I tried to convince myself it was soothing, like falling asleep while being driven in the car as a child. But it wasn’t working; I was growing more and more desperate and agitated with every hour. Midnight, one, two, three, four… I finally went downstairs to where my husband was sleeping and woke him up in a panic. In all of the lonely, sickly, desperate nights of the last two years, I have NEVER woken my husband because there would be nothing he could do. But this night I was about to unplug every appliance in the house and then I was going to bang on the neighbors’ doors and ask them to unplug everything. I was wild. He threw the breaker on the hot tub while I turned off the wifi and all computer things. He told me the clicking was the thermostat (why had I never heard it before?), so I turned the heat way down.

I finally fell into a fitful sleep from 530 to 830am after taking a quarter of a Unisom, but the vibration/hum was still there. The next day, we surmised it was the outdoor garden lights. My husband pulled the plug and it seemed to remedy that particular problem. It turned out something different was going to happen every night.

Another night I awoke drenched in sweat, my body so hot I could have happily jumped into a mountain of snow. I got up and took my temperature… 97.7 degrees. How is that possible? I took it again. 97.2. Maybe it’s my blood sugar, that’s what Dr. Myhill thinks. So, I clattered around the living room until I found my tester kit. 89- totally normal. My room was 68 degrees… I know the sweats have nothing to do with temperature and everything to do with ME/CFS, but I still try to search for a better answer. I was able to get back to sleep after putting on a t-shirt, oddly. It seemed to trick my body into regulating itself.

Another night I fell asleep at 11pm and woke up at midnight with terrible pain in the center of my chest. I sat up and immediately vomited – actually, more like regurgitated – into my mouth. In the bathroom, more came up, but I didn’t have an upset stomach at all. Is this acid reflux? Every time I lay back, the pressure in my chest came back. It felt like all my nighttime magnesium pills had ruptured in my esophagus. Which is maybe what happened. I wound up sitting up until 1am when it felt like whatever had passed on down. My potential 7ish hours of sleep became 5.

Another night I woke from a nightmare where my dog, Bowie, was injured and it was up to me to save him while the bad guys were trying to find me and kill me. And I was too sick and weak to run or carry my dog. I was in a mild sweat- face and chest. This is a recurring dream of mine. I went to the bathroom to clear it from my mind and, on the way back, I tripped over the step the dogs use to get up on my bed. It HURT. My stumble and hard-hitting recovery with both palms on the floor woke my husband below and he texted my phone to ask if I was all right. I didn’t answer because I knew his healthy, peaceful brain would go right back to sleep. However, my sleep was at an end. My throbbing shin and the resulting adrenalin rush insured that.

This is what I recounted on my calendar about another night:

“woke multiple times, flexing muscles painfully, clamping jaw. Wore nasal pillow for while, scared of not breathing, switched to nasal mask, woke up with weird throat closure and odd sound being made by me, switched to full face mask for part of night, finally took 1/4 unisom, got to sleep at 345am. Woke up feeling very tired, very groggy, horrific headache, feel like I have water in my right ear. There is pressure and it’s clogged. DRIVING ME NUTS!”

That’s a glimpse into a week of my sleep. I appreciate that you are willing to read about the deranged mundanity that is my life! I will fight for better sleep and continue to try different tactics and different drugs and, one day, I will sleep, I will heal, and I will live again! I have faith. 🙂

Gratitude: No allergic reaction so far to my new nasal steroid. Also, tomorrow I have an appointment with a new (expensive) doctor. He was recommended to me by someone in a similar health situation and calls himself an “environmental doctor”, but seems to have some success with chronic fatigue and will consider out-of-the-box tests and treatments. Fingers crossed!

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17 thoughts on “Sweet Dreams Are Made Of This.

  1. Michellina van Loder says:

    I can relate, totally relate. Thanks for sharing. Good luck with the environmental doctor: the one I saw helped, somewhat. However, the vitamins and the acid reflux is a huge problem for me and every time and with every visit to a new doctor, there are more pills (mostly natural) and more reflux. Sometimes I find that giving the vitamins a break for a few days helps it go away; but mostly, if I stay off sugar and away from mould (and stress–ha, ha. How does one do that?) and all day type chemical exposures (e.g.: leaving my house, besides for walks in fresh air), then I can be free of it.

    Your reflux suggests that you either don’t tolerate the vitamins (or one of their ingredients) or that you need probiotics of some sort.

    Peace to you friend, and I hope you get some good rest soon.

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  2. Jackie says:

    What an awful run of it you’ve had. It’s so stressful not being able to sleep!! It is just laying there, begging the chronic illness Gods to allow you some sleep, thinking how messed up your next day will be without the sleep, saying “1-2-3, SLEEP!.. no? darn. It’s just so awful. There are nights where I think of all the things I would do/trade for the ability to go to sleep all on my own, without any meds/supplements to help me. LOL

    However, I do consider myself extremely lucky that generally, (with meds/supplements) once I fall asleep, I stay asleep for most of the night. I cannot sleep if there is any noise except the blissful noise of my fan (pointing away from me) on high, so the clicking sound would have drove me mad too.

    I don’t really have any advice, but I do hope you get some better sleep soon! I take a drowsy antihistamine at night. It is the antihistamine in NyQuil, but just isolated. I know you’re super sensitive to drugs and tend to prefer supplements, but I just thought I’d throw it out there.

    I’m thinking of you! May the Sandman visit you early tonight!

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    • E. Milo says:

      Thank you for the comment! I think about you all the time when I’m lamenting my sleep. How I would love to sleep 10 and 11 hours! And you know what it feels like to have your health turned on its head when you only get 6 or 7 hours. Do you still take Xanax and Ambien? I tried my first Xanax last week ~ 1/4 pill. It didn’t do anything and I got a small hive, which has me fearful to try it again, but I still might.

      I used to dream of living in New York, but after reading a recent NY Times article about the noise causing all sorts of sleep havoc, I am counting my blessings that I’m not smack-dab in the middle of a big city. Even Dublin at my mother’s house is so noisy!

      I think the antihistamine in Nyquil is Doxylamine succinate, which is what Unisom is. It is the ONLY thing that has consistently helped my sleep (again, 1/4 pill, which equals 6.25mg), but I have to take it sporadically or it makes me feel awful. If I could, I would take it every night. If I hadn’t discovered it, your advice would have really helped changed my sleep, so keep throwing things out there! 🙂

      Last night was a terrible night again, but I’ll keep trying… xoxo

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      • Jackie says:

        I wonder what dosage the Xanax was. I don’t take the Xanax every night anymore, but it does help if the reason I can’t sleep is stress or anxiety. I’m on a pretty low dose (.25mg). If stress is not the reason, (i.e.: my body just can’t sleep), no help.

        Unisom is the same thing as what I take – -we’re medicine sisters! LOL

        I do still take Ambien most nights. I break off bits of a 10mg pill (way too much IMO).

        My routine is… I try to shoot for no blue light 3 hours prior to bed. I installed this program on my computer that eliminates blue light, but I shoot for no phone/TV/iPad. Before getting into bed, I take a magnesium-calcium then I take a warm, epsom salt bath and just relax or read a book. I hop in bed, usually around 11. I start out with the antihistamine every night, then read until I feel drowsy, and then if I still can’t sleep after laying in silence/darkness for at least 30 minutes, I take Ambien. Then I read for 20-30 minutes, try to sleep for 30. On and on till I’m asleep. Usually (knock on wood), as of lately, it just takes one or two rounds and I am asleep by 1AM! I typically get up between 10 and 11 AM. I also try and avoid standing if I can once I get in bed because in my body, (hyperandrenergic POTS), adrenalin is released each time I stand up which is not conducive to sleep!

        A few weeks ago I couldn’t take the antihistamine due to testing, and a full 10mg Ambien and Xanax didn’t put me to sleep! It was awful. I tried Valerian Root. Have you tried that? It smells like decomposing something… yuck. It did seem to help a bit, but not much.

        I wish it was as easy for you as it is for me. Yes, I require supplements, medications, and a strict routine, but at least I can get to sleep and stay that way!

        I forget, have you ever had your AM/PM cortisol levels checked?

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  3. My dad has acid reflux (runs in his family – grandma’s got so bad that she stopped eating meat cause it always got stuck in her throat) and swears that the Aloe I gave him works better than prilosec/etc. – and more immediately. Now I give him presents of the single use packets so he can take them to work with him! Maybe that would help? Hugs!!!

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  4. First off good luck at the new doctor. But sorry to hear about the awful sleep, I threw out our kitchen clock one night/early morning. the damn ticking annoyed the crap out of my ears. I also find our sky box annoying when its turned off, there is a low hum and our wifi does this crackling thing. But guess what, Im the only one who hears it, my husband cant hear a thing. We are bloody dogs at times. I really feel for them on haloween now, the poor things. I hate the night sweats and like you have often taken my temperature, hoping ive actually got a fever so as to explain it. I sleep in dry fit tshirts, you know the ones for sport. Ive a stack of them from my running days and they sort of lick up the sweat and I find them helpful. I still wake up stinking of BO, sorry for the picture, but they are of some help! Wishing you a better weeks sleep and again, best of luck with the new doctor. (There is a small bird wagging its tail outside my window at the moment, I think he too is wishing you luck!)

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  5. Trisha says:

    I can totally relate to the little sounds driving you crazy. I have spells like that once in awhile and it’s awful. It’s like I suddenly develop bionic hearing because normal, everyday things suddenly become super loud. and I feel them in my body in addition to just hearing them. I hope the new doctor has something that can help you with all this and I hope better sleep is in your immediate future.

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  6. BONNIE JOHNSON says:

    I’VE ALWAYS BEEN A TOTAL NIGHT PERSON–SO NOW I GET TO INDULGE THAT!! IF I DON’T READ FOR SOME TIME BEFORE LIGHTS OUT, I CAN’T SLEEP. SO NOW I READ UNTIL I CAN’T KEEP MY EYES OPEN–USUALLY UNTIL 3 A.M! ( IT SEEMS I WAKE UP AT NIGHT!) I TAKE 1 MG OF ATIVAN TO HELP ME SLEEP THROUGH–I WAS WAKING UP GASPING 4 BREATH & MY PULSE POUNDING!! I’M USUALLY UP ABOUT 1 P.M. & IT TAKES ALL DAY TO GET BRAIN & BODY MOVING!! NOW I HAVE ARTHRITIS IN BOTH HIPS, THEY WAKE ME UP, SO I GET ABOUT 5 HOURS OF SOUND SLEEP. THE REST IS TRYING TO GET COMFORTABLE, ETC. GOOD LUCK WITH YOUR NEW DOC. I’M A FIRM BELIVER IN NATURE’S HEALING POWERS & WHY I BELIEVE SO MUCH IN ESSENTIAL OILS. BTW, A REALLY PURE LAVENDER REALLY HELPS A LOT OF PEOPLE TO SLEEP. PUT ON SOLES OF FEET, PULSE POINTS, PILLOW, DIFFUSE IT–JUST MAKE SURE IT IS HIGH QUALITY. YOUNG LIVING HAS A BLEND CALLED ”PEACE & CALMING” WHICH MANY PEOPLE ALSO USE.

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    • E. Milo says:

      I was a night owl, too. I miss my late nights! But I realise I will never sleep past 8am – usually not past 7, so I force myself to bed. I can’t do lavender, BUT my massage therapist recommended Thieves and it made me think of you! Can you tell me how to order it?

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      • BONNIE JOHNSON says:

        YES–I JUST POSTED, THEY HAVE A WEBSITE & FB PAGE–SO MUCH GOOD INFO. I INCLUDED MY MEMBER # AS THEY WILL ASK WHO TOLD YOU & IF U WANT TO GET AT WHOLESALE–24 %,’ OFF, YOU NEED TO BE A MEMBER. NO POINT IN PAYING RETAIL AS OILS R EXPENSIVE BECAUSE OF QUALITY & ALL THAT GOES INTO GROWING & PRODUCTION, BUT ONE LITTLE BOTTLE GOES A LONG WAY!! YOU WILL BE FACINATED BY THIS PRODUCT–IT’S AMAZING. IT IS SO MUCH PURER THAN ANY I KNOW OF–U CAN TELL JUST BY SMELLING IT & WE CFS PEOPLE NEED ”PURE”! HOPE U’LL TRY IT!

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      • BONNIE JOHNSON says:

        I GUESS I PUT THAT ON THE OTHER ONE–IT’S youngliving.com & SO MUCH GOOD INFO. A WORLD WIDE COMPANY NOW & ONLY 15 YRS OLD! ”YOUNG LIVING ESSENTIAL OILS” & MY MEMBER # IS 442161–BEEN A MEMBER 10 YRS–AS I SAID TO GET AT WHOLESALE. NEVER BEEN WELL ENOUGH TO PROMOTE THE WAY I’D LOVE TO BUT I DO KNOW I’M BETTER BECAUSE OF THE THINGS I USE!! BJ.

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      • E. Milo says:

        Bonnie, OMG, Thieves is more than $44! Holy crap, I had no idea. Bummer 😦

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      • BONNIE JOHNSON says:

        THAT SHOULD BE RETAIL–NOT ”WHOLESALE”, WHICH IS THE WAY TO GO. I HAVE A PAGE ON FB CALLED, ”THE POWER IN CREATION”–LOTS OF GOOD INFO. OR youngliving.com, member # 442161. BELIEVE ME, THIEVES IS WORTH IT! NO FLU SHOTS IN 11 YRS. KEEP IN MIND, U NEED SO LITTLE–A DROP ON SOLES OF FEET; THERE IS 250 DROPS, SO EVEN IF U PUT IT ON EVERY NIGHT, THAT’S 4 MONTHS & I ONLY USE IT WHEN I FEEL SOMETHING COMING ON OR I’VE BEEN EXPOSED, IN PUBLIC, ETC. I GET MINE HERE IN CANADA FOR $31.75. LASTS ME A LONG TIME. IF U LIKE DIFFUSING OILS, IT KILLS 99.9 % OF BACTERIA, VIRUS, FUNGUS, MOLD! YOU GET THE PICTURE!! SMILE. WORTH THE INVESTMENT, FOR SURE!! TRY IT. BJ. SORRY, I SEE I REPEATED MYSELF FROM BEFORE!

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      • E. Milo says:

        Thanks for the feedback… I don’t think I can do it, but maybe I’ll ask for it for Christmas. 😉

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      • BONNIE JOHNSON says:

        THE GIFT THAT KEEPS ON GIVING! I HAVE TO MAKE MY OILS PART OF THE GROC BUDGET–WON’T BE WITHOUT THEM. GOOD LUCK.

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