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Groggy & Frustrated - Feeling like a failure w/ CPAP


#1

I was diagnosed several years ago with SOSA. CPAP machine sits on the night stand. If I put it on, I lay there waiting to fall asleep and eventually get frustrated and take it off and roll over. Yes, this is real. I’m tired and frustrated in the morning because of my lack of ability to sleep with it on – then I take a pain reliever and caffeine to get through the day.

I have a good mask now. I’ve done an update sleep study and have a newer machine.

I just need some compassionate suggestions on falling asleep with this thing on my face!!!


#2

U do not need compassion. Just do the machine. Swallow hard or things get worse. Get off pills and caffeine that compounds sleep disorder :pray::pray::flashlight:


#3

Wow, I joined this group today for support and I got stern marching orders. No thanks.


#4

Hi GroggyinSMD.

It looks like you really have a great start on a second try with CPAP. It’s a huge hurdle just to find a good mask and the newer machines are whisper quiet.

I had to “soothe-talk” myself to be able to get to sleep with my CPAP at first. It would go like this…“I’m just not used to this. I’ve been going to sleep a certain way for all my life and my brain has gotten so comfortable with that. Now I must sleep a different way so I can be healthy. My brain really doesn’t like this. It’s a big change. But, I know if I keep on sleeping with my mask and machine each night, my brain will adjust and think that this is my new way of sleeping. My brain will even like it. I must outlast my brain for now. CPAP is my very best friend. It’s going to spare me from so many chronic health conditions. I will get to have a longer life and even my quality of life will be better now. This is a great machine. It’s so quiet. I’m not snoring anymore so I’m quiet too. I’m so blessed to have this machine and this therapy and to be living in this day and time. I love life. CPAP will help me live…”. Breathe in. breathe out, find more reasons to be thankful and repeat, if necessary until you just let go and fall into dream land.

It takes time and persistence to adjust to CPAP. There a fortunate few of us who adapt overnight, but for most of us it takes anywhere from a few weeks to a 6 months to adjust fully. The adjustment time is sped up when we do not allow ourselves to remove the mask. Or, if the above technique doesn’t succeed on the first try, do take off the mask…but get up out of bed and read a relaxing book for awhile until you start to feel really sleepy and ready to nod off. Get back in bed, mask up, turn on your machine and go through the process once again, repeating soothing, positive thoughts to yourself. Don’t worry about your ability to sleep with that thing on. Tell your brain that “this is my new way of sleeping now”, “I’m not going to sleep any other way ever again for the rest of my life”, etc. Be in the moment. You are sleepy. You’ve got to get some sleep, right? Tell yourself that many other people in this world sleep this way and they like it. If they can do it, so can I.

So, you see, you really can “talk” your way out of the “I can’t do this” complex. Try this. Believe me, if your body is still resisting this through the second night, by the third night, your need for sleep will simply overwhelm any remaining resistance and you will sleep…with your mask and machine on…all night long. When you finally do have that successful night with CPAP, tell yourself, “see there!..I really can do this…I did it!..I’ll do this again tonight!” And repeat…over and over…until it is simply the way you sleep, always.

I wish you so well on your apnea journey. Your patience and persistence will pay such great dividends.

Take care.


#5

Your sleep talk is the best! Great suggestion…


#6

I hear you loud and clear. I can’t use mine for the very same reason. Even if I do happen to fall asleep with it on, there is a fifty-fifty chance I’ll throw it off before I wake up. I actually sleep better without it when I can get at least seven hours of sleep.


#7

Thanks SpiritWalker and SnuzyQ for affirming I am not ALONE in my struggle. SnuzyQ, I am trying your sleep-talk method, not yet successful but I’m trying. I’m a health educator by trade and I’ve spent years encouraging lifestyle changes in people and I felt I needed some encouragement myself for my own issues. So thank you!!!


#8

Have you looked into the Gel Pillow CPAP system? Respironics DreamWear makes the one that I use.
I didn’t like the various masks I tried when first diagnosed and I think that interfered with me getting to sleep. This system has a nasal pillow version with the air going only into your nose and thus keeping your throat open. The air goes from the CPAP through a tube attached on the top of your head, then the CPAP therapy air travels through the frame to your nose. There is a choice of size for frames and gel nasal pillows. It is less confining and doesn’t give one the feeling of an all encompassing confining mask. Of course, it is the sleep you are craving and that might just help. Ask your physician and, if you have one, your home health respiratory company.


#9

I am 80 and am not about to give marching orders to anyone… but did retire a Master Sgt… about Cpap, some masks have available soft cloth wraps to encircle the bands that touch skin and neck areas. I have the ResMed Quattro full face mask and thought I never would get it right, then ordered the soft wraps, and now usually sleep 7 hours before taking it off. I rate 100% on the CPAP app chart… I have no leaks and just have trained myself to relax once the mask is on. I usually fall right asleep within 2 or 3 minutes. Of course, I only drink one cup of black blood a day, and that is first thing in the am with my breakfast. I don’t drink pop of any kind, and have only a small bit of exercise daily. Work in my woodshop, for instance. I have had almost every type of mask… even the all cloth unit that grabs only the nose, and the stick it in your mouth thingy and then jam two air injectors up your nose. ya vol…done it all, and ended up with the ResMed quattro full face. but if you do go this path, be sure to get the cloth pads. Ignore the Nose Nazi. Being cantankerous is a sign of old age and perhaps some shortfall in life-style. Surely, He needs some heavy-breathing excercises with his in-house long-haired mess cook with the lifetime, till death does us part, contract.


#10

Hey GroggyinSMD,

I was diagnosed with OSA in 1986 while I was still on active Duty USN. The Sleep Lab at Balboa Naval Hospital recommended UPPP surgery where they removed my tonsils, adenoids, and shortened my upper palate. It was not successful. I lived with it for another 20 years and had another sleep study in 2006 at the VA hospital in Detroit. I found out quickly that I just was NOT compatible with the CPAP they gave me. I was also diagnosed with PTSD due to some incidents while in the military. I tried off and on for another 12 years to use the CPAP and I just couldn’t do it.

Then, last December my primary care provider referred me to the University of Michigan Sleep Center for another sleep study. The sleep study showed my AHI (respiratory event index) was 50. In other words, I would stop breathing almost 50 times in one hour.

I had a sleep endoscopy to inspect my airway to make sure I qualified for a new and FDA approved device called “Inspire”. It is used as an alternative to CPAP. Below are some links to familiarize you with it.

https://www.inspiresleep.com/what-is-inspire-therapy/how-inspire-therapy-works/

I had the surgery in April of 2018 and the device was activated 30 days later after the incisions were healed.

Results:

I no longer stop breathing in my sleep. My better half can immediately tell if I fall asleep having forgotten to turn the device on with the remote. With the device on, it sends regular pulses to the hypoglossal nerve (motor nerve for the tongue) that moves it out of my airway.

I no longer snore. Before my snoring could have moved mountains.

I used to sleep, or try to, anyway for 8-10 hours and I would wake up feeling like I’d been run over by a train. Now, I wake after 6-8 hours feeling refreshed and ready to tackle the day.

Talk to your doctor about Inspire therapy and show your Dr. the information in the links.

Best of luck to you, brother!


#11

There are other routes you can take if you ultimately just can’t adjust to CPAP therapy & after giving it all your best try over a period of time. Besides the Inspira mentioned above (which requires surgery & anesthesia), you might ask your Sleep Doctor if the electrical leads put on your face for the sleep study indicated that you have TMJ, Bruxism or some other Malocclusion in addition to Sleep Apnea (they all usually go hand-in-hand with sleep apnea). If your Sleep Doctor confirms that in fact you do, ask either him, your Primary, a trusted Ear, Nose & Throat doctor (who are also very good to consult anyway to find out if you have any other structural problems, too, like a deviated septum or constricted turbinates - your nasal passages, or even if your nose & throat indicate you have allergy problems), or then an Allergist/ Immunologist for a referral to a special type of dentist called a Maxilofascial Specialist (& is often a M.D./Surgeon in addition to being a D.D.S.) that specializes in the treatment of these conditions that have caused you to have sleep apnea. This type of dentist can make a special type of splint for your mouth (they’ll take a panoramic X-Ray & take mouth impressions to make one just for your mouth only, & there are different manufacturers of these splints they usually prefer over another, but it’s always good to discuss various ones before spending money on one, as they’re rather expensive, but then they also last a long time). It’s a way different sort of splint than the ones people wear after braces or to treat TMJ or Bruxism only, or from the ones you can often find in a pharmacy or grocery/retail store that says it treats TMJ &Bruxism (those kind usually don’t actually do a lot of good & will be a waste of your money, though they’re better than nothing when it comes to Bruxism). These special splints treat Sleep Apnea & TMJ & Bruxism (all three) & they can be readjusted as necessary to better fit your lower & upper teeth & they re-align your jaws & stop your tongue from sliding to the back of your throat & thereby causing an obstruction to your breathing while your sleeping, which is what is actually happening with Sleep Apnea. These also take awhile to adjust to & they’re often the only treatment you need to use to correct Sleep Apnea, but you, your Sleep Doctor & the Maxilofascial Dentist can decide if you only need the splint, CPAP, or if it would be better to use both together while sleeping.

I have been on CPAP since 2012 & it did take me awhile to get used to using my CPAP machine, especially in that I’ve had a very hard time finding “the perfect mask” for me. I’ve tried many, many masks & mask types & personally I prefer the nasal pillows mask, even though the XS is still too large for my nostrils & they give me pressure ulcers inside my nostrils after a short while. Because of the nose ulcers, I’ve had to switch back & forth between the nasal pillows mask & a nasal mask (which only covers the nose, not the whole face) every couple of weeks. But I get an ulcer under my nose from the nasal mask, too, (& I’ve tried multiple types of these, too). After a couple of weeks with either I have to switch back to one or the other. We’re looking to see if there’s something pediatric now, since I’ve had so many problems with all these masks & my face is rather small.

& I do use the commercially available mask cushions for both types of these CPAP masks (they’re available for full face masks, too) These cushions make your mask more comfortable, stop skin irritation & oftentimes are the solution for a better mask seal. I buy my mask cushions through Amazon, but some Durable Medical Equipment companies (DMEs), Breathing Solutions companies & some pharmacies carry them, too. You can Google “CPAP mask cushions” to look at the different options for different mask types, where you can buy them & what price best fits your budget. But I’ll tell you right off that these reusable (which I prefer as they’re more economical) or single-use cushions aren’t covered by insurance. Thank goodness they don’t cost that much & are a good value considering the discomfort your mask might be causing you & making you wake up at night or to not sleep as well or as long as you would if your mask was more comfortable.

I have both the CPAP & the splint, too, but truthfully I haven’t been able to adjust to the splint as well as I had hoped & oftentimes find that I’ve either removed it in my sleep or it’s caused me to wake to remove it. & Actually, I prefer CPAP over the splint. It all a matter of an array of different solutions for treating Sleep Apnea & it takes time & a willingness to try & try again different approaches to find out what best works for you.

The comments above about breathing exercises are also really good, too. Mindfulness & meditation (& good old fashioned prayer, too - to each our own) help a lot to center yourself & calm you down & slow your heart rate & respirations so that you can fall asleep easier, more regularly & stay asleep better, as well as achieve better quality sleep. Practicing “good sleep hygiene” is also very important in helping you to fall asleep & sleep better (you can Google that, too, if you don’t already know what to do).

I f you have any problems with learning breathing techniques, you might consider the following: One of my friends, who has asthma (as I do, too), told me she uses a spacer with her inhaler (it’s a plastic cylindrical tube that you fit the inhaler on one end & a breathing mask on the other end (comes in face sizes & it’s not a CPAP mask; it’s made specifically for the spacer) & it has a porthole in the tube that lets you breathe in & release air. She told me that it’s helped her a whole lot in learning how to take deeper breaths, hold them longer & exhale more slowly (the porthole will make a whistling sound if you breathe out too quickly or too forcefully) & has helped her to learn how to control & regulate her breathing before bedtime. I’m using one now, too, & I don’t know why my Allergy/Immunology/ Asthma doctor didn’t recommend one to begin with - it’s so much easier to use an inhaler with the spacer. But if you’re not asthmatic, you could possibly ask a friend with asthma if they might have an extra spacer they might be willing to give or sell to you. If not, you could possibly buy one from a DME, Pharmacy, an Online Breathing Solutions store, or Amazon, etc. I will tell you now, though, that these are sometimes covered by insurance for asthma patients & sometimes not, & therefore you might have to pay out of pocket if it’s not covered (they range in price depending on which one you buy & who from, but I’d say somewhere between $25-$40). And, you really don’t need a prescription to buy one either, but it would be great if you could get a recommendation from one of your doctors about which brand their patients seem to prefer or they think is best (I like the Respironics spacer; it has a more rigid mask & maintains a better fit on my face) & what size they think you will require for a good facial seal before you buy one. But first, I would ask a Pharmacy, your Primary or your Allergy/Immunology/Asthma doctor if they happen to have a dummy inhaler (that they get from drug company representatives to show kids & adults how to use an inhaler properly) they’ll either give you or would be willing to get one for you (they should be free), as you’ll need this component to use a spacer. Then when you have both, you can see if it helps you learn to practice breathing techniques better. I added a spacer to my inhaler & do my breathing with that when I use my inhaler, including right before bed. It slows respirations, heart rate & calms me, so I can usually slip off to sleep easier most nights.

Also, don’t be afraid to ask your doctor for a prescription for sleep aid medication to use every now & then. Sometimes it’s very necessary & if you use it only when you really can’t get to sleep no matter what you do (& after getting up to read a boring book & having a soothing herbal tea, like Camomile, or try some other holistic calming technique or product - check with your doctor first to make sure anything herbal won’t interfere with any medications you might be taking), there’s no shame in having to resort to using them as necessary.

Ignore people who judge you. You & your doctor(s) will be the ones to go on this journey together & everyone’s journey is different. You & your doctors will learn what works best for you & whatever is necessary to treat Sleep Apnea or related problems is nobody’s business (except perhaps your significant other), but your own.

Best of luck.


#12

Awesome, informational reply. Thank you - I’m new here and new to Sleep Apnea (or Hypopnea in my case…). I also have asthma and it’s interesting - I found out the same thing with the inhaler spacer. It disburses the drops better into my lungs for breathing. Thank you again!