CPAPtalk.com

Sorry for long post but all the research I have done has not been helpful in calming my mental health state related to using a CPAP machine. This has been a very challenging journey for me. Negative from the start. Hence looking for new doctor. I have been to a sleep specialist (like her). An ENT also under going some treatment since seeing them and I am going to order an oral appliance through my dentist. I am not looking for criticism and I understand there are benefits to using a cpap. I try to turn it into positive but as the arrival of the machine is now upon me I am reverting to negative space again. Not because of the mask but because of the tether of the hose. Also because of shame and embarrassment. I already have bought storage for the device so I can hide it until dark. I am married and don't want him or anyone including myself to see me with it on. Remember I know there are benefits. This is a deep psychological thing. I am going to see a DO in June. I am hoping she will be able to trwat me as a whole person. My goal is 100% to do what I need to do to get of the machine even if it takes weightlose surgery, GLP1s etc. with this goal I am worried I will be devastated if I can't make it happen. This year I wanted to free myself of things that weigh me down, simplify, reduce stressors and now I feel like this is a 1 ton brick weighing me down. Also, since being diagnosed in March my blóod pressure and stress levels have escalated especially when receiving calls or correspondence from physician who diagnosed with it and when entering medical facilities. I have also had more anxiety when faced with stressful situations at work. I do not want medications to make me "feel better." I believe I need some deep psychology and behavioral therapy to get over this. Has anyone felt similar? Have you been able to find a therapist to help overcome these feelings? Just typing this has raised my stress and BP. Hard to believe I am here. Please remember I do understand the benefits and draw backs of all therapies have researched extensively and shaming or fear tactics turn me off. (Also why looking for new physician).

Just learn to use the CPAP and screw all the rest.

Untreated sleep apnea can destroy mental health. With successful treatment, mental health often improves quickly.

Bubbles2024 wrote: ↑

Sun May 26, 2024 6:53 am

Also because of shame and embarrassment. I already have bought storage for the device so I can hide it until dark. I am married and don't want him or anyone including myself to see me with it on. Remember I know there are benefits. I believe I need some deep psychology and behavioral therapy to get over this.

Yes, I think you do need some therapy to learn to live with your OSA diagnosis and the fact that CPAP has been prescribed for you.

While many people are disappointed, angry, and/or ashamed after getting an OSA diagnosis and are nervous about starting CPAP, what you've described is extreme.

The idea that you can't stand for your husband to see you with the mask on is denying yourself a potentially great source of support. I would never have made it to becoming a reasonably happy xPAPer without the loving support of my husband as he put up with and comforted me on many a night in the early going where I genuinely wanted to throw the machine against the wall.

Moreover, the idea of "hiding" the machine each morning and only dragging it out to set it up in the evening and not allowing your husband to see your mask or machine is indicative of the great deal of shame that you are feeling, and it's important to realize that the shame you are feeling is unwarranted.

Even if you are overweight, you did not ask to develop OSA. It happens. Yes, perhaps your weight gain caused the OSA. But perhaps the untreated OSA caused the weight gain. There are studies out there that do indicate that for some people with untreated OSA, the changes in their body's physiology may make it easier to put excess weight on and much harder to take the weight off.

I'll also add this: I believe that "hiding" the machine each morning and dragging it out to set up each night is going to add to your anxiety about actually trying to sleep with the thing. It's also going to make it even harder for you to accept that this machine is now part of your life and all it does is blow some air down your throat when you're asleep. In other words, even though there is a machine involved, xPAP therapy is about as benign of a medical intervention as you can get---it's only air. No drugs. No operations to permanently insert something in your body. Just a mask on your nose and air blowing down your throat. But if you hide the machine even from yourself during the daytime, that's likely to make your anger and shame even greater when you have to force yourself to dig it out of your storage device. Leaving it on the bedside table will not only minimize the daily work involved in setting the machine up, it will also help you learn to ignore its presence in your life during the daytime.

Has anyone felt similar? Have you been able to find a therapist to help overcome these feelings?

In my case, I was resentful of and angry about the OSA diagnosis, in part because I am not overweight and never have been---I'm 5'1" and weigh about 115 now. When I was diagnosed 14 years ago (at age 52), I weighed about 110 lbs. I also had little or no daytime sleepiness before I was diagnosed, but my husband had witnessed multiple apneas and was terrified that I quit breathing at night on a regular basis---that kept him awake more often than I realized. And I did the sleep test at his request. And my OSA was the first chronic health problem either of us had been diagnosed with. So along with my anger there was a sense of impending doom about accepting my own mortality tied up with the diagnosis.

I'll also be honest: I had a much worse than typical physical adjustment to CPAP, but I don't want to give you even more reasons to dread your new machine so I won't get into the details. At the suggestion of a caring PA who was treating my chronic migraines at the time, I did go to a psychiatrist who recommended a psychologist for cognitive behavior therapy (CBT) for helping me to accept the presence of the machine in my life and learn to sleep with the machine instead of fighting it and all things related to CPAP with my deep seated anger at the whole thing.

And yes, the CBT helped a whole lot, but it also involved some real work on my part. In particular, it involved learning to use less loaded words than "hate" to describe the CPAP and the OSA diagnosis. It involved learning to use words of acceptance for the OSA diagnosis and learning how to change my own feelings toward the whole CPAP mess (and my difficult adjustment) by setting realistic expectations for both myself (and my emotions) and my therapy. It also included establishing "baby steps" towards my ultimate goal of becoming a reasonably happy PAPer. And it involved learning how to let go of my anger and my sense of shame.

So yes, I can tell you that I had my own deep psychological issues to deal with in terms of accepting the OSA diagnosis and learning to accept the CPAP machine's presence in my life. And the CBT therapy I did with the psychologist was well worth it and my only regret is not starting it much, much sooner: I was almost 9 months into CPAP therapy and still angry, upset, and highly emotional by the time I finally got the help I needed. I would strongly encourage you to get the help you know you need now as opposed to waiting weeks or months the way I did.

Thank you. It means a lot to be able to her someone talk very openly about their own psychological adventures with this. I know how I feel about this and in all the research I have done even searches for behavioral therapists who work with sleep apnea people I can't find any. It is so frustrating. Thank you for your words of encouragement. Both my parents where diagnosed but both lost weight and reduced stress and never have been on a machine and don't need one. I will get mine do what I can to try it but like I said if it's generic than I would rather do the work they did and change my lifestyle that way. I will try it but it's not stopping me from achieving more. My storage is actual just a rolling cupboard with doors that open in all sides. So I can set the machine in it open a door for plug in and run the house out as well. It's a cool things can contain all supplies and looks descent. So really once it's setup it's setup. Just close the front door during the day. I know it's there but and hubs will know but no one else will. Strangers are good to talk to about it and only very close friends but that's it. To address the hose issue... I worry about getting tangled in it. It leaving pressure marks on my skin. The feel of it on my skin and being tethered. The home sleep study was awful. I felt like things weren't attached right I. Stuff would fall off. I didn't really sleep so not sure what data they got but whatever. What is some can't be undone. It will be fine. I'll just pretend I'm a fighter pilot.....

Bubbles2024 wrote: ↑

Sun May 26, 2024 11:13 am

I know how I feel about this and in all the research I have done even searches for behavioral therapists who work with sleep apnea people I can't find any. It is so frustrating.

The psychologist I worked with was just a CBT guy. He didn't have any special training or knowledge per se of CPAP or sleep apnea. But he listened really well to what I was describing in terms of my feelings and he made good quality suggestions on what I needed to do in terms of adjusting my own attitudes towards the machine and the diagnosis. I think he had worked with people who had insomnia problems before. And he had clearly worked with people who had problems dealing with significant medical diagnoses. But the main thing was that he really understood CBT and wanted to work with patients who wanted to avoid drug therapy for anxiety issues.

In other words, it may be more important to get a good CBT therapist that you relate to well rather than trying to find a therapist who has worked with sleep apnea patients in the past. Back when I started this adventure, the sleep docs seemed to be oblivious to the idea that someone might need some psychological help in coping with CPAP.

I know it's there but and hubs will know but no one else will. Strangers are good to talk to about it and only very close friends but that's it.

Who goes into your bedroom?

And by not talking about OSA you are feeding the stereotype that OSA is something to be ashamed of. If you don't want people to shame you, then it's important to not act like OSA is shameful yourself. Think about it. Would you be ashamed if you were an insulin dependent diabetic and had to keep your insulin in the fridge? Would you be ashamed if you had high blood pressure and someone saw your blood pressure medication on the counter? Why are you ashamed that you happen to have OSA and (right now) are supposed to use a CPAP to treat it?

To address the hose issue... I worry about getting tangled in it.

This is an extremely common fear for new PAPers. There are lots of ways of dealing with hose management. Some people drape it over the headboard. Or hang the hose on a hanger overhead. I hug the hose next to my body. As I turn, the hose turns with me. Lots of people around here can help you figure out hose management based on such things as your favorite sleep position and how much you think you toss and turn. For what it is worth, I am now a lot less restless at night now that my CPAP therapy has been optimized. I no longer tear the covers apart every single night---that's something my husband greatly appreciates.

It leaving pressure marks on my skin.

Yes, some masks are prone to leaving pressure marks on the skin. But there are lots of different masks, and even full face masks are now available without the dreaded "forehead support" piece that is the primary cause of pressure problems in a properly adjusted mask.

Also be aware: Lots of respiratory techs---who do the actual fitting of the mask---do not understand that a properly adjusted mask does not need to be so tight that it causes pressure marks around the nose and/or mouth where the mask cushion rests against the face. If your RT insists that the mask needs to be so tight that it's leaving pressure marks, just readjust the mask much looser when you get home or when the tech leaves.

Be sure you understand your DME's mask return policy and use it if you are set up with a mask you don't like. Look through the vast numbers of masks available at CPAP.com (our host). And be aware that mask liners can also help with the problem of pressure marks.

The feel of it on my skin and being tethered.

Hose cozies go a long way in eliminating the feel of the hose on your arms. As for the mask: There are mask liners for nasal and full face masks that prevent the mask from touching your face. There are barrel cozies to prevent the barrel part of nasal cushions from touching your lips. These are things that lots of folks around here can help you with.

As for being tethered, the hoses are long enough where you can pretty much move around in bed as much as you like. But just as important, you may find that once the apnea is treated, you sleep more soundly and you just plain don't wake up needing to move around in bed as much as you used to.

The home sleep study was awful. I felt like things weren't attached right I. Stuff would fall off. I didn't really sleep so not sure what data they got but whatever. What is some can't be undone. It will be fine. I'll just pretend I'm a fighter pilot.....

Be thankful that you don't know about how uncomfortable an in lab test is. Not only do you have even more wires and stuff, you also have a camera in the room and you know someone has the job of sitting there watching you sleep all. And you're sleeping in a strange place in a strange bed. No matter how much they try to make it look like a nice hotel room, you know that's not why you're there.

But here's the thing: They only need a couple of hours of fractured sleep to figure out that you are having apneas while you are asleep.

And ask for a copy of the sleep study report along with the summary graphs. Seeing the actual report will help you make a whole lot more sense of what is going on.

Terrific posts from robysue1. A few additional thoughts:

If you use a hose cozy, you can also use a safety pin through the cozy to secure the hose to your bottom sheet so you don't accidentally tug on it too hard.

I felt very "private" about my need for CPAP when I started, but over time I realized there are a lot of people in my life who also use it. So far, two old friends who had somehow never mentioned it because they were such old hands; two neighbors on my block; and two work colleagues. And my husband and I play "spot the ResMed bags" in the airport. We always see them.

Speaking of husbands. Does yours know how you feel?

And one final thought: the way you feel about it now is almost certainly not going to be the way you feel about it after you get going. These feelings aren't going to go on and on. Maybe that's one less thing to worry about.

Many of us have shared similar feelings when starting on their CPAP journey. I felt a bit embarrassed when I first started, but my worries were unfounded. My hubby appreciates having a more rested, energetic wife. He’s also happy to no longer be awoken by my snoring and gasping for air all night long:)
My brother resisted my advice to get a CPAP for years because he was self conscious. He tried oral appliances and everything else for years, before he finally gave and got a cpap. Despite his insecurities wife is nothing but supportive. While I haven’t asked, my guess is his wife being able to finally sleep in the same bedroom has helped in the romance department.
Don’t hide your CPAP from your hubby, give him the opportunity to support you. How would you feel if hubby kept secrets from you?

Even if you can’t find a mental health professional who specializes in sleep you should still see someone. It sounds like your worries surrounding using a cpap are more about your likely unjustified low self esteem, rather than OSA itself.

Finally as to the weight issue, if it was so easy to loose weight you would have already done it. As others have pointed out while being overweight increases your chances of developing sleep apnea, there’s no guarantee that loosing weight will cure it. I’m one of those who doesn’t fit the preconceptions of what a sleep apnea patient looks like, I weigh 115 lbs. Also there’s a good chance treating your sleep apnea will make it easier to loose weight, it’s so much easier to exercise and eat healthy when you aren’t exhausted!

Assuming your OSA is mild the oral appliance is better than nothing, although it will likely cost you a pretty penny.

Good luck, I hope you are able to find the path to a better nights sleep!

Thank you.... I never knew I was tired and hubby never said anything nor did he ever notice me waking up gasping for air cause I didn't. I am seeing a therapist online and he has helped me a little. I just don't see him again for several weeks.

I haven't lost weight cause I never felt a reason to. Lack of motivation. I have dropped 12lbs in a month at first because I hated the sight of food after being diagnosed. However, I decided to capitalize on the first 6 I lost because of not eating for a week and decided to eat mostly low no calorie and get a take outbox as soon as I order food at a restaurant half goes in the box. Lost another 6 just doing that. It's not I can't it's I didn't feel motivated. I also supplement one .meal a day with a protein drink only 160 calories. Also, if I would have known this was coming I would have had some kind of surgery which I have thought about for years or tried the GLP1 injections. Might not be where I am today. So there isn't anything set in stone it won't work if people can have faith in a machine than I can have faith in other things potentially making a machine go away. So just as I have started the process to get a machine I have started the process to drop pounds. I am worried though because I have read research saying that CPAP can actually cause weight gain. So if that happens I'm screwed and will most likely look at surgery. I have undergone various surgeries before they don't frighten me. Has anyone had the machine cause weight gain here and if so what did you do about it?

Bubbles2024 wrote: ↑

Sun May 26, 2024 4:13 pm

Thank you.... I never knew I was tired and hubby never said anything nor did he ever notice me waking up gasping for air cause I didn't. I am seeing a therapist online and he has helped me a little. I just don't see him again for several weeks.

I haven't lost weight cause I never felt a reason to. Lack of motivation. I have dropped 12lbs in a month at first because I hated the sight of food after being diagnosed. However, I decided to capitalize on the first 6 I lost because of not eating for a week and decided to eat mostly low no calorie and get a take outbox as soon as I order food at a restaurant half goes in the box. Lost another 6 just doing that. It's not I can't it's I didn't feel motivated. I also supplement one .meal a day with a protein drink only 160 calories. Also, if I would have known this was coming I would have had some kind of surgery which I have thought about for years or tried the GLP1 injections. Might not be where I am today. So there isn't anything set in stone it won't work if people can have faith in a machine than I can have faith in other things potentially making a machine go away. So just as I have started the process to get a machine I have started the process to drop pounds. I am worried though because I have read research saying that CPAP can actually cause weight gain. So if that happens I'm screwed and will most likely look at surgery. I have undergone various surgeries before they don't frighten me. Has anyone had the machine cause weight gain here and if so what did you do about it?

Loosing 12 pounds in 1 month is unhealthy and unsustainable:(
It’s the flip side of the same coin. Whether your overeating or starving yourself, both show an unhealthy relationship with food. Glad you’re seeing an online counselor, hope you’re being completely honest about your struggles.

Bubbles2024 wrote: ↑

Sun May 26, 2024 4:13 pm

I am worried though because I have read research saying that CPAP can actually cause weight gain. So if that happens I'm screwed and will most likely look at surgery. I have undergone various surgeries before they don't frighten me. Has anyone had the machine cause weight gain here and if so what did you do about it?

My weight has gone up a whopping 5 pounds since I started CPAP 14 years ago.

Now since I only weighed 110 pounds to start with, a 5 pound gain is not insignificant, but it's also not enough for me to worry about.

I attribute the weight gain to two things:

1) I am now well past menopause and I was just starting menopause when my CPAP adventure started. And fact is a lot of women find that their metabolism changes just before and during menopause in lots of ways. And some women find that they do gain weight just before and during menopause.

2) I no longer am fighting in my sleep every night. I would literally wake up with my hands in fists and my feet curled up as tight as they could even though I remembered no wakes during the night. (The hand and foot pain was written off by my doctor as most likely caused by arthritis when a blood test showed some signs of low grade inflammation.) In other words, I was arousing (fight or flight) before O2 desats could occur and my body was going into fight or flight mode all night long. In retrospect I think the excessive cortisone my body was releasing all night helped keep my weight around 110 my whole adult life without me thinking much about my diet. Now? Without that cortisone coursing through my body every night, I'm not burning calories at night. Instead, my body is actually getting real restorative sleep each night. And I don't wake up with my hands and feet in fists and the hand/foot pain disappeared completely about 6 months after I started CPAP.

I still don't worry a whole lot about my diet or my weight, but now that I am on the high side of 65, I know that I really do need to eat less carbs and more fruits and veggies and watch the kinds of fat in my diet. Unfortunately, carbs, as in bread and rolls and cereals and bake goodies of all kinds, are my downfall in terms of diet.