OSA diagnosis and emotional acceptance

[pammieb]

Thank you to anyone who responds to my posting.

As a new CPAP user (8 nights with a loaner machine from my sleepdoc), I am very grateful that there is something that can help me escape from the serious health issues associated with severe OSA (about 65 episodes per hour). I am able to keep the mask and machine on most of the night and while I don't feel better at this point, I know that will happen. So I am grateful.

My question - I am a pretty strong individual but dealing with some emotional turmoil about having to use CPAP the rest of my life. I am angry at my husband who does not understand what I am going through at this time.

Any resources or stories that anyone can share would be greatly appreciated. I am finding that logging on to this forum for a few minutes each day keeps me from feeling out of control.

Thanks again, Pammieb

[ScottyT]

I'm not sure where you are, but you could try to find an AWAKE meeting near where you live. It's a support group for people with sleep disorders. http://www.sleepapnea.org/awake/index.html

[dorourke]

Welcome to the site
Your lucky you found this site so soon, I had the equipment for 2 months before I found this place, what a disaster those 2 months were, I quit for a week, I had given up on it, thought the whole sleep apnea thing was a complete scam. But with this site I found there is equipment you can purchase to monitor your progress and treatment, and the people are very generous with their time and advice.

I would suggest that you look up the posts about DME's and the equipment that your doctor prescribes. You want to get a full data capable machine.

Best regards

[Wulfman]

Thank you to anyone who responds to my posting.

As a new CPAP user (8 nights with a loaner machine from my sleepdoc), I am very grateful that there is something that can help me escape from the serious health issues associated with severe OSA (about 65 episodes per hour). I am able to keep the mask and machine on most of the night and while I don't feel better at this point, I know that will happen. So I am grateful.

My question - I am a pretty strong individual but dealing with some emotional turmoil about having to use CPAP the rest of my life. I am angry at my husband who does not understand what I am going through at this time.

Any resources or stories that anyone can share would be greatly appreciated. I am finding that logging on to this forum for a few minutes each day keeps me from feeling out of control.

Thanks again, Pammieb

Welcome to the forum.

Issues with spouses and significant others have cropped up on the forum frequently over the years. In fact, I just went to the Search function and searched on "spouse" and there were about 35 pages.....although not all of them were about problems with their acceptance, but here are a couple of recent ones.

viewtopic/t36856/viewtopic.php?f=1&t=35724

viewtopic/t36856/viewtopic.php?f=1&t=35705

Getting them "onboard" with the therapy is extremely important. They MUST understand that sleep apnea does horrible things to a body over a period of time, and using this therapy is a major step to get one's life back.

Hang in there.

Den

[jnk]

. . . I am a pretty strong individual but dealing with some emotional turmoil . . .

The diagnosis and treatment can be quite an emotional roller-coaster ride. At first you feel grateful to know what is wrong. Then you feel confused as all the questions come up. Then you feel trapped by being linked to a machine. Then you feel some grief, even though you can't quite put your finger on what you're grieving. At least that was a lot of what I felt. I think some go through much of that in about 30 seconds, others stretch it out over time, like I did.

But it seems that after some of those emotions, there is a lot of variation in what different people feel. It may have something to do with people's approach to life and how they choose to think about the therapy. I would broadly define two major categories of continuing reactions, just based on my personal observations:

1. Some feel so overwhelmed and trapped that they try to avoid thinking about it all and start to feel so much dread that they actually begin to hate the machine and everything connected with it.

2. Others feel excited about how to make the therapy work for them, and so they begin to gather information and figure ways to customize their setup and their mask. They roll up their sleeves, fall into a routine, and start the grand adventure of problem-solving. Hopefully they land at this site, get some support, and find ways to make it work.

Some of us, I think, go back and forth between the above general approaches, though. And even some in the second category may still feel some conflicting emotions and spells of the blues in coming to grips with it all.

So you are definitely not alone.

And your being at this site and asking your question is helping others who read your post. Not just you.

So, thank you.

And welcome.

jeff

[carbonman]

Thank you to anyone who responds to my posting.

I am very grateful that there is something that can help me escape from the serious health issues associated with severe OSA. So I am grateful. Pammieb

Pam, you have come to the right place.
You are NOT alone.

Myself and others have been where you are now.
It was not easy to begin.
Be patient w/yourself.
Read here and educate yourself and hopefully your husband.
Become your own best therapist.

Don't let any person or circumstance prevent you from
getting the best therapy.
If something doesn't work, try something else.
Many options available.....just ask.

You WILL start feeling better, and when you do
it will all get much easier, physically and mentally.

It's your life.
It's my life.

I am thankful everyday for cpap.
All the best! It's a journey.

[Bluebonnet_Gal]

And your being at this site and asking your question is helping others who read your post. Not just you.

So, thank you.

And welcome.

jeff

Jeff is right - you being at this tie and asking your questions is helping others. I was recently diagnosed with severe OSA (107 episodes/hour) and I didn't get a loaner machine. I'm still waiting to get one. My sleep study was 11-20 and FINALLY, tomorrow morning, I meet with my local DME. I had a split night study and after about 3 1/2 hours on C-PAP, I woke up feeling more refreshed than I can ever remember! I was so excited and anxious. Fortunately I found this site EARLY. I now realize I will likely experience struggles when I start using the C-PAP regularly, so I have lowered my expectations. Over the weekend, I was stressing over whether I would miss my naps! Obviously if I feel I don't need a nap, that is SO MUCH BETTER than always feeling tired!

I look forward to responses to your post from the more experienced on this site. They are a wonderful group of people!

Thanks for your question!

[pammieb]

Thank you to the first-responders to my posting on dealing with the emotional aspects of an OSA diagnosis. Your words and wisdom are greatly appreciated. It really helps to know there is a "community" out there I can tap into and hopefully at some point, be helpful to someone else just starting out.

[Kiralynx]

I received my diagnosis within six months of having cancer surgery. In fact, I got the diagnosis on the same day I also got the word that my first post-surgery cancer labs were negative. Talk about your roller coaster! Incredible relief that I have 4 years and 8 months before I can be declared cancer free combined with the knowledge that I'm going to be sleeping hooked up to a glorified hair drier for the rest of my life -- and the complications this adds to travel, along with my special diet. The complications CPAP adds to hurricane season. And on and on and on and on.

I was fortunate enough to be directed to CPAPTalk by a member of a really excellent diabetes forum here: http://community.compuserve.com/n/pfx/f ... s-diabetes

I don't have diabetes, but I was researching for a friend, and met some really nice people, and stuck around.

With the help I received here, I knew to ask for a fully data capable machine. I bought the software and the card reader. I monitor my progress daily, and in fact, thanks to that monitoring, I realized very quickly that I had a problem with leaks that were between 1.5x and 2x the norm for my mask and pressure. I also realized that the problem I was having wasn't "normal," and discussed the fact that at 14 MaxIPAP, 10 MinIPAP, and 10 EPAP, I was struggling to breathe out with every breath. My EPAP was lowered to 6, and suddenly, therapy was much easier -- and the apneas vanished from my charts. Still getting a handle on the hypopneas, though.

Therapy has given me relief from ongoing hip pain which I'd fought for nearly seven years. Someone who has never dealt with chronic pain has no concept of how glorious it is to sleep through the night without having to rouse at least twice to take anti-inflammatories. Or to wake, and be able to move without sharp pains shooting through the hips and back. I'd put up with much weirder things than a mask for that!

First thing my husband does when he gets home is look at my data for the night before. He's a design engineer whose specialty is in flow issues, so he finds all the charts fascinating. If something isn't in line with my usual, we discuss whether it was just one of those situations where people sleep differently every night, or if it's something I need to do something about.

I'm new to this community, having been on CPAP less than two months. But the difference in my outlook is so different now from what it was the afternoon I walked out of the doctor's office crying because, being claustrophobic, I couldn't face the idea of a mask.

[echo]

Hi pammieb - you've already gotten a great welcome from everyone else, and there's not much more than I can add!

It's understandable that both you and your husband need some time to adjust to the CPAP - both physically and emotionally. In my case, we were both very very enthusiastic that I finally had the solution to my life-long sleeping problems... but lately we've been at odds about the CPAP. The noise is starting to bother him significantly (it's even bothering me, time for a new mask I think), and our disparate sleep schedules are also causing a strain. We're now sleeping in different rooms - I hope it's only temporary but for the moment it's keeping the peace. Neither of us likes it, but at least we're both getting a decent night's sleep now. There was even a thread about sleeping apart recently -so it's not necessarily unusual or even negative for spouses to sleep apart. I can try to dig it back up if it's relevant to your situation at all.

Anyway, my point is that the whole CPAP thing can definitely affect your relationship - but it doesn't have to be negative in the long run. As long as you are both willing to work it out, just like you would any other marital conflict, then that's what's important. Yes, it may take some time, and some compromises in the short or long term, but if you've got the right attitude, then you CAN make it work for both of you.

It might also be a good idea to figure out just exactly why you're mad at your husband - is he having trouble adjusting to the new addition to the bedroom? Does he not understand the significance of how serious OSA is? Is he making jokes that make you uncomfortable or annoyed? Or are you angry that you have to deal with the CPAP and he doesn't? Are you feeling alone in this new journey? (that's what we're here for! )

If you can figure out the cause of these emotions, then you can also find a strategy to deal with the frustration and anger. It's NORMAL to feel these emotions, so don't beat yourself up about it either. Just give it some time, try to get comfortable with the physical aspects of the treatment, and hopefully over time you will gain the strength and energy to deal with the other issues (as your sleep gets better!). I was a walking nightmare for the 2-3 years before diagnosed, and I'm finding that I can better deal with conflict and stress the better my therapy goes. I wish you the same!!

[Beckyboo]

I want to apologize for asking a question while everyone is encouraging you. A response to you amazed me. I have a question for Kiralynx. You referred to less hip and back pain. How could this possibly have anything to do with CPAP although I have the same situation. I am only on CPAP 2 months and had a really difficult time getting used to it and difficulty with a mask that was given to me. However, I wake without the constant pain all through my body that I have had for years. Did anyone else ever hear of that? I feel so much better in so many ways so keep working at it. You will be glad you did.

[Kiralynx]

I want to apologize for asking a question while everyone is encouraging you. A response to you amazed me. I have a question for Kiralynx. You referred to less hip and back pain. How could this possibly have anything to do with CPAP although I have the same situation. I am only on CPAP 2 months and had a really difficult time getting used to it and difficulty with a mask that was given to me. However, I wake without the constant pain all through my body that I have had for years. Did anyone else ever hear of that? I feel so much better in so many ways so keep working at it. You will be glad you did.

Becky,

I was referred for my sleep test by a pain management specialist, Dr. Meda Colvin. I was still having gut pain issues beyond the time when I should have healed from my cancer surgery (which pain turned out to be a combination of the tableting agents in the pain pills and the apnea). While I was there for that, I decided, as long as I was there, to ask her about the hip and back pains. The back pain has been an issue since 1982, after a fall. The hip pain began waking me several times a night in 2002, after I lost around 60-75 pounds.

Dr. Colvin said the first thing she was doing was to send me for the sleep test. She said that in her experience, disordered sleep could result in chronic pain. I pointed out that chronic pain could cause disordered sleep, and she said, "Let's see."

The test was positive, and I had the titration -- and I had complex sleep apnea. But within a few days of starting CPAP, I no longer needed the two doses of anti-inflammatories it took to get through the night.

I haven't been able to give up my water therapy, and don't really want to -- it's my chosen exercise, and I do about 6-9 hours a week.

In monitoring my first few weeks data, I realized something very quickly. The apneas and hypopneas and periodic breathing were all appearing in clusters, at several hours into the cycle, and then, after I woke and hit the necessary, again after another interval of several hours, which also corresponded to formerly waking in pain. Apparently, the desaturations caused by the (mostly) hypopneas were causing the pain.

Also interesting is that now that I am on therapy and have gotten the leak rate under control, I've managed to get the levels down (usually between 1 and 2 AHI, with a rare 3). And I no longer have clusters of hypopneas. Just 1 flag here and one there... and I'm mostly sleeping through the night.

Think about it -- your body needs sleep to function properly. If you are not sleeping correctly, your body won't function right and will let you know about it in no uncertain terms. Then if you start sleeping properly, your body says, "Well, finally! She got the message!" and no more pain.

I would, as I have said more than once, been willing to do stranger things than sleep with a mask for this level of pain relief.

[Gerald]

Pammie.......

It has long been my position....that a person's sub-conscious has to be in favor of CPAP therapy....or it's an incredibly tough row to hoe. The fact that you're working on the emotional aspects of this project means that you'll probably do just fine.

As I read your post, I thought of an "off the wall" way to encourage you.

If your life depended on being able to make an all-night trip through 20-miles of deep snow....in a snow storm.....it would be an almost impossible task if you didn't have a snowmobile. But with a good snowmobile, the trip would almost be a pleasure.

One of the great adventures of my life was an all-night snowmobile excursion through some mountains in upstate New York. It was a magical moonlit night.....and I was struck by the thought that the wonderful machine I was riding allowed me to conquer Nature in a way that would have been impossible 50-years earlier. I had experiences that night that I'll treasure till the end of my days....all because of some magnificient engineering that allowed me to ride on top of the snow.

Sleep Apnea is like a deep snowfall that can kill us....if we must make our way through it without mechanical help. A good CPAP machine is like a snowmobile that'll let us fly right through it....and laugh.

My M-Series Auto with AFLEX is like the Bombardier I rode that night....and that's how I look at it. My CPAP machine allows me to cheat the Grim Reaper......as I fly by....."flippin' the bird" as I go.

So, when you get a little discouraged at times, think of the wild guy from Louisiana (yes, LOUISIANA where snow is RARE) screaming by on a Bombardier....with his finger held high.

You can do it!

Gerald

[kteague]

That was some good reading - if I wasn't already sold I would be now! I didn't have that resentment to deal with early on - I was so desperate for help that I'd have slept with a facsimile of a baboon's behind on my face if it would have helped. (Then again, I didn't have to deal with a bed partner.) My sleep was so miserably abnormal there was nothing to grieve the loss of and anything had to be better. Hopefully your spouse will learn and be supportive of you in this. This is one of those times where you've gotta do this for yourself regardless, just would be nice to have him on board. Maybe he'll appreciate it more when he sees you sleeping better and feeling better. There are benefits in this for him too, but especially for you. Hope you feel them soon and that it will temper your disappointment in having to "wear the mask".

[pammieb]

Thank you to everyone for their encouragement. I really feel a lot more positive after reading the responses. And I will reread them when my attitude starts turning negative. Thank you so much! Pam