Newbie and Compliance

Hi. I am a newbie to the board here and I am just starting to realize just how little I really know about my condition. I am 35 years old.

I have suffered with horrific insomnia for the last 10-12 years. Last year as a last ditch effort, my Dr sent me for a sleep study. It was seemingly uneventful, it was a pain in the butt, but the tech didn't see any real issues. I got a call from my pulmonologist on Friday night at about 7:30pm. (My study was on Wednesday night.) He wanted me to come to the office the next day to talk with me about the results from my study. So, I go and he talks to me, shows me the reports and says I am having between 120-140 incidences/hour. This is why I am not sleeping. I also neve fall into the REM stage of sleep. I rarely get to level 3, never level 4 he said. Okay. I still didn't understand any of this, but okay.

I went for the second half of the sleep study where they actually set you up with the machine. It was hell. I have extreme claustrophobia from a traumatic situation. It took forever just to get the mask close to my face without me hyperventilating. I am sure some of y'all (if not all) have been there, done that.

I had my 1 year appt with my pulmo last month. He reems me for being non-compliant (which I deserved) and reiterates to me how important it is for me to use my machine/mask. I understand the theory, I just haven't been able to get to that point. Since that appt I have used my mask at least part of every night. I am trying, I really am. I don't sleep much regardless. I go to bed around 9pm and I have to be up for work at 3am. So bare minimum, I am in bed for 6 hours/night. It takes me forever to fall asleep, so maybe 5 hours of the time I am in bed I am in some stage of sleep. He wants me to get 8-9 hours/night which is impossible with my daughter and my work schedule.

I am feeling very ignorant right now. I know that I need to use the machine, I know that it will help improve my quality of life. I know these things, but I am having a hard time. I realize now that I need to learn more about this, about the machine and how it works. I need to take control. Maybe that will help me.

Anyway, I wanted to say hello, thank you for being here and I can't wait to learn from you. That is all.

Have you thought about getting a mask that doesn't take up as much facial real estate? Maybe nasal pillows or cannula? I use the Puritan Bennett Breeze and the only part of my face that it touches are my nares. There are a lot of other nasal pillow systems as well, a lot of them have clearer fields of vision. And then there's the Nasal Aire II, which is essentially two tubes across your face, it doesn't interfere with your vision at all. I think if you had less stuff on your face your claustrophobia might be lessened.

Thanks for the reply and suggestions! I started out with the nasal pillows, but they were too hard on my nose. I had sinus surgery 6 months before I was diagnosed with CSA and the pressure of contact with my septum from the pillows was extremely painful. That was when I let the Dr talk me into trying the mask. Maybe I should try them again?

My sinuses have been a chronic issue that has also been difficult to overcome. The tech from the DME company told me not to use my machine when I am sick, so I didn't. The pulmo said for me to use it regardless and just use some vapo steam in my humidifier. I did and now can't get the smell out of my machine. I think I might need to try some of the aromatherapy stuff that I read about on here.

Also, I am using a machine that has a smartcard. Should I be looking at my data? I don't even know how to read it or adjust the settings. No one has shown me anything about it. The tech showed me to click the middle button to turn it on and then to press the buttons on either side once. Then lay down and snooze. That's it. I am feeling very ignorant.

Regina, I had the same reaction to nasal pillows. When I FINALLY tired the Nasal Aire II, under protest, I was FREAKIN' AMAZED how it DID NOT HURT MY NOSE. It's completely counter-intuitive. You're certain a prongs mask will hurt worse, and it doesn't.

But it's the most comfortable mask I've ever tried. If you might want to try it, let me know. I run a free test drive program for this mask, so people can test it out before they buy one. All it costs you is the price of postage to the next person on the list.

Read all about it on my NAII Tip Sheet, in my Sig line below.

Cheers,
Babs

Thanks Babette! I just might take you up on that. I just got my Micro Mirage II mask a month ago and it is going to be another 2 months before I am eligible for a replacement or change with my insurance.

I have to do something. I can't keep up this level of non-functioning. I just need a kick in the pants to do it. KWIM? I am trying to talk my husband into going for a sleep study as well. He snores, horrifically, and I have witnessed him having periods of apnea. He refuses. He won't even discuss it. He is a police officer and the thought of him not being alert while at work terrifies me.

Do whatever you have to do to get through your day. If his snoring disturbs you, and he won't get a sleep study, show him the way to the other bedroom or couch.

Sleep Deprived Cops with Guns.... Hey, do I smell a new Fox reality series????

I just picked my brother up from the airport from an overnight flight from Honolulu. He is trying like hell to get a sleep study, and Kaiser is giving him grief. I promised him I'd hook him up to my mask and machine just so he can get an idea of what it's all about while he's visiting.

I'm convinced our father has sleep apnea, but my mother won't hear of a sleep study for him. She'll take him for daily injections at the hospital, but won't contemplate sleeping with his mask and hose.

Anyway, I told my brother to tell the doc his dad and sister have been diagnosed with sleep apnea, and a few other choice phrases to get himself a sleep study. I told him NOT to mention A) His father has NOT been diagnosed, and B) I'm his stepsister.

Best of luck!
Babs

It is so frustrating, isn't it? My husband, more nights than not, sleeps in our daughter's room and she sleeps with me. She has night terrors and anxiety issues, so having her close to one of us is best for her. Plus this way I don't hear the snoring. heh He does need to go do it though. His father and three of his siblings all have OSA. I can't stand his job to begin with, the thought of him being out there sleep deprived scares the crap out of me.

I hope that your brother is able to get a study done so he too can get some rest!

Babette wrote:I just picked my brother up from the airport from an overnight flight from Honolulu. He is trying like hell to get a sleep study, and Kaiser is giving him grief. I promised him I'd hook him up to my mask and machine just so he can get an idea of what it's all about while he's visiting.

Kaiser is the absolute worst. I went to them asking for a sleep study after my dad died due to complications of sleep apnea and COPD and they sent me home with a pulse oximeter. Apparently my saturation levels weren't low enough to worry them and at the time I blew it off, thinking they knew best. Now I wish I had the results so I could see what they were exactly.

Your brother needs to lie and tell them he's falling asleep at inappropriate times - like when he's driving!

Regina: Maybe your husband will be more receptive after your CPAP experience improves. Once he sees how it's changed your life he might be interested. Him being less alert on the job is pretty bad, but what about the other dangers of OSA too?

Fortomorrow, I agree that the other health risks with untreated OSA are huge and bear looking into. He has already been exhibiting signs and syptoms of issues from OSA. He has high blood pressure, chronic headaches, sleepiness at inappropriate times, depression, etc. It is just that the fear of him not being on 100% at a job like his takes precendence with me. I fear that he is much more likely to be killed or injured from slow reaction time than the effects of the OSA. I want him treated either way. I just want him to get help and feel better. Sooner rather than later.

I also am curious... are there any other CSA people on here? I don't understand this aspect of it at all. I know that it is because my brain is not sending the signal for me to breathe. Does that make my apnea any different though? Apnea is apnea, right?

I am about to head to bed with baby girl.... I am hopeful for a good nights sleep. We shall see!

Thanks so much!

I'm sorry for your struggle with therapy. Your mind and body must be depleted from not getting the recuperative rest it needs.

I remember wanting to cry when the sleep tech put a FF mask on me. I hated the big thing, the feeling like I wouldn't be able to breath (ironically as without it I definitely wasn't breathing correctly), and sad that I'd have to wear a mask for the rest of my life. The tech wrote that I was claustrophobic so that I wouldn't have to use a full face (FF) mask. He understood that some insurance companies will only pay for FF masks and some other experiences he's had with DMEs and sleep docs. Anyway, so I was fitted with a nasal mask, the ComfortGel which is about the same size and architecture as your mask. I was able to embrace it for while and then went on my journey of trying lots of different masks. I found out from my DME that mask manufacturers have a 30 day warranty that allows the DME to give you a mask to try and if it doesn't work out you can return it. Check this out. Anyway, for me, having the mask that was the least invasive was important to me and is what helped me stay on therapy. That and the members on this forum encouraging me and reminding me that my body was going through a life and death struggle every time I would be off therapy.

Also, another consideration is the process of change. If your reasoning knows that you can talk yourself out of using it for a night, then it will do so. Kind of like going on a diet and reasoning why it's OK to have this or that non-diet food. The more we say OK to what we know isn't good for us, the better we get at doing so - anyway that's the way I am and others I know as well. So, it's key to work past that point and use your equipment knowing that if it isn't perfect, you are finding out new information toward finding what you'd like better. It takes time to create the habit of being compliant. Go for it! See how many days you can rack up being compliant and we'll throw an online party when you get to 30 days, 60 days, and 90 days, or whatever milestones you want to set. Each party we'll celebrate that you should live a healthier, happier life on therapy than one that is sleep deprived and potentially life limiting. PM me when you've made your milestones, whatever you decide they are and I'll bring out the virtual cake and goodies : )

Thank you so much Gasp! I really appreciate y'all cheering me on. So far I have almost gotten to 30 days. I am trying hard. I also talked to my husband this afternoon about how important I feel it is for him to do a sleep study. He has agreed (Shocker!) to do it if the Dr thinks it is a good idea. Now to get on the Dr about it. I plan to call him on Monday. I don't forsee a problem with it at all.

I am learning so much by reading here. I didn't sleep well last night, but that wasn't the machine's fault, that was my phone's fault. heh (I got a new phone and stayed up too long playing with it.)

Do any of you still feel the need for naps in the afternoons, or is that something that will go away the more controlled I get? Granted, I don't have the typical daytime routine, but I am usually struggling by about 2pm to keep my eyes open.

ReginaJ wrote:Thank you so much Gasp! I really appreciate y'all cheering me on. So far I have almost gotten to 30 days. I am trying hard. I also talked to my husband this afternoon about how important I feel it is for him to do a sleep study. He has agreed (Shocker!) to do it if the Dr thinks it is a good idea. Now to get on the Dr about it. I plan to call him on Monday. I don't forsee a problem with it at all.

I am learning so much by reading here. I didn't sleep well last night, but that wasn't the machine's fault, that was my phone's fault. heh (I got a new phone and stayed up too long playing with it.)

Do any of you still feel the need for naps in the afternoons, or is that something that will go away the more controlled I get? Granted, I don't have the typical daytime routine, but I am usually struggling by about 2pm to keep my eyes open.

Yeah - almost 30 days. Be sure to let us know. Hope it doesn't happen when I'm working too many hours - but I'll catch up with you if it does.

In my opinion, being sleep deprived for a long time prior to therapy may put your body at constant need for rest until some time has passed and healing has occurred. Sleep deficit can make the hours of the day where our circadian rhythm would slow down the body especially challenging.

gasp wrote:Yeah - almost 30 days. Be sure to let us know. Hope it doesn't happen when I'm working too many hours - but I'll catch up with you if it does.

In my opinion, being sleep deprived for a long time prior to therapy may put your body at constant need for rest until some time has passed and healing has occurred. Sleep deficit can make the hours of the day where our circadian rhythm would slow down the body especially challenging.

Thanks Gasp. I am wondering if my circadian rhythm is just permanently messed up. I went from working graveyard shift to having a baby to having a sick baby completely downhill. I haven't slept well at night since I worked nights. I worked it for several years. I have to take ambien to sleep at all.

I just looked at my handy dandy little datebook on my phone and as long as I continue using it for another 5 days without fail I will have made my first 30 consecutive days in a long time. I am going to make it to that 30. I am determined.

Thanks Gasp! **HUGS**

ReginaJ wrote:

gasp wrote:Yeah - almost 30 days. Be sure to let us know. Hope it doesn't happen when I'm working too many hours - but I'll catch up with you if it does.

In my opinion, being sleep deprived for a long time prior to therapy may put your body at constant need for rest until some time has passed and healing has occurred. Sleep deficit can make the hours of the day where our circadian rhythm would slow down the body especially challenging.

Thanks Gasp. I am wondering if my circadian rhythm is just permanently messed up. I went from working graveyard shift to having a baby to having a sick baby completely downhill. I haven't slept well at night since I worked nights. I worked it for several years. I have to take ambien to sleep at all.

I just looked at my handy dandy little datebook on my phone and as long as I continue using it for another 5 days without fail I will have made my first 30 consecutive days in a long time. I am going to make it to that 30. I am determined.

Thanks Gasp! **HUGS**

I can't believe you even sleep : ))) You've definitely had some challenges to establishing a constant sleep schedule. As I understand, it is very important to go to bed at the same time and get up at the same time. It helps establish the bodies hormone cycles for sleep. Sometimes it's hard to go to sleep if you're not tired so you may stay up later. Then go to bed and sleep later. So, if a person can go to bed at the hour that would give them 8 hours or so sleep by the time they should get up, and get up even if sleepy - sooner or later the body adjusts and the hormones regulate - poof - sleep. At least that's how I understand it's supposed to work : ) But with a baby, and a baby that's sick - impossible.

Is your baby doing better?

You'll make it - yeah!

Regina, did you make 30 days? How are you doing?