Another new user lost in the wilderness

[keynola]

Been lurking in the rafters the past couple of weeks since my diagnosis. Last night was my first night on the CPAP. I know everyone on here has heard it all before, but here's my story. Hopefully writing it out will make me feel better.

Male, turn 38 next Saturday (5/25), 6'2", ~200-205 lbs, single never married. Fairly healthy, never had a broken bone, hospital admittance or anything like that. I have high cholesterol that I'm treating with over the counter stuff (fish oil, niacin). Heart disease runs on both sides of my family, although treatment has gotten much better so no one has died of a massive heart attack since the 80's. I suffer from mild depression, and have taken Lexapro for the past 6 years to cope with that with no (or few since I haven't noticed any yet) side-effects. I run a lot to keep in shape, distance running. In fact, I'll probably go knock out 6-8 miles this afternoon when I finish writing this. Haven't done any marathons yet, but it's on my to-do list. I've done several half-marathons over the past 3 years. If I had to guess, I would say my physical condition and exercise is above- average.

I was having some breathing issues that made me want to find a new primary care doctor in my (relatively) new hometown. It wasn't that I wasn't getting enough air, but rather I wasn't getting a satisfying full breath. I would yawn or burp a lot when this occurred. With my family background, I was worried about heart issues, so he sent me to a cardiologist first. The cardiologist did a full-chest x-ray, EKG, ultrasound, etc... Showed a perfectly healthy heart. He also prescribed a sleep-study, which I wasn't too excited about because I'm pretty uptight about my sleeping. The only time anyone ever mentioned to me I stopped breathing while sleeping was while skiing in Colorado at a high-altitude, where I usually have trouble adjusting anyway. No one else ever mentioned it, and while I do snore occasionally, it seemed mostly when I was sleeping on my back. It wasn't earth-shattering snoring.

Obviously the sleep-study showed some apnea or I wouldn't be here. I was truly shocked. The doctor said I averaged 15 AHI's an hour, with a max of 22 AHI's. He then proceeded to calculate out ~160-170 AHI’s a night based on 8 hrs sleep using the max number, which still kind of irritates me. Regardless, the diagnosis was mild-to-moderate sleep apnea. I put off doing the titration study and getting the machine as long as I could. Part of it was making appointments based on my busy schedule; the other part was just wanting to put it off. I have never really had trouble staying awake in the daytime. I usually have plenty of energy. In fact, I feel worse today after wearing the mask and sleeping ~9 hrs than I usually do.

I’ve been in denial, and still am. I’m been working to lose 10 lbs since the doctor said that might help, but after reading some of the posts here I’m thinking that will be a long-shot. I could probably deal with losing a few pounds, but I’m not too far from where I need to be at my height. I wonder about the alternatives: mouthpiece, or the nasal plugs (Provent) or surgery. I’m an licensed operator at nuclear facility, so I have to notify them of this medical condition. They will make usage of it a condition of keeping my license, which on one level I understand. But I find it extremely frustrating since I have NEVER worked impaired and I have gotten the doctor to state my sleep apnea treatment is for long-term health, not current functionality. I feel trapped by this, like my livelihood depends on my compliance.

All in all, this has me very depressed. I don’t deal well with change, and my psychological well-being from a young age has been tied to my sleep. I am anxious when sleeping someplace new. If I can’t sleep, I tend to spiral down into depressing thoughts regarding my singleness, my aging parents, being alone, etc… I slept ok on the machine last night, but today I have felt like crying. I know it is irrational, but I wonder who will ever marry someone that has to sleep like this? I see from the posts on the board I’m not the first one to feel this way, and I am sorry for being so long-winded. But it’s the first time I’VE felt this way, so I would appreciate any tips you could give. If I need to be on it, I want it to work because it’s for my overall well-being. But God knows I don’t want this and it’s making me so sad.

[Suzannaor]

Well, I am new to this condition, too, and I understand perfectly what you are saying. I DO NOT like this new contraption in my life! Don't have anything to offer, other than support! It looks like a lot of great people here who will help us learn to live with this. Best of luck! Bet ya even feel better now, having put it all out there in black and white!! LOL

[Stormynights]

I know it is irrational, but I wonder who will ever marry someone that has to sleep like this? Someone who loves you.

It is sad that you have this hanging in your work record but you are not lost in the wilderness anymore. Getting used to a machine and wearing a mask isn't easy but once you figure it out you won't be able to sleep without it. I dragged my poor husband kicking and screaming to a sleep study. He got his machine and I bitched and whined and nagged until he got used to wearing it. I did that because I love him and want to keep him around as long as possible.

Thankfully you found out about this while you are young. It will be easier to adapt now than when you are a cranky old fart too set in your ways with a lot of health problems.

[HoseCrusher]

You are doing fine. You just need a small adjustment to your thinking.

Your perspective began as thinking that you are in good shape and seem to function well during the day so there should be no concern with your functioning during sleeping. Now you have been informed that you have some "issues" while sleeping. Those issues can cause major health concerns down the road so it is better to take care of them right now.

I am trying to come up with an example but the first thing that jumped into my mind was liver damage caused by drinking too much alcohol. If you found out that your liver was beginning to show problems, you would find a way to cut down or eliminate alcohol. The problem with this example is that eliminating something takes care of the problem. I suppose that if you eliminated sleeping that would eliminate the problem with sleep disordered breathing, but it would probably cause other problems... and, who would marry someone that never sleeps.

You need to re-frame all of this as a great adventure.

If you have ever traveled somewhere that is quite different from where you live, you already have some of the tools you need to adjust. Time zones can be difficult to adjust to, eating habits frequently get disrupted, strange locations strange beds and noisy neighbors can all require adjustments to what you hold as normal at home.

xPAP use is kind of like going on a trip to an exotic location. Just like you mask up prior to diving underwater, with xPAP you mask up prior to sleeping.

While it is not the same I think you kind of get the idea behind this.

Here is an exercise that can help you put your depression into perspective.

Grab a pen and pad of paper and go into the bathroom. Shut the lights off and light a small candle or use a small flashlight that will only give you enough light to see to write by. Stand and look at the toilet. Hunch your shoulders forward and bend over slightly. Hang your head slightly. Now write down everything that is "bad" in your life. It is OK to cry while doing this. Set a timer for 10 minutes and stop when the timer goes off.

Next turn to the next page in your pad of paper and go outside. Stand erect with head held high and shoulders back. Put a smile on your face. Take a deep breath and stretch to your full height. Look at the sky and trees and bushes. Feel the wind and soak up the sun. Now write down everything that is "right" with your life. No timer is needed as it may take a couple of hours to get it all down.

After all of this glance at your "bad in life" list and pick one thing to start working on. Come up with a plan for tomorrow to address this issue and when tomorrow comes follow your plan. Eventually you will find that you will be able to work through most of your list.

As far as wondering who would marry you goes you would be surprised at what a little creativity does to make using xPAP a non issue. My wife tells me I look "sexy" in my mask. She says that because she is looking at the benefits that it provides and knows that I will live longer if I use it regularly. When I roll over and she gets a blast of air from my vent it sometimes turns into an "opportunistic" moment... There is nothing like having the mask ripped from your face followed by intense mouth to mouth... Oops, perhaps that is a little too much information so I'll shut up for now.

Getting back on track remember that every journey begins with a step and you have already taken the first step. Lift your head up, square your shoulders and be prepared to enjoy your journey to wonderful sleep breathing.

[RandyJ]

Can you add your equipment to your profile so that we can help you to make sure your therapy is optimized, if possible?

We've all experienced denial. No one wants this therapy, but most make their peace with it and are grateful for it. Everyone reacts differently on an emotional level to a diagnosis of OSA, but if a brief pity party turns into something more it will need to be addressed. Your apnea may not be severe, and you seem to be in excellent condition otherwise, so give yourself a bit of time with the therapy to see if you perceive an emotional benefit from sleeping better. Lexapro is an SSRI and while all drugs of that category have an effect on sleep architecture with decreased time in REM sleep, other members here report having no issues while on an SSRI. If you haven't done so you should request copies of your sleep studies; the titration especially will show how long you slept in each phase while using cpap.

Don't worry about cpap and dating for now. As others have said, it won't matter to the right person, especially not to someone you deem worthy of becoming your partner.

And the years it may add to your life will be worth it.

[Portlandguy]

I'm sure anyone who really cares about you would accept that you have to use a c-pap. You might even meet someone who uses one themselves!

[NateS]

keynola,

When I met my girlfriend, I had no idea I had sleep apnea and the subject never came up during our dinner dates, picnics, etc.

Later, when we began spending the night together, she expressed concern about my stopping breathing for long intervals, and her debating whether she should shake me, administer CPR and/or call 911. I told her that my ex-wife would sometimes complain that I snored and so I sometimes moved to another room. Her reply was "Well I'm not your ex-wife and that's no solution! I want you right here next to me, and I don't want to wake up some morning and find you dead!"

She begged, cajoled and pleaded with me to get a sleep study done, and when I was diagnosed with sleep apnea, she refused to accept my excuses for not following through with getting set up with my machine and using it every night.

And so I do, and now we have been together for some years.

Take heart, my friend - that's true love!

Regards, Nate

[caffeinatedcfo]

As said above, we have all gone through the initial phases of denial, even anger myself. I pushed off the titration study to consult surgical and other options. I found comfort here and realized I wasn't as alone as I felt. I have been under the hose for a little over a month now and have acclimated to it well. Mostly about finding the right mask for comfort at first.

Stay strong and we will get you through this.

[grapeshly]

Hiya. When I was 38 I would've classified myself just like you: very slightly overweight but I could probably lose it if I had to, and sure, I snored, but didn't everyone? 15 years later my weight had ballooned, I just could never seem to lose it, and I slowly got more and more exhausted, irritable, and was so tired that I could never move. By the time I had my diagnosis I had an AHI of 99 and my blood oxygen would desaturate as low as 65%. More and more I would wake up with terrible headaches, which now I know was due to my oxygen levels getting low. My blood sugar was slowly climbing and I was verging on becoming a diabetic. You see,sleep apnea doesn't get better. It creates a vicious cycle as you sleep less, and your biological systems take a bigger and bigger beating, which leads to worsening problems. At this point my "Darth Vader" machine was a godsend.

Whether my body ever recovers from the damage is a whole other question. My father is very likely suffering from this same ailment, but he's too stubborn to listen. But he, too, is very overweight, is a diabetic, has heart trouble, and suffers from GERD, another typical symptom. Well that will be me, if I were to try and live on without my A-Pap. If you have heart trouble leaving your apnea untreated will make it worse.

It was my dentist who recommended a sleep study, and I think he did so perhaps to get more business. But even he pointed out that by far the most effective treatment is an x-pap machine. He said an oral appliance required a lot of fitting sessions to get it to work right, and he said that the literature he had reviewed about oral surgeries indicated that it could easily lead to other complications (including trouble swallowing.) Ugh.

So, are you going to compromise your future health because of nighttime vanity? Not all women are so shallow that they'll throw you over because of an appliance you wear at night for your health. (Besides, if your apnea is so mild, you surely could pack the machine away for one night - should you "get lucky", as they say.)

[keynola]

Thanks for the kind comments. I especially got a smile out of stormy's reply.

I'm still figuring out the acronyms and lingo, but here's what I know so far regarding my equipment.

ResMed S9 Elite (I think) - not with Autoset, just a constant 11 cm pressure with a 45 min ramp from 5 cm pressure.
The typical ResMed humidifier, H5i
Mirage Quattro mask - full face.

2nd night: Went to sleep last night at 9:00, got up at 5:30. Fell asleep relatively easily, woke up at 11:30 and 01:15. At 01:15 went to the bathroom and when I go back felt like I was breathing liquid air due to the humidity. I had turned the humidification up to 5.5 (out of max of 6), but turned it back to 5.0 and that seemed to help. Still homing in on the right setting for humidity. Had a tough time getting a seal at 01:15. Felt like the mask was on crooked and fiddled with it for several minutes. Got frustrated and took it off, then tried again after 5 minutes. Finally got the leakage under control and slept until 5:30.

My sense of fatigue and the leakage issue are my primary concerns right now. My sleep was ok, although I don't recall dreaming much (I usually dream a good bit, indicating to me I was getting at least a moderate amount of REM sleep). I am VERY tired this morning, feel like I'm walking around in a daze. Actually left my wallet at home and had to turn around to get it. I guess this may be one of the problems of being a mild to moderate case is that you don't notice any improvement at first, but rather a turn in the other direction. How long should I give the mask regarding leakage before I start looking for another?

Thanks again for the replies. It is so helpful to know I'm not alone in this.

[RandyJ]

You can download your data from the SD card using either Sleepyhead (PC or Mac) or ResScan (PC only). See Pugsy's signature for links to the software. By looking at leak graphs and events you can check if your therapy is optimal or needs tweaking.

I started out with your mask and I found that Padacheek's mask liners really helped with getting leaks under control. (http://www.padacheek.com)

You can post screenshots of your graphs here if you want help with analysis.

You can also go to your profile under "user control panel" and add your equipment so it will display with every post you make. That way people can see at a glance what you're using which makes it easier to help.

[Sheffey]

- very depressed.
- I don’t deal well with change, and my psychological well-being from a young age has been tied to my sleep.
- I am anxious when sleeping someplace new.
- felt like crying
- making me so sad

My understanding is that all of this is a direct result of untreated sleep apnea. Sleep deprivation has been used to "break" prisoners of war for centuries. In addition, with sleep apnea, your body is streaming with excess cortisol (fight-or-flight hormones). This is a pefect forumula for high anxiety, worry and depression.

The good news is that CPAP can cure all of this. It may take some time, but if you establish a regular CPAP routine and use the software to get a good therapy, you will become whole and confidence will come into your life.

I have experienced some of what you are going through and it has been gone for a very long time now due to CPAP.

Instead of being sad about CPAP, be thrilled that you are diagnosed and prescribed and can build a new exciting life which was not possible otherwise.

[Stormynights]

I think that the fact that you got through the second night as well as you did shows you are doing good. I know it doesn't seem that way to you though. Adapting isn't easy. A straight cap pressure of 11 isn't easy to start with but it is what you need. Each night will be a little easier until you get comfortable. Once you get comfortable then you can worry about your other concerns.

Getting the software and posting your data will also help. You can get plenty of help here on analyzing your data and getting any leaks in control.

[keynola]

Thanks again for the kind comments. I'm doing the best I can with it, although I have been VERY tired today. The whole thing is making me very anxious. Knowing it gets better and I'm not alone is the key. Thanks to everyone for communicating with and encouraging me.

I don't have a smart-card reader for my computer, so it'll probably be a couple more days before I can upload my data. I'm also working on getting a copy of my original sleep studies. I'm traveling for vaction (5 days in Oregon) starting this Wednesday, but may have some more time to spend on all of this then. I'll be taking my CPAP with me, which definitely wasn't according to the original plan!

Thanks again...

[RandyJ]

I'll be taking my CPAP with me, which definitely wasn't according to the original plan!

Don't forget to empty your water chamber before packing your humidifier, and don't forget to pack the power brick/supply! (I have done the latter, and many have done the former, at one time or another...)