Starting CPAP Tomorrow

[Admiral_Schmidlap]

Hi,
I was diagnosed with Sleep Apnea over ten years ago and went on CPAP very briefly before just giving up. i just could not tolerate the thought of having to wear a mask every night for the rest of my life to just sleep. I was very stubborn back then but there were other issues as well. I was laid off from my job at the age of 36 and decided to go back to school full time to get my four year degree. I started school full time and worked part time 20 to 30 hours a week during the school semester and full time (40 hours/week) during summer. I lived in a small studio apartment where I had constant issues with cockroaches and mice. So all in all, I was not giving myself much of a chance to succeed with CPAP.
So here I am 10 years later and some things have improved while some others have become worse. I have a good paying job and am in a much better place now in terms of living conditions, finances, etc...I have no social life to speak of however, I have not been on a date in over 8 years. I live alone in a 1 bedroom apartment and feel more and more isolated as time goes by. My health is also suffering. I am diabetic (type II) and very overweight. I also have kidney stones.
About 4 or 5 years ago I started having what I believed were panic attacks at the thought of going to sleep. It was not a sudden onset but more of a gradual thing. I eventually started having dreams where I would be trapped in a small room or elevator or a coffin. I became fearful that I was going to be buried alive. I sought help from a counselor and eventually got over that fear but my sleeping was still bad. I have woken up several times gasping for air and on a few occasions when I wake up I have seen very large, dangerous looking black spiders. I eventually found out that these were hypnogogic hallucinations. I started going to bed later and later. I now go to bed at 3:00 a.m. and usually get up at 8:00 a.m. I usually read for about an hour before turning off the lights. I am very fortunate in that I work from home because I do not know how I would survive if I had to get up at 6:30 a.m. every morning to get to work by 8:00 a.m. I do seem to sleep later on the weekends, I usually do not get out of bed until 10:30 a.m. to 11:00 a.m.
Despite my poor health and lack of a social life I am not a sad or depressed person, I am a hopeful person and see myself getting healty and fit one day and actually dating. So with that in mind I started researching Sleep Apnea solutions again. I found a sleep lab here that lets you come in when you normally go to sleep and lets you stay as long as you need to when you wake up in the morning. They also had an amazing shower! Very helpful to get that gook off they use to attach the electotrodes. I had the sleep study done about 3 weeks ago and it actually went very well. I was told that I slept for almost 5 hours. The results showed that I have more hypopneas than apneas but I was having 70 events per hour.
I am now scheduled for a mask fitting tomorrow morning and will go home with my new CPAP machine which means tomorrow night I will be sleeping with some kind of mask on my face. The reality of that has started to bring back some of those old feelings of hopelessness and claustrophobia. I know on an intellectual level that those feelings are caused by irrational fears but that realization does not seem to help. It kind of comes in waves, one moment I will be feeling fearful, and another moment I look on it as a challenge to be overcome and not something to be afaraid of.

I have read alot of success stories here and a few sad ones as well. I do not know what will happen in the next few months but would appreciate any advice that anyone has to offer.

Thanks for reading.

[archangle]

Welcome. Have you read enough here to avoid getting screwed by being given the wrong CPAP machine? Check the links in my signature line or there's a good chance you'll get screwed by the person selling you your CPAP machine.

[jzap]

I just started CPAP a few months ago.

It is still very fresh in my mind the feelings that I had the first few nights. The hardest part was just laying there for an hour or more wishing I could go to sleep, but with the mask as a distraction, I just couldn't drop off like I did before. It takes some effort to get comfortable with the mask, but it is worth the effort.

Before too long, I could drop off in a short while, 20 minutes or so. Eventually I got to the point that I would wake up thinking that the machine wasn't working, but with a little push on the corner of the mask, a blast of air confirmed that it was.

Look at this as the first step toward a better life. Once you get CPAP working for you, then attack one thing at a time, diet, then exercise, and then...

Good luck. I wish you well.

[ughwhatname]

Welcome to the board. I'm a newbie, having been on APAP for about two months.

If I could give you any advice, it would to stop thinking about CPAP usage as a life sentence, and just take one day at a time. Its only been a couple of months, and its second nature to me, and doesn't bother me much at all. I've currently got a head cold so I have struggled with using the mask successfully, and coughing fits have thrown off my data, but I persevere.

I have found so many benefits to treating my severe apnea so far. I was struggling with depression which I thought was related to a death in the family. I couldn't seem to shake it though. Then, I was waking in a sweat, which I thought might be very early peri-menopause. I had edema in my lower legs, and a variety of other issues which have improved with treatment.

I hope you find some benefits very soon which encourage you in continuing your treatment.

[Admiral_Schmidlap]

Hi,
Thanks for the replies and the words of encouragement. I am looking forward to sharing my story with everyone over the next few months.

archangel, I have a few questions for you if you do not mind.

#1) I am recieving all of my CPAP supplies through my Sleep Doctors office. Is this a good idea or not?
#2) I was told that I have to pay $50.00 a month for the next 6 months. I have met my deductible and out of pocket for the year and everything is now being paid at 100%. Does this sound right to you?
#3) Do I have to accept the machine they give me?
#3) Can I return the machine after a period of time has passed?
#4) I have an HSA plan. If I have the financial means to purchase a top of the line machine outright would that make sense? I will eventually reimburse myself through the HSA.

Thanks very much for your help!

[kteague]

Welcome. I too once struggled with using my CPAP and even quit for a bit. Getting on track with my CPAP treatment was my first step toward getting my life back. At some point my fear of suffocating in my sleep outweighed any claustrophobia or dread. The mask and the air became a source of security and comfort. My bad dreams about dying in all sorts of horrific manners completely stopped. My waking up choking and gasping for air with a racing heart stopped. All of these things made me embrace using a CPAP more than if I'd never had bad symptoms. I am grateful that OSA can be treated by - - - AIR! Hopefully you too will soon be able to embrace the very thing that you are now unsure about.

[shaunas]

Make sure you get a machine that is data capable. Some machines just record compliancy hours. By getting a data capable machine, you can monitor your sleep on your own. I wish you the best. I am one of the fortunate ones who was so excited to get a machine that I put on the mask and have never looked back. I never think twice about putting it on at night.

[kaiasgram]

Starting CPAP on Christmas Eve, that's cool Admiral! Good gift to give yourself -- the gift of health. My advice would be that you recognize that you are in control of this therapy, the machine is not in control of you. Fear comes from the perception -- or the memory -- of something threatening and more powerful than you. So be mindful of the fact that this is your choice. When you get home with the machine, practice breathing with it for a bit -- take breaks if needed and then choose to try it again. If you feel at least a little familiar with it before you turn into bed the first time I think it could really help ease the anxiety.

And as others have said, make sure you get a fully data capable machine which will allow you to stay in charge of your therapy. Good luck, let us know how it's going!

[Starlette]

Hello Admiral.

Welcome to the forum. Great group of folks here to learn from. We all learn from one another. Ask questions. There is someone here to offer advice on that particular situation. I find it VERY frightening had I not found this forum, I would still be on a brick (I'm sure Archangle will explain what that is) at 8 cm.
I am very very grateful to many on this forum who have helped me along the way.

One item I would like to comment on is the word "hypnogogic hallucinations". I had to look that term up. I never new there was a term for it. I have those from time to time also. I've always called them "twilight sleep" due to never knowing if you were awake or asleep. One thing for sure, it is indeed very frightening to go through.

Again, I welcome you to the forum. I have prepared some freshly made cookies and a tall glass of milk for you as you read and learn

Starlette

[eeckel]

Welcome to the forum Admiral, reading threads and posting questions on this forum got me through the adjustment period.

You said that you would be getting your equipment through your sleep doc? Does your sleep doc have a conflict of interest in diagnosing you and then selling you equipment? I don't know the rules and regs, but it feels wrong to have one person prescribe and then make profit by selling equipment.

[archangle]

Hi,
Thanks for the replies and the words of encouragement. I am looking forward to sharing my story with everyone over the next few months.

archangel, I have a few questions for you if you do not mind.

#1) I am recieving all of my CPAP supplies through my Sleep Doctors office. Is this a good idea or not?
#2) I was told that I have to pay $50.00 a month for the next 6 months. I have met my deductible and out of pocket for the year and everything is now being paid at 100%. Does this sound right to you?
#3) Do I have to accept the machine they give me?
#3) Can I return the machine after a period of time has passed?
#4) I have an HSA plan. If I have the financial means to purchase a top of the line machine outright would that make sense? I will eventually reimburse myself through the HSA.

Thanks very much for your help!

1) You can buy the machine from any DME who is in your insurance plan. I'm not that familiar with HSA, but there may be "in network" providers who can only charge you a specific amount of money for the machine. Do not let the connection with your doctor make you get the wrong machine.

You're probably not technically buying from your doctor, but from an "affiliated" DME. (CPAP salesman)

There is something potentially shady about your doctor selling the machine to you. I think Medicare doesn't allow this at all. Whether your particular doctor is shady is hard to tell. If they want to sell you a dataless CPAP, I say they're shady.

Let me give you an extreme example. Glasses from my eye doctor were $700 for just the glasses (Not including Exam). Similar glasses from zenni.com - $70. I like my eye doctor and think he gives good service. I don't like him $630 worth, though.

3) You have the option to walk out and shop from another local DME.

Returns are iffy. I can't tell you for sure.

4) Even if I had to pay out of pocket without HSA, I'd get a PRS1 Auto or an S9 AutoSet. You can get them online for less than $1100 or so. Compared to the cost of doctor visits to try to get CPAP right with the wrong machine over the years you'll be using it, that's nothing.

I think people have been successful using HSA to buy online, but I can't say for sure.


BTW, good luck, let us know how it goes, and Merry Christmas.

[chunkyfrog]

My FSA is PayFlex, which has covered everything I've gotten from Cpap.com.
If your HSA is a tax-exempt fund you pay into, you can check limitations on your fund's manager's website.
Unless it is employer funded, I doubt there is any "out of network"

[grapeshly]

If by HSA you mean health savings account, then the rules on what you can use that for are governed by the IRS (Internal Revenue Service), not your employer. I finally found some guidelines, which in general is just about anything you could deduct as a health expense on your income tax for, as described in IRS publication 502. I have used my HSA to pay for whatever my health insurance didn't cover -- which seemed to be about half the costs of the machine and related paraphernalia.

http://www.irs.gov/publications/p969/ar02.html

I've been on my CPAP now for three months, and it has been so beneficial, that if I had to, I'd gladly pay out of my own pocket for it.