Seriously need support

[byrd]

I had a sleep study in January (this is June) that confirmed OSA. My doctor recommended CPAP and contacted the DME supplier. The supplier called me and said they would notify me when I should follow up with them to select CPAP machine. They failed to contact me, and I chickened out for a number of reasons (claustrophobia with the mask, bad experience at the sleep study with a painful mask that left marks for three days, and fear that mask straps would damage or pull out what's left of my very thin hair). No one from the sleep clinic explained my results; they simply mailed me a report. I asked for someone to talk to me, and they said they didn't "do that," and to contact my personal physician. I contacted him, and he said he was not qualified to interpret the results. It was all a very bad experience.

I have done enough reading that I think I do understand the risks of untreated OSA, and my daytime sleepiness is becoming overwhelming. But I simply fall apart emotionally when I think about using that machine every night. I tried to talk to my physician about it, and actually started crying so hard that he said, "You don't have to do this." Good grief, I'm 61 years old! Has anyone else had a similar experience and how did you get past it?

[Lucyhere]

bryd... it's a good possibility that the people who can give you the best advice are already sleeping. Your story is not that uncommon, and I'm sure you'll get many responses in the morning.

[Grace~~~]

Hi Byrd ~~~

You can always quit once you've started but you should really give it a try before you quit before you even start.

Does that make sense?

I feel really positive that you can find a mask that does not leave marks on your face.
~~~or pull out your hair.

Do you like aromatherapy?
Maybe you might like the scents that you put on a piece of cotton and breath in to your machine?
(You can pay A LOT of money at spas having similar aromatherapy sessions.)

You don't have to do it for the rest of your life or even for the rest of the month if you get no benefit at all.

...but how will you know if you don't try?

It could be the greatest thing ever for you?
Sometimes life works like that ~~~

... something great around the bend that you can't see until you have the courage to walk down the path a bit ...

...and you'll feel SUPER SMART if you figure out all this new lingo and vocabulary and how to read the charts.
You'll probably decide you want a second career as a sleep specialist.

[egzbuen]

Like you, I did not take it seriously at first. I was diagnosed way back in 2010 with moderate OSA. I couldn't accept sleeping with a machine attached to me.

Fast forward to 2016, symptoms got worse. Brain fog, confusion, sleepiness and lethargism among others, not to mention elevated BP.

Make matters worse, wife couldn't sleep anymore due to my snoring.

Took the test again and I'm now severe OSA. Decided already to use cpap. Test drove several brands for 3 weeks. I though it didn't help. The day after my last night with cpap trial and I immediately saw and felt the difference. Night and day. I felt terrible. I hurriedly purchased a cpap and it took 2 weeks or more to be delivered. I'm on my 2nd day again on cpap and I feel better now.

Don't think twice. You are diagnosed to have OSA. Go get your CPAP.

Good luck.

Sent from hell

[kteague]

... a painful mask that left marks for three days, and fear that mask straps would damage or pull out what's left of my very thin hair... I simply fall apart emotionally when I think about using that machine every night... Good grief, I'm 61 years old! Has anyone else had a similar experience and how did you get past it?

As to the mask marks, there are many masks out there, surely there's a suitable one for you. There are strap covers and mask liners to help with imprints. Wearing some sort of scarf can protect your hair from damage from the headgear. I actually consider my hair when choosing a mask. There's a mask with ear loops that some are able to use without the headgear. Another one attaches to a dental mouthpiece and can be used with no headgear. Probably can't use it if there is delicate upper dental work though. There are options to help make this experience less objectionable.

I was in my mid 50's when I started CPAP over 10 years ago. Wasn't real pleased at all it entails, but was desperate to stop the decline of all aspects of my well being, and was relieved to finally have some answers and a treatment. How did I get past it? Determination. Perseverance. The guidance and support of people here who assured me I could do this. And out of necessity. I could choose to continue barreling toward the grave or do my best to turn things around. Wasn't a hard decision for me. Didn't make me like it any better, but helped me be more solution oriented. It's ok to have an adjustment period. Kick a few rocks then get on with things.

[Gasper62]

I suggest that you find a real sleep doctor with positive patient reviews and make an appointment. You only have to do what you make yourself do. Millions of people are using that machine every night, and they're better off for doing so.

[Cardsfan]

I have covered my mask with soft fabric covers to keep hair from breaking. Look at wwwpadacheek.com. They have all kinds of things to cover the mask and straps and headgear with.
PS, I was 59 when I started. And have not missed one day since. You get used to it, like putting on glasses or contacts.

[chunkyfrog]

I started using cpap in 2010. I just turned 69. I feel so much better than seven years ago.

[Violet West]

I suggest that you find a real sleep doctor with positive patient reviews and make an appointment. You only have to do what you make yourself do. Millions of people are using that machine every night, and they're better off for doing so.

+1

[ChicagoGranny]

But I simply fall apart emotionally when I think about using that machine every night.

Then quit thinking about using CPAP every night.

Don't even think about using it one night. Just prepare to use it one night. Get everything in place - mask, hose, machine, humidifier, distilled water for the humidifier. Then forget it until bedtime.

Just one step at a time. Prepare. Execute. Don't think. I don't.

[Okie bipap]

I was first diagnosed in 1996 at age 52. At that time my job required a lot of travel by air. The cpap machines then were much larger than they are now. I was already carrying a nebulizer when I travel due to asthma. I opted for surgery to correct my sleep apnea due to traveling so much. Two years ago I had knee replacement surgery. While in the hospital, it was noted my blood oxygen was dropping every time I fell asleep. My doctor put me on oxygen at night until I could be tested and started on treatment. When I was tested, I had severe sleep apnea with my blood oxygen dropping to 63% before they put me on oxygen to complete my testing. I have been treated now for one year, and will turn 74 this week. I didn't want the machine, but feel so much better since being on it, I won't give it up now.

[VictorC]

I can understand being emotional about an OSA diagnosis. I was in denial for years, until my wife finally convinced me to get a sleep study. Prior to going on CPAP, I'd fall asleep practically anywhere. When I wasn't napping, I was tired, and my brain was in a serious fog. I had to struggle to remember things, or even to think. I'd drive home in the afternoon or evening, and slap myself in the face every so often to make sure I was staying awake. None of that really registered though. After all I had good days too, and I've always gone through life sleep deprived. So surely I didn't have a problem. Boy was I wrong.

When I went in for my sleep study, I was sure they wouldn't find anything wrong with me. The technician strapped me up to all the sensors, and I absolutely hated that. I remember snapping a selfie of myself all wired up, as a reminder of how miserable I felt at that moment. That was nothing compared to what I felt later when the technician woke me up to place me on CPAP that night. I was angry at myself for allowing myself to get to this point. After all didn't only fat people get OSA? Seriously, I was on the verge of tears brought on by my self loathing at that moment. I was sure that it was all BS, and that I could never adapt to CPAP. That I was ok even with the stupid diagnosis. Boy I was wrong again.

The next morning, I woke up somewhat refreshed which was surprising since I was certain I had hardly slept a wink. In the clarity of that morning I decided that I wanted to learn everything I could about OSA and CPAP. I found this site and it proved immensely helpful. It helped me come to the realization that this is my life now, and that I'd better get used to it. It was and still is a process. Some nights are easier that others. There is a lot of trial and error. I was lucky and adapted fairly easily, though I can't tell you how much money I've spent on pillows over the last year and a half.

I am sharing this to point out that we've all been where you are now. We've been confused and upset. We've made the silly excuses for not using CPAP, and they never felt silly at the time. Only you can decide to use CPAP, but if you do we're all here to support you and help you. There are lots of masks out there. Don't just assume that the mask used during the sleep study is the only one for you, or even the right one for you. Try as many as you can so that you find something that works for you. If your existing pillows are a problem, you might find new ones that work better. You'll experiment with humidity to make yourself more comfortable. There are lots of things you can do to make this a more pleasant experience.

To be more specific to your post, you never mentioned which mask you use, but if claustrophobia is an issue, then you might look at nasal masks or nasal pillows. I started out with a full face mask, but switched pretty quickly to nasal pillows and chin strap as that was more comfortable for me. Maybe something like that will work for you too.

[hazel]

You dealt with an unsatisfactory DME vendor. If you have insurance that will help with the cost of your CPAP equipment, contact your insurance company to find out if you can deal with a different DME company. If so, you can have your prescription transferred to the new company (but check first to be sure they will set you up with a respiratory therapist who can explain your sleep study results and help you obtain equipment that will be comfortable for you) . If you're stuck with the company that didn't give you satisfactory information initially, phone that company again and insist on speaking with a supervisor to explain your dissatisfaction and request help talking with someone who will answer your questions. If you won't have financial help from an insurance company, you can purchase from any vendor so call around til you find a company that agrees to help you understand what the sleep study showed and what kind of equipment is likely to work well for you.
I expected to hate CPAP, but using it makes me feel so much better in so many ways that I'd be horrified now to spend a night without my machine. I hope you'll find the same to be true for you.