Hi, I'm new and want to give up

[debtheveg]

Hello everyone,

This is my first time here, but have been reading all the subjects over the last couple of months. They've been a great help. I was diagnosed with sleep apnea a few months ago. I was completely in shock. I thought I had insomnia and have had a hard time sleeping for many, many years. I've said for a long time, that I wake feeling more tired than when I go to bed.

To try and sleep better, over the last couple of years I've been to a hypnotherapist, a naturapath/herbalist, had several months of acupuncture, learnt Buddhist meditation, bought a new mattress and tried many pillows, etc. Finally I mentioned poor sleeping to my GP and she sent me to a sleep specialist and then had a sleep study done. I was found to have moderate OSA. Then I had a night in a sleep lab to be fitted with a mask (nasal pillows) and get a setting for the machine (11). That first morning after the sleep lab, I felt so clear-headed - but it didn't last. I went straight out and rented a machine, which is how it's done here in Canberra, Australia. You rent for two months and then need to decide to go ahead and the rental price comes off the sale price of a new machine.

I was very motivated and optimistic after feeling so good for several hours. However, since then (nearly two months) I have actually felt worse every morning. I seem to be constantly aware of the hose, which I have running under the covers, and as I'm normally a stomach sleeper, am having a really hard time trying to sleep on my back or sides.

On top of all this, my husband doesn't believe I have OSA as he says I don't snore and he's never heard me stop breathing. We've been married 33 years, so he should be aware if I snore!

I really hate the whole thing. I feel horrid whether I use the machine or not, so a week ago I packed it all up and don't want anything more to do with it. The sleep specialist recommended having both a CPAP and a dental thingy to keep my jaw forward. I'm thinking I may give that a try but I don't see the specialist for another month or so.

Has anybody had success with the dental thingy?

Any comments would be much appreciated.

Thanks, Deb

[boston]

Im new at this also, and Ive wanted to throw that #$%^& machine out the window a few times (actually threw my mask once.)
I finally got a different mask and it helped sooooooo much.
Are you having problems with leaks, dry mouth, rain out, etc.
I just switched to nasal pillows and it made a HUGE difference for me, but you may need a full face mask, nasal mask, or nasal prongs.
What kind of mask did you use during your sleep study??
Ive been on this for 23 nights now and am just this week starting to feel better, and I know its the mask I switched to, and Ive only used it for 5 nights now.
I know it can be frustrating as all heck, but try to have a positive attitude and stick with it.
And for your hose, do you have a cover for it? You may not notice it as much then, or find another way to route it.
I have mine on a night stand and the hose runs over my headboard (with a fleece like cover on it), and I barely notice it.
Im sure a few more people will post and give you some help and pointers,
GOOD LUCK with it all.

[Paul56]

I was diagnosed with sleep apnea a few months ago. I was completely in shock.

That is a reasonable reaction. When I was diagnosed I was in denial for a while.

Finally I mentioned poor sleeping to my GP and she sent me to a sleep specialist and then had a sleep study done. I was found to have moderate OSA.

Ask your GP for a copy of your sleep study...

I have actually felt worse every morning. I seem to be constantly aware of the hose, which I have running under the covers, and as I'm normally a stomach sleeper, am having a really hard time trying to sleep on my back or sides.

I tried the hose under the covers for a while and found that far too much fussing. Now I have the hose coming in from overhead by running behind and up and over the headboard. Much better... no fussing.

Do you have a "fully data capable" machine? Is someone viewing the results? The nightly results from a "fully data capable" machine need to be viewed to determine how effective the therapy is... otherwise no one knows what is going on. Reading that data could provide clues as to why you are not feeling better.

On top of all this, my husband doesn't believe I have OSA as he says I don't snore and he's never heard me stop breathing. We've been married 33 years, so he should be aware if I snore!

Once you have a copy of your sleep study sit down with your husband to review it.

Don't give up on it just yet. Many have a hard time when getting started while others seem to slip very easily into the therapy.

You might want to update your profile to indicate the machine type and mask you are using.

[echo]

Ditto to what everyone else said.

One other thing to mention is that many people don't actually snore, don't fit the "typical OSA" profile (overweight, older, male, etc) , and yet they STILL have OSA. So it's important to get a copy of your PSG - you cannot diagnose OSA just by snoring.

As for the insomnia - I can relate!! The worse my OSA is the worse my insomnia is!! For the first time in years, I can actually fall asleep at night, now that I've started therapy.

The best suggestion so far is to get a data capable machine + the software / card reader so that you can track your progress. It's a bit like shooting in the dark if you only go by how you feel.

Welcome to the forum, good luck, and DON"T GIVE UP!! The complications of OSA are much worse than insomnia... heart disease, high blood pressure, diabetes, reduced quality (and duration) of life...!!

Edit: if you've had OSA for a while, the damage has certainly been building up. If you don't feel better right away, it's because your body needs some time to recuperate, but it will come in time. Again I'll stress the importance of the software and data capable machine: many of us find that the pressure they give us from the titration is NOT the actual pressure we end up needing - and the machine+software can help you make sure that you're not having any events anymore, that leaks are under control, etc.

[kteague]

Getting on an even keel with cpap treatment can take time and effort. There is much to be gained by persevering, and much to be lost by not. Ditto to what the others said about your husband seeing your results in black and white. If you didn't snore and were breathing quietly, there would be little for him to notice when you stopped. The main thing that makes many cases of apnea so obvious to the observer is when there's a marked contrast between the noise and the silence.

It is not unusual to feel worse before feeling better during the adjustment period. But do consider that there may be other contributing factors. Could your sleep be shallow for other reasons and making you more aware of the equipment? Are you on any meds that are known to disrupt sleep? Did your study say anything about limb movements? Have you been evaluated for other medical conditions that make one tired?

I didn't check to see which type machine you are using, but monitoring your data on an autopap could discern if maybe your pressure needs when sleeping at home are different from the hours in the sleep lab. I started off with a pressure of 10 but it turned out I need a 12. Also, there are those occasional times that others have reported when machine settings were not set up properly.

Haven't considered an oral device since I'm prone to TMJ pain and my sleep apnea is not mild enough to possibly benefit from it. Just from what I've read, the success rates are best with mild OSA, and the statistics decline with moderate. Whether one tries it to see if they are one who is helped could be a matter of weighing the statistics vs the expense. Just from the outside looking in, if the oral device was recommended to accompany cpap and not replace it, I'd first go thru the suggestions to optimize the cpap treatment to avoid adding another aggravation when my sleep is already poor. Having 2 things going on could muddy the waters on troubleshooting.

I would be in a world of trouble if I had to change my lifetime sleeping style (side sleeper) to accomodate a mask. That would be another source of insomnia for me. I think ALL new cpap patients should have that factored in when given their first mask, but that's a pipe dream. For what it's worth, some stomach sleepers on here have made this work for them by using pillows that accomodate the mask or by going with a mask with features that seem to work in that position, like the Headrest, especially if deconstructed. And routing the hose overhead can eliminate another aggravation. I know - it's a lot to be bothered with at a time when the energy is low. I probably would have given up (and did quit for a while) if it had not been for the hope I received from folks here that I really could make this work.

Let us know how things unfold for for you.

[alnhwrd]

Deb,

Unpack that CPAP and get hooked back up to it tonight. You have been diagnosed with a serious medical condition, that left untreated can cause a heart attack or stroke, or other problems. The good news is it is very treatable, and you have the means to do so, so do it. Your husband saying that he doesn't think you have OSA because he doesn't hear you snore is like seeing a diabetic eat a piece of candy and saying they must not really be diabetic. Snoring is one possible symptom, but as others have stated not everyone manifests it. If your sleep study showed you have moderate OSA (Moderate means you are have episodes where you stop or greatly reduce your breathing 30-50 times a night), you NEED to be treated for it, and CPAP is the gold standard of medical treatment for this condition.

Successful CPAP therapy is a process for most people. Some are blessed with finding the right pressure right away, get the perfect mask the first time, and sleep great from then on. For most, there are obstacles, often more than one, to over come. But in time and with some determination almost anyone can become adjusted to this treatment.

First and foremost, you absolutely must have a machine that is capable of providing you with, at a minimum, your nightly average pressure, leak rate, Apopnea Index (AI, the number of times you stop breathing) Hypopnea Index (HI, # of times your breathing is significantly reduced) and AHI, which is simply AI plus HI added together. Without this information, it is very diffcult to know what is causing you not to feel good. You could be leaking, either out of your mouth or out of your mask. You might not be getting enough pressure to resolve your apneas. A change in humidity might help, or just stringing your hose overhead might make the difference. I strongly recommend that you fill in your profile with your machine and mask type, as this will help others give helpful, intelligent recommendations.

Here are some links you might find useful, including one on the dental device:

viewtopic.php?t=2836

our-collective-cpap-wisdom/31/Help-For- ... Users.html

While CPAP is struggle at first, and I can certainly understand why you have "packed it in", remember that most everyone here has had the same or similar problems and has overcome them. But in time, you get comfortable with it, it becomes part of your regular routine, and you cannot imagine what it would be like without it. I still have good and bad nights, but at least I have good nights now, not like before CPAP. Yesterday was a very good day, low numbers, slept enough, had energy all through work, and got to bed early. Determine in your own mind that you will make it work and you will succeed. Best of luck to you.

[Allan-Dallas]

Im new at this also, and Ive wanted to throw that #$%^& machine out the window a few times (actually threw my mask once.)
I finally got a different mask and it helped sooooooo much.
Ive been on this for 23 nights now and am just this week starting to feel better, and I know its the mask I switched to, and Ive only used it for 5 nights now.

Congrats. 1 year into CCRAP and still on my quest for a good nites sleep. Regarding your mask... do you route the hose up the middle of your face as shown in the product picture? Thanks.

[debtheveg]

Hi again,

Thanks to everyone who've replied. I know this is a serious condition but I just feel so annoyed that I have to deal with it. If I had received instant benefits from using the machine I would feel far more motivated, but actually feeling worse seems like such a waste of time and effort.

I have the sleep study results from both the first time I was wired up which resulted in the diagnosis of moderate OSA and then the results from the night I was in the sleep lab to be fitted for the mask (Swift LT) and to have the setting determined on the machine (11). So, yes, my husband can see in black and white that I've been diagnosed, but he's hasn't seen or heard any evidence of it by sleeping with me. I showed him some youtube footage of some poor sleep apnea patients which was pretty shocking.

I have to make a decision, probably this week, when I return the rental machine, whether to go ahead and buy one. Thanks for your help.

Deb

[congahands]

Again, please understand that you don't need to snore, to have apnea, and snoring doesn't prove apnea. Your husband sounds like he is mis-informed. The study shows that you stop breathing several times each hour. This is dangerous.

How would you feel if you were diabetic? Would you be annoyed about having to take blood samples from your fingers 3 times a day? Would you be annoyed and quit because you hate needles and giving yourself injections. The insulin doesn't make an instant improvment either. But I bet you'd still keep at it.

I don't know if that helps or not. But it's how I look at it.

[boston]

Im new at this also, and Ive wanted to throw that #$%^& machine out the window a few times (actually threw my mask once.)
I finally got a different mask and it helped sooooooo much.
Ive been on this for 23 nights now and am just this week starting to feel better, and I know its the mask I switched to, and Ive only used it for 5 nights now.

Congrats. 1 year into CCRAP and still on my quest for a good nites sleep. Regarding your mask... do you route the hose up the middle of your face as shown in the product picture? Thanks.

No, I dont use the head clip, just let it hang down and pull the slack up and lay across my chest if Im on my back, if Im on my side I stuff some of the hose under my pillow, I am thinking of getting a 8 ft. hose to have some more slack.

[SIRsleepy]

Hello,

I have just recently been diagnosed. I'm still not quite sure what all the numbers mean, but I will. After reading several posts, I see that my problem isn't all that unique. I have allergies and sleep with my mouth open most of the night. My doctor insists that I use a nasal mask, and will not allow a full face mask. I have tried to use the mask at home, however, I cannot seem to get enough air and as a result keep opening my mouth. I have been unable to sleep at all with the mask. When I went to the sleep lab for the fitting of the mask, I slept with the same type of mask (nasal). Although I didn't sleep well, I was able to sleep some. It doesn't seem to be doable at my home. I really feel that if I had a full face mask this problem would disappear. Is there something I can do AND what is the doctor's big hangup on a full face mask? Because this is all so new to me, I don't know my options.
Any help would be greatly appreciated.

S I R sleepy

[carbonman]

Any help would be greatly appreciated.
S I R sleepy

SIR, welcome to the forum.

I guess I have been reading too much negative stuff tonight,
and it puts me in a mood......

I would suggest you do what I did....screw the doc, DME and sleep cntr.

Take charge of and make it, YOUR therapy.
Get yourself educated here and any place you can find information on cpap.
Go to cpapauction.com and get your own masks and equipment.

Become your own best therapist.

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

All the best, it's a journey.

[gasp]

While after 33 years your husband mostly certainly may be a wonderful resource for you in many ways, but probably not a good resource for diagnosing if you have apnea. The sleep study sounds like a better resource. Does he understand what technology was used to determine your diagnosis - probably not or he wouldn't think his senses were better than all those sensors glued all over your body. Perhaps there is something else going on in his mind. It isn't uncommon in my limited experience that a spouse could be irrationally fearful of you having to use devices to save your life or to live a longer healthier life.

Here is a scenario to think of it in another way. If your husband had to use a pacemaker (even though you can't detect an irregular heart rhythm so he may not have arrhythmia at all since you can't sense it : ) You may not like him having to use a pacemaker and wonder if the doctors know what they're doing and made the right choice. It's so invasive after all and his life supposedly depends on it. This may not be the best scenario, but I think you might see what I'm getting at. It might be more about his fear of the unfamiliar or your health than about him thinking you need it or not.

Get it out, use it - all the time.

By the way, welcome! : )

[debtheveg]

Hi again,

Appreciate all the input but the one thing I don't understand is, it seems you're all so accepting of this horrid condition. I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on.

I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea. Is there much research going on in this field? Surgery seems very dubious at best. The CPAP machine has only been around since the '80s, before that severe cases required a tracheotomy, so I guess the cpap is preferable. However, so many people are making a lot of money from OSA sufferers, with all the sales of machines, masks etc. The doctors, sleep labs and so on. It just worries me that there may not be much incentive for a cure to be found, or an effective surgery.

In case you haven't noticed, I very cross about the whole thing!!!

Deb

[ozij]

Hello everyone,

This is my first time here, but have been reading all the subjects over the last couple of months. They've been a great help.

Can you be more specific about the things that helped you?

I was very motivated and optimistic after feeling so good for several hours. However, since then (nearly two months) I have actually felt worse every morning. I seem to be constantly aware of the hose, which I have running under the covers, and as I'm normally a stomach sleeper, am having a really hard time trying to sleep on my back or sides.

As others have said, hanging the hose from above may help some. You don't mention the kind of mask you use - some are much better than others for stomach sleeping. Stomach sleeping (like insomnia) is often the brain's protective response to keep you from choking when you sleep.

On top of all this, my husband doesn't believe I have OSA as he says I don't snore and he's never heard me stop breathing. We've been married 33 years, so he should be aware if I snore!

I take it you mean your husband of 33 years is not being supportive in this therapy, does not believe your doctors, and would be happiest if you got rid of the cpap - as you have just done.
And this also means the if you go on with this therapy, it will be against your husbands wishes. And if you go on against his wishes, and the therapy is successful, he will be proven wrong. And he will have to live with a rested, energetic wife - very different from the one he has now. For some relationships, that kind of a change can be extremely destabilizing.

Has anybody had success with the dental thingy?

Yes, you'll find those people at the "Dental sleep medicine" forum on http://www.talkaboutsleep.com/message-boards/

For people whose choking as they sleep is caused by too small a jaw and narrow airways, there's major surgery called MMA/GA. Billinseattle has been through it, successfuly:

The only two procedures that work well enough to constitute a "cure" for OSA (having better than 95% cure rates in the medical literature) are a tracheotomy (hole in the windpipe) and an MMA/GA (moving the upper and lower jaws and tongue base foraward). Both are extreme procedures. The permanent trach has lifelong issues, the MMA/GA has a long (2-3month) recovery period

I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea.

Because poeple want a better quality of life now. When your oxygenation is the emergency room is less than 90% they don't wait to cure you of whatever it is that caused the low oxygen. They put you on oxygen pronto. Tantrums rarely solve problems.

one thing I don't understand is, it seems you're all so accepting of this horrid condition.

We are accepting of the need to have it treated, glad the possibility exists, and aware that there are some far more horrid conditions.

I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA.[/quote]
Almost obsessed analyzing their stats every morning and so on.[/quote]
I doubt it was "quickly" for most of us. However, whether quickly or slowly, do you think people should not learn about their medical conditions and the treatment the recieve?

Almost obsessed analyzing their stats every morning and so on.

I take that is something you haven't tried during you trial period. So you have no idea what was going on there, to make your experience at home so different from you experience in the lab.

In case you haven't noticed, I very cross about the whole thing!!!

Not surprising, considering the impossible situation you're in.

O.