desperate

Hi all. I'm a 34-year-old male who's been diagnosed with sleep apnea since 2007. I've probably had it all my adult life, though. Untreated, I wake up like 62 or 64 times an hour. I went to the ENT on Friday and got the news that a UPPP would likely only have a 30% success rate. That verdict has left me crushed all weekend. I know there are other options, but adjusting to the mask is what it all keeps coming back to. And honestly, I'm devastated. Crestfallen. I've been walking around miserable. I've slept for a few hours with the mask here and there, but I hate the device so much. I'm a bit desparate and looking for support and understanding whereever I can find it. Thanks.

It would really help us to help you, if you register and put in your mask and machine (in text - not pictures) via the "User Control Panel at the top of the forum page.

If you haven't been fitted with the right mask, and the right fit for it, then your experience will be awful. What have you tried so far and do you know what pressure your machine was set at?

I'm amazed at how quickly I got a response on here! Thanks.

My machine is from the REMStar M Series. I looked at the humidifer that's in the machine, and it's not labeled; but if it would be useful, I will dig up the literature that came with it so I can properly name it. Kindly let me know.

I have been using two masks, neither with great success: a ComfortSeries Respironics full-nose mask, and the Comfort Lite 2 (I'm currently using the full-nose mask, and I've used the inserted nose cushions, and don't care for them, although I will give them another shot. I also have a third type of nasal interface on the way courtesy HealthNet; these go outside the nostril and are not meant to be inserted fully). Both masks feel too cumbersome, but each were the most suitable I could find when I had my mask fittings. This weekend I ordered the Swift Mirage 2 blind off Amazon, because the reviews were so glowing and my health-care company said it was far and away the most popular mask they stocked. AND: I'm going for a fitting at the NYU Sleep Center on Wednesday, although I don't know that I'll find anything better there; they don't stock some of the newest masks that I've heard about, including the Swift Mirage 2.

My pressure is "7.0" and is ramped up over 15 minutes from a starting point of 4.0. I am 5'6" and weigh 167 lbs (the high end of my range thanks to holiday office treats; as low as 157 lbs this year). I stopped smoking cigarettes on 9-17-06. I also weighed 195 lbs at one point, but lost the extra pounds last year. Unfortunately, neither quitting smoking nor losing weight seems to have helped my apnea.

I also have learned insomnia. It's very difficult for me to sleep the whole night. Falling asleep isn't generally a problem, but I wake up in the middle of the night with terrible anxiety, and often can't soothe myself or fall back to sleep. Before I was diagnosed with apnea, my doctor prescribed Klonopin, which I take 1mg of before bed.

My plan is this: I am leaving NYC for fifteen days, from this Sunday, 12/20, through Sunday, 1/3, visiting friends and family in Oregon and Massachusetts. Since I generally sleep better anywhere other than my apartment, I am going to take my CPAP and all my masks and really try and acclimate to them. I'll already be in a different location, away from daily stresses, and the frustration from mask failures I've had in my apartment.

After I have become comfortable with a mask, however long it takes, then I intend to have discussions with my physicians about weaning off the Klonopin. But the prevailing logic (and I do hope I've been properly advised) is to get acclimated to the mask before worrying about the Klonopin.

Can anyone tell me how to put the information about my equipment permanently in my profile, so it shows up automatically whever I post?

If you've read this far, I thank you greatly. I just needed a forum to let it all out; my friends and family try to help but have no personal experience with apnea.

Warmly,
Ross

Ross, I hope you can find a mask that fits you well, and that you can become friends with it. When I had my sleep study, my respiratory tech said that the body adapts to the mask and cpap very quickly...it's the mind that takes a long time.

When you're at the sleep center, take advantage of their mask selection, and their expertise in fitting you, both sitting up and lying down. Take your old masks with you, and see if they have any tips for adjustment. The mask really is key. Good luck to you. Come back here often and read. You will find that many have the same frustrations that you do, and gradually we learn to overcome them.

Last night (after 2 months on cpap) I woke up in the middle of the night, and wondered if the air was on, and whether my mask was still on my face. It still was, and I never thought I would come to feel that comfortable.

My pressure is "7.0" and is ramped up over 15 minutes from a starting point of 4.0.

Most people have a really hard time with pressure of 4 - It feels like you can't breath. Turn the ramp off and get used to 7 which isn't all that high.

Also turn your mind around - get some help from a therapist to celebrate the fact that with cpap your life will be turned around and you won't die young.

.

Springsteenfan, you might consider some quick preventive methods until you resolve your issues. Such as, simply sleeping on your side and propping a pillow so your discouraged to sleep supine.

Another is the 'Falcon Method'. Search 'falcon' on this sight, you'll see a method for sleeping on your stomach. Though, I have a bit of a paunch , that might be difficult.

Sleeping on a recliner, at an angle to to discourage closing of the throat.

No guarantees!! But it couldn't hurt to at least try.. Might give you a clearer head to start solving, these sometimes difficult, problems of therapy.

You might need someone reliable in your life to start helping you with the technical aspects of OSA. And of course, you have this web site

Good luck,

SG

Oh... thank you to everyone. I'd really been throwing a bit of a pity party for myself this weekend. The speed and kindness of your responses is really wonderful.

For many years I could ONLY sleep on my stomach. I was baffled how anyone slept any other way; but over time, I grew to sleep supine, too. I didn't realize how much it was exacerbating my condition to do so.

And...the "dominant story" idea is a great one. I want to imagine myself several months from now, comfortable with my machine, able to keep this whole matter in perspective, happy to be here, helping another newbie like I am being helped today.

You see, no one ever explained to me the dangers of NOT treating my apnea. In fact, I'm still learning. I thought I would just be tired more. I didn't know that memory and cognition could be affected. How will I ever know how the years of untreated apnea, where my brain was apparently deprived of oxygen in my sleep, impacted me? Everyone says I'm really sharp, so maybe best not to think about this; but I would like to hear how others have dealt with said revelation.

And the above comment that I should be thankful that I won't "die young".... Maybe this is a basic question, but does apnea really shave time off your life? No one has ever said that to me point blank--and frankly, maybe I need to be scared straight. Is this in reference to the heart failure that I've read can be associated with apnea?

Gratitude to all.

And the above comment that I should be thankful that I won't "die young".... Maybe this is a basic question, but does apnea really shave time off your life? No one has ever said that to me point blank--and frankly, maybe I need to be scared straight. Is this in reference to the heart failure that I've read can be associated with apnea?

Sleep apnea puts a huge strain on the heart and causes high blood pressure. The lack of oxygen to the brain plus the heart issues can cause strokes. Lack of oxygen to the brain also causes memory impairment. Lack of REM sleep can cause various mental illnesses such as depression, paranoia and other psychoses. It can cause acid reflux (GERD) which can trigger asthmatic attacks.

And it makes you tired and irritable.

Ross if you would register we could send you a pm on here which is a private massage to you that no one else can see. we can also always see what equipment you have be able to better help you.

As far as the UPPP, it doesn't have a high success rate as many on here will tell you. I would like to say this, that I believe the success rate also depends on the doctor doing it. I had a uppp and a tonsillectomy done last spring. My pressure was reduced from a required 21/17 BiPap to BiPap auto where my pressure rarely goes over 9. I am having another surgery next spring to fix my nose, at that point I will have lost more weight. I am down to 195 from 240 pounds and my doctor has said with the weight loss and both surgeries I probably won't need cpap any more. My doctor also did both of these procedures on a co worker but he didn't lose any weight and he is off cpap. I was retested on a supposedly split titration, where I sleep part of the night without and then the second half of the night I am but on cpap to titrate what pressure I need. I never got to the second half of the study because they said I don't need it. My doctor however said I had enough events when she read the data and also stated that since I feel better on cpap that I should stay on it until the other surgery or until I feel ok without it.

So don't put the surgery option out. Have you ever heard of Dr. Steven Parks? He is one of the top sleep apnea ENT's in the country. I believe her is from your area and would suggest you talk to him before you make any decision for or against surgery. The doc I went to is an ENT who specializes in sleep apnea pt's who are not doing good or having major problems. She just like a few other docs just like her will only take on a pt if they believe they can help the pt.

The biggest cause i have read of people not being successfully treated with cpap or not wanting to use it is improper mask fitting. If your mask leak rate it high you will not be able to have successful treatment. Also try other masks, contact your DME and ask about trying other masks. I use the quattro which is seems many people use when they are not successful with other masks.


Also congrats on quitting smoking. Quitting is a long uphill road. I was a smoker since my teen years and I quit smoking about 19 months ago.

Do you have allergies? You said you sleep better when away from your apartment, and I wonder if their is an air quality problem or something there that you are allergic to that has caused some mild swelling in your airway that could be making your sleep apnea worst.

Gerry

springsteenfan wrote:Can anyone tell me how to put the information about my equipment permanently in my profile, so it shows up automatically whever I post?

Welcome to the forum, Ross! It would help if you could find out exactly which CPAP machine you have and post that information. You can fill out your machine profile via the "User Control Panel", which is at the top left of the screen. It'd be better if you use the "text" option rather than the equipment photos.

As several have already said, the right mask type and fit are big keys to successful CPAP therapy. BlackSpinner mentioned perhaps turning off the ramp feature, as it can be more difficult to breathe at a very low pressure of 4. I found that to be true myself. Depending on your machine, there may be other features that can be changed too.

You have come to the right place for information and support! Down the road you may very well view this difficult weekend as a turning point in your life and the beginning of better health. It really does help to educate ourselves about sleep apnea and all the negative effects it has on our health. I read recently that untreated sleep apnea can shave 10 years off our lives! We are very fortunate that there is therapy to manage it.

~ DreamOn

You've already had some good information and advice. I see from your responses, that you are learning!

To enter your equipemt information so that it shows up on all of your posts - click on "User Control Panel". It's at the top of the forum page under "search".

Then click on the "Profile" tab. On the left click on "Edit Equipment". Then just choose from the list as far as your machine and mask are concerned and some other information but these 2 are the most important.

Remember to choose "text" as the way it will show. Many of the machines look the same but are very different really. Be sure also, when you select your machine to select exactly which one it is. You told us you have a Remstar M Series but it helps if we know if it is a "Plus" a "Pro" or an "Auto". It will say on the top of the machine. If the humidifier is attached it is the "integrated humdifier".

I see , while I was typing, others have told you how to add your information but i'm going to post this anyway since I think I added a couple of things not mentioned.

springsteenfan wrote:Can anyone tell me how to put the information about my equipment permanently in my profile, so it shows up automatically whever I post

It doesn't look like you are officially registered with a login for the site... you are essentially posting as a guest even though you have chosen a username when you post. You need to click the Register link up in the upper right next to "Login". Once registered and logged in, you'll have a User Control Panel where you can add your equipment information in your profile.

Regarding the issue you posted about, it sounds like your resistance to the whole CPAP experience is that you see this is a big burden on your life... that you'll never be able to sleep like a normal person again... that you'll need to wear this thing for the rest of your life. I'm making assumptions here, but I can say that I'm sure these things crossed many of our minds when first diagnosed and prescribed CPAP/APAP/BiLevelPAP.

Well... the last of those is true (that you'll need to wear this the rest of your life)... but who knows maybe they'll come up with alternative effective apnea treatments in your lifetime. I suspect many of us would continue with xPAP therapy anyway... I've only been using it for about 2 months and I have really gotten used to it and even like it. As I posted on the "dominant story" thread, I really like the sensation of being fed fresh humidified air all night.

Regarding the other things... it may seem like a burden, but once you work it into your routine, it is as normal as brushing your teeth before bed... then you fill up the humidifier, then you put on the mask. Regarding never being able to sleep like a normal person again... you are not sleeping like a normal person now. Waking up with anxiety could be that your body has woken you up in a panic because you aren't breathing. This has happened to me... I woke up feeling like I was choking and it took a good hour to feel like I could breath normal and fall asleep again. I don't know if this is your situation or not, but it sounds familiar to me.

I'm one of the lucky ones in that I have gotten used to APAP therapy pretty quickly, though that first night in the sleep lab it sure didn't seem like I would. I was already thinking of how maybe I really don't need this... maybe my apnea really isn't that bad. I'm glad I stuck with it... started with it every night until I felt comfortable leaving it on all night. My issues were with masks... finding the right one took 3 tries, and I'm still in search of the perfect full face mask for when I have a cold or a stuffed nose.

I'm glad you found this forum, Ross, and I'm glad you are committed to giving this another try... remember that there are many of us fellow hose-heads out there to help you.

Hi again. First, you may not have to "wear it the rest of your life" because science is jumping ahead by leaps and bounds all the time and there are new things on the horizon now, just not ones that have yet to be proven (or affordable) 100% good for the majority of people today, but I don't know if Cpap (and masks) will even be around in 5-10 yrs at the rate things are going. Secondly, you said you sleep worst in your room. It could be that you just let yourself worry, etc. most when you're there, but maybe there are other reasons, e.g. unconsciously having the heat up too high (we all sleep better in cool conditions), or certain noises, or even a "bad" mattress. It might be a good idea to examine why the room is a problem because it's the place you should feel best, not worst.

Another thing - so many of us find that after starting Cpap, that blows air into our system, we unknowingly become mouth breathers at night (probably the pressure) and if that's the case, you'd be losing all the Cpap air out that way and get no benefit at all. If you think you might be in the category, or have someone who could see it, then you should consider a full face mask (which is also great when you get a cold). Chin straps are not known to be as effective.

I also feel that 7 is the bare minimum of pressure anyone could reasonably be set for, but so many MD's prescribe it initially, maybe hoping it's all you'd need, or whatever, but in fact, it seems that the majority of us end up with our machines set at (if you have an Autopap vs Cpap) from 8 to 12 cms, with 10 being the magic number in between, and the one you'd want to use if only on Cpap. Would you be willing to try having your machine set at least a bit higher, i.e. 8 or 8.5 to see if you feel better? Lots of people here could help you to do it. Just something to think about.