What are you do about it?

I've been on CPAP since November. I finally gave up on it around February and recently am going back at it, but I highly doubt I am going to ever adjust.

I know one thing, I am so sleep deprived that it is really affecting my life. I can't think straight, my short term memory is gone and my head is always in a fog. I'm running out of options.

I've tried about 8 different mask from a nose pillow to a full face, different air settings and I maybe sleep with it for an hour or so and take it off. Sometimes I don't realize I am taking it off and other times I take it off because it wakes me up and I cannot get back to sleep with it on.

This if very frustrating for me and I'm not sure what to do from here. All I know is my head is in a constant fog and it is really affecting my job.

Unfortunately, anyone will tell you that CPAP is not 100% successful, and not everybody is CPAP compatible.  If you absolutely cannot tolerate CPAP, there are a couple alternatives:

1)  Surgery - I forget the acronym or medical term - where tonsils, adenoids, tissue is removed, uvula is trimmed, etc.  Success rate is at best 50%, from what I hear.  Maybe even lower; I'm not certain.

2)  Oral appliances - have a bit lower success rate, I believe, than CPAP, especially for people with severe sleep apnea.

I'm sorry to read you're having such trouble.  Have you talked to a doctor and/or a sleep clinic?

I did talk to my doctor just yesterday and he wants me to continue on cpap. From the horror stories of the surgery, I won't go that route. How do I find a doctor that deals with the dental appliance? I asked my doctor and he didn't know of anyone.

jla930; CPAP is nearly 100% effective, the problem is that not all patients are compliant with CPAP.  The only treatment method that is in the same league as CPAP for effectiveness is tracheostomy, which is even more effective than CPAP.

lzicc; Oral appliances will only work if you have mild to lower moderate sleep apnea, and not always then.  Oral appliances for sleep apnea are dispensed and fitted by certain dentists; your dentist should be able to give you the name of a dentist who fits them.

At one time I thought that I couldn't tolerate CPAP; but after two surgeries I found two things: surgeries doen't work most of the time. and that after I put my mind to it, that I can tolerate CPAP.

Hello lzicc - You really need to give it more time than a couple of months.  I know some people have no problems with cpap right from the start, but there are also many of us who had issue after issue that kept us from feeling like it was a successful solution.  But, as has been pointed out, it's the only thing we have other than surgery (no thanks!!)  I did have to have a deviated septum repaired after I first started cpap.  Having that surgery made a difference for me and allowed me to tolerate the air flow.  

Anyway, it has been 14 months since I was diagnosed with severe OSA and I am now at the point where I get a full night's sleep approximately five nights out of seven.  The difference in how I feel is remarkable.  Today I had the day off from work to do some things around the house.  I was like a cleaning machine!  I am so thrilled with how much I got done.  These kinds of days with this level of energy have not happened in years.  

So keep on trying to make it work for you as once it does, you will find it worth the struggle.  A year ago I was ready to put that machine under the wheels of my SUV but not anymore!  That little machine has become my friend and I hope it will become yours too.  

Is the only problem you are having taking it off??  

I ask because if you are having trouble in any specific area then we all have some ideas that can help.  I know it is hard to make a MAJOR change.  You have been going your entire life just laying down and going to sleep and now you are asked to mask up and then pressure applied and that is overwhelming.

In my case I was able to get past the mask in time but it was the pressure on exhaling that got to me.  I was switched to a c-flex and can honestly say I can't IMAGINE sleeping without it now.  I never thought I would get to this point but am so grateful that I did.

Please don't give up.  Tell us more details regard your specific problem and see if we can trouble shoot for you.


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~ElleMarie~ One day at a time, ARE YOU KIDDING ME! Sometimes it's just a minute at a time.



AHI 100 -Diagnosis June 2007-

lzicc, I too did not adapt to CPAP at all well. I went thru several masks and only managed to sleep less. As my exhaustion increased, I tried to see the pulmonologist/sleep doctor only to be told that he wouldn't see me despite having been referred to him by my primary care provider and having him read the sleep study and writing the prescription for CPAP. I called my insurance company and they were able to find a pulmonologist for me. I went to see him in a major fog and feeling very whiny. He ordered another sleep study to look at BiPAP. At this point, it had been 2.5 months of sleeplessness.  

Before I could have this study I continued to try to adjust to CPAP and became progressively more tired. One day in my utter exhaustion I fell, dislocated my shoulder and tore my rotator cuff (at that point I was 4 months sleepless). I was scheduled for surgery for the shoulder. After the fall and before surgery, I gave up on CPAP entirely. At least I slept and stopped falling. I wasn't cured, just in denial. I did have the study 9 days before surgery. I had to take 2 Ambien in order to fall asleep for the study but it did work. I was prescribed for VPAP. The machine arrived the afternoon before surgery.

lzicc, the point of this rambling response is this: Don't give up.  Keep going back to your DME to try to find a better mask. As others have pointed out--try on the mask lying down and with the CPAP on to better fit the mask and eliminate air leaks. More importantly, see a pulmonolgist/sleep doctor and BE VERY PERSISTENT. This is your life and no one else is going to be as invested in it as you are. Be calm and precise in explaining to the DME and doctor your problems. Take notes daily of your progress (or lack) and things you have tried to deal machine and mask problems and with lack of sleep. Try to analyze your responses to the machine, mask, etc. Work to learn more about sleep apnea, what the study numbers mean, how the machines work, etc. Keep reading in this forum. You will get tips to help you out. You will learn what to ask your doctor. There is comfort in finding others in the same position and in hearing what they have done. Good luck to you and please don't give up. Fight on for yourself and for those who love you.

If I haven't completely bored you, just a few things that helped me. I realized that I was having flashbacks to a near drowning incident and severe claustrophobia with certain types of masks. I needed a more open type of mask. Another thing I realized was that everytime I fell asleep (and stopped breathing) the CPAP would blow in my face and wake me up (that took 2+ months to figure out). While trying to fall asleep again, I couldn't exhale against the CPAP. The change to VPAP really helped and I can exhale easily and am not awakened by the inhalation pressures (not sure why this is so-I am on higher PAP than before). The mask issue improved when I changed to the Hybrid, though it is not 100%. At least now I can adjust the mask while half asleep and get rid of the air leak. Before, I would have to sit up, turn on the light and make adjustments. I am better but I know that there are still issues needing to be addressed, especially when I no longer need post-op pain pills and can sleep in any position other than flat on my back. For now, I am just grateful to sleep most of the night and wake up feeling refreshed.

I, too, had to stick it out to succeed, even though I was losing sleep at first.  After a pulmonologist encouraged me to try my third mask, and the right sleep postion, I could finally sleep through the night after about 2 months.  But it's like training for a marathon.  You go a little longer with the mask each week on average before removing it, 3 hours, then 5 hours, then before you know it-7-8 hours!  I was going to resort temporarily to sleeping pills, but on the day they arrived in the mail and I read the posssible side effects, I opted not to take them, and that is the first night I slept through!  I was determined not to give up, because the consequences were too great.  The sleep position that worked best for me to was to lay sideways at the edge of a contoured pillow, with the mask able to hang off the edge.  Hugging a body pillow also helps me relax my upper body in a more open airway position.  After 5 months, I can now change positions, too, and not lose sleep.  There is one more thing that helps the seal...clean face, no moisturizers.  A heated humidifier helps, too., so you don't dry out as much.  If your mouth opens naturally, you still get dry mouth, but it's worse without the full face mask.

lzicc wrote:

What are you do about it?

I've been on CPAP since November. I finally gave up on it around February and recently am going back at it, but I highly doubt I am going to ever adjust.

I know one thing, I am so sleep deprived that it is really affecting my life. I can't think straight, my short term memory is gone and my head is always in a fog. I'm running out of options.

I've tried about 8 different mask from a nose pillow to a full face, different air settings and I maybe sleep with it for an hour or so and take it off. Sometimes I don't realize I am taking it off and other times I take it off because it wakes me up and I cannot get back to sleep with it on.

This if very frustrating for me and I'm not sure what to do from here. All I know is my head is in a constant fog and it is really affecting my job.

Izicc,

Maybe you don't have the right CPAP machine or mask.  

I have been using CPAP since Oct. 2008.  I had tried ResMed and Respironics CPAP machines set at a given pressure.  It wasn't until I switched to a Respironics Autopap A-flex (which automatically adjusts the pressure to my varying pressure needs) that I began to get comfortable.  Now I would never ever think of going with a machine that just has one set pressure!!   And with its smart card and print-outs, I can avoid doing pricey titration studies with my sleep MD.  That machine is very quiet too!

Also, I started with a bulky full face mask that I thought was good, but actually it was leaking so much that it was often sending the pressure up to 20!!  I now have a minimalist type of full face mask - the ResMed Liberty with nasal pillows - that floats so lightly on my face that it's like "I'm not wearing nothing!"  I had tried the Liberty months earlier when I had just started CPAP, but I was not ready for it then.  Once I had gotten more used to CPAP and had been routinely irritated by air blowing into my eyes from my bulky full face mask and really wanted a change, then I was willing to try the LIberty again - and the second time, I LOVED it!!  It is very quiet, has a good seal, doesn't leave marks and I get the best night's sleep ever!  Don't tighten the straps too tightly!!  Now my pressure is ranging from  9 to 11 most nights (way better than 18-20 with the traditional large full face mask) and I no longer have to use moleskin to prevent sore spots on my face.

Keep trying machines and masks - you're bound to find what suits you.  I sure recommend using a machine with varying pressures depending on your nightly needs.  It made a HUGE difference for me!! I'm sleeping well and feeling so much better!!

Good luck!!

Breathless

In my response to Izac, I meant that I started CPAP in October 2007 (rather than 2008).

Breathless

Quote:

lzicc, the point of this rambling response is this: Don't give up.

It was good to read this post... as I have been at it since August 2007.  There are some improvements, but I am so very tired once again.  Having a mega physical after I get back from my daughter's wedding.  They drew 5 tubes of blood.  Sure hope that they find something... not too much , but enough to help!

The thing that gets me... they will get good results at a tritration and I go home with the same mask, sleep in the same position (back) and get lousy results.  Right now I am on a futon and I told my daughter to leave it in the sitting position and that feels great.  I an on my side, but not the same as I am in bed at home.  The tiredness is still with me, but it has been a hectic week.  I will be interested in checking my card after I get back.
Barb


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Remstar auto CPAP... mask=Hans Rudolph V2
Peace begins with each of us, as individuals

I am glad I havefound this site and read this post. I am getting very frustrated with this CPAP. Atleast I know others are struggling too and maybe at some point there is relief in site.


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Ian