Replies to This Discussion

Permalink Reply by Mary Z on March 1, 2010 at 3:40pm

Smitty, wow, I'm really sorry you're having such a bad time. Maybe it's time to talk about a mouthpiece or surgery. Some docs will prescribe a tranquilizer or sleeping pill that might help with the CPAP. If you mind is made up that you just can't do it- well, you have read all the suggestions for new people starting out and having trouble with the mask so I'm sure you've given it your best try. Don't beat yourself up. Maybe move that doctors appointment sooner and tell him what you told us. Print out your message - it's really clear, and take it to the doctor.
You have a lot going on in your life, you've been lurking so you know how important it is to treat your OSA (18 is a high pressure- that could be hard to get used to). But there are so many other issues you are dealing with I imagine it's hard to sort it all out.
But, for sure be kind to yourself, try to relax. Maybe it's time for some medicine for anxiety. Do you have a doctor you like and trust? I've gotten a lot of help from the medical professionals in my life when I just tell it like it is. Don't pull any punches. You're suffering and need help, not to hear to pull yourself up by your bootstraps.

Good luck, Smitty, and please keep us posted.

Mary Z.

Permalink Reply by 99 on March 1, 2010 at 3:57pm

you are going to fast, slow down

use your mask for 20 mins per night and build up your strenth slowly

and try to get to the one hour mark

perhaps try this during the day and relax this is not just your problem

so just build up slowly

Permalink Reply by Smitty on March 1, 2010 at 5:00pm

Thanks for these replies. I was wondering why it showed "Replies are closed for this discussion". I didn't do that. I waited a long time to make the comment to ask for help and sure do appreciate this. I'll put my CPAP on tonight and keep trying. I think I'll call the medical supplier and see if I can try another type too. I can probably do that right?

Permalink Reply by sleepycarol on March 1, 2010 at 5:27pm

Please talk to your doctor. Move your appointment up, if you are at all able to do that.

You probably will need to try a bipap. It is a step up from a cpap and has two pressures -- one for inhale and one for exhale. I have not used one and am not really familiar with them but do know that with high pressure that can be a viable option.

For some, a nasal pillow or nasal mask is not always effective at the higher pressures due to some of the reasons you are experiencing. There are different full face masks and if at all possible see if your DME can work with you to find one that may make things better. The cotton dry mouth is probably from your mouth being open and the air coming out of it.
Once you get the leakage stopped you may not need so much humidity.

Attitude is everything. Try to think positive about using a cpap. Think of some overnight stays with friends -- and not worrying about being the brunt of jokes. If your friends are true friends then they won't mind the machine/mask at all. Just explain what it does and you maybe surprised some of your friends may know others that use cpaps.

Keep hanging in there!! Know that this too shall pass and at some point you will look back and realize that you have taken a step in the right direction and your body will thank you for sticking with therapy.

Permalink Reply by Amy on March 1, 2010 at 6:24pm

I appreciate that you joined the support group. You tried cpap and you failed which may mean you can be eligible to try bipap which might be more comfortable. You might be eligible for an oral appliance which can help you use a lower pressure.

You have done everything that I would have asked of you as a patient at our lab the next step i to talk to the sleep specialist.

Permalink Reply by Banyon on March 1, 2010 at 7:23pm

What is the manufacturer and model of the machine and mask you are using? What pressure settings are set on your machine? What was your prescribed pressure?

It is common for patients to start out with the wrong machine, the wrong mask and the wrong pressure setting through no fault of your own.

BTW, "Newbie" is not a derogatory term. None of us brought a CPAP over from a previous life. :)

Permalink Reply by Smitty on March 1, 2010 at 9:04pm

Thanks Mary Z, 99, SleepyCarol, jeff, Amy and Banyon -- you're right...attitude is everything and mine needed some adjusting...so glad I came on and wrote for help and support. Glad you all are here helping me.

It is a lot of air pressure and I know it was prescribed as I wrote notes during the sleep specialists follow-up after my sleep study. I had my first sleep study in 2007 - I was diagnosed as mild apnea and now again in 2010 as moderate apnea. The doctor said the sleep study showed that without the mask I got one hour of REM a night and with it--5 hours.

In answer to Banyon, my machine is made by Phillips Respironics, Remstar Pro C-Flex +. Its set at 18 for Therapy and I was prescribed 18. I pushed on info and found an AHI # for 7 days 7.1 and for 30 days it was 6.8. What does that mean? The mask is a Respironics ComfortGel nasal mask. I just read the instruction book and see that I can customize the fit by placing in boiling water, cooling and wearing for 5 minutes to form to my nose. I'll try doing that tomorrow. The equipment is all paid for by my health insurance and it is a 3-month rental for now.

I like the 45 minutes to allow a slow rise to that pressure because I'm fast asleep by that time but I think that's where the problem lies also--in that I don't know where the leaks are until an hour or two later when I probably turn over, the mask moves somewhat and the leaks appear. I read about leaks sometime ago on the forum so new immediately what to do even in my groggy sleep...sometimes I get the finger in and around, lift the mask and place it back down resolving immediately and then other nights I fuss and fuss and finally just take it off and turn it off. I have a chiropractic pillow I've been sleeping with for years but I want to get one of the pillows mentioned in previous discussions as it seems to be even better than the one I have although not a necessity at this time either.

Branson, I asked my husband if the mask resolved the loud snoring. He said I still snore, its just a muffled snore now.

Jeff, I patted myself a couple times when I felt I had made it through another few hours and another night but then I guess it just becomes frustrating when the leaks start and I awake. One thing at a time and slow down like 99 suggested.

Mary Z - you're the best. You could tell I have a lot more going on than just a CPAP. I've been going through a lot and I feel like I finally found the right therepist to help me sort it all out. I went back to do another Sleep Study by my own judgment because I believe that it may have been causing some of my other problems such as lack of concentration, unable to multi-task, weight gain, depression and anxiety. I just want to sort it all out and find solutions to be well again.

You all are fantastic.

Permalink Reply by Noah Calderon on March 2, 2010 at 12:25am

It took me over a year to get used to the CPAP, just keep tweaking it, try different masks--oral and nasal. It's worth it. You can do it.
The past two months, I have had great sleeps while wearing a 3 1/2 inch firm foam cervical collar. My chin is perpindicular to my chest at about 90 degrees. I'm guessing it opens up my soft palate and stops my trachea from kinking. I don't know if this will help you. I also use a little cloth between my neck and the cervical collar to make the support firmer so I can't bend my neck downward in my sleep. Just thought I'd pass this on to you and others. I am so much mentally clearer and feel so better rested sleeping this way.

Permalink Reply by Glenn Davis on March 2, 2010 at 9:48am

OK, first 4 hours is theraputic...not optimal but theraputic. Second, there are nasal masks that are triangles and not prongs...so that might work better. You need to contact your homecare company. They should be checking up on you and making sure the device and therapy are working. If not, they should be willing to help you explore options. Thirdly, a lab worth it's salt will not be satified that you are non-compliant. Call them and asked them to help also.

Permalink Reply by Victoria Castro on March 2, 2010 at 9:48am

I started c-pap last May and I have always used the full face mask because of my facial struture. I tried the nose pillows...forget it...I'm mainly a mouth breather so I got the full face mask. It takes a little time to get used to it however, in the long run you'll feel much better. You'll have more energy in the morning too. I use the resmed quattro pro mask and I have a resperonics with c-flex. I start the pressure off at the lowest and while I'm falling asleep it gradually gets up the the pressure that I am currently at 13. Take care and don't give up ok. Try the full face. It takes a while to find something that is made for you.

Permalink Reply by Stephane Bergeron on March 2, 2010 at 9:52am

Hi Smitty,

So sorry to read about your struggle. I'm a newbie at CPAP myself but it seems I'm having a much easier time adjusting than you are. I was worried before starting my therapy because I had been prescribed a pressure of 15 and I feared I wouldn't be able to deal with that. I have been titrated at home back in November '09 and I had a horrible mask that leaked like crazy and felt that prescription was artificially high because of that.

Like you, I had done a lot of reading before starting so that is why I insisted on getting an Auto-CPAP machine so my therapy could adjust to my "real" pressure needs. My doctor agreed with me and prescribed one and my pressure never went past 11 for nearly a month (and that was a very occasional occurence). My average pressure is 7 or 8 which I can tolerate very well and my AHI numbers are great.

Just mentioning that even though I realize your sleep studies were done in a much more controlled environment than mine and 18 may be the pressure you really need. But then again, maybe not. Others here that are more knowledgeable have suggested a bipap, I use the new Philips Respironics System One Remstar Auto-CPAP machine set from 6 to 18. It is very easy to breathe with it and it is a fully data capable machine which means I can see exactly how my night went and track my therapy and the small pressure changes I made to my machine (I started at 4 to 18 and increased the low pressure to 6).

In any case, before resorting to other measures, I would stick with PAP therapy and try either a BiPap or Auto-CPAP machine. Your doc and the experts here are in better position to suggest the best option for you than I am but I know I could never go back to sleeping as poorly as I had for years before starting CPAP...

Good luck and hang in there!

Permalink Reply by RockRpsgt on March 2, 2010 at 10:15am

Prior to the 1500s snoring was considered the voice of the devil. If you were known to snore you were tied in the town square for everyone to hear how evil you were.

At least now it is jokes in bad taste. We have come so far! Never give up your sense of humor Smitty. Let em laugh, laugh with em. You have to admit snoring is kind of funny. If you do not believe me put yourself in my shoes for a night. I tell my wife and kids I am going to the symphony when I go to work. If I can't laugh at my job I'm screwed.

Smitty, When you have them all laughing, listening, and relating to you remember to educate them.

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