Replies to This Discussion

Permalink Reply by Shelia Shafer on August 20, 2009 at 3:16pm

I've been fitted with and tried three masks. The one works well, but I still get all stopped up and can't breathe - with or without the mask. I've been taking allergy shots for years and thought it would get better. Anytime I lay down - with or without the mask - my nose gets stopped up and I can't breathe. Sitting up, my nose doesn't get stopped up.



Judy said:

Shelia, your getting your most comfortable sleep in a recliner is just reinforcing what you've already been advised. You NEED to use your xPAP. Which means your DME supplier has GOT to get off their duff and find the RIGHT mask for you. It may be that you would do better w/a hybrid style full face mask - or nasal pillows w/chin strap, or nasal cushion w/chin strap. The mask is THE KEY to successful xPAP therapy once your pressure need(s) have been established. Its YOUR health and YOUR therapy so you are just going to try pushing for more and better support from your supplier and sleep doctor.

Good luck!

Permalink Reply by Jep on August 23, 2009 at 10:57pm

I've suffered from insomnia my whole life, I'm 32 and just found out after 2 sleep studies, 5 doctors and a pharmacy later I have primary insomnia and sleep apnea. I still am not able to fall asleep without ambien, and I can not adjust to my CPAP, I use a full mask after the swift nasal pillows fall off my face as I sleep. I'm very restless, I lay awake for hours, and then wake 8-10x an hour, needless to say I'm a zombie. Is there a way to get your skin use to the mask, I have a ring where the mask fits, and my nose is always dry and peeling.

Permalink Reply by ValerieRose on September 9, 2009 at 4:13am

After years of sleep depervation as a flight attendant. I was dianosed with sleep apena. The machine I have is a REMastar Auto M A-Flex, And Swift Lt for her. My Dr. ordered my card to read and he said I needed to start using my maching...I have been I thought. Some nights I find it messed in the covers. And most nights when I get up to pee. I have the most difficult time getting it back on correctly. But I really do try. How long does the Insurance wait until I get into compliance?
Would this all go away if I lost 30 lbs? I had achillies tendon surgery and have not been able to get active again. Now I'm just soooo tired all the time. I'm happy to have found this group and will read it with great intrest. Thank You, Valerie Rose

Permalink Reply by Ralph C. Stewart on September 18, 2009 at 4:17pm

Hi, I too am new to CPAP, my first problem was with my nose seeming to blister. I have changed masks and it seems to be better so far. None of my health care professionals discussed compliance with me. I never, repeat never, get 8 hours. I do use my machine...but sometimes if I wake up in the early A.M. I will turn it off because I have had trouble getting back to sleep if I try to use the machine in this scenario. None of my health care professionals prepared me for this adjustment. I too thought that once I got the CPAP I would see immediate results. I still am sluggish...and need to "crash" every 3 or 4 days.
It is 3:15 in the afternoon here and I want a nap. I am not angry...just disappointed. Anyone else feel that way?

Permalink Reply by Mary Castrovilla on September 18, 2009 at 6:34pm

I got my CPAP machine/mask on Aug. 27.

There have been so many hurdles I don't know where to start.

BUT the biggest one is the lack of follow-up by sleep doctor and DME tech.Until I found this group, I really felt that I was alone.

How do I know it's working?? I still feel groggy, etc. even though I've gotten mask usage to average of 8.5 hours (just this week - u p from 3 hours initailly) I just read something on mouith breathing...couldn't use the chin strap - was slipping off my double /triple chin. So who knows if the therapy is even working - after all this!!

I AM NOT GIVING UP!! I am sick and tired of missing all kinds of am events.I WANT MY LIFE BACK!!

These are some things that have helped me:
Replacing the hard plastic buckles on Opus 360 with Velcro.
Using a special CPAP pillow - from Carol Martin
Buying a snuggle cover (from directhome medical.com (was getting condension)
Putting a nail above my bed - and with velcro holding the hose in place. (used to wake me up hitting against headboard.Not to mention scaring my cat!!)

THanks everybody for being here!!

Mari

Permalink Reply by Christine C on September 20, 2009 at 9:59pm

As far as the machine itself and the therapy that I am getting, that part is going good. Its the whole finding the right mask that is getting frustrating. When I first got my machine I had to use the ramp. (My pressure is set at 14) after the first week and a half I didn't have to use it anymore. I am able to just put the mask on and push the on button. My numbers are really good from what my DME says. my average leak time is only 3 seconds and my AHI is 3.3
So far I have used the Mirage Quatrro, The Comfort Full, The FullLife, and The Hybrid. The only one that didn't cause sores was the Comfort Full, but I had leaks with that one. I'm just wondering how many other people have had a difficult time with finding the right masks and how many did you have to go through before you found the right one. My major worry is that Medicare will stop paying for new masks with the way I am going through them.

Permalink Reply by susan mccord on October 19, 2009 at 10:18am

YES!!!!!!!!!!

McCord Errrrrrrrr....!

Ralph C. Stewart said:

Hi, I too am new to CPAP, my first problem was with my nose seeming to blister. I have changed masks and it seems to be better so far. None of my health care professionals discussed compliance with me. I never, repeat never, get 8 hours. I do use my machine...but sometimes if I wake up in the early A.M. I will turn it off because I have had trouble getting back to sleep if I try to use the machine in this scenario. None of my health care professionals prepared me for this adjustment. I too thought that once I got the CPAP I would see immediate results. I still am sluggish...and need to "crash" every 3 or 4 days.
It is 3:15 in the afternoon here and I want a nap. I am not angry...just disappointed. Anyone else feel that way?

Permalink Reply by Nikki on January 8, 2010 at 1:51am

I have been using the cpap for about 10 days now and am almost afraid to sleep due to the vivid nightmares i am having...yesterday I was sitting at my desk when a plane flew too close and I had a flashback to the nightmare I had a few days prior..almost had a panic attach which I have never had...I even get up to use the restroom and return to sleep only to pick up the nightmare where I left off...I about can't stand it..any suggestions from anyone or is this a normal start? thanks Nikki

Permalink Reply by Alan C on July 5, 2010 at 10:54am

1st day as Sleep Guide Member. M 59, 205lbs.(Could stand to lose another 25), 18in. Neck, Sleep Study May 23, 2010. Total RDI = 36, AHI= 21.6. Tritration stopped early because I could not sleep any longer.(Choice of 8:30pm or 9:30pm) Initial prescription, APAP, EPR 3, Pressure 5-20. First 3 weeks on Resmed S8, couldn't stand initial pressure of 5cm, had increased to 10-20 after 10 days. Nasal Pillows, (Resmed Swift LT). Sleep prior to study, approx 7 hrs/night. Now, 4-5 hrs/night with a 1 hr nap during day. May 18th switched to Resmed S9. Follow up with Sleep Dr. on May 28, 2010. "Bring your Memory Card, we will download your data for the Physician." What a joke. Get to appointment at Hospital based Sleep Center and they are sorry, but they don't have sofware for the new S9 APAP. Two DME dealers I've been to, don't know how to generate report correctely. Wrong dates, etc. Physician reads first 3 weeks of data on S8, (1st week 5-20 pressure too low) Plus playing with machine, Leaks very high. 95th % 25.2, Max 42. Dr. increases to 13-20cm. By then, anything over 10cm, I start getting mouth leaks. Tried Mirage Full face. Too bulky, too uncomfortable. I sleep on side and back and must toss and turn at night, If I change settings to CPAP with pressure of 9, I can use Nasal Pillows without large mouth leaks. Last night Leaks 21.6 AHI 6.5, AI 6.5 Central 2. Not too bad.

I don't really care about the numbers, but I feel more tired, depressed, discouraged, frustrated, worn out, etc, etc, etc. than ever. Have tried one night without APAP. I slept longer and without arousals, but tired as hell in the morning. I have appointment with different Sleep Physician and facility on the 7th of July. (This hospital based Center doesn't have the new software either)

I go to my Dentist soon. Thinking about a Mandibular Advancement Device. I'm determined to treat my OSA. I just didn't think it would be this hard. Any help would be appreciated.

Alan

Permalink Reply by Judy on July 5, 2010 at 11:15am

Alan, w/the new S9s you don't need the proprietary card reader cable you did w/the S8 IIs and earlier. Any USB card reader for digital cameras will do for the S9's data card. So the next step is the software. Check your PMs (private messages).

There is absolutely NO EXCUSE for the local DME providers who place Resmed xPAPs w/their clients to NOT have the latest version of ResScan (v.3.11). NONE.

Permalink Reply by Alan C on July 5, 2010 at 9:50pm

Thanks for the welcome Judy, Sorry for being ignorant but, where are IM's on this website?

Permalink Reply by Judy on July 5, 2010 at 10:01pm

At the top of this page. Click on My Page.

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