Replies to This Discussion

Permalink Reply by Chris on January 5, 2011 at 2:19am

Hey Don

 

I have been using CPAP for about 3 months now and I do feel much better for it. Having said that there a good nights and bad nights. The key seems to be the right mask for you. Many suppliers here will let you try the mask for a couple of weeks. I don't know if it is the same in the US but it is worth a try. I like you found that the the full face masks that I have tried leak like crazy the moment I roll over. Some masks are significantly noisier than others. One mask I tried which was supposed to be the latest and greatest sounded like I a bloody wind tunnel, another vented strait out the front right in my wife's face, a third one produced so much condensation that the water in the mask woke me up, yet another was a pressure sore monster.

 

After a month of buggering around we found the right mask for me. Once the mask was right I quickly got so used to the pressure that now sometimes I wake up in the morning and wonder if the machine is still on. To be fair I have a AutoPAP with SensAwake so that it turns the pressure down to 7.7 when I am awake and up to 18 when I am sleeping.

 

Soldier on buddy. With the right mask you really can get used to it. I promise it gets better.

Permalink Reply by Don Dodge on January 5, 2011 at 6:42am

Thanks Chris.  I switched to a full face and got the same problems you mention.  It leaked copiously when I rolled over and gave me a pressure sore on my nose.  I went back to the nasal mask last night and it's way more comfortable this time.  I'm still not sleeping all that well, but it is improving.  Thanks for your commiseration!  8-)

Permalink Reply by Don Dodge on January 5, 2011 at 2:13pm

I don' t really know how to say this but - Is there, somewhere, an up side to all this?  Tired as hell yesterday, way worse than before I was diagnosed - almost fell asleep while driving.  Worse today, not only tired but depressed.  I feel like I was better off with the sleep apnea I didn't know I had. . .

Permalink Reply by Mary Z on January 5, 2011 at 3:53pm

Don, some people never get over the excessive daytime sleepineess.  Talk to your doc.  You may need an adjustment to your pressure, or a prescription for a stimulant. Provigil and Nuvigil are two of the  common ones used.  For some of us it is harder than others.  After nearly three years I still don't have my pressures titrated correctly (complicated by a change in docs).  Hang in there and keep asking for help.  I would let the doc know how you are feeling.  Good luck.

Don Dodge said:

I don' t really know how to say this but - Is there, somewhere, an up side to all this?  Tired as hell yesterday, way worse than before I was diagnosed - almost fell asleep while driving.  Worse today, not only tired but depressed.  I feel like I was better off with the sleep apnea I didn't know I had. . .

Permalink Reply by Don Dodge on January 5, 2011 at 4:36pm

Thanks, Mary.  Alas, with my health care plan, you don't get to talk to your doctor, but rather an endless series of answering machines that lead nowhere.  I'm thinking of going to an acute care place, where you can at least talk to a human being.

Permalink Reply by Don Dodge on January 7, 2011 at 6:42pm

Thanks to all of you.  I finally settled on the nasal (less leaks and pressure sores) and I now take it off if I wake in the night and am just lying there listening to my breathing.  Still haven't seen any waking benefits, but at least I'm getting some sleep!

Permalink Reply by Donna B. on January 8, 2011 at 3:44pm

Don, I know when I first started on my CPAP I expected "instant" results. It took about a month before I noticed a difference in the daytime fatigue. Before treatment I could have fallen asleep during/after lunch without a problem, just shut my eyes for a minute and poof, I'd be asleep. Didn't help that I still had 4 more hours of work ahead of me and then had to commute home. I prayed for a day that I would not have to nap during the day, go to bed at 8P and have enough energy just to do the laundry !

It is hard in the beginning, it is new to your body and your mind. It takes determination not to let it get you. We are here to keep you going ! Take it one night at a time...

Donna B.

Don Dodge said:

Thanks to all of you.  I finally settled on the nasal (less leaks and pressure sores) and I now take it off if I wake in the night and am just lying there listening to my breathing.  Still haven't seen any waking benefits, but at least I'm getting some sleep!

Permalink Reply by Mary Callahan on January 9, 2011 at 4:28pm

Don, I just finished my first month and it was horrendous, just like you felt worse each night/morning. Just this morning I felt like I sleep with Darth Vader, because all I can do is hear myself breathe all night long, especially since besides the sleep apnea/UARS, I have chronic insomnia. I am such a light sleeper.

But I keep reading that if I can get through this I won't be afraid to sleep, since subconsciously I am afraid to suffocate - I think Dr. Krakow mentions this.

Yes, it is hard, but it does get better, or at least maybe we just get used to it. I have asked more than my share of questions here and these people have been wonderful. Without it I would have thrown my machine at the first sleep doctor who ordered it. Of course he was useless in helping me as was the DME company, and so I switched doctors. I may switch DME companies as well.

I also keep improving my pressures. When I started my doc ordered from 4-15. I have been able to narrow it down to 7.4-10 and I believe those changes have also helped me tolerate treatment better.

My latest sleep doctor ordered some neurontin for me and that might be helping. Just not sure if I am just getting more used to the machine or if it is the neurontin. I use nasal pillows since I am also claustrophobic, and have found them mostly okay. Did try a sleepweaver mask, it was extremely comfortable, but that thing leaked like crazy and made so much noise I had to buy earplugs, but so noisy even the earplugs did not work.

 

But I am hanging on because from what I've read here, it can take awhile before things fall into place. Also I am very stubborn and needed to prove lots of people wrong who thought I would have given up! Plus I am doing it for my own health. If I can only sleep than many of my other problems (mainly the fibromyalgia) should go away.

Here's hoping you won't give up too soon. 

Permalink Reply by Don Dodge on January 9, 2011 at 5:05pm

Thank you, Donna and Mary.  I'm still plugging along, hoping for the best.  Your empathy makes it easier.  I use 3mg melatonin to go to sleep sometimes.

Permalink Reply by Donna B. on January 9, 2011 at 7:43pm

Don,

As I said before, the first 30 days or so seem like an eternity. I would dread bedtime, I was mad I couldn't just "go to bed". I had to "prepare" for bedtime. I would be so exhausted that just turning on the machine and getting the headgear on was a chore in itself.

In the few months since I have been on CPAP I have changed the way I look at sleep. I look forward to bedtime now. I know I have to "hook-up" or else the next day I won't be worth a damn. On the few nights that I was unable to use my CPAP (due to a nasty sore in my nose) I noticed a huge difference in how I felt the next day (tired and foggy). It made me realize that CPAP therapy does work. SO.... it WILL get better in time, just not as quickly as we all would like it to.

Also, I use a Swift FX nasal mask, I bought AYR gel for my nostrils, it helps keep the inside moisturized and prevents the sores from dryness. It has helped a lot.

If it weren't for this support group I believe a lot of people would have given up too soon.
I know you can do it Don !!
Donna B.

Permalink Reply by Bex on January 10, 2011 at 9:31am

Donna, it was so good to read your entry because I have had a cold for a couple of weeks and my C-pap use has been on and off. I was waking up in the middle of the night with one of my nostrils stuffed and kept feeling like I was struggling for air. Well, I tore off the d@#$% machine each time it happened. That resulted in a crummy next day, taking vivarin to stay awake at work, along with a quick nap in the restroom. . . I was really feeling guilty about that, so it's good to know that I do not struggle alone.  

 

I will try again to be an all-night user, but invariably I wake up and there is only so long I can lie there and listen to me breathe while the machine hums, loudly.   Thanks 

Donna B. said:

Don,

As I said before, the first 30 days or so seem like an eternity. I would dread bedtime, I was mad I couldn't just "go to bed". I had to "prepare" for bedtime. I would be so exhausted that just turning on the machine and getting the headgear on was a chore in itself.

In the few months since I have been on CPAP I have changed the way I look at sleep. I look forward to bedtime now. I know I have to "hook-up" or else the next day I won't be worth a damn. On the few nights that I was unable to use my CPAP (due to a nasty sore in my nose) I noticed a huge difference in how I felt the next day (tired and foggy). It made me realize that CPAP therapy does work. SO.... it WILL get better in time, just not as quickly as we all would like it to.

Also, I use a Swift FX nasal mask, I bought AYR gel for my nostrils, it helps keep the inside moisturized and prevents the sores from dryness. It has helped a lot.

If it weren't for this support group I believe a lot of people would have given up too soon.
I know you can do it Don !!
Donna B.

Permalink Reply by Donna B. on January 10, 2011 at 10:05am

Hi Bex,

I have not used a full face mask yet, I have had good results with the nasal pillows. I used them at my first sleep study and they were comfortable for me. I asked for them when I got my own CPAP machine. I originally was using the F&P nasal mask but it didn't last that long (lots of leaks)  so I switched to the Swift FX for her and what a difference! Even though I have to switch it out every 4 months, it is far better than the F&P.

As for the nasal congestion and soreness, I use Carmex (in the yellow and red tube) for the outside of my nose and then the Ayr Nasal Gel for the inside. I tend to get soreness in between my nostrils on the outside where the pillow rests.

Most nights I am able to get 6-7 hours of good sleep with the CPAP. I find I wake up around 4-5am and I just take it off. I do get up every morning around 5:30a for work so that last hour or so is wasted but still I am happy with the hours used. Some mornings I wake up and it is still on so I guess you could consider that a full night, 8 hours or so. 

I am using the ResMed S8 Escape II, it is very quiet ! What model are you using? Full mask or nasal pillows?

Donna B.

 

Bex said:

Donna, it was so good to read your entry because I have had a cold for a couple of weeks and my C-pap use has been on and off. I was waking up in the middle of the night with one of my nostrils stuffed and kept feeling like I was struggling for air. Well, I tore off the d@#$% machine each time it happened. That resulted in a crummy next day, taking vivarin to stay awake at work, along with a quick nap in the restroom. . . I was really feeling guilty about that, so it's good to know that I do not struggle alone.  

 

I will try again to be an all-night user, but invariably I wake up and there is only so long I can lie there and listen to me breathe while the machine hums, loudly.   Thanks 

Donna B. said:

Don,

As I said before, the first 30 days or so seem like an eternity. I would dread bedtime, I was mad I couldn't just "go to bed". I had to "prepare" for bedtime. I would be so exhausted that just turning on the machine and getting the headgear on was a chore in itself.

In the few months since I have been on CPAP I have changed the way I look at sleep. I look forward to bedtime now. I know I have to "hook-up" or else the next day I won't be worth a damn. On the few nights that I was unable to use my CPAP (due to a nasty sore in my nose) I noticed a huge difference in how I felt the next day (tired and foggy). It made me realize that CPAP therapy does work. SO.... it WILL get better in time, just not as quickly as we all would like it to.

Also, I use a Swift FX nasal mask, I bought AYR gel for my nostrils, it helps keep the inside moisturized and prevents the sores from dryness. It has helped a lot.

If it weren't for this support group I believe a lot of people would have given up too soon.
I know you can do it Don !!
Donna B.

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