Beginning to think this is pointless...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
SunnyBeBe
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Re: Beginning to think this is pointless...

Post by SunnyBeBe » Fri Jul 03, 2015 4:12 pm

I like the suggestions by HoseCrusher upthread. I would like to add that I was so optimistic that cpap therapy would help me that I think it really helped me adjust pretty quickly.

1. Make sure the nasal pillow is comfortable. I mean, really comfortable. The first few nights mine was too tight. I didn't realize I didn't need it that tight. It can barely feel like it's there and still stay on without leaks Also, make sure it's not too small. I went from small to size Medium and it worked like a charm.

2. Use a cpap product or a tiny bit of K-Y on the nostrils. It keeps the soreness away. If your nose is sore and in pain, you won't sleep well.

3. Position the hose up higher than your head with a device designed for that purpose of by draping it on your bed posts. I have posts that it wraps around and comes down to my head nicely. If it's directly connected from the machine to your head, it pulls and places pressure that can distract you.

And if all is comfortable, but you still don't feel right.

4. I watch about 20 minutes of some mindless tv with the machine on and then turn the tv off and relax. I envision the healing that is taking place in my body. As I relax and breath smoothly, I keep saying to myself. "I am being healed. The air is so good for me. I''m regaining my old self back. I am now getting my rest. I feel so content now." I go to sleep pretty soon and get a good night's sleep now. If I do wake up, I tell myself that it's safe to sleep now. I am in good hands with my cpap.

I hope things get better for you.
Machine: ResMed AirSense 10 AutoSet (contains humidifier)
Nuance Pro Gel Pillow and headgear

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Fri Jul 03, 2015 4:33 pm

kteague wrote:Just saw your post about the grandkids. Are you solely responsible for them at all times? That would make napping harder. Are there any family members or friends you can ask for help for a little while? You can't be superwoman. Unless you have to. Then we do what we have to do. Just wishing there was a way to find some relief. If you continue to decline you won't be much use to them and someone else will have to step in and help out. Not knowing your situation, I hesitate to say much more about that. Easy advice is often worthless in a given situation. I remember feeling almost scolded on here for looking for a cheaper solution to an already inexpensive item. What the posters had no way of knowing was that at that time I was standing in line at food banks just to get something to eat. Most people's advice (including mine) is well intended, but not well informed. Just hoping you can find a way to get some help so you can begin to recover.
Thank you for your concern. No, I'm not solely responsible for their care. They are just visiting. I will find a way somehow to try each suggestion that is being given to see if it works for me, and go from there. I am going to turn down the ramp tonight, because right now it's set at 40 minutes. And it makes total sense what you said about optimizing the most of the time I do sleep with the proper pressure settings. Do you have any tips or suggestions on how to deal with a dry nose and sore throat?

HoseCrusher
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Re: Beginning to think this is pointless...

Post by HoseCrusher » Fri Jul 03, 2015 5:40 pm

All right, grandkids take priority of sleep... but just for today.

If you want to use the ramp set it for something in the 5 - 10 minute range. You don't need anymore time to get use to the full pressure.

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Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine is an AirSense 10 AutoSet For Her with Heated Humidifier.
SpO2 96+% and holding...

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Fri Jul 03, 2015 6:21 pm

SunnyBeBe wrote:I like the suggestions by HoseCrusher upthread. I would like to add that I was so optimistic that cpap therapy would help me that I think it really helped me adjust pretty quickly.

1. Make sure the nasal pillow is comfortable. I mean, really comfortable. The first few nights mine was too tight. I didn't realize I didn't need it that tight. It can barely feel like it's there and still stay on without leaks Also, make sure it's not too small. I went from small to size Medium and it worked like a charm.

2. Use a cpap product or a tiny bit of K-Y on the nostrils. It keeps the soreness away. If your nose is sore and in pain, you won't sleep well.

3. Position the hose up higher than your head with a device designed for that purpose of by draping it on your bed posts. I have posts that it wraps around and comes down to my head nicely. If it's directly connected from the machine to your head, it pulls and places pressure that can distract you.

And if all is comfortable, but you still don't feel right.

4. I watch about 20 minutes of some mindless tv with the machine on and then turn the tv off and relax. I envision the healing that is taking place in my body. As I relax and breath smoothly, I keep saying to myself. "I am being healed. The air is so good for me. I''m regaining my old self back. I am now getting my rest. I feel so content now." I go to sleep pretty soon and get a good night's sleep now. If I do wake up, I tell myself that it's safe to sleep now. I am in good hands with my cpap.

I hope things get better for you.
Thank you for all of your suggestions. I think I might change the pillow size tonight, as well as adjust the hose.

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BlackSpinner
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Re: Beginning to think this is pointless...

Post by BlackSpinner » Fri Jul 03, 2015 6:26 pm

Do you have any tips or suggestions on how to deal with a dry nose and sore throat?
Dry nose needs more humidity.

Sore throat means you are mouth breathing (and that could be where your leak numbers are coming from) try an ace bandage as a chin strap to see if it helps.

The best lubricant to use is a nipple cream used by nursing mothers called "lanishol(?)" or something like that - it is lanolin based cream that has no petroleum products in it.

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear
Additional Comments: Quatro mask for colds & flus S8 elite for back up
71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal

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Kakkles
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Re: Beginning to think this is pointless...

Post by Kakkles » Fri Jul 03, 2015 6:46 pm

Lubricant is:

BRAND: Lansinoh

HPA Lanolin

In the Baby Isle, used for soothing dry cracked nipples in nursing mothers. I have used it with success.

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MarylandCPAPer
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Re: Beginning to think this is pointless...

Post by MarylandCPAPer » Fri Jul 03, 2015 10:04 pm

I started off a day or two later than you on the same new, state-of-the-art adjustable machine. I was used to a different model for 5.5 years. Fortunately, I had some ideas on what adjustments to make and got advice here on how to make them. Now, I am hibernating 14-15 hours/ night for the last 2 nights, after being ready to drop the new machine off a tall building the first night.

Adjustments to your treatment are obviously needed. That is nothing to worry about. After 4 days of use, it is typical. At the start, it may be hard to use the machine for long periods, so take breaks, naps, or whatever you can manage at the moment to get enough sleep using the machine. At the start, using the machine for 4 hours at a time is an achievement. You have a lot to get used to. That is normal. Don't give up.

I think I recall from your first posts that you are claustrophobic, as am I. I am getting a larger leak than you are on the same machine and the same mask, and am also trying to figure it out. I am now happy with the new machine and still love the mask. Don't give up on the P10 mask after 4 days!!

It is a shame you are starting treatment during a visit by the grandkids. Ideally, you would be able to focus on yourself more at the start of treatment, but it will work out. You are making good progress, even though it may not seem like it to you now.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Have also used Opus 360, Swift LT for Her, Optilife, and Breeze Nasal Pillows masks.
Started CPAP 12/18/09 Pressure 13. Changed to APAP 1/18/10, Pressure 10-16. 4/2014:Switched to AirFit P10 mask. PR System One REMstar Auto Series 550 with A-Flex for 5.5 years. 7/2015 to present: AirSense 10 AutoSet FOR HER. Range: 10-20

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Fri Jul 03, 2015 11:06 pm

MarylandCPAPer wrote:I started off a day or two later than you on the same new, state-of-the-art adjustable machine. I was used to a different model for 5.5 years. Fortunately, I had some ideas on what adjustments to make and got advice here on how to make them. Now, I am hibernating 14-15 hours/ night for the last 2 nights, after being ready to drop the new machine off a tall building the first night.

Adjustments to your treatment are obviously needed. That is nothing to worry about. After 4 days of use, it is typical. At the start, it may be hard to use the machine for long periods, so take breaks, naps, or whatever you can manage at the moment to get enough sleep using the machine. At the start, using the machine for 4 hours at a time is an achievement. You have a lot to get used to. That is normal. Don't give up.

I think I recall from your first posts that you are claustrophobic, as am I. I am getting a larger leak than you are on the same machine and the same mask, and am also trying to figure it out. I am now happy with the new machine and still love the mask. Don't give up on the P10 mask after 4 days!!

It is a shame you are starting treatment during a visit by the grandkids. Ideally, you would be able to focus on yourself more at the start of treatment, but it will work out. You are making good progress, even though it may not seem like it to you now.

Thank you for your words of encouragement. I can't give up at this point, I am just really frustrated. Yes, we do use the same mask, but our machines are different. Yours is an "auto", whereas mine is just straight cpap. I really need to get more sleep and time on the machine before I make any adjustments just yet. Hopefully we can get our leaks under control. I think mine are coming from mouth breathing. I have a chin strap and will use it tonight and see how it goes!

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Fri Jul 03, 2015 11:08 pm

HoseCrusher wrote:All right, grandkids take priority of sleep... but just for today.

If you want to use the ramp set it for something in the 5 - 10 minute range. You don't need anymore time to get use to the full pressure.
Lol yes they do! I will adjust the ramp as you suggested. Thanks for all your help.

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Fri Jul 03, 2015 11:10 pm

BlackSpinner wrote:
Do you have any tips or suggestions on how to deal with a dry nose and sore throat?
Dry nose needs more humidity.

Sore throat means you are mouth breathing (and that could be where your leak numbers are coming from) try an ace bandage as a chin strap to see if it helps.

The best lubricant to use is a nipple cream used by nursing mothers called "lanishol(?)" or something like that - it is lanolin based cream that has no petroleum products in it.
Thanks! I will use the chin strap that I was given and see how that goes. I also will adjust the humidity level, hopefully my nose will be less stuffy and dry.

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MarylandCPAPer
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Re: Beginning to think this is pointless...

Post by MarylandCPAPer » Fri Jul 03, 2015 11:13 pm

Is there any way you can switch to an Autoset machine? I'd ask, tell the dr. and the DME of the problems you having, and tell them others have mentioned Autoset / self-titrating models of the same machine and that you may need the Autoset feature, since you are having trouble at a fixed pressure. I didn't realize you didn't have the same machine I had. Since you only usually get one machine per 5 years paid for by insurance or Medicare, you definitely want the best machine you can get long-term. Even short-term, it doesn't sound like the straight CPAP machine is working out well for you.

You might want to post the full model of the machine you have in the title of a new post, to get feedback from others familiar with that machine, and put links to past threads so people can follow your history. Good luck, it will get better!!

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Have also used Opus 360, Swift LT for Her, Optilife, and Breeze Nasal Pillows masks.
Started CPAP 12/18/09 Pressure 13. Changed to APAP 1/18/10, Pressure 10-16. 4/2014:Switched to AirFit P10 mask. PR System One REMstar Auto Series 550 with A-Flex for 5.5 years. 7/2015 to present: AirSense 10 AutoSet FOR HER. Range: 10-20

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Sat Jul 04, 2015 12:11 am

MarylandCPAPer wrote:Is there any way you can switch to an Autoset machine? I'd ask, tell the dr. and the DME of the problems you having, and tell them others have mentioned Autoset / self-titrating models of the same machine and that you may need the Autoset feature, since you are having trouble at a fixed pressure. I didn't realize you didn't have the same machine I had. Since you only usually get one machine per 5 years paid for by insurance or Medicare, you definitely want the best machine you can get long-term. Even short-term, it doesn't sound like the straight CPAP machine is working out well for you.

You might want to post the full model of the machine you have in the title of a new post, to get feedback from others familiar with that machine, and put links to past threads so people can follow your history. Good luck, it will get better!!

Thanks for the suggestion. I think it's still to early to give up on this machine. The pressure isn't bothering me anymore. It's really. Just the whole symptoms from the sleep deprivation that is bothering me now. I will give it awhile longer and see how it goes.

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MarylandCPAPer
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Re: Beginning to think this is pointless...

Post by MarylandCPAPer » Sat Jul 04, 2015 12:20 am

I'm not sure what your arrangement is with your DME and insurance, but I would check ASAP to find out what the policy is on returning machines. I'm not sure they ARE returnable. I think it is likely you are going to need an Autoset machine sometime in the next 5 years, if not now. Unless this is a rental and you can return the machine shortly in exchange for another machine, you may be stuck with it until the insurance will pay for another machine (5 years), unless you are willing to pay for a machine out of pocket in the future. The sooner you address this question of whether you can return this machine and get an Autoset model, the better.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Have also used Opus 360, Swift LT for Her, Optilife, and Breeze Nasal Pillows masks.
Started CPAP 12/18/09 Pressure 13. Changed to APAP 1/18/10, Pressure 10-16. 4/2014:Switched to AirFit P10 mask. PR System One REMstar Auto Series 550 with A-Flex for 5.5 years. 7/2015 to present: AirSense 10 AutoSet FOR HER. Range: 10-20

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mzdawn74
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Re: Beginning to think this is pointless...

Post by mzdawn74 » Sat Jul 04, 2015 12:58 am

MarylandCPAPer wrote:I'm not sure what your arrangement is with your DME and insurance, but I would check ASAP to find out what the policy is on returning machines. I'm not sure they ARE returnable. I think it is likely you are going to need an Autoset machine sometime in the next 5 years, if not now. Unless this is a rental and you can return the machine shortly in exchange for another machine, you may be stuck with it until the insurance will pay for another machine (5 years), unless you are willing to pay for a machine out of pocket in the future. The sooner you address this question of whether you can return this machine and get an Autoset model, the better.
Why do you think I need an Autoset machine?

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zoocrewphoto
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Re: Beginning to think this is pointless...

Post by zoocrewphoto » Sat Jul 04, 2015 1:19 am

mzdawn74 wrote: Once again you are totally right. I am going to try and work on my level of patience, but it's like the "rug" is being pulled out from under me! Thank you...
Don't beat yourself up. It is completely normal to be impatient when you finally have a solution and want it to work. I actually felt good after my titration, so I had dreams of wanting my cpap machine while I waited for my followup appointment. I was so impatient, waiting for that appointment, and then the DME appointment. I was so excited to get my cpap that I brought it home and took a nap with it. The next 6 weeks were up and down as I had some good nights, one blissful night about 2 weeks, and mostly a lot of problems as the mask was too big (even though size small), and I was having a ton of leaks. I knew it was the right mask as it was the same type as the titration (no leaks that night). So, after some help here, I found a new DME and got smaller headgear which fixed the too big problem and cleared up most of the leaks.

I still have some bad nights here and there 3 years later. But overall, even a bad night with cpap is better than my previous "good" nights.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?