feel like giving up on cpap... Update!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Madalot
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Re: feel like giving up on cpap

Post by Madalot » Tue Feb 05, 2013 12:00 pm

yoyoyomonica wrote:Thanks for this post. So u tried other machines and masks. Do the DMEs work with u on this or do u have to purchase these machines. I dont know the difference between bipap and cpap or APAP. All I know is that I want to sleep well and feel better. that is all I want. I am gunna call my DME today.
In MY situation, I failed cpap within 30 days. I kept bitching to the DME & my doctor that I felt worse, so they did another overnight oximetry and found that I was still desatting so they increased pressure. More bitching and another overnight, they determined that I was having MORE trouble at the increased pressure and decided I needed a bipap (bi-level - separate inhale/exhale pressures).

Again, MY circumstances found that while I liked the bipap, I still wasn't feeling all that great AND I noticed that the bipap wasn't always switching back to the inhale pressure when I breathed in. Took me WEEKS to get anybody to listen, but once I did - they realized that my breathing is too shallow for the bipaps to recognize -- thus I was switched to my current equipment -- a Trilogy 100 Ventilator.

With the cpap & bipap, it was a rent-to-own deal, but I failed cpap within 30 days, so I never made a co-pay on that. Maybe they should have billed me, but they didn't. It took me OVER 30 days to convince them about the bipap, so I did make ONE rental payment on that.

The Trilogy is a different "ball of wax" and is a perpetual rental, much to my financial dismay. But it is what it is.

I got very lucky on my mask and the second one I tried worked very well for me. I've tried many others over the last 3+ years, but always go back to my F&P 431 Full Face Mask.

The point of my story is: It can and does take some people a long time to get everything dialed in correctly -- machine, masks -- all of it. Try to hang on until you can get there.

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Phil_in_CA
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Re: feel like giving up on cpap

Post by Phil_in_CA » Tue Feb 05, 2013 12:06 pm

From what MY DME said about the modem that was on my CPAP macine, the therapist can upload the data from the machine to their computer. If your machine is able to save your sleep data, then the therapist can upload that data, and (if the modem stuck onto your machine is like the one my DME put on mine) even adjust the settings on the machine!! Way too cool. At least they can see if you are using the machine enough to qualify to keep it (called "compliance data").

After the first month, my DME came and got the modem since I had only one night under 4 hours...

Technology moves forward, like it or not!

Relax, let this stuff (and you) get the kinks worked out... you will be better for it.

Phil
Boo and Pika! My constant companions.

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yoyoyomonica
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Re: feel like giving up on cpap

Post by yoyoyomonica » Tue Feb 05, 2013 12:11 pm

Julie wrote:Hi - I've lost track of whether anyone asked this, but have you tried lowering (or raising) your humidity level to see if it helps the congestion? I can only use mine on the lowest setting and often not at all.

My nose is totally pinched off with the mask. BUT I am naturally congested because of allergies. I think the humidifier will help alot if I can get the nose unpinched. I have my humidifier at 2.5

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chunkyfrog
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Re: feel like giving up on cpap

Post by chunkyfrog » Tue Feb 05, 2013 12:16 pm

My hubby uses a Breathe-Right strip under his mask; I have used one when I had a cold.
It worked fantastic, and was worth the expense and the less-than-easy removal. (for me)
Next time, I may get the store brand--not quite as sticky.
I found that any mask which pinches my nose has that effect, hence the cloth mask.
Some of us don't have very rigid noses.
As for allergies, I have been taking the Sam's club loratadine for years--which has helped enormously.

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Last edited by chunkyfrog on Tue Feb 05, 2013 12:17 pm, edited 1 time in total.

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Pugsy
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Re: feel like giving up on cpap

Post by Pugsy » Tue Feb 05, 2013 12:17 pm

If you simply can't breathe through your nose most of the time due to congestion and you can't get it open with meds or spray then a nasal only mask (either over the nose or the pillows) is unlikely a workable solution.

Though I have known people (me included) who find that the humidified air going up the nose with the nasal pillows mask actually helped open up the congested nasal mucosa. Think about how the nose does immediately after a hot shower.

There was a forum member (he hasn't been back lately) who thought for sure that he would never ever be able to use a nasal pillow mask because he had a deviated septum and most always breathed through his mouth due to congestion. I finally talked him into trying it and low and behold he did great with it. Big game changer for him.

I think people who want to try any mask because they wonder about it...should at least try it. Never know but it might end up being perfect.

No mask should pinch the nose though...none. No mask should cause congestion or discomfort.
I get immediate and total congestion when I put on any over the nose mask. Takes maybe 2 minutes for it to happen and I know for sure the straps aren't too tight. It's the pressure of the mask on my turbinates that causes the congestion because the nose clears up immediately when I take off the nasal (over the nose) mask.
I know this because I tried a whole bunch of them during my titration study as well at the DME office.
So I won't be buying one...ever.
Heck even the slight pressure from my sunglasses causes same congestion. It doesn't have to be horribly tight to cause the congestion.

Play with the humidifier setting...some people need more added moisture and some need less.
But for sure alter the fit so that there is the least amount of pressure on the nose as possible and still maintain the seal.
Most of the time people tighten any mask way more than is really needed.

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Nooblakahn
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Re: feel like giving up on cpap

Post by Nooblakahn » Tue Feb 05, 2013 12:27 pm

Yeah. Your mask is to small.. that happened with my fist one during titration. They got me a bigger one and that helped

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yoyoyomonica
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Re: feel like giving up on cpap

Post by yoyoyomonica » Tue Feb 05, 2013 1:22 pm

I take zyrtec. been on it for about a year now. it helps with the drips and sneezing and watery eyes but not so much for the congestion.

I will get some nasal strips and try them out. Still waiting for the dme to call me back.
chunkyfrog wrote:My hubby uses a Breathe-Right strip under his mask; I have used one when I had a cold.
It worked fantastic, and was worth the expense and the less-than-easy removal. (for me)
Next time, I may get the store brand--not quite as sticky.
I found that any mask which pinches my nose has that effect, hence the cloth mask.
Some of us don't have very rigid noses.
As for allergies, I have been taking the Sam's club loratadine for years--which has helped enormously.

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xenablue
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Re: feel like giving up on cpap

Post by xenablue » Tue Feb 05, 2013 1:58 pm

I also have bad allergies, however I only use nasal pillow masks. The secret is to make sure your airways are clear and moist before putting on the mask. Once I start breathing through my nose and continue doing so, it never becomes congested during the night - unless I start mouth breathing.

However as soon as I take off my mask in the morning, the congestion returns - even if I take a Zyrtec or nasal spray.

I can't tolerate any nasal mask that sits across my nose or forehead.

Hang in there - it will get easier... and your AHI of 0.5 is execellent - I think you'll find it's a big improvement on your sleep study numbers, whether you FEEL better or not. You will eventually if you stick with it.

Cheers,
xena

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Sheriff Buford
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Re: feel like giving up on cpap

Post by Sheriff Buford » Tue Feb 05, 2013 2:12 pm

yoyoyomonica wrote: IF u are naturally congested can u use a nasal pillow.
I'm not sure what you mean when you say you are "naturally congested'. Do you mean you always have sinus issues... or you have a deviated septum (plugged nose)?

Sheriff

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yoyoyomonica
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Re: feel like giving up on cpap

Post by yoyoyomonica » Tue Feb 05, 2013 2:16 pm

Sheriff Buford wrote:
yoyoyomonica wrote: IF u are naturally congested can u use a nasal pillow.
I'm not sure what you mean when you say you are "naturally congested'. Do you mean you always have sinus issues... or you have a deviated septum (plugged nose)?

Sheriff
I dont know why but I am always stuffy. I dont know if I have a deviated septum. How would I find that out? is there a way to improve that? I just always breathe through my mouth.

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squid13
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Re: feel like giving up on cpap

Post by squid13 » Tue Feb 05, 2013 2:31 pm

You can see a ENT Doctor to have it checked and if your up to it you can have it surgically corrected if it's deviated. I had mine done in 1993 and I'm sure it's a lot easier now with newer methods.

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Uncle Peeler
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Re: feel like giving up on cpap

Post by Uncle Peeler » Tue Feb 05, 2013 2:48 pm

I know just how you feel. It took me months to truly accept the machine and the mask. My rebellion started on my second night at the sleep clinic, when putting on the mask immediately plugged up my sinuses, and I was unable to breathe. In my recent past I have scuba-dived, so I thought using CPap would be a breeze. Au contraire!

Luckily, I persevered and, now, one year later, I can't imagine being without CPap. Because I suffer allergies (such as, to dust) it's easy for my sinuses to clog, thence the full-face mask. I suffered day-long headaches, and these were descending into migraines, necessitating countless trips to doctors and chiropractors. Then, I got one of those contour, memory-foam pillows and, within a single day, all those problems disappeared. I'm not trying to diagnose you, but sometimes it's something simple. Of course, sometimes it isn't.

Since I've adapted to CPap, I've gone from three to four naps a day to none. I can't even nap if I try. I've lost weight, got tons more energy, I even seem to think better, and am back to my old self in making decisions.

I remember a couple of times, 'way back when, I got into trouble hiking. The one time I was caught in a bad snowstorm and got a little turned around, the other time I was on a trail in what passed for mountains in Ireland, and I'd badly twisted my ankle. It both cases, there was no out, no rescue, no benefit in giving up and sitting down, so I put my head down, kept my eye on the goal, and trudged (and limped) on, thinking, "right now I'm here, in an hour I'll be there, and in a couple more hours, I'll be safe and warm and drinking a delightful beverage".

That's you, right now. It's going to get better, a lot better, but for now you need to keep your head down; don't focus on right now, just focus on where you're going and how it's going to be.

You can do it; you're going to do it. Your doctor and support staff want you to succeed, and we're all here with you.

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Admiral_Schmidlap
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Re: feel like giving up on cpap

Post by Admiral_Schmidlap » Tue Feb 05, 2013 9:10 pm

yoyoyomonica wrote:I am day 6 into cpap treatment. and have no signs of improvement. And I think it is cumbersome. I sleep well with it on it is just alot of work for not helping me. But last night I was up till 2 am trying to sleep. had to take a klon at that time. Plus the cold air is hurting my tooth. And it seems like my nose is pinched. is this normal? I cant breathe through my nose. and the mask almost reaches my bottom lip. I am not having much leaking. I am washing my seal every day. and the other equipment once already. I am still trying to gather money or funding for the equipment. I guess I am just kind of depressed about all this. Still trying to digest things.

These are my issues....

Poor memory
Dyslexia
Depression
Bipolar
Anxiety
Agoraphobia
OCD
Fatigue
Chronic daily headaches
Migraine
HBP
High cholesterol
Epilepsy
Spinal stenosis and DGD
IBS
Gerd and ulcer and IBS
Sleep apnea

These are my numbers....

6 days
avg use 8 hours
pressure 9.0
leak 13 ml/min
AHI .5
Total Al .2
Central Al .0

Hi yoyoyominica,
I had untreated sleep apnea for over 10 years but finally decided to do something about it last November because things were not getting better. It has been extremely difficult getting use to this machine. I finally had my first night of sleep with the mask on just 4 days ago. It was only for about 90 minutes but I have finally gotten over that wall of fear. I slept with the mask on last night for just over 4 hours and when I woke up I had more energy than I can ever remember. My AHI during that time was a 4.5, down from over 70 during my sleep study. Do whatever it takes to make it work and keep posting here. This place saved me!

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zoocrewphoto
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Re: feel like giving up on cpap

Post by zoocrewphoto » Wed Feb 06, 2013 12:15 am

yoyoyomonica wrote: I cant breathe through my nose. and the mask almost reaches my bottom lip.
Can you explain this? DO you mean that the mask is not covering your mouth completely? If you are using the Quattro FX, that is a full face mask, and should cover your mouth, even if it is open. The lower seal should fit into the dent between your lower lip and chin.

Another mask you may want to try is one of the hybrid models. Pillows for the nose and still covers your mouth for mouth breathing.

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stage0
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Re: feel like giving up on cpap

Post by stage0 » Wed Feb 06, 2013 1:23 am

In addtion to trying the nasal strips ( which open only the nostrils); you can try to reduce any swelling in your nasal passages with a NetiPot. When my allergies kick my b. ; i kick back by using this product. You can buy it a any pharmacy.