Will it ever get better?

[Rosebud]

Hello. Let me introduce myself. My name is Rosie. I just got my cpap on 2/24, and have not had a good nights sleep since! I have a new mask as of yesterday, and thought last night that it worked out better for me, but tonight...not so much. I went to bed @ 9:30, and here it is 3 hours later, and I still have not slept. I have a really hard time "catching up" when I first put it on, and even once I do, it's just not feeling right. To make matters worse, I was still wide awake when it ramped up to 8, and apparently that is too much pressure for when I'm awake. Can anyone give me any pointers on what I can expect? What is normal, and what should I be concerned about? I feel like I'm filling up with air, and as a result will open my mouth to "let off some steam", but I know I'm not supposed to do that. At this point, I'm assuming I'm hurting my compliance, but hey, I just want to get some sleep!!!

Thank you all for listening. Hope I wasn't too long-winded...blame it on the high pressure...I'm full of "wind"!!

[Kiralynx]

Rosie,

You can help us help you by clicking on the User Control Panel and filling out (in type, not icons) your mask, your machine, and include your pressures.

It's hard to help if we don't know what you have to work with!

[Rosebud]

Where is the User Control Panel? I'm new to this posting thing...please bear with me.

[rested gal]

Hi Rosie,

Welcome to the board!

What is the full name of the machine and mask you have?

You don't have to register on this forum unless you want to. You can post as much as you wish as a "guest" and that's perfectly all right.

Registration is free, though, and gives you a "User Control Panel" (that's not available to unregistered "guests") where you can go into your "Profile", and fill in the "Edit Equipment" boxes (preferably as "text", not "image".) After you do that, the names of your machine, mask, etc. will always appear at the bottom of your messages. It helps people to see at a glance what equipment a person is using...they can often help you better then.

You mentioned, "I have a really hard time "catching up" when I first put it on, and even once I do, it's just not feeling right." By "catching up", are you talking about feeling as if exhaling is difficult? Or that your breathing and something about the way the machine is blowing air feels out of sync? Again, would be helpful to know exactly what machine (brand and model name) you're using. Name of machine will be written on the top usually. Probably a name like:

Respironics REMstar Plus M series
or
ResMed S8 Escape

Name of mask is often written on the back of the headgear strap.

Hang in there, Rosie. Plenty of people will try to help you here, once we know what equipment you're using.

In the meantime, some reading material to help you get sleepy... and help you understand more about all this "stuff"...
LINK to Mile High Sleeper's great information resource for cpap users.
http://www.smart-sleep-apnea.blogspot.com

[ozij]

Hi Rosie,
Welcome to the forum.
Let start with first things first: Yes, it will get better. And while some people do respond to CPAP therapy immediately, many of us are here now because we were there then.
4 years ago I cringed when I felt my machine move up from 5 to 6 to 7 (at automatic machine). I could nor for the life of me understand how people could get used to more. But I did get used to more. I still need relatively low pressures - and I sometimes I have to check the vents on my mask to make sure the system is working.

The first weeks - before I found the right mask and the right pressure were harrowing:
The noise
The smell
The touch of plastic on my face
The headgear cutting my ears
Those drops of condensation (I learned they're called rainout)
That stupid hose jerking the mask away
The cold air hitting my arm and sheets
The carpet burns around my mouth

They all have different solutions - and the majority are not "grate your teeth and bear it" solutions.
Here are Rested Gal's links to hose management - I started out with a picture hook on the wall, and a shoestring (literally) .
viewtopic.php?p=89536#p89536

So, to quote jnk on another thread - pull up a chair, make yourself comfortable, and join the party. A sense of humor is not mandatory, but it helps.
If you register to the forum (you don't have to) you can create a profile (in the user control panel) in to which you add the exact details of your equipment - machine, humidifier, mask, (they get attached to each post you make) and it helps us give you better tips when we see those things, in words; Your pressure or range of pressures as part of the text you can add is also a great help.

Do you use reading glasses? You'll need them in the next few days. There are many many helpful and informative links in the first post of the first thread viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html, and in in the yellow light bulb on top.

There are also many people willing to help - and no stupid questions on this forum.

It will get better, and you'll learn how to make it better for yourself.

Good luck, Rosie.

O.

[Rosebud]

My machine is a ResMed S8 Escape, w/a Mirage Swift LT mask. Hope that helps.

I'm sure I will register at some point, but hopefully when I'm awake. I'm already getting the warm fuzzies just knowing I'm not alone!

That "catching up" feeling...like I'm out of breath, winded, I guess. It usually goes away once I take a few deep gulps of air, but tonight I could not get my nasel pillow right, felt like there was some leakage, and by the time I got it right, my pressure was up to 8. Which brings me to this...I left it on when I gave up and came to the computer in desperation. Should I expect to be able to go back in there and fall asleep to an 8, or turn it off and try again tomorrow night?

Thanks again for the encouragement. God love him, my dear husband can help me get into my gear and tuck me in, but he doesn't understand even a little bit, so it's good to know you gals are here for me.

[ozij]

I alway turn my machine off when I get up.
You can use the ramp option on your machine, which is supposed to move the pressure up gradually, giving you a time to settle down. Some people will tell you it's not necessary at your pressure - but if it helps you (like training wheels on a bicycle) go ahead and use it. You don't have to expect yourself to fall asleep at 8 cms/h2o at this point -or at any point, for that matter; that ability will come on its own.
O.

[Rosebud]

My ramp is set for 45 minutes, and most nights that's enough, but I didn't know I could back it back down once it's already at full pressure. When I got this machine, I was told that once I turn it off, the next time I turn it on it will think it's a new day. Whatever that means.

[fitchypoo]

Rosebud, the "catching up" feeling was the worst of it for me, too. I know exactly what you're describing. The problem is, you're trying to exhale to zero pressure, and you can't do that comfortably with your machine turned on. Inhaling deeply and exhaling for all you're worth won't do the trick. What I found most helpful was to concentrate on taking very,very slow and shallow breaths until I could relax enough to fall asleep. You may have a few more difficult nights, but it will get better. Now I don't even bother with the ramp; gimme 14 and I'm out like a light!

Don't give up!

[jda1000]

Hi Rosie -

there's a big variation, it seems, in how people adapt to CPAP...it's pretty key for all, though, to stick with it. See if you can find a clinical manual for your machine; I have a ResMed Autoset II, which I suspect is similar, and knowing how the machine works is helpful.

Working out hose management was important, too - I initially found the hose more irritating than the mask.

Try other masks, if you can.

Read the posts on sleep aids, too. I use AmbienCR more than I'd like - nearly every night, which gives me pause - but by the time I got my diagnosis and my CPAP gear, I couldn't take any more sleeplessness, and after a couple months, I'm still recovering sleep - as near as I can tell.

I've found it helpful to scan posts here, too - there's a lot of excellent advice available from people who know their stuff.

Good luck!

[ozij]

My ramp is set for 45 minutes, and most nights that's enough, but I didn't know I could back it back down once it's already at full pressure. When I got this machine, I was told that once I turn it off, the next time I turn it on it will think it's a new day. Whatever that means.

I assume the DME is referring to gathering proof of your compliance. I don't know Resmed's well enought to tell you anything about that might effect your reimbursment - someone else will respond to that - but there's no problem about using the ramp buttion any time you wake up - that's what it's there for.

O.

[rested gal]

Rosie! Ya done good! You registered, got your machine and mask listed, and you're still here.

At any point during the night, you can hit the Ramp button and the machine will drop right back down to a low pressure and do the 45 minute buildup to " 8 " again. So, if you need ramp to start over again and again while you're using the machine, just press the ramp button again.

Since you're still in your first 30 days of having received a "cpap" machine, now's the time (before the first month is over) to do this...if you want to:

I'd go back to the DME (durable medical equipment store) and ask them to swap the Escape they gave you for one of these machines:

ResMed S8 Elite II with EPR and "easy breathe technology"
or
ResMed S8 Elite with EPR

Both those machines are "CPAP" machines. Either of those machines will fill your doctor's prescription for "cpap."

Both those machines have "EPR" (expiratory pressure relief) which means breathing out with them will be MUCH easier than trying to breathe with the Escape the DME gave you. The Escape does not have "EPR", so when you are up at a pressure of 8 , you are having to also breathe out against 8 .

Either of the two machines with EPR would let you set the pressure relief for exhaling at 1, or 2, or 3 cm less pressure.

If you set EPR for "3", then even when the machine was blowing 8 at you, you would exhale each time against a pressure of only 5. Much easier to breathe out against. All night long.

All three machines shown in the picture below are "CPAP" (which is what your doctor ordered.) The DME would rather give new people the cheaper model. They make more profit. But now that you know there are choices of "CPAP" within that brand, I'd go back to the DME and ask to swap for the Elite II, or the Elite.



Here's why it's so important to do the swap before the first month is up. The present DME will be much more likely to try to please you in the beginning. If they won't swap with you, there's always the chance you might just give them their machine back, say, "No thanks, this isn't the machine I want" and take your business elsewhere.

Other DMEs would welcome you as a customer right now. But as the months go by (the rental months that your insurance will pay for) there would be less and less profit for a different DME to take you on as a new customer and gave you a new machine. The first DME would have already received a big chunk (months of it) of the total CPAP rental your insurance will pay. The second DME would get only whatever number of months rental was left according to your insurance, even if they gave you a new machine.

So, now's the time to get your present DME to take back the Escape, and give you an Elite or...preferably...an Elite II. If the DME won't do that, find out from your insurance company what other DMEs in your area are available to you. You can bet, if you have choices, there will be a DME who would love to have a new customer in her first or second month of cpap rental and would say, "Certainly, Ms Rosebud...we'll be happy to get you an Elite II."

If your present DME balks and you really want to stay with them, contact your doctor and tell him/her that you're having a great deal of difficulty breathing out with your cpap machine. Tell him you really, really want to do this therapy but you're having such a hard time exhaling against the pressure. Tell him you've found out (don't tell him you found out on the internet!! ) that there's a model that's the same brand CPAP but gives some pressure relief for exhaling. Ask the doctor if he/she will have his office call the DME and have them give you the Elite CPAP instead of the Escape.

Most DMEs want to keep the doctor happy for sure.

Good luck, Rosie... keep asking questions!

[TheDreamer]

It get's better slowly....I wished it were instant, but its small things that I've noticed.

Like I didn't plan to be up now....but this is fake patty's day weekend in a college town...so I guess being woke up by a drunk, and not being able to get back to sleep is normal....except that it wasn't. Before CPAP, I'd have no trouble going back to sleep (which is what I would want to do all weekend...) Now I'm feeling awake enough that I can't get back to sleep. Plus, the drunk is still out there. Actually, I don't think I would've gotten out of bed before.

When I got my machine, I was given the option of using ramp...which I tried for the first two nights. I found it annoying, because I would be stuck awake waiting for it to come to full pressure before I could fully adjust to pressure and sleep. So, I stopped using it. If the ramp hadn't been a 45 minute transition from 4 to 7, it might have been more helpful (at first). But, 45 minutes was too long. There is some adjustment time most nights to remember how to breath with it on, but it isn't that long. Its mostly a process of getting myself to breath normally again with the pressure and distracting myself from the noise without having my mind too busy to let me sleep. When I first put the mask on its usually too rapid and short breathing....and then, sometimes, to the other extreme.....before I stop thinking about it and relax.

I forget when exactly, but there was a point where I couldn't tell that there was pressure. The RT says its normal, she gets lots of patients that come in saying their machine has stopped working right, because the pressure didn't feel strong anymore. Sometimes, I'll make my mask leak intentionally to reassure myself that its on, etc. For me, it was waking up one morning...and it just felt like the pressure wasn't there anymore, until I started taking the mask off....

OTOH, I have a Respironics, so the exhale relief is called C-Flex. I was prescribed 1-2 and, with Respironics, the RT sets it either to be on (only adjustable in level of 1-3) or off (and not available). But, I went into the RT mode and turned it off once.... It felt weird...and then I woke up feeling like I hadn't been breathing (later through software I saw that my AHI was 9.x for the session without C-Flex)....I suppose given time, I might have adjusted to not having C-Flex. But, I chose to go back to sleeping and breathing throughout the night.....

Also, right now I am take a supplement for sleep.... 1mg of melatonin. I've thought about stopping and seeing if the sleep through the night without waking change that started happening (instead of ever 2-3 hours to go to the bathroom)....would stop. Since I would also sleep through the night when I have taken stronger sleep aids before CPAP....

Though allergy season is just around the corner, so soon I'll be taking a low-sedating antihistamine before bedtime as well.

Plus before CPAP, I would still have to get up during the night to use the bathroom during allergy season...or even if I took 3mg of melatonin before bed.

The Dreamer.

[SharkBait]

I'd go back to the DME (durable medical equipment store) and ask them to swap the Escape they gave you for one of these machines:

ResMed S8 Elite II with EPR and "easy breathe technology"
or
ResMed S8 Elite with EPR

When I see a DME has given a new patient a machine without EPR / C-Flex / exhale relief, I just want to scream.

[Ms Piggy]

Is a ramp time of 45 mins a bit excessive? assuming I am right thinking that the ramp time isn't really therapy time re the lower pressure, and would it even record any events you might have if you fell asleep before the 45mins was up?

I think you will get used to not using ramp at all, I think that is the case with many of us here. but guess you will have to ask your "experts" at the clinic.