New, confused and overwhelmed

[FamilyNature]

I don't even know where to start ...

I'm 37, with 4 young kids and recently diagnosed with moderate apnea.

I've been tired for years -- not surprising with young kids. I started to think something was wrong when I had repeated cases of pneumonia (for a while, every cold turned into pneumonia); my very close friend was diagnosed with severe apnea (90 AHI!) and my symptoms sounded similar (although much less severe); and finally, my youngest stopped breastfeeding earlier this year and I expected to feel much less tired once she stopped waking me up a couple of times a night but it basically made no difference to my mood/energy. I went to the doctor and after a couple of blood tests a sleep study seemed like the next thing to do.

I have also struggled with teeth clenching for years. For many years I didn't know what it was because for a long time my first and only symptom of clenching was ear trouble (temporary hearing loss, pressure in my ears, a weird feeling of wind in my ears). Eventually I started getting headaches and neck pain and my chiropractor thought that it was clenching. A trip to the dentist confirmed that it was (cracked teeth and bite marks in my cheeks). The dentist was the one who told me that my ear trouble was likely a result of clenching -- my ear trouble had stumped my family doctor and hearing experts. An oral appliance was recommended. I knew that I was going to have a sleep study so I was waiting to hear the results before I invested in an oral appliance. I don't understand the connection between apnea and clenching (other than they are both sleep disorders) but it seems to me that in retrospect, they both started for me around the same time -- which was sometime after I had kids.

So, I had the sleep study and the results (which I'm still working on deciphering and understanding) were this: AHI on my back was 21.2 and on my side was 6.7. Minimum oxygen was 86 and the mean oxygen during the study was 94.1.

My friend with apnea told me about this forum and here I am.

I've been lurking for a week or so, trying to get a handle on all the lingo and trying to prepare myself for my first night on a machine. I picked up my loaner yesterday and left the office with many questions.

From reading this forum and talking to my friend, I had expected to get an APAP machine but they sent me home with a CPAP. The only explanation being that it was what the doctor prescribed. I had no say with regards to what kind of machine I got as a loaner.

I am also confused about the pressure. My machine is set at 7. The technician who set me up just said that it was what the doctor told them to do. I asked how they determine the pressure and she told me that the doctor looks at your sleep study results and just guesses (really? is that true?). I feel like my apnea comes and goes a bit. I will have a couple of weeks when I will feel okay and then a peroid of time when I am completely exhausted so I don't feel confident that 7 is the right number for me all the time.

The person who gave me the machine also told me that I should have already had a second sleep study booked within my 30 day trial period to see if the machine is working for me. I don't have one booked and the sleep clinic never mentioned this to me. I'm going to call them today but is it normal to have a second study after you get a machine?

And finally -- I think all of this sucks! I'm really not crazy about the idea of sleeping with a machine for the foreseeable future. I suppose if I notice a dramatic difference in my well-being I will just get used to it. I realize that many people have apnea much worse than me, so as I feel sorry for myself I also think that I'm being a cry-baby. *sigh*

Oh, and rain-out ... can someone point me to some info on preventing rain-out? I have a hose cover but still woke up several times with water rolling down my cheeks (also not sure about the mask I am using because it was leaking a bit throughout the night).

I have many, many more questions but this is probably enough for one post!

Suggestions and insight are greatly appreciated.

[Madalot]

Welcome to the forum!!

I'm going to let some of the more knowledgeable and experienced people here try to address your questions, but I wanted to say hello and welcome you. I see you're in Canada. I am not familiar with how the studies, DME's and doctors do all this in Canada.

But I'm sure some of the veterans will pop in here and help you out!

[robysue]

I have also struggled with teeth clenching for years. For many years I didn't know what it was because for a long time my first and only symptom of clenching was ear trouble (temporary hearing loss, pressure in my ears, a weird feeling of wind in my ears). Eventually I started getting headaches and neck pain and my chiropractor thought that it was clenching. A trip to the dentist confirmed that it was (cracked teeth and bite marks in my cheeks). The dentist was the one who told me that my ear trouble was likely a result of clenching -- my ear trouble had stumped my family doctor and hearing experts. An oral appliance was recommended.

Get the night guard for the night-time teeth grinding. It will make a big difference with the ear problems and the TMJ headaches as well as help preserve your teeth and cheeks. I've been wearing night guards for 25+ years and absolutely hate to sleep without one.

So, I had the sleep study and the results (which I'm still working on deciphering and understanding) were this: AHI on my back was 21.2 and on my side was 6.7. Minimum oxygen was 86 and the mean oxygen during the study was 94.1.

Sounds like there's a significant positional component in your apnea. In addition to CPAP you may want to work on learning how to NOT sleep on your back if that's one of your favorite sleeping positions. But even on your side your AHI puts you (barely) into the mild sleep apnea range, and since you've got daytime symptoms, CPAP is worth a real honest try because it could make a significant difference in your quality of life.

My friend with apnea told me about this forum and here I am.

Welcome to the forum.

I am also confused about the pressure. My machine is set at 7. The technician who set me up just said that it was what the doctor told them to do. I asked how they determine the pressure and she told me that the doctor looks at your sleep study results and just guesses (really? is that true?). I feel like my apnea comes and goes a bit. I will have a couple of weeks when I will feel okay and then a peroid of time when I am completely exhausted so I don't feel confident that 7 is the right number for me all the time.

The person who gave me the machine also told me that I should have already had a second sleep study booked within my 30 day trial period to see if the machine is working for me. I don't have one booked and the sleep clinic never mentioned this to me. I'm going to call them today but is it normal to have a second study after you get a machine?

This sounds weird to me: From what I've read both here and elsewhere, the pressure needed to keep your airway open is NOT correlated (at all) to the severity of your apnea. Rather it seems to be based on the physical structure of your airway and the muscles and other tissues that are around the airway. Some folks need more pressure to keep things open because the muscle/tissue is more resistant to being pushed out of the way by the positive air pressure blown in by the CPAP machine. Other people need very little pressure because that's all it takes to keep the airway from collapsing.

As for the second sleep study---is it possible they want you to do a titration study during your 30 day trial period so that a sleep tech can properly determine what your pressure level is? During a titration study, you're all hooked up with the wires again, but you start off with a CPAP (usually at 4cm) and the sleep tech adjusts the pressure upwards when you start having events. There's an algorithm they follow and after adjusting the pressure up, they typically do wait a while to see if your air becomes more stable and you quit having events at that pressure. If you continue to have events, the tech bumps the pressure up another notch.

So yes, I'd suggest setting up a second sleep study, but I'd also ask that it be a titration study to determine what your pressure should be set at.

As for how you're feeling---it could very well be that on the days where you feel ok, the pressure setting of 7cm is working for you. But on the days where it's not, the pressure level could simply be wrong. It may be that you need more pressure (all the time) in order to not feel exhausted. That's why you need that second study to be a titration study.

And finally -- I think all of this sucks! I'm really not crazy about the idea of sleeping with a machine for the foreseeable future. I suppose if I notice a dramatic difference in my well-being I will just get used to it. I realize that many people have apnea much worse than me, so as I feel sorry for myself I also think that I'm being a cry-baby. *sigh*

I've been struggling with this myself. I really do think there's a grieving process that some of us go through: In one way or another being diagnosed with a chronic health problem forces you to confront your own mortality at some level and it is disturbing. And the learning curve for dealing with CPAP and sleep apnea is real. So between the two things, I do think some people (myself included) go through a grieving stage for our old life before we can completely embrace our new one. Here's hoping that you DO notice a DRAMATIC improvement in your well-being. Many folks do---sometimes it's pretty quick (a few days); more typically it takes a few weeks to start feeling at least a bit better. If you're feeling worse or no better after using CPAP every night all night long for a month or more though, I think it's time to call the doctor's office back and tell them you need to speak to the doctor or one of his nurses or PAs about the fact that you're not adjusting and see what they say about what's going on.

Oh, and rain-out ... can someone point me to some info on preventing rain-out? I have a hose cover but still woke up several times with water rolling down my cheeks (also not sure about the mask I am using because it was leaking a bit throughout the night).

Things to try for rainout:

• 1) Turn the humidifier down a notch or two.
  
  2) Make sure the CPAP unit is BELOW your head level: Water runs down hill and you don't want your face to be the lowest point in the system.
  
  3) Use a hose cozy to help keep the air in the tube a bit warmer: Warm air holds more moisture than cold air. If the air gets sufficiently cold between when it ran through the heated humidifier and your nose, rainout can happen.
  
  4) Consider hanging the hose above your head: Again, this allows water to run back into the tank instead of your nose.

As for mask issues, let us know what mask you're using and you might get tips on how to fit it a bit better. Or you might want to call the people who gave you the loaner equipment and demand a different style mask to see if a change in mask style will help with the leak problems.

And a final tip: you can go to the User Control Panel (top left of the cpaptalk window) and edit your equipment. (Use TEXT not PICTURES). That way the equipment you're using will show up at the end of every post and that information helps others give you troubleshooting ideas that are tailored to your equipment.

Good luck on your new (and not entirely welcome) adventure.

[Hawthorne]

It is quite normal, in Ontario to have that second sleep study for titration purposes.

Like you, I was not told I should have it and I had to call and book it myself. I did not get a machine until after the second (titrarion) study though.

You need to qualify in Ontario for an Auto. I think the Assistive Device Program( which should be paying fo 75% of your machine) requires a pressure setting over 10 cm to qualify for an auto. Your Provider should do that paperwork for you. If you have extended health, they may pay the remainder.

A Pro is pretty good though because it is fully data capable. You can get software for your computer that will read your card. Your Provider will not sell it to you. You will have to buy it yourself - out of pocket. It is available at cpap.com for $99. Any memory card reader will read the card. I use the one on my printer. Your Provider should be able to read the data on your card but will probably only do it every few months. You will be better off getting your own software and you can check every day if you want to.

Whatever you do, don't let them stick you with a Plus model. That will only tell you how often and how much you use it.

You might be able to pick up an auto ( maybe slightly used) on cpapauction.com. That would be good to check out your titration yourself once in a while. Or, if you buy yourself an auto and find, as I did, that I do better in auto mode, with a narrow range, use the Pro as a backup machine and use the auto as your regular machine.

If you buy an auto on cpapauction.com get the same brand of machine (PR System One) so that you can use the same software, sould you choose to get it. Also, if you buy on the auction site be sure to ask if they will ship to Canada via the POSTAL SERVICE and try to get a shipping cost up front before you bid. Check feedback for a seller!!

This info about the auction site is for future reference . Just thought I would include it.

Welcome!

[cflame1]

A Pro is pretty good though because it is fully data capable. You can get software for your computer that will read your card. Your Provider will not sell it to you. You will have to buy it yourself - out of pocket. It is available at cpap.com for $99. Any memory card reader will read the card. I use the one on my printer. Your Provider should be able to read the data on your card but will probably only do it every few months. You will be better off getting your own software and you can check every day if you want to.

Hawthorne... not sure if what they've got listed is right or not, but it appears that the machine that's listed in the OP's posts is a classic/tank... so would need a smart card reader instead of a memory card reader.

[Hawthorne]

Thanks for catching that cflame1!

I expect that she has chosen the wrong machine from the list, since the one she did pick is no longer made (2 models ago) and seh is recently diagnosed.

FamilyNature - Please check out your machine. It should say right on the top of it, what it is. It helps us to help you more if we know exactly wha tmachine you have.

[ChelseaChestnut]

Welcome to the forum! I am new to this also, been battling it for about a month. I have tried 4 different masks to finally settle on the one I am using now. I have good nights and bad nights. The best advice I can give you....take it one night at a time. Don't worry if you have a bad night and don't use it or have to give up an hour or two into it. Even if you only use it for 2 hours, that's 2 hours of treatment you weren't having in the first place. Last night I only used my machine for about 3 hours, the night before that, 6 hours. I 've even had nights where I went to sleep with my mask on and then woke up to find out I had taken it off, with absolutely no memory of doing it! Eventually, your body will get used to this. Try to tackle one problem at a time. Don't be afraid to ask questions here, there are lots of people on this site that have years of experience and they have lots of great info and suggestions. Good luck!

[FamilyNature]

Thank you for all the responses. This is very helpful. Here are a few more details:

The mask I'm using is in my signature now. It's leaking at the sides -- sort of at either end of my mouth, I think. I'll have to fiddle with it a bit more tonight. Last night I was trying to deal with the moisture dripping out and the leaking while in the dark and half asleep! I'll try it for one more night before I call the company. They said if I had any problems at all to call and they'd help me sort them out.

The machine in my signature is the correct one. It is a loaner machine. It's a free 30 day trial and yes, it is an older model. Like I said, I had no say in what machine I got as a loaner. If and when I decide I need a machine beyond the 30 days, I'll have to choose which one I want. I like the idea of having something that is data capable. What data will it tell me exactly?

Is an APAP more expensive than a CPAP?

[Emilia]

A couple of tricks that might seal those two minor leaks are to use a mask liner, or try taking a Mack's ear plug silicone disk and roll it into a long piece to then use enough of it to seal those two spots. Another suggestion is to take a piece of moleskin and attach it to the mask at that spot....don't put adhesive on your skin!

The software will provide you detailed information on your therapy via graphs and data regarding your pressure, leaks, snores, and varying types of events. It will allow you to view this and see when and where the issues are in your overnight therapy. It empowers you to control your own therapy and make adjustments as necessary. Being an advocate for your own health and becoming knowledgable about how this works will make you an empowered patient! A good doctor will appreciate this!

Here are the data capable machines listed on our host's site: https://www.cpap.com/cpap-machines/adva ... e/data.php You'll note that the first three machines listed are the most popular, too.

[Hawthorne]

APAP is more expensive than a CPAP but there are data capable CPAPS. I mentioned the PR System One Pro, which is fully data capable.

The PR System One Auto is also fully data capable. I did mention that, in Ontario, the Assistive Devices Program will pay 75% of a machine/humidifier and mask BUT you must be titrated at 10 cm plus and your sleep doctor must write the prescription for an auto.

These machines are in the Philips Respironics line. There is also the Resmed brand. In that you want an Elite or an Autoset for a fully data capable machine.

There are others but these brands are the most popular. In Ontario, the Fisher & PayKel may also be available. It was when I got my first machine 8 years ago. I'm not sure which are data capable in that brand.

Fully data capable machines will tell you when you had events (apneas, hypopneas, flow limitations, centrals, etc) as well as your leak rate every night if you have the software. It sounds like your mask may be leaking quite a bit so this might be something you want to know.

When you go for your titration, ask to try a different mask. Was there a reason they gave you a full face mask with your trial machine? Your current mask may not be the right size even.

I am very surprised that you were not given an auto for a home trial. That would have made more sense and you may have had an idea of your titrated pressure even before the titration sleep study. That is only one night. A trial auto would have given more data.

Anyway, hope that helps a little. You will be on information overload soon!


Try to read all that you can on this forum, especially what you read by clicking the yellow light bulb!

Emilia was posting as I was typing. Very good suggestions there too!

[FamilyNature]

When you go for your titration, ask to try a different mask. Was there a reason they gave you a full face mask with your trial machine? Your current mask may not be the right size even.

They were going to give me the mask that just covered my nose and I tried it at the office but I really didn't like it. The full mask seemed more comfortable and seemed easier to tolerate. Plus, I'm pretty sure that I breathe through my mouth at least some of the time. They did send me home with both the full face and the nose mask. I tried the nose mask again when I got home -- I tried them both and the nose one just felt too weird.

FN

[SleepyBobby]

Check out the book "how to tolerate cpap therapy for your sleep apnea"