Several issues

[DottyG]

I haven't been here in a while. I need to be checking in more often. I miss y'all.

Here's where things stand. I'm frustrated with some things. And, I need help on some others.

1) No one seems to care that I'm on this machine. DMEs, I mean. My Mom lives in another city. But, we had our tests done at the same place (near my parents' house). Not only did she get her results almost immediately (when it took me forever to get them to read mine), but she gets phone calls from the doctor checking up on her. And, her DME actually keeps in contact with her to see how things are going. She's already had the oxygen-testing thing on her finger - I've yet to get anyone to do mine. I haven't heard from my DME since they brought the machine out. Yes, I know I can call them. But, it irritates me that mine just dropped me - and Mom is getting so much personal attention. If hers were on my insurance, I'd be switching to it. Even with the distance away that it is. I'm having problems with my machine, and I need someone to help me.

2) I've been negligent about using the machine. Again, no one seems to give a darn that I have it, and I think that's made me complacent. I know - personal responsibility. But, it's hard to get motivated. Especially when I'm having issues with it such as the below.

3) I'm still taking my mask off during the middle of the night. I don't know why - I don't know when. But, I'm also turning the machine off, so there's a part of me that knows it's doing it. I got a knee bolster the other day, so now I'm able to sleep on my back. That's helped with the mask a little. But, I guess maybe it's still uncomfortable somehow, and I take it off? I don't know. But, why am I doing this?

4) Lately, I've woken up with a really dry throat. But, my nose is too wet. I can't change the humidity level on the machine, because that will throw one of the two even more out of balance. How can I regulate this and have both parts of my body happy?

5) I still snore - even with the machine and even on my back. It's like a deep throated type of snoring. I thought this was supposed to stop that. What's going on?

6) I'm still exhausted during the day. I could go to sleep right now, I'm so tired.

Help. I'm still not acclimated to this bipap thing.

[pmcall57]

Dry throat can mean you're breathing through your mouth, which means you're not getting therapy. Perhaps switch to a full-face or hybrid mask? Have you tried different masks?

Also suggest you stop waiting for others to follow up with you. They might, they might not, but in the end managing your health is up to you -- no one will care about you more than you do. You know that, just wanted to reinforce it. Well, you've taken a first step by posting here!

Those are my two suggestions, hope they might help you.

Pam

[harry33]

you can stop mouth breathing by taping the lips
turning CPAP off and removing mask during sleep is fairly common for new users, so be patient

have daytime naps using CPAP

[SaltLakeJan]

O.K. Dotty G.

You are feeling some natural emotions. It is almost like you were the only girl in the third grade who was not invited to the Birthday Party. It is hard to feel your problem isn't as significant as your Mother's. It hurts when you don't get the attention others are getting. BUT, the reality of the situation is that you are reacting to a situation (normal enough)However, when you are not acting on a medical condition that needs attention, you are hurting your self - Betcha you knew someone was going to come up with the 'ol lecture. Sorry 'bout that, but it has to be said.

Your Mother's situation is very unusual. Does she have some other chronic condition, or health problem that might warrant the attention her doctor and DME gives her? Could be she is a person who cannot take care of her needs without unusual support.

It may not give you any consolation, but the only interest my DME has in me is when I come for cpap masks - I represent one thing, $$$. I have had the experience of having several different sleep doctors. Not one of them has ever called me or even seemed interested in the problems I experience.

I don't know why you take off your mask during the night . . I can't answer that. I can tell you that you need to begin again with your sleep therapy on a regular basis. Don't let chronic medical issues develop because you feel left out because you aren't getting the attention your mother gets. The members of the forum will willingly support you if you will start a thread listing your problems.

How about this? If your Dr or DME isn't going to be a cheer leader for you, you will have to rely on the one person who will be with you forever - yourself. Start your apnea routine again, post on Cpap.com frequently. People here will encourage you, but the backbone has to come from you.

If you have a question I can answer, I'll try to be your Auntie Em, offer my lectures . . . woops I meant
to say suggestions. respond to you, so now you have me as a support person, yourself and Toto the Dog

You may have guessed we have a mutual interest in the Wizzard of OZ

Look forward to hearing from you . . The Good Witch AKA Jan

[DoninOrlando]

Hi Dotty,
I think most of your issues are related to the the mask not working for you. Not everyone is successfull with pillows type masks. I thing the Swift LT is very comfortable, and wish I could use it, but it does not work for me as my mouth opens in my sleep. I suspect yours does too. This could explain your dry throat, snoring, and exhaustion. If your nose is wet, too much moisture is reaching it. Although condensation can form in the mask, it can also come from your hose. What is your humidity level set at ? You can either lower the humidity, or insulate the hose with hose covers, or both. Also, make sure the machine is at a level below you so condensation runs back to it instead of to your mask.
Another contributor to some of your issues may be sleeping on your back. Although it seems easier with pillows, it can increase both apneas and snoring in many patients, including myself. You may want to find a mask that solves the possible mouth breathing and is easier to sleep on your side. Perhaps a hybrid or FFM will help.

[rosiefrosie]

If your still feeling tired, taking your mask off, and snoring you may need to have your pressure increased. It may be a good idea not to sleep on your back. Also if you have a dry mouth, you are most likely leaking air and may want to try a full face mask or as harry33 stated tape your mouth. I use the same mask as you do and need to tape my mouth shut. So, I would recommend that you call your doctor and your DME to see if they can help you through the issues that you are having. Also try placing your machine lower than the bed ( I have mine on the floor) and a hose cover to help with your rain out issues.

I wouldn't wait for them to call me, you need to give them a call. All DME's and Doctors are not created equal. You need to look out for yourself.

Hope this helps.

Rosie

[JohnBFisher]

... 1) No one seems to care that I'm on this machine. ... I haven't heard from my DME since they brought the machine out. ...But, it irritates me that mine just dropped me - and Mom is getting so much personal attention. ... and I need someone to help me. ...

Well, the first step to getting things straight is to admid you need help. And that's a lot harder done than it is for us to say it. So, good for you. You've recognized the first step. You might want to shop around for a Respiratory Therapist who can help. Don't be afraid to call and ask questions. Go visit a local A.W.A.K.E. meeting. You should find others in your area who can point you to an RT, who can make a difference for you.

... 2) I've been negligent about using the machine. ... But, it's hard to get motivated. Especially when I'm having issues with it such as the below. ...

Of course, you won't feel better unless you use and and straighten out the problems you have. If you are not getting the help you need locally, use this forum to get answers ... which is of course what you are doing. But yup. It is personal responsibility. We each must own the responsibility to see that the therapy meets our needs.

... 3) I'm still taking my mask off during the middle of the night. I don't know why - I don't know when. But, I'm also turning the machine off, so there's a part of me that knows it's doing it. I got a knee bolster the other day, so now I'm able to sleep on my back. That's helped with the mask a little. But, I guess maybe it's still uncomfortable somehow, and I take it off? I don't know. But, why am I doing this? ...

It's a real common issue. You can search this forum for solutions that people have. I've heard of people taping the machine to their face to make it harder. Even if you take it off, just go ahead and put it back on when we awaken enough to notice. Once you are adjusted to it you will tend to keep using it all night.

... 4) Lately, I've woken up with a really dry throat. But, my nose is too wet. I can't change the humidity level on the machine, because that will throw one of the two even more out of balance. How can I regulate this and have both parts of my body happy? ...

Sounds as if you might have your mouth open during the night and air is blowing through it. You might want to either try a chin strap or a full face mask. I finally switched to a full face mask. My RT noted that many people with BiPAP often need a full face mask.

... 5) I still snore - even with the machine and even on my back. It's like a deep throated type of snoring. I thought this was supposed to stop that. What's going on? ...

I still snore, but not as hard as before. However, the apneas and most of the hypopneas have ceased. So, it can be moderately normal. The key thing is that it helps keep your airway open wtihout any obstructive apneas. If that's not happening, then the pressure might need adjustment. Do you have an APAP type unit? If not, you may need to explore increasing the pressure gradually. But you also need to monitor the information from your unit to be certain it's doing what you want.

... 6) I'm still exhausted during the day. I could go to sleep right now, I'm so tired. ...

Well, using it constantly is an important first step. But do try to talk with your doctor and/or RT. If they don't care, go find a doctor and/or RT who do care. You need help.

... Help. I'm still not acclimated to this bipap thing.

It takes time. But you will also need to actively push for help.

I know it's not easy. I had to finally get very stubborn to have my symptoms fully addressed. It generally takes much longer than it should, but you can get effective treatment to help you resolve your sleep problems. Good luck!

[DottyG]

Ok, I think y'all are right about breathing through my mouth. I suspect that's the cause of part of the problem.

So, I used a chinstrap the last couple of nights. Not comfortable at all. And, since no one showed me how to put it on, there's a possibility that I'm not even wearing it correctly. I'm not sure if it kept my mouth closed completely, but hopefully it helped?

I do know that I woke up about 6:45 this morning with the mask still on (yea!). I took it off to go to the bathroom and then laid back down to just doze a little bit longer before the alarm went off. I didn't put the mask back on, because this was just going to be dozing - not sleeping. I figured that was ok. Plus, it was my little reward for wearing the mask until morning.

I can't remember when I actually went to sleep last night. But, let's figure 2:00 (I'm a night person. Yes, I know I need to go to bed earlier. Let's not beat DottyG up about that right now, though! ) So, that would be a little over 4 hours with the mask and some better sleep (not perfect; I do remember waking up slightly at one point, because I had to adjust the chinstrap). So, 4 hours of good rest is helpful, right? Better than before?

I'm determined to make this work. I've decided that I'm going to have 2 resolutions right now. I'm going to eat breakfast (because that's an area where I falter) and I'm going to wear this mask at night. Between the 2 of those things, I'm on the start to feeling better?

And, SaltLakeJan, I'm so glad to meet another Oz fan! I've loved TWOO my whole life. In fact, I even had my very own Toto (he was a kitty). I lost him just this past June. It's still really painful for me to type that. I loved that boy so, so much. He was almost 19, and he was the love of my life. I really miss him so much.

[Julie]

Hi - chinstraps are only "so" good, and many people find that while they keep your jaw closed, your lips still open up and let all the air out. A full face mask (or taping) is really the only sure way to solve that. So sorry about your kitty - I know what that's like!