Newbie - problems adjusting Help!

[Taxcat]

Hi,

I am new to all of this. Was just diagnosed a couple of weeks ago and have been on my own with my machine for just over a week. I am having extreme difficulties adjusting to the mask and sleeping with the mask. I am using the S9 Elite with climate line. My pressure level is 10. I have the mirrage quatro full face mask due to constant sinus drainage and the fact that I am a mouth breather. When the sleep study was completed I was told that during the approximate 4 hours I actually slept at the facility I had 359 apnea's averaging 53 per hour and my oxygen level dropped to 69 which is dangerously low. I know I need to use the machine, but I have major claustrophobia issues. I am lucky if I can get a couple of hours of sleep at night with the machine. My first issue was with the air pressure on exhale. The machine I believe was set to 3 on EPR, but it is sometimes hard to notice the difference. I also have issues with the heated air that is used with the H5i humidifier. I cannot stand warm air blowing in my face. It makes me feel like I am suffocating. However, if I drop the temperature on the climate line then the level of humidity drops and my cotton mouth gets worse which wakes me up so I drink some water. Then I am waking up because I have to go to the bathroom. I feel like I can't win. I also feel like my claustrophobia/mask aversion is getting worse. The last couple of nights I couldn't keep the mask on for more than a minute before I had to desparately take it off. The doctor told me that they could prescribe hypnotics if necessary, but he also told me that it makes the OSA worse and would rather not do that. I would rather not take those kind of sleep meds if possible as well, because I don't want to be on them long term. I also remember the aids trying one of the hybrid masks on me during the second night of my sleep study, but I really did not like that mask it seemed worse than the current with the plugs up the nose.

Sorry to be so long, but I am just very frustrated and am not sure what can really be done to get me over my claustrophobia issues.

Thanks for letting me rant.

Elizabeth

[elena88]

Hi Elizebeth,
Welcome to the forum.
Im sorry you are having such a struggle, but it will get better, hang in there.
My pressure is about the same, and I couldnt take it the first couple weeks either, but something will happen,and your body will
get used to it..
It took me a few months, but I got used to the pressure. You might not notice the EPR is helping you now, because its all so new,
and it all feels like a lot of pressure.
Sometimes it helps to practice wearing the mask during the day, reading or watching tv to get used to it.
Also, if your bedtime routine was working for you, dont change a lot of stuff because you have the machine..
I dont know about the humidity situation, usually that IS what causes congestion, but someone who knows a lot more than I do
will come along with some great advice.
I can tell you dont give up, you will get used to the pressure, you wont even notice it.. and as miserable as everything seems right now,
you are going to get this therapy to work because you really need it with those numbers. Its going to save your life, and youll feel like
a new person when you have it all squared away.

[kempo]

Welcome taxcat. There are members here who can relate to claustrophobia including me. I, like you, had many apneas during my study. Most of mine were central apneas. I would suggest a few things.

1. Set up your machine next to the chair where you watch television and watch some of your programs while using your capap. The more you use it the sooner you will get use to it.

2. Accept a mild sleeping prescription for the first couple of weeks to help relieve the anxiety of using the mask and cpap while trying to sleep through the night.

3. Keep reading this forum and don't be afraid to ask questions. There are many here who can help.

[Janknitz]

I'm not sure why you are running the climate line if you are also complaining the air is too warm for you. The settings on the S9 will allow you raise the humidity without the added heat from the climate line, and you should not be getting such warm air that way. Why don't you try switching out to the regular hose instead?

I have a PR System One, and that does NOT heat the water while adjusting the humidity by some sort of magic I haven't figured out yet. The air is COLD, even still bothering me in the summer because it's so cold, but it does help my claustrophobia and panic attacks too.

I thought I couldn't use a nasal mask or a nasal pillow mask either for the reasons you cite, but I was amazed to find that I could. It's worth experimenting if the FF mask is really bugging you. Some people add a chin strap or tape to keep their mouth shut (always sounds rude when I put it that way ), or if you are really having a problem you might try a hybrid.

[sleepnationtv]

I would try using just the slimline tubing instead of the climate line tubing. This will allow the air to cool a little bit as it passes through the tubing without loosing the humidity. Hopefully the DME gave you both tubings. Hope this helps.
http://www.sleepnation.tv

[brazospearl]

Welcome to the forum, Taxcat! I'm sorry you're having problems adjusting, but you've got a good machine and are in the right place to learn how to make your therapy as effective as possible. Switching to the slimline hose would probably help with the warm air issue. And you might want to look into the Hybrid mask; since nothing on it fits above your nose it might feel less claustrophobic. It has nasal pillows and a mouth pillow, so the mouth breathing wouldn't be a problem.

[barbed15]

Hello Taxcat from Ohio! I'm from Ohio too & using ff mask; I'm claustrophobic, too. FF works better for me than the nasal did; could not breathe. I haven't been on it that long; since March, & it's getting better. There are still nights when I take it off, & not remember doing it, but I'm finding I wear it longer & longer, & many nights all night long.
I set the humidifier on mine kinda low, because I can't stand being hot. I use a Neti Pot before bed & it helps with the sinuses. A warm shower before bed can help too, because it helps the body cool down. We have 1 large window ac for our apt. & I usually go stand in front of it for awhile before I go to bed! I keep the bedroom as cold as possible!
It's like all these great folks have said; it takes time; longer for some than others, but your body will finally adjust & you'll notice yourself feeling better.
God bless & much rest to you
Barb

[Taxcat]

Thanks for all the support.

My DME is actually the director of the sleep clinic that handled the study. He had the equipment for me, mask, hose etc. Set the machine with me, had me try the mask on while I was there and show me how to use it and make me sign my life away for it. I was supposed to also have an oxygen monitor sent out to me, but that has not happened yet. I have a call into him to discuss some of my issues. Right now we keep playing phone tag. He did not give me both the slim line and the climate line hose. I will ask him about that as well. I set the temperature lower to 69 degrees last night and turned the AC down and it was better, but I still only got 1.8 hours on the machine. The rest of the time I was up playing cards on the computer because I could not sleep. I am exhausted. I did try to wear the machine while watching tv one night. That was the night I had the most hours on the machine 4.7. I also fell asleep for a few minutes while watching tv on the couch that night. I will try to do that more often in the evenings to hlep me get used to the mask. I will aslo ask about the slim line hose option. I am also seriously considering ordering one of the hybrid masks from this site with return insurance to try as well.

On another note, I am supposed to use a neti pot 2-4 times a day and have been unable to do so. I cannot get the water to run out the other nostril. Instead it goes up into my sinus cavities and starts to go back into my ears and down the back of my throat creating the most intensely painful headache I have had in my life that lasts a long time. I have an appointment with an ENT in a couple of weeks to check out my situation and to run new allergy tests on me. It has been 25 years or more since I was last tested for allergies.

Maybe I will get there one of these days. Thanks again for the suggestions and support.

Elizabeth

[Julie]

Have you tried turning down the humidifier? It can make some people congested.

[Emilia]

You might want to look using a nasal irrigator instead of a neti pot. This lets the machine do the irrigating rather than trying to pour water up one nostril. When you turn your head is when the problems with the water going into the tubes to the ear happens. Look at this one: http://www.hydromedonline.com/hp.html?r ... swodaD42dA

[newhosehead]

Hello Elizabeth,

Welcome to the forum! I am really sorry to hear you are having so much trouble adjusting. You have gotten some excellent advice already and I was really glad to read that you are trying to wear the mask while watching TV, etc. I have the same mask you do and while you may need to try another, I think wearing mine while watching TV or just resting helped me a great deal in the beginning. I still turn on the TV in the bedroom and set the sleep timer though I sleep on my side and cant see it. There is just something about listening that makes me drop off very quickly. Maybe it is really bad programming.
I am just over six months into treatment and honestly can't believe that most mornings I wake up and think I must have taken the mask off because I am just so comfortable and breathing so easily. Reaching up to feel it there makes me smile. I cant imagine bedtime without it now.
It really can get better. Hang in there!

Jeanette

[jweeks]

I know I need to use the machine, but I have major claustrophobia issues.

Elizabeth,

Please hang in there. I ran into issues at the start, and I wanted to quit several times. I found help and comfort from some folks here and they talked me down off the ledge. Now, almost 2 years later, I don't even feel the pressure, and using the machine is my normal.

While some folks have given useful suggestions, I am going to give a bit of tough love. You are going to have to dig down deep inside yourself and decide that you are going to make this work. For example, if you think things are claustrophobic now, just think how you would feel living in a nursing home after your stroke, or how claustrophobic a casket might be. That isn't any kind of exaggeration--with an O2 level of 69 percent, you are dangerously close to having a stroke. Not using the machine is simply not an option for you. If you cannot use it, you cannot attempt to go to sleep. Sleeping without the machine is simply too dangerous for you.

I suspect that you might have a fear of the machine. Perhaps you are afraid that it is going to suffocate you. You might be relieved to know that it simply isn't possible. There is a relief valve on the mask that will allow you to breathe if the machine loses power or malfunctions. If this isn't it, then you are going to have to do some soul searching and figure out what is holding you back. All kinds of people use breathing masks, from researchers, scuba divers, astronauts, pilots, painters, and people with breathing problems. It is very normal. You need to convince yourself that this is your new normal.

Good luck!

-john-

[Janknitz]

Using a neti pot 4 times a day sounds a little excessive to me. Twice a day should be plenty.

You can buy aerosolized saline spray in the drug store and either use it like a neti pot, or just "mist" your nasal cavity. I couldn't tolerate sinus irrigation, but the misting works well for me--you just shoot some saline spray up there and then gently blow your nose. Soothing and hydrating the tissues is good enough.

My husband was instructed to use nasal irrigation for a deviated septum and constant sinus infections and ended up shooting bacteria up into the eustachian tubes causing severe bilateral ear infections. I know there are a lot of people who swear by nasal irrigation, but I would take it a bit easier, particularly if it is causing you that much discomfort.

A properly adjusted xpap humidifier can help a lot. I rarely need to do the mist anymore. It sounds a bit counterintuitive, but if you are getting a lot of congestion, try turning the humidifier DOWN.

[Maryaz]

Taxcat, I am really still new at this but want to mention a couple things that I experienced. I am a mouth breather and didn’t think I could wear a nasal pillow but I like the Swift FX one. However, I have a sore nose that I need to get cleared up before I use it more.

Also, my very first mask was also the Mirage Quattro. I really had my doubts of this working at that time. It was just too much on my face. Listen to the people hear helping you and give some of the other masks a try. If the pillows won’t work there are masks like the Easy Life and it goes over your nose but not near as comfining as the Quattro.

I cannot believe I am telling someone something positive as I am really struggling with this finding the right mask. The Easy Life is almost perfect for me but not quite. It is the best yet until I find what works better. In the beginning the flow was a real downer for me. I got used to that by what is being said about trying it while awake. I am on a bipap and is a little different I think.

BTW, if I cannot sleep I play freecell on the computer. Very relaxing. I just cannot get used to the Sinus Rinse but really should. I am going to talk to my Pulmonary Dr about that soon. I only did it once and seemed weird. I use saline spray a lot but it also seems to be a drying agent. My nose is always dry.

I have a few masks and am in the process of re-trying them all. Even going to try the Quattro again because when I first used it everything was new and it did not work. It leaked too but I have learned more since then and maybe I can adjust it better.

Do most people have to buy their masks? I have not yet but after I get all my questions together I am to call the Tech again.

I can add to what Janknitz posted. I use a bipap and I know that those are used in the ER many times before putting a person on a ventilator. A ventilator to breath for you is not pleasant and you would prefer a breathing machine. You really need to hear what Janknitz posted.

Good luck Taxcat

[ozij]

Hi Elizabeth, and welcome to the forum.
When I started therapy, 5 and something years ago, just looking at a human being wearing a nasal pillows mask made me queasy.
We come to this therapy traumatized by having experienced choking hundreds of times a night, every night. It happens when we're asleep, and the more primitive part of our brain, the one that is tuned to the brain's need for oxygen, the one that controls our breathing has been saving us from real danger by alerting our body to the real danger it is in. Night by night. Our brain knows that we are in grave danger -- because we have a breathing problem when we sleep. And night by night it does what it has to do to alert us: it pours anxiety causing hormones into our blood to wake us up. Given that experience, it is a wonder you are not more claustrophobic. And given that experience, it is no wonder that your brain is - to put it mildly - wary of having something on your face that may obstruct your breathing.

Now, when you know consciously what sleep apnea is, it is your job to convince that life saving part of your brain that you are finally listening to it - that your more evolved part had finally realized the danger, and you are doing something about it. Tell that phobic part that you finally know and appreciate what an important job it had in alerting you to danger, thank it. Don't try to ignore it - it will scream louder. Tell it "I hear you, you're afraid we'll choke. You kept us from choking. But you see this mask here? This is to help us breathe. This is here to help you in your job of keeping me properly oxygenated. It reminds you of danger, but it is not dangerous . Thank you for waking me so many times, I really was not aware of the danger - but now I know what the real danger is." Do this many times, in many ways while trying to get used to wearing the mask.