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The Beginning of Another Journey
Hello everyone.
So... I was a happy fellow, enjoying life, pip pip, ho ho and all that. Then suddenly, about 5-6 years ago, I started noticing weight gain, which I figured was just a natural metabolism change; fatigue, which I figured was just a result of the weight gain; and some angina/paroxysmal atrial tachycardia, which I figured was the result of the two combined. I simply went along with life as best I could until last summer, when I shared a room with a young man during a gaming convention and upon waking up, he told me, "Dude, do you know you stop breathing when you're asleep?"
I didn't know.
Needless to say, it was somewhat disconcerting to find out, and the missing piece of the puzzle needed to realize that what I was going through was not normal aging in the late 20s/early 30s. I spoke to my doctor about it, and last night, on his orders, I had my first polysomnogram sleep study at the local hospital. I got to try the masks over my face, but without clamps and without air, and then I went to sleep normally and I was studied. At 2AM, I was awakened and they were ready to try a mask on me for the remainder of the night. First one they tried was a nasal pillow, and the sudden influx of air (the lowest setting, apparently!) was so rich that I choked on it, which woke me up completely because I was now afraid the thing was going to kill me. I asked if the pressure could be lowered, my sleep nurse told me that was the lowest setting, so I asked her for one of the larger mouth-and-nose masks, theorizing that the larger volume would translate into less pressure. It did, and I was able to wear this mask for about 15 minutes, but I couldn't get comfortable with it, and after taking it off for a moment, I found that I, who have never really been claustrophobic, couldn't bear the constriction I felt when it was put back on. I experimented with it a lot in those 15 minutes - I knew I could pull the air tube at a moment's notice, and that it was the air, not the mask, that I was finding intimidating. I knew that if, for some reason, the air flow stopped and the small ventilation holes on the mask all plugged up, I could push the plastic in with little effort to let outside air through, so there was no chance of the mask suffocating me. I KNEW these things, logically, and yet I still couldn't psyche myself up to wear it.
That's when the sleep lady said, "Look, you need this. I shouldn't be telling you this at all, but even though I've seen worse in general, you're the most severe case I've ever seen in a 30 year old male. Your O stats drop into the 70s, and you stop breathing more than 50 times per hour. You need this."
I will forever be grateful to her for leveling with me like that, because if she hadn't, I would probably not be as determined as I now am that I have to do SOMETHING about my now-confirmed sleep apnea. But of course, hearing that made what little hope there was of actually going back to sleep last night impossible, mask or no mask.
So here I am. Yesterday I thought I might have a sleep disorder. Today I'm sure that I have a severe one, that I have literally not slept more than two consecutive minutes for the last six years. I need a CPAP treatment, but every time I think about wearing it I become a little nauseous. I browsed your forums this morning, and I became aware of the things they don't talk about when they're trying to talk you into the CPAP - reddened nose, constriction, etc. Surgery's out of the question and I'd probably gag on this oral device, though, which makes CPAP the only option if I don't want to die in my 50s and be tired all the time up until then. The sleep nurse told me that that lowest setting pressure is only for while I'm awake, that she actually makes it MORE pressuring once I'm asleep until she sees best results, and that a CPAP machine at home would do the same automatically based on a time scale, and that thought is frightening to me. A follow up study is being scheduled in a couple of months - I have that long to get over this psychosis and try those masks. I know what I WANT to do - I want to go get a mask now and start wearing it, without the air, both awake and asleep, so that I'm completely used to it by the time the follow up study is done. Apparently not feasible, because insurance won't cover it until it's prescribed and it won't be prescribed until they have their study results.
What have you guys done to get over hurdles like this?
Views: 119
Replies to This Discussion
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Permalink Reply by Judy on
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Whew! Your first sentence had me worried! Good decision on your part to decide to contact your RRT for a raise in pressure! Good luck!
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Permalink Reply by RockRpsgt on
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Jerry how is your relationship with your roomie? Does his being nocturnal affect your sleep schedule? My wife is on a day schedule while I am a man of the night. This causes a struggle in our sleep patterns as we enjoy spending time with one another. It is sometimes hard for either one of us to sleep knowing that the other is up. Throw a couple of kids in the mix and you have "The Adventures in Sleep with the Hinkles". Sleep at my house is tough.
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Permalink Reply by Jerry on
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So I got my pressure up, which is good, but I still have two major problems.
1) Every time I put the mask on, I find myself breathing manually, and I can never seem to get it back to where I don't have to think about breathing unless I take the mask off.
2) A recent heatwave has hit my area and the air I'm getting now is so humid and mucky.
What are the solutions to these issues?
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Permalink Reply by Andy on
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Hi Jerry,
I've been reading up on your "adventures in CPAP" and just wanted to chime in.
First off, it sounds like you're pretty well on your way towards acceptance of this CPAP stuff. Good for you!
The most important thing is not to be discouraged. You've got two major things working against you in the beginning. One is the fact that CPAP is not a "natural" way for you to sleep, at least up until now. Your brain and body need to get used to the whole concept, and there's no set schedule on how long that'll take. Just keep at it!
The second thing is that your patience, adaptability, and general well-being are not at their optimal now, what with all of this apnea stuff you've been dealing with for who-knows-how-long! So, even with the best of intentions, it may take a while for you get used to it.
The good news is, in my experience, you will get used to it, and maybe even come to enjoy it!
Since starting on CPAP about six months ago, I'm feeling far more refreshed, and much better physically and mentally.
I've gotten so used to it that I really look forward to using it every night, all night, and I barely feel the pressure. In fact, I often have to look at the CPAP to see if it's really on, or pull the mask away from my face to verify that the air is coming out!
That's a long way from the first few days of it, when I thought the top of my head was going to blow off with "all the pressure!"
Another side benefit? I've always had a stuffy nose, and since using CPAP, that has pretty much gone away completely. I use nasal pillows mask most of the time (I've collected 4 different masks altogether) and find my stuffiness goes away. I find that neither the Mirage Quattro nor the Mirage Micro, help as much with the stuffiness, while the Swift II and Swift FX (nasal pillows) definitely help.
As for the "ramping" feature, (which starts the air pressure low, then gradually increases it in the hopes that you'll be asleep by the time you reach the prescribed pressure) I found early on, in the first few days, that it was too distracting for me. I kept waiting for the pressure to hit the desired level, and looking at the CPAP display. I shut off ramping on the third or fourth day, and have kept it off.
So, good luck with your journey, keep posting, and let us know what we can do to help!
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Permalink Reply by amott1973 on
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It's so great to hear you're successes Jerry!
Ok, it looks like you have three outstanding issues:
first the nasal stuffiness/drip etc. I DO notice this more when I'm using cpap, but I think that's because normally I just breathe thru my mouth during the day. It's actually only when I'm using my mask that I breathe thru my nose exclusively. A few things I do (well, besides blow my nose a lot) is:
1. use a neilmed nasal irrigator thingy (like a neti pot, but more of a squirt bottle so that you don't have to contort your neck and rely on gravity so much. I try to do it every night, and make sure the water isn't too hot, that just swells up the tissues more.
2. I use a nasal gel. I have a spray, but it's really more of a squirt and feels kinda weird to me, so I mostly use the Ayr gel that you just put on a finger. Hey gives me a legit reason to stick a finger up my nose. (heh- yeah, it's like I am in 2nd grade.) sometimes I'll even use some saline to losen things up first and make it feel clearer in there before using the gel. Honestly I usually end up blowing my nose again AFTER using the gel, so probably not a lot still there. aw well.
3. if the air is dry or especially if it's cold and dry I use the heated humidifier. I find that if my nose is too dry it actually makes more stuff in there. (hence the ayr gel use too) BUT if the air is humid and warm, ew, then I will usually either just have the water in the chamber but with no heat (passover like Judy said) or even just leave the chamber empty.
Ok, second issue was noticing your breathing consciously when you put the mask on. I totally get what you're saying! Heck, even after nearly 5 years of using this nightly I still do this. But not for long anymore. I suggest adding a little something distracting to your nightly ritual. Reading a chapter of a book, flipping thru a magazine, doing a kind of brainless puzzle book thing, for me I had my laptop next to the bed and did the spider solitare on the easiest level or the free cell game. Something that i could focus on but that wasn't too engaging. Then I'd forget about breathing and get sleepy.
Third was the humid air thing. I agree with Judy about either trying the passover humidification by having water in the chamber but leave off the heat, or even leave it empty. Oh, and I cannot sleep without a fan in my room. Having the sensation of moving air over me helps so much! I live in Florida, so it's almost always hot and humid. Fans are awesome. As is the air conditioner!
Best of luck to you!
Oh, one more thing. You mentioned that one morning you woke with the mask off and the blower still going. Something I noticed with my machine (which is older and totally different make from yours) is that actually the blower will turn itself off after a few minutes. So you might not have been without it for very long. I found this out because a few times I washed my hose and mask right before bed and wanted to let it kind of dry out. So I turned on the machine and let it blow for a bit. But the darn thing kept switching off. I don't know if yours does the same though.
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Both the Resmeds and the Respironics have an option for a "smart" start/"smart" stop feature. If you PAP is still running quite a while after you take your mask off most likely that option is turned off.
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Permalink Reply by Mary Z on
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My ResMed in Spont. Mode won't enable smart start/stop.
Judy said:Both the Resmeds and the Respironics have an option for a "smart" start/"smart" stop feature. If you PAP is still running quite a while after you take your mask off most likely that option is turned off.
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Hi guys.
Thanks for the suggestions, I haven't had a chance to put all of them into action but I'll keep them in mind. I got a second mask yesterday, the feeling my respiratory therapist was having was that if my bad breath was bothering me with a full face mask, perhaps a nasal pillow would be better suited for me.
Now, she gave me a chin strap, because I couldn't tell her for sure whether I was a mouth-open or mouth-closed breather. Yesterday afternoon I took a nap with it as soon as I got home from work (I was exhausted, 0 sleep the night before + sleep apnea without the CPAP the previous five nights) and found that, either due to exhaustion or the nature of the mask, I had no problems whatsoever falling asleep. Sadly, when I woke up three hours later, it was with a mountain of drool and a dry mouth with angry toothaches. Definitely needed the chin strap. So a couple of hours later, when I was ready to settle down for "real" sleep, I put the chin strap on - only now I was having problems. To be fair, it might not have been just the chin strap. Last night was a nightmare of heat, I was sweltering in a 9x9 room with a Patton fan and no clothing, and the air from the nasal pillow was actually /hurting/ my nose because the pressure was making it sting, and the air was hot and gross and... well, you get the idea. Badness all around. After 25 minutes of enduring the nasal pain, I finally had to take the mask off.
My biggest concern is the nasal stinging. I think I've found a good mask for me if I can get past that. I thought about asking for the mask that goes over the whole nose, but I already have 2 masks in 2 months (I thought insurance only covered one every 3? Still not clear on why my therapist was even able to offer me this option, maybe it has to do with the fact that last month she only had the prescription to go on but yesterday she had my charts from the sleep study and could see the OSA was severe, she kinda used the word 'severe' a LOT yesterday) and I'm sure I need to try this mask a little longer.
Oh, one question - is there a product out there to give the air going through the CPAP a mild fragrance of some kind? Maybe smelling lilacs or some such?
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http://www.pursleep.com/
has aromatherapy products. They are a reputable coompany and make many products for those of us on CPAP. Thanks for keeping us updated on your progress.
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Ayr Saline Nasal Gel will help soothe those nasal passages.Turn your humidifier down or even off as just let it act as a passover humidifier. As hot as its been the last two nights here that is what I had to do.
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