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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: 101
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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First things first Jerry! As a fellow gamer I have to know what convention you were at? Have you been to the one in Indianapolis?
Look into the new Resmed Swift FX mask. It is very light weight and extremely unobtrusive. When you get your unit wear the mask while you are awake. this will help you get used to having it on. Do you know what PAP unit you are interested in?
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Permalink Reply by Jerry on
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I was at our very own Open Gaming Convention in Nashua, New Hampshire (ogc-con.com) :) However I did to Gen Con 2008 in Indy, and I am planning on going again this year. Probably with a CPAP machine. :)
That Resmed Swift looks nice, but I know at this point I'd never be able to use it in the sleep study. Even the lowest setting of air was just too much for me, and this would have it all going straight to the nose. Perhaps if "real" CPAP machines can "ramp" from a lower/nonexistant airflow setting, I could use it. Are PSIs the right jargon to measure this air pressure in? I didn't think of the term last night. What's the lowest setting on your device?
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CPAP pressure is measured in centimeters of water pressure. 4cmwp is the lowest setting there is.
I have been to gen Con quite a few times. I want to go to the one in Vegas.
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Permalink Reply by RL on
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Hi Jerry,
Please feel free to disregard my opinion as I am a CPAP therapy patient (no medical certification).
Somebody let me know if I am wrong here - Why is it that someone identified with a severe stoppage of breathing (apnea) while asleep must wait 2 months for a titration study?! If this was oxygen equipment only, the situation would be addressed today! It just seems to me that the medical establishment does not recognize the importance of patients starting treatment a.s.a.p to prevent serious damage and other potential consequences. Granted, the average sleep apnea patient has been untreated for an extensive time prior to their first PSG. I really hope the system begins to recognize that time from diagnosis to treatment should be made as short as possible, especially when someone is already diagnosed with related serious conditions.
So, Jerry, are you starting CPAP therapy prior to your next test?(not clear from your post) If not, try to get that appointment moved up sooner. It may take you some time to get used to therapy and the equipment, but don't feel discouraged. It could make you mentally sharper for your gaming success as well as improve your other health concerns.
Just curious - are you used to breathing deeply during the day? If not, you might find it helpful to experiment with some breathing exercises prior to getting your equipment, to get used to taking in more air. Then, when you try the CPAP air pressure, you can work with the air flow instead of fighting against it. I had to work with myself a bit this way, but with not as much difficulty as you describe. I have been using CPAP about two months, and I like my nasal pillow type mask. I find that after a while using it, I often cannot even tell if there is any air moving through it at all. I have to physically check the outflow vents or even dislodge the seal slightly to make sure, and yes, it is always flowing fine. I have occasionally felt like my lungs had a bit of a workout from therapy also, but that is improving. Of course you should try whatever mask you are most comfortable with. Sometimes we don't really notice how poor our breathing is on a day to day basis; then when this machine starts forcing needed air into us, it is uncomfortable, and the feeling of resistance leads to a sort of fear feeling that takes over. You might have to work on it gradually, but it can get better, and eventually feel quite normal. Even if you have to take it very slow at first, maybe an hour or two at a time, when you understand what your body is doing and the equipment, you'll be able to relax with it and eventually get a full night of quality sleep.
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Hi RL,
I appreciate your concern for me a lot. :) Let me be a little clearer, though - I haven't /formally/ been given the follow up (titration, you called it?) study date, and the desire to have it postponed until April/May is my own. I feel I need that much time to A) adjust to the fact that I really have this condition, and B) prepare myself for facing those CPAP masks again. Last night's experience with that first jet of air into the nasal pillow was fairly traumatic for me, I imagine the way a burst of sunlight would be for a person who had somehow never really been exposed to it. Had I managed to get through the full test last night, I would have a CPAP on it's way to me tomorrow.
I had asked if a CPAP could be provided prior to my next test, as even just using it on a constant minimum setting in my home environment would certainly better prepare me for the follow up study. I was told by the sleep therapist that an official prescription was required before a machine could be made available to me. This is another reason for the delay, as I'm not willing to accept that answer - my primary care physician will have the results of my test by the end of next week, and I intend to request that, since the OSA diagnosis is now a certainty, that he prescribe a minimum-dose CPAP immediately and simply have the CPAP company come out and recalibrate it once the appropriate dosage is found in my follow up study. If I had to do the follow up study tonight, I know that I would freak out and have a panic attack and under no circumstances sleep with that mask on, and I don't see anything short of self-paced exposure to the mask in my home environment easily changing that in the near future. In fact, I am somewhat violently opposed to medications of any kind, but if my doctor can't get me a min-dose CPAP, then I will probably ask for a mild sedative on the day of the follow up to ensure they can at least get their test results.
As far as breathing exercises during the day? I certainly am much more aware of my breathing today, after last night's test! But before today I wasn't really paying attention to my own breathing, so I couldn't tell you whether I breathed deeply or not. I did ask the sleep therapist what my O stats looked like when I was awake, and she said 98%+, so I don't think I've had a lack of oxygen intake during the day. I would like to someday be comfortable with just a nasal pillow device, but I would have to find a machine capable of 1cmwp pressure to begin with. :) Assuming 4cmwp was the minimum setting during the sleep study, it was just too much to handle comfortably.
That resistance/fear feeling thing you described is right on the money. Even now, talking about wearing one of those masks again is making me feel a little anxious. I just hope I can get past it.
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Permalink Reply by Mary Z on
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Jerry, some advice I've seen is to ask your doctor for a sedative to help with your anxiety. Another is to practice wearing the mask while awake. With some of the masks you may not be able to read or watch tv, but maybe some relaxing music would help. Start with short periods of time until you feel more comfortable with the mask. If your machine has a ramp or settling option you can set it for the longest time possible to allow the pressure to build slowly and hopefully you will be asleep before it gets to full pressure. Sart out with as much time as you can handle it at night and take the mask off and put it back on for a bit if you relax, if not start again the next night.
Good luck, keep at it and keep posting.
Mary Z.
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I had trouble with my first PSG too. It was a split study in which the first part of the night is with no therapy, to determine the diagnosis, then the second part with PAP and masks to determine pressure titration. I had a very hard time with the full face mask, and they could not figure out a good pressure setting for me and so, no recommended Rx as noted in the study notes. I actually felt worse after this initial sleep study than I normally did with no therapy, being basically nonfunctional for the full day afterward, and with a bad headache. I don't think your awake oxygen level would reflect at all on your asleep oxygen level, so be sure to ask your doctor what your oxygen desaturation levels were during your sleep study when you see the doc for your follow up consult. I went for a second titration study, with 02 added, and a nasal pillow mask which worked for me to get a successful titration at 7. This is a fairly low setting, bottom being 4. While it was still somewhat uncomfortable, for me, having my upper face clear made it more tolerable. I did comment to the RT about the air pressure seeming high, and uncomfortable, which they assured me was not very high. I was nervous to start with the CPAP, but motivated to give it my best try, and found that my tiredness level took over the discomfort I felt at first. I awoke fully, only once or twice that night, which has since gone down to zero on some nights.
I think if we could measure the pressure of our own breathing, the level would be at 4 or higher just from our own diaphragm muscles initiating the breathing. I have also noticed on some threads that people indicate that when their PAP pressure is too low, it makes it difficult to breath, and they have improvement with the pressure being increased. I know that won't help you cope with the awkwardness of accepting any external pressure, but maybe knowing about it may help you think long term. Learning to work with your own body and breathing separately from the CPAP therapy may help make the transition easier. Essentially, you are always in control while conscious, and anything that helps you relax your conscious mind could be good. It is sort of like using any mechanical device with your body, even like riding a bike or driving a car. At first you are hyperfocused on the mechanics of doing it, then once you get familiar with that part, your brain does that on automatic, and can do other things simultaneously. CPAP seems to work that way too. I remember how it felt learning to drive manual transmission cars, and how much focus I put on coordinating the pedals and stick shift. Now it is mostly on autopilot for me. So the sooner you start with your CPAP therapy, the sooner you can work out your issues, and start feeling better.
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Got my CPAP today. It's a Philips Respironics device (http://www.ventureresp.com/productcart/pc/Philips-Respironics-Syste...). The air pressure is nowhere near as bad as it was in the sleep study, I can wear the mask for almost an hour at this point.
But as I'm posting this at 1:30 AM, I'm sure you can tell how the sleep attempt is going.:) I think what's happening is that every time I'm about to pass out, I'm having an event, which triggers increased CPAP setting and therefore wakes me up, because I'm finding myself taking deep gaspy breaths every 10 minutes or so. I gather I just need to get used to the CPAP response in order to not wake up when it does it's thing.
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Permalink Reply by amott1973 on
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So glad to hear you were able to get a mask and machine Jerry. I'm guessing that you were able to go for the titration to have them find out the optimal pressure right? If not, definitely do that as I know I find myself gasping for air via my mouth (I use the Swift FX nasal pillows) if my pressure is too low. You might also talk with your sleep doc about the settings on your machine. Maybe they can reduce the range of pressures the machine will do so that it won't jump as much during an event? I'm not sure as I don't have an auto adjusting machine yet myself.
But what I really wanted to suggest is that you wear the mask and relax doing something you like. For me it was reading and gaming on the computer! Since you mentioned the gaming convention I thought maybe gaming would be something you might find relaxing and engaging enough to take your mind off the mask and breathing. Of course I'm assuming computer gaming here. Maybe it wouldn't work so well if you were gaming with people in person, although it might be pretty entertaining if all the players were wearing their cpaps! LOL
I do hope you'll continue to persevere at the cpap therapy. I know so many folks really have to work to find both a machine and a mask that work for them. But I'll bet when you start feeling more like your old self you'll grow to love your machine as much as I do!
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Last night was horrible. I tried 17 times, until 5:30 AM. I never got more than 5 minutes of sleep, which, y'know, is normal for people like us, but unlike the normal routine my body goes through that doesn't actually bring me to consciousness that often, this time I was jolted awake every time the machine tried to compensate. At least I assume that's what it was. I tried gaming, I tried watching shows... no luck.
No, Amott, I never did get a titration. My doctor ordered it at 4-10 for now - a shot in the dark, just to make sure I could have the machine at home because he knew I needed it to practice with. My insurance is great, they get me a new mask every 3 months, I got a Quattro full face this time but next time I'm going to get a nasal mask so I can switch back and forth based on whether I intend to open my mouth and talk to anyone before bed. ;)
I'm not giving up. I figure eventually, if nothing else, I'll eventually pass out from exhaustion with this damned thing on and then maybe we'll start to see it working it's magic, right? ;) I bought some new books for tonight and this time I'm not going to start an hour before I expect to be sleepy, I'm going to wait until I'm sleepy from the beginning so that I don't tire of the mask before I tire in general. I do eventually get the claustrophobic feeling with it, but it takes awhile to build up to that, usually an hour.
Meanwhile, I'm trying to get my hands on Encore to read the CPAP data myself, but apparently they don't have a working version for Windows 7 yet. Meh.
Wish me luck tonight.
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Permalink Reply by Judy on
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Jerry, I so wish I had seen your starting post!!! I would have suggested that you ask the sleep lab to provide you w/one of their lab masks to just practice with at home. No CPAP, just a mask. And I would have suggested that you forget about trying a nasal pillows style mask at first as the pressure is more direct and does feel more intense w/that style mask. Your theory about a full face or nasal cushion mask "spreading" the air pressure less direclty to the nasal passages was right on.
Now that you have your CPAP I am going to suggest instead that you put your CPAP near your computer, don your mask, turn your CPAP on and play your 'puter games DURING THE DAY, IN THE EARLY EVENING. In other words at times you do NOT have to concentrate on or worry about getting to sleep. This gives you the opportunity to cotton up to that mask and pressure and become "friends" w/them other than when you need to sleep. And at a time when your mind is occupired w/other interesting matters. And don't press your luck, don't keep them on so long you get stressed. 10-15 minutes and take them off if necessary and try again in a half hour or so gradually working up the length of time you can use them w/o getting anxious or stressed.
Good luck, God bless and stick w/us and keep us informed.
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