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I've been gone but am back..hi all;
06-22-2014, 10:01 PM
I've been having a really hard time wearing any kind of mask at night. I have severe TMJ due to a dislocated jaw as a kid and advanced open angle glaucoma, which makes me super paranoid about my eyes. I recently changed doctors because I never met the first one and was being treated by a nurse who kept me waiting two hours. They had my pressure at 7. My new doc did a new study on me and said my pressure should be set at 10. I told the new doc I can't tolerate the air blowing in my face so hard when I wake up at night and his solution was to set the pressure back to 7, my original number because I was using the machine at least 4 hours a night when it was set there. That's not even the therapeutic setting. I guess I'm stupid for agreeing with him that it was ok to do that. I'm severely depressed about this not working. He told me I'm not a "clean" patient. That means I have a zillion other med issues so sleep therapy might not even work for me like it would for a simple case of a healthy individual with only sleep apnea to deal with. I just can't deal with it. I see my family doc tomorrow. I noticed on the Medicare forms I get 10 minutes a visit with her. Good luck trying to talk in depth about any darn thing at all. I haven't been posting because there's enough negativity in our lives without me adding to yours so I figured I'd stop being an active member. Could some please tell me though, how many episodes of apnea an hour constitutes severe or moderate? I have 77 an hour and have been told it's moderately severe by one doctor and mild by my current doc, the one who said not to even use my machine at the correct level. This is from a doc who has been in this business almost 20 years. I think he just took an instant dislike to me for who knows what. He just doesn't seem to care. I'm sorry this is so long. This condition is the hardest thing on earth to live with. I'm so jealous of those of you who have it under control. I hope you realize what a miracle that is. I should delete this I know...My family doc told me I have sleep deprivation. I got into a car accident and can't use the machine more than four hours if I'm lucky. Half of that is spent with me awake wearing the mask. UGH. I hate to post this. I'm just plain desperate for help. Love, DJ
DJ welcome back. First off, 77 events per hour is very severe - it definitely needs to be treated. Here in Oz, the categories run: 0-5 = OK; 5 - 15 = mild; 15 - 30 = moderate; 30 - 60 = severe; >60 = very severe. However as far as I know, there's no automatic relationship between the number of events and the pressure needed to control them. A low pressure might be enough, while somebody with less severe apnea might need a higher pressure - it's all down to the individual.
Second, I doubt there is any such thing as a "clean" apnea patient - most of us here seem to have one or two or more concurrent conditions (I have diabetes type 2, hypertension, fibromyalgia and mild chronic kidney dysfunction. Oh, and hypothyroidism). Having said that, I do believe it's possible to treat the apnea as a free standing condition, which will hopefully reduce the impact of some of the other conditions.
Can you expand more on the problem you have with the pressure? You said you can't stand having it blowing in your face: do you mean you can't breathe against that pressure, or it's actually blowing onto your face through a leak? The very first thing is to make sure your mask isn't leaking, and that it's comfortable for you. Until you get that right, everything else is futile. If the mask is the problem, then maybe try a different type such as a nasal or full face.
If the problem is actually breathing against the pressure, there are a number of options. Your machine should have an expiratory pressure relief setting (EPR). Try setting this to maximum (EPR=3) which will release the pressure as you're breathing out. Also, if you're not using the ramp, try turning that on. It will start at a low pressure of 4 then gradually increase over time to the therapeutic pressure. The idea is that you should fall asleep before the pressure gets high enough to worry you. If these things don't work, it might be time to try a different machine such as the Resmed S9 Autoset. This will keep the pressure low and only increase it when an event occurs, which should hold off any subsequent events.
Lastly, have you considered a tranquilliser or sleeping pill? Talk to your doctor about zolpidem or valium. You might need some short term help to get your body to relax and accept the therapy. Once you get comfortable with it, then you can taper off the drug.
There's no one right solution which suits everybody, but these are some ideas you might try. The fact you have multiple medical conditions is not unique - in fact it's the norm, so don't accept that BS from the doctor. And if the doctor isn't prepared to work with you to overcome these problems, then find a new doctor!
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Welcome back DJ, you shouldn't be afraid to come on here to talk or vent whenever you want. To answer one of your questions 77 apnea's an hour is severe sleep apnea. 15 -30 is moderate and 30 + is severe.
Obviously we can't help you with the other illness's but keep talking to us about sleep apnea.
After 3 years of being on CPAP some nights I only use it for a couple of hours and some nights I get a full 8 hours, just use it as long as you can, but try and use it, DON'T GIVE UP.
You have to remember each of those 77 times an hour, you wake up either consciously or sub consciously, your blood rushes to your vital organs, your heart and brain from your arms and legs, your breathing stops for 10 secs or more and no oxygen goes to you blood or brain.
Imagine what that is doing to your body and could be the cause of some of your other illness's.
Keep trying and let us know what we can do to help.
When I think about wearing my CPAP, I think about all the stories that I have read (and can share with you) of family and friends of loved ones that they have lost and wished they had either been diagnosed before it was too late or had used the CPAP they were give, keep at it
06-22-2014, 11:32 PM
"I'm not a clean patient."
Many/most of us are not. Some have issues that play nice with OSA, and others have issues that affect OSA - I am on pain meds 24/7 (opioids) - which doesn't play nice with OSA - makes mine worse. My sleep Doc doesn't 'complain' about it, it is what it is, and we need to deal with it and take it into account when treating you - his words.
I know next to nothing about TMJ - is there a way to 'fix' it? Is it a 'tolerate' issue, or a get used to it issue? What about a different style of mask? They have full-face masks now that include the eyes (for those that leak around the eyes) I believe?
More to explore perhaps? A Doc that sees it as a challenge rather than one that whines about being 'clean'?
*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.
"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
06-23-2014, 05:00 AM
Hi DJ, welcome back and I am pleased you took the step and came, that was very brave and you have taken one of the first steps in your recovery.
I am sorry you have seen such worthless medical people, I can understand you feeling like you do.
Good work for continuing to use your mask.
You have already been given some excellent advice and I am sure more will come.
Stay strong and stay with us, your journey will get easier.
06-23-2014, 07:37 AM
DJ, when you are in the middle of all this you can't see the light at the end of the
tunnel.Plus your brain just can't function. BUT THERE IS HOPE. YOU HAVE TO
BE Patient. This forum is a great resource for you. You can do it!
2010 sleep study 63 AHI, 2014 3.0
06-23-2014, 10:24 AM
I can't believe I've been diagnosed a year and a half and just realized yesterday I have severe sleep apnea, not mild, etc, etc. I think they've been downplaying it so they could get away with giving me a crap CPAP and not an autoset, which I do need. I'll probably have to buy one on my own since I own this piece of crap now thanks to Medicare. It's a matter of doing things as cheaply as possible. I had a dislocated jaw, which ended up in lifetime TMJ which is just jaw pain. There are splints that can be used at night to help alleviate some of the pain, but I haven't gotten that done yet. My dentist blew me off. So many doctors do that to me and I consider myself polite and considerate of them. It comes down to the state of medical care in the US. It's just plain bad for me and everyone else. It should be based on naturalistic solutions not chemicals. We're in the dark ages as far as sleep apnea treatment is concerned. I read an article this morning that said new research is saying that varying blood sugar levels affect apnea. We just don't know what it is and why it happens. Eventually we will. I do know that you all helped me realize I need to wear the mask every night. I wasn't considering I was told my condition was mild...ha ha! My problem isn't leaking. I use the large pillow with my mask now and there are no leaks. The problem is repeatedly waking up regardless of having the mask on. I see my fam doc next week and will get my Lunesta prescription renewed. My sleep doctor wouldn't prescribe it because I take narcotic pain meds due to severe disc disease and he said he didn't want to be responsible for me dying from too much medication. What a wimp that guy is and I had so much hope he'd be good. Are any of them? Is it just I'm a Medicare <and therefore garbage> patient? They assume all of us are uneducated idiots, which is so far from the truth. Thank you all for waking me up to how bad this is. I truly didn't know until last night. I appreciate each one of you, even the ones who didn't write back, so much. Just having a safe place to come to means the world to me. Love, DJ
06-23-2014, 02:12 PM
(06-23-2014, 10:24 AM)djjwilly Wrote: I can't believe I've been diagnosed a year and a half and just realized yesterday I have severe sleep apnea, not mild, etc, etc. I think they've been downplaying it so they could get away with giving me a crap CPAP and not an autoset, which I do need.
With respect to your machine, at least your machine reports efficacy data, not just compliance - you could have been given a brick. Even tho it's not an Autoset, you can look at the data to see how you are doing, and make manual changes as indicated. I would encourage you to download and start using the (free) Sleepyhead software. I prefer the graphs in Sleepyhead over ResScan, as it is much easier to see the details when you need to examine something closely.
I would also suggest that you start a log or journal, and start recording what changes you make and at least a summary of the results. I do this in a text file on my computer - very compact and enough to spot trends, either good or bad.
Another worthwhile experiment for many PAPers is to try some of the techniques for avoiding sleeping on your back. This position is a bad one for many, if not most of us apneacs. In this position, gravity is helping the upper airway to narrow or close. Anything to avoid this position can make a HUGE difference. For example during my sleep study, my AHI was 58.8 when supine, and 3 when not, almost a factor of 20. From reading this forum, I learned some measures to try - tennis ball on the back of a sleep shirt, Bumper belt, wearing a backpack, etc. At this point my AHI is routinely below 1 - I wear a kid's backpack stuffed with dog toys, tennis balls, other lumpy, uncomfortable objects, every night. For some, sleeping in a recliner, or elevating the head of the bed can be enough to discover if this is going to be a factor or not.
Another recommendation - get a full copy of your sleep study - it may have information in it that will help figure out what is going on with your sleep. In my case, the summary report said NOTHING about positional effects, even tho position was the single most significant factor found.
I hope some of these ramblings may help you. Good luck on your journey, and DON'T GIVE UP!
PAPing in NE Ohio, with a pack of Cairn terriers
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