Looking For Tips On How To Interact With The Doctor

[Sleeprider]

The good part is, he conceded to your concerns, even if he didn't admit it.

The negative is, he in fact deceived you, mostly in the interest of keeping you in a less capable machine. Why? What's in it for him?

That's what I'd like to know. He said that if we can't do it with this machine it just won't work. I'm one of those people who can't tolerate CPAP. He mentioned that my next best alternative was to see a specialist dentist for a possible mouth piece. I don't know how much this applies but he looked at my throat and said I have one of the narrowest he's seen. He asked if my ENT discussed anything he could do with that. I told him the ENT discussed surgery but felt that my chances of having a great deal of success would be slim.

Mike, I think you are committed to making this work, and I empathize with your frustration of having physical issues that result in physically painful air ingestion, and having a sleep specialist and DME that seem to be doing everything they can to keep you from trying a bi-level machine that 'could' be an answer. There is an easy solution. You can take 100% control of your own therapy and equipment, and if it works, you get a good night's sleep. If not, you gave it your best and can move on to the next option.

It would be great if your current Autoset machine can be made to work out. However if not, as long as you continue to work with the current sleep specialist and DME, you will continue to be frustrated. If you are able to buy a used bi-level machine at a good price off Craigslist, or this forum, then you can set it up and find out if this is an answer. Here is one option local to me, and you might find a better deal near you BiPAP. If an option like this doesn't work, your financial risk is that you will end up reselling the machine for nearly the cost you paid (I would negotiate that asking price down and need to find out if it's Pro or Auto model).

It's just a thought. I wish you the best of luck with your current machine, and sleep specialist, but if you choose to just step out of the system, as many of us have, I wouldn't blame you. It's entirely your choice. Do what works best for you.

[Mike208]

Look - why do you take such offense at strangers and let your buttons be pushed like that? Your health is what this is about and just because you don't like someone, or can't take the heat of one note on an internet forum, is not a reason to cheat yourself out of good treatment. So it'll take a few wks, big deal - at least your family will still have you around for a while and you'll get to finish whatever in your life you had plans for when you got sleepy å lot.

Why? Because a person comes to a forum such as this for help, not snide remarks and condescending attitude. If I wanted that I'd continue a relationship with my sister. I'm currently dealing with a couple other nagging medical issues other than apnea. I'm fed up with the lack of support/answers from doctors and other medical staff. Fed up with the, "Well, let's try this. No, didn't work? Well, let's try this." I realize medicine is not an exact science but the lack of concern, the lack of empathy I find is appalling. They assume they know what's going on when they don't. Their ideas don't work, they don't know what else to do, so they pass you off to someone else. It's a mix of people actually NOT knowing what to do and others who fail to do enough.
When I first posted to this forum I was more or less attacked for not knowing what to say or how to say it, not knowing my equipment. That isn't right. You don't do that. Should I have a thicker skin? Maybe. But my point is that a person comes to a place like this for HELP. Instead of knocking a person down, help them to know what their equipment is. Help them to understand what's going on.
Yes, I do have Sleepy Head and it works. I looked at it that one time to show that it was working. I have a better understanding of my figures than I did. I actually was able to sleep 4.5 hours last night with the mask on, the first extended period in a while. But I woke up with the extreme pain in the chest, bloating, pressure in the gut, that I have been having. My AHI was 9 during that period, better than it has been for sometime. When I had the machine set on 10 recently my AHI was up over 40. I was only able to tolerate the mask for an hour or so that night.
I got up last night to use the bathroom, came back and attempted to wear the mask again but could not. The pressure and pain in the gut was too much. And I could taste stomach acid so I knew my GERD was fairly active, which, according to the doctor yesterday, is not happening. Right. I did not demand a bilevel machine as I was saying I would because I knew he was not going to approve one. He and the sleep tech both stated that, if I could not do it with this machine, it was not going to work. So, what do I do? Find another doctor? Start over? Go see a dentist? It's easy to tell me to find another doctor but not so easy to do. I've been through this before on my GERD/IBS issue. You seek another opinion and that doctor gets the idea that you're one of those people who are going to find fault with anything and everything. They're too busy to "waist" their time with you. I was actually told that by a doctor one time years ago. He added that he felt my condition was more complicated than he really wanted to get involved with. Idiot!! After awhile, I realized how lucky I was because nobody needs a doctor like this! He was fat, lazy, and looking to only treat sore throats and tummy aches the rest of his career.
Those of you who have been here awhile and are very active obviously know who the members are that tend to be more of a pain in the behind than a help. Have you ever taken that person aside and tried to find out why they want to be that way? I realize that some people just want to be jerks. There's probably not too much that can be done with them. But perhaps some don't realize they're doing that. I'm not perfect. I've been known to be easily offended. I've been known to be impatient. I try not to be but I'm not always successful.

[Mike208]

The good part is, he conceded to your concerns, even if he didn't admit it.

The negative is, he in fact deceived you, mostly in the interest of keeping you in a less capable machine. Why? What's in it for him?

That's what I'd like to know. He said that if we can't do it with this machine it just won't work. I'm one of those people who can't tolerate CPAP. He mentioned that my next best alternative was to see a specialist dentist for a possible mouth piece. I don't know how much this applies but he looked at my throat and said I have one of the narrowest he's seen. He asked if my ENT discussed anything he could do with that. I told him the ENT discussed surgery but felt that my chances of having a great deal of success would be slim.

Mike, I think you are committed to making this work, and I empathize with your frustration of having physical issues that result in physically painful air ingestion, and having a sleep specialist and DME that seem to be doing everything they can to keep you from trying a bi-level machine that 'could' be an answer. There is an easy solution. You can take 100% control of your own therapy and equipment, and if it works, you get a good night's sleep. If not, you gave it your best and can move on to the next option.

It would be great if your current Autoset machine can be made to work out. However if not, as long as you continue to work with the current sleep specialist and DME, you will continue to be frustrated. If you are able to buy a used bi-level machine at a good price off Craigslist, or this forum, then you can set it up and find out if this is an answer. Here is one option local to me, and you might find a better deal near you BiPAP. If an option like this doesn't work, your financial risk is that you will end up reselling the machine for nearly the cost you paid (I would negotiate that asking price down and need to find out if it's Pro or Auto model).

It's just a thought. I wish you the best of luck with your current machine, and sleep specialist, but if you choose to just step out of the system, as many of us have, I wouldn't blame you. It's entirely your choice. Do what works best for you.

Thanks for the support. Based on last night, I think I'm going to call the sleep center and ask exactly why we can't try a bilevel machine. And I will ask if there's a final word on it. If they say no then I will have no choice but to move on.

[archangle]

I strongly suggest that if the Doctor offers you a ride in the Tardis, you turn him down. It sounds exciting, but dangerous and scary things usually happen.

[Mike208]

Just spoke with the sleep tech. She admitted that I'm failing CPAP. NO! REALLY! Sorry. Anyway, I asked what would be the harm in trying a bilevel machine. She said she didn't think there was any harm in it, but in order to try that machine I have to be failing CPAP, which I am. So, she's going to speak with the doctor and get back with me.

[Mike208]

I strongly suggest that if the Doctor offers you a ride in the Tardis, you turn him down. It sounds exciting, but dangerous and scary things usually happen.

LOL Doctor who??

[novatom]

I will be seeing my Dr. on the 20th after 3 weeks of CPAP therapy. My machine was set to 6 and as far as I can tell, I don't think I was able to change the settings. I jiggled the knob to "5" but I don't know if that did anything (you can see the brand on my profile). That's as high as it went, but the "5" did not represent a pressure setting- that I know (I'm not sure what it represents, I need to study the owners manual more).

I've used it every night (except NY eve, which was one of the first nights) for the minimum of 4 hours. The Dr. didn't drive home to me how important it was to use it every night (esp. for insurance purposes) and I didn't really understand the importance of that until I read these posts. I did some self-analysis a couple times using the Sleepyhead software but I stopped last week as I was a little nervous that I might overwrite or erase information on the SD card.

The Dr. told me that all I needed to do was bring the SD card in with me next Tuesday, but if I need an adjustment, I would think they would need to see the machine as well. I'm going to bring it in but I really have this feeling that I will not get all my answers next week, partly because I don't think I know all the questions to ask. My focus has mainly been on getting used to the nasal pillows and some nights have been better than others. Just when I thought I had the situation licked, I would experience a sleepless night (or very little sleep). it's happened to me twice this week alone. Some nights I have more trouble controlling my breath rate and feel like I'm struggling.

Generally I've been satisfied with my sleep clinic however I wish I could spend more time consulting with the doctor. A hotline would be nice.

[Mike208]

I will be seeing my Dr. on the 20th after 3 weeks of CPAP therapy. My machine was set to 6 and as far as I can tell, I don't think I was able to change the settings. I jiggled the knob to "5" but I don't know if that did anything (you can see the brand on my profile). That's as high as it went, but the "5" did not represent a pressure setting- that I know (I'm not sure what it represents, I need to study the owners manual more).

I've used it every night (except NY eve, which was one of the first nights) for the minimum of 4 hours. The Dr. didn't drive home to me how important it was to use it every night (esp. for insurance purposes) and I didn't really understand the importance of that until I read these posts. I did some self-analysis a couple times using the Sleepyhead software but I stopped last week as I was a little nervous that I might overwrite or erase information on the SD card.

The Dr. told me that all I needed to do was bring the SD card in with me next Tuesday, but if I need an adjustment, I would think they would need to see the machine as well. I'm going to bring it in but I really have this feeling that I will not get all my answers next week, partly because I don't think I know all the questions to ask. My focus has mainly been on getting used to the nasal pillows and some nights have been better than others. Just when I thought I had the situation licked, I would experience a sleepless night (or very little sleep). it's happened to me twice this week alone. Some nights I have more trouble controlling my breath rate and feel like I'm struggling.

Generally I've been satisfied with my sleep clinic however I wish I could spend more time consulting with the doctor. A hotline would be nice.

I've not had anyone even remove the SD card in my machine. I asked about that yesterday and was told they need the machine in order to really be sure of the data. And if they need to make adjustments they can't do it without the machine.

[OkyDoky]

Mike, In your first thread you once stated that you were breathing shallow and I wonder if you work on that if it might not help things. I had bad GERD frequently waking gaging and coughing with reflux before CPAP and my treatment has decreased it.
Back to the breathing, as adults we often breath shallow using our chest and neck muscles which is not the most effective way. We are born using our abdominal muscles but for whatever reason lose this sometime. I would suggest you lay down on your back and place your hand on your abdomen and see if you are raising it up and down. Once you know how it feels, concentrate on this when you are awake during the day normal deep breaths.
Second, during the day, place the tip of your tongue behind your upper teeth and breath through your nose.
Third, during the day, relax while you are doing the above, place your CPAP on and breath relaxed.
After awhile, this will become habit at night without thinking about breathing, it may also help your GERD.
Just my observations from my experience but it wouldn't hurt to try.

[Julie]

Mike - try taking even just half a Tums - just plain Tums - before bed and see if that helps your GERD because it did mine. More than that and it may backfire. I long, long ago stopped taking and PPI's, or anything else because they all had side FX, but plain old Tums doesn't.

[Sleeprider]

I will be seeing my Dr. on the 20th after 3 weeks of CPAP therapy. My machine was set to 6 and as far as I can tell, I don't think I was able to change the settings. I jiggled the knob to "5" but I don't know if that did anything (you can see the brand on my profile). That's as high as it went, but the "5" did not represent a pressure setting- that I know (I'm not sure what it represents, I need to study the owners manual more).

Novatom, you can access the clinical menu where you change pressure by turning the control dial to setup, then press and hold the control knob and ramp button at the same time. Now scroll to setup. See any difference?

[palerider]

Novatom, you can access the clinical menu where you change pressure by turning the control dial to setup, then press and hold the control knob and ramp button at the same time. Now scroll to setup. See any difference?

according to their profile, novatom has a plus machine, so no data... however, later postings have indicated the profile may be in error, so, pls disregard this.

[New Guest]

The one thing Mike had said in another thread was he had a cervical fusion and nerve damage. I posted before saying I had the same problem and I fill up with air too. I feel the air going into my stomach within minutes of turning on the apap. I have been told to sit up and to walk around while on apap.??? I get through the four hours in pain from being blown up like a ballon. Then I spend the next three to four hours rolling around and walking around trying to release the air and releave the pain from being bloated.

[Mike208]

Mike, In your first thread you once stated that you were breathing shallow and I wonder if you work on that if it might not help things. I had bad GERD frequently waking gaging and coughing with reflux before CPAP and my treatment has decreased it.
Back to the breathing, as adults we often breath shallow using our chest and neck muscles which is not the most effective way. We are born using our abdominal muscles but for whatever reason lose this sometime. I would suggest you lay down on your back and place your hand on your abdomen and see if you are raising it up and down. Once you know how it feels, concentrate on this when you are awake during the day normal deep breaths.
Second, during the day, place the tip of your tongue behind your upper teeth and breath through your nose.
Third, during the day, relax while you are doing the above, place your CPAP on and breath relaxed.
After awhile, this will become habit at night without thinking about breathing, it may also help your GERD.
Just my observations from my experience but it wouldn't hurt to try.

The shallow breathing was due to the problems exhaling I believe. I felt like I was not able to exhale completely and my next breathe was not as deep. I didn't notice that last night. I seemed to be breathing okay. I suppose that's from setting the EPR where it is. It's the air in the stomach and GERD that I had issues with. Man, it's killing me today.

[Mike208]

Mike - try taking even just half a Tums - just plain Tums - before bed and see if that helps your GERD because it did mine. More than that and it may backfire. I long, long ago stopped taking and PPI's, or anything else because they all had side FX, but plain old Tums doesn't.

I have tried it all in dealing with the reflux. Sometimes I get a lot of relief and sometimes I don't. I've really never found anything that helps 100%. But I can tell you that, since using the CPAP, it has been far worse. When the doctor poo pooed my comments about that and told me that doesn't happen I didn't know what to say. I'm the one experiencing it. I know what's going on. Yet he says it doesn't happen. Wow.