Replies to This Discussion

Permalink Reply by Judy on September 13, 2009 at 12:01am

I haven't heard it either. I have COPD. Four sleep doctors, all pulmonologists, at one sleep lab and a sleep pulmo at another have never made such a suggestion and 2 are responsible for my being switched from CPAP to VPAP (bi-level). I have some pulmonary hypertension due to the COPD but no BP problems. I also supplement my VPAP w/2L of 02 on doctor's orders.

Okay, so have you been seen by a pulmonologist? Is your shortness of breath due to pulmonoary problems? Is it due to cardiac problems other than "just" high BP?

I would suggest you get on your family doctor to go over your health situation, tests and procedures for lung and cardiac problems, as well as kidneys, referrals as necessary to appropriate specialists. Request the doctor's dictated results 1-2 pages each) and the full scored data summary reports w/condensed graphs (5+ pages each) from every sleep evaluation and CPAP and BI-PAP titration you've had. They are part of your medical records and you have a legal right to these copies under HIPAA assuming you are in the USA.

I can understand your going to see a new sleep doctor given your results since Easter. And I'm reluctant to go against a sleep doctor's advice, especially a sleep pulmonologist, but this does sound strange ON THE OTHER HAND then we don't know all that is going on w/your heatlh either. Supposedly he does.

As my husband always says - its time to take names and kick a**

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Permalink Reply by Rock Conner RRT on September 13, 2009 at 4:11am

PAP does increase work of breathing & cardiac effort, but in most cases the extra effort is offset by many other benefits for obstructive sleep apnea sufferers, including lowered blood pressure.

Though I don't know all your medical history, I suspect that you have issues not related to obstructive sleep apnea, so they won't be addressed by BPAP. You've gone to multiple doctors to get those issues resolved, and you've gotten conflicting advice. I feel your pain, I understand your confusion, & I wish better things for you.

Yours is the second case I've encountered in the last few weeks in which a pulmonologist has suggested O2 therapy for treatment of (I assume) hypoxia related to sleep apnea. That approach doesn't make sense to me. It seems like putting a Band-Aid over the underlying problem, and neglects other important issues related to sleep disordered breathing.

Based on the little I know about what's going on with you, I recommend that you follow the physician advice that INCLUDES treatment of your sleep apnea. I admit that I don't know as much about medicine in general or your case in particular than the pulmonologist who advised you to trade BPAP for oxygen, but I'd go with the doctor(s) who acknowledge and are addressing your sleep apnea.

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Permalink Reply by D. W. Conn on September 13, 2009 at 7:39am

I have to say Rock Conner is giving you this best advice here....edema? do you have congested heart failure? Need to talk with your PCP some more in detail.

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Permalink Reply by robert cooper on September 13, 2009 at 10:52am

OK, sorry for no med background I am a little upset here at my medical professors, I had a complete heart workup at Cleveland Clinic along with pulmonary pressures, they said after the work up I AM SORRY MR COOPER I DO NOT KNOW WHAT TO DO FOR YOU, still with leg edema x3, still fatigued, still SOB, and they say that? Then my local pulm/sleep doc said after having me do a cpap for 6 months with NO results, YOU ARE BEYOND MY RELM, YOU NEED TO GO TO A BIGGER CITY WHERE THEY SEE AND KNOW MORE, so I did went to Pittsburgh, where I went to UPMC lung center, did a new sleep study got on BIPAP said better for me, and used since easter, ONLY thing BP came down THAT is it, still tired, so they did a startdust test saying I was NOT having O2 saturation as I needed 70% without bipap, 92% with so O2 was ordered along with Bipap, now using both I still see and feel no difference, NOW UPSET I go to another UPMC cheif PULM DOC, where he does NOTHING but review all my records and feels Cleveland may have overlooked my heart and thinks I have cardio myopathy, which I feel was ruled out 2 times and if I did why or would anyone let a patient come home unaware with that fact? Now upset with all of these docs and 2 pulminary fuction test that say I smoked those test for my age and weight, I go to yet another doc, a russian pulm/sleep med doc, he is the one now that suggested I do not use bipap ONLY O2, since I need a negative pressure to operate lungs correctly, and NOT put an increased load on my heart, SO the last 2 days I tried that, BP a little lower than normal 106/61 give or take, BUT to this day and 120,000 dollars latter I HAVE NO ANSWERS, ON MY UNDERLYING CONDITIONS FROM DAY 1, SOB, fatique, leg swelling with pitted edema x3, worst latter in day upon standing than waking up to mention!
NOW, my wife is a charge nurse that has seen it all, and her and I are at wits end or what and why and NO answers.
Lets mention I am a 52 yr old male, a competitive powerlifter that weighs 260 has 14% bf right now, and this is what everyone goes to, YOU ARE A BIG THICK MAN, maybe you have 2 much muscle to work correctly, whereas, I have hundreds of friends in the sports field BIGGER than myself and NONE has the 3 problems I have, BUT yet I get called OBESE at every doctors office, cause I am a big muscular man and NOT FAT! Need anything else feel free to ask me, at least here it cost ZERO for advice, as I said I am now $120,000 into this with NO answers about my condition other than I have severe sleep apnea

j n k said:

Like Rock C. said, you gotta go with a doc you trust looking right at you and at your medical history. I just hope the doc has an RRT like Rock to throw ideas at him.

For example, I wonder if the doc has considered increasing your differential, your pressure support, in order to lessen the work of breathing? There may be reasons not to do that in your particular case, but it may be an idea worth mentioning to the doc.

The doc and RT should know that ResMed autobilevels work with a non-varying pressure support, so that brand can be set up to be in auto mode in a way that EPAP and IPAP vary, or roam, but the distance between them does not. That means a pressure-support differential of up to 8 cm H2O, or so, can be programmed into the machine without that affecting the efficacy of the PAP therapy.

This gets into the weird area where the use of the machine for sleep can help or hinder other medical conditions, so it takes a sleep-pulmo/RRT team who can think outside the box (or in this case, inside the blower).

I don't think it would hurt to ask about the idea of using a ResMed autobilevel set with a large PS just to make sure your team has thought of that possibility. Do so as a question and with a lot of humility. And whatever you do, for your sake, you might not want to mention that it is something your read about on the internet! :-) Docs HATE that.

jeff

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Permalink Reply by robert cooper on September 13, 2009 at 10:54am

I know how to change my machine if anyone here feels it is NOT right just tell me, I will at this time try anything someone with the knowledge has to tell me to try..............

robert cooper said:

OK, sorry for no med background I am a little upset here at my medical professors, I had a complete heart workup at Cleveland Clinic along with pulmonary pressures, they said after the work up I AM SORRY MR COOPER I DO NOT KNOW WHAT TO DO FOR YOU, still with leg edema x3, still fatigued, still SOB, and they say that? Then my local pulm/sleep doc said after having me do a cpap for 6 months with NO results, YOU ARE BEYOND MY RELM, YOU NEED TO GO TO A BIGGER CITY WHERE THEY SEE AND KNOW MORE, so I did went to Pittsburgh, where I went to UPMC lung center, did a new sleep study got on BIPAP said better for me, and used since easter, ONLY thing BP came down THAT is it, still tired, so they did a startdust test saying I was NOT having O2 saturation as I needed 70% without bipap, 92% with so O2 was ordered along with Bipap, now using both I still see and feel no difference, NOW UPSET I go to another UPMC cheif PULM DOC, where he does NOTHING but review all my records and feels Cleveland may have overlooked my heart and thinks I have cardio myopathy, which I feel was ruled out 2 times and if I did why or would anyone let a patient come home unaware with that fact? Now upset with all of these docs and 2 pulminary fuction test that say I smoked those test for my age and weight, I go to yet another doc, a russian pulm/sleep med doc, he is the one now that suggested I do not use bipap ONLY O2, since I need a negative pressure to operate lungs correctly, and NOT put an increased load on my heart, SO the last 2 days I tried that, BP a little lower than normal 106/61 give or take, BUT to this day and 120,000 dollars latter I HAVE NO ANSWERS, ON MY UNDERLYING CONDITIONS FROM DAY 1, SOB, fatique, leg swelling with pitted edema x3, worst latter in day upon standing than waking up to mention!
NOW, my wife is a charge nurse that has seen it all, and her and I are at wits end or what and why and NO answers.
Lets mention I am a 52 yr old male, a competitive powerlifter that weighs 260 has 14% bf right now, and this is what everyone goes to, YOU ARE A BIG THICK MAN, maybe you have 2 much muscle to work correctly, whereas, I have hundreds of friends in the sports field BIGGER than myself and NONE has the 3 problems I have, BUT yet I get called OBESE at every doctors office, cause I am a big muscular man and NOT FAT! Need anything else feel free to ask me, at least here it cost ZERO for advice, as I said I am now $120,000 into this with NO answers about my condition other than I have severe sleep apnea

j n k said:

Like Rock C. said, you gotta go with a doc you trust looking right at you and at your medical history. I just hope the doc has an RRT like Rock to throw ideas at him.

For example, I wonder if the doc has considered increasing your differential, your pressure support, in order to lessen the work of breathing? There may be reasons not to do that in your particular case, but it may be an idea worth mentioning to the doc.

The doc and RT should know that ResMed autobilevels work with a non-varying pressure support, so that brand can be set up to be in auto mode in a way that EPAP and IPAP vary, or roam, but the distance between them does not. That means a pressure-support differential of up to 8 cm H2O, or so, can be programmed into the machine without that affecting the efficacy of the PAP therapy.

This gets into the weird area where the use of the machine for sleep can help or hinder other medical conditions, so it takes a sleep-pulmo/RRT team who can think outside the box (or in this case, inside the blower).

I don't think it would hurt to ask about the idea of using a ResMed autobilevel set with a large PS just to make sure your team has thought of that possibility. Do so as a question and with a lot of humility. And whatever you do, for your sake, you might not want to mention that it is something your read about on the internet! :-) Docs HATE that.

jeff

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Permalink Reply by robert cooper on September 13, 2009 at 10:57am

oh and forgot to mention, I have had ct scans of chest and abdominal all ok, and complete liver and kidney workups all ok!

robert cooper said:

I know how to change my machine if anyone here feels it is NOT right just tell me, I will at this time try anything someone with the knowledge has to tell me to try..............

robert cooper said:

OK, sorry for no med background I am a little upset here at my medical professors, I had a complete heart workup at Cleveland Clinic along with pulmonary pressures, they said after the work up I AM SORRY MR COOPER I DO NOT KNOW WHAT TO DO FOR YOU, still with leg edema x3, still fatigued, still SOB, and they say that? Then my local pulm/sleep doc said after having me do a cpap for 6 months with NO results, YOU ARE BEYOND MY RELM, YOU NEED TO GO TO A BIGGER CITY WHERE THEY SEE AND KNOW MORE, so I did went to Pittsburgh, where I went to UPMC lung center, did a new sleep study got on BIPAP said better for me, and used since easter, ONLY thing BP came down THAT is it, still tired, so they did a startdust test saying I was NOT having O2 saturation as I needed 70% without bipap, 92% with so O2 was ordered along with Bipap, now using both I still see and feel no difference, NOW UPSET I go to another UPMC cheif PULM DOC, where he does NOTHING but review all my records and feels Cleveland may have overlooked my heart and thinks I have cardio myopathy, which I feel was ruled out 2 times and if I did why or would anyone let a patient come home unaware with that fact? Now upset with all of these docs and 2 pulminary fuction test that say I smoked those test for my age and weight, I go to yet another doc, a russian pulm/sleep med doc, he is the one now that suggested I do not use bipap ONLY O2, since I need a negative pressure to operate lungs correctly, and NOT put an increased load on my heart, SO the last 2 days I tried that, BP a little lower than normal 106/61 give or take, BUT to this day and 120,000 dollars latter I HAVE NO ANSWERS, ON MY UNDERLYING CONDITIONS FROM DAY 1, SOB, fatique, leg swelling with pitted edema x3, worst latter in day upon standing than waking up to mention!
NOW, my wife is a charge nurse that has seen it all, and her and I are at wits end or what and why and NO answers.
Lets mention I am a 52 yr old male, a competitive powerlifter that weighs 260 has 14% bf right now, and this is what everyone goes to, YOU ARE A BIG THICK MAN, maybe you have 2 much muscle to work correctly, whereas, I have hundreds of friends in the sports field BIGGER than myself and NONE has the 3 problems I have, BUT yet I get called OBESE at every doctors office, cause I am a big muscular man and NOT FAT! Need anything else feel free to ask me, at least here it cost ZERO for advice, as I said I am now $120,000 into this with NO answers about my condition other than I have severe sleep apnea

j n k said:

Like Rock C. said, you gotta go with a doc you trust looking right at you and at your medical history. I just hope the doc has an RRT like Rock to throw ideas at him.

For example, I wonder if the doc has considered increasing your differential, your pressure support, in order to lessen the work of breathing? There may be reasons not to do that in your particular case, but it may be an idea worth mentioning to the doc.

The doc and RT should know that ResMed autobilevels work with a non-varying pressure support, so that brand can be set up to be in auto mode in a way that EPAP and IPAP vary, or roam, but the distance between them does not. That means a pressure-support differential of up to 8 cm H2O, or so, can be programmed into the machine without that affecting the efficacy of the PAP therapy.

This gets into the weird area where the use of the machine for sleep can help or hinder other medical conditions, so it takes a sleep-pulmo/RRT team who can think outside the box (or in this case, inside the blower).

I don't think it would hurt to ask about the idea of using a ResMed autobilevel set with a large PS just to make sure your team has thought of that possibility. Do so as a question and with a lot of humility. And whatever you do, for your sake, you might not want to mention that it is something your read about on the internet! :-) Docs HATE that.

jeff

• ▶ Reply

Permalink Reply by Judy on September 13, 2009 at 11:16am

Well, thank you. That helps to clarify things a bit. Man, if you've given Cleveland Clinic a shot at you and they missed .....

Do you eat a lot of salt? I assume you have had the "in the box" pulmonary function test, not just the spirometry? How tall are you?

I'm just a patient, not a medical professional, so I wonder, can you build up so much muscling in the neck, and such strong, hard muscle, that that could be contributing to the problem? Have you been examined by a GOOD Ear, Nose, Throat specialist? Perhaps all that muscle buildup is combined w/a smaller, narrower than "normal" throat opening? If you haven't seen an ENT, maybe that should be your next step?

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Permalink Reply by robert cooper on September 13, 2009 at 12:02pm

No I do not eat anymore salt that is in normal food, and YES they say my neck is very big and thick and had a xray to see why apnea is going on, and they did not know, they wanted me to come back for neck measurements which I did not go, thought anyone could read an xray! Yes I had in the box latest and out of the box before that all ok they said in flying colors they said, I am 5'10" and I have even heard that I have extra muscle thickness and it is shoving my guts up and into my lung area, the last doc said I had to be standing for me to get a whole lung usage, found out by 93 pilse ox sitting and a 99 standing, but that was ONLY the last so called quack that told me NOT to use my bipap at all, NOW do not take me to be this huge man with bulging muscles everywhere, I am big but like a powerlifter, by no means anything like the dudes in the magazines which I bet they do not even have my problems, and yes my wife a nurse even looked and said her opening in her mouth is way larger than mine, it is small, so now what///////////

Judy said:

Well, thank you. That helps to clarify things a bit. Man, if you've given Cleveland Clinic a shot at you and they missed .....

Do you eat a lot of salt? I assume you have had the "in the box" pulmonary function test, not just the spirometry? How tall are you?

I'm just a patient, not a medical professional, so I wonder, can you build up so much muscling in the neck, and such strong, hard muscle, that that could be contributing to the problem? Have you been examined by a GOOD Ear, Nose, Throat specialist? Perhaps all that muscle buildup is combined w/a smaller, narrower than "normal" throat opening? If you haven't seen an ENT, maybe that should be your next step?

• ▶ Reply

Permalink Reply by Judy on September 13, 2009 at 1:15pm

Your wife has given you a good clue. See a GOOD ENT to see what a professional has to say about your throat anatomy. Therein may lie the key to your entire set of problems.

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Permalink Reply by Mack D Jones, MD, SAAN on September 13, 2009 at 11:56pm

What is your AHI on PAP? I haven't seen any numbers. If it is 0, then the machine is doing exactly what it is supposed to be doing. If you are still obstructing, then that issue must be resolved as Judy suggested, and then your symptoms may improve.

If your symptoms persist in spite of adequate PAP treatment then you obviously have something else going on that must be evaluated, diagnosed and treated appropriately by a neuro sleep specialist with an internal medical background.

Your dilemma sounds somewhat like what I experienced in my book "Deadly Sleep." Don't get me wrong. I am not saying that you have what I had, but when every avenue has been checked out and nothing has been found to account for your symptoms, then it's possible that your symptoms are due to axonal injury similar to what a group of 41 OSA patients ages 39 to 52 had on their MRI-DTI brain scans reported in Sleep July, 2008. I didn't have a scan because they are not available except to large groups of patients in research studies. Since I am a neurologist, I diagnosed myself (you will have the read the book to understand how I did it). But you don't need a scan because the treatment is adequate PAP treatment that you are (hopefully) already on. With time these lesions have a chance of getting better. I have gotten better, so I assume that my suspected brain lesions have improved.

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Permalink Reply by Judy on September 14, 2009 at 9:02am

You may well have made a mistake by not going back for those neck measurements! I would suggest you go to the cpaptalk.com forum and search on posts by jskinner. James has had a HORRIBLE time getting proper therapy and Dx. He has posted diagrams as well as films of this throat and airway and FINALLY after some 3 years or so of SUFFERING has a Dx and suggested therapy - unfortunately, he is Canadian and getting the approval - or the out of pocket money - for treatment in the US he hasn't been properly treated - yet. Still his story just might put you on the track to discovering the root of your problems.

Again, tho, I ask if you've gotten all of your sleep evaluations and titrations reports, not just the doctor's dictated results but also the full scored data summary reports - and it MAY even be possible to get a CD of the entire actual in-lab sleep evaluations and titrations. I would assume since your wife is a charge nurse that you most likely have done so - but just in case I had to ask.

By the way, James is no dummy. He wrote the EncoreAnalyzer freeware to supplement the pre-v.8 EncorePro software and My Encore freeware which greatly enhances the data produced by those versions of EncorePro..

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Permalink Reply by Rosie V on September 14, 2009 at 10:38am

my cpap of 11cmH20 was the best thing to ever happen to me

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