NEED HELP FROM EXPERTS PLEASE

I just came from a sleep center /pulmon. DOC and I am to say the least startled and now PUZZLED at what to do.
I am on a BIPAP now set at 12-19 with 3 diff and an auto. I was told by this DOC NOT TO USE my bipap anymore just use my nasal O2, he said this machine was putting a positive pressure in my lungs and the lungs were designed to operate on a NEGATIVE pressure and thus would make my heart work MORE?
Is this man crazy or are the others that put me on a BIPAP for SEVERE apnea?
ONLY thing since my use since EASTER was my bp came down 30 points, still tired, still legs swollen, still shortness of breath.

SO WHAT AM I TO BELIEVE HERE FOLKS??????????????????????

Hi,

CPAP works on positive pressure. If you have obstructive sleep apnea, positive pressure is one of the currently accepted treatments. If they are telling you that CPAP in general is bad, then I think the person who told you that is crazy. Is CPAP the right treatment for you? That is something that a sleep doc is going to have to diagnose and prescribe. If your current doctor seems nutty, then find yourself a different doctor. There are good ones out there.

-john-

what are all your medical diagnoses?

what other tests have been run?

what is the explanation for the edema?

and as I said in chat, if you don't like what this doctor said, find another one - I agree with John on that one all the way -------

As per Jules... what are your other diagnoses? Do you have COPD? Congestive Heart Failure?

Ask your MD to explain again about the pressure and Cpap because this is not the place for you to be questioning that now. You said your doctor told you that your lungs operate on positive pressure. Someone here confused that by arguing that Cpap operates on positive pressure, and then others have followed through with advice derived from that statement, completely sideways from what the doctor said. This is a great example of how rumors, for instance, become completely unrecognizable after being passed along even to only a few people, and when you're dealing with a serious condition (CHF?) you need to be very careful about who you go to for advice.

That being said, your doctor may not be either understanding or explaining things to you well, so by all means ask another doctor about it .

The only advice that has been posted so far is to get a second opinion. That is responsible posting by the members, IMO.

In the medical profession there is a huge gap in knowledge of sleep apnea and its treatment. Your current doc may be part of that gap.

Patient forums are very valuable for helping with treatment of known conditions. Patient forums are not good for diagnosing conditions. My advice also is to get a second opinion from a doctor very familiar with sleep apnea and its treatment.

In addition to what Rooster said, this is the place if you get the software and place your results folks (not me I'm a newbie) can give you pointers on how to adjust machine to give better CPAP results. But yes, please get a 2nd opinion. OSA is a relatively new medical area, and unfortunately many physicicans are not up to speed on it.

I have been to 3 sleep doctors which 1 said I needed cpap, and it did not work more problems with it than without, then another 2 said after another sleep study I needed bipap, which I said did bring down BP ONLY, still tired and NO ONE out of 6 doctors has explained the edema in my legs they say it may be a by product of sleep apnea, I have had my heart went through both sides, had 2 pul function test stress test, just about everything you could dream of, AND NO ONE OUT OF MY DOCTORS HAS GIVEN ME ANY HOPE OF WHAT OR WHY I HAVE THE EDEMA,TIREDNESS,OR SHORTNESS OF BREATH..............This is so frustrating to me you all cannot believe, I mean good hospitals like UPMC, and UPMC Lung center, Cleveland Clinic, all with I AM SORRY I DO NOT KNOW WHAT TO TELL YOU !!!!!!!!!!!!!!!!!!
so when you been to all of these where is it I go next?

Let me take it a little further for your review, I went to Cleveland Clinic had complete heart workup, where they went inside both areas of heart, and into my lungs, they released me from there saying MR COOPER I DO NOT KNOW WHAT TO TELL YOU I SEE NOTHING THAT WOULD GIVE YOU THOSE SYMPTOMS AND RELEASED ME, then I go to UPMC where I had 2 pulminary fuction test along with blood gases, all ok in fact hey said I blew it away for my age and weight! Then I had complete kidney and liver workups, all ok, BUT a couple of docs kinda wandered about cardio myopathy, BUT would Cleveland Clinic let a man leave with this medical condition? I do not feel so, it would then be there liability! Went to UPMC chief Pulm. Doc and he ONLY reviewed my records and did nothing even after seeing the pitted edema and my shortness of breath, BUt did a stardust test saying that without the bipap my O2 sat. was 70% with bipap 92% and then added 2L of O2 along with Bipap, and now that is where I am at now, Only I went to yet another doc and he is the one that said I should not be using the bipap due to it overworks your heart, cause you need a negative pressure in lungs to work properly. That is where I am at right now after spending over $120,000 and I have no more diagnosis than I had when I started other than I found out I have severe sleep apnea................

daddycoop wrote:. Doc and he ONLY reviewed my records and did nothing even after seeing the pitted edema and my shortness of breath, BUt did a stardust test saying that without the bipap my O2 sat. was 70% with bipap 92% and then added 2L of O2 along with Bipap, and now that is where I am at now,

Sounds like he figured that considering your symptoms, with 92% you don't have enough margin for error.

Only I went to yet another doc

Why? What made you go to another one? How long did you try the BIPAP with oxygen?

and he is the one that said I should not be using the bipap due to it overworks your heart, cause you need a negative pressure in lungs to work properly.

How long between the "add oxygen" doctor and the "no-bipap" doctor?
Did he examine you? Did he give you a written diagnosis and Rx? What makes him worried of overworking your heart?

That is where I am at right now after spending over $120,000 and I have no more diagnosis than I had when I started other than I found out I have severe sleep apnea................

Severe sleep apnea can be very very very damaging to your health, including your heart.

Are you extremely overweight? Extreme overweight may cause a condition called "Obesity Related Hypoventilation" -- which can happen during the day, and be worse at night. Obesity Related Hypoventilation can affect your heart too. Find a doctor you trust, make sure you understand him or her, and follow their instructions.

O.

daddycoop wrote: ......my shortness of breath, BUt did a stardust test saying that without the bipap my O2 sat. was 70% with bipap 92% and then added 2L of O2 along with Bipap, and now that is where I am at now, Only I went to yet another doc and he is the one that said I should not be using the bipap due to it overworks your heart, cause you need a negative pressure in lungs to work properly. That is where I am at right now after spending over $120,000 and I have no more diagnosis than I had when I started other than I found out I have severe sleep apnea................

I have told you an internet forum is not a good place to get a diagnosis and I will not make a diagnosis, but I will make some comments on what you posted.

You mentioned four problems:

1. Edema
2. Fatigue
3. Shortness of breath
4. Sleeping (my assumption) blood-oxygen level is 70% (with BIPAP 92%)

Sleep apnea could easily cause the fatigue. Shortness of breath and edema are not typically reported as side effects of sleep apnea but sleep apnea affects every cell in the body so who knows what all the damage could be.

With all the tests and evaluations by different doctors, would it be possible for you to find a good internist to take your case and coordinate everything? The internist can also offer second opinions on some of the things you are being told and cooordinate among the specialists. This is what internists are supposed to be good at.

I can't say for your case, but if my blood-ox levels sleeping were 92% with BIPAP and 70% without, I would damn make sure I knew exactly what to expect and why before I discontinued BIPAP. 70% is devasting and if you have obstructive sleep apnea, supplemental oxygen alone may not be very effective.

Please let us know about your weight and height.

Yes, it can be frustrating working with doctors and even the best of them make mistakes and have gaps in knowledge.

daddycoop wrote:...pitted edema and my shortness of breath

Not a doc...just my experience. Had malignant BP when diagnosed with OSA...sudden and very high pressure; also had pitting edema, which I'd never had before. Doc put me on a diuretic & low-sodium diet -- I lost 7.5#s overnight; I scheduled appt with sleep doc. 1 month later edema and BP better but not good; doc added an angiotension receptor blocker which worked (surprisingly the ARBs are effective for the hypertension created by mid-level altitude oxygen deprivation). Finally got a PSG & CPAP. Took 18 months or so but now BP is normal. I've lost 53#s of my excess wt with lots more to lose. But, I still have some mild edema sometimes pitting, still take a diuretic, and still eat a moderate sodium diet; the days I have more edema, I am also short of breath...been investigated, it's the edema. Docs think the edema is from the excess wt I still have but that's a guess which they freely admit; it could also be some weird side-effect of the washout of the minerals that occurs from the diuretic so I take a glut-load of supplements, esp potassium which I cannot seem to retain (daily low-sodium V8, tomatoes, & parsley on everything for their potassium). Quarterly bloodwork always tests minerals. I sleep propped up on pillows so the edema doesn't flow into chest and airways when I lie down. My primary, sleep doc, and cardio know what I am taking and why and support my decisions so far. If you have excess wt or are taking a diuretic, have you had your mineral levels tested? My potassium is low normal BUT I seem to be especially sensitive to very small changes and get tingling along nerves, shaking, weakness, light-headed, then freak out and get short of breath as a result of the anxiety...doesn't matter that I know it's likely just a flux in my potassium levels, it's scary as hell. BTW, too little potassium is extremely serious but if your kidneys have any impairment then too much potassium is also waaay serious. Electrolyte disturbances are not fun to deal with.

Now, that shared, I have no idea if this might apply to your situation which sounds much more complicated than mine...but it might be a something to investigate with your primary doc IF you haven't already explored this area.

i am 5'10" tall weigh 270, and 14% body fat, I have very little to loose, and YES I have had my levels of minerals and such checked, all OK, but thank you for the info, and I know nobody here can do anything but comment, YOU NEVER know there may be another out there that has exactly what I have, my docs here are practicing physicians, and do just that PRACTICE.............

daddycoop wrote:...docs here are practicing physicians, and do just that PRACTICE.............

Ain't it the truth . Good luck finding answers/resolutions. Post it when ya find it so we'll all learn.

I also have idiopathic edema. Seems it is better when my sleep is better. The 40mg of Furosemide kept being increased until 160mg didn't budge me. I was utterly miserable, and of course, more short of breath than usual. My doc added Metolazone to be taken 1/2 hour before the Furosemide. Said something like it preps the kidneys for the Furosemide. That was the answer for me. For several months now I often don't even need the Furosemide, but some days do take just one 40mg tablet. It's rare I need 2.

All I know is if what they're giving you isn't working, it may be time to try something else. I haven't had a spell of the weeping edema since the new regimen. Just wish he'd prescribed the change sooner - suffered too long trying to just take more of the same.

While I'd hate to muddy the waters further, you could consult a cardiologist about the other doc's claim about your bipap being hard on your heart. So is severe apnea and low oxygen, so stopping wouldn't be something I'd do on that one doc's say-so, when other doctors have said you need it. I agree that having one doctor coordinate your care sounds like a good idea. Best wishes in finding answers that will allow you to progress in improving your health.
Kathy