Concerned about machiine change

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Permalink Reply by 99 on December 9, 2009 at 12:00pm

No one can garuntee anything at any time anywhere all they can say is there is a strong likely hood of it working due to past experience

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Permalink Reply by j n k on December 9, 2009 at 2:49pm

You raise many issues.

One is GERD, perhaps silent GERD, and your lower esophageal valve. That is one issue. People who have had obstructive apnea sometimes damage that valve from repeatedly exposing it to stomach contents because of the negative pressure in the esophagus. Damage to that valve can then allow the stomach to fill with air during PAP therapy. There is surgery for that, I believe, though.

Central apnea of the sort you describe is generally caused by something. What is the cause? Is that cause something that can be treated? If not, the machine for you would likely be some sort of ASV machine, not just a BiPAP S/T, I would think, depending on the nature of the central apneas.

Autobilevel might help with the air-swallowing problem, but I think autobilevel can be problematic if the centrals are pressure-related. Are they pressure-related? Is your ratio of obstructive events to central events something from one night of increased pressures, or is that a long-time ratio?

Those are my initial thoughts as a fellow patient, and I ask those questions not so much to have you answer me (I wouldn't know what to do with the answers, myself, anyway, frankly) but more as suggestions of things you may want to ask your doctors for some clarification on so you can be fully aware of what they are thinking in your particular case.

jeff

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Permalink Reply by Pam McReynolds on December 9, 2009 at 4:06pm

Thank you for your comments 99 and jnk.

We are still working on trying to figure out what is causing the central. There are some other things going on that might be the source and hopefully will have some answers in the near future. It may have to do with bulging disks in my neck that are pressing on the spinal cord, but I also have nodules on the thyroid, and with the GI stuff, it might be a combination.

I had researched and found what you are telling me about the ASV machine, but the insurance company has guidelines. Start with CPAP then go to BiPap, then CSV. How crazy. I am just frustrated by all this and a bit discouraged by all the side effects and not knowing yet why I am having so much central as opposed to obstructive.

Thanks for your support.

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Permalink Reply by j n k on December 9, 2009 at 5:10pm

It can be a delicate balance to put pressure on your medical team while remaining cooperative and calm through what you are suffering. There are ways to play the insurance company's game, but to do it quickly, if you and your doctors are on the same page about doing it.

Does the machine you use give you efficacy data? It would be interesting to know what your home-machine estimated AHI is, in case your number of events fluctuates night-to-night.

Be sure your doctors know you are very interested in knowing the cause(s) of the centrals and are very interested in addressing them, then ask what you can do to cooperate with moving the process along.

Taking a methodical approach when there are many medical issues interacting can be difficult, but the PAP therapy part of it should be something your doctors let you take an active role in, as far as monitoring your data and balancing machine pressures, if that is something you are comfortable doing.

It is so hard to take a holistic approach to things when docs are all into their specialties, but a good primary physician who can look out over the trees to see the forest can be priceless in situations like yours. Sometimes changing primary physicians or sleep docs is worth it when precious time is a-wasting and no answers seem forthcoming. You may want to set a date when your patience has officially run out and you have to try something else in the way of medical teams.

But enough of my spouting.

I wish you the best with it and hope you continue to get good help from the sleep apnea forums.

jeff

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Permalink Reply by Judy on December 9, 2009 at 6:46pm

And, suspicious soul that I am I would request and insist on receiving a copy of not just the doctor's dictated results (1-2 pages) but also the full scored data summary report w/condensed graphs (5+ pages), sometimes called the full disclosure report from my sleep EVALUATION sleep study. Yep, the PSG w/o xPAP! I wanna see FOR MYSELF how many central and mixed apneas I had BEFORE ever being put on CPAP.

They are part of your medical records and as such, assuming you are in the USA, you have a LEGAL RIGHT to them under HIPAA.

Actually, trusting soul that I am (NOT) I would request and insist on both report copies from EVERY sleep study I had done, whether sleep evaluation or titration AND a copy of EACH prescription and prescription change. I'm one who wants to see if my central and mixed apneas increase or decrease w/each xPAP and each pressure change titrated and ordered.

You have my DEEPEST SYMPATHY for that two solid months of nausea!!!! I fear nausea more than pain. When my Crohn's disease first struck I was nauseated 24 hours a day, seven days a week for 2 and 1/2 years. I swear I vividly remember every single second of that 30 months!!!!! Even just the "queasies" can put me in a panic yet today. And nausea can drive me to tears in no time. I just have no tolerance for nausea left in me. (((hugs))))

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Permalink Reply by Pam McReynolds on December 10, 2009 at 4:53am

It is difficult to remain patient, that's for sure. In the last year, I have accumulated 9 new doctors - sleep, heart, GI, thyroid, cervical spine. It's funny, but it's not.

It all started with thinking I had a kidney stone. Turned out my lipase and amalayse were eleveated and I was off and running. First it was GI doctors, started with one then wound up going to an even more specialized one. Then my new primary physician found a heart murmur. Yep, off to the heart specialist. Two slightly leaky valves, but heart so strong I have only a 2% risk of heart disease.

Did I mention I'm a runner? In the midst of all this I trained for the Knoxville Marathon, but I only trained to run the Half Marathon. So, then my husband mentioned to her that even though I'm a runner, I get winded when walking up the hill in our back yard or climbing a flight of stairs. Off to the lung doctor, which is where we were told we needed a sleep study and discovered I have apnea. Oh, by the way, the lungs are great.

My concern about the central apnea and soreness in my neck sent me in for an MRI of the brain and cervical spine. Found nothing in the brain (my husband said he could have told me that), but the cervical spine is a bit messed up. Two bulging disks touching the spinal cord and a couple other things. But hey, guess what?!?!?!? Yep, they found something else. The thyroid has suspicious nodules on it. The report said they need to be looked at. More tests. I am now being monitored and will have a fine needle aspiration done when they reach a certain size.

Along with all that, she was worried about my platelet levels, which I have had low platelets for most of my life. You guessed it, she sent me to another specialist.

I have had so many MRI's, Cat Scans, and X-rays I glow. The girls in the lab know me by name, even when they see me out in public because of all the blood they've taken from me. And my wallet is stuck in the open position from all the co-pays I've shelled out. But the interesting thing is, I'm still moving along and not freaked out about any of it, except this silly BiPap and not wanting to get sick from it.

My doctors are all wonderful and are working closely with me trying to figure things out. They all give me my reports and records for my personal files and have been great about letting me be a part of my own health care. I am fortunate to have a team of doctors who are working so closely with me. My primary physician hugs me every time I go in. She is the best doctor I've ever had. She's fresh out of medical school and is doing a fine job (almost too good) at finding all the things going on with this young almost 50 year old.

I'm really glad I got on this forum. It's helping just to put it all down and to hear from others. I am seeing from what I've read on some of the other members comments, that I am truly blessed with the group I am working with and need to not be such a big baby about it. :)

Thanks again 99, Jeff, and Judy for your support.

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Permalink Reply by j n k on December 10, 2009 at 5:46am

Thank you for posting all that. It is a relief to hear it, and we don't get enough stories on these forums of good docs doing what good docs do.

My wife runs half marathons, too. To our way of thinking, that is about the right length.

Do you have any problems with pain beyond soreness in your neck? Do you take meds? (Sometimes those things can show up as centrals, I think.)

What is your average AHI at home? What were the exact findings of the diagnostic sleep study? What are the details on the leaky valves? Has a neurologist found any neurological problems attributable to the neck? Are hormones in a state of flux right now?

The only thing you've said that I disagree with is the joke you made about 'not being such a big baby.' Sure, I laughed. But it sounds to me like some things are being identified that it is good for you and your doctors to know, whether they are active issues or related to your present circumstance or not. We should all be such big babies. :-)

I admire your attitude about seeing the blessings in your experience.

Given what you've said, everything makes sense as far as not jumping directly to ASV. That's the sort of machine you use only if you have to, and not just because of how insurance feels about them. If your centrals aren't all that bad and aren't directly pressure related, autobilevel would be something I would want to give a try before trying an ASV, myself, given the aerophagia situation. For some, bilevel solves the aerophagia completely, if the EPAP can be lower than the straight PAP pressure was. For others, bilevel can aggravate the problem. So you'll just have to see. May depend on the condition of your LES.

jeff

ps- Hey, MOLLETE, please feel free to jump in here, since I am, as usual, in WAY over my heard.

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Permalink Reply by 99 on December 10, 2009 at 6:09am

ps apart from the problems mentioned your fine

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Permalink Reply by Mary Z on December 11, 2009 at 5:18am

About Central Apneas- how are they treated any differently than OSAs? I realize because y'all keep saying that from the full result sleep studies one can tell central vs. obstructive events. Would someone mind explaining this a bit better for me, please? How do you tell the difference when reading the sleep study and how are centrals treated differently?
And Pam, good luck and thanks for posting.
I empathize with you. Sounds like you're doing all the right things. Hankg in there and please keep us posted.

Thanks,
Mary Zimlich

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Permalink Reply by j n k on December 11, 2009 at 5:41am

Central apneas are apneas that start in the brain, not the airway. They are listed in the results from the sleep study, since central apneas can be accurately differentiated from obstructive apneas by the tech scoring a lab-based sleep study based on things like the belts that go around your torso to measure breathing effort.

When the root of a person's problem is obstruction, you do something to prevent the obstructions, and things get better. But when the root of the problem involves the brain's not sending the signal to tell the body to breathe, that may have to be examined and addressed specifically, if it happens a lot.

When the usual forms of PAP treatment don't solve the problem with centrals, or when PAP treatment for obstructions seems actually to cause an inordinate amount of centrals, even weeks after a person has started PAP, specialized machines or medicines may be needed.

It is important to remember that, from a home-machine point of view, a few central apneas now and then is no big deal, because there are perfectily natural and healthy reasons for someone to pause in their breathing when they are asleep. (A pause after a sigh, holding one's breath while turning over or in response to chronic pain, for example.) Also, when a person first starts PAP therapy (such as during a titration study), it is common for there to be some centrals as the body/brain gets used to breathing with PAP, and those usually stop happening after a while, for most people. Centrals are only a problem when there are a lot of them, because they can affect oxygen saturation in the blood and the like. And having a lot of centrals, or odd breathing patterns during sleep that aren't obstruction related, may be an indication of an underlying problem with the heart or nervous system that needs to be addressed.

My wording above is, I'm sure, an oversimplification based on my understanding as a patient, so I'm sure I messed up some of the medical terminology above, and that could be misleading. But hopefully that gives you some idea and some ideas of what to research on your own in understanding central events.

jeff


Mary Z said:

About Central Apneas- how are they treated any differently than OSAs? I realize because y'all keep saying that from the full result sleep studies one can tell central vs. obstructive events. Would someone mind explaining this a bit better for me, please? How do you tell the difference when reading the sleep study and how are centrals treated differently?
And Pam, good luck and thanks for posting.
I empathize with you. Sounds like you're doing all the right things. Hankg in there and please keep us posted.

Thanks,
Mary Zimlich

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Permalink Reply by Pam McReynolds on December 11, 2009 at 7:23am

Good questions Mary. Excellent, and easy to understand response Jeff.

Had my first night on the new BiPap machine last night. Not thrilled, but will keep trying. It wasn't all bad, but had to take off about 3:30 a.m. because I was filling up with air and couldn't take it any more. I think I will try using a sleeping pill this evening to help me relax and let the machine do its work. I'm sure I will get used to it with time. Might need the pressure lowered a bit in a few weeks if the air thing keeps happening. Will see what GI doctor and sleep doctor have to say about it.

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Permalink Reply by Mary Z on December 11, 2009 at 7:53am

Thanks Jeff, very understandable.

Mary Z.

j n k said:

Central apneas are apneas that start in the brain, not the airway. They are listed in the results from the sleep study, since central

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