Advice for Newly diagnosed Sleep Apnea patient

[Leinie]

I have had muscle soreness, achiness, headaches and been exhausted all the time for many many years. I have seen many doctors, neurologists, cardiologists, chiropractors, etc. I have had cat scans, xrays, blood tests to numerous to count, and just about any other test anyone could think of. And every time, nothing. I was starting to think it was all in my head, or I was some sort of hypocondriac freak. But my wife has noticed my energy decreasing over the years, and kept pushing. We were thinking Fibromyalgia, and presented our case. She was very hesitant, but agreed to start some meds for Fibro, and ordered even more tests, many that were already done. Finally she suggested a sleep study. Then came an 8 week wait for a pulmonologist to see me and agree, then the test was scheduled for another 8 weeks out. However, there was a cancellation and I got in early! Wow, at 1am the tech woke me up and said "You have sleep apnea" I could not believe it. After more than 10 years (and I am only 34) I finally had an answer. My wife was so relieved shed cried.

Now the 1-2 week wait for the dr to read the study and order the cpap. This is quite the process. I am still skeptical, but that is really years of no answers talking, i am really hopeful.

Now to my questions. I have been trying to do some research before the DME contacts me about getting the equipment. I have read a lot of the posts here and I am leaning towards the Mirage Activa Mask and the Remstar Pro 2 CFlex. Do you agree these are good choices?

What do people think about the comfort Curve from Respironics?

I have a beard and mustache, but not very thick.

Also, what are the benefits of Heated Humidifiers? Should everyone use this? Should you start without it? How do insurance companies deal with this?

What is the benefit of Auto over Cpap with Cflex? Why are so many people saying the Drs are against it?

Any other advice would be greatly appreciated.

Sorry this is so long. I have so much to ask.

[neversleeps]

First of all, welcome!

Secondly, you are so wise to be asking all these questions in advance of your conversation with your DME! Many people find this forum only AFTER the decisions have been made for them!

Your questions can be answered in many ways. You can click on the word: CPAPopedia located towards the top of this page. It will give you many of the definitions you seek.

Another resource is through our hosts at https://www.cpap.com where you can read about and view the different products available.

Another method of obtaining information is by clicking the word: Search
at the top of this page and then entering the topics you are interested in:
Comfort Curve
Moustache
Heated humidifier
CFlex
etc.

In combination with the Search words, at the same time sort by author and look for threads posted by rested gal that reference LINKS in the title. She has compiled an excellent resource bank of information on many of the topics you're investigating.

A lot of the questions people have are difficult to answer definitively, because so many subjects are truly a matter of personal opinion and comfort. But reading through tons and tons of posts (time-consuming, but the very best way to learn) will give you a good feel for what you might want to discuss with your DME.

Good luck to you!

[Janelle]

The type of machine you get depends a lot on your pressures and your ability to exhale. For lower pressures a straight CPAP might be okay, but if you are in the midrange you might be more comfortable with an APAP which adjusts automatically for each event. This won't happen with a CPAP or BiPAP. If you have higher pressures and need the relief of lower pressures to exhale then a BiPAP would be a more logical choice or one of the RemStars with CFLEX. If you are having a lot of central apneas you might need a BIPAP ST. APAPs will work for many people but not for all.

The choice of mask is just as varied. Some people can't stand nasal pillows, some can't stand anything touching their face, some can't stand the more rigid headgear. Pressure of the mask can irritate some areas of the face on some and not on others. Faces are made differently, and while many of the masks are adjustable, sometimes they just don't adjust enough or in the right way to be comfortable for an individual.

Some of the forum contributors will swear they can't sleep on their side in one mask, while another swears that particular mask is wonderful for sidesleeping. Some will same a certain mask is extremely noisy and others will say it is not at all noisy. Sometimes it is a matter of adjustment, tightness or looseness of straps, position of nasal pillows or size.

In short, there is no pat answer for either machine or mask. Each person is an individual and has to find what works for them, no matter what another's opinion or the majority's opinion is of the product.

Your doctor will prescribe a certain type of machine, but probably not brand. It is your right to question why in particular he is prescribing that type of machine over another. Don't be afraid to ask questions. Don't be afraid to insist on seeing the results and copies of the reports. This is a patient's right. Even copies of reports from other doctors and correspondence with them is your right to read, too.

[jbelnap]

Great advice Janelle, can we copy and paste that onto all new patient's post? The mask decision is very subjective, and you won't be able to decide if your mask is good for you until you've slept with it for a week or two. If you can find a company that allows masks exhanges during the first 30 days, you'll be well off. It's hard to find, but sometimes availalbe. The remstar is a good machine for cpap or auto, the remstar bipap is a little noiser, but not bad by any standards. Your doctor will explain what kind of machine (cpap versus bipap) that you need and will change you if it doesn't work well. Your feedback to the doctor and the DME is extremely important if it isn't helping you. Most patient's feel an improvement in symptoms within a month of getting a minimum of 4 hours of sleep regularly. Of course more than 4 hours is better, but that's a good first goal. Of course everyone is different, but if it's going to help you, this is the average. You'll know if it's helping, and if you feel better, wearing it will not be a problem.
Joyce

[ahujudybear]

And don't overlook the Puritan-Bennett line of xPAPs. Their sensory tube and sensitivity settings makes this line of machines so much easier to breathe with than the others, which is very important if you have any muscle weakness that is affecting your breathing. And they are very compact for traveling.

- JB

[Janelle]

Permission to cut and paste approved.

Yes, please don't forget the Puritan Bennet line. I personally love my 420E APAP. Don't find it noisy, love the size because I travel a lot several times a month, and the weight is the lowest available by quite a bit.

The new Aeiomed product might rival the 420s but it will only be available in a straight CPAP. Since it is not yet available, no one knows how noisy it is how anything else about it. I would expect it to be at least as quiet as the majority of other CPAPs on the market.

There are other brands too, of machines, even though they are not that often mentioned on the forum. As competitive as the market is, I would think that nearly all machines are quite equal. They vary in a few bells and whistles like CFlex or the PB sensor tube, and the algorithm they use for the more sophisticated machines, but otherwise I would think would have to be overall reliable or no one would buy them directly or have them distributed by DMEs. One brand even comes in a variety of colors and has a rather unique profile.

[arthuranxious]

I am also a recently diagnosed sleep apnea patient, in a way my story is the opposite of the previous one. I thought nothing was wrong with my sleep, I was starting to worry about perhaps having mild depression, but was assured by the professionals that I didn't. I was worried about being overweight, and being unable to get done as much as I thought I could. And thought it odd that my neck sweated at night profusely while the rest of my body stayed dry. I discovered that they are all symproms of sleep apnea.
I am in limbo waiting for the second titration sleep study. It wa s not easy to find out exactly who will order my CPAP equipment, who will pick a DME, and how much input I will be able to have. I am still somewhat shocked that these are not items discussed much, despite the fact that there is an estimate that under 50% of patients use their equipment, probably due to being unhappy about comfort, noise or som otehr aspect. Each of us is spending, either directly or through our insurance, a minimum of $15,000 for two sleep studies, pulmonologist or sleep specialist, and equipment, we are entitled to some time with professionals who bother to explain to us what we are choosing.
I am hoping to be one of those who is very satisfied with my guesses, but thanks to these web user groups they will be informed guesses.

[neversleeps]

Spam has resurrected another thread. This one's over a year old.

[NightHawkeye]

I am still somewhat shocked that these are not items discussed much, despite the fact that there is an estimate that under 50% of patients use their equipment, probably due to being unhappy about comfort, noise or som otehr aspect.

Many folks are as shocked as you, arthuranxious, but those compliance numbers come from distinguished journals. The saddest part of all is that the medical community in the US isn't terribly concerned about the efficacy of apnea treatment. (Please don't FLAME me. The simple fact is that if the medical community were concerned about the effectiveness of treatment, then they would be taking steps to correct the problem. They are not.)

Also, arthuranxious, you need to know that the lack of effectiveness is less a comfort issue, than the prescribed treatment being ineffective, intolerable, or downright destructive in other ways. As you read through the forum you will find stories of things which can go wrong with xPAP treatment. This stuff is not always easy. Sure, there are some folks who find it easy, but there are also a large number who have had to resolve significant problems before finding effective treatment. The problems range from the common aerophagia, to sinus congestion, mouth breathing, leaks, hyperventilation, panic attacks, bad titration studies, and many, many other problems. These problems are not comfort issues. They are either debilitating or can render treatment ineffective. For the medical community to turn a deaf ear to all this is simply appalling, IMHO. It not only reflects badly on sleep medicine practitioners, but on the whole of medical practice. Medical professionals simply have not placed priorities where needed to ensure effective treatment. [/soapbox OFF]

Arthuranxious, I wish you well with your treatment. Hopefully, you will meet with initial success, but if not, please ask the good folks here for additional help.

Regards,
Bill

[NightHawkeye]

Spam has resurrected another thread. This one's over a year old.

Yes, but arthuranxious is new, and his post deserved a response.

Regards,
Bill

[neversleeps]

Yes, but arthuranxious is new, and his post deserved a response.

Regards,
Bill

Right you are, Bill. When I was emailed another spam-resurrected thread and saw that someone had actually posted to it after the spam was deleted, I instantly threw in the alert in an attempt to stop further posting on the thread. I should have taken the time to explain it to arthur. Well done.

[Bookbear]

Nighthawkeye makes some good points, but I would guess that 'patient comfort' plays a bigger role than he's willing to give it. Machines that don't have a ramp feature, or some sort of exhalation relief, treatment without a heated humidifier--these are not just hardware issues, they ARE comfort issues that directly affect compliance. Of course, mask fit/comfort springs to mind as a central compliance issue, too.

It would be interesting to do a study of the 50% non-compliant patients and get a good reading on why they went off cpap therapy. My guess is that a good number of them will cite comfort issues as the main reason.

I certainly don't mean to let the medical community off the hook for not paying attention to patients' complaints about ineffective treatment, or hurried or faulty titration studies, prescribed equipment not in line with their specific needs, lack of explanations about diagnoses or treatment options, etc. These things are vital for the patients' well-being.

But even the most effective therapy is useless if the patient cannot tolerate discomfort caused by the treatment. Imagine a pill that cured (let's say) the common cold in 24 hours...but caused such severe nausea in 50% of patients using it that they threw up the medication and therefore got no benefit from it.......why did half those people stop taking the pills? Discomfort. Did they get any benefit from the treatment? No. Comfort may not always precisely equal compliance, but its certainly a big part of it.

Arthuranxious, good luck with your treatment. I hope your questions get answered by your doc; but if not, you can always post here and get good solid advice from people who have been there and done that. Don't hesitate to prod your doc, dme, and insurance company into giving you the information (and equipment!) you need!