CPAPtalk.com

I've been reading these exchanges and wondering about some points.

Truth behind talking points wrote:Rooter……Thank you, thank you, thank you!!!! This is what I meant by truth behind talking points. I have read all the talking points about either CPAP or lack of oxygen, but the information that you just share is what I have been looking for.

Q: You have apparently undergone a diagnostic PSG. What about a titration study?
A: No, I have not. All that the Dr did was a sleep study follow for a ‘Congratulations, it was barely but you qualify for a CPAP. You can start using it today.” Then proceded to share talking points about the benefits of the machine. After my research it looks like she was reading from the web site of one of the manufacturers.

From what you have said, it appears you haven't had even an at home sleep study, much less a PSG. If your quote from the Doctor is correct it sounds as if you had some kind of insurance determination that they will pay for a CPAP. You don't even seem to have a diagnosis! Are you going to allow an insurance company to determine what you have and how to treat it? Are we confused?

In my opinion you don't have enough data to make a decision. At the very least, get a diagnosis. You don't know if your apneas are obstructive, central, mixed. You don't know if you have periodic breathing. You don't know if you etc., etc., etc.,

How can you assess any treatment option if you don't know what you have?

You might reread BlackSpinner's reply. She answered your questions using common sense. Her answers are well worth a second look.

If your quality of life is improved through any therapy you take, should you reject it if it is habit forming? Have you ever heard of good habits?

I used to do what you do - with small companies. Years of doing bad things to your body will eventually result in your body doing bad things to you. We may be remarkably resilient, but we eventually break, wear out or down, and show the result of all the abuses. If you can catch a problem in time and prevent further damage, you have a wonderful opportunity. But first, find out what you've got. That starts with a diagnosis. Only then can a treatment be selected.

Mr Capers

Beyond talking points wrote:Good morning all,

Let me clear things up a little bit. Off the over 15 forums that I found with related topics, I chose to post on this one because it is the most honest one. It is clear that you have been honest in your personal opinions. It was a good decision to ignore the others and focus here.

Our personal and educated opinions come from our own experiences of what works and from consulting with only the best sleep specialists and discarding the others. And lots of guidance from the best and brightest veterans on this forum. We have become medical consumers and not just patients. My husband was unfortunately already a "senior" with a long history of SA symptoms when he was finally diagnosed with moderate OSA(23 apneas/hr) only after 2 Triple Bypasses, Aortic Valve Replacement, napping all day with snoring, breath stopping, gasping,leg movements and mini arousals all night long with frequent urination and much loss of memory and other medical problems. He has been compliant with cpap since 9/08 and his vital signs are perfect, discontinued most meds, he sleeps peacefully 8-9hrs nightly with no potty breaks, one small nap in mid-morning,(with and without mask), then awake and alert until 11PM bedtime. I have my loving partner back from the brink. And after just undergoing a 4th surgery for chronic bone infection due to shrapnel that can't be removed, this time his surgeon believes the wound is healing faster and with no complications as before due to increase in his nightly oxygen levels and general good health. I thank God there is therapy for this condition.

Beyond talking points wrote: My disappointment is that it should be fairly simple to study 50 persons that were diagnose and use the machine and asked to stop for a short time and compare them to 50 persons that were diagnose refused to use the machine.

After almost 5 weeks on cpap there is no way I would agree to sleep without cpap just for a study and my RDI was pretty mild on my diagnostic sleep study (8 if I remember correctly).

All,

Let me summarize what we have up to now:

Talking points easy to find in any web site:
1) CPAP is the gold standard for Apnea
2) CPAP also helps snoring and will save your marriage life
3) Life changes when Apnea is controlled
4) There is significant improvement with compliance
5) Even with slight apnea persons benefit from the machine
6) Apnea deprive the body of oxygen
7) In patients with moderate-to-severe obstructive sleep apnea, compliant CPAP usage may improve insulin secretion capacity, reduce leptin, total cholesterol, low-density lipoprotein levels and blood pressure
8) The mask is uncomfortable, but it is better than the alternative (slow painful death)
9) It is a lifelong commitment, who would like to sleep with Apnea again.



Beyond talking points (Knowledge shared by you):

• CPAP users are a very informative group. There is more common sense knowledge here than in Google scholar. Just don’t underestimate how much CPAP users love their machines.

• Never take the word of the doctor, always analyze the sleep study yourself

• Do not let a generalist start you on a lifelong treatment, only use the best specialist

• CPAP machine has only been used for 30 to treat sleep disorders; there is not much data on long term studies.

• There are different levels of sleep apnea. It is a progressive condition.

• Early diagnostic is a blessing, but there is no much guidance of what to do with it.

• The Machine treat the symptom, does not cure it:
o The body gets used to apnea, and adapts. The CPAP treatment return the body to the normal state and it may be harder to nap without the machine as the body is no longer adapted to low levels of oxygen.
o One theory is that by using the CPAP I will prevent secondary damage and if I stop after # of years I will be better off than if I did not use them.
o Apnea symptoms return immediately after CPAP treatment stop
o There is research that Sleep Apnea May Extend Lives of Elderly. (Notice the word may). See additional research.
o Dental appliances could be an alternative (emotional subject for some)

• Simple sleep study is not comprehensive enough. For persons with time to make a decision we also need to know before making commitment:
o titration study
o evaluation for Positional Sleep Apnea
o Type of Apnea obstructive, central or complex
o What was your AHI and what is the nature of any oxygen desaturations
o What is your BMI
o comorbidities (I had to open a dictionary here!)
o Physical and emotional health
o Result of the study without allergies
o Oxygen levels when sleeping on back, sides, and front.

• Obstructed sleep apnea is due to the tongue not nasal blockage.

• There is a direct correlation between sleep deprivation and overweight. Lack of sleep cause weight gain, weight gain causes apnea. (Avoid the topic unless you are willing to go into a chicken egg type of debate)

Next steps:

• It is worth it to buy a good oxygen meter and use it over several nights before committing on a path. It will give me a comprehensive picture of relationship to sleep position, stress level, and congestion and others.

• Skip primary care and set up appointment with sleep specialist. (recommendations for Portland, OR accepted)

• Ask for a comprehensive home sleep study

• Contact researchers and encourage individually (demand as a group) long term studies.


Additional research:
See links in previous posts. I was not able to cut and past them without loosin the link.



This has been a very rewarding activity. Thank you all very much. Do keep adding information as you find it as I am sure that I am not the only one with these types of questions out there. Do not ever underestimate your knowledge, as you were significantly more helpful than my primary care physician.

CPAP may save marriages but it can also destroy them along with relationships if one is freaked out seeing their significant other sleep with a mask. Being single and using CPAP can be a nightmare. I know many who won't use CPAP for this reason. Watch all the different responses to this one....................

Mac33 wrote:CPAP may save marriages but it can also destroy them along with relationships if one is freaked out seeing their significant other sleep with a mask. Being single and using CPAP can be a nightmare. I know many who won't use CPAP for this reason. Watch all the different responses to this one....................

Yep lots of buttons on this one. If your "loved one" can't tolerate your life giving cpap then it is time to trade them in for someone who gives a damn about your health and life.

BlackSpinner wrote:

Mac33 wrote:CPAP may save marriages but it can also destroy them along with relationships if one is freaked out seeing their significant other sleep with a mask. Being single and using CPAP can be a nightmare. I know many who won't use CPAP for this reason. Watch all the different responses to this one....................

Yep lots of buttons on this one. If your "loved one" can't tolerate your life giving cpap then it is time to trade them in for someone who gives a damn about your health and life.

If only it were so easy...............I guess it's as easy as trading in a car?

Beyond Talking Points wrote: 2) CPAP also helps snoring and will save your marriage life

No, I think you need to go to marital therapy for that!

6) Apnea deprive the body of oxygen

Not necessarily if you include Upper Airway Resistance Syndrome in your definition of "apnea".

The mask is uncomfortable, but it is better than the alternative (slow painful death)

Not all types of masks are uncomfortable, and not for all people.

Never take the word of the doctor, always analyze the sleep study yourself

I would generalize this to: Never put your fate exclusively in the hands of those who care less about it than you do.

There are different levels of sleep apnea. It is a progressive condition.

It varies from night to night, so you might fall in the "mild" category one night, have "no apnea" another night, and be in a different category another night. In short, it is an artificially categorized continuous variable, which has marked variability on a night-to-night basis.

Early diagnostic is a blessing, but there is no much guidance of what to do with it.

Sure there is: Do what you're doing by learning as much as possible about your condition and investigate all your options for treatment, including each treatment's costs and benefits.

o The body gets used to apnea, and adapts. The CPAP treatment return the body to the normal state and it may be harder to nap without the machine as the body is no longer adapted to low levels of oxygen.

Well... I've seen people with severe apnea nap (even inadvertently). I don't think most people would say that you would be unable to nap without CPAP if you so chose.

o One theory is that by using the CPAP I will prevent secondary damage and if I stop after # of years I will be better off than if I did not use them.

OK, this is not a "theory" - it's what I inferred from the contents of that MP3 interview -- it may be possible.

o There is research that Sleep Apnea May Extend Lives of Elderly. (Notice the word may). See additional research.

File under "That which doesn't kill me makes me stronger".

o Dental appliances could be an alternative (emotional subject for some)

Surgery may be an option.

• Simple sleep study is not comprehensive enough. For persons with time to make a decision we also need to know before making commitment:
o titration study
o evaluation for Positional Sleep Apnea

I'm not sure that this is a separate evaluation. On a diagnostic PSG, it should break your AHI into an overall average per hour, AHI on your back, and AHI in REM.

o Type of Apnea obstructive, central or complex

Don't forget RERAs!

What is your BMI

I'm not sure of what relevance this is, unless you intend to compute your ideal pressure on CPAP (which you are not, you'd use an APAP before you'd do that, I hope). But if you're going to include this, add "neck circumference" to this.

Obstructed sleep apnea is due to the tongue not nasal blockage.

This is incorrect. There are many possible sites of obstruction, the tongue being one possible contributing factor. Nasal blockage could be a contributing factor as well. I've seen at least one article by Dr. Guilleminault in which he says that nasal surgery can be a cure for UARS, but he cautions that all the sites of obstruction must be identified.

• Skip primary care and set up appointment with sleep specialist. (recommendations for Portland, OR accepted)

I thought you already had a sleep study, no? Then the first step is get a copy of your report. BTW, while you're doing that, you might as well ask for your study on CD (the graphs), in case you ever need it in the future.

Ask for a comprehensive home sleep study

I have not read much to convince me that in home sleep studies are the way to go. In the lab is best unless you have some very specific reasons why you need to be at home like agoraphobia or something (you're never at home anyway, so you don't!).

Contact researchers and encourage individually (demand as a group) long term studies.

Given the high rate of noncompliance with CPAP, there would be so much attrition of the subjects that after 5 years, or 10 years, no one would be left in the study. If the researchers were smart, they would sample from this forum!


Very impressive summary. You've assimilated a lot of information. I can see why you would be good at your job, Jason Bourne.

The following are probably dependent on the individual.

The mask is uncomfortable, but it is better than the alternative (slow painful death)

I hardly realize that I'm even wearing my mask. And, once I'm asleep, I REALLY don't.

• Obstructed sleep apnea is due to the tongue not nasal blockage.

I know that a lot of my problem (and I believe that of others whose posts I've read) is actually in my nasal passages. People with congestion or small nasal passages can't get enough air by nose-breathing, so they resort to mouth-breathing. Enlarged turbinates or deviated septums will restrict the airflow. When they resort to mouth-breathing, the tongue has a greater probability of being sucked (or falling) backward to close off the airway......thus causing apneas. By doing nightly nasal cleansing and using cold "passover" humidification, I've been able to breathe much better through my nose while I sleep. Since my methods have been working for me, I've opted not to investigate nasal surgery.


Den

Wulfman wrote:The following are probably dependent on the individual.

The mask is uncomfortable, but it is better than the alternative (slow painful death)

I hardly realize that I'm even wearing my mask. And, once I'm asleep, I REALLY don't.

• Obstructed sleep apnea is due to the tongue not nasal blockage.

I know that a lot of my problem (and I believe that of others whose posts I've read) is actually in my nasal passages. People with congestion or small nasal passages can't get enough air by nose-breathing, so they resort to mouth-breathing. Enlarged turbinates or deviated septums will restrict the airflow. When they resort to mouth-breathing, the tongue has a greater probability of being sucked (or falling) backward to close off the airway......thus causing apneas. By doing nightly nasal cleansing and using cold "passover" humidification, I've been able to breathe much better through my nose while I sleep. Since my methods have been working for me, I've opted not to investigate nasal surgery.


Den

Den,
Why not nasal surgery? I'm looking into it or enlarged turbinates and severe deviated septum which won't cure my apnea but may help especially if I sleep on stomach and keep my palate from collapsing.

Mac33 wrote: Den,
Why not nasal surgery? I'm looking into it or enlarged turbinates and severe deviated septum which won't cure my apnea but may help especially if I sleep on stomach and keep my palate from collapsing.

Like I said, what I'm doing is working for me, so I'll stick with it. I've been a mouth-breather all my life......my routine has improved my breathing a great deal. Most of the people who had turbinate reduction and septoplasty are still using CPAP therapy. From what I've read, the recovery isn't something I'd look forward to. And, the cost would be more than what I'd want to shell out anytime soon.


Den

Beyond Talking Points wrote:• Simple sleep study is not comprehensive enough. For persons with time to make a decision we also need to know before making commitment:
o titration study

If you aren't going to use cpap, don't waste your money and your insurance company's money on the titration sleep study. This is specifically to determine the correct cpap pressure.

o Oxygen levels when sleeping on back, sides, and front.

• It is worth it to buy a good oxygen meter and use it over several nights before committing on a path. It will give me a comprehensive picture of relationship to sleep position, stress level, and congestion and others.

Check your diagnostic study for RERAs (respiratory effort related arousals) before relying on oxygen levels. RERAs can disturb sleep as much as apneas but don't result in a reduction of oxygen levels. I have apneas when sleeping on my back and RERAs when sleeping on my side. I spent most of my diagnostic study on my side so I didn't get a OSA diagnosis but the cpap still keeps me from waking up multiple times per hour.

Since your primary care doc read the sleep study, don't expect him/her to understand what RERAs are, my primary care doc (who is a great primary care doc) hadn't heard of them when I thanked her for sending me to the sleep doc.

Just a few thoughts.

As others have pointed out, it appears you don't know what your diagnosis is and haven't seen the results of your sleep study. Researching the proper treatment based on your specific diagnosis and analyzing the sleep study with the help of knowledgeable people is a critical early step in this process. Finding out all the pluses and minuses of CPAP (and its long term effects) seems to me to be a bit premature since you don't know why the doctor is mentioning CPAP as a posssible treatment for you. If you have very mild sleep apnea, a dental appliance, surgery, and/or weight loss MAY be more suitable treatments for you at this time. In your shoes, my first priority would be understanding your diagnosis, the symptoms revealed during the sleep study, and what needs to be addressed by treatment. You have the right to a full copy of your sleep study report. It is the key to the next step in your treatment.

• CPAP users are a very informative group. There is more common sense knowledge here than in Google scholar. Just don’t underestimate how much CPAP users love their machines.

Just a comment here. People who love their CPAP machines have benefited from CPAP therapy and feel an increased quality of life due to CPAP. CPAP can be a lifesaver when the level of oxygen deprivation from sleep disturbances causes significant health problems and/or a significant reduction in the ability to function on a daily basis. I would not have believed I would say this prior to starting CPAP, but CPAP is a minor inconvenience compared to the health benefits I have experienced from using it.

However, not all who try CPAP stick with it or make the effort necessary to tweak their therapy to get maximum benefit. So, not all CPAP users love their machines. I would prefer not to have OSA and not need CPAP therapy, but I have severe OSA (based on my sleep study and my symptoms) and with CPAP, I am likely to get better quality sleep and feel better able to function when awake. When I fall asleep without CPAP, I usually wake up unrested, as I did before being diagnosed with OSA and starting CPAP therapy. So, I appreciate my CPAP machine and equipment for the improved quality of life I believe it is helping me to have. As others here have posted, they no longer are sleeping on the sand but are surfing the waves... or taking long bike trips and enjoying nature in ways they could not before CPAP therapy. That is what causes many people here to be so passionate in not wanting to sleep or travel without their CPAP machines. Having experienced the benefit of treatment, sleeping without it is not very appealing.

• Never take the word of the doctor, always analyze the sleep study yourself

It is important to understand your sleep study and diagnosis. No doctor can spend the time on one patient needed to help you fully understand your sleep study. There are many resources that can help interpret sleep study results, including but not limited to knowledgeable people on this forum. Presumably, you are motivated to learn and find the best treatment because you have the greatest interest in your health and well-being. A sleep specialist who recommends PAP treatment (which may be CPAP, APAP, BIPAP, and other variations on CPAP) uses the sleep study to recommend a machine type, mask type, and pressure (or pressure range). You should understand why the doctor made the recommendations based on your sleep study, and if treatment does not go well at the start, revisit the sleep study to see if changes need to be made.

In my case, I could not tolerate CPAP (a continuous positive airway pressure at one level set by the doctor). I flet like a vacuum cleaner blower was forcing air at too high a pressure and I could not breathe in sync with it. Based on evidence I found from reading my sleep study, I was able to get the doctor to change my treatment to APAP, which varies the pressure level within a range set by the doctor based on my needs at any given time. APAP therapy is delivered with a CPAP machine. Without understanding the sleep study and getting the doctor to pay attention to my concerns, which took a while, I would probably not be very happy with my current treatment because I was only able to sleep four hours or less with CPAP, which was not enough for me to function, but I usually get eight or more hours sleep using APAP. Each person is different and the doctor's initial prescription may or may not be exactly what you need. My sleep specialist, who I never saw, is supposedly the best in my state but his initial recommendations were totally unsupported by my sleep study.

I consider it a bit harsh to say to "never take the word of your doctor," but you definitely need to understand the reasoning behind the doctor's prescription (PAP type, pressure, machine, and mask) and be proactive in tweaking your treatment if the doctor's initial prescription doesn't make you feel the benefits of the therapy.

Good luck in understanding your diagnosis and treatment options. This forum is a great resource based on PAP users' actual experiences. Once you have your sleep study in hand, you should have answers to many of the questions that Rooster and others have asked. This information is key to helping you determine what treatment is right for you. So far, this has been an interesting theoretical discussion on CPAP, which you may or may not need, based on the vague information your doctor evidently has given you so far.

Mac33 wrote:

BlackSpinner wrote:

Mac33 wrote:CPAP may save marriages but it can also destroy them along with relationships if one is freaked out seeing their significant other sleep with a mask. Being single and using CPAP can be a nightmare. I know many who won't use CPAP for this reason. Watch all the different responses to this one....................

Yep lots of buttons on this one. If your "loved one" can't tolerate your life giving cpap then it is time to trade them in for someone who gives a damn about your health and life.

If only it were so easy...............I guess it's as easy as trading in a car?

Most people spend more time, research and energy picking out a new car them who they go to bed with. They also spend more time, research and energy on car maintenance then their own health. Maybe if we spent the same quality of time choosing our bed partners as we do cars this wouldn't be an issue.

solecava wrote:a) if your CPAP machine breaks down, do you sleep worse than before you started using it?
b) what side-effects have you experienced? what do you have to put up with in order to enjoy the benefits of CPAP use?
c) do you use CPAP every night or can you sleep once in a while (like when travelling/camping) without it?

a)My ResMed CPAP has never failed to work and I now have an APAP, my CPAP is my backup. The better question might have been, without CPAP during power outages, do you sleep worse than before CPAP treatment?. During power outages, I do not sleep so far it's only been for a short period of time; I have severe OSA and a high respiratory disturbance index. I will get power backup when I can figure what works for what $ when I can afford. Now, if power were to be out for awhile, I think I might go to a hotel that has power.

b)Initial side effects disappeared as I acclimated to use, they included: 4 nights in hell trying to stay asleep at full pressure, runny nose in the morning & congestion until I found the sweet spot for humidification, strap marks that padding made acceptable, sore lower ribcage that migrated to my back with constant ache & almost-pain with deep breaths. The latter effect was less noticeable but by 30 months, I was intolerance of straight pressure and that necessitated a switch to an APAP with exhalation relief (my pressure was in the moderate range). My sleep improvements far outweighted the side effects. I did not experience many of the other more challenging side effects that often plague new users.

c)I have never intentionally gone to sleep without my equipment. I have dozed off sitting up, then awoken when my head tipped over. This is scary to me given the sequelae of apnea & the heart rhythm irregularites that are likely to follow events; as a result, I try to get sufficient sleep every night so I don't get that sleepy.

I agree that the question of benefits vs equipment etc when apnea is mild & desats remain in the 90s is a valid question. First, the existence of SDB must be verified and the degree of oxygen desaturation must also be verified. If my SDB were mild (apnea + RDI numbers) and my desats stayed in the 90s. I think I would get a very good recording oximeter and sleep with it and accept that I had to review those numbers regularly -- any increase in desaturations (or drop into the 80s) or increase in heart rhythm events would be the trigger to talk with a sleep doc or primary with knowledge of managing SDB. Of course, any appearnace of the ususal list of SDB symptoms would also send me in for a chat.

Just my peer-to-peer opinion