Frustrated after 5 years of use of CPAP

[jcsaxx]

I have been using my machine, ResMed SleepStyle 600, for around 5-6 years. My doctor told me that my insurance won't give me another machine unless my current machine breaks. I have not confirmed this through insurance, but hope that my doctor wouldn't lie to me. He has said that he isn't a fan of my current machine, since it doesn't record enough data. I use a ResMed Mirage Quattro mask. I have a lot of leaking problems. My main complaint is that I'm still pretty tired everyday and don't feel like I'm getting refreshing sleep. Fortunately, I'm not so bad that I'm falling asleep while driving or doing activities. Napping is hard for me, because my mind races, so at night I take Ambien (10mg). The cpap has helped me with some things, like no snoring, waking up less often for bathroom breaks, and no more heartburn at night. I thought I would feel better. My doctor did tell me early on that I probably have a "sleep debt". I'm pretty confident that I had sleep apnea years before I was diagnosed, because of symptoms that I remember.

I'm wondering if the machine is the problem, if the mask is the problem, if I should get a different doctor, or all of the previous? I wanted to be one of those people who have energy after using CPAP. I think 5 years is far too long to not feel better. I wouldn't be surprised if some of the responsibility is my fault from not trying other masks. Expense is an issue for me. The very first mask I tried only went in my nose, but then air came out my mouth. I was a mouth breather, but have come to learn to breath out of my nose. Don't know if it matters any, but I was born with a cleft palet (had no roof in my mouth). My doctor says its doesn't matter. As you can see, my thoughts are all over the place. I'm so tired.

[kteague]

I would be frustrated after 5 years too. The doctor is probably telling you the truth about insurance replacement - all of them have replacement guidelines. But maybe you should check with your insurance personally to get full details and any possible exceptions. Just be careful what you say because it may be documented for your insurance to use against you later. Might be best to just be matter-of-fact in asking them their policies and do not discuss your particulars at this point. I would think medical necessity as deemed by your doctor would justify a new machine if there was something different about its features. At the very least, the doc could order a two week trial on an auto titrating machine to get the data that would reveal if your treatment is therapeutic or not.

Oh, also know if your machine is owned outright by you. At this point I would think so, in which case I don't think they should be able to ask for it to be returned when you get another machine. When dealing with that once I was told I would have to turn my prior machine back in to get a replacement. That's fine if it is broken, but if the issue is an upgrade, they shouldn't be able to take a machine unless it's still under a rental contract. I know there's variables to that, just suggesting you be informed. It could still be a good backup machine. Has anybody else had experience on this point? Mine is limited (and biased).

[avi123]

The Sleepstyle 600 CPAP is made by Fisher& Paykel company and not by Resmed.



In my opinion you waisted 5 years of "treatment" by not taking it seriously.

That Cleft Palate issue may require the involvement of an ENT specialist.
A full face or a total face mask should have helped.
A CPAP treatment is based on a full control of air going thru nose and mouth.

[Todzo]

I have been using my machine, ResMed SleepStyle 600, for around 5-6 years. My doctor told me that my insurance won't give me another machine unless my current machine breaks. I have not confirmed this through insurance, but hope that my doctor wouldn't lie to me. He has said that he isn't a fan of my current machine, since it doesn't record enough data. I use a ResMed Mirage Quattro mask. I have a lot of leaking problems. My main complaint is that I'm still pretty tired everyday and don't feel like I'm getting refreshing sleep. Fortunately, I'm not so bad that I'm falling asleep while driving or doing activities. Napping is hard for me, because my mind races, so at night I take Ambien (10mg). The cpap has helped me with some things, like no snoring, waking up less often for bathroom breaks, and no more heartburn at night. I thought I would feel better. My doctor did tell me early on that I probably have a "sleep debt". I'm pretty confident that I had sleep apnea years before I was diagnosed, because of symptoms that I remember.

I'm wondering if the machine is the problem, if the mask is the problem, if I should get a different doctor, or all of the previous? I wanted to be one of those people who have energy after using CPAP. I think 5 years is far too long to not feel better. I wouldn't be surprised if some of the responsibility is my fault from not trying other masks. Expense is an issue for me. The very first mask I tried only went in my nose, but then air came out my mouth. I was a mouth breather, but have come to learn to breath out of my nose. Don't know if it matters any, but I was born with a cleft palet (had no roof in my mouth). My doctor says its doesn't matter. As you can see, my thoughts are all over the place. I'm so tired.

My CPAP worked for me about as well as yours has for you at the five year mark - pressure bumped up by doctor - better for a time - pressure bumped at about the 8.5 year mark - better for a time - then I learned to monitor my data and things got much better - then I learned to take care of carbon dioxide maintenance issues and - within a year my need for CPAP pressure went down to about half (15 to but needed a bump to 9 about a month ago - and had to reestablish EERS[1] to handle seasonal post traumatic stress issues. I feel a lot better and am getting more done, my weight is consistently going down, I am better.

Simply you cannot set pressure and be there forever. Your need will change. That need must be responded to for CPAP to work for you.

Today I guess monitoring ones own data and learning to adjust lifestyle and your own pressure is the only option to keep getting better on CPAP as things are today.

I think we need to push for constant monitoring and response to problems by the medical community. This is the only way the masses will be helped by CPAP long term.

[1] :
Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[billbolton]

I have been using my machine, ResMed SleepStyle 600, for around 5-6 years.

If your machine is from Resmed, it's not a SleepStyle 600

Alternatively, if it is a SleepStyle 600, it's from Fisher & Paykel

I'm wondering if the machine is the problem, if the mask is the problem, if I should get a different doctor, or all of the previous?

You should get your doctor to take a serious look for other sleep disorder conditions, probably not essentially respiratory in nature, that you may be experiencing.

I wanted to be one of those people who have energy after using CPAP.

xPAP can only remediate straight forward Sleep Disordered Breathing (SDB) issues, its not a silver bullet for all sleep issues/disorders by any means!

It sounds like your xPAP treatment is addressing a number of previous SDB related symptoms, so it seem likely there are other sleep issues to resolve... perhaps Ambien related etc.

Cheers,

Bill

[qmx]

Have you replaced your mask periodically? You mentioned "leak problems". Leaks will pretty much nullify the effects of the cpap if they are bad or frequent enough. Have you meticulously stepped through the fitting/adjustment process for the mask? I also use the Mirage Quattro and have had great success with it. The adjustable feature is great if used properly. Is your mask old or worn out? Just some thoughts. Best of luck to you. DEAN

[DoriC]

My husband uses the same Quattro mask and we need to replace it every 3-4 months when it starts leaking. A data capable machine with software is really essential for successful therapy. Treatment needs change for many reasons, weight loss/gain, allergies, life's stresses,etc. Definitely check with your insurance in a casual manner as kteague suggests. Hopefully your Dr will work with you. Keep us posted.

[ChrisD]

I know you mentioned expense as an issue but have you tried looking at Craig's List for a used data capable machine? They are not that expensive.

Once you have a data capable machine as a "back up" you will not be too terribly upset when your 5 year old brick dies unexpectedly in a freak power surge.

Would your insurance cover another sleep study? Maybe the sleep doc will say your needs have "significantly" changed since you were given the other machine 5 years ago and the insurance would pick up the cost of a new machine?

Chris

[Suddenly Worn Out]

I dont know anything about the cleft palate. I know it is something you are born with. I dont know how that would factor into OSA and wearing different kinds of masks. I will say this though. 1) I would never rely on my sleep doctor's opinion as "the law" regarding what my insurance would or would not pay for and how frequently. I learned a long time ago most doctors do a poor job of advocating for their patients. And that most of them do not keep up with nitty gritty specifics of each patient's health insurance plan.

I would contact your health insurance company on your own and find out what they will pay for and how frequently. I have been lied to, bullshitted too many times pre-2007 and even some afterwards to rely on medical people 100%.

As far as cost being an issue, a five or six year old machine is getting pretty old. There are some darn fine machines out there that are really not that expensive, particularly if you just use straight CPAP. There are even used machines on that "Second Wind" website that are even cheaper. I would encourage you to explore the possibility of bypassing your insurance entirely and buying a new CPAP machine with humidifier, out of pocket. If you can afford it, straight CPAPs are not that expensive. Its not like buying an APAP or a BIPAP. Much cheaper. Im actually amazed at the low price of many straight CPAPs, even makes me jealous sometimes. I think straight CPAP actually works better than APAP or BIPAP, so long as your pressure is titrated correctly. For example, I should really be on a set pressure of around 14 to 16 for maximum anti-sleep apnea effect. But there is no way I can tolerate the side effects of that high a pressure on straight CPAP. So I use an APAP with a minimum of 10. Its the highest Ive been able to tolerate, unfortunately.

The Quattro is a great mask, but a lot of leaks is bad. Leaks means waking up frequently and waking up frequently means sleep defragmentation and poor general quality sleep. I have to wear the Quattro tight to not get bad leaks. Im repreatedly told here and offline that the Quattro is designed to be worn loose. I just have not found that to work in the REAL WORLD. Wearing my Resmed Activa nasal mask loose does work, though, so there must be something to Resmed's claims of their masks are designed to worn loose.

I suppose all in all, I have this to say to you. If I had only to rely on my health insurance, I'd probably be dead. I routinely bypass my health insurance entirely. And I like it that way. Health insurance for me, it just gets in the way a lot of the time. Its restrictive, its a ripoff, I really dont like insurance. I prefer to bypass them and pay for certain stuff directly out of pocket. Its more expensive but it removes a lot of stress off of me and less stress for me at least, is preferable than more expensive.

I would consider a new machine, frequent quattro mask changes (at least change the cushions every three months), possibly a new sleep doctor if you are not satisfied with yours. Although it is not always the doctor's fault, as I said many times they just plain do not do their job of advocating well for the patient. Many of them are overworked bad. Some are just in it for the money and could care less about you. Others are OK and others are somewhere in between. But just about all of them are worn out and overworked.

If you still have residual fatigue, consider 1) getting a new sleep study you might need a higher pressure or you might be cracking centrals in addition to obstructive apnea, 2) if you dont need a higher pressure and dont have centrals (mixed apnea), consider one of the FDA approved stimulants for residual OSA fatigue. There is nothing wrong with Provigil or that newer one that is similar to Provigil.

I try to stick to the basics, while at the same time I think outside the box a lot. Weird as that sounds. I operate on my own a lot regarding this sleep apnea stuff and like I said, I bypass my insurance a lot and if I did not do that, I'd not be a happy camper.

Good luck,

Eric

I have been using my machine, ResMed SleepStyle 600, for around 5-6 years. My doctor told me that my insurance won't give me another machine unless my current machine breaks. I have not confirmed this through insurance, but hope that my doctor wouldn't lie to me. He has said that he isn't a fan of my current machine, since it doesn't record enough data. I use a ResMed Mirage Quattro mask. I have a lot of leaking problems. My main complaint is that I'm still pretty tired everyday and don't feel like I'm getting refreshing sleep. Fortunately, I'm not so bad that I'm falling asleep while driving or doing activities. Napping is hard for me, because my mind races, so at night I take Ambien (10mg). The cpap has helped me with some things, like no snoring, waking up less often for bathroom breaks, and no more heartburn at night. I thought I would feel better. My doctor did tell me early on that I probably have a "sleep debt". I'm pretty confident that I had sleep apnea years before I was diagnosed, because of symptoms that I remember.

I'm wondering if the machine is the problem, if the mask is the problem, if I should get a different doctor, or all of the previous? I wanted to be one of those people who have energy after using CPAP. I think 5 years is far too long to not feel better. I wouldn't be surprised if some of the responsibility is my fault from not trying other masks. Expense is an issue for me. The very first mask I tried only went in my nose, but then air came out my mouth. I was a mouth breather, but have come to learn to breath out of my nose. Don't know if it matters any, but I was born with a cleft palet (had no roof in my mouth). My doctor says its doesn't matter. As you can see, my thoughts are all over the place. I'm so tired.