Your doctor is correct and I have walked your path. It can, indeed, take 12 to 18 months for people to be able to fall asleep with the machine. People's individual responses do vary considerably. I encourage you to continue to try to work with it and try to increase your time a bit each week. This can be very challenging for some of us but it is worth the journey to improve your health. Also, try to have it on right before you go to sleep to acclimate yourself to the way that it feels. Good luck to you.
Do you put the mask on right before going to bed? I spent time using mine long before bedtime to get used to wearing it. I'd put it on and watch an hour or more of tv or read a book. I feel like it helped me get used to it and I've not had trouble falling asleep with it almost from the start.
Yes I put it go way before bedtime to get the 4 hours that is required every day. I try to push myself to sleep with it. When I have the mask on I don’t feel tired as I would with it off and after I take it off it is difficult for me to fall a sleep without a sleeping aid. It feels like the Machine gives me more Energy but it prevents me from sleeping.
I empathize with you! I am about 8 months in and had trouble with 2 things for about 4 months: getting the right mask that was comfortable, and the right CPAP settings. And then, just getting used to the routine of it all. It is annoying sometimes, especially at first, but I've gotten to the point where I'm comfortable, and sorta not thinking about the routine much anymore. I am actually getting a good 6-7 hours of sound sleep. A few times 8! I really hope you can give it a little longer. Good luck!
Does your machine allow you to slowly ramp up to a moderate pressure? It took me a while to get past feeling that I could not exhale properly once the machine was on. Your machine may have an autoset feature or a an extended ramp up time, either of which reduces the feeling of being "invaded" by the gust of air when you turn the machine on. I do agree that it is not easy to get used to feeling like Darth Vader, and I sometimes take my mask off after 7 hours and grab a more comfortable hour without it. However, there is a big difference between some discomfort and feeling that you are struggling. Does your DME provider have anyone who can work with you?
I suspect that your mask or your pressure is wrong. If your mask is too large, you will need to set the straps too tight and it's really uncomfortable. Each face is different and a different shape will probably work better for your face, too. So keep going to the fitting clinic until they get you right. The other thing I found was that once the pressure had come up, it was blowing the mask off my face - it turns out that if there is something about your body that does not allow it to respond easily to the pressure, more pressure won't help - they assume more pressure will. I have thyroid nodules, and these decrease the available openness in my throat - so we had to work out a slightly lower pressure range where I could sleep with it on for long enough for it to do it's job. It takes some time, because the folks who make the adjustments for the doctor are apparently idiots, but it did get me results when I persisted in having them back it down until I could sleep. So both mask, and sometimes pressure, are personal adjustments where the initial settings by your care provider might not work initially until adjustments are made.
And I agree - the improvement in sleep when it IS working reduces the amount of sleep I need, but that's OK as long as you are getting good sleep and are not groggy during the day. I'm awake after 6 hours now, which hadn't been the case for years. All that extra air charges you up, too. I have found that some nights I have trouble with it because I already have some stomach gas and the extra air pressure ads to my discomfort, so you could try a gas-relief product earlier in the evening and that may help with any "over-inflated" feeling from using the unit. It does take time, but mostly getting the fit right and the pressure tolerable. In some cases they will lower the pressure range, then start to put it back up again once you're sleeping better with it - so if your sleep declines after, check to see if they raised the pressure - they may have to drop it back down again.
As one of the idiots who makes the adjustments for the doctor, I feel that I should point out that CPAP pressure is prescribed by that doctor. We have to set the CPAP/BiPAP exactly according to what the prescription says. If the pressure is to be changed for any reason, this requires a new prescription, in writing, from the doctor. It is illegal for us to change the pressure without a prescription, no matter how much a patient may want us to and no matter how much we may agree with them. This is of course in Australia, but I would think the same is true of the US.
That was great response sleeptech .... I mean, for an idiot. Nah, just kidding ... : )
Hey Wired, there are too many really serious things going wrong in our world to find offensive. The truly silly and absurdly unproductive "idiot" labeling of all the good folks that work in Sleeptech's world and maybe yours, was so ridiculous that it was comical, as was Sleeptech's first few words in his astute response. Your commentary on the subject matter was wise also, but finding a laugh or smile wherever and whenever you can, is as useful as a great night sleep ...
I have nothing to do with being a medical professional. I worked for the Fed for 27 years and then in private industry for about 5 years and now own my own business rebuilding and selling vintage motorcycle carburetors. I steer clear of giving medical or any type of professional advice but note that most folks who come here with their first questions need support and can learn from things I fumbled with. I think the saddest thing is that many folks can't find this support elsewhere. sleeptech is a breath of fresh air and I wish more medical professionals took the time to provide generalized help such as he does. We have a few dental type docs who stick their necks out to provide advice and support and I very much appreciate hearing from them as well.
I am a dentist working in dental sleep medicine. The question that I would ask is whether or not you and your doctor have explored the possibility of substituting an oral sleep apnea appliance for the CPAP machine. I have placed hundreds of them and many people are comfortable the first night out. Most people can make the adjustment and be comfortable within ONE week. Really. When I read about these titanic and protracted struggles with the machines, I really am at a loss as to what to think. Now oral sleep apnea appliances are not for everyone, but I have to think that they would be a much easier way out for many people who are struggling with their treatment. Arthur B. Luisi, Jr., D.M.D.
It has been said quite a few times that oral sleep apnea appliances are the answer for some people. Can it be explained in general terms which type apnea patient is a good candidate? What range of apnea events does the appliance seem most suitable? If a person requires a very high positive pressure with a PAP machine, is that a consideration? Generally, who is most suitable for mitigating apnea events with an appliance? Some education might be in order so that folks could broach therapy alternatives more intelligently as an oral appliance never seemed to be an option for me as I went to a sleep study place that always prescribed PAP therapy.
Do you know what type of apneas your sleep study showed? I had a mix of central and obstructive apneas. I did use an oral appliance for some time. It was a relatively easy process and I had no problem using it. However I didn't notice any measurable improvement, and finally took a follow up sleep study that showed no change in my results. My understanding was that oral appliances were effective for some people with primarily obstructive sleep apnea.
Personally, I would consider using different equipment . Although I have little experience with some of newer types of cpap machines, I am using a bipap now. I would make an appointment with my equipment provider to explorer some ideas. Of course, your doctor, or a different doctor if you decide to get another opinion, will make the decision. You could also try meditation/relaxation. Meditation can have a significant physical and mental benefit which could be all you need. Relax, breathe and clear your mind to reduce the apprehension that must be considerable by now.
By the way, I did actually have two cpap opportunities, but did not comply either time. For me, different equipment and a new doctor has resulted in a better opportunity to get better.
I would urge you to stay the course. With motivation and perseverance, you will prevail!
I think that I can give you some general sense of who might be a good candidate for oral sleep apnea appliances. Oral appliances have a much higher success rate for mild to moderate OSA than for severe OSA. Remember, though, that about 80% of the patients are in the mild to moderate category. You need to have fairly good teeth: 1. no less than eight good teeth in both the upper and lower arch. I find that there are some circumstances where you can get by with a few less than that. 2. The teeth must have good bone support and no or very little mobility(movement under pressure). The patient must have good gum(periodontal) health or periodontal disease that has been successfully treated. 3. Good quality dental implants are acceptable. 4. Patient can not have a severe intraoral gag reflex. 5. The patient can not have major levels of sinusitis with post nasal drip. 6. The patient should have fair to good levels of nasal patency(openness to air flow). 7. The patient can not have claustrophobia with respect to intraoral appliances. 8. The patient should not have active TMJ dysfunction. Condition of TMJs needs to be fairly good, but not perfect. As to success rate, if you took a general average of what happens to any patient in the USA who walks into a dentist's office, it has been quoted at 50%. I think that is probably pretty accurate. Please keep in mind, however, that the success rate could potentially be significantly better, IF the dentists in this country were not so poorly trained in dental sleep medicine on average, IF the very best quality and designs of oral appliances were always used, and IF the dentists used the very best protocols currently available for fitting, adjusting, and testing the appliances. A very skilled dental sleep medicine dentist using top appliances can also have significant levels of success with severe sleep apnea and I would not automatically write severe patients off as untreatable. Arthur B. Luisi, Jr., D.M.D.
Thanks Dr. Luisi, that was an invaluable answer for folks searching for answers as they consider the best path of therapy.
It is safe to say that, regardless of your style of treatment, the best approach is always to work as a team. The patient should educate themselves in order to play an active and constructive part in their therapy, most particularly so that they can provide useful and meaningful feedback on their situation. The doctors and technicians involved should be attentive, cooperative and provide the benefit of their specialised knowledge and experience. Your various medical professionals (should) have a wealth of knowledge, which has taken years to acquire, that they can place at your disposal. On the other hand, only you know what is happening for you as you use your treatment. Only by working together can the best outcome be achieved. Unfortunately, in our neo-conservative western world, money is the primary determining factor in almost everything. For medical professionals to invest more time in their patients may yield better outcomes but also costs more money (in the short term at least) and the health care industry is no different to any other in that money will win out 9 times out of 10. This leads to a set-and-forget approach being all too common in all areas of health care. Work with your doctors, techs, whoever and encourage them to work with you. When you find medical professionals who actually care about you, or at least helping you to get the best outcome, value them.
Unfortunately, you are so very right about the actual situation in the real world. I will use my own situation as an example. There are sleep physicians in my own area whom I have conferred with, have briefed extensively on the pros and cons of oral appliance therapy, and who have seen the oral appliances succeed on their patients verified by objective testing, who STILL act willfully ignorant about oral appliance therapy because it does not benefit them directly financially and disrupts the smooth patient flow that they have with CPAP. This is very wrong, but there is nothing I can do about, except to go on these forums to educate people. People need to go on these forums and use other resources on the internet to become knowledgeable enough to make sure that their treatment is being done in their best interest. Arthur B. Luisi, Jr. D.M.D.
Speaking of money Sleeptech, I am brand new to this world and when I was going through the evaluation process I was first sent to a sleep clinic and later I was sent to a separate sleep center for my study which yielded I had pretty mild Sleep Apnea. Mild, but they were still recommended Cpac therapy. Dental devices were offhandedly mentioned but I had the distinct impression I was being steered toward the Cpac machine. They told me a medical supply store they had in mind would be contacting me to be fitted. I was not sure what to think about the whole Sleep Apnea thing but mild diagnosis or not, I have pretty severe symptoms like falling asleep in dentist chairs and even traffic lights for example, so I am just going along for the Cpac ride for now. Anyway to make a short story long, because I had this nagging feeling I was being steered away from the dental solution a question popped in my mind that maybe you can answer; At the risk of sounding like a conspiracy theorist, do sleep clinics and/or sleep centers get a cut from Cpac devices that are sold to their patients? If so, it wouldn't stop me from trying to alleviate the mentioned symptoms before I drift out into a intersection in a state of slumber. (Actually, if I know its a long light I will put my car in park just in case). So for fun, I am interested in what your answer to this question might be ... Thx
I am not as well versed as Sleeptech but I am an American and in our system of insurance, you generally need a referral from a primary care physician; some insurance plans make sure your PCP is in your network. They refer to a sleep clinic or sleep doc and at least in my case, the PCP knows little to nothing about obstructive sleep apnea or its treatment. The sleep specialist has to be in network so this part is generally left to chance and not because the PCP knows the clinic/sleep doc. They do a study and you get a prescription. The prescription is almost always for CPAP and it is generally up to you to find an in-network DME and I doubt there is any financial relationship. The whole process is done by disjointed parties. Before you get farther along in the process it might be wise to explore dental appliance as the means to mitigate your apnea. CPAP is the general prescription because it requires no further action by the clinic/sleep doc for determining how to best treat you. Next patient.
All I can say is that is SOME cases the people who do do the test do also make money from selling the treatment, both in Australia and the US. That is not the case where I work as we don't charge for anything, which is nice because my only interest is in helping people not making money. However it is a BIG problem in the industry that a number of service providers that perform sleep studies have a vested financial interest in the outcome. I see the effects of money-centred healthcare all the time and it bothers me a lot. People who need CPAP therapy should be able to trust that the advice they get from doctors and techs is given in the best interest of the patient, rather than a desire to make more money. This is why it is important to educate yourself and be involved in your therapy, because YOU need to be the judge of whether you are being given the right advice or not.
While everyone's experience is different and I would be one of the first to say this is not a perfect system out there, I do like to look at evidence for what is being recommended and done in medicine. Cpap is still considered in the medical literature as the gold standard for treatment and you can read about that here as well as other articles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4549693/
Not everyone is a candidate for a dental device, its as simple as that. I think it is always great to ask questions about the what and the why but for now this is considered in science to be the gold standard in care.
I think that this is becoming increasingly debatable. See my post on this forum: CPAP vs, Oral Appliances-- Is CPAP Still The Gold Standard. I think that CPAP has been considered the Gold Standard because the air pressure can be set at a point that will adequately control OSA in almost every patient. In that sense it is almost infallible. Oral appliances can not adequately control OSA in every patient and the treatment AHIs tend to be a bit higher than CPAP. However, as one of my earliest patients said to me, it doesn't matter how good a treatment is if you can't stand it enough to use it. In the real world compliance issues with CPAP make it suboptimal or useless for a large percentage of patients regardless of potential effectiveness. In that sense it is NOT a Gold Standard and other treatments, such as oral appliances, must be found. Arthur B. Luisi, Jr., D.M.D.
I believe that any effective treatment has a role to play. I also know, from perusing scientific data, going to conferences etc., that the reason CPAP is considered the "gold standard" is that the success rate is way higher than other available options. It certainly is not for everybody, but it is by far and away the best bet for most people, based upon the available research as a whole. I would expect that many of your patients, Dr Luisi, have tried CPAP and dislike it, which is the very reason they are seeing you. I have had many patients who tried oral appliances and were unable to tolerate them or found them ineffective. I also have had many patients who tried CPAP and disliked it, swapped to an oral appliance and then wound up back on CPAP because they found the oral appliance even worse. You say that "In the real world compliance issues with CPAP make it suboptimal or useless for a large percentage of patients" but I suspect that is an anecdotal perspective because the objective research clearly bears out the effectiveness of CPAP in terms of both effectiveness AND compliance. It is certainly "suboptimal or useless" for some patients but the proportion is small rather than large. I would hate for people reading this forum to start casting their CPAP machines aside based upon your comments, thus endangering their health, just as I would not suggest that they throw away their oral appliances which have been demonstrated effective.
The bottom line is that the best treatment is the one which achieves the best outcome for the patient, whatever that may be. There is no one-size-fits-all approach. Every person is an individual and must be treated as such. Only by everyone involved investing the time required to meet the needs of each individual patient will the best results be achieved.
I would agree that each of our perspectives is necessarily affected by our own personal experiences and we need to be aware of that. One thing that I have seen is that the compliance rates for both CPAP and oral appliances appear to be somewhat dependent on the quality and quantity of the support provided by the organization that provided the service. I agree that I am aware of practices and organizations that do have very high rates of compliance for the CPAPs they place. I am also aware of organizations with dismal records and the same for oral appliances. Patients are best served when all their options are presented to them in a candid, complete, and honest way. Each option should be presented with equal enthusiasm and the presenter should try very hard to be knowledgeable about all the options and to not let his individual preferences influence his presentation. Arthur B. Luisi, Jr., D.M.D.
Let me clarify my previous statement. The vast majority of people on CPAP have been able to adjust to it and are benefiting from it. However, a significant minority are struggling with it or have abandoned treatment. For practices that focus on CPAP alone the danger is that, if patients don't make it on CPAP, they will be forever lost to treatment and will end up sick or dead. If all modalities are not discussed and considered on day one and tried in an orderly sequence, the patient can end up dispirited and untreated. It was never my intention to suggest that anyone abandon any treatment that is working for them. And, yes, I do recommend to some of my patients that they would be better off with CPAP than oral appliances. Arthur B. Luisi, Jr., D.M.D.
I very much agree with you. As I keep saying, every patient is an individual and will have their needs best meet by different treatments applied in different ways. It very much behoves doctors to be familiar with all options and to present them all objectively so that the patient can make an informed decision. I think that oral devices have an important place in treating OSA and are not given sufficient attention from doctors.
To throw my 2 cents into this, I suggest that a majority of folks visiting this or any apnea related site are at the onset of diagnosis/therapy or are having issues and are looking for answers. I suggest that many folks undergoing therapy and who are having no issues and success in that therapy is mitigating symptoms don't often seek out help forums such as this one. Another reason folks come to this forum is poor communication with the medical professionals who are paid to communicate options, information and advice regarding sleep related issues. How many issues posed on this forum by newer folks would be more appropriate posed to their medical professional?
Hence my opening: "While everyone is different." Everybody's got to do what works for their own individual condition in partnership with their physician and the data findings from a sleep study.
Hmm. That sounds familiar... ;-)
Yes, we are saying the same thing; "while everyone is different." I am uncomfortable with anyone blasting one particular treatment out of the water calling it a financial scam when in fact this is not true and not implicated in the medical literature. Anyone working in medicine would know this I would hope?
I am only been participating in Sleep Apnea therapy via a Cpac machine for a couple of weeks so admittedly, I don't know didly at this point. I was steered toward the Cpac by the sleep professionals I first encountered. The dental option was not given much credence in my interview process. I had to ask a few questions about it to have it addressed with any earnestness. My medicare and supplemental insurance would cover only one chosen option at 100% so I just went for the Cpac. Too bad that previous to seeking medical advise I didn't realize that forums like this was out there. Silly of me, it only stands to reason there is. I say that because thanks to Dr. Luisi who specializes in the field of Dental Sleep Medicine there is information worth careful consideration in regards to the dental device. Had I read his and other posts I might have very well have opted for the dental option especially since I meet at least 75% of the criteria ... Back on the Cpac path however, I was lead to a medical supply business. Taking my first glance at the Cpac I was highly skeptical I would be able deal with this ordeal. Besides air being forced down my wind pipes the Cpac masks resemble something you might see in a "B" movie. A person would have to see the humor in that visual, but I was definitely feeling uncertainty with my willingness to stay with the program. Despite being diagnosed with mild S. Apnea my symptoms really are severe in the fatigue department so I made a pact with myself to stick it out for at least 30 days before issuing judgement and have been living up to that. I am guessing 6 months to a year would be a better evaluation period as I attempt to dial it in. I should note that I have noticed nothing life changing ... yet, but some subtle benefits. Therefore, "so far - so good" ... My point in my very short experience and for the uninitiated in the realm of therapy options, I wish I would have given the dental option a much more thorough once over. And not just with my neighborhood dentist. My dental office seemed very uninformed on this subject and my dentist is otherwise excellent. I really think I may very well have payed out cash for the dental device first and if it was not effective, then gone the route of insurance and the Cpac. And of course, it does seem the "Gold Standard" is Cpac for severe cases of Sleep Apnea. To those that fit that category I feel for you, and hope the Cpac is everything it is meant to be ....
I am not really sure what "gold standard" means but suggest it is most widely accepted form of therapy. PAP therapy works with almost every degree of OSI, not just severe and is called the gold standard for that reason (I think). I believe it has a much higher potential for success as compared to other means of therapy perhaps because of the degree of expertise in fitting and adjusting dental appliances? Problem with PAP therapy is the equipment; masks, machines, hoses, headgear, etc. are not things some can tolerate easily plus some folks seem to react to the material in the masks and have issues with sores and such. The point of any therapy is to reduce or eliminate medical issues so if the equipment used in PAP makes this impossible for an individual, then alternate (less invasive) means of therapy is certainly a welcome option. Should these alternate means of therapy be looked at and available to patients who seem to be good candidates and should these folks be given this option?
From what I have read here the dental option is probably not a solution to severe cases. It appears that would leave Cpac alone for that category of unfortunate suffering apnea victims. Semantically speaking, that makes it what many in this forum refers to as the "gold standard". So for those severe category of folks the definition really means only option. It's fantastic that Cpac has been effective for them. It appears though that if the dental opportunity actually works well, and it looks like there is evidence that it might, that folks new to this process be availed as much information regarding this choice as the Cpac. I definitely was not, but I am just one guy. How great would it be for what appears to be the majority that have do deal with the totally messed up effects of chronic interrupted sleep that the dental device could circumvent the intrusiveness of the masks? How many more people would actually do something about this issue if that was a reality? I mean, come on, that would be outstanding .... right? I am not a money hater, I love what it can bring, but I am smelling the influence of big money here being one of the reasons it may be de-emphasized by the Cpac industry. If it is in fact .. is. I could certainly be wrong. I am just saying to new people like me, be cognizant of the dental and any other side of this when checking out your options ...
Actually, it is incorrect to state that oral appliances can never be used for severe obstructive sleep apnea. A smaller percentage of people with severe sleep apnea will get very good results, but that doesn't mean none. If you use a DreamTap, which is probably the most effective appliance for severe OSA and use excellent technique, you can probably get an excellent result in about 30% of the cases, a fairly good result in about 55% of the cases, and a minimally effective result in close to 70%. The AASM recommends that CPAP be the first treatment tried for severe OSA, but then says OAs may be tried if the patient is CPAP intolerant. Arthur B. Luisi, Jr.,D.M.D.
I also have trouble falling asleep with my mask on. I am not used to it. It feels like it is going to smother me in my sleep. I found that if I hold it out a tiny bit with my hand while I am trying to fall asleep, so I can feel the air blowing, I can fall asleep and then my hand lets go and it seals into place. When I do this, I usually sleep all night with good numbers. I have the triangular shaped mask that fits over my entire nose.