CPAP does not appear to be helping you - ANOTHER PROBLEM?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Tassie Devil
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CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Tassie Devil » Sat Apr 18, 2015 1:40 am

Hi fellow snorers. It has been awhile since lurking here but there is a good reason for returning.

All set to receive anesthetic for the first stage of dental implants last week and the anesthetist aborted it and shot me off for an emergency admission to the nearby general hospital. Why? Well he observed an irregular heart beat, something (later confirmed by the heart specialist), which could have caused a possibly fatal heart attack!!

Overnight hospital observation confirmed the problem which in the following days was closely investigated by the heart specialist with a doppler machine and a 24 hour monitor harness. Result is a pace maker is to be installed in the next 2 or 3 weeks.

So that is the reason the CPAP gear did not produce the miracle awakening anticipated - it was my dicky heart causing the lethargy etc. And that is the reason I'm posting this as others might be in the same frustrating situation, incorrectly feeling the CPAP treatment was a waste of time and money.

Yes, it did take some perseverance to get used to it and after a month I changed to a ResMed nasal mask. And yes I did need the CPAP gear, an overnight hospital visit eight months ago confirmed that. The net result IS better sleep.

BUT I've changed my GP as she did not detect the heart problem, despite me complaining to her late last year the CPAP gear was not offsetting feelings of lethargy and being generally unwell. She muttered something about "old age"!! Yes I am old, 80 in a few months, but that is all the more reason to be wary. However the heart specialist said that my experience is not uncommon and that he admired the training given to Australian anesthetists because they often pick up problems like this that GPs miss.

So folks, if you feel CPAP is not working for you do not abandon it, specially if sleep apnoa has been medically confirmed. You might not be suffering the heart problems I have but there might be another undetected reason so be persistent about getting to the root cause. Unless you believe in re-incarnation you only have one shot at a few decades of life here so you owe it to yourself to ensure they receive the best possible medical attention -> good health and well being.

So good luck and best wishes to you all,

John

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Julie
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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Julie » Sat Apr 18, 2015 2:05 am

Has it not occurred to your doctors that sleep apnea was the cause of your heart problems, and that Cpap probably kept it at bay for years? We are all getting older and while so many live much longer now, so far no one seems to be immortal - something's going to eventually get all of us.

"Irregularities' is a well known consequence of not using Cpap, often being seen as atrial fibrillation, and who's to say when you might otherwise have run into it if you hadn't been on Cpap yet?

I'm happy for you that you're being treated and have good people on your side, and that they were smart enough to catch things before you ended up with worse trouble. Hope all goes well for you in the future.

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Tassie Devil
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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Tassie Devil » Sat Apr 18, 2015 3:31 am

Thanks for the response Julie, it is sometimes difficult to work out that chicken and egg situation. I do have annual check ups and they did give me an electrocardiogram test last year but it could well be an example of what the heart specialist said - they did not look at it carefully enough and missed clues that were there. And you could well be right that the sleep problems did not help and had exacerbated the present condition.

However, when I first attempted CPAP 7 years ago and abandoned it because I could not cope (maybe a big mistake) the lung specialist at the time sent me to the cardiologist for a very extensive series of tests and nothing did show up then.

Interestingly the Doctor I've now left rang me last week after receiving a report from the cardiologist and happily proclaimed my condition was not too bad, adding nothing showed up at my last test with her. The "not too bad" is ironic when a pacemaker is needed. She was obviously trying to downplay her incompetence. It was tempting to challenge her competence but that would achieve little so I desisted.

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Julie
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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Julie » Sat Apr 18, 2015 4:15 am

Hmm.. is it not possible that very little/nothing showed up on your tests in the past, but only recently was strong enough for the machines and doctors to pick up? Conditions develop over time, and while you may have had minor (to-be-expected-for-age) abnormalities then, they weren't 'loud' enough to be of concern. I say this only because while you may be right that your doctor should have seen problems back then, it is possible that no one could have done so at the time, and that things only recently became obvious. It's quite surprising how quickly some things show up that weren't seen at all even a relatively short time ago... another consequence of getting older!

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Tassie Devil
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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Tassie Devil » Sat Apr 18, 2015 6:49 am

Maybe a possibility, but when I told the doctor 6 months ago that after several months of use the CPAP was not helping she should have looked further, particularly because at that time I was being given a medical examination. My lack of energy etc had been evident for quite some time and she had been told of that but was seemingly dismissive of it being part of aging so I had to live with it.

So again, I urge those who feel CPAP is not helping to persist and be prepared to find further reasons for problems. It now seems established that sleep apnea can lead to heart problems due to insufficient oxygen being supplied so if it has been diagnosed for you, please persist, even if it takes 3 months or more to get used to it.

In my defense of my earlier abandonment the CPAP machines, 5 years ago they were noisy and crude compared to what is around now. Even now it requires persistence to find the best mask and more persistence to experiment with the straps so they are not too tight but tight enough to seal. Some are most uncomfortable and can bruise the nose. It has taken three for me to get one that suits. FYI it is: Mirage Activa™ Nasal CPAP Mask with Headgear - large. I should note that on my profile.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by ChicagoGranny » Sat Apr 18, 2015 7:06 am

Tassie Devil wrote:you only have one shot at a few decades of life here so you owe it to yourself to ensure they receive the best possible medical attention -> good health and well being.
I like your attitude. May you have two or three more good decades here!

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Julie
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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Julie » Sat Apr 18, 2015 7:12 am

Oh that is bad! Doctors today are supposed to have let go the notion that old age is inevitable and therefore nothing should be tried to make it better! So glad you're ok now.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Hosehead4ever » Sat Apr 18, 2015 7:22 am

I did not know sleep apnea could cause heart problems, Julia. I'm only 36 but underwent extensive cardiac testing last year because of racing heartbeat and passing out randomly (and sometimes feeling like a balloon is inflating in my chest). Was finally told my blood pressure was too low (as low as 55/40 at times) and to increase my sodium intake in hopes of increasing my BP. Do you think this is something I should continue to pursue additional treatment for or insist they look further into it given my years of sleep apnea?

Tassie Devil, I'm glad you are getting treatment and will be doing better soon. My grandmother just turned 95 last month and is still going strong. So 80 is nothing. Keep on trucking!

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Sonnyboy » Sat Apr 18, 2015 8:10 am

I am 66.

I have complained of weight gain, fatigue, difficulty concentrating, and memory loss since 2010.
My family doctor checked my blood work but nothing else and attributed my issues to age, poor diet, laziness, lack of exercise, depression, and stress.

This year I asked my gynecologist/oncologist to refer me to a doctor that could do a workup for fatigue and she told me that any doctor could do that and offered no referral. I went back to my family doctor, again with the specific complaint of fatigue and she again attributed my issues to age, diet, laziness, exercise, depression, and stress. I actually started yelling at her in the exam room -- saying my fatigue was not normal, something was the matter, and I wanted a specific fatigue workup, nothing else. It took my yelling to get her to refer me to a cardiologist and a sleep doctor.

After my sleep apnea and PLMD were diagnosed and I was still waiting for a Cpap machine, my family doctor again wanted to discuss diet and exercise and told me my problem was that I was not doing enough, that I was nonproductive and this was what was causing my problems. I know a lot about diet, exercise, etc. so I was frustrated and I yelled at her again -- You are not hearing me and how tired I really am. Why can't you understand my fatigue is interfering with my ability to get things done and do the things that I know I need to do.

There is something wrong with a doctor that puts their patient's down like that.

I'm feeling better with more energy now so I am concentrating on the things I know are important like diet and exercise and I am looking for a new family doctor too. I'm fortunate my cardiology workup only showed a right bundle branch block which is not a huge problem and now I have a cardiologist to follow this.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by BlackSpinner » Sat Apr 18, 2015 8:23 am

Heart conditions can be hard to diagnose. It took my sister over 5 years to get a proper diagnoses of her heart murmur - a double beat that happened once every few weeks (empties the heart, which then vibrates until it fills and starts with what feels like a slam). She was diagnosed when she was in the hospital having a work up for other reasons and it decided to do it.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by yaconsult » Sat Apr 18, 2015 9:58 am

I have a defib implant as well - they have to be replaced every 4 or 5 years when the battery runs down.

I believe that a very large number of heart and cognitive/brain problem are caused or aggravated by sleep apnea. And the problem is, it's not being detected until much later than it should be. My belief is that apnea screening needs to be worked into medical checkups - the annual physical visit might be a good place. Maybe start with a having patients fill out a short, simple questionnaire. Something like this: http://www.sleepapnea.org/assets/files/ ... nnaire.pdf

I also think that much more needs to be done for followup with new cpap users. From http://riversidemed.net/top-10-practice ... ompliance/:
CPAP compliance is often defined as using the therapy for an average of 4 hours a night for at least 70% of the nights. Studies show that somewhere between 29% and 83% of patients do not meet the criteria for compliance due to removing the CPAP early in the night and/or skipping use altogether. When patients first start using CPAP, they usually establish their pattern of compliance early on—within the first week of treatment. Clinicians are able to monitor use of CPAP via built-in smart cards, communication by modem, or a Web-based system to check both the hours the CPAP machine has been run and the amount of time the interface was actually in use. Often there is a discrepancy in run time versus applied time. This occurs when the patient removes the mask but leaves the CPAP unit running.

Researchers have looked at various factors in trying to predict compliance and have found a few and ruled out many. The patient's age, sex, and socioeconomic status have been ruled out as having some bearing on compliance. Also, the patient's feelings of stress, anger, anxiety, or depression did not affect CPAP compliance. However, the severity of their disease as reflected in their apnea-hypopnea index (AHI) showed a relationship with compliance. Those with a higher AHI tend to be more compliant, and if they have both OSAS and CHF and are treated with CPAP, they have less mortality. Those patients who have already demonstrated poor medical compliance carry this forward with CPAP therapy. Compliance tends to be less in those who do not understand the health-related problems of apnea, those who refuse CPAP during titration, and those who complain of claustrophobia. Finally, those patients who are self-conscious and reluctant to wear the CPAP interface in the presence of their sleeping partner will be less compliant.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by ChicagoGranny » Sat Apr 18, 2015 2:58 pm

yaconsult wrote:My belief is that apnea screening needs to be worked into medical checkups - the annual physical visit might be a good place. Maybe start with a having patients fill out a short, simple questionnaire. Something like this: http://www.sleepapnea.org/assets/files/ ... nnaire.pdf
First you better train the damn doctors, test them for sleep apnea and give them an incentive to screen patients for sleep apnea.

Otherwise, I have always agreed with what you said.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by archangle » Mon Apr 20, 2015 7:44 am

Whether all the finger pointing is right, there's a real problem here.

I call it apnea blindness.

Doctors and patients tend to blame everything on apnea. It the person has "apnea" on their medical chart, they tend to blame everything on the patient's apnea and not look for the real cause.

It's important to realize that apneacs have all the same medical problems that affect everyone else.

All of us apnea sufferers need to realize that we've got to ride herd on our doctors to look for the real cause, not just find a convenient excuse, ring the register, and move on to the next patient.

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by yaconsult » Mon Apr 20, 2015 8:53 am

ChicagoGranny wrote:
yaconsult wrote:My belief is that apnea screening needs to be worked into medical checkups - the annual physical visit might be a good place. Maybe start with a having patients fill out a short, simple questionnaire. Something like this: http://www.sleepapnea.org/assets/files/ ... nnaire.pdf
First you better train the damn doctors, test them for sleep apnea and give them an incentive to screen patients for sleep apnea.

Otherwise, I have always agreed with what you said.
While that would be wonderful, ChicagoGranny, I don't think we'll see it any time soon. I'm thinking of the kinds of newsletters and updates often sent out by insurance companies, medical organizations, etc. It could take very little room - just a couple/few sentences. "Tired all the time? Napping during the day? Waking up unrested? Take a FREE online sleep survey!" I have seen people take those tests and have a light bulb go on in their head. The first time you go to a new sleep doctor, you usually get the same kind of questionnaire to fill out.

But what organization could or would push for something like this? Various diseases and afflictions have organizations devoted to education and/or support. Why did so many of us have to find out the hard way?

We're preaching to the converted here. How does the word get out to all the people who need to hear it?

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Re: CPAP does not appear to be helping you - ANOTHER PROBLEM?

Post by Janknitz » Mon Apr 20, 2015 11:05 am

It's particularly frustrating that if you complain of fatigue once you are on CPAP you'll be told "just keep using your CPAP", as if nothing else might possibly be wrong (perhaps caused by decades of damage from untreated apnea).

And women have the additional problem that it's "just" menopause. At least men have a better chance of getting their concerns heard.
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