CPAP Side effects

[evangelos]

CPAP Side effects
I used CPAP over one year now and I am very pleased with the results.
However I wondered the long term use what side effects may cause.
Anyone that has some experience please provide with as much as information you can.
Thanks
Angelos

[So Well]

Clear mind.
Strong heart.
Reduced chance of stroke, diabetes, depression, anxiety.

[gasp]

I think you may be asking about negative side effects versus complaints (see below) but I know of none. In case you're asking about complaint type side effects then this is a good article:


Side Effects and Getting Used to the Device

CPAP works well for both adults and children, but many patients have problems getting used to the device. Unfortunately, CPAP devices are often cumbersome, which can lead to patients becoming discouraged and stopping treatment. All patients should be warned that the first few nights of CPAP therapy are unnerving. The mask may cause some patients to feel anxious. Starting out with low pressure to get used to the mask may help. Patients may actually sleep less, or have different sleep quality, at the start of treatment.

Nearly all patients complain of at least one side effect. Nearly half of complaints are related to the mask. Many of these problems can be minimized with a well-chosen mask that is comfortable and reduces leakage as much as possible. Thorough education and ongoing support are essential for successful treatment with CPAP.

Common complaints include:

* Irritation in the nose and throat. The most common complaints are nasal congestion and sore or dry mouth, which are caused by leakage that dries the airway. (This may be severe in elderly people or patients who have had uvulopalatopharyngoplasty, a surgical treatment for sleep apnea. Such patients are more likely to stop using CPAP.) Chin straps, nasal salt water sprays, or humidifiers may prevent these side effects. Heated humidification devices are also available for CPAP users.
* Excessive application of pressure making exhalation difficult.
* A feeling of claustrophobia is a major factor in noncompliance. This can be improved by a lightweight and transparent mask or with masks known as nasal pillows, which are used only around the nostrils.
* Up to 30% of patients have irritation and sores over the bridge of the nose. Getting a properly fitted and cushioned mask can help reduce this problem.
* Eye irritation or conjunctivitis.
* Upper respiratory infections. It is very important to keep the unit clean.
* Patients may also feel temporary chest muscle discomfort, which is caused by an increase in lung volume.
* Severe side effects are very rare but may include heart rhythm disorders (arrhythmias), severe nose bleeding, and air pockets in the skull.
* In addition to initial difficulties with its use, the fixed CPAP needs to be periodically readjusted. Patients can be trained to adjust the CPAP at home, thereby avoiding trips to the sleep professional for machine adjustments and making the process more convenient.

Studies have reported that long-term compliance with CPAP systems is low, with about one-third of patients giving up the treatment. Compliance may be improving, however, due to better technologies and better education. Factors that may help include:

* Patient education and support groups
* A dedicated nurse to ensure close follow-up of patients (particularly in the first 2 weeks of therapy)
* Access to doctors to make adjustments as needed

Not surprisingly, patients whose symptoms are noticeably relieved by the procedure early on are more likely to continue the therapy.

Because many patients find CPAP uncomfortable and difficult, they tend not to use it for the duration of the entire night. However, while some patients� ' daytime sleepiness may improve after 4 - 6 hours of CPAP use each night, maximum benefits in quality of life require at least 7.5 hours of nightly CPAP use. It appears that longer nightly duration of CPAP use is best for achieving normal daytime functioning.

Source: http://www.umm.edu/patiented/articles/c ... 0065_8.htm

[Janknitz]

When I see a question like yours "However I wondered the long term use what side effects may cause." it makes me wonder if you are looking for an excuse to quit CPAP????

The overall side effects are rare, minimal and significantly outweighed by the health benefits. So why worry about them?

[robysue]

gasp,

A very good list of "complaints" as well as a good justification for additional patient education and help---particularly in the early going. But alas, think how many of these things are often ignored or overlooked by those whose job it is to help us make this work:

Nearly all patients complain of at least one side effect. Nearly half of complaints are related to the mask. Many of these problems can be minimized with a well-chosen mask that is comfortable and reduces leakage as much as possible. Thorough education and ongoing support are essential for successful treatment with CPAP.

How much education and ongoing support is there in reality for most of us?

Common complaints include:
<lots deleted>
* Patients may also feel temporary chest muscle discomfort, which is caused by an increase in lung volume.

Sure wish my sleep doc or the PA had mentioned that I might have some temporary chest pain (I did and it wasn't pleasant) and what it was caused by. I hate being told something is "a common complaint and don't worry" if there is an easy to understand and plausible reason WHY the problem occurs.

* Severe side effects are very rare but may include heart rhythm disorders (arrhythmias), severe nose bleeding, and air pockets in the skull.

All prescription drugs are required to have written warnings about rare, but potentially serious side effects and both doctors and pharmacists will usually remember to mention the most important of them. You know---the long list of things that in the drug ads are read really, really fast in the monotone voiceover while the visual pictures remain pleasant showing the patients doing oh so wonderfully now that they are on drug X. But pieces of durable medical equipment that provides daily therapy apparently do not need any such warnings. *sigh*

Absolutely NOBODY connected with my care ever shared with me a statement of the sort: Severe side effects (of CPAP) are very rare but may include heart rhythm disorders (arrhythmias), severe nose bleeding, and air pockets in the skull. And other than a few contraindicators listed in the users manual for my masks and machine, there is no list of potentially serious side effects that should/must be reported immediately anywhere I can find in the written documentation that came with my equipment.

Now, I'm sure NONE of my problems have involved any of these serious side effects. But I'd sure hate to be a CPAP newbie who has not been told this info who suddenly starts finding that they're waking up with a pounding heart and they decide to not report it because they've been told several times "You're just anxious about the mask. It takes time. Work on desensitizing yourself to the mask" Likewise, how the heck would anybody know they've got air pockets in the skull? Anybody know the symptoms of air pockets in your skull??

It's easy to trivialize the need for communicating information about rare, but real and serious side effects to all patients using a particular drug or therapy, but the warnings are there for a reason. For example, the migraine meds I've been put on and taken off this spring all have scaring sounding side effects. I started taking them both hoping and expecting to be like the vast majority of people taking these drugs---that I'd have no serious side effects and that the minor ones would merely be irritating. The doctor's instructions about the topamax contained specific information about common side effects to watch for and a couple of very serious side effects that warranted immediate medical attention. And the drug's information package contained additional warnings about side effects---some serious, but not quite as serious as the ones the doctor told me about. And so I knew I was already having some problems with the topamax when I became excessively thirsty in spite of increasing my water consumption as per the doctor's instructions. But one morning, when I peed, I noticed my urine had turned dark and since "dark urine" was listed as a potential side effect that needed to be reported immediately, I did so. The dark urine indicated something or other was going on that needed to be reported immediately to the prescribing physician because "dark urine" indicated that the topamax was doing something negative to something or other. I've obviously forgotten all the particulars since this happened back in Feb. (Pre-CPAP I'd have remembered all the gory details.)

* In addition to initial difficulties with its use, the fixed CPAP needs to be periodically readjusted. Patients can be trained to adjust the CPAP at home, thereby avoiding trips to the sleep professional for machine adjustments and making the process more convenient. (Emphasis added)

An article written by or aimed at the professionals treating us that dares to suggest training patients to (shudder) adjust their own CPAP at home instead of forcing them to take the machine to the professionals? Are the CPAP police looking?

More seriously---it's something you think OUGHT to be part of that "patient education and support" that's continually talked about in the professional literature, but at the same time, how many of us have docs and DMEs who continue to scold us of all the potential risks we take if we set the machine up to their instructions instead of driving a half hour somewhere to have it done for us?

[robysue]

The overall side effects are rare, minimal and significantly outweighed by the health benefits. So why worry about them?

Jan, I agree that overall side effects (as opposed to discomforts of use) of CPAP are rare, usually minimal, and (vastly) outweighed by the health benefits for almost everybody with OSA---in spite of my ongoing problems with no seeming health benefit in site.

But look at the article that gasp cites: According to the University of Maryland Medical Center, there are a few, very rare, but potentially serious side effects (as opposed to complaints/discomforts) of PAP therapy including heart rhythm disorders (arrhythmias), severe nose bleeding, and air pockets in the skull. And the University of Maryland Medical Center is not some shady, irresponsible, anti-PAP web site. And their OSA web pages provide a competent explanation of what OSA is and why it is important to genuinely help patients adjust to CPAP therapy in the long run. The focus of the page in question indeed is on how patient education (including patient education about the common problems they are likely to face) should help people become compliant and stay compliant. So it's reasonable to assume that those stated very rare, but potentially serious side effects of CPAP are indeed REAL side effects that cause serious problems for some very small number of CPAPers.

So why worry about these very rare, but potentially serious side effects of CPAP? Well first of all, why worry about the very rare but potentially serious side effects of any drug or medical device or therapy? Because some very small number of people are going to experience a serious problem. And the people using the drug, medical device, or therapy need to know what to worry about on very tiny chance that they happen to be one of the unlucky ones.

And some of us are natural worriers. But a better explanation about why so many newbies (and some oldies) worry about side effects of CPAP is that if you've got some kind of bizarre thing going on that seemed to start with or shortly after beginning xPAP that no-one has bothered to explain to you or keeps telling you sounds ridiculous, it is not at all unreasonable to wonder if the CPAP somehow caused or contributed to the issue.

And some standard complaints border on side effects as well and can seriously affect quality of life issues. Take severe aerophagia: If a person never had a problem with GERD before he/she started CPAP and had never needed to take a proton-pump inhibitor at all, let alone on a daily basis long term, but now the person is told to take a PPI on a daily basis by the PCP or sleep doc because the aerophagia is causing stomach pain---is the aerophagia really just a "minimal" side effect to that person? What if the person finds he/she can't tolerate being on the PPI on a daily basis because of serious side effects of PPIs, which include allergic reactions (rash, hives, itching, swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs); difficulty breathing or swallowing and hoarseness; as well as an increased risk of fracturing the wrists, hips, or spine---something that could well be a concern to a person suffering from both OSA and osteoporosis? Remember: The person would NOT have to deal with the PPI (and its side effects) had he/she NOT been started on xPAP in my scenario.

[gasp]

I would assume that abnormal air pockets in the brain caused by XPAP are so rare that it isn't commonly discussed either here on the forum or in most articles on the web regarding apnea.

Sinuses are air pockets in the skull so I'm not too curious about the article's mention of them - however I am curious if they are referring to newly formed in response to XPAP. I am unable to find any reliable information. Hmmmm, anyone else?

[archangle]

We're ignoring the elephant in the room.

Insomnia is the most common side effect. Probably the most severe side effect and the one that makes the most people quit CPAP.

Having something like the larva from alien attached to your face makes some people have a hard time sleeping. And the pressure, noise, dry throat, leaks, pressure in the ears, gas in the stomach, difficulty inhaling, etc.

It's something you need to be prepared for. You can usually work through the problems, get used to some things, etc. If you need CPAP, the improvement in your health will probably be worth it. Without CPAP, you're being partially strangled several times a night, and that has a bad effect on the quality of your sleep and has a number of bad direct side effects on your health.

[gasp]

. . . Having something like the larva from alien attached to your face makes some people have a hard time sleeping. And the pressure, noise, dry throat, leaks, pressure in the ears, gas in the stomach, difficulty inhaling, etc. . . .

True for many and hopefully overcome by most.

I am so happy to say that I overcame these side effects. I made friends with my mask and stopped feeling resentful that I had to wear it. I made a Darth Vader picture for my husband to put next to the bed (it has my head on Darth Vader's body) as a joke to make light of my snoring being replaced by the regular in/out breathing with APAP. Now I barely notice it's there.

I use the highest setting for exhalation relief (number 3 on my APAP) so the pressure isn't a concern (and I became adept in the early days of hitting the ramp button to reduce pressure when waking in the middle of the night).

And so on. I hope those experiencing the side effects mentioned are also able to overcome them. The forum members here were the reason I was so successful. Thanks again to all those who helped me.

[So Well]

You guys that are replying need to do more thinking about the patient and more thinking about the question the patient is asking. All you are thinking about is yourself and the answer you are going to post.

Look at what the patient said:

I used CPAP over one year now and I am very pleased with the results.

Why load him up with a list of worries about "potential" problems???

Tell him there are no harmful side effects, pat him on the back, and send him on his merry way.

I have CPAPer friends who tell me CPAP worked well for them from the first night on. I will never send them here.

[BlackSpinner]

I have CPAPer friends who tell me CPAP worked well for them from the first night on. I will never send them here.

Same here. The only side effect was some skin irritation. CPAP solved GERD, dry throat, insomnia, asthma and a host of other problems FROM DAY ONE.

[Janknitz]

You guys that are replying need to do more thinking about the patient and more thinking about the question the patient is asking. All you are thinking about is yourself and the answer you are going to post.

Look at what the patient said:

I used CPAP over one year now and I am very pleased with the results.

Why load him up with a list of worries about "potential" problems???

Tell him there are no harmful side effects, pat him on the back, and send him on his merry way.

I have CPAPer friends who tell me CPAP worked well for them from the first night on. I will never send them here.

Ditto!

Remember, the OP has successfully used the CPAP for one year already. But worrying about these side effects that are totally unlikely to happen may cause more insomnia than the machine itself.

[newhosehead]

[quote="robysue"]How much education and ongoing support is there in reality for most of us?
quote]

Excellent post, robysue. My answer to the question above? In my case, absolutely NONE. My doctor thinks I should come in every six months (at first it was 3) to be asked if I am being compliant. I said "yes." He said "Great." I decided there really are better ways to spend my copay.
Every few months, my DME calls and informs me that my doctor wants an overnight pulse ox. I thought there was merit in that and I have done it a few times. Funny thing is, I got to thinking about that and called the doctor's office. They have never ordered one.
I can get really, really angry lately.

Jeanette

[Mr Bill]

Clear mind.
Strong heart.
Reduced chance of stroke, diabetes, depression, anxiety.

So true, and I would add, less arthritis or gout pain, energetic, bright outlook, hopefull.

I have my good days and my bad days. Many nights I strap on, no anxiety, fall asleep, and wake refreshed. Other nights, my throat gets scratchy (humidity makes it worse), my breathing slightly labored, my anxiety goes through the roof, and I contemplate my mortality. Those are my AHI over 3 nights.

[Sireneh]

I'm assuming the OP is an adult, in which case he has every right to have his question answered appropriately by other adults who may have researched or otherwise gleaned greater knowledge than he on the subject of CPAP use. While I agree that offering the information unsolicited would have been a poor decision, the idea of patting him on the back and sending him on his way just because the risks of said use are very low, is condescending and insulting.