CPAP since age 48. What’s your experience?

[Markola]

I had an episode of cluster headaches in my late 40s, in which for over a week I woke up with the feeling of an ice pick in my temple. A neurologist gave me an MRI and discovered two suspicious looking places that “might be signs of stroke.” Yikes! I have stroke in my family. I got myself to the Mayo Clinic Sleep Lab.

Outwardly, I was a healthy and trim 40 something but there I was in the Mayo Clinic. One of the things they recommended was a sleep test, which I did that night. My scores were terrible! I assumed it was just a bad night or the machine was off and didn’t take further action. I couldn’t yet accept sleeping using a machine. Denial is a powerful thing when you haven’t had real health problems before.

A year later, my dentist had gotten into making sleep apnea mouth pieces. They required a sleep test with a local sleep clinic and, again, my scores were frightening. I’d been told by DW and others that I could REALLY snore. The doc at the sleep clinic said my case was too bad for a mouthpiece and recommended a CPAP, so I finally took it seriously. Since then, at 54 now, my CPAP has been traded for a much more comfortable BIPAP, which let’s me exhale comfortably. I haven’t had cluster headaches and I sleep so well that I find I need less sleep altogether and fewer naps. DW actually likes the white noise and I no longer snore. I am a lot better off and can see it in the data the machine provides.

Just curious what others’ experiences are? The whole sleep apnea industry has exploded, with supplies now featured at my CVS and implantable devices being introduced.

 

[JDARNELL]

I have a bipap also. I don’t leave home
Without it. It’s been 3 years for me and my events have been cut down to less than 1 an hr. Quality of life has gotten much better in this area.

 

[Winemaker]

I have had a CPAP for 12 years; I use it every day. We don't travel without it. My original face piece style was horrible, although I used it for 9 years. New masks needed broken in and they would always cause a wound on the bridge of my nose, I have a permanent divot now. My current device is very simple, a very soft tube that acts as a nasal cannula without the protrudes, it is excellent.

 

[Aerides]

DH has a cpap with a nose-only thing. Not even a mask, just covers the nostrils. It's a pretty small unit overall. Sounds like winemaker's.

He was a horrendous snorer forever before this, I needed earplugs most nights...or the guest room. He never noticed any other impacts (and slept like a baby through the snoring). But a new primary last year decided he needed to get tested. I never thought he had apnea because he never stopped breathing during sleep, but the tests said I was wrong.

 

[ER Eddie]

I had a CPAP for a few years, back when I was overweight. I had done a home-based sleep study, rather than go into a lab, but the scores were bad, so I got a CPAP. It made sense, because my wife and others told me I snored badly, I was about 40-50 pounds overweight, and I usually felt tired during the day. That was about 10 years ago.

At first, I felt a big improvement in sleep quality. Then I started to have problems with the mask, so I switched it for other models. That helped a little, but I'd still find that the mask caused me to wake up a lot. I stuck with it, but it was a hassle.

After a health crisis (caused by a surgery gone wrong, not my own condition), I finally clued into the dietary and health information I was missing. I lost the excess weight, and I haven't used a CPAP since. I generally wake feeling well-rested (though looking forward to my first cup of coffee, to which I'm addicted).

I haven't had an official retest yet, but I've done my own informal testing, using a portable voice recorder. I put it next to me and tape myself sleeping, then listen to it the next day. Exciting listening, let me tell you!

I average about 4 or 5 apnic episodes an hour, which is at the upper end of the normal range. They increase when I'm on my back, so I try to sleep on my sides. The episodes don't last as long as the ones I was having before, and the "snort" and gasp that follows them isn't as loud as it was before. It was kind of scary, to listen to them before.

Anyhow, that's where I am at the moment. I might get an official sleep study at some point, but for now the tape recorder results are okay.

 

[Lawrencewendall]

I've used a CPAP for 19 years. Started with the nose pillows but eventually went to this:
https://www.amazon.com/Resmed-62103-Mirage-FX-Complete/dp/B071GTZQZB

Very comfortable. Was issued a new machine and it's so quite, I miss the white noise. Sometimes I have to lift the mask to ensure it's even running. I dream like crazy now.

 

[Teacher Terry]

I have been using one since age 57. I used the old one for 8 years and my friends kept saying that the new ones were so much better. Got it 3 months ago and love it. I can wear it much longer than the old one.

 

[geeky_grrl]

I tried to use a CPAP after being diagnosed with apnea (and having snored basically my whole life) and could never adjust to it. I couldn't breath through my nose so I had the mouth and nostril mask which felt claustrophobic. My doctor had me try different masks, sedatives, and behavioral techniques to try to get me to adjust and nothing worked.

I eventually had surgery (removed my tonsils, adenoids, and a bunch of extra tissue in my sinuses) and that resolved my apnea. The CPAP would have been a lot cheaper and less painful, but at least I can sleep better and don't snore now.

 

[Sue J]

In 2007 (age52) I had my sleep test due to snoring and high blood pressure. I didn’t feel sleep deprived. I was stunned when I saw the results! It was a classic case of apneas and changes in heart rate.

So I got a crap machine and I chose the nasal pillows. I took to it right away and never had adjustment problems.

I brought home a brochure about sleep apnea and DH read it and realized he had more symptoms than I did. He had a sleep test and his results showed that he also needed a crap machine. He started with a mouth and nose mask and had adjustment problems for a while. Eventually he changed to nasal pillows like me.

We both have newer machines now that have a memory card that you can read. It gives your a record of your sleep. Very interesting.

Our machines include a unit for humidification. DH always uses his and I never do. He needs to always have a supply of distilled water in the house. Not a problem at home but something to think about when planning travel.

 

[pacergal]

DH has severe sleep apnea, even with CPAP, he still has episodes according to sleep doc.
He has tried full face masks, nasal mask and now has nasal pillow. That works the best for him, but he still has enough episodes that the machine gears up frequently, which wakes me up and I nudge him to take a deep breath. The sleep lab just notched the pressure up again, so we'll see.
He sleeps much better, I have a white noise machine and ear plugs if needed. Sometimes go to the other room.

 

[Sue J]

Too late to edit my earlier post, but I see that when I typed c p a p I got autocorrected to “crap! Please understand that we love our CPAP machines and would never refer to them as crap!

 

[Oilcan]

My wife and I have had cpap's for about ten years. Initially it took me about a year to get used to it. I would wear it for about four hours, then take it off and throw it on the floor. I hated it. At one point I didn't wear it for about four months. But I tried different masks and didn't give up. Now I have had one that has only the nose piece and i love it.

Also know two people that have died from apnea so that is a real motivator!

One other thing. For those that are cleaning the hoses by hand, I would recommend a SoClean machine. The are fairly expensive but save a lot of time.

 

[Markola]

My wife and I have had cpap's for about ten years. Initially it took me about a year to get used to it. I would wear it for about four hours, then take it off and throw it on the floor. I hated it. At one point I didn't wear it for about four months. But I tried different masks and didn't give up. Now I have had one that has only the nose piece and i love it.

Also know two people that have died from apnea so that is a real motivator!

One other thing. For those that are cleaning the hoses by hand, I would recommend a SoClean machine. The are fairly expensive but save a lot of time.

I couldn’t get used to the CPAP or the kind of masks that cover both mouth and nose. Fortunately, the sleep clinic let me a try a bilevel or BIPAP machine, which I bought immediately. Somehow, it’s smart enough to allow me to easily exhale entirely comfortably and naturally. That was revolutionary for me.

Second, I, too, went to a very soft and minimal nose-pillow only, minimal face mask. https://www.usa.philips.com/c-e/hs/sleep-apnea-therapy/dare-to-dream.html However, my mouth still falls open so I combine it with a jaw strap, kind of a soft sling that wraps under my jaw and over my scalp. Add some total blackout eye patches and I’m gone.

I also bought the SoClean, which was evolution #3. Couldn’t be easier.

At first I bought all my supplies from my clinic but the identical name brand stuff is on Amazon for about one third the cost. I just use the auto-reorder function and pay with my HSA for even bigger savings.

 

[MRG]

OP, your post hit me. I've never used a cpap but should have, I had terrible symptoms and it sucked. After I retired I dropped 70 pounds and all my symptoms went away.

Your comments about cluster headaches were interesting. I had clusters for many years when I worked. Oddly I haven't had one in the last 7+ years since I left the workplace. I attributed them to stress and never thought about sleep quality and my horrible snoring. Interesting too, the last treatment they tried was Oxygen.

 

[clobber]

Second, I, too, went to a very soft and minimal nose-pillow only, minimal face mask. https://www.usa.philips.com/c-e/hs/sleep-apnea-therapy/dare-to-dream.html

+1

This thing is amazing. Even better than the nasal pillows.

 

[SheitlQueen]

I've been using a bipap with s/t for almost a year. It has completely changed my life. I was having 89 episodes an hour and my O2 levels were dropping as low as 51%. I was exhausted all the time, to the point it wasn't safe to drive. Since using the bipap I'm back to my normal 6 hours of sleep a night, I am no longer exhausted, and I am preventing damage to my health. I don't like using it, but I'll never be without it. I have several styles of masks I alternate through. Can't stand the nasal pillows, my pressure is too high to tolerate them.

 

[SheitlQueen]

My wife and I have had cpap's for about ten years. Initially it took me about a year to get used to it. I would wear it for about four hours, then take it off and throw it on the floor. I hated it. At one point I didn't wear it for about four months. But I tried different masks and didn't give up. Now I have had one that has only the nose piece and i love it.

Also know two people that have died from apnea so that is a real motivator!

One other thing. For those that are cleaning the hoses by hand, I would recommend a SoClean machine. The are fairly expensive but save a lot of time.

SoClean doesn't clean, it only disinfects. ResMed will void your warrantee if you use it. I had an ozone cleaner but quit using it when I found they really didn't do any good and my DME (who sells SoClean) told me they were pretty much a gimmick. And I couldn't stand the residual ozone smell and decided I didn't want that stuff in m lungs.

 

[Mo Money]

I am slim (apparently like OP) but have moderate apnea. I have been using a Phillips bipap machine for five years. I us the nasal dreamwear mask discussed by several posters above. (I trained myself to keep my mouth closed by using a 1" square of medical adhesive tape over my mouth for a few weeks. Don't try this at home; if you do it's at your own risk. )

The bipap machine has generally made an improvement in my sleep. But alas, lately, I find that I just yank the nasal mask off in my sleep after 1 or 2 hours. I think part of the problem may be that I have a deviated septum and can't get enough oxygen through my nose. Whatever the reason, I am bumming that I am only getting a couple hours of bipap treatment, as opposed to 4-8 hours per night. I used to have no trouble getting 4-8, but now it's a rarity. And the nasal mask is so superior, that full nose/mouth masks and nasal pillows feel like a Darth Vader helmet, now that I've been using the nasal mask.

My sleep doctor has been of little help. Any suggestions?

Also, I have had only one overnight sleep lab stay in the 5 years I've been using a bipap machine. Does anyone else get prescribed sleep tests more often? I'm wondering if my sleep doctor is dropping the ball.

 

[Masquernom]

I've used a CPAP for a few years now. Originally, my problem was that the sinus on the lower side of my head would immediately plug at night. The higher side would then dry out and become sore and wake me up. As soon as I'd turn over, it would happen again. It was driving me crazy. I had surgery for a deviated septum, and had a procedure to reduce the size of my turbinates. Neither helped.

I finally had a sleep test, and just had enough episodes that insurance would let me get the CPAP. I have a fairly low setting, but I have the humidifier and heated hose. Now, although the lower sinus still plugs, it's warm humid air I'm breathing, and the higher sinus doesn't dry out and start hurting. I use my CPAP every night, all night. I haven't slept a night without it since I got it.

 

[Teacher Terry]

So clean degrades the hose and masks.

 

[Markola]

So clean degrades the hose and masks.

I change the hose, mask, tank and everything else replaceable except the machine every 6 months so it doesn’t matter to me.

 

[Markola]

OP, your post hit me. I've never used a cpap but should have, I had terrible symptoms and it sucked. After I retired I dropped 70 pounds and all my symptoms went away.

Your comments about cluster headaches were interesting. I had clusters for many years when I worked. Oddly I haven't had one in the last 7+ years since I left the workplace. I attributed them to stress and never thought about sleep quality and my horrible snoring. Interesting too, the last treatment they tried was Oxygen.

You know, I was in a terrible “place” at work the exact day I got the first sleep test, because I had an impossible boss I needed to get away from. On the 2 hour drive back from the Mayo Clinic to my home in St. Paul with the test machine in the car, I pulled off the road by a stream to phone in and participate in my final staff meeting with him before I started at a new organization. On top of that stress, Mayo surprised me by loaning me the machine but then they told me I had to have it back the next morning (!), so I’d have to repeat the whole drive, and early. I was stressed on so many levels that I was certain I just didn’t sleep well the night of the first test, which caused the horrible scores. All that is to say, yes, stress may have very well caused the cluster headaches and changing jobs may also be the reason they haven’t returned. I’m glad to hear yours are gone too. Awful!

 

[BigMoneyJim]

I've been using a cpap for a year or two. I recently turned 50. It does change pressure when I exhale, so I don't know if that means it's a bipap or if it's just a fancy cpap.

I adjusted well enough to the "nasal pillows", and to my surprise I don't need a chinstrap.

Early on I had troubles occasionally with stuffy noses and being unable to breathe with the cpap on, especially after getting up in the middle of the night. Counterintuitively to me, nasal irrigation with a saline spray and then just calming down a bit opens them back up enough to get back on the cpap. (Yay for Google and YouTube research!)

Oddly I didn't feel noticeably more energetic like everyone claims, but I was always tired ready to go to bed at appropriate times after getting the cpap which was a change for me. I've also tended to stay on a day schedule while using the cpap since retiring, and in the past if I didn't set an alarm for work for a few days my sleep schedule would be all over the place.

I'm not the absolute best at cleaning, but I think a cleaning machine would just be more trouble than it's worth. A bucket with hot soapy water is simple enough, and my most recent "trick" to keep air out of the hoses is to briefly siphon some water through them.

 

[swakyaby]

Four years ago, I asked my primary care doc for a referral for a sleep study due to my spouse’s report of my noisy breathing. The sleep study showed “moderately severe” apnea, with 1 hour of O2 saturation dropping repeatedly to 62% during the REM sleep cycle. I received a Resmed CPAP machine with a nasal mask and I tolerate it very well. I went from 21 apnea episodes an hour to <1 episode an hour. Before the CPAP, I used to crave a daily afternoon nap to relieve a dull lack of sleep headache, but now can go the entire day without need for a nap. But most of all, I know that my heart is healthier and my brain is healthier not having to suffer repeated prolonged hypoxic periods every night.

Last summer, I had a 16 day planned travel to South America. I bought a Phillips travel CPAP machine (these machines are not inexpensive!), power adapters, and specially labeled bottles of distilled water labeled “for CPAP.” The label allowed me to get the bottles of water in my carryon past TSA inspection checkpoint, although they inserted one bottle in an analyzer to be sure. I just didn’t want to land in a foreign country with poor water sanitation and have to search for distilled water.

For cleaning, each morning I use a baby wipe to thoroughly wipe the surface of my mask. I have been soaking the tubing, mask, and humidifier in warm sudsy water each week. More recently, I acquired the Lumin UV sanitizer that kills viruses and bacteria on my mask and humidifier. I use this weekly in addition to my usual soak and rinse, and it seems the best I can do.

Replacement parts—filters, masks, etc—can be purchased online for nearly 1/3 of what it costs at the sleep clinic. I keep the product package identification to make sure I order exactly what I received before.

 

[Lawrencewendall]

Forgot to mention that I went from 2 pots of coffee a day to one cup a day after starting CPAP therapy. YMMV.