After years of steadfastly refusing to address the problem (that of suspected sleep apnea), I finally gave in to H’s insistence that I seek an official medical opinion. So now it is official: Severe obstructive sleep apnea. A C-PAP machine is in my near future, the device my father refused to continue using after a month’s trial 20 years ago. I hear they’ve changed quite a bit since that time, being much quieter than before, for instance. I plan to do everything in my power to get used to sleeping with this device, so I hope it won’t prove too challenging.
Do you use a C-PAP? How long did it take to adjust? Any advice?
We just had dinner with friends who recently acquired a C-Pap. He said it took him at least one month to get used to it. For the first two weeks, he had trouble even sleeping with it.
But now, he wouldn’t sleep without it. He told me he used to get up every couple of hours at night (going to bathroom) and now he can sleep through the night without waking up and his energy level has increased.
I have used an ASV for 5 years (similar to cpap but more advanced as it controls breathing rather than just keeping the airway open)
Some tips:
Make sure you are given a machine that records data so that you can make sure it is helping. Some do not measure your AHI (apnea events) so you can’t tell if a pressure change is needed.
When you go for the titration study ask to try different styles of masks. The one that fits just against your nostrils is least annoying but some people don’t like the fell of the air pressure with such a small surface area
To get used to the cpap first use it in your family room or somewhere when you are NOT trying to fall asleep. This lets you get used to it without the stress of trying to sleep. Remind yourself it is not controlling your breathing in any
way. some people do well with a mantra or the like when trying to use it at first. Keep reminding yourself that it is your friend and not your enemy.
There is a really good web discussion board that I don’t know if I can provide here as it is commercially sponsored. PM me if you want it.
The new ones are very quiet. My husband has a Resmed S9 and you cannot hear the machine at all.
I agree that some folks have a bit of difficulty getting used to the CPAP, but studies have been shown that properly worn, it can help extend your life and help you have better quality of sleep. My brother and sis-IL had trouble adjusting but gradually, they are making peace with it. Brother now can’t sleep without it. My sis-IL is still warming up to it. My dad and other brother also have sleep apnea but so far have resisted the CPAP.
My husband swore he would never use one after seeing my ASV. His cardiologist made him go for a sleep study. After trying cpap during the overnight trial he came out saying he had never slept so well before and could not wait to get one.
My machine took some major getting used to as it controls my breath rate and volume. But it was the first item I packed when I went out of town overnight the other day. I sleep better with it than without it now.
Another tip. There are commercial pads for the straps that help prevent marks on your face in the morning. If you have problems with that.
My Dad is now 81 years old, and has had severe sleep apnea since time out of mind. He’s also had two open heart surgeries, the most recent being 4 years ago. I know that sleep apnea is implicated in heart disease. I’m hoping to avoid open heart surgery, if at all possible. I mean, getting used to C-PAP is bound to be a cake walk compared to recovery from OHS, right? Not that it’s necessarily an either/or proposition, though…
Whatever you do, have the cost completely billed out, NO RENTAL of the machine, otherwise the provider company, like Apria will milk your insurance dry, and they require direct deposit funds from your account every month. This has been a problem for us for the past year. (My husband’s previous machine broke, and he went in for a replacement. Apria was awful. The physician prescribes it, but the vendors supply it, so be careful before you sign any paperwork.
^^^agree with @KKmama, you have to ask and try different masks.
Thank you for that information, aunt bea. Does the insurance company not decide which supplier they’ll use to provide equipment and supplies to its customers? Perpetual rental does sound like a very bad idea.
Kkmama, I am scheduled to undergo a C-PAP sleep study in the sleep lab in order to learn which settings work best in addressing my SA. At that time, we will also try out various masks. They did say that my insurance provider, Blue Cross Blue Shiled, as shown a reluctance to cover in lab C-PAP studies in the past. If they refuse to pay, we’ll have to review other, apparently less optimal options. 8-|
In home me titrations are not the worst thing that can happen and make a lot of sense. You are given an auto-pap and the settings are left open. The tech then looks at the data to see what pressure the cpap hovered at for most of the night. Your machine is then set for that pressure or you are prescribed an auto-pap for a range of pressure
Cpap blows one constant pressure the entire night; auto-paps raise or lower the pressure according to need. Most users prefer them because they will receive the lower pressure until apnea events occur (for example some need more pressure if they roll onto their backs).
If you can get an auto pap instead of cpap do it! The dirty secret of medical suppliers is that insurance companies reimburse the same amount (and allow you to be charged same amount) for both machines. Insist on the auto and ask your doc to prescribe one. Autos work better for some people because of that adaptability. autos can always be set to work steady like cpap but gives you the option. If cpap is not right for you and you end up needing the auto, insurance companies rightly get cranky about paying for two machines.
Timely! My H just got his today, after two sleep studies–one to establish that he has both obstructive and central sleep apnea, and another to figure out the settings, I think. Then the guy brought it to the house this morning (I wasn’t there) to run through usage. not sure what type, but something advanced that does everything.
It is a rental, so we’ll see how that plays out. But after some scary heart stuff, and my absolutely knowing he had apnea for years, I am thrilled that he’ll have this.
His brother swears by his and will drive home hundreds of miles if he forgets to bring it on a trip.
H has always fought tiredness, and developed A-fit this past winter. So I’m hoping this makes a big difference in his health.
@garland. He probably has the ASV I use. They can be a pain to get used to. The machine tries to maintain his breathing pattern and changes pressure quite a bit. It also expects a specific timing and volume for each breath. Think of it as he and the machine learn to dance together - it can take awhile. For awhile it can seem like the machine is working against you. My biggest issue was that it wanted me to inhale while I was still exhaling and increase the pressure (the machine has a different pressure for both and is programmed for specific breath rates to treat the central apnea). I just exhaled a lot harder to let the machine know who is boss and eventually it adapts.
Took me a few weeks during which it took an hour orore to fall asleep. If he has issues work with the doc to tweak settings. It can take a few adjustments until it is right but it is well worth that effort
@KKmama --thanks! That’s really helpful. He is highly motivated, so I think he’ll get through the adjustment period (I however, being a very light sleeper, am probably going to be exhausted. But it will be worth it.)
Physician on CPAP here. Makes a huge difference. I tried various masks while at the sleep center several years ago. Went with a mask over my nose which in order to get the seal caused a nasal abrasion (which of course was infected, treated). Switched to nasal version for the Res Med machine (love that brand). Got a new machine a few years ago and now wanting the even newer version. Mine is set with variable parameters so the max pressure can go higher if needed. The later nasal pillows versions are even quieter than my original. I’m a side sleeper so I do need to use a pillow that doesn’t bury my face causing the airflow out to make noise against it. The head gear is easy and comfortable.
Cleaning- Ivory brand dish detergent was recommended to me (as was baby stuff) is mild enough to not cause any problems with the soft silicone nasal pillows or masks. I clean the pillows part daily and do the whole setup less frequently so it is not a burden. Now living in humid Florida I no longer put water in my humidifier- when I did I used only distilled water.
It does take getting used to. Like wearing glasses or rings- it is something THERE to adjust to. Taking care of things becomes a quick habit.
There will be a travel case for taking it with you. I added a small plastic bottle of Ivory liquid and an extension cord to the stuff because I have been a guest where the nearest outlet is too far for the cord or the hotel outlet was used and I put both the lamp and machine on the same one. At home I use a surge protector.
Airlines will accept the machine as an extra medical device beyond the number allowed for carryon. Be sure you carry it instead of checking it so it can’t be stolen (same as electronics and other valuables). A few times I have told personnel it is allowed as an extra besides my purse and carryon bag when they were being doubtful.
The noise does bother my H if I am facing him too close- one reason we upsized to a king bed. It is the turbulent airflow hitting the pillow that does it, not the now very quiet machine.
There will be variables that can be changed based on your needs and experiences. Mine starts with 5 cm pressure then ramps up to my typical needs. I push the on button, get 5, then push longer to get maximum airflow to check for leaks (usually none by now, I know the feel of a well placed nasal pillow), then off/on to 5 again. There is some airflow after turning the machine off - much quieter than if you take it off without remembering to turn it off. There is a learning curve (like with everything). Try some settings and with your respiratory therapist’s help/guidance choose the settings that you prefer. Some settings will not be adjustable by you but some will. Ask questions!
Wow, it all sounds a bit…involved. In my head, there are images of my sleeping self that feature me looking like a bit of a Frankenstein’s monster, a victim in a medical thriller, or perhaps Darth Vader. It’s somewhat disconcerting. I’m glad we no longer have small children in the house who could be freaked out at the sight of me asleep. It’s bad enough that H. gets to see me rigged out that way. The cat may avoid me for days. :">
I use the ResMed S9 machine and the ResMed Swift FX for Her nasal pillows system. I started out with a full face mask and I just couldn’t do it as I am EXTREMELY claustrophobic and couldn’t deal with having something covering my mouth and nose. I tried a couple of other nasal masks before finding my current mask and, after using it for a couple of years, I have gotten so comfortable with it that I sometimes forget I have it on. I thought I might have to use a chin strap with the nasal mask because I’ve always breathed quite heavily through my mouth due to some sinus problems, but those have since been taken care of with surgery. When I have a cold, or if my allergies are really bothersome, I do have trouble keeping the mask on the entire night, but that is not often. If don’t wear the mask, I wake up in a panic, gasping for breath and having chest pain. The machine is very quiet and my husband has mentioned several times that he wondered if it was even on because he couldn’t hear it. My medical supply guy set the machine based on my doctor’s orders and I never touch the settings. I just use the on and off button. My machine is set for 8-14 as it fluctuates with my sleep position (I need less on my side than on my back).
