CPAP machines...the good, the bad, and the ugly

[Narnian_Princess]

My grandfather uses one of these machines; the newer ones may be better but his is VERY noisy.

A bit embarrassing... I wasn't paying attention before I opened this thread and thought it said CRAP machines...

 

[Lachesis00]

I think this is the machine we both have.

We do notice we're sleeping a lot lighter (anything ---especially noises wake us easily). Drives me nuts! I am a light sleeper anyway, but this is amazingly light. Even if I nap I have no problems sleeping at night--falling asleep. If it is quiet (I've been running a fan on high to help combat noises) I have no problem.

I do seem to feel dehydrated when I wake. I woke at 5am and then slept til 8am (after falling asleep after 2am--which is not uncommon for me, even with out napping). I don't think I am sleeping with my mouth open.

I have a heck of a time not falling asleep. Even while watching TV. I am hoping over time, I get my energy back. I have zero energy. Thats one of the many issues the doctor thinks may be caused by the sleep apnea. Short term memory loss, well even some long term is what bugs me the most

Mine is set at 5, my husband is at 15 right now. He no longer snores. So thats good. So far like me, he does not feel rested at all when waking.

It can take several weeks for the body to adjust to the CPAP therapy. Each person's response to the therapy is unique.

I have been using my CPAP machine (the Resmed S8 Elite, with Resmed's own brand of C-Flex incorporated into the unit) for about 2 weeks now. Initially I had to overcome the urge to lay down for a nap during the day -- it's how I've had to live for the better part of 20 years. I don't necessarily feel particularly rested when I awake in the morning, but I have not had a nap since I've had the machine nor have I had those nasty incidents when I would spontaneously fall asleep due to absolute exhaustion.

My unit is set for 13 cm of pressure -- a fairly high pressure -- and I use the nasal pillows instead of a full face or nasal mask. I sleep well through the night -- I don't wake up constantly and I don't have a pastey mouth when I do awaken. I was having to drink lots of water to combat the dehydration and then having to get up to use the bathroom and get another drink to combat the dehydration again. It was a nasty cycle that I have finally beaten.

Best of all, my wife is also sleeping well now that I'm using my machine.

 

[Boston5602]

ok soooooooo I won't discuss this stuff with my family because well they are right and I don't want to hear it but since you guys deal with this here I go........

I had a couple of nights of sleep study 2 years ago and was told I had severe sleep apnea . Doctor had me go on cpap right away and I HATED IT. I thought it will be ok as soon as I get used to it. I used it for almost 3 months waiting to feel better. I never felt better because I had trouble slepping with the mask. I tried full and partial mask and nothing. I couldn't sleep though the night and I was worse during the day. I went a couple of weeks without it then gave it another shot to see if it was just me not giving it a chance but nope still no good.

I stopped using it . I wouldn't go back to the Doctor because of what he had told me , which is if the cpap didn't work I would need surgery for 1 or all of the following , deviated septum, oversized tongue and small airway passage its been so long not sure if that was it or not. but it SCARED the heck out me .

as someone else said about memory....I really hope my memory problem is caused by this so when I do do something about it I remember better.

I know I need to do something . I always seem to say right after my next Disney trip I'll do something!


Thanks for listening !

 

[minkydog]

Personally, using a CPAP device literally changed my life! I couldn't believe how good I felt during the day.

Hear, hear I was recently diagnosed with severe sleep apnea, after putting up with snoring, waking, tossing, gagging, and nightmares for almost 10yrs. I know better,but I just wouldn't admit I had a problem. When I had the sleep study, the apnea was so bad they had to stop the study and put me on CPAP to get through the night.

CPAP has changed everything. It has taken some getting used to. I was so sleep deprived that it took about a month to really feel better. Now I pop it on and go right to sleep. I wake a few times at night, as opposed to waking multiple times an hour. I get up ready to meet the day, have tons of energy, and I no longer fall asleep in the car or during conversations.

 

[Ct_TiggerFan]

Hi all,


I have been a cpap user since 1995,
My intial sleep study show I had over 300 events on hour.
They put the machine on me duning the test and it was the best sleep I had in years.


I have been using mine ever since.
If you are committed to using the cpap machine it will help you.
I feel well rested every night, This is my second machine as the first wore out after about 7 years.

The biggest thing to get used to is the mask. I have a gel based mask and it helps, but some people have better success with the nasal plugs.


My DW has gotten use to the sound of the machine, it is a lot queiter than when I was snoring at night.

Tell you doctor what problems you have and they should be able to help you get used to the machine.


One trick, most machines now allow you to ramp up the speed,
so if you have a setting of 12 it will start out around 4 and over 5 mins build up to your setting.

 

[jfulcer]

A friend of mine was tested after I suggested he go also, and even after having the machine didn't feel how he thought he should. He went back and talked to his doctor and after ruling out a few more things, the doctor diagnosed him with a mild form of narcolepsy and kinda mentioned that he does see it often enough in people that have apnea to make him think there could be a link.

I'd suggest going back into the doctor for those who tried and it's not seeming to work for you. There could be other issues that were masked by the Apnea, including narcolepsy, restless legs syndrome/etc.

I would especially recommend this to Boston5602 as it sounds like it might be the case.

It also may be something as simple as they set the machine to the wrong setting, or you might need a little more. My Dad had to get his adjusted because he kept snoring with the mask on and the doctor just dialed his machine up a little bit and it was much better. He also had to go through a few masks before he came up with one he liked.

Good luck for those that are still working through this!

 

[Lachesis00]

I am not suppose to go back until the 13th of December, but I am wondering if I need to go back sooner.

One thing I did not mention, out of 6 nights, 3 nights I have woken up to a terrible smell... it's like that stinky stuff, AXE (pit juice).
The first night it was OVERWHELMING. I thought for sure my son was playing a trick on me (I went and checked and he was fast asleep. I even stayed up to make sure he wasn't pulling one over on me) as I HATE the smell of that stuff. The next night I didn't notice it. Third night I did (I always smelled it after Id been asleep... it would wake me up- it wasn't as intense as the first night, but enough to wake me). Skipped a night... forgot why. Wore it last night while watching TV and sure enough after an hour, the smell started wafting into the mask... It was enough to bother me, where I felt like I wasn't/couldn't breath right.
Whatever is going on, it causes my sinuses to partially plug up. I can't tell if I am imagining it (my husband doesn't smell it) or if it is an allergic reaction to something (the gel/rubber stuff) or what is going on. I just want to cry. I want this to work.

 

[jfulcer]

Whatever is going on, it causes my sinuses to partially plug up. I can't tell if I am imagining it (my husband doesn't smell it) or if it is an allergic reaction to something (the gel/rubber stuff) or what is going on. I just want to cry. I want this to work.

IMHO, you need to wash everything from the hose up to the mask and straps with HOT soapy water. Just sounds like you need it to be cleaned - you need to do that every once in a while.

If you have a humidifier machine, I'd make sure you cleaned the resoivoir too. Also, if you use the humidifer, you may need to clean more often as water can condense in the hose and start to get, uh, yucky. I believe that this is an indication that it's doing TOO much humidity, but I could be wrong.

 

[Lachesis00]

Thanks for the advice. I will clean it out and see if that helps.

It has the humidifier but I haven't used it yet. There is water reservoir on it but along with the humidifier I have never used it.

What gets me, is we've had these machines a total of maybe one week? I think last Monday is when we picked them up. And the smell spectrum isn't as strong as the first time but maybe I am catching it faster or something.

Someone said their machine is loud? Ours, as long as the mask is on correctly are extremely quiet. Honestly you can't hear it unless the mask is off.

IMHO, you need to wash everything from the hose up to the mask and straps with HOT soapy water. Just sounds like you need it to be cleaned - you need to do that every once in a while.

If you have a humidifier machine, I'd make sure you cleaned the resoivoir too. Also, if you use the humidifer, you may need to clean more often as water can condense in the hose and start to get, uh, yucky. I believe that this is an indication that it's doing TOO much humidity, but I could be wrong.

 

[Crissup]

It's been 7 years for me. I have severe obstructive sleep apnea. The sleep lab decided to cancel the sleep study after a bit over an hour, and titrate me right away, because they were afraid I was going to have a stroke in their sleep lab.

I started out with a nasal gel seal mask that took me several months to fully get used to. I would adjust them incorrectly, then end up breaking the support tab that presses against the forhead. I finally learned that the secret to adjusting the mask is to not overtighten it. The initial tendency when it leaks is to believe that you need to strap it down tighter. In reality, this just causes it to deform your face more and create more air leaks. It also means that as you roll over on your pillow, and your face changes shape slightly, that new air leaks will be created. The secret is a light pressure so the mask basically floats on your face.

I did try nasal pillows for a while and could tolerate them, but went back to the mask. Eventually, I switched to the Nasal Aire II system, which is a nasal prong system. Basically, instead of nasal pillows, which press against the nostrils, a nasal prong system actually inserts about a quarter inch into your nostrils. It looks like a large oxygen supply you see heart patients wear on TV. I love the thing!! I can sleep on my stomach, wear glasses to read while wearing it, few leaks and no adjustment problems!

I'm going in a couple weeks to be retitrated again. My new sleep doctor wants me to try the new Swift mask, which is a nasal pillow system. I agreed we would start out with it, but if I don't like it, we'll switch back to my Nasal Aire II and titrate me with that instead.

Everyone seems to feel the Swift is the hot new mask. I'll decide for myself in a few weeks.

 

[themarquis]

I am not suppose to go back until the 13th of December, but I am wondering if I need to go back sooner.One thing I did not mention, out of 6 nights, 3 nights I have woken up to a terrible smell... it's like that stinky stuff, AXE (pit juice).

weird ....! I have heard a few people with cpaps complain about mysterious smells coming thru their masks... I haven't had any but if I don't clean mine often enough I get a nasty mildew smell (or as I like to call it "butt smell" ) for obvious reasons...

Definitely a thorough cleaning is in order for your hose and mask. Soap and water is good but a vinegar/water solution is stellar (check your manual but I thik its supposed to be 20 percent vinegar/80 percent water). Vinegar sounds stinky but you'll be doing a good rinse (vinegar is a mild acid so it kills any odor causing bacteria). If you hate the vinegar or it retains a bit of a smell, you can get some kind of disinfectant solution instead (ask your doc or a pharmacist).

The other thing I've heard is that sometimes something in your environment can get sucked into the tubes and its smell will be super-concentrated. Check your room for anything perfumed -- potpourri, perfume, hygeine products, air fresheners, etc. and replace them with unscented products. Don't clean your room with anything except unscented stuff.

Finally, most machines have a filter. There should be a compartment on the side with a spongy filter (some also have a ultra-fine filter which is disposable and you replace every month or so)... the spongy filter should be cleaned thoroughly every week in the same manner you clean the mask/hose.

good luck!

 

[themarquis]

ok soooooooo I won't discuss this stuff with my family because well they are right and I don't want to hear it but since you guys deal with this here I go........

I had a couple of nights of sleep study 2 years ago and was told I had severe sleep apnea . Doctor had me go on cpap right away and I HATED IT. I thought it will be ok as soon as I get used to it. I used it for almost 3 months waiting to feel better. I never felt better because I had trouble slepping with the mask. I tried full and partial mask and nothing. I couldn't sleep though the night and I was worse during the day. I went a couple of weeks without it then gave it another shot to see if it was just me not giving it a chance but nope still no good.

I stopped using it . I wouldn't go back to the Doctor because of what he had told me , which is if the cpap didn't work I would need surgery for 1 or all of the following , deviated septum, oversized tongue and small airway passage its been so long not sure if that was it or not. but it SCARED the heck out me .

as someone else said about memory....I really hope my memory problem is caused by this so when I do do something about it I remember better.

I know I need to do something . I always seem to say right after my next Disney trip I'll do something!


Thanks for listening !

Hi Boston, sorry you had so many problems with CPAP -- you are not the only one. The most important thing is to recognize that its okay to hate the therapy and its okay to have difficulties with masks & to accept yourself for having those feelings -- but that doesn't mean your should abandon it forever. If you were diabetic and had to start insulin shots, you'd probably have many of the same negative feelings, but you'd probably decide to stay the course because it would be a matter of life and death. Please don't forget that cpap therapy IS a matter of life and death. People with untreated apnea die on average at 3 times the rate of other people (from all causes -- heart attack, stroke (which are elevated with apnea), falling asleep at the wheel, having accidents due to clumsiness, suicide (depression risk is also elevated))

Enough lecture ...! Now, here's what I'm thinking: perhaps with a mask that you liked more, CPAP therapy would be easier to deal with for you. There are dozens of different masks out there, so if you were to work with a respiratory therapist (the ppl who fit masks at the medical supplier places) maybe they can find one that will work for you so you don't have to freak out about surgery. I'm curious which masks you've used in the past and specifically what kinds of problems they caused (in what ways did they feel uncomfortable, etc. -- could you not get into a good sleep position? did they rub or cause pressure? itching? jaw pain? etc) Another option would be a sleeping medication to help you get to sleep with the masks on. Please post again or PM me -- I'm going through many of the same issues and have not yet found a good mask, but I've gotten a taste of how good life is when CPAP is working.

 

[hiwaygal]

Wow!!!

I'm so glad that everyone is so informative and helpful!!! I'm also sad for those who are still having some problems.

I talked to my mother this weekend and she said she wasn't surprised that I have apnea, she did as well...but has chosen NOT to pursue any therapy I can't make her (no one can) but it saddens me that this condition is so easily treated and so many folks ignore it because of potential discomfort.

I had to learn to sleep with braces on my wrists for carpal tunnel syndrome. It took a few nights to get used to, but in the end, it was such a big help that it was worth it. I know this isn't the same, but it kinda is...I think the masks just take some getting used to...

Just so you all know, I started a thread about apnea on the new Coping and Compassion board...I hope to see some of you over there too!!!