new to CPAP & trouble adapting

Hi, me name is Tara and I'm new here....

So, I've been pretty sure that I have sleep apnea, for quite some time, just never had a sleep study to officially diagnosis it. I finally had 2 sleep studies done: to diagnosis it & determine what pressure I need to treat it. My cardiologist/Pulmonary Hypertension (PH) specialist has arrived @ the conclusion that my PH is due to sleep apnea. So, I figured that I REALLY hafta try to treat & deal with the apnea, to hopefully prevent further worsening of the PH and mild L side heart failure.

The neurologist determined I needed a CPAP and set it at 7. When I had the second sleep study done with the face mask I realized that I don't sleep very well with it, so my cardiologist/PH specialist suggested asking for the nasal pillows. I got those rather than the mask but I'm still barely able to sleep with it.

So, I've had this machine for a little over a week and only been able to sleep with it for nine hours (it has a recorder & evidently the insurance company will periodically ask for that number to determine if I am indeed using the machine). I either cannot fall asleep (and lie awake in bed for up to three hours before ripping it off my face) or fall asleep (if dead tired) and wake up soon (1-2 hours) to rip the thing off my face.

Does anybody have any tips as to how I could better adapt to this darn thing? I know the noise doesn't bother me...it comforts me (I always sleep with a fan on, for the noise to lull me to sleep). I've also tried having a drink or two, to help me relax...to no avail. Also, I do have a humidifier with it and do use that.

I also posted on a PH site (that is the primary thing that I want to prevent worsening of) and some people were mentioning some type of mouth piece that evidently goes in your mouth only and doesn't have straps attached to it??? That sounds sorta promising.
Any helpful tips or suggestions!!!??? Any & all comments are welcome & appreciated! Thanks for reading & have a great day!!!
tara

Tara, let us know what interface and machine you have and I'm sure there will be people with specific advice to help you get comfortable. You might try using it while you try a nap or some quiet activity to help you adjust to the new sensations. Just try to tough it out for the first few weeks until you have made any adjustments to your. 7cm is pretty low and it's been mentioned that low pressure can be somewhat uncomfortable at first. Keep us posted on your progress!

Tara, I know exactly how you feel because I am going through the same thing. It took thirteen nights before I could even doze off with the CPAP on. I hate everything about it! I can't stand anything on my head or face EVER, so I don't know what the solution is. I have the cannula pillars(?) which I can tolerate, but they get dislodged when I move. I am a restless sleeper due to other problems. There must be an answer some where.....
Marsha

Tara and Marsha........I'm a-going to give the both of you the same advice.....and you may think it kinda silly......BUT........Fighting with your equipment is absolutely counter productive.......make friends with it. Afterall, it's your life we're talking about.......and if you just can't stand your nasal interface, you just may have to try a mask. There are a lot of options out there, and for some finding the right interface can take a while......but in the meantime....as a previous poster suggested, try wearing it....just for a little while at a time while you read, watch tv or some such thing......break yourself in to having that THING on your face.....you know, at one time or another ALL of us here had to do that......and some had serious issues about having something on their face, until they taught themselves to accept it. And that is the other thing....learning to accept it as part of your life. Come here as often as you like and ask us anything.....this is a wonderfully supportive bunch of folks.......you might even get a giggle out of some of our nonsense......and that can be part of the therapy too.......If you have any of the feelings I had when I first came here, you may be feeling a little embarrassed or ashamed or just plain down in the dumps about it all.....We know about that stuff too......been there......done that. Good luck to both of you..and don't give up.....

Gidgie, you beat me, the only thing I could add, is a drink or two might settle you down but it also makes your apnea worse ans well as your general health, have some warm tea with honey before bed. (I like Green Tea and it not bitter)

Making up your mind you are going to get better is what it takes. Can't never gets it done, no option. Jim

When you get to 8 hours a night, you will see it's worth it!

That's what I forgot.......one day, everything will just kinda fall into place......speaking of falling into place......it's been a long day, I'm tired and footsore and there's one humdinger of a thunderstorm goin' on out there........Bedtime, folks!

hi tara:

many of us have been through or are going through what you are going through.

the only specific thing that i would add is that you should probably ask your doctor to prescribe a sleeping aid to use short-term until you get more used to this if this continues much longer. you can also buy the ingredients in benedryl, which are sold as a generic sleep aid over-the-counter if you are hesitant to go the prescription route. that has helped some people. at some point you just need some sleep, but you have to keep working with the equipment, whether for a nap or all nite. i think a sleeping pill and continuing to work with the equipment is better than no sleeping pill and not using the equipment. you can always get off the sleeping pill, otc or prescription, once you can handle the equipment.

gidgie's advice is right on. whatever you have to do to find a way to make this work, do it. and basically making friends with it is the right thing, whatever it takes.

now, it probably will involve trying a few different nasal masks and/or nasal pillows and/or face mask to make this thing work, and the specific equipment is most likely only part of the problem, meaning that the problem may be there regardless of what type of equipment you use. but are the nasal pillows more uncomfortable than what you initially tried during the sleep study? if so, i might go back to that. it's kind of a vicious cycle. You can't be comfortable until you have tolerable equipment, and you can't tolerate equipment until you're comfortable. but getting some level of comfort with what you have, i think, is the first priority.

keep working with the equipment. your situation is not all that unusual. but don't give up on the equipment.

good luck. and oh, you've come to the right place. keep posting as you go through different stages or whenever you need it.

caroline

Hi everybody & thanks for the speedy replies. My machine is a REMstar Pro2 with C-flex with a heated humidifier & ramp feature to gradually build up to 7.

I'm pretty sure the pillows fit me properly...there isn't any type of air coming out, other than what should be thru the vents.

This may sound stupid....but I ALWAYS sleep on my rite side/belly (can't fall asleep on my back). But, I'm having issues with a R-side rib, so my chiropractor told me to avoid sleepin on the rite...which I've been doing, so maybe that is why I can't adapt to this?!?! I know it sounds crazy, but I'm so dead tired when I get home from working (third shift....I know I need to get off that shift, but it's only til I'm thru with nursing school this summer!) and usually I just dose rite off...but I've yet to try the CPAP on my "normal" sleeping side, so hopefully today will go well.

Also, does anybody know anything about a mouthpiece that doesn't have head straps? (I heard about it somewhere else...and it gave the impression that there are no head straps needed). Just curious.

Thanks once again for all you input & suggestions, I DO appreciate it. Sweet dreams to everybody!!!
tara

Maybe the person who told you about the mouth piece with no straps is talking about getting a mouth piece from the dentist? I know some people do that, but my doctor told me that it only reduces the apnea in some people. However, since you need such a low pressure, maybe that is something that would work for you? I had a hard time with nasal pillows which is what I started out with, I am doing much better with the cushion.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Nasal Pillows

Tara,

All of the above advice is very good. I didn't find it a problem getting used to CPAP, possibly because I did start watching TV with the device on and working for an hour before going to bed.

There's several things I'd suggest.

1) Make sure you are very tired, to the point of feeling like you are going to doze off and then get yourself off to bed with the CPAP. Usually I find if I'm not that tired, I can lay awake for an hour or more (just like pre-CPAP), but if I'm tired, I go off like a light.

2) You need to ask yourself why you are ripping the mask off ? Is it that you feel suffocated ? You can't stand the air pressure ? You can't stand the noise of the machine ? Are you finding too many leaks ? Once you know the reason, try and resolve it where possible. If it's a noisey machine, there are ways of shutting it in a bedside cabinet draw or putting a box over it. If it's the air pressure, perhaps you need to start with a lower pressure (RAMP) or change the mask type etc.

It may take a little while to get used to at first, but once you can sustain a full nights use of CPAP it will be much easier to contend with on a daily basis!

Lots of good advice already offered and I think it's a case of keep trying until you find what works for you. Please do persevere, it really is worth it and we've all been through similar challenges before starting to feel the benefit. Remember that you are trying to get used to a whole range of unfamiliar things in one go, so it may take a while. When I was struggling to sleep in the early days, I found napping in an armchair sitting up with the equipment on helped me to get used to it.
Good luck and keep asking questions - there's a wealth of experience and knowledge here.

crazin_82 wrote:Also, does anybody know anything about a mouthpiece that doesn't have head straps? (I heard about it somewhere else...and it gave the impression that there are no head straps needed). Just curious.

You may be thinking about the CPAP Pro. Most folks have not reported good experiences with it. Search this site for cpappro (all one word) to find posts about it.

Everything everyone has offered are good tips. It is a struggle at first. You may be too tired as well. I know that when I am too tired I have a difficult time sleeping. Some sort of relaxation process before going to sleep may help. Stretching, meditation, soft quiet music. Good sleep hygiene is important.


Good luck, hang in there, it does get better.

David

I just wanted to mention that, a very long time ago when I was diagnosed with OSA, the issue that pointed to it was an enlarged primary pulmonary artery, which can result in those sorts of hypertension. The doctor ordered the study because of pneumonia - and I've been carrying the machine ever since - and, overall, when things work, feeling a LOT better.

And the issues in the pulmonary circulation returned to normal over a couple of years - there is no longer an abnormality there, I'm told.

The main comfort issue that people have is breathing out against the CPAP, or so I understand it. There are three schemes that people use to get more comfortable with breathing against the pressure - one is using a totally different machine that provides a whole different pressure for exhalation, and the others are momentary relief of pressure when you exhale - C-Flex is one of those schemes - and, again in my opinion, C-Flex is really good - really, really good - my CPAP has C-Flex and based on the description, I expected not to notice it much at all. Well, wow! It really works a ton better than I would have thought.

You can reset the level of C-Flex that you are using - one provides the least relief, and three provides the most. This is considered to be solely comfort, so you can change it from patient menus and you might consider changing it. Your manual tells you how.

I'm always surprised when people suggest caffeine containing drinks as calming, pre-sleep drinks, but I know my half-sister drinks a black double espresso to relax before sleep so it takes all kinds. Personally, I tend to like a tawny port or even a sherry - you mentioned a bit of alcohol. Others have suggested prescription pills - things like Sonata really work for many.

It is unfortunate that your sleep related health problems have advanced so far, and I know that you want to make it work. It can be made to work.

I'm going to try and summarize your problems:

During your sleep study, you tried to sleep in a "regular mask". The regular mask didn't initially work for you. Now you have a set of pillows. I'm not sure which ones (there are a ton of different ones, and they are all different).

But you find that when you sleep on your side, you can't keep the pillows in place.

The machine bothers you and your time to sleep exceeds three hours, so you take it off and go to sleep.

Alternatively, you fall asleep and you wake up after a couple hours. You would wake up about this time anyway - sort of unconsciously check your surroundings and go back to sleep and not remember it - this is part of the typical human sleep cycle - it is one of the things that kept us alive on the African Veldt when we slept with the other members of our tribe - but in this case, you see the mask as a disturbance and it wakes you all the way up.

And you wake up and take the machine off.

I'm going to suggest something to you:

Stop taking the machine off.

I've been trying to understand why, with what was an essentially horrible mask, and all these same experiences and no C-Flex, and no humidifier, I managed to get through the the adjustment period? I didn't have it as hard as a lot of people do today, but as I think back to my experiences, they were a lot like yours - I had trouble getting to sleep, but, well, I was used to intermittent insomnia back then as part of my general pattern of sleep disturbances. So sitting there for a few hours didn't bother me as much - and I didn't take the mask off.

And I would wake up at night - and the mask would be there - and I would just lay there until I got back to sleep.

The answer was that I never considered taking the machine off an option. If I could not get to sleep, I just stayed awake all night, with the mask on. I watched TV (mask was in the way, could not read that well). Then I called in sick as I slept the next day, with the mask on.

When I woke up at night and the machine was on and it woke me all the way up, I laid there until I went back to sleep.

Many people have problems sleeping in sleep studies. I have had problems sleeping in sleep studies too.

You do want to be comfortable with your equipment - and you have first class equipment - play with the C-Flex level and the hunmidifier level.

Try different masks - I have a horrible mask right now that I simply can't sleep in - but when it wakes me or when I decide that I can't sleep with it on, the option is not to just take it off and go to sleep - the option is to change masks to one I can wear.

If it were the only mask I had, I'd try taping it to my face or holding it in place with pantyhose stretched over my head.

You know you have a severe problem, you know that you have something that has a good history of treating the problem (as I understand it) and you gotta get over the hump of dealing with the treatment.

So make a plan. See your doctor, get a couple weeks of whatever strong sleep aid the doctor feels is viable.

Get a mask or two. cpap.com sells good masks inexpensively. Get another nasal mask like the kind you could not tolerate briefly in your sleep study - they really are not that bad. Call them up, ask for fitting guidance and a brand suggestion. You have nasal pillows. Unless you REALLY think that the headgear is the part of the system that bothers you I would not spend the money for the cpappro - it costs more than any other mask I know of and I can't imagine biting something and holding it all night. Sounds a lot like bruxism.

Search for your particular brand of mask here - and see what others have done to fix problems that they have had with it. Get some polident - many people have used it to close their lips and seal their masks. Get a pair of pantyhose to pull over your head. Get some moleskin. Get some tape, some saran wrap and a scissors. This is your "I'm gonna do it" kit.

Decide that on a certain day, you have everything you need, and that you no longer have the option of taking your mask off and going to sleep when you have a problem. You have the option of calling someone for help, or of trying different things or of just about anything - but you do not have the option of taking your mask off and going to sleep....because when you rouse 60 times an hour you really are not sleeping.

So, you have the corner of the headgear digging into your face - you take the gear off, pad it with moleskin, and put it back on.

Your nasal pillows don't work on your left side - and you take them off, and switch to the nose mask and lay back down.

The nose mask leaks a little into your eyes - and you put a dab of polident on it and put it back on and go back to sleep.

There is a leak in the hose that whistles - and you either use the saran wrap to make a fitting gasket or you use the tape on it.

Maybe I'm being simple here, but, well, if the option of taking the mask off and turning the machine off and going back to sleep was not on the table, then it would not be a problem. Yep, you'll lay there awake, What was your diagnosed AHI ? How many times an hour were you waking up? How much different is laying there from sleeping without the machine?

Anyway, I think you can do it. You sound strong and determined - and you came here to seek help which is more than a lot of people would do. Good luck.

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CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, hose, cpap.com, C-FLEX, CPAP, AHI, seal, Nasal Pillows, Prescription, Bruxism

[quote="crazin_82"]Hi, me name is Tara and I'm new here....

I also posted on a PH site (that is the primary thing that I want to prevent worsening of) and some people were mentioning some type of mouth piece that evidently goes in your mouth only and doesn't have straps attached to it??? That sounds sorta promising.
Any helpful tips or suggestions!!!??? Any & all comments are welcome & appreciated! Thanks for reading & have a great day!!!
tara

Tara,

You mention that your pressure is 7 and you slowly ramp up to 7. What pressure do you start at? I find that I can hardly breather below 7 or 8 so I can' t imagine ramping up to that. Would make me very uncomfortable.