Help my man with his CPAP

[camaromom]

Hey, manaburn or any other person out there who has tried a CPAP I have a couple of questions.
DH is 230 lbs and about 5'8". He went in for a sleep study and flunked. He now needs a CPAP at night. We got it last Thursday and he is only tolerating it about 3 hours at night.
1) What kind of mask do you recommend?
2) How long did it take for you to get used to using it?
3) Do you have humidification and if you do does it help?
4) Should he be waking up feeling like he cannot breathe? He keeps saying that is how he feels so he takes it off.
5) Kinda personal, but I feel like I can't cuddle or get close when he has it on. Does it bother you to have you SO near in the bed while you have that space mask on?
6) What benefits did you notice from using the CPAP? So far, since he's used it so little he isn't feeling any more refreshed.

Thanks for all your help! I don't know what I'd do without you fellow LCers for support.

[PlayDoh]

my mom has a cpap, has for years right now. what we were told by her doctors was that her stopping breathing at night caused her polycythemia. she's been using it for a long time now, but often she rips it off in the night because it dries her out so bad, so you might want to consider getting the humidifier for that reason. it takes awhile to get used to the feeling of air being forced in. it might be making him feel like he can't breathe, but he should be breathing fine. feeling like you can't breathe is a very scary feeling though. maybe it needs to be ajusted down? i think we might have to have that done for my mom. after she had pnuemonia, the doctor ordered it up to 18, and it is so forceful now, she won't wear it. i figure better to wear it at a lesser pressure than not at all. also, does his cpap have ramping? that might make it easier to get used to. it starts it out slowly and works up to the level you need over a period of time.

he should feel better, it just may take some time. it stands to reason that eventually he would feel better because at this point, he has been oxygen deprived at night, for who knows how long. tell me this, did your husband used to drop off to sleep all the time in the middle of the day?

[jeff-az]

camaromom,

I was diagnosed last year with Sleep Apnea and now use a CPAP machine every night. It gave me my life back, but it wasn't overnight. It took me a few weeks to feel completely better but each day was better than the last. There are many many options available for masks and machines and you need to find the right combination. Your doctor may not be able to tell you and you definitely don't want to listen to the DME (where you got your equipment). The people that work at the DME's are clueless and do not have your best interests in mind. Trust me on this.

Go here and start reading. It's the best forum on the 'Net for us hoseheads. :) All your questions can be answered there.
http://www.apneasupport.org/

I will give you my opinions here:

1) The mask is highly individual, what's best for me may not work at all for your DH. I use the Breeze Nasal Pillows and they're great for me. I have also used the Mirage Swift and it's also a good mask (for me).

2) It took me a few weeks to feel better and that's true for a lot of people. Some people feel like entirely new people after just the first night. It's very important to have the right machine and mask though, it will make all the difference.

3) I use a heated humidifier and so do most people. It helps a lot and your doctor should have prescribed one with the CPAP machine. Unless you're in an extremely humid environment and don't suffer from a dry mouth or nose after using CPAP, then you'll need the humidifier.

4) It doesn't sound like he has the machine setup correctly. Can't help you without knowing the results of his sleep study and the mask/machine he is using. You really need to register at the above mentioned web site and ask these questions over there.

5) Doesn't bother me if it doesn't bother her.

6) See number 2

[Lisa N]

what we were told by her doctors was that her stopping breathing at night caused her polycythemia.

Interesting that you should mention that. I have a friend who is going through the same thing. Did the polycythemia ever correct itself or get better with the CPAP use?

[camaromom]

Thanks for the replies and the link. DH is really struggling with this and I know that he really isn't crazy about it. I just want him to be alive and healthy.

[MrMoose]

Hey, manaburn or any other person out there who has tried a CPAP I have a couple of questions.
DH is 230 lbs and about 5'8". He went in for a sleep study and flunked. He now needs a CPAP at night. We got it last Thursday and he is only tolerating it about 3 hours at night.
1) What kind of mask do you recommend?
2) How long did it take for you to get used to using it?
3) Do you have humidification and if you do does it help?
4) Should he be waking up feeling like he cannot breathe? He keeps saying that is how he feels so he takes it off.
5) Kinda personal, but I feel like I can't cuddle or get close when he has it on. Does it bother you to have you SO near in the bed while you have that space mask on?
6) What benefits did you notice from using the CPAP? So far, since he's used it so little he isn't feeling any more refreshed.

Thanks for all your help! I don't know what I'd do without you fellow LCers for support.

The only masks I have used are the basic Sullivan in a couple of variateions. It didn't take more than a couple of weeks to get used to it. Using the slow start buttons help some people but I always felt like I couldn't inhale when I used them so I just go full power right away.

I don't have a humidifier but probably should (too cheap to get one and too lazy to keep it clean).

As for feeling like he can't breathe make sure that the vent is not getting blocked somehow. He might see if he can find a mask with a larger vent. When you breathe out you are adding a lot of air to the mask and it has to be able to vent properly or the pressure will get too high.

I had 60 apneas an hour before treatment. I definitely got relief from it in short order.Of course YMMV. I figure I would probably be dead if not for CPAP. I would discuss the problems with his sleep specialists. I suspect they have dealt with similar problems before.

mike

[PlayDoh]

hi lisa :wave: :D

the polycythemia did eventually correct itself, has been in remission for over 5 years now, and the cpap has definitely helped, but it wasn't the catalyst for the road to remission. what was is, my mom had to go every two weeks and get her blood drawn off. she hated it as it was painful and she said sometimes her blood was so thick that they'd have to roll something over the tubing to get it to move through. she did it for a very long time until her doctors told her the polycythema was in remission. the cpap helped level things back out, it was just a slower contribution, but an important one. now she is on oxygen and i am sure that helps immensely as well. the blood had to be thrown away, she was told it couldn't be used in any capacity. we were also told that polycythemia out of control could turn into full blown lukemia. thankfully we never reached that point. i am a bit suprised that with all her breathing difficulties of late, that it hasn't begun to make a reappearance.

i hope your friend is on the road to recovery :) it was very scary to all of a sudden hear my mom had a serious blood disease and i am sure it was frightening for your friend too.

i haven't looked into it in awhile because sometimes remission+relief=see no evil :lol: but if i see any newer interesting information, i'll be sure to send it your way. it really is something we need to stay on top of. thanks for reminding me :)

:D

[eyesofblue]

I have used my cpap since 1996, I love it. In fact I can't sleep without it now.

I use nasal pillows. Over the years I have tried two other masks, I couldn't make it through the night with them. I love the nasal pillows.

I don't have a humidifer, when I get a new one I will probably get one with a humidifer.

Is his c-pap one where the pressure is set (for example mine is at 15), or is his a bi-pap, where the pressure ebbs and flows. Also, a few months ago when I went in to my supplier for new head gear we were talking about new machines (mine is so old they don't even make replacement parts for it). He told me that there are new machines out there that you don't set the pressure on (I don't remember what they are called), but they have a sensor in them and they adjust the air flow on their own throughout the night as it detects you having problems breathing. The representive told me that he has a lot of people complain about the machines that do this because the pressure is not consistent. I will be sure not to purchase a machine like that. I am very sensitive to pressure changes. I wake up gasping when there is a power outage or if I am moving around too much and pull the tube from the machine.

My husband is ok with my cpap. That is one of the benifits of the nasal pillow is you have more flexibility. I can lay on my side, my back and even my stomach. The only problem when I sleep on his shoulder is I feel bad about the air blowing on him, so I pull the blanket up so the air hits the blanket instead of him.

When I first got it, it took me awhile to get used to it and I had to use the ramp feature (got to full power over 10 min). I also had to sleep on my back and just concentrate on breathing in and out.

I hope this helps.

[camaromom]

I had DH read this thread last night and he checked out the links. He did point out to me that he is not crazy, it does make him feel like he can't breathe. Basically, he snores LOUDLY at night and stops breathing - it scares me half to death. His doc sent him for the sleep study and he does have up to 30 sec apneas. We went last Thursday and got his CPAP. It does have humidification, it ramps up from 4 to 10 over I think 20 minutes. It goes no higher than 10 for the rest of the night. I just worry sometimes when he has it on that I'm going to hit it and give him a big ole bruise or something. I'm used to him sleeping on his side or stomach so I'm used to cuddling at night. With the CPAP he is sleeping on his back and I'm really not sure where to sleep, so I've been in my recliner for the last several nights. Not really conducive to my sleep, but like I said I've lost my snuggle partner and I'm afraid to get too close. I'm sure as with all things new this will pass. Thanks again for all the great replies.

[Faithinme]

My DB also has sleep apnea and wears a mask. After him using one of the big bulky masks we came up on on of the most perfect masks that I have ever seen!! It's not even a mask really, it has a hose that fits in each nostril and runs down to hook into the cpap machine.

It's hard to explain, here is the web address, check it out: www.cpappro.com

I am so glad that we tried it, it is so much less bulky and I am able to get close to him if I want to when he has it on.

[Flower51]

Go to www.cpaptalk.com Their site is so helpful and encouraging esp to newbies. It made a world of diff for me and questions are always welcome.

My mask is the Innomed NasalAire II. It is so lightweight you can barely feel it on your face and rather than a mask that feels invasive, there are soft nasal "prongs" that insert in the nostrils and attach to lightweight tubes supplying the air. I feel so much better since using this in June. If you use the Nasal Aire make sure you get the right size prongs. They should be large enough to make a "seal" so that if you hold one nostril shut and breath out, there is no air escaping around the other prong. Leaks cause noise and are also not comfy at night. Also use a lubricant, like a generic ky gel (the old fasihoned kind) on the prongs so your nose isn't sore. From what I understand from other posters on cpaptalk, getting a mask that you find comfortable is key in being able to use this therapy.

The humidifier is great. Mine has a heat button that warms the cold air coming into the machine so it is more comfortable flowing into my nose. Also it prevents your nose from getting dried out and feels so much better than my normal condition upon waking in the morning...no more seasonal allergies either!!!!!!!!!!!!!! No more colds!!!!!!!!!!!!! Its been great.

Also....I have an autopap which is diff than a straight cpap or bipap. The autopap automatically adjusts to the air pressure you need throughout the night, so you aren't getting a strong blast of air all through the night, just at the times you need it to prevent apneaic events. It can be difficult to get your dme to agree to the auto because they don't get as much of a kickback from the ins co for them. Its more like natural breathing and if you convince your dr that the comfort level would help you be compliant in using the therapy, most likely he will write a script for it.

Can't for sure speak for your dh, but he may need your reassurance and cuddles even more now because, believe me, at first there is a real lack of confidence and feeling less than attractive wearing this stuff....anything you can do to lessen the feeling that this equipment has invaded your bedroom and made it look like a hospital, or that he is "darth vader" is something I'm sure he'd appreciate. I have soft relaxing colors...soothing pale greens, cream, some people like blue in our room. I have soft fabrics and really cleared out the room so it is uncluttered and "minimalist" but still has pretty touches...soft lighting, candles (as long as he doesnt' use an oxygen tank!). I cover the machine (unplugged so it doesn't overheat) w/a patchwork pillow sham when its not in use. Try to guard your time together and keep the room as simple and beautiful as you can (most of my stuff I picked up at the thrift store and it didn't cost much)....if he doesn't want to cuddle he'll let you know. He prob needs those cuddles for reassurance more than ever now. Give him time to adapt...for me it was a matter of just a couple of days. Most people take longer.

Hope this helps get your questions answered on the cpap talk board. :wave: Terry

[Dazed1]

Interesting information on this thread. I has used the humidified CPAP for over a year now and while it is not always perfect I had no problem adjusting to it. The one thing I have found is that it is much better to keep the bedroom cooler than before I used CPAP. If you get warm the mask can make you feel like you can't breath. It also helps to have a fan going. I also have enlarged prostrate so I don't really know if I awake because of the mask or the prostrate,

[Flower51]

I agree but I've always liked sleeping in a cooler room...even if I'm under a big fluffy quilt something about the cool air is better for sleeping. My dh is just the opposite...he's always wanting it warm and I'd opent the windows!

Have you had any prob w/rainout from the hose???? I have a fleece cover but it doesn't make enough of a diff some nights. I've read that buying some thinsulate material and sowing your own hose cover is as effective as buying a heated hose. :wave: Terry

[Dazed1]

Flower51, by rainout I assume you mean leakage from the hose. This only happens to me if I overfill the water tank. Your husband should try the cooler room and I think he will like CPAP a lot better, and sleep a whole lot better. I find the cooler the better for CPAP. My CPAP is ResMed, and I have been very satisfied with it.

[Flower51]

LOL its not my dh that has the cpap, its me! The rainout is caused by the diff in temp between the water in the humidifier and the room's air temp. I haven't read anywhere that its a matter of how much water is in the humidifier itself. I got mine in summer and not knowing any better as a newbie, turned the heat on the humidifier. As a result with the hot summer temps and the natural humdity in the air, I started growing mildew on our painted walls next to my side of the bed!!!!!!!!!!!! When I realized the problem, I cleaned the walls thoroughly and didn't use the humidifier in the already "humidified" by summer heat and moisture, room.

No problems since! Terry :wave:

[Dazed1]

Flower51, I have never encountered that problem and I have the heated humidifier. Now if I overfill the water tank it will blow water into the tube. I use the heat on the humidifier all year long with no rainout.

[nawchem]

I have been on cpap for a 1-1/2 years and it saved my life and sanity. I had a problem with feeling suffocated, couldn't stand the ramp, at night I would take off the mask in my sleep. My dr adjusted my pressure slightly higher and I don't feel air deprived anymore. I have also noticed I feel breathless if I eat too much before bed or too many carbs!

I think 3 hours a night isn't bad for starting out. As he works out all the bugs he can increase it. I love the heated humidifier, I have a hose cover that is electric so it keeps the vapor in the hose vaporized. I had a bad condensation problem in my mask.

The first night I used the cpap I woke up in the morning disoriented from sleeping so hard. And I'm not in a terrible mood in the morning anymore. It is a great, great thing. When I use it all the time my blood pressure goes down - extra bonus!

I have read it is most important to wear it in the early morning hours, that is when you sleep more deeply and that's the restorative sleep. I don't technically have apnea though so maybe a different case for your husband.