Update on husband

[reginaalear]

I'm really worried about my husband's mental state with using the cpap. He didn't wear it last night because he said his nose was to stopped up and he uses the nasal pillow. He told me it gives him really bad headaches, nightmares, & makes his want to cry and rip it off. He was almost in tears last night but is to much of a tough guy to cry around me. He was hurt at work about 3 years ago and put on about 60 lbs. I think he thinks he let himself get sleep apnea by gaining weight. I tired to explain to him that even people not overweight can get it, but he doesn't believe it. I could tell a difference yesterday with using the cpap and wish he would wear it. He said he's going to get the mask that covers the mouth and nose, but when he did his sleep study he was so closterphobic he couldn't wear that one. I've really tried to get him to get on here because I know that you all know what he's going through. I've tried to be very supportive but he says you don't know what it's like. I even wore it to show him but he didn't care because it didn't bother me. One question though is it normal for some air to come out it where the clear part meets the mask? Thanks so much to you all for being here for me because I don't know what to do right now. I don't see it as being that big of a deal, but obviousally my husband does.

[reginaalear]

I tried to add my husbands machine, but it doesn't have it listed. It's a REMstar Pro C-flex+ His mask is Zest nasal mask.

[Pugsy]

So sorry your husband is having so much trouble adjusting. I wish I had some magic words to help him get his head around all this.

As far as the air coming out the mask area. Yes. There are vent holes. There is normal venting of the air to expel our own exhaled breath. Otherwise there could be a build up of carbon dioxide and some rebreathing of it which is not good for the body.

Regarding his machine...take a look at my machine in my link and I bet his machine will visually look like mine. (all PR S1 models look alike at a glance)
In the drop drown equipment list look for PR System One Remstar Pro with CFlex.
You don't see the PR System One wording on the machine only the Remstar part.

[NYcpap]

On the air leakage you are observing. The mask does have small openings for air to escape. This is normal. As long as the mask is maintaining a good seal where it meets the face, it is ok. I find the nasal mask to cause congestion in my sinus's. I've tried several. Your husband may want to try a nasal pillow. I find the Swift FX very comfortable.

[Gaga58]

Regina...check my machine listing as your husband's machine is the same one I use! I do wish he would get on the forum, although I am not a "guy"...I am a very small person, so I seriously do not think weight has anything to do with this! I'm 5' nothing...115 lbs!! And up until last year I didn't weigh that much!! I can't speak to weight gain as being a problem, but I'm sure others on here can. It sounds more that he's having a hard time with the psychological part of it...he reminds me of my husband! He broke his ankle a few years ago falling out of a tree...had to have a cast put on...I thought the man was going to go into raving hysterics right in the doctor's office!! Totally shocked me to death as he's one of those who gets hurt and keeps right on going, but there was something about the constriction of the cast that just blew him away. He came home and literally took a saws all to the cast and cut it off!!!!!!! I STILL do not see what the big deal was, but he did!! Hang in there!!

[JointPain]

I'm very sorry that your husband is having such a hard time.

He didn't wear it last night because he said his nose was to stopped up and he uses the nasal pillow.

I use pillows and make sure I clean the nostrils out before bed. If still stopped up I use a Vicks inhaler for a few moments. Once the CPAP is on and going they usually stay clear. I might even put the open inhaler close to the intake valve of the machine for 10 seconds or so when starting up. Probably none of that will help if I actually have a head cold though.

He told me it gives him really bad headaches, nightmares, & makes his want to cry and rip it off.

In the beginning, wanting to rip the mask off is a pretty normal reaction. He has never slept all trussed up like that before. A lucky few don't seem to notice the difference, but for many people adjusting to CPAP can be very hard.

If he does need to get the mask off, just calmly take it off, take a few moments to calm down, and when he's ready put it on again. Just try not to sleep with it off.

It can help to just use the CPAP during the middle of the day (well, not at bedtime) while watching TV or something similar.

The headaches are much more of a concern. He shouldn't get headaches just from wearing it while awake, which is what I got the impression you said in the earlier thread. I'm not familiar with the Zest nasal mask, but I googled it and the one I found was a nasal mask (triangular shaped cushion that fits over the whole nose). Pillows are very small pair of nozzle-like things that just sit on the ends of your nostrils. Anyway, both types rely on air pressure to inflate them and make a seal. Start with them very loose and once the CPAP gets up to his treatment pressure, tighten them just enough to get a seal and see if that helps with the headaches (while awake watching TV).

I think he thinks he let himself get sleep apnea by gaining weight. I tired to explain to him that even people not overweight can get it, but he doesn't believe it.

Most likely it's just a matter of getting older. Perhaps he gained some weight and that may have made him get it a little earlier than otherwise, but he sure didn't go out and get it deliberately. Another very realistic possibility is that he gained the weight after his apnea developed but before he was diagnosed. Because you're so exhausted all the time with untreated apnea, you don't have the energy to exercise much, and your body is just idling along at minimal when you're not exercising so it's very easy to gain weight, and very, very hard to lose it.

But how he got apnea is not important now. He's very lucky that he's been diagnosed and has the treatment system that he needs to halt and hopefully reverse the damage that sleep apnea is doing to his body, before it leads to something truly nasty, like a heart attack or stroke. That is something he does have control over, and it just takes using the CPAP.

One question though is it normal for some air to come out it where the clear part meets the mask?

That's probably the vent. The mask has to release the air you've exhaled or you'd be breathing in your own CO2 all night, so the vent is designed to let that out and of course a lot of the air from the machine goes out there too. It's called the intentional leak and is perfectly normal. We spend ages discussing ways to minimize the noise it makes and to make sure it doesn't blow on us or our partners.

[jcurt172]

Regina, I'm 5'10" and 160 lbs which means weight did not play any part in my sleep apnea. I also experience frequent congestion and need to wear a full face mask. Consequently I can relate to his feeling of claustrophobia and have experienced it on several occasions particularly when one of my nostrils is plugged. I can't emphasize enough the value of wearing the mask in the evening when watching television, reading etc. In my case it took many, many hours of wear to get used to the mask and, after 5 weeks, I still have a problem once in a while but......it's has gotten MUCH better. This may sound silly but I think there's a large element of trust that goes in to this break-in period. In the beginning it may seem, maybe unconsciously, that the machine, hose and mask are overwhelming and stealing your breath instead of giving it. I think it's a primitive and basic instinct to protect your ability to breath and difficult to learn to trust that the machine and mask are there to help you, to deliver a smooth, humidified stream of air that is essential to your health. If you read many of the posts from people who have been cpap users for several years you will see that their cpap equipment has, long ago, made the transition from unwanted bedroom intruder to trusted friend.

[reginaalear]

The nasal mask he wears is the one that covers just the nose area. I really hope he can get used to wearing the machine because his blood pressure is in stage 2 hypertension and they can't get it down with meds. His cholesterol is Very high also. He's only 37 years old and is unable to do a lot of exercise due to injurying his back at work. I'm hoping that this will help lower his bloodpressure and hopefully help with his memory loss that he has. I have been trying to encourage him to get on the forum. The air that leaks out isn't from the vent holes in the mask it's the actual Seal area on the hard plastic tube part. I figure it probably is normal but wasn't sure. Thanks for all the helpful information. I'm not sure how to post it for sure, but this is the Link to the mask he has.
http://www.google.com/products/catalog? ... CF8Q8wIwAA#

[DaveL]

Many here have more experience with masks than I. I've had cpap for 13 years, and people were critical and blamed my weight. Well I've lost 33 lbs and I still have sleep apnea.
My mask worked better after I started using cpap wipes that I bought from my DME. Discovered them--they didn't say they had them. Maybe like baby wipes, but I don't know.
I wipe the part of the mask that sits next to my face with a cpap wipe and the mask seals and works so much better. And it's so easy!
Works better for me than soap and water, and allowing the mask to dry so I can wear it again.

Hope this helps.

Also--my DME has no skill. So picking a mask is an ordeal. Mask reviews here and elsewhere have helped me a lot.

Good luck; wish you and your husband success, and health & happiness. OSA affects 2 in a marriage. Even if only 1 is diagnosed.

Best,
DaveL
Toronto

[Perrybucsdad]

I have not had experience with the pillows yet, but I have a full face mask. I have had a cold the last two days and last night my nasal passages were running and all clogged up when I went to bed. I was really worried on how I would cope with the mask as this was only my third night.

I had posted this earlier in the evening and some kind souls told me that the mask with he humidity will actually help, and it did. About 30 minutes after placing the mask on, my nose had stopped running and I could breath through my nose a whole lot better.

So, yes, it's tough, but you have to help him keep up with it. Have him practice sitting on the couch watching TV or what not so he can try and get comfortable.

The who headache thing I don't get. Is the headgear too tight possibly? Maybe someone who is more knowledgeable than I could comment. I know if we re-breath our CO2 it can cause headache's but there is a valve on the mask that should be venting that. Does he sleep strange (with a pillow over his face or under the covers) and maybe this could be causing some of it? Or something is plugging the vest holes?

- John

[JDS74]

... He said he's going to get the mask that covers the mouth and nose, but when he did his sleep study he was so closterphobic he couldn't wear that one. ...

I, too am severly claustrophobic and had so much difficulty with a full face mask when I was diagnosed 11 years ago that I just didn't even try. My second sleep study was done last October and the apnea was very much worse.

By chance, I found the Oracle 2 oral mask made by Fisher-Paykel. It is an appliance that just fits into the mouth like a scuba mouth piece. It has a strap that goes straight back around the neck but I never wear it.

That's me wearing it in the pix in the upper corner. Your husband will need to wear the nose plugs for a while until he gets used to not breathing through his nose at night. Even that need goes away after awhile.

Please read my post on my experiences with this mask. Some folks can't tolerate it or don't like it for personal reasons but for us claustrophobes, it is a life giver.

Oracle 2 Oral Mask Lessons Learned in 10 months of usage
viewtopic.php?f=1&t=63139&p=589683&hili ... le#p589683

[ThirdOutOfFive]

I'm sorry that your husband is having such a hard time, but I am not surprised. It is unnatural to sleep with a headpiece, mask and tubing. It is unnatural to sleep with air being pushed down your nose. Then you add in the issues of types of masks, humidity, hose management, etc. Yikes!

Tell your husband that it takes time to get everything right. Start with one thing and work on it until that is right. I recommend starting with the mask. Most DME's will let you try other masks during the first 30 days. I started with the nasal pillow type, but was having trouble with fit and with it becoming dislodged when I turned over. So, I made an appointment with my DME (I pronounce that as "dummy") and got a nasal mask (the triangle kind that covers the nose. It is much more intimidating looking, but I like it better. It fits better; the nasal pillow was a problem because my nostrils are not the same size.

Now I am working on hose management-- how not to pull my PAPpy off the nightstand when I wrap the hose around my body.

If you find a post on here that you think would resonate with your husband, I would suggest that you print it out and leave it somewhere that he can see it. I know that, if I were trying to talk huby into coming on this site, he would resist like crazy. My hubby needs to think that it is HIS idea.

Good luck to you and your husband. He will benefit greatly from this therapy, but he has to work at it.

[kteague]

Just a few thoughts...

The nasal mask I tried to use caused a pressure sore on the side of the bridge of my nose, and it was so tight or else misfit that it blocked my sinuses and caused congestion and made me miserable. Just saying, having a mask actually cause congestion is not unheard of.

Also, with the experience he's having so far, I'd wonder if his pressure is therapeutic. One question - is he almost immediately feeling those discomnforts? I had a problem at first with using the ramp feature. It was set at 4 for at least a half hour (maybe 45 mins can't remember), and this started my whole night off on a bad note. If I did fall asleep I'd have nightmares and snatch the mask off feeling like I was soffocating. When I came here it was suggested I increase my ramp pressure and shorten the ramp time. That was the beginning of me seeing a light at the end of this tunnel - made a world of difference.

As far as masks, if he still has the various ones, maybe he shouldn't rule them out for trying again later. I have revisited a mask before and found it not nearly so aggravating. Keep in mind that what's a big deal for a rested person is much different for a sleep deprived person whose every nerve is on edge and is emotionally strained from fighting through every night and day. You can't feel what he's feeling, though it's noble that you are trying. I had a friend once who said to me about something she was going through, "I don't need you to understand. I need you to believe me." Just continue to let him know you're there for him and believe he will be able to work through this to a satisfactory end. I didn't always believe I could make this work, but I did believe those who'd done this before me who said I could. Give him our words of support.

[Mr Bill]

Well, I'll just quote my sleep doctor who gave our sleep apnea group this handy diagnostic aid:
S. if you have (S)noring while sleeping
T. if you experience daytime (T)iredness
O. someone (O)bserves you not breathing while sleeping
P. high blood (P)ressure, resistant to drugs
He said, if you have any two of these symptoms, you are more than 50% likely to have sleep apnea.

I think most of us are in agreement that sleep apnea causes weight gain and not necessarily vis versa.

I had a terrible time getting acclimated to my nasal mask. I had to sleep with the light on for many nights. As others have said, it helps to sit and read while masked up with the blower on. I think it takes our sub conscious mind a few weeks or months to make an accommodation with the mask and blower. So, its natural to freak out a bit when the mask first goes on. It took me 3-4 months to get over my personal magic number of 4.5 hours of machine sleep per night. Every now and then I have one of those days, its sort of like a migrain or an asthma attack (I have asthma). You get this feeling as you are getting ready for bed that things are going to be difficult. Sure enough, the mask seems extra constrictive to the point that I rip it back off after only a short time. I seem to have a problem with humidity and inflammation. If its too humid, I have just enough restriction breathing that masking up becomes a big trial.

OK that said, if you do a search, somebody recently posted that its typical for one nostril to be closed and the other open. We don't typically notice this during the day but masking up makes us aware. So, if you can breath normally without your mouth open unmasked, you will be OK masked. Here is the routine I follow...
I get my machine connected to the hose but do not connect the hose to the mask. I lay in bed and read or relax till I am close to sleeping. Then I put on the mask. If I can breath OK for a minute or two then that is the test that tells you, you are calm enough to turn on your machine. Turn it on, and when the air flow starts, connect the mask. Then try to sleep. Or as I do, continue to read for a few minutes then give up and fall asleep.

A few hints that I have learned from others on the board(in no particular order).

First: My machine likes to get me breathing ~18 breaths per minute, far more than I breath when awake. So, I start breathing shallower and faster to match myself to what the machine will eventually get me to.

Second: a mask too tight makes you claustrophobic and it presses on your sinuses making the sensation of suffocation worse. Try getting the mask as loose as you possibly can. Its the pressure inflating the inner silicon that makes the seal, not the strap around your head. The strap on the head is just to keep it in the right place.

Third: the smaller masks seal better and can therefore be looser, and feel less claustrophobic. I found this out for myself.

Fourth: I notice on my nasal mask that slipping it downward so it seals against my lips just above my teeth makes me feel like I breath more freely because it makes a little pocket of space under the nostrils.

Fifth: Find out if humidity helps or hinders. I have my air flowing over the water but unheated. Higher humidity stuffs me up. Others find that higher humidity clears their sinuses.

Sixth: Nasal masks that have a bridge to support against your forehead press there instead of on your sinuses (look at the picture of mine). By adjusting the straps, you can keep pressure off the area around your nose.

Seventh: Rinse or wash your face and then towel it vigorously before turning in. This excess of sensation will reduce the tendency to suddenly have an itch under your mask.

That's all I can think of at the moment. Tell your hubby that his blood pressure will probably fall quite a bit once he gets over 4-5 hours a night of sleep with therapy. Mine held steady (high) till I hit the magic number (for me) of 6-7 hours a night. Then it fell quite dramatically and has stayed down as long as I keep getting that 6-7 hours of sleep a night.

[robysue]

I'm really worried about my husband's mental state with using the cpap. He didn't wear it last night because he said his nose was to stopped up and he uses the nasal pillow. He told me it gives him really bad headaches, nightmares, & makes his want to cry and rip it off. He was almost in tears last night but is to much of a tough guy to cry around me. (emphasis added)

Been there and done that with the tears. And screaming and yelling at the top of my lungs in the middle of the night. And throwing the mask across the room with enough violence to tear up the small hose. (Fortunately I had a back up small hose).

The thing about having a hard time adjusting to the mask is that you feel utterly alone---as if no-one on the face of the earth really knows what you're going through when it's 3:00 AM and you still have not been able to settle down enough to get into a decent sleep. And the deepest despair occurs in your very own bed---a place that was so recently a refuge from the outside world which has now become a land occupied by a foreign invader called the CPAP machine.

Even if you are participating actively in a forum like cpaptalk, it's hard enough to remember others have gone through what you're experiencing and managed to (finally) get things working to the point where they can't imagine going to sleep without the mask on. And if you don't have a patient support group of some sort---be it on-line or in-person, that sense of isolation can be overwhelming every single night, all night long, even in the (formerly friendly) confines of your own bed with your dearly beloved life partner in the bed next to you.

But the sad fact remains that as long as he's finding excuses to NOT wear the mask at night, he's seriously increasing his chances of abandoning therapy altogether. And if he doesn't give up, he's making the adjustment more difficult and much more lengthy. And, in my humble opinion "a stuffy nose" is just an excuse. First, he needs to learn something about nasal hygiene and how to manage the congestion. For most people, an appropriate use of some combination of saline nasal sprays, neti pots, OTC antihistamines, and prescription nasal steroid sprays will keep the nose clear enough to comfortably use the CPAP machine. See my blog entry, Nasal congestion and problems with cpap for a fuller description of my tips for this problem as well as two important links to information put together by Dr. Barry Krakow and Dr. Sy Park about this issue. Finally, for me, the pressurized air usually helps clear the last bit of congestion that my nasal hygiene doesn't seem to completely deal with.

Headaches are likely caused by a combination of the headgear straps being too tight; the nasal pillows not being seated against the outside of the nostrils; sensory overload from the pressurized air (this will get better in time if hubby uses the mask); fragmented sleep, which is common during adjustment since there's a pretty steep learning curve for some of us; excessive worry and feeling guilty about the whole OSA diagnosis (and yes, some of us do feel guilty that we got this disease at least at the start); and a reluctance to move around in bed for fear of triggering a leak or pulling the machine off the table.

Nightmares? Well on night three I had a vivid dream that I was an intelligent goose being forced to breathe in more and more and more air to the point where I knew my lungs were going to burst---all because I was being "fattened" up for some kind of perverse version of foie gras. And I knew that was to be my fate: I'd wind up on some rich person's plate in a fine French restaurant and all my agony would give them 10 or 15 minutes of pleasure while they were consuming my overstuffed innards. Really weird and really disturbing at the same time.

My guess is that the nightmares are likely being triggered by the newness of it all and the (unconscious) awareness that regardless of whether he manages to stick with CPAP, the OSA is for life and there's a bit of confronting your own mortality that some of us have to go through. And once his body, mind (both conscious and unconscious), and soul get to where they all accept the presence of the CPAP machine in his life as at least a "neutral" object, then the nightmares will likely abate.

He was hurt at work about 3 years ago and put on about 60 lbs. I think he thinks he let himself get sleep apnea by gaining weight. I tired to explain to him that even people not overweight can get it, but he doesn't believe it.

Guilt is a strange beast. We often blame ourselves for things we think we could have done something about which were largely out of our control and refuse to accept responsibility for things we do control and have done wrong. I suspect your hubby's blaming the OSA on the weight gain is partly guilt, partly grieving, and partly a bit of denial---I bet he has a secrete hope that somehow things would be able to get back to "normal" if only he could shed those 60 pounds and, at the same time, a profound fear that things won't improve at all if he did manage to shed those 60 pounds.

I'm a 5'1'' 53 year old woman who has weighed between 103 and 113 pounds for my entire adult life except for when I was 6-9 months pregnant. So clearly weight was not a factor in my developing OSA. And yet I went through a great deal of anger, angst, and guilt in the first several months after being diagnosed. Intellectutually I understood that I was not morally responsible in any way for developing OSA, but I still felt as though it was my fault in some way. I also felt very much like a freak, which did nothing to improve my mood. There's a grieving process that some of us must go through to accept this diagnosis. So try to be supportive of your husband emotionally as he works through his guilt, grief, and denial.

I could tell a difference yesterday with using the cpap and wish he would wear it. He said he's going to get the mask that covers the mouth and nose, but when he did his sleep study he was so closterphobic he couldn't wear that one. I've really tried to get him to get on here because I know that you all know what he's going through. I've tried to be very supportive but he says you don't know what it's like.

The very next time he tells you that you don't know what it's like, tell him that you know you don't know what it's like. And that he needs to talk to people who do know what it's like. And that if/since there's no in-person support group that his doc can refer him to, he really needs to come here. And tell him we won't bite.