Janet, I see you've mentioned that your husband has the OptiLife mask. I'm not familiar w/it. I've heard of it but have no experience w/it nor have I looked at a picture of one.

However, you haven't mentioned which CPAP machine he is using. If you look on the top the full name and model should be obvious. Maybe knowing which machine he's using will enable someone in the forum to offer a few more specific tips.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

It's a Remstar Pro with heated humidifier.  He's at level 7.  Here's a website with a great picture of it.  The guy is even side-sleeping, just like my husband.  [Commecial link deleted.  Please review posting guidelines]  My husband it quite comfortable with it and doesn't seem to mind wearing it, we are just concerned about the air not getting into the one side of his nose because it's blocked.  He has to mouth breathe during the day because he can't get much air through his nose.

Hi,
 
I'm a bit confused. The Optilife seems to be a nose mask, but your husband is a mouth breather? I guess the chin strap could keep his mouth closed a lot, and the extra pressure of the air in his nose would be helping him breath, but maybe a full face mask would help?
The ResMed Liberty or Respironics Hybrid are two newish masks that combine a mouth mask and nasal pillows.
 
I've got a liberty (confirmed mouth breather, my nasal passages close up when I breathe in), and I can side sleep, even tummy sleep with it just fine.
 
The hard shell full face masks didn't work for me because of too much leakage and very uncomfortable (almost impossible) when sleeping on my side/face.
 
Just a thought....
 
As to sleeping on his back. My first sleep techie told me "You must sleep on your back" - not gonna happen! The next sleep techie told me to sleep however I was comfortable, that it was my sleep, and they'd find a mask that worked for the way I slept.

Janet -

A few comments:

1.  The biggest mistake I made in this process was not putting myself under the care of a certified sleep specialist at the very beginning.  I let my process be managed by my GP and then by an ENT, both of whom were competent in their fields, but neither of which was up to speed on the nuances of interpreting the data, the various equipment choices, the latest developments in the field, etc.  I was sent to a sleep center that did not have the most up to date equipment, and after my study my data were sent to a random "sleep doctor" for interpretation, then back to my GP/EMT for communication to me.  I quickly figured out that this process was broken and wasn't going to fix my 120 plus events per hour.  I found a highly credentialed sleep doctor and went to him directly.  That should be the first course of action for anyone because to do otherwise is just to invite frustration.  The process can be frustrating enough (I've been at it for over a year and still not done) without imposing other obstacles - especially ones that can prove to be insurmountable.

2.  If your husband can't breathe through his nose then, obviously, a nose mask or nasal pillows aren't going to work for him.  He either needs to fix the problem that is preventing him from breathing through his nose, or he needs a full face mask or a hybrid system.  I have a deviated septum and bad allergies.  I was using nasal pillows, then went to a nasal mask, then went back to nasal pillows, because I was still experiencing fatigue.  Follow up study found that I was opening my mouth during sleep.  Now, I need to go to a full face mask.  Either that or a chin strap may be necessary for your husband.

3.  I use two prescription allergy medicines daily - a pill and a nasal steroid.  I would have no hope of breathing at all through my nose without these.  Your husband may benefit from a nasal steroid.  He should ask his ENT or GP.

4.  Bottom line is that his data are hard to understand which makes me suspicious of the study itself.  The sleep centers I have gone to generally are staffed by well meaning people, but I have found wildly varying levels of competence.  I don't intend for that to sound mean - it is just the truth, and if you gain the confidence of a really good sleep doctor they will absolutely confirm this.

5.  There are several conditions, other than just apnea, that trouble people during their sleep.  Many people have a combination of these.  Your husband may be one of those people.  Only a competent sleep doctor will be able to diagnose this and prescribe the appropriate treatment.  It is important to remain calm and patient throughout this process.  Impatient people get frustrated and quit treatment, living the rest of their lives with a problem that affects their quality of life and reduces their life span every day.  This stuff isn't as simple as putting on a mask, throwing a switch and *presto* instant cure.  Well, for some lucky people it is, but for many it isn't.  For many people, the process involves a lot of trial, and a lot of error but, we hope, eventual success.

EXCELLENT advice, Zolitor!!!


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I agree with your posts entirely.  Unfortunately, I think we didn't go to a great sleep center, but insurance probably won't pay for us to go to another, so we had a lesson learned there.  My husband has started on a full face mask, but still didn't feel like he was getting enough air.  He couldn't use the ramp feature without taking the mask off to get a breath.  I called his indecisive doc and asked if he could write a rx to increase the air, so he put my husband on a A-Pap for a week.  The first couple of nights he didn't sleep very good, but the last two have been MUCH better.  I'm dying to see the results.  We're going to keep the A-pap for two weeks and try one week with the full face mask and one week with the Optilife (nose pillow) just to see the difference.  I told the guy we're renting the machine from that we wanted to do this and he said it was fine with him.   (I didn't ask the doc, because I don't want him to say NO.)  The A-Pap machine seems LOUD, but it may be that we're hearing more air.  This is part of why my husband didn't sleep well the first couple of nights.  The first night, the mask was leaking a lot.  I think it took a while for my husband to adjust the mask to the increased air.  The A-Pap is a Rem-star, which is the same as the C-Pap.  Are these known for being loud?

The director from the sleep lab has never done a complete review of our results as she had promised, so I'm disappointed in her and the whole program.  They are all really NICE, but nice doesn't necessarily mean competant.  

My husband is on a rx nasal spray.  It seems to help for part of the night.  We have an appointment with the ENT at the end of October.

I'm still wondering about the notes the tech made about the leg movements.  I watched my husband kick the other night when he first fell asleep.  Even his hands completely opened and closed.  

We may dump his doctor, but not until we get the results of the A-pap.  He isn't sleep certified, and I'm really unimpressed with him.

My husband did the A-PAP for two weeks and we are now awaiting the results.  He got a full face mask (per the docs request) which was fairly comfortable (but did end up leaving a red, irritated, gouge above his nose), but it would leak a lot when he moved, and HE SNORED WITH IT.  I'm so disappointed.  The last threes night my husband has slept without anything and we BOTH felt MUCH more rested than we have the last eight weeks on the machine.  The machine itself (Remstar Pro) has been really loud, plus all the times he wakes (and ME) to adjust the masks when he moves and air leaks out.   I don't think we've slept well since he started.  He hasn't snored much now without the machine.  Have other people experienced loud noise from the Remstar?  I think my vaccuum cleaner is quieter.  It seems to start quiet and get louder the longer you have it on.  By morning, it's ridiculous.   I can certainly see why so few people stay with the machine.    Does anyone have any advice?  We've pretty much given up.

I can empathize with the last thread and those preceeding it. I found myself in a very desperate situtuation too - for me cost was not a consideration because I thought I was going to die! I have sleep apnea and was CPAP intolerant. Having been a paramedic for eight years prior I understand quite a bit about the airway and breathing but just could not acclimate myself to the CPAP. After a few terrifying episodes in the night I knew I had to find an alternative. It was then I met Dr. Jonathan Greenburg in Valencia, California. I had not compared different devices and thought that at the time that CPAP was the only thing out there. Fortunetely, Dr. Greenburg's device has been a Godsend. I too was told that my device would be covered 50% by insurance and they were right. The important thing though was that I had less than 10 minutes of actual "face time" with my original sleep doctor, a CPAP that was ineffective, night episodes that had me fearing for my life, and a family to raise - I was in real trouble. Dr. Greenburg and his staff spent an extraordinary amount of time and testing on me. I immediatly realized I was in the hands of professionals. Interestingly, I also have some TMJ issues including a jaw click when I yawn. The Full-Breath Solution doesn't seem to affect it. I've been using it for about one year now and I am completely convinced that it has saved my life.

Yes, I am a real person and this really is my story. I would be happy to talk to any one of you if you want to know more so let me pass this info on to you: I have been invited to participate in a teleconference this Wednesday, November 7th 2007, at 7pm. I will be sharing my experience and I have been assured that those who sign up for the call will be able to submit their individual questions and address them to me or to Dr. Greenburg. At the risk of sounding too much like a commercial, all I can say is that I know there are many of you out there like me who are desperate for a solution. I am extremely grateful to have found one. <link removed>

Again, I am not knocking the CPAP because apparently it is effective for many people. It just didn't work for me. You may not be in such a critical situation like I was. Still, if you care about your health or the well being of those you love, you owe it to yourself to at least get the basic info about any new advancements. Like the previous poster said, there's not a lot of info out there.

<link removed>

One last thing, I'm interested in getting some feedback after the tele-seminar. I've never had the opportunity to give my testimonial in this fashion and I'd like to know that all interested participants get their questions and concerns answered. My name is Jon and I can be reached at fastracker@roadrunner.com  I hope this info is helpful.

I have been reading so many postings, and I am beginning to feel like a freak.  Only Janet K seems to even refer to the anxiety I feel every time I see that repulsive mask.  It looks like a cross between martian and Silence of the Lambs, and that's the smaller one!  The first one they said was only a partial face mask, which was a joke when only a small bit of forehead showed.   It's llike he has a vacuum cleaner stuck up his nose...I guess it is a good thing it's not me because I would never in a million years wear it; I would give up.
I have chatted w/ some on the main forum who tried to be helpful, but I know I sound like a shallow person to them.  The could tell I'm sleep deprived myself, as I admit, but the noise of the machine is enough to drive me up the wall.   So now I've bought an Ipod and earphone to try to tune out the very person I love.   That doesn't sit well with me at all.
There have been nothing but problems; I do not see my husband feeling any better while dealing w/ congestion, nosebleeds, headaches, and discomfort.  I despise this machine that not only isn't helping, but robs our marriage of the intimacy we at least had in bed.  I hate having his back turned to me all night.
  I keep telling myself I should be happy he's alive, that someday he may feel well enough to stay up past 7:30 p.m., but so far I only feel guilt at my reaction to the hideous thing and try to avoid seeing it if at all possible.  Even catching a glimpse of all those straps from the back of his head turns my stomach.  I can't imagine enjoying intimacy even months down the line in a bed I associate w/ such a negative.      
   I am going to counseling, as I have for the months since  his heart disease escalated to new levels,  recited positive mantras, bought new books and distractions, but now I 'm getting to the point of thinking it doesn't do any good to even talk about it.  I'm so tired, physically but especially mentally.  I have never hated anything in my life as much as I hate this machine and the disease it's supposed to treat.   It's archaic.

Everything that you have posted sounded like me.  I couldn't use CPAP because of such a high pressure needed.  I tried all types of masks, nose devices, chin straps, etc.  I even bought a ridiculous thing that is like a suction cup that you attach to your tongue and it pulls your tongue out away from your throat.  Sort of like sticking your tongue way out at somebody!!!  My wife thought it looked ridiculous as did I.  Eventually, my blood pressure got so high at night and my heart pounding that I started having seizures.  After the 4th seizure and ENT doctor suggested that I have a trach put in my throat to help me breath better.  He said it wouldn't be permanent and when I lost enough weight to correct O.H.S. he would take it out.  This is what I think your husband might have.  O.H.S. is Obesity Hypoventilation Syndrome.  Your husband may not be obese like I am/was but he still might have a hypoventilation problem.  This is a situation where your lungs don't remove all the carbon dioxide out your system and that in turn lowers your arterial blood gas oxygen level so low that it makes you exhausted, fatigued and really sick.  Now, the little thing they put on your finger, pulse oximeter, always showed that I was 90-95% oxygen level, but my arterial blood gas showed 56%!!!  I am in the process of losing my weight, 95 pounds so far and may have to temporarily go on a ventilator to sleep at night until I lose enough weight to correct everything.  I can't wait because then I can get this trach out of my throat and maybe my sleep will return to normal.  After getting the trach though my blood pressure went from a high of 160/100 (middle of the night reading) to now a great reading of 115/70 with a heart rate of 70 down from a high of 125 beats per minute!!!  Please ask the doctor about hypoventilation syndrome or look it up on the internet.  Also, the pulmologist should do a arterial blood gas reading to see what is up with that. Email me with any questions or pm me.  jeaukool  

upset spouse wrote:

I have been reading so many postings, and I am beginning to feel like a freak.  Only Janet K seems to even refer to the anxiety I feel every time I see that repulsive mask.  It looks like a cross between martian and Silence of the Lambs, and that's the smaller one!  The first one they said was only a partial face mask, which was a joke when only a small bit of forehead showed.   It's llike he has a vacuum cleaner stuck up his nose...I guess it is a good thing it's not me because I would never in a million years wear it; I would give up.
I have chatted w/ some on the main forum who tried to be helpful, but I know I sound like a shallow person to them.  The could tell I'm sleep deprived myself, as I admit, but the noise of the machine is enough to drive me up the wall.   So now I've bought an Ipod and earphone to try to tune out the very person I love.   That doesn't sit well with me at all.
There have been nothing but problems; I do not see my husband feeling any better while dealing w/ congestion, nosebleeds, headaches, and discomfort.  I despise this machine that not only isn't helping, but robs our marriage of the intimacy we at least had in bed.  I hate having his back turned to me all night.
  I keep telling myself I should be happy he's alive, that someday he may feel well enough to stay up past 7:30 p.m., but so far I only feel guilt at my reaction to the hideous thing and try to avoid seeing it if at all possible.  Even catching a glimpse of all those straps from the back of his head turns my stomach.  I can't imagine enjoying intimacy even months down the line in a bed I associate w/ such a negative.      
   I am going to counseling, as I have for the months since  his heart disease escalated to new levels,  recited positive mantras, bought new books and distractions, but now I 'm getting to the point of thinking it doesn't do any good to even talk about it.  I'm so tired, physically but especially mentally.  I have never hated anything in my life as much as I hate this machine and the disease it's supposed to treat.   It's archaic.

I'm glad you are going to counseling. You need it w/all you are going thru and the worry about your husband's health. The first thing you need to do is get him back to that sleep doctor. Meanwhile, off to the DME supplier w/your & his list of complaints about the equipment so far. Today's xPAPs are not noisy, especially not to the level you refer to, so ask to exchange to another brand and model xPAP to see if the individual device he has is defective. The headaches, congestion and nosebleeds need to be addressed.

Look on the top of his machine and tell us what brand and model he has. Also tell us the name of each mask he has tried and which he is using now. What is his pressure setting? With that information we can be a lot more help.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I just returned from the counselor again, and I feel as if I've entered yet another stage in this nightmare.  The counselor feels that my strong anxiety stemming from the years my father was debilitated have precipated this horrid association.  He doesn't think it can be overcome, and that I will need to move to another bedroom.   I feel as if a part of me has died.
I can't even bear to look at the vacuum cleaner hose, repulsive mask & equipment, and I start shaking when I know he's putting it on. I can't bring myself to check to tell you any model info.  He seems to think he's adjusting to the the thing better, but his symptoms are no better whatsoever from my angle.  His legs are still swollen like tree trunks. He still falls asleep at 7:30 or 8:00 at night.   Worst of all, now his whole body jerks worse than ever with almost every breath.  That has gotten so much worse lately. He called the dr. today who just said that unfortunately that "just happens" in some people.  He's sending him back to the cardiologist about the leg swelling.  Thanks a lot.  No spouse could sleep with the constant jerks of the bed.  I am moving beyond sleep deprivation to total depression.  I am having to face the very thing I have feared my whole life in moving to separate beds.  

I hate this machine/disease/invasion in my marriage more than I can say.  Thank you for letting me vent.

Upset,

He is most likely jerking more now because he probably has Periodic Limb Movement Disorder (PLMD) in addition to OSA.

There are two main kinds of limb movement during sleep.  During an apneic event, there is limb movement due to futile attempts to breath.  As apnea is compensated with the use of CPAP, the effort to breath is eliminated and the limb movement decreases.

PLMD is the sleeping cousin to the awake Restless Legs Syndrome (RLS) and these are both neurological disorders.  There is a circadian cycle to RLS/PLMD which is why the symptoms of RLS are worse at night.  Not all people with RLS have PLMD and visa versa.  You can have one and not the other.  I happen to have both.  With RLS/PLMD, the calmer the body is, the worse the symptoms are.  Since these are neurological disorders they must be treated with medication.  The common first line drugs of choice are low dose anti-Parkinson’s drugs such as Requip or Mirapex.  Second line drugs are benzodiazepines such as Klonopin, but these drugs are addictive.  Additionally, anemia exacerbates PLMD/RLS so your husband needs to be checked for that.

As you noted, PLMD is itself very disruptive to sleep.  In my case, I was first treated for OSA and a few years later, when I started becoming fatigued again, a sleep study showed PLMD.  I had known quite awhile I had RLS since that is a conscious disorder.

A sleep study with CPAP rules out whether the limb movement is due to the effort to breath or PLMD.  Not only does CPAP eliminate the movement if it is effort related, but this movement is always linked to an apneic event whereas PLMD is random movement.  Your husband needs to be reevaluated for PLMD.

Your husband needs a better sleep doctor (one acredited by the American Board of Sleep Medicine, www.absm.org) and you need a better therapist.  What a crock for him to tell you that your anxiety cannot be overcome.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Jeaukool,

I found your description interesting.  After my sleep study my doc said I needed a bipap for several reasons, including hypoventilation, and I was given supplemental oxygen.  I really don't understand it.  All I know is that the bipap has sure helped me.  You're right, that may well be a consideration for Upset Spouse's husband.


Linda


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Click here for link to FAQ and topics
Click here for link to section on machines and masks

I don't think the jerking sounds like what you are describing at all.  It is his torso (since he sleeps on his side to face the machine, I see it in his shoulder most) that jerks w/ most breaths.  It began in recent months as the apnea was diagnosed, but has become more pronounced by far in recent weeks.  there is no movement in his limbs (except the tremors -- he was diagnosed w/ essential tremors years ago).

I took what the counselor said very much out of context, and I don't think that is fair to him.  What he was saying was in large part due to the associations I have with every part of this machine and repulsive mask and  others don't.  Because my father was debilitated at 53, making it impossible to share a bed w/ my mother for the rest of their 22 years together, that situation has been the biggest fear for me throughout the 15 years we've dealt w/ my husband's health issues (starting when he was just about 50, and I was 42).  Each hospital visit, each new plateau of medication/disease increased that anxiety to this point.
 The counselor knows I have been denying my feelings for the large part (I just really feel cheated) and lately especially I'm constantly beating myself up because I can't react like the other supportive spouses I have read in the forum.  He wants me to face those feelings, while recognizing that it is inexorable that the heart disease and all the other problems that go with it will not be reversed. Then work with him to move on to the next stage of dealing with it.  I am stuck in a very painful place.
Last night we did switch sides of the bed so that I would not be faced w/ the sight of the mask, vacuum cleaner hose up the nose stuff every time I walk into the room.  I loved him for going through the work of switching everything and I won't move out without giving this a try.  But after hours, I was once again sleepless, and unnerved at the jerking.