Any Clues?

[Lee Lee]

Hi,
My husband won't get on this message board, so I have to do his dirty work for him!!
Anyway..he's been on the hose for 2 months or so. His numbers are good, under 5 for everything, AI, HI, AHI.
He takes the mask off after 4 or 5 hours to put the ancient Yorkie on the floor , then goes back to sleep for a while, and refuses to mask up again.
He says he is more exhausted now than he was before CPAP. He says 6 hours pre-CPAP felt better than 4 or 5 on the hose.
Wouldn't you think that 4 or 5 hours is better than nothing?
Could it be he's now getting rest and his body wants more?
Help me out here. He's looking to me (seasoned Pappper) for explanations.

[OZZZZZ]

I'm not a doctor but I can understand why your husband feels the way he does.

I've been on the machine for about 2 months as well and I can tell you I missed those machine-free days so much I treat myself to a sleep without it now and then. I have severe sleep apnea (45 time per hour) and if my doctor did not threaten heart and respiratory problems and early dementia etc etc I would prefer to be tired than be tied to a machine. That's just me, a free spirit.

My sleep apnea is caused by radiation treatment for cancer which damaged my palettes. The machine wakes me with its hose whacking me in the night, the machine wakes me with blasts of air, the machine prevents me from holding a warm body through the night instead of being fettered to it, the mask suffocates me (metaphorically) and the nose piece bruises my nose, I wake with marks on my face and crazy hair.

I am suggesting part of the problem is psychological. It is distressing for some to be on the machine. Not all of use feel grateful to be on it. We don't want to be on a machine; is that too hard to understand?

Tell you husband YES IT IS HARD; IT MUST BE HARD - not GET USED TO IT; IT'S GOOD FOR YOU

[Lee Lee]

Ozzz, I am so feel your pain!! I went through a lot of that at first, too. Still, it's not exactly blissful when I "hose up", but it has gotten better.
I truly hope you get some peace about this soon.
If I can be of assistace in any way, let me know!
Lee Lee

[Wulfman]

Hi,
My husband won't get on this message board, so I have to do his dirty work for him!!
Anyway..he's been on the hose for 2 months or so. His numbers are good, under 5 for everything, AI, HI, AHI.
He takes the mask off after 4 or 5 hours to put the ancient Yorkie on the floor , then goes back to sleep for a while, and refuses to mask up again.
He says he is more exhausted now than he was before CPAP. He says 6 hours pre-CPAP felt better than 4 or 5 on the hose.
Wouldn't you think that 4 or 5 hours is better than nothing?
Could it be he's now getting rest and his body wants more?
Help me out here. He's looking to me (seasoned Pappper) for explanations.

Hi Lee Ann.

Well, yeah, 4 - 5 hrs. is better than nothing......but if he's going back to sleep after he un-hoses, he's undoing some of the gains he's made during the night.
I know in my case, I had to "work up" to longer nights (much more than the minimum of 4 hrs.), but I tried not to go back to sleep after I took my mask off. Didn't always work, but I did take my therapy seriously. As I've mentioned in the past, at about two weeks into it, I came down with a horrible cough/cold/whatever that forced me to go without my machine for 10 nights. I realized how much this therapy was helping and made me more determined to make it work.

Does he WANT help? Is he taking his therapy seriously? What equipment is he using? If he's using a nasal mask, is he mouth-leaking?

Some people respond to TLC and some people respond to "the padded 2 x 4". Seems to me like most "adults" would understand that this condition damages the Hell out of one's body and would take this therapy seriously. But, obviously that's not the case. Yes, there's an adjustment period, but as long as he keeps diligently trying.......I guess that's what counts.

Good luck.

Den

[ricochetv1]

I think a lot of it has to do with your attitude toward the treatment. If you are thinking negatively about it, then you'll tend to manifest problems just because you're being very critical of every nuance of it. Think positively, and you'll tend to look more at results than the process itself, and ignore some or most of the annoying nuances that go along with it.

[mars]

Hi,
My husband won't get on this message board, so I have to do his dirty work for him!!

Help me out here. He's looking to me (seasoned Pappper) for explanations.

Hi Lee Lee

The old saying is -

You can lead a horse to water, but you cannot make it drink.

The new saying is -

You can lead a horse to water, but you cannot make it drink, but you can show it what it is missing!

In plain English, I think it means that if you concentrate on your own therapy, the results of which your husband will see, it will (maybe, hopefully, possibly) encourage him with his therapy.

The difficult thing about sleep apnea is that it is so insidious, the results cannot always be seen. My suggestion is to get a pulse oximeter, and let him see the results of no machine for himself.

Good luck.

cheers

Mars

[kteague]

Lee Lee,

Why does your husband still feel so bad even with getting 4-5 hours of treatment each night? Because the last thing he experiences before starting his day is the trauma of untreated OSA.

Couple scenarios that seem kinda comparable to me... Let's say as a diabetic my eating pattern is to eat a healthy breakfast and lunch, then allow myself whatever I want for dinner. Should I expect the healthy breakfast and lunch to prevent me from experiencing the consequences of a dinner loaded with carbs and sweets? No, I will have a headache, blurred vision, excessive thirst, and grogginess. Or let's say I injured my ankle and was instructed to keep it elevated and iced the first 24 hours. I complied the first 8 hours, then went on an outing that required much walking and standing. Should I be surprised that the day ended with swelling and pain?

Certainly the 4-5 hours on cpap is better for him than all night untreated, but as he is finding, it is simply not enough. He is still fairly new at this, so maybe his time will yet increase. If not awakened to put the "ancient yorkie" down from the bed, would he sleep on thru the night, or at least longer? Is the little doggie able to use a ramp? That's how a friend of mine enabled her Yorkies to go up and down without her assistance.

I certainly wasn't an all night user early on, though my lapses were not intentional. I either took the mask off in my sleep or fell asleep before I could put it on. Can say I've not layed down without gearing up and keeping it on for roughly 2 years now. I won't pretend my commitment to never laying down without my machine is noble or righteous. I'm just plain chicken, and I like how my life has improved.

Ozzz - You're right. Many, if not most, find some aspect(s) of this diagnosis and/or treatment hard. I am one who is grateful to have this treatment available because my nights were miserable and even scary, and my days even worse. That said, I'd still much rather not have to do this. Some of the functional aggravations you mentioned can likely be reduced by implementing some helpful hints on this board for hose management, pressure points from mask, strap marks, and maybe even blasts of air. For me, every little bit of aggravation I could resolve was important, since throwing a mask against the wall in the middle of the night, oblivious to consequences, is a little too close to being on the edge for my comfort. Hope your aggravations become fewer.

Kathy

[Juliebove]

I'm with your husband. Prior to CPAP I was sleepy most of the time. Now I am exhausted all of the time. I pretty much do what your husband does. Sleep for 5 hours with it, then another 4 or 5 without. I have tried all of those hours with and just can't function.

We've been having some hot weather here and I've been going without. I feel better!

[Hawthorne]

Juliebove - are you saying you are going without using your cpap because of hot weather?

Why would you do that?

[twasbrillig]

Here are some thing I have noticed and thought about. I have been using CPAP for five solid months. I have found that I, too, am more exhausted when I use it than when I don't. Here's the deal: I am pretty sure that CPAP is fixing my breathing issues, but causing other issues in place of those. The way I see it, when you have apnea or UARS (as I do) you by definition have a dysfunction. CPAP is a treatment that focuses on restoring breathing function. But is it possible that, while it is doing that, it is causing dysfunction in some other part of the system? Many medical treatments work that way. They restore function by addressing the largest issue with the most sensitive treatment known to medical science. But by the standards of the body system itself, even the most sensitive medical treatments are BLUNT, and one-dimensional (i.e., they only attempt to address a single issue.) Diabetes (insulin replacement, in particular) and thyroid hormone replacement come to mind as treatments which restore function without necessarily restoring the original balances and fine tuning that characterize these complex systems. In the case of breathing, the system is so complex that one treatment can actually cause other parts of the system to go awry. We already know that from other types of respiratory health problems.

So, is it possible that CPAP splints the airway to restore inspiratory function, but in doing so, causes unintended consequences somewhere else in the airway?

I am absolutely sure that it does, because of my own experience. (Not to mention what other folks ahve shared) My titration studies showed continued sleep fragmentation despite "effective" CPAP therapy. In fact, by every objective measure but the number of flow limited events, my sleep was WORSE in my titration studies. (Virtually no slow wave sleep, less REM, more spontaneous arousals) What was not measured in my titration studies, is whatever other physiological responses I have to CPAP that were causing sleep disturbance. In my case, it seems to be a reflex associated with the tongue-palate (velolingual) seal. No one put any sensors on my tongue, and there's no place on the sleep study report where they try to explain the funny way I kept making swallowing motions during that study as I went in and out of light sleep. The CPAP airflow apparently forced the velolingual seal open, and then a reflex was engaged to restore this seal. Each time this reflex was engaged, I experienced an arousal from sleep. It appears that this was happening consistently throughout my studies. And this velolingual reflex was a more frequent happening in my titration studies, apparently, than flow limitations were in my diagnostic study. Hence, worse sleep.

So I believe the jury is still out about what ELSE happens when you use CPAP. The research on unintended consequences is simply not being done. Nobody seems to be spending any time researching what is happening in folks for whom CPAP is not effective or is counterproductive. CPAP is a primitive, blunt treatment. Maybe it will treat your apneas, hypopneas and flow limitations well - and maybe it will treat them at the expense of some other function in YOUR sensitive respiratory system.

[Lee Lee]

Twasbrillig,
I wish I knew the answer to the questions about disruptions in other systems. I'm actually surprised to hear that people feel better NOT on therapy. It may have something to do with what triggers your apnea, and I know it's different for some people. It's very interesting that some people feel worse. I would think everyone would benefit from therapy. I know that sometimes, central apneas are poorly understood, and my husband had a bunch of them in his sleep study.

Den,
He is using the UMFF based largely on your good experiences! One of our wonderful forum members sent him one to try. It's a little smaller than he needs and I've ordered a fitting template to size him properly. He HAS been having some pretty hefty leaks.

Last night, he didnt use the machine at all, and he felt OK today. I was hoping to be able to see, "See??? See how bad you feel?" but it didn't happen.
I've kept trying to make this work, because I hate seeing him so exhausted, so irritatable and so miserable. That's not who he used to be. Some of this may have to do with the big 50th birthday in a few weeks, and the mask makes him feel like an invalid.
But,I have decided to stop playing RT. I'm so exhausted with trying. I've led my horse to water, and he's sipping, not drinking.
And you're right that most "adults" would figure it out and get help if they know they need it.
Thanks, you guys.
Sigh.

[frustratedmary]

I have been doing cpap for 10 weeks now. Still I feel exhausted. I haven't had more than 2 hours sleep since I started. I keep my mask on all night every night. I will be seeing a new specialist in Lexington, Ky. on Tuesday. We have to take control of our treatment and when it's not working we have to go further. Maybe he should try a new Doc and see if they might have a suggestion. My doctor was very conservative. I'm jusst stubborn enough to make this work, one way or another.

[mipookiebear]

I can understand him taking off his mask after only 4 or 5 hours. I have been doing this since June 13th. I keep my mask on at least 8 to 8 hours each night and I don't feel one bit better than before I started. I thought that my sleep would be much better. I think some of the problems is with this mask in your face & you can't get away from it. Then you have to keep moving the tubing back & forth as you turn. On top of all of that, air keeps blowing out around your head---making my arm cold. I am not talking about any mask leaks just the air from exhaled air. The only thing that keeps me going is the hope that I will feel much better from this therapy on cpap machine.

[Muse-Inc]

I...We have to take control of our treatment and when it's not working we have to go further. Maybe he should try a new Doc and see if they might have a suggestion. My doctor was very conservative. I'm jusst stubborn enough to make this work, one way or another.

Good for you FrustratedMary! Keep it up...gotta figure what you can do to make the situation better. There are answers if you can persist long enough to find them.

We are unique in how apnea mangles our life; it's up to us to find the keys to recovering our life.

[Muse-Inc]

...have been using CPAP for five solid months. I have found that I, too, am more exhausted when I use it than when I don't...

I'm sorry twasbrillig, that you're finding xPAP not delivering relief...and to all the rest of you struggling with this same/similar experience.

On the loaner APAP, we discovered I need less pressure than indicated in my PSG almost 2 yrs ago. Doc re-set my CPAP and I do feel better (not struggling to exhale against the pressure) but I'm still having events, hence the hunt for leaks and possible move to an APAP and the Hybrid mask.

Apnea is challenging and insidious, all too often it's not recognized until way past the point when significant derangement in our health has occurred. If one's had it long enough, the nightly oxygen deprivation has created hypertension as the Mt Everest study conclusively shows; the study's abstract is worth reading to see if an angiotension receptor blocker (ARB) will help; it controlled the hypertension created by high altitude oxygen deprivation. If apnea has been around for 5 or more years and one has genes for diabetes, studies show it's likely that type 2 diabetes will have setup. Some here have reported they have developed thyroid problems. We know that oxygen deprivation causes deletious changes in the brain affecting mood and undermining cognition and both long- and short-term memory. Many of us develop apnea as we age when we're already facing the challenge of diminished hormones and without frequent exercise reduction in muscle mass, both trying conditions to deal with because most physicians do not know enough about either to guide patients to healthy resolutions.

Each of the above is a challenging condition to deal with all by itself, to have simultaneous occurence as we 'hoseheads' experience is difficult indeed. Some apparently recover with significant weight loss and 100% compliance, some don't as we read all too often here.

I've been on CPAP for nearly 2 years and continue to see improvements, small but steady. I have hope that I will experience more recovery...I hope that occurs for each of you.