I am hoping someone out there may have some information that can help our situation, or at least provide a few words of support to help us get through until we start reaping some of the benefits we thought would happen when he started using the machine.

My husband went for the sleep studies in July & got a cpap machine at the beginning of August.  Short of a few times he has actually taken the mask off while he has been asleep, he has been a very diligent user of the machine.  He used the nasal mask first--but did not have much luck and switched to a face mask after about two weeks.  He was told he wakes up about equivilent to once every 2 minutes during the night and his legs move to the point of him running 5 miles in his sleep.

He has been off of work due to fall shut-down since the end of August, so he has had the opportunity to have full nights of sleep without the stress of work.  He has gone back to work this week.

Since August, he has change his mask to the full face mask.  He was started on a sleeping pill, which was doubled a couple of weeks ago, after I was woken up repeatedly one night by his leg spasms shaking the bed.  Now they have taken him off the sleeping pill and put him on Clonazepam this past week, because he still has major leg aches during the day.  The Dr.s office said they did not want to hear from him for 2 weeks until this new medication has a chance to work.

When he wakes up in the mornings, he looks awful.  The area of his face the mask covers looks fine, but his cheeks look like they have been streatched all night--kinda of a blood-hound look.  The area under his eyes looks extremely baggy.  Basically, he looks as if he has been partying all night and is hung over.

His mood is awful.  He feels every comment I make about anything is trying to one-up him or cut him down.  His patience is none existent and is irritated by simple things--We ordered a new refridgerator on 10/1, there is a manufactures delay, the store has given us $50.00 but he spent this morning so ticked off and said that they needed to get us a refridgerator TODAY (ours is still working).  He is getting very hard to live with and it is not looking like there is any light at the end of the tunnel--that or the tunnel is too long to SEE the light.

I am nearing the end of my rope and would like to hear from those of you who have lifed through similar experiences who can offer some words of wisdom.

Thanks.

I'm very new to all this but even to me it seems obvious that your husband's CPAP is not working. Maybe he should have another sleep study using his own equipment and see if he is getting enough pressure.

The irritability he has is no doubt due to his lack of restful sleep. I'm in that state right now... still waiting on getting a CPAP.

He has had the pressure turned up on his machine, but has not had a study done using his own machine.  I am concerned over this new med- Clonazepam--the side effects actually state that it can make sleep apnea worse!  I am really questioning this new med and wonder if anyone else out there has had this RX and had success.

Dear Frustrated Wife,
My husband has been trying to get accustomed to CPAP since January.  We could write a book about good drs., not-so-good drs., drugs, accessories for CPAP, insurance, etc.  I bought an air mattress 2 months ago, as his leg shaking is too much for my heart to take when trying to fall asleep.  He is now taking AMBIEN, but the APNEA is not resolved.  The latest is the dr. ordered c-flex, (helps when exhaling) which is not compatibale with his machine.  I doubt the insurance co. will buy a new machine.  With so many people suffering from this condition, there should be an easier way.
I feel for you and wish you and your husband the very best.  Document all the changes you make along the way to keep track of his treatment.
I'm so tired...

Struggling Wife wrote:

I am hoping someone out there may have some information that can help our situation, or at least provide a few words of support to help us get through until we start reaping some of the benefits we thought would happen when he started using the machine.

My husband went for the sleep studies in July & got a cpap machine at the beginning of August.  Short of a few times he has actually taken the mask off while he has been asleep, he has been a very diligent user of the machine.  He used the nasal mask first--but did not have much luck and switched to a face mask after about two weeks.  He was told he wakes up about equivilent to once every 2 minutes during the night and his legs move to the point of him running 5 miles in his sleep.

He has been off of work due to fall shut-down since the end of August, so he has had the opportunity to have full nights of sleep without the stress of work.  He has gone back to work this week.

Since August, he has change his mask to the full face mask.  He was started on a sleeping pill, which was doubled a couple of weeks ago, after I was woken up repeatedly one night by his leg spasms shaking the bed.  Now they have taken him off the sleeping pill and put him on Clonazepam this past week, because he still has major leg aches during the day.  The Dr.s office said they did not want to hear from him for 2 weeks until this new medication has a chance to work.

When he wakes up in the mornings, he looks awful.  The area of his face the mask covers looks fine, but his cheeks look like they have been streatched all night--kinda of a blood-hound look.  The area under his eyes looks extremely baggy.  Basically, he looks as if he has been partying all night and is hung over.

His mood is awful.  He feels every comment I make about anything is trying to one-up him or cut him down.  His patience is none existent and is irritated by simple things--We ordered a new refridgerator on 10/1, there is a manufactures delay, the store has given us $50.00 but he spent this morning so ticked off and said that they needed to get us a refridgerator TODAY (ours is still working).  He is getting very hard to live with and it is not looking like there is any light at the end of the tunnel--that or the tunnel is too long to SEE the light.

I am nearing the end of my rope and would like to hear from those of you who have lifed through similar experiences who can offer some words of wisdom.

Thanks.

Hi,

From what you are saying it looks like your husband is still suffering from the symptoms of OSA.

Sleeping pills are not something normally associated with OSA sufferers using CPAP. Depending on the type of pill, it can relax the tissue in the airway which defeats the purpose of CPAP.

I think it best if you go back to the start and let us know what type of apnoea your husband has (mild/moderate/severe), the pressure that the cpap machine is set at and whether or not a titration study was completed, even better still if you could post a copy of the sleep test results.

The leg spasms, was he diagnosed with RLS (Restless Leg Syndrome) or something else.

The baggy, bloodshot eyes might be caused by air leaks from his mask. The irritability might be through tiredness (due to ineffective treatment), extreme hypertension or other.

You mention that he is a dilligent cpap user. Please don't take offence, but are you sure, or is he just telling you this.

If you can post back with more information (as above) I have no doubt that you will get some sound advice.

Kind regards,

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Has there been any improvement?  I.E. less drowsy during the day, etc?  Bout a month or so after starting treatment I seemed to get very irritable, but the other symptoms (daytime drowsyness, and dark circles) went away.  Once my sleeping leveled out, that went away. (ok, don't ask my wife that question )  

Norrisa, When you mentioned leg shaking, was he evaluated for restless leg?  That can do a number on your sleep too.

Mike,
My husband has 77 DBE/hr., or severe apnea.  When sleeping pills were prescribed about 6 weeks ago, I thought since he hadn't adjusted to the machine he got in Jan., perhaps he needed to 'learn' to sleep through the night again.  I was concerned because of what I read about APNEA & CNS surpressants, but since the dr. prescribed them for 7 days I thought he would be okay.  As you can see, 7 days is now 6 weeks, and now he can't seem to sleep without them.  When he takes a whole pill he remembers NOTHING that occurs during the night (waking to go to the bathroom, breif conversations we have), and 1/2 pill doesn't seem to be enough to allow him to sleep.

He was using a full face mask regularly, but the kicking (not RLS as 2 drs. confirmed at the right titration (12) all leg movement ceased) was awful, along with the snoring, indicating there was a leak.  He now has nasal pillows and falls asleep okay, but wakes up when the machine hits 11 or 12.

Thanks again for replying.  As you can imagine, life has been more than either of us can bear these days.

Is he using an autotitrating machine or ramp?  Unfortunately some folks aren't able to use auto titrating as it wakes them up.  You might talk to the doc about switching from a sleep aide to something like benedryl (its non habit forming and helps with allergies).  I think one of the mods (Vicki) had that problem, hopefully she will chime in.

clonazepam and other benzos shouldnt effect the CPAP much at all and may help with sleep and RLS
some people are known to say they use CPAPs when they dont and to leave the machine running overnight to alter the hour meter
the air intake of the CPAP mustnt be blocked with a cloth or a plastic bag

norrisa wrote:

Dear Frustrated Wife,
My husband has been trying to get accustomed to CPAP since January.  We could write a book about good drs., not-so-good drs., drugs, accessories for CPAP, insurance, etc.  I bought an air mattress 2 months ago, as his leg shaking is too much for my heart to take when trying to fall asleep.  He is now taking AMBIEN, but the APNEA is not resolved.  The latest is the dr. ordered c-flex, (helps when exhaling) which is not compatibale with his machine.  I doubt the insurance co. will buy a new machine.  With so many people suffering from this condition, there should be an easier way.
I feel for you and wish you and your husband the very best.  Document all the changes you make along the way to keep track of his treatment.
I'm so tired...

Thanks for helping me--this reassures my thoughts that I am not the only wife out there suffering as well!

Daniel,

No offense taken!  I appreciate everyones input!   My husband is very diligent at using the machine--It wakes me up when he takes it off--the rush of air.  Also, he starts snoring almost immediately when it is off.  Since he started using a sleeping medication, he has not taken the machine off in his sleep. His machine is one that ramps up (?) but it is a very fast ramp speed.  When he went in for his titration the tech told him he was the faster person to fall asleep that he had ever worked with -- about 2 minutes.

I don't know the severity of his diagnosis--  I guess I have to become more diligent about this.  I have been leaving it up to him to take care of himself in this situation.  I should note that we are in our 30's and have 3 kids and I was hoping he would be able to manage this without a lot of input from me.  This is also partly due to him being so irritable when I ask questions about what has been said -- he feels I am questioning his ability to do just about anything rather than just wanting to find out more--which adds to his irritabity.  He works near the doctors office, which is 40 miles from home, and has gone to the appointments without coming home first--so I have not been an active part of his treatment.  He has no other health issues/ no blood pressure problems or any other medical concerns.

Mike,

Initially we saw a very slight improvement in mood--but this also was occurring at the same time as his not having to get up for work at 3:30 AM, which really should improve anyone's mood!     We have been disappointed, as we had heard about others who feel so wonderful after starting with c pap treatment.

Norrisa,

When my husband took the sleeping pill that was prescribed, he too had entire conversations with me that were not remembered, which of course adds to MY irritability!


Thanks to all of you for chiming in.  At this time, all I know is that I have slept worse while he has been off of work, as he gets up at 3:00 AM and I don't get up until 6:00 AM, so evidently I get my own 'quality' sleep after he is out of bed.  He is back to work now, just 2 days this last week, but he is so unbelievably angry about everything and anything.  We need to figure out something soon so we can live like normal people again.

I am 64

I have been on  my CPAP machine (With C-Flex) now for about 3 1/2 months,  and I have experienced some results,  but  not where my Dr. suggests I should be.

I have a comfort-gel nose mask:  setting on machine = 13: heat set to 3:  

I have lost the night sweats:  I have lost the snoring - my wife loves that part of it:  I have not been having the vivid dreams:

BUT  I am still tired all day.  I wake up tired.  I want to sleep during the day.  I feel !@#! all day long,  and I to am frustrated,   but I'm not cranky  -  yet         

I had a Dr.'s appointment this past Tues. and he tells me I have to keep up the treatment,  even though I have been so frustrated that at 2:30 am I have shut down the machine and flung the mask to the floor.

So,   your hubby isn't alone in his frustration.

And my wife too is struggeling with the noise of the machine  -  ear plugs last night to get a reasonable sleep.

Good luch guys.

I am 64

I have been on  my CPAP machine (With C-Flex) now for about 3 1/2 months,  and I have experienced some results,  but  not where my Dr. suggests I should be.

I have a comfort-gel nose mask:  setting on machine = 13: heat set to 3:  

I have lost the night sweats:  I have lost the snoring - my wife loves that part of it:  I have not been having the vivid dreams:

BUT  I am still tired all day.  I wake up tired.  I want to sleep during the day.  I feel !@#! all day long,  and I to am frustrated,   but I'm not cranky  -  yet         

I had a Dr.'s appointment this past Tues. and he tells me I have to keep up the treatment,  even though I have been so frustrated that at 2:30 am I have shut down the machine and flung the mask to the floor.

So,   your hubby isn't alone in his frustration.

And my wife too is struggeling with the noise of the machine  -  ear plugs last night to get a reasonable sleep.

Good luch guys.

My husband also started off with the nasal pillow type mask, but found he was too stuffy to have it be effective as well as he would not keep his mouth closed even with a chin strap.  He sounded like one of those inflatable bouncer things loosing air when he opened his mouth, which woke me up.

He is now using a full face mask, but has a beard, so he has the straps really tight to hold it in place.  

Also, about the leg spasms--I don't know if he has officially been diagnosed with restless leg syndrome or if it something else.  Until he started using the full face mask, his leg movements never woke me up, so it would seem that the leg movement is actually worse than better.

I think I will be calling the doctors office this week, even though they said they didn't want to hear from him for at least 2 weeks for this new medication to start working.......any other suggestions as to what EXACTLY I should be asking them?

I am a current user of clonazepam or the generic version, klonopin.  I have used this rx for 3 years now.  I am also a current cpap user of only a month and a half.  I was prescribed clonazepam for anxiety/panic disorder.  It is actually stronger than a sleeping pill, gearing more towards the end of the scale for people with seizures.  I am assumed they prescribed it because of his restless legs.  I am not going to be a doctor and guess why they didn't choose a different med, but I can take it and sleep with my cpap fine.  I only had the "bad" side effect your husband is having when I wasn't getting enough sleep.