I love my Girlie but I feel so sorry for her - she spends most of the night watching over me - she has to suffer the noise of my CPAP - she has to suffer my right-hand side twitching all night long - Severe CSA is bad enough for me - in some ways, it is worse for her - how do your partners cope?

All the best

Keith

P.S.  We love each other - separate beds/rooms aren't an answer that we will think about!

P.P.S.  Sometimes (often), I think that she will be better off without me - I just know that without her, I'd be buggered (to use an English phrase)!  Is that selfish, or what?


_________________
CPAP since 29th September 2007 - ResMed Autoset S8 Spirit with Fischer and Paykel nasal mask.
http://www.bretondiary.com

My husband and I love each other, too, we've been married for 37 1/2 years.  He loves me so much that when I was snoring (pre-xpap) he would quietly slip off to another room to sleep once I was fast asleep.  He did this every night without ever complaining or telling me the real reason he would slip away.  When I discovered what he was doing I just slept in another room so as not to disturb his sleep.  This never destroyed or diluted our love for each other.


_________________
OSA Sleep Test 8/29/07, AHI 64/Sat. 74%
Titrated 10/1/07 and 9/30/08
BiPAP Auto M Series w/Humidifier 15/10cm
Opus 360 Mask; Ruby chinstrap

I started CPAP in July and my hubby never had a problem with it AT ALL.  We have always slept with a small air purifier in the room anyway as with four children it was nice to drown out the noise of teenagers, and he goes to bed a 8 PM as his job starts early.  There are also many machines out there that serve as white noise, or the sound of the ocean, basically just something that will make the noise not as noticeable.  Actually I find that as long as my nasal pillows are properly seated the noise is quite tolerable.

Now it reallly doesn't matter as he too is on cpap so we just both strap up and off we go to the best sleep we have had in many years.  I would imagine that the noise from your machine is still much better than that noise from snoring!!


_________________
~ElleMarie~ One day at a time......are you kidding me?.....sometimes it's just one minute at a time.

Jun 2007 AHI 100.7 started cpap at 9** Oct 2007-11** April 2009 Bipap-15/10
Respironics auto M w/ Optilife nasal pillows

Iking and Ellie Marie - am gong to ask my Girlie to talk to you - I can cope with a life without sleep - what annoys me is if I have to inflict it on the one I love!   Anyway - 6am here (in France) -am going to try for a few minutes sleep - beware, be very afraid - my Girlie might want to talk to you tomorrow and compare notes!

All the best

Keithy


_________________
CPAP since 29th September 2007 - ResMed Autoset S8 Spirit with Fischer and Paykel nasal mask.
http://www.bretondiary.com

Hi everyone, Keiths other half here, Jilly, well the poor fella has been and still is in a terrible state at the moment, even though he won't really admit it, as he said he has been mostly up all night, his nose is so incredibly sore, he managed half an hour with the mask at just past midnight last night, then had to get up, desperate for sleep, I told him to post on this Forum, I think he was a bit reluctant as he thought since he started with his mask he should be ok now, thus feeling a bit of a fraud positing, but I told him that whats the Forum for (obviously he knows this) so luckily he listened to me.

I dont really want him to know this, but last night was one of the worst sleeps (or lack of it) I have had, it was worse really cos he drunk a lot I mean a lot of wine, as he was so desperate to sleep, he tried his mask but was coughing and spluttering with it on, so of course it came off, I just had to leave him snoring his head off, and everything else that goes hand in hand with being rather pissed to include falling out of bed (bet there will be bruises), he has been up and back to bed a few times, but is back in bed now as we speak 10.15am Sunday morning, asleep without his mask!  I am typing this absolutely knackered, but Im not ill so I can put up with the general tiredness, but we both know not for long term.

I dont have a problem with the noise from his mask I never have had, I do have a problem though with his snoring when not wearing it

I don't have a problem with his twitching either!
'
I love this guy so much there is absolutely no way I wouldn't be with him, I do tell him that - and that I actually would be buggered without him!

I do watch over him like a hawk at night I can't help it, I can tell how long to the minute he has slept with the mask, I need to stop this obsessiveness!  

Tomorrow he is going to order a humidifier (I will make sure of this) he did use one before but couldn't get along with it, but he must try again which he knows.  He will also try this other gel which has been mentioned, I make a point of going with him to every appointment he has with the doctors and specialists etc. I get rather annoyed though with his GP as I dont think he really knows what to do next, as palms him off with anti-d's which is not the answer so he doesn't take them now.

One night last week I told him to try and sleep through the pain which he did, he slept with his mask for about 7 hours, he was totally a different person, he felt absolutely fantastic but alas he couldn't do again!

I'm sorry this is a bit disjointed, will post a bit more when I don't feel so tired myself, will let you all know how he gets on with the humidifier.  I can't imagine anyone can give any advice for me/us other then what has been said, but all your support is great. - thanks a lot.

Sleep well and thanks for listening

Jilly

It's time to get back in touch with your therapist.  Getting used to the CPAP takes some time and sometimes quite a bit of trial and error to get the right equipment.  A sore nose usually means you have nose pillows.  They may be too tight or you might need a change to a mask.  I couldn't tolerate the pillows.  Keep working at this, don't give up.

Jilly, I'm so sorry for both you and Keith.  As Chronie and I have recommended, Keith needs to try the route of using a heated humidifier and Ayr Saline Nasal Gel when he uses his mask.  If you can't purchase the Ayr then ask your pharmacist for another saline (non-petroleum) product containing aloe.  The aloe will help to heal the nose faster.  Be certain that Keith not only uses the saline gel every time he uses his mask but also several times throughout the day and evening until his nose is healed.  Once healed then he only needs to use the gel when using the mask.  
  
Seventyss just made a good point.  If Keith is using a nasal pillow mask then it's also possible that, in addition to, the lack of a heated humidifier, the straps of his mask may be too tight and thus contributing to his problem.  What mask does he use?  When did he last change the nasal pillows, if it's a nasal pillow mask (or interface, if he doesn't use a nasal pillow mask)?  If these need changed that would be a contributory factor as a reason people tend to over-tighten their mask straps in trying to cure leakage.  When in fact, over-tightened straps help cause leakage.


_________________
OSA Sleep Test 8/29/07, AHI 64/Sat. 74%
Titrated 10/1/07 and 9/30/08
BiPAP Auto M Series w/Humidifier 15/10cm
Opus 360 Mask; Ruby chinstrap

Thanks for your replies, Keith has just woken up again, I know we could do a search but we do not really know what nasal pillows are, the mask he uses is the ResMed Autoset S8 Spirit with Fischer and Paykel nasal mask, does not have nasal pillows.  He has used a humidifier before and couldn't get on with it, but as mentioned before, he is going to get one and try it again, bearing in mind your country and ours are totally different, whereas for example it is 10 degrees at the moment so very humid, damp and cool most of the year really, so the problem was when he used one before he had this horrible feeling of his lungs being filled up with water which made him feel so uncomfortable that he couldn't sleep!  catch 22 really.

We will also search out this gel tomorrow!

Regards

Jilly

You mentioned that Keith had a particularly bad night of sleep following drinking some wine.  It's interesting that my auto CPAP records that I need a 10 in pressure after drinking some wine vs the usual 8.  Drinking really can affect sleep.

Is Keith on an auto cpap?  If so, it could compensate for the change in needs it has a wide range. It's usually 2 above and 2 below the desired number, but could be set at a wider range.

Jilly, relax a bit.  Part of the anxiety you both have is worrying about offending the other. Jilly says the twitching doesn't bother her.  Keith, the "noise" of the CPAP is nothing compared to the snoring.   She's NOT better off without you.  

My husband of 38 years has worn a CPAP for 20 years while I've had mine for about 6 weeks. I'm on my third mask- one with nasal pillows. There is always the possibility that  you, Jilly, will need a CPAP someday, and Keith is the likely person to diagnose and send you to sleep lab.  

Sure hope you can solve this soon. I'm assuming that it is the INSIDE of your nose that is sore and not the OUTSIDE, right?

Jilly, is it the bridge of his nose that is sore?  This is common in new users and it means that the mask needs adjusting.  If it is an open sore, it is important to keep it clean and protected and perhaps also to wait until it has healed before using the mask again.  If it is just sore, he can protect the spot with a small band-aid or a piece of moleskin, which is what my husband used.

Suggest to him that he loosen the top straps just a little and tighten the bottom ones the same amount and then try wearing it to see what the effect is.  He may need to do the adjustments several times because he should only change a little bit at a time.  If he can't get the mask adjusted on his own, for goodness sake, go back to his supplier and try some different masks, perhaps a nasal pillows mask.  

To learn more about both machines and masks, go to the websites for the manufacturers - Resperonics, Fisher & Paykel, ResMed, Puritan Bennett, DeVilbiss to start.  Resperonics and ResMed are the biggies.

Hi again,

DIANNE & FRANCES thanks for your replies, yes we do need to relax a bit but time will make it easier and yes the twitching and mask noise really doesn't bother me.  I am not sure if his cpap is auto or not, will find out, yes I can well imagine drinking must change the pressure, he was so desperate to mask the pain so to speak, but it was more a one off to that degree!

The pain is inside his left nostril at the top red raw and burning like mad even though he has used all these various sprays gel etc. its still as bad as ever.  Will let you know how we get on.

Jilly,  Put antibiotic ointment on the tip of a Q-tip and swirl it high inside his sore nostril.

Jilly/Keith,

This is a long post so I hope you have the patience to read through it.  I have 3 areas that I want to address.

1.  A mask that goes over the nose does not normally cause sores inside the nose so I am not sure what is going on.  The most common place for a sore is as Frances said, the bridge of the nose.  Maybe he just has a pimple/cyst inside his nostril?

2.  You two are absolutely wonderful in the way you support each other.  It is important that Keith is treated because OSA is much more than being tired.  It wrecks the cardiovascular system among other things.  Here is a list of effects of untreated apnea.

The effects of untreated sleep apnea are severe and systemic.  Some of them are; increased risk of heart attack and stroke, increased blood pressure, heart arrhythmias, nocturia (because the increased pressure in the right heart ventricle makes the body think there is too much blood volume so urine is produced), headaches, fatigue (duh), memory and concentration problems, weight gain (sleep deprivation causes weight gain for several physiological reasons, one being the alteration of the hormones leptin and ghrelin), apnea induced seizures, there is a link to diabetes, there is a link to GERD, night sweats, depression, anxiety (each apneic event is a true suffocation and elicits the "Fright or Flight" adrenalin response), Fibromyalgia-like symptoms, impotence, relationship and job issues, car accidents, etc.

3.  Jilly, you mentioned something very, very important.  You said Keith twitches.  What follows is my cut and paste discription of why he may be doing that:

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.

Periodic Limb Movement Disorder (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.

Anemia exacerbates PLMD/RLS so Keith would need to be checked for that.  Additionally, if I drink, my symptoms are much worse.  So, at least in my case, alcohol exacerbates my RLS/PLMD.  Umm, not that that stops me.  I just try to make sure I take my meds. before I go out clubbing.  Like OSA, PLMD is very disruptive to sleep.  So even when CPAP is working great, if Keith has PLMD and it has not been addressed, he will still feel tired.

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.

You can find more information here:

Restlessless Legs Syndrome Foundation

Keep us posted!!

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

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

DIANNE thanks for that I will tell him tomorrow, he is asleep at the moment has been on and off all day with the mask! my feeling is that 3 days without the mask it might have given him a bit of time for his nose to heal a bit, but will know more!  its 10.40pm here now and I am leaving him by himself for as long as possible whilst Im working on the computer, but got to go to bed soon! LOL

VICKI Thanks for your detailed reply, in reply to No.1) we thought he might have got sinus problems, but he had a scan last week and they say there is nothing wrong with them, so that one is eradicated, it could be simply as you say a pimple/cyst up there but it has to be dealt with ourselves the doctor/spec. can't seem to help.

No 2) He actually has CSA and has had his mask for just over a year now, hasn't had that many problems apart from the usual.

No 3)  Without sounding 'big headed' we are aware of a lot of the symptoms you have mentioned, interestingly, you mentioned the symptoms of PLMD being a neurological disorder perhaps that is because he has CSA as being from the brain?? I didn't realise though that PLMD needs to be addressed I just thought it was part of the apnoeas and there was nothing you could do. Incidentally I get RLS sometimes and know how awful just that can be! but daren't mention it as I dont have all the other problems you all have.

I will talk with him tomorrow to see what happened when he had his sleep study and if the doctor said it is PLMD or an apneic event, perhaps he needs another study?

Anyway, thank you so much for your help and informative email, will definately keep you all posted.  Keep your fingers crossed for a good nights sleep for him now!!

Sleep well all of you

Jilly

DIANNE thanks for that I will tell him tomorrow, he is asleep at the moment has been on and off all day with the mask! my feeling is that 3 days without the mask it might have given him a bit of time for his nose to heal a bit, but will know more!  its 10.40pm here now and I am leaving him by himself for as long as possible whilst Im working on the computer, but got to go to bed soon! LOL

VICKI Thanks for your detailed reply, in reply to No.1) we thought he might have got sinus problems, but he had a scan last week and they say there is nothing wrong with them, so that one is eradicated, it could be simply as you say a pimple/cyst up there but it has to be dealt with ourselves the doctor/spec. can't seem to help.

No 2) He actually has CSA and has had his mask for just over a year now, hasn't had that many problems apart from the usual.

No 3)  Without sounding 'big headed' we are aware of a lot of the symptoms you have mentioned, interestingly, you mentioned the symptoms of PLMD being a neurological disorder perhaps that is because he has CSA as being from the brain?? I didn't realise though that PLMD needs to be addressed I just thought it was part of the apnoeas and there was nothing you could do. Incidentally I get RLS sometimes and know how awful just that can be! but daren't mention it as I dont have all the other problems you all have.

I will talk with him tomorrow to see what happened when he had his sleep study and if the doctor said it is PLMD or an apneic event, perhaps he needs another study?

Anyway, thank you so much for your help and informative email, will definately keep you all posted.  Keep your fingers crossed for a good nights sleep for him now!!

Sleep well all of you

Jilly