Cpap update

[twist330]

Ok - so I went for  the follow up appointment at the sleep apnea clinc and they have given me a humidifier for the Cpap machine, so hopefully this will reduce the dryness. They also read the SD card which had been recording the pressures that I had required over the last 3 weeks. They were quite suprised at how high they were. But also found that the machine was set up for a nasal mask not a face mask.( the clinic set the machine up at my first appointment) This and the dryness may be the reason the pressure readings were so high.

Anyway I used it last night with the humidifier set on 2. But I still woke up in the middle of the night with a very dry mouth. I find it really difficult to get back to sleep and lay awake for hours eventually falling asleep just before I should be getting up.
So I will try the machine on 3 tonight. But wonder what setting our Cpap users here have there humidifers set at?
Thanks
Twist

[Ed276]

I use 17 cmH2O pressure and a full face & chin strap under the jaw around the head. My epiglottis blows open so this pushes my tongue to the roof of my mouth and stops it from continually puffing, swallowing air etc.  I spray my nose with a prescription nose spray before cpap use.   It's more humid here so I stopped using heated humidity and my boggy sinuses stopped staying infected.  

I have OSA, inheirited insomnia, Rls & Plms, I am an RpSGT  also.  Rescently started trying a Gecko gel pad with cpap's at work. It cuts leaks in the eyes & I heard about breathware    dot    com    has 3rd party head straps that do not strech during the night when they warm up from body heat.

Ed

[twopack]

A brain stem lesion is visible in the medulla on my 1990 MRI but is no longer seen on the imaging done in 2009.  

I was diagnosed with predominantly obstructive sleep apnea (OSA) in 2006.  This type of apnea is caused by upper airway obstruction.

There is also a condition called central sleep apnea that occurs because the brain doesn't signal breathing properly.  I apparently have this to some degree as well but it is less significance.

The two conditions combined to prevent me from enjoying a full minute of restful sleep at any time during the six hour sleep study.  No wonder I was always tired!

Mary

[Deb61]

I'm having a sleep study done this summer.  Do all of you ladies with sleep apnea have lesions on the brain stem causing the problem?  

[twopack]

So, I don't suppose there's any chance you'd consider floor sleeping?  Just kidding... LOL

I know there are a variety of chin straps available for purchase online.  There are also apnea forums where people swap ideas about home-made designs that work.  

If your asthma makes exhaling against pressure a real problem you may need BiPAP rather than CPAP.  CPAP maintains one continuous pressure.  BiPAP is variable with two pressure settings - a higher one to keep air passages open during inhalation and a lower one to keep expiratory resistance to a minimum.  

It does seem your present set-up could work against the best interest of your asthma.  And if MS leaves your intercostal muscles weak you could be getting a double whammy at times.  You might just have to lay the circumstance of your breathing needs out very clearly if you are to get real relief for your apnea.

Good luck and nighty-night.
Mary

[twist330]

Thanks for all the information.

The clinic gave me a fully face mask as this was their answer for sleeping with my mouth open.

I'm not congested at all, but since I used the Cpap machine I wake up with dry blood in my nose which I can blow out and clear.

However I do have asthma so it is important to that I can expel the air in my lungs and this is probably why my mouth opens.

The unit is on the floor beside my bed and I don't really have anywhere else I can put it.

No ones mention a chin strap at the clinic, but I might see if I can order one on line as my DIY version an material elastic band around my head cause a bruise under my chin and I still manage to open my mouth.

Anyway I shall keep pressing on...
Thanks for all your help.
Twist

[twopack]

I know it's easy.  That doesn't mean it's safe.  

Even the nasal pillow headgear should be lifted away from the nose when drinking.  It uses the same forced air principal a mask does.  The delivery is just a little more direct.

Please ask your neuro or (better yet) respiratory provider for verification in your particular case.  I have heard more than one respiratory therapist give stern warning about this while stressing that prevention is far superior to treatment.

Mary

[johnniebear]

with the Nasal pillows, its very easy for me to get a drink from the straw.  I don't have to remove anything.


And  they supplied me with the Chin strap  when I told them about my concerns,  they also offered a full mask,  I didn't like that,  so the nasal pillows are working for me.


take care
JB

[twopack]

Hey JB, good idea but I do hope you are removing your mask before squirting any water into your dry mouth!!  It's simply too easy to loose control over the destination of a total gulp when air from a CPAP is giving it a big boost to propel it faster than usual toward the back of your throat.  Once there, it can easily be directed into the trachea rather than the esophagus.

We can't underestimate the force of CPAP's directional airflow force.  Ever try to talk with your CPAP on?  It's the air constantly blowing through your vocal cords that makes it sound so strange.

I keep water by my bed too.  Lots of times I swish and swallow during the night.  If not, I usually need some as soon as I get up.  It's a great idea everyone - as long as your mask or CPAP is OFF.

Mary

[twopack]

I would think sleeping with your mouth even partially open would trigger the machine to amp up the pressure.  It has to be sensing psi - or some other measure bio-engineers would know about.  Any break in a closed system design allows air to escape which, in turn, demands a higher pressure input to reach the pre-set trigger pressure.

It seems to me you won't realize the full benefit of CPAP unless your team finds a way to close the system.  Only then will the unit be able to (find and) deliver adequate pressure to open your airway while avoiding over-the-top air flow levels that create additional dryness.

I wonder, do you have nasal congestion during the day that is severe enough to force mouth breathing?  Do you experience nasal congestion at night?  That could give you clues to a solution.

Sorry to ask personal questions.  Naturally, there is no obligation to answer.  Your situation has just captured my attention and I'd like to help you find some answers.

Mary

[twopack]

Sounds like you’re making progress Twist.  Did they say anything about the chin strap?  I am wondering if the easiest fix for the humidity level might be to change the position of your CPAP unit in relation to where your head is when you sleep.  Placing a unit closer to level with your head will usually allow for more humidity level with lower settings.  The unit should NOT be above your head however - unless you want to start gargling in your sleep!  (Nope, not recommended)

Heat and air flow work together to create the humidity that blows through the tubing.  It sounds like there is plenty of air flow in your case so you likely need to bump up the heat (if the unit is adjustable) or raise the unit closer to level with your head to get the amount of humidity you want.

Of course there’s nothing wrong with just bumping up the setting.  I've just learned along the way that the higher the setting is, the more distilled water the unit is going to s*uck down each night.  I hate using more and spending more if I can get the same result with less.  Distilled water is one of the cheapest items on my health care cost list but I still have to tote it home from the store at 8 lb (~3.6kg) a gallon.

When I slept in a recliner I kept my CPAP unit on a low stool close to the floor.  My humidity dial allows selections from zero to #5.  I always had it set on at least #3 and often amped it up to #4 in the winter.  Now I sleep in an adjustable frame bed and have the CPAP unit sitting just below my raised head sleeping position.  I didn’t realize at first that I would need to lower the humidity setting.  It became clear within a night or two when I awoke to water beads collecting in the tubing and dripping from the nasal pillows.  The humidity balance returned to normal as soon as I decreased the setting to #2.

With this positioning I feel well hydrated at a lower setting even during the winter months when our home heating system is busy drying the air.  Infrequently I lower the head of my bed completely and lay on my side.  When I do, my head ends up near level with (or even a tad below) the CPAP unit.  If I stay in that position very long I have to dial down to setting #1 or turn the humidity off altogether - to avoid one of those unintended nasal irrigations. Ugh!  I really do need to look for a slightly shorter stand for my unit OR find someone who can remove an inch or so from the legs of the present one.  It isn’t totally safe this way.

All the things like air humidity, air temp, mouth breathing, drug effects, delivery gear, respiratory rate, personal preference, etc factor into success too of course.  It's a very individual thing and sometimes requires a process of trialing different combos of equipment, settings and positioning.  And sometimes it just seems to get easier once you get a string of restful sleep going.  As Lulu said, keep on tinkering.

Mary

[twist330]

Thanks all
Well last night I set the humidifer to 5 and although I still woke with a dry mouth but not so bad as it has been so I'm on the right track.

Lulu your absolutley right that keeping your mouth shut is the answer to the problem, but mine just won't stay shut when I'm asleep.

The pressure of my Cpap machine regulates it self, as required when I woke last night it was at 18. It is set to start at 4.

I will persevere!!!! and keep you up dated :)

Twist

[hbananas]

Hi, Twisty.  I usually have my humidifier set on 8 out of 10.

[johnniebear]

my pressure is at 15,  the humidity is at 5,  plus I use a chin strap,  my big mouth still wants to fly open.

  Just to let you know,  I still have a dry mouth and I keep a squeeze bottle of water near me.  The dry mouth isn't as bad as it was , so for me using the chin strap & the higher setting..has helped.


good luck.
JB

[Lulu54]

the biggest factor in having the dry mouth is whether you can keep your mouth closed and breath in and out exclusively through your nose.  I notice a difference almost immediately.

The nasal mask setting should also make a difference.  I was just in the sleep clinic yesterday and they did an adjustment to my machine and they bumped the ramp range.  But then last night I had a lot of problem with mask leakage that I had not had since I switch the size of my mask.

This all really  is a lot of trial and error - keep tweeking the treatment until you find what works for you.

-L