CPAP USERS - LET'S TALK!

QCA

My bi-pap doesn't pulsate in the least, even when the pressure lowers for the exhale.  Sounds to me like something's not working quite as it should.  Like Wrenn, I've turned off the ramp feature.  

Do take your machine with you and let the tech check it.   And as Wrenn said, do lie down if possible with each mask on to try them out.  Your position can make a lot of difference in the way a mask feels. 

Also, if the straps leave marks on your face, you can get covers for the straps from Pad-a-Cheek.  This is a woman who makes these soft flannel covers and has them available for just about any mask.  She has a website, or you can look her up on cpap.com.  I love these things!

Just hang in there and keep trying!

Kathy

Sunny_Girl

Ola Ladies - 

Blessings it sounds like an awful night & QCA thanks for the tip about the strap marks. Will go check them out now!!

Patty - I'd say sweet dreams but Blessings, you just need some sleep!

p

Blessings2011

Footprintsangel – there’s got to be a better way of stopping
a leak than cinching the headgear straps too tight! I wish you had Kaiser… we
are able to try on everything they have, then keep what we like… at no cost.
Future replacements, though, do cost. So glad you got your furbaby home with
you.

~ ~ ~ 

Wrenn – just checked – I have that same full face mask you
wear! Unfortunately, the Medium squishes my cheekbones so hard they hurt for
days. The Small is actually o.k., but the headgear is thick and hard to sleep
on. I am loving the Ramp feature, as I start out at 3 and build up to 6, my
starting point. My max pressure is only 16. Thanks for the tips about lying
down at the fitting session…. They told us about “gravity” at our first class!

~ ~ ~

WinningSoFar – good point about being committed to making it
work! After sitting through two Kaiser classes, and doing my own research, I’ve
realized how seriously harmful sleep apnea is to every organ in the body,
including the brain! I want to minimize that, AND feel good! I’ve always been a mouth breather, so I was
really surprised when using the APAP, my sinus passages opened up, and I
breathed through my nose all night. (And yes, I did use something to help me
sleep last night.)

~ ~ ~

QCA – DH went in and checked out HIS machine, and while
holding his breath, he says he felt the “pulsing” air jets. Mine only pulses on
the inhale, not on the exhale. And it’s irregular! I am definitely getting it
checked out on Wednesday. Thanks for the referral to the Pad-A-Cheek… will
check it out.

~ ~ ~

SunnyGirl – It’s funny. I actually DID have a dream that
first night. I used to have cats, but don’t any longer. DH is allergic, and not
really a cat person. But in my dream, someone felt sorry for me and gave me a
pet. Instead of a cat, it was a baby Dwarf Nigerian Goat, named Ludmilla. It slept on the bed like a cat. Where do I get
these things???????

Blessings2011

SO – night #2 on the APAP….

Went to bed armed with optimism, Benadryl, and a Norco. 

Turned the machine on around 11:30 p.m. I used the heated humidifier
set on 3, and the nasal mask, which I found has thinner straps on the headgear.
I just have to make sure it’s not pressing on the cartilage below the bridge of
my nose, or else I WILL have a plugged nose.

Things went fairly well. With the smaller mask, I didn’t
notice the pulsating air as much, so it wasn’t quite as annoying. Got up twice
to use the bathroom. Since there was no “quick disconnect” on the nasal mask
(like there is on the full face mask), I took the entire headgear off. (Later,
DH told me I could have just twisted the hose off… duh…)

But at 7 a.m. the machine quit completely. Turned itself
off!!! I was already sort of awake, having heard DH get up and get ready for
church.

I thought perhaps the water chamber in the humidifier was
dry. It wasn’t. By then, I’d taken the mask and all the headgear off, and realized
the mask was full of condensation. I mean FULL. So I got a Kleenex, wiped it
all out, checked the hose (none there) and put everything back on. Started with
the ramp on 3, then up to 6.

I slept for another 3 hours (making up for lost time
yesterday, I think) and woke up feeling pretty refreshed, and pulse ox at 98%.
But when I took the nasal mask off, it was filled with condensation AGAIN.

After I got up, I went to wash everything out and noticed
that there is a paper filter inside the nasal mask plastic fitting that I’ll have to ask how to remove.

I also found out how to get readings on the machine by using
the on/off button to scroll through the menu.

I’m keeping a diary to show the Sleep Tech on Wednesday.

I think if I can get all the bugs worked out of the machine,
and find a mask I like and fits well, and get used to the headgear, eventually
I can probably sleep through the night without major druggage!

I did join two sleep apnea forums, but those people seem so
focused on charts and graphs and other technical stuff. I keep searching for
Newbie info.

Thanks, everyone, for your encouragement and suggestions!!!
Please keep ‘em coming!!!

footprintsangel

I am going in to the sleep dr office tomorrow and see if they can

send anything to get me ok'd for help, I hope so cause I have TMJ

too. I will check with You as I fight to get this so I can not have a red spot from

it moving.

Blessings2011

Oh, footprintsangel - I hope they can help you at the Sleep doctors! 

Maybe they have samples of stuff they can give you, or at least some resources or contacts at the various manufacturers who may have financial assistance programs. Prayers for good news tomorrow! 

Blessings2011

Well, almost a week with my new APAP machine, and it's not going so well. 

At least I have the experience of going through BC and recon, and having to learn PATIENCE, right?

The problem is that I may have a defective machine. Instead of a steady flow of air, I'm still getting those annoying blasts of pressure. I feel like I'm on a ventilator or in an iron lung. The machine is trying to make me breathe faster than I normally do. Last night, even with a nice seal on my new Quattro mask, it actually fluttered around all the edges when the air started in with the pulsating blasts.

I did see the Sleep Tech at Kaiser yesterday, and I now have an impressive selection of 7 different masks. (They let you try as many as you need and keep them all.) What I have found is that a few nights I have gotten up and changed masks.... like going to bed with the nasal mask, only to find that my nose is completely blocked a few hours later, and changing to the full face mask.... GRRRR)

Today I called the company that sent me my machine. I have an appt with a Respiratory Therapist tomorrow to take a look at everything. I'll need to take in my machine and all my supplies... if it turns out the machine is defective, they are supposed to give me a new one on the spot. 

OR - it may just be a matter of settings. I am a VERY slow breather. Maybe the machine needs to be told that. 

More later.....

QCA

I'm so glad you're seeing a respiratory therapist, Blessings.  The pulsating effect never has seemed right to me.  I'm a 10 year veteran of Bi-pap use and my machine has never pulsed at all.  I breathe and when I exhale the pressure reduces by 6, then resumes to 15 on the next inhale.  No respirator feeling at all.  I've been thinking either the machine is defective or the settings aren't correct.

I was fortunate that I took to it like a duck to water, but I never had the obstacles you're facing.  Let us know what happens!

Kathy

Blessings2011

Thanks, Kathy!!! 

I really am determined to make this work....

Sunny_Girl

I just peeked at the Pad A Cheek site and might pick up a few of the straps. 

I work from home, so no one see's me when I wake up.  But there are those days that I wake up and get out if the house pretty quickly - WEEKENDS!!!

My sister in law had trouble with her heated humidifier.  Mine isn't heated - do you have that option?  Heat vs no heat?

Blessings2011

Hi, Sunny_Girl - yes, I have a heated humidifier on my REMStar Auto A-Flex machine. It can go from 0 (no heat) to 5 (or as DH describes it, "Tropical Rain Forest")....

I started with mine on 3, but that caused too much condensation in my nasal mask. I turned it down to 1, and insulated my hose, but still got the condensation.

What kind of trouble is your SIL having?

Blessings2011

YES!!!! I saw the "Respiratory Therapist" at the medical supply place today, and the machine is defective!!!!!

I say "Respiratory Therapist" in quotes, because she sure didn't dress or sound like any medical professional I've ever met (big, blinged-out, chipped acrylic nails, for one), but who can tell these days. DH said she was probably just the technician who puts the settings on the machines before sending them out for delivery.

Basically, she hooked up my machine to some kind of air pressure meter, and thank God, it did the horrible pulsing/blasting thing. "Um..." she said...."It doesn't seem like it's working right...."

YA THINK???? I felt so validated! It wasn't all in my head!

So tonight - starting over.

I am so tired, I'm just ready for a good night's sleep.

Blessings2011

Update: the "NEW" machine was even more crap than the original one!

Louder, more irregular puffing, hissing, blasting, and - to make matters worse - a nasty ringing/whining sound in the motor.

So I called and got another appointment with a different "Respiratory Therapist" for tomorrow.

One smart thing I did was take a video of me wearing the mask with the machine on, and the nasty air blasts were very audible.

TIP: if you want to amplify the sound on a smartphone, stick it in a deep glass or bowl. DH calls it a parabolic dish. Better than speakers! There is NO WAY the guy will tell me this is normal!

Blessings2011

Uh, well, heh heh......

First of all, the iPhone in the big mug worked great... the sound on the video was VERY amplified.

Second of all, this guy was a licensed Respiratory Therapist with over 30 years experience. He got right in there and tried to figure out what was going on.

He had me put my mask on, and listened to my machine. He tried all different sorts of settings. He brought out another machine and had me try it, again with different settings.

His explanation? My breathing pattern is VERY different from the norm. Many years ago, I went through a ten-week pain management program at Kaiser. We were taught to do slow deep breaths to control pain. These breaths included taking air in slowly all the way down til our abdomens rose, holding it briefly, then sloooooowly letting it out in a long exhale. I only take about 6 breaths per minute, which means that sometimes I'm not breathing at all, even when I am awake.

Because my breathing was so light, the machine was trying to figure out if I was inhaling or exhaling. At the end of my inhalations, it would be so light, the machine thought I might have stopped breathing and would respond with a pulse of pressurized air.

So the RT set the machine at a different sensitivity, so it could accommodate my light breathing.

Then he told me to try to learn how to breathe at 8 - 12 breaths per minute, instead of my normal 6 breaths per minute. I can do that while I'm reading or watching TV.

Then when the machine is on, and I'm trying to fall asleep, I need to concentrate on progressive relaxation exercises, not focusing on how my breathing matches up with the machine's air blasts.

He says my brain can re-learn how to breathe more normally with the help of the APAP, and that I will stop fighting it, and lose the sensation of hyperventilating as my own breaths are more aligned with the inner workings of the machine.

He explained things really well, and said if this didn't help by the end of a trial month, there is another type of machine he would recommend.

I liked him a lot, and everything he said made sense!

So I'll try again tonight.

p.s. footprintsangel - I asked him the question you asked me. I will PM you the answer.

sparkycind

USE YOUR MACHINE!!!!!!!!!!!!!!!!!!!!  I have been using my cpap for 9 years and cannot even imagine going without it.  I feel great!  You get so used to it that you will be unable to sleep without it.  When I had any surgeries, including my mastectomy, I had my cpap right there next to me in the hospital.  It is so important because you are even treated differently pre-op, during, and post-op because of the apnea. 

QCA

You're absolutely right, Sparkycind. I can't sleep without mine either, and if the power goes out I'm immediately awake and go sit on the couch!

Blessings, I'm glad you found that the machine was defective and got another. Your breathing rate is indeed very low (!), but I think the therapist is right in that you trained yourself to breathe in that way and can re-train yourself too. An APAP just might work better for you. Good luck tonight!!

Kathy

footprintsangel

Thank for the answer, I don't think she knew a lot, cause

she told me I cant have COPD unless I smoked, the same

clinic dr. I been to that I get chronic bronchitis a lot and that

can be part of my COPD, with my asthma. Some drs at clinics

should not be there.

Blessings2011

Thanks, sparkycind - you are like my DH. The first night he used his own personal machine (APAP) he took to it like a duck to water. In fact, he took his on a long trip to an old ghost town, where the guys stayed in a filthy abandoned miners cabin. (They ran a long extension cord down the road to a neighbors for power.) He was the only one breathing clean air throughout the night! Gone are the tossy-turny nights, the ear-splitting snoring, and the restless leg syndrome. He sleeps through the night, and even his lab tests have improved dramatically! He even puts it on for the occasional short nap!

~ ~ ~

QCA - DH loves his machine so much that soon after he got it, he ordered a battery pack for it just in case he wants to take it camping, or in the RV, or if the power goes out. It's not cheap, but it sure got him through the trip I described above. You just recharge it during the day. It works for about 3 days without the humidifier on, and 1 day with the humidifier on, before it needs charging again.

Yes, you're right. I need to train my brain to breathe differently, and stop fighting the rhythm of the APAP. Will give it my best shot tonight!

~ ~ ~

Footprintsangel - you have a lot going on with your lungs. Sometimes its hard to figure out what the issues are, but the main thing right now is that you get well from whatever is going on with that bronchitis! That will just wear you out. Big hugs to you!!!

Blessings2011

Well.... a new development....

Many, many years ago, I had some balance disorders. Over the course of ten years, I got them sorted out, and all my symptoms went away. I had to make some lifestyle changes, but no longer suffered like I had been.

Fast forward to last week, when I got my newly-titrated APAP back, and slept with it all night, using my nasal mask. I did that for a few nights, then all of a sudden, one morning I looked at the clock, and the dizziness overcame me.

I do have BPPV, that positional vertigo, where crystals in the inner ear fluid block the canals (like a gallstone) and cause spinning vertigo. But that's why I make no sudden head movements.

But since last Wednesday or Thursday, the dizziness had gotten so bad I have crashed into walls and nearly passed out. The worst of it was either leaning forward, or laying flat in bed. It was as bad as right after my Traumatic Brain Injury in June, when I had to use my walker.

I had several emergency Acupuncture treatments for it, which helped, but didn't make it go away. Then I started researching stuff like "CPAP and Dizziness" and found MANY references to "Alternobaric Vertigo" which can be common in divers who have different ear pressures in each ear. Along with that were many references to CPAP users experiencing the same thing...

And the worst cases seemed to be in those who had Eustachian Tube Dysfunction - which I do. Several members on Apnea forums said that their dizziness went away when they got ear tubes (through the ear drum, to equalize the pressure.)

So last night - no machine. Today - no dizziness. Of course, I'll be meeting with my ENT/Vestibular specialist at the hospital for more discussion...

But have any of you experienced dizziness while using your CPAP? Or the next day? Oy, what's next?

wrenn

I have BPPV and often think it is my cpap causing it but my ENT and anyone else I have seen about it disagree. They basically say "et used to it" which I have essentially but it would be nice to not feel like I am walking in a canoe. I am also less dizzy when I use a decongestant....which I can't use often because of blood pressure.

I was happy to read this confirmation of my suspicions.

Blessings2011

wrenn - I found SO many posts on CPAP forums of people complaining of dizziness...

Having gone through nearly ten years of tests, I understand that dizziness is really a diagnostician's nightmare. There can be SO many causes!

Primarily, BPPV leaves you spinning... but like you, I feel more like I'm walking in a canoe.... or on a waterbed.... or on sofa cushions. I believe it is the difference in air pressure in each ear.

I try to use my Sinus Rinse every night, along with my Flonase steroid nasal spray. One night, when I really wanted to use my nasal mask and was sort of stuffy, I put some Afrin on a Q-tip and stuck it up my nose. I thought that would give me fewer side effects than actually snorting it.

But for the past three nights I have not used the APAP - and for the past three days I have had NO episodes of dizziness! Hmmmmm.......

I sent an email to the Sleep Lab Technician, and will make an appointment to see my ENT.

Stay tuned!

wrenn

My first dizzy spell was before I started using cpap so I wouldn't be surprised if it is the apnea causing the pressure problems and sometimes cpap helps (depending on the night and the sleep positions) or at least I am wondering about that. I had a really bad day a few months back and had used my nasal rinse just before putting on my mask. I felt like I had created some kind of imbalance with that or the water hadn't drained out before lying down. I think it will be really hard to solve.

I was in hospital a couple of years ago and didn't have my cpap and I woke up with blue lips every morning. That tells you that you need to use the machine. Damned if you do/don't.

Because of your post I am taking my machine it to have it set to a set pressure for a while to see if that helps. I think the varying pressures might not be good.

Blessings2011

wrenn - I tried to make an appointment with my ENT, but they said I needed a referral from my PCP, who is out of the office til December. I did see the On-Call today, and he honestly didn't understand half of what I was talking about when it came to Eustachian Tube Dysfunction, or Alternobaric Vertigo.

What he DID do was refer me to my Audiologist so I could get a current Audiogram. (She's a friend... we went through our Undergraduate Audiology program together, then she went on for her Masters and her Doctorate)

She will also be able to do a Tympanogram, showing just how differently the ears are maintaining pressure.

As I recall, I had very little trouble in the very beginning, because my nose was so stuffy, I used a full face mask. That might have made a difference, as the pressure is spread over a larger area. I switched to a small nasal mask after I got my second machine set correctly.

You may want to also make an appointment with your Audiologist, and get an Audiogram and a Tympanogram, just to see where you are today.

That would give you more information when it comes to titrating your machine.

I know - I need the APAP for my low O2 levels at night (for my poor, recuperating brain) but I can't stand the dizzies the next day as a trade off! There's got to be a solution....

footprintsangel

Hi Friends I just wanted to stop by and say I am still working

with the people for my sleep mask and they told me it could

be awhile and use my old ones, I am looking around and knowing

something will soon happen.They are calling my doctor this week

again. Wrenn: my prayers are with You. To all the other wonderful

people here, My prayers are with You that Your week will go good.

Please have a take care of you week.

wrenn

Thanks so much for this information Blessings. My sister was diagnosed this week with severe apnea and it will be good to give her some good information. I don't want to mention the dizziness yet because she knows how much vertigo has impacted my life. I want her to get good and compliant with her cpap and then hopefully I will have some answers for her. I have 2 brothers and a sister on cpap now. I will get an appt. with an audiologist. thank you again. What great info.

Footprints, thank you so much for your kindness. I will be thinking of you and wishing for the best too. Take care ladies.

Blessings2011

footprintsangel - prayers that all will work out for the best for you!!! xoxoxoxo

wrenn - you are very welcome.... Do you have any other diagnosis for your dizziness besides BPPV? That usually causes rotary (spinning) vertigo. I've had that a few times..... NOT fun! There is a very simple test for BPPV, called the Dix-Hallpike test, where they lay you back quickly on a table and let your head dangle back. Then they turn it from side to side, looking for nystagmus so they can tell which ear canals (right or left) have the crystals (otoliths) embedded in them. (Nystagmus is where your eyes look like they are watching the cars of a freight train go past very quickly.)

The "cure" for BPPV is the Epley Maneuver, where you can kind of contort your body and head to make the crystals move out of the semi-circular canals. AND - I just found a new set of exercises developed by a doctor with BPPV, that look like they just might be more effective. I'll look for the link and send it to you.

The walking-in-a-canoe, or walking-on-a-waterbed feeling is usually associated with other kinds of disequilibrium. I know that was a dead giveaway for my friend with Migraine-Associated Vertigo. She had no headache, an occasional aura, but that feeling of walking on water... most of the time.

Have you ever seen an Audiologist before? Make sure you get both an Audiogram (chemo can cause hearing loss) and a Tympanogram. And ask about Eustachian Tube Dysfunction as a cause of your dizziness while using your CPAP.

Your sister could be like my DH who LOVES his APAP and never spends a night without it! His health has improved SO much, and he's never had any side effects at all.

wrenn

Hi Blessings, i saw an ENT specialist and nystagmus was there when she did the epley. It doesn't work that well for me to do it on my own but helps a bit. I did the audiology test and have tinnitis and moderate hearing loss. I do have the option of trying vestibular rehab but have put it off because it brings on dizziness. i have had vertigo for about 8 years and I only had one chemo treatment last year.

I too love my cpap. I sleep great with it and have no problems but would love to find out if anything related to it's use is influencing my vertigo. I hope you adapt to the machine soon. It can make such a difference to have restful sleeps. All the best to you.

Ginger48

hi Blessings- I was diagnosed with Obstructive Sleep Apnea about 2&1/2 years ago. It was the year I found out I had breast cancer and was BRCA2+. Then diagnosed with lymphedema, frozen shoulder and fibromyalgia. I was having trouble sleeping after all that and took the sleep test just to get a look at my sleep patterns. We were all shocked that I had sleep apnea.

I got my CPAP machine with humidifier and filters with a full face mask in may,2012 and have used it every night since. Gone was waking up feeling hungover and with a headache.

I change the distilled water in the basin every night and use wet ones wipes(in the red package) on the mask every morning. Wash out the tubing periodically.

I am having trouble finding a medical store that works with my new insurance. My old one does not participate. I am on my last face mask cushion so time is of the essence.

Sounds like you have found a good respiratory therapist. I hope it all gets straightened out for you. Sleep is so important to our health

Blessings2011

Oh, wrenn - I did Vestibular Rehab, too, for a while. The one thing ALL my dizzy friends had told me was "It will get worse before it gets better!" I quit for that reason. (I was such a weenie!!!) Now I am planning on taking a Balance Class, so at least I minimize my risk of falling and hurting myself.

Ginger48 - Wow, I'll BET you couldn't sleep with all that going on! For your supplies, have you tried Apria? That's the company Kaiser uses. I can go into the Kaiser sleep lab and try on any combination of headgear and masks, then I can order it through Apria. When my machine was defective, I took it to our local Apria office and met with a RT there to exchange and re-titrate the new machine.

http://www.apria.com/wps/portal/apria/home

Ginger48

hi Blessings- there is one about 20 miles from me so I will call to see if they take my insurance. Thanks for the info