CPAP USERS - LET'S TALK!

footprintsangel

I got another letter and paperwork, I am going in to the sleep doctor

and find out, why I am waiting so long and I have your  phone numbers

ready to call, my filter are so old and I keep rinsing them, My mask is so

worn it leaks all over and then I put it on more and then I don't sleep cause

the level goes down. My prayers are with You all, may You find help and

get what You need. Take care, footprintsangel

 

Blessings2011

Oh, ladies... it's been so long since I've updated this thread!!! SOOOO SORRY!!!!!

I finally got in to see my ENT (the vestibular specialist) and I took all my research on "alternobaric vertigo" with me.

He absolutely agreed that somehow the APAP is blowing air into my very defective Eustachian tubes, and creating different pressures in each middle ear, making me sick and dizzy.

He told me he wanted me to see my Pulmonologist, and when I said that "NOBODY sees the Wizard, he's the Man Behind The Curtain, and all we can do is see the Sleep Lab Techs", he laughed and said he would present my case to him. Plus, he has dozens of colleagues all over who would LOVE to see me and he could arrange for that.

Surprise, surprise, the Wizard called me and said he wanted to see me right away! After explaining my Traumatic Brain Injury last June, and the fact that my oxygen sats were 89% during my sleep study, he ordered an overnight Oxygen Saturation Test. Well, guess what? My O2 sats at night are 79%!!!!! No wonder I'm waking up so exhausted and stupid every day.

He ordered an oxygen machine for me, and what I got was one of those huge beige oxygen concentrator machines like they use in nursing homes, with a filler on top to fill up cannisters. (Which is pretty stupid, since I CAN breathe when I'm awake.) It's just that at night, my brain no longer tells my body to breathe, which is why the oxygen levels go so low.

It sounds like a Greyhound bus idling next to my bed, and for the first few nights I wore earplugs, but then I got up in the middle of the night and put it in my bathroom, wound the hose under the rug, under my furniture, over my closet door, over my bedroom door, and over to my bedside. I close the bathroom door (the little room the toilet is in) but open the window for ventilation.

All I can use is a nasal cannula, as I am on two liters. That's not enough for an oxygen mask, and I have had a few nights where my nose was too stuffy for the prongs to do any good. I put them in my mouth, but they made my mouth as dry as the desert.

The medical supply company, which I will not name, but looks like Apr*a, has been horrible. I did not get my humidifier with my concentrator. I know I need one, as I blow out buckets of blood in the morning from a bloody nose, even using Ayr.

BUT- the good news is that after almost three months of hibernation, where I would sleep for 12 hours, get out of bed in the afternoon, work on the computer until DH said dinner was ready, I can now wake up in the morning, get dressed, and be busy ALL DAY!!!!! And NO dizzies!!!

We've had a series of family crises. I've been in and out of hospitals and nursing homes trying to do medical management for my sister and my father-in-law. I have completely cleaned out and scrubbed a hoarder's house. I feel like I got my life back.

It's amazing how important oxygen is to the brain!

I know the Pulmonologist wants me to hook up my oxygen machine to the APAP, but I have to figure out how to do that and not have the forced air go straight to my middle ears.

Anyway, still waiting for the humidifier and extra hoses so I can hide the okie-technology set-up I have over doorways.

Also, I am thinking of buying a portable oxygen concentrator. It will be very expensive, and insurance won't cover it. But I can't take this thousand-pound machine with me when DH and I travel. And with continuous O2 (instead of pulse-dose) I can't use batteries. Bummer. I need it to last all night long, not just the hour or two they provide.

How is everyone else doing with their CPAP, APAP, BIPAP, and O2 machines?

wrenn

wow, what a nightmare. I hope the docs help you find a solution soon. It is interesting to hear about the pressure and dizziness. I have lowered my pressure from 14 to 11 over the last while and feel a bit better but still dizzy. My AHI has gone down with the lower pressures so that is good.

My sister just started on cpap and already feels much better. She did overnight oximetry with cpap and never desatted. She loves her cpap.

Wishing for a lighter, quieter solution for you blessings. Take care

Ginger48

wow, Blessings, you have really been through a lot! I am glad you are getting to the bottom of it.

My CPAP is working fine. I am still struggling to find a supplies provider that works with my insurance.

IndigoMont11

Hello all. Blessings, good grief! I'm sorry this has been such a rough experience. It will be a year around April 1 that I've had my APAP machine. I'm doing okay. Usually I can sleep pretty well through the night, and I've gotten to where the hose doesn't bother me too much any more. I am sorry that I didn't get back on after awhile, and didn't share what I do to clean my machine. I was told to use either Ivory dish soap or baby shampoo to wash the nasal pillows, hose and tub. Nasal pillows and tub get washed every day, hose once a week. They made a big deal of checking the air filter once a month, but told me most likely I would only need to replace it 2x a year, which has been the case for me. My headgear came with pads for the straps that fasten with velcro, which are better than nothing at all on the straps, but they still leave marks on my face that take awhile to go away, and my cheeks are redder all of the time (I have mild rosacea, but I can tell where the straps were). So I'll check out the website you all mentioned, to see if those look better.

About the techs - while they were all nice enough, they have had the attitude that this is your health, so unpleasant or not, you have to get used to it. While that's true enough, of course, it has aggravated me to hear that coming from techs who don't understand firsthand what it's like to have apnea and need this contraption on your face every night. Even if you don't have apnea, not getting a good night's sleep just sucks. It helped to meet a tech who's a little older than I am, and who's been using a machine for awhile himself.

Some nights I still long for the simplicity of, well - just going to bed!

I'm starting to look into recon, and I'll have to ask about using the APAP in the hospital. After I had my BMX in 2012, they kept coming in off and on all night long because even with supplemental O2, my sat rate would keep going down. This was before I was dx'd with the sleep apnea.

Hugs ladies!

wrenn

Indigomont11, there is a site where members are really helpful with tips to make cpap more comfortable. I have learned a lot from them. It is cpaptalk.com I learned from them about pad a cheeks to protect your cheeks from marks. As far as the hose goes I found a 'hose buddy' to really help keep the hose out of the way if you toss and turn a lot.

My sister recently started on cpap and is comfortable with good results already just because of a few tweaks to make things more comfortable.

One of the bad habits I learned from the site is how long people go without cleaning things. I top up my humidifier tank daily but only wash it with soap and a vinegar rinse once a week. I clean the mask cushion daily with baby wipes and wash it with soap once a week and my poor hose doesn't get cleaned often. :-)

I am really liking the Eson mask as far as comfort goes.

I hope you are feeling better Blessings. Take care everyone.

Blessings2011

Hello, Sleep Apnea Sisters!

Oh, my gosh... I can't believe it's been so long since I posted here.... SO many changes!

WARNING - LONG HONKIN' STORY...

To recap, I had a Traumatic Brain Injury from a fall in June 2014. I spent the next few months getting home testing for Sleep Apnea, got a loaner machine, got several defective APAP machines, and went thru Vertigo Hell while trying to wear a nasal mask.

Then I had an overnight oxygen saturation test showing my O2 sat levels dropped to 79% at night. I immediately went on supplemental oxygen instead of the APAP at night. It still didn't really help all that much, and I finally hid it in my toilet room to lessen the noise - like a Greyhound Bus idling next to your bed at night. I called the machine Big Bertha - it was the same one they use in nursing homes.

Finally, I hooked up the oxygen concentrator to my APAP and did a 2 liter bleed throughout the night. I was VERY compliant with my APAP, until it started to malfunction again. It was like I was hooked up to an erratic ventilator that pulsed and didn't let me breathe naturally.

By 2015, I had several pulmonary function tests done, and the Pulmonologist and the Neurologist decided to send me to a hospital in the Bay Area for overnight testing. Unfortunately, the Neurologist wrote the wrong orders... this was to be a BASELINE study, and instead he wrote me up for a TREATED study. So I wore a CPAP all night. Results showed that I did not need supplemental oxygen, that my AHI was around 8, and that I never got into deep slow-wave sleep all night. I got a second Pulmonologist at the hospital to work with me.

So then, back at home, I found myself sleeping 10 - 12 hours per night, waking up totally groggy, staying in my jammies, napping for several hours, then going to bed and starting all over again. I think I slept through much of 2015.

I got a new local Pulmonologist, who reviewed my history and decided that I was overtreated. He asked if I would go back to the Bay Area for another overnight test, this time with no CPAP. I agreed. The results were even better. My O2 levels stayed above 90%, and my AHI was 5, which is normal. 

But again -  I never reached that deep "slow-wave" sleep level. Both he and the Bay Area Pulmonologist decided that my head injury had affected the sleep center of my brain, and that the machines were doing more damage by keeping me awake. So they took me off all of them, and boy, do I sleep better!

Their next suggestion was to be tested for narcolepsy or something called Idiopathic Hypersomnia. To do that, I would need to go BACK to the Bay Area (3 hours one way) spend the night in the Sleep Wing, wear a CPAP, and the next day, stay hooked up to all the wires, so they could do a Sleep Latency test on me. Basically, they'd wake me up at 5:30 a.m., let me eat breakfast, read, watch TV, play on the computer, etc., then every two hours, I would have to turn the lights out and try to take a nap.

Are you kidding me? After a night with no sleep (thanks, CPAP) of COURSE I'd fall asleep again. They would measure how long it took me to fall asleep (immediately), how long I would sleep (until they woke me up 20 minutes later) and whether or not I had reached REM sleep. (I probably would.)

In discussing this with the docs, I asked both of them what the treatment would be if I failed/passed the test. They both said "stimulants." So I said "You'll put me on speed, and I'm not willing to do that." They both agreed that the meds would be nasty, and we all decided that since this excess sleepiness does not affect my quality of life too badly, it would be better to just learn to live with it, which is what I have done.

DH, however, is still the Poster Boy for APAP. He won't even take a nap without it on.

One thing I did do before I quit the APAP altogether was to make homemade mask liners. They REALLY helped stop mask slipping, drooling, sweating, etc. I got a better and more comfortable seal. I downloaded the pattern from the Internet, and copied it onto card stock for durability.

Then I went to Walmart and bought the biggest mens' 100% cotton knit undershirts I could find. I could have gone to the fabric store, but I wanted 100%, durable cotton knit. And the Tshirts were WAY cheaper! I washed and dried them first. Then using the pattern, I cut out as many liners as I could.

You can buy mask liners online, but they are to be used once only, and cost around $1 each. I can make dozens and dozens this way. (They are only for full-face masks, though.)

Here is the pattern:

http://montfordhouse.com/cpap/diy-cotton-mask-liner.pdf

So how are all of you faring with your APAP/CPAP/BiPAP machines?

Have you seen any improvement since you have been wearing them?

Hope all are doing well out there....

Ginger48

Wow, Blessings; you have been through so much! I am still faithfully using my CPAP and have found that Icannot sleep without it. When our power goes out, I am miserable. Thanks for the pattern. I will check it out.

Blessings2011

Hi, Ginger48!

SO glad your CPAP is working out for you. Your body thanks you, too!

DH was invited on a weekend "guy trip" to a horrible, run-down, ancient, filthy cabin in the middle of nowhere. He was worried about his CPAP, and I was too... all I could think of was the layers of dust and mouse droppings he'd be breathing in all night.

He researched it and found that his particular model had battery backups. If you don't use the humidifier, they last for 8 hours. They weren't cheap, but were well worth it on the trip.

Come to find out, they strung a long series of extension cords to a house down the road for electricity. He was able to use his CPAP AND the humidifier during the night. He used the battery back-up during day naps, when other electrical stuff was being used. He was the only one who didn't wake up coughing and sneezing, with a sore throat. (ugh)

You might check and see if your machine has a battery backup available for those power outages.

Sunny_Girl

Ola fellow Cpap (et all) users!

Good to hear the cleaning tips and thanks for the pattern. I have the Fischer Paykel that only covers my nose (looks like the link on the previous page).

We haven't done any camping for years because of a move and not having a motor home. We are looking into a trailer or camper & as long as there are hook ups or a generator I'll pack my little Cpap machine and hit the road! Good to hear your husbands trip worked out well.

Happy evening! Patty

Blessings2011

Hi, Sunny_Girl!

Hear ya go.... teensy tiny CPAPS that are battery-operated.... just in case you don't have hookups....

http://hdmusa.com/products/?utm_source=bing&utm_medium=cpc&utm_campaign=Z1%20AUTO&utm_term=%2BCPAP%20%2BBattery%20%2BPowered&utm_content=Z1

DH has a full-size Phillips Respironics Remstar that has a battery pack. I think he bought two so he could use one while the other charged. Of course, if you don't have hookups or a generator, and you're boondocking, not sure how you would recharge the battery....

cliff

I had trouble believing I had sleep apnea even after the test. till I was in the hospital and my son stayed with me over night, he said every once in a while, I would slow down breathing, stop, and jerk around, then start breathing again. it was hard to use the mask at first, but now it stays on all night. I also have congestive heart failure, and it helps improve that. one problem, what do you do when you have a cold?

Ginger48

Hi Cliff-

I also was so surprised that I had sleep apnea. Not sure how people handle that.Luckily, I have not had a cold since I got my cpap 5 years ago. Today, I woke up sick. It may be strep. Hoping any cold symptoms stay away.

cliff

my cpap has a box inline with the power cord, its a 12 volt power supply. I can make up a cord to run it off a battery or in a vehicle check your local electronics hobbyist or pro for advice..

Ginger48

wow. I have not heard of that. My box is 5 years old. I wonder if it has that?Have lost power a few times and could not sleep at all. We ended up buying a generator.

cliff

a computer UPS, uninterruptable power supply would also work, one with enough battery capacity.

Blessings2011

Wow - I just popped back on here after referring a newly-dx'd sister to the forum... and here was my CPAP thread!

Update: I had ANOTHER overnight sleep study at a big hospital in the Bay Area, and this time... NO sleep apnea, and overnight O2 sats are normal.

Test results did show, though, that I still do not get any slow-wave or restorative sleep at night.

The CPAP/APAP machine function just got worse and worse. It never coordinated with my normally slow and shallow breathing pattern, and it always felt like a leaf blower on full blast in my face. The Sleep Lab techs were useless, and the medical supply place was just plain rude. (The smart Respiratory Therapist that I liked left.)

Another wrinkle: this year, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS) - a genetic disorder of the collagen and connective tissue in the body. There are also neurological complications that involve body functions (including the heart) and something called Mast Cell Activation Syndrome that mimics the worst allergy attack ever. Needless to say, sleep apnea or sleep apnea symptoms are common.

I found that using a contour pillow aligns my neck, and straightens out my compressed trachea. That allows me to breath so much easier. I still have issues with neurological functioning, but it is what it is. I was able to turn in my CPAP/APAP machine, along with Big Bertha - the oxygen machine I had at my bedside for forever. (She sounded like an old Greyhound Bus idling next to me all night. I even put her in the bathroom and ran a long hose to my cannula, but man, she was LOUD.)

So I just wanted to tell all the CPAP/APAP users here to keep persevering for answers if the machine doesn't seem right to you. Wishing you all the best....

footprintsangel

Thanks Blessings2011