The base of my tongue is very fat the CPAP does not work on me it won't keep it open
Emilie: Well... we shall see. I was originally diagnosed with obstructive apnea, and then "Central" apnea. I am now getting another machine "ASV" (adaptive servo ventilation"). Am not sure how it works, but is supposed to stop "centrals" (I hope)
It really will. I was diagnosed with mixed sleep apnea (OSA and CSA). I have an ASV machine. It’s going to breathe for you. For me, my brain doesn’t tell me body to breathe when I go to sleep and I takes shallow breathes. It forces air. It’s nice. I really love mine.
marvis Glad to hear that. I pick up my machine tomorrow. Thanks for the feedback.
The real difference between the CPAP and ASV is that ASV will adjust the amount of pressure on a breath by breath basis to get you to keep a steady pattern of breathing. If I don’t breathe (I hold my breath sometimes without thinking), it will literally force air automatically to get me to. I believe my tech told me that it monitors you for the first 45 minutes (my machine feels like 15 minutes) to establish your normal breathing pattern.
such devices wouldn't help.
That's what I figured. So ... I don't know why I'm scheduled for another sleep study with the addition of a mask/device.
So, you were diagnosed with central sleep apnea?
me either - maybe it's a combination? I'm not a dr, so double check, but I've always heard Centrals aren't about the airways = no CPAP
That's my understanding, Lynwood.
Emilie centrals aren’t about airways. It’s about your brain not sending the signals to your muscles to breathe during your sleep. Obstructive sleep apnea deals with your upper airway being blocked.
Cpap doesn’t work on centrals because it’s a constant airflow at one pressure. That’s why we get ASV machines. They change their pressure on a breath by breath basis. If you don’t breath for a few seconds the machine forces air to get you to take a breath
this is why I'm confused. The pulmonologist's assistant says "everyone starts out with a CPAP," even though it seems she knew/agreed that I have mostly central sleep apnea.
marvis That is my understanding. Question I have is how does machine know that I have stopped breathing?
Emilie because after your first sleep study where you are with no machine THEN you have a study with a cpap. After that, you get diagnosed with osa or mixed or whatever. If you’re diagnosed with central... you do a third sleep study with the ASV machine.
But why get a CPAP if it's known that I have central sleep apnea?
Willian my machine tells every inhale and exhale I do via my mask. I wear an amara view. It shows it on my machine. If it doesn’t register an inhale within a certain amount of time, it forces the air to take a breath
Emilie I’ve never had a CPAP. The only time I wore a CPAP was during my second sleep study because I was not diagnosed with what type of apnea I had at the time. I was never offered a cpap machine to bring home. I don’t know why you’d have a CPAP at home UNLESS you have developed central sleep apnea after you’ve been on CPAP for some time which can happen.
marvis So then it is somewhat mask dependent. I had used Amera View but could not get rid of leaks. I am now using AirTouch, and get no leaks, so presumably will still use the AirTouch with ASV.?
I don't know why I'd have one at home either, marvis. However, my issue is -- why don't they just do the next study with a machine that is best for central sleep apnea, rather than try a CPAP first, thus wasting time and money, and causing me more stress?
Also, about all this air pressure..... I've done mouth to mouth resuscitation on someone before. Seems to me that the force of the air would be quite high to push air into the lungs, seeing as how the brain has not signaled the diaphragm to pull in a breath. Is it forceful? Does it freak anyone out having that kind of pressure come at you?
Willian it’s not mask dependent. It’s going to work with whatever mask you use. The machine will detect your breathing regardless. You can change mask every night and change the setting on the machine to match what type of mask you’re wearing. It’s that advanced.
Side note: I get leaks with my amara view too but my RT said that’s normal. I’m seriously thinking of switching because the under the nose piece blocks my airway because I’m not a mouth breather.
Emilie they have to go through the progressions of showing failure for each therapy. To prove that ASV is needed and insurances also plays part in it. ASV is one of the final frontiers of PAP therapy.
Hung.... grrrrr..... I'm frustrated.
Yeh I hear ya, that’s one is a frustrating one, when patients coming in knowing that is could possibly fail.
Emilie, the pressure isn’t anything to me. My machine is set at a 10.0. It doesn’t wake me up at all. It isn’t forceful like you’re being gut punched with air.
Willian’t be so frustrated. You’ve literally been diagnosed with a brain disease and you’re getting a machine that is going to save your life. It’s exactly what Hung said. You have to go through these steps to show you can’t use CPAP therapy and they have to do a study with an ASV machine to see how your body reacts. I was frustrated too. I cried when I walked out of sleep doctor’s office after being told I needed a 3rd sleep study. But, it has saved my life. I’m only 30. I feel like a brand new person. This will pass and you’ll be happier for it.
Emilie In my case I did the home study. Ins would not pay for lab. Home study only ID Obstructive apnea so I was given a BiPap machine. After a couple weeks on the BiPap I was still experiencing problems so I call DR. I bring machine in and they do a data dump, and the data showed the centrals which were about 10 times the obstructive, so then I had to get an Echo-cardiogram, as there is a potential issue with heart and ASV. My echo-cardiogram was ok, so ASV machine was ordered... all of this in about a two month period. Tomorrow starts a new adventure.
I already have an issue with my heart. YAY. And apparently an issue with my brain. YAY. I've had grand mal seizures in my sleep, but they stopped in 2008. I'm on a heart monitor now. I was in the hospital over the New Year's holiday -- atrial flutter.
Oh, and the the EEG from years ago (I got this test because of the seizures) showed abnormal brain waves. Just ... yay for me.
Emilie I hear ya...I don't remember what the exact issue with heart and ASV is. Sleep DR ordered Echo. I then went to my Cardiologist and he threw in an EKG, and that I also needed a stress test, as I also have multiple issues with my heart. Guess all is well with heart (well... about as well as it can get).... Fun, fun, fun
Emilie The pulmonologist's assistant is incorrect. I started right with a Bipap because in my sleep study, the Cpap didn't help me but the Bipap did.
Thanks, Mayola. This is why I will call the doctor tomorrow. I just really need to cut time time and energy out of this circus and get to the right thing. Do you have central sleep apnea?
And just this morning I was still of the mind that I could get by doing special positional therapy, exercises, lose weight, and and maybe do a surgery (tonsils and adenoids out, harden part of my soft palate, etc.), but if this is central sleep apnea, well ... hell.
So, I haven't had a consult yet with the doctor yet after the initial sleep study, but I did obtain the results, along with another app't for a second study in which apparently I will use a mask and device. Here is what the sleep study interpretation is. I would like some feedback on what you think it means:
Lowest oxygen sat. was 82%. A total of "104 hypopneas, 75 central, 1 mixed, and 1 obstructive apneas." Mean duration of hypopneas was 10.4 sec., with some lasting 17.5 sec. Mean duration of central apneas was 10.6 sec. with some lasting 21 sec. Total respiratory index was high at 32.4 events/hr. During REM sleep, the RDI was 2.9 events/hr. The apnea/hypopnea index was 32.4 events/hr." Total sleep time was 335.5 minutes. Sleep architecture was abnormal. ... Patient did not achieve N3 sleep.
(That's most of the details.)
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Yeh when it comes to central Sleep apnea stage 2 (N2) is the disturbed sleep stage. I always find it weird that during REM it corrects itself. With obstructive sleep apnea it complete opposite.
What corrects itself during REM, Hung?
Central sleep apnea, or at least minimizes it. If you notice outside of REM your AHI IS 32.2 and in REM It drops to 2.9 events an hour.
If, out of the 104 hypopneas, 75 were central, 1 was mixed and one was obstructive, what were the other 27? Any idea? Why wouldn't they say? Is it because the doctor/test interpreter couldn't determine those?
You had 104 hypopneas. Then 75 central apneas. 1 Mix Apnea, and 1 obstructive Apnea. They are all different types of respiratory events.
Oh. I thought that I had a TOTAL of 104 hypopneas, of which 75 were central, 1 was mixed, and one was obstructive. I guess I have more reading to do.
(I"m also going to call the doctor tomorrow, because I'd really like his input on all this before my next sleep test.)
Gah... just looked up the definition of "hypopnea," which is just "abnormally slow or shallow breathing." Okay. Obviously, I had misunderstood that term. Thanks, Hung.
Emilie yeh no problem. Glad I can help. I generate those reports for Sleep MDs. I Just try to help us get a understanding of what we are looking at.
frustrated? YEAH, I'M FRUSTRATED. I've been dealing with other health issues since about 2000.... then two major surgeries and a severe car crash in 2013 that took 14 months to recover from. And I'm a single mom of two who BOTH have chronic and sometimes severe health issues. So, YEAH....dammit.....I've reached my limit and have no support system for my health issues -- except maybe some friendly people here.
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Thanks. I do feel that I'm at the end of my rope.
And I would like a glass of red wine right now. But APPARENTLY I'm not supposed to have that.
It is a tough adjustment, I’m sure all of us fought not wanting to do it one way or another. I still get bumps in the road. I come here and see positive so it’s helped me a lot.
Emilie girl, pour you 4 ounces and call it a night.
Heh. Thanks, marvis. I need a red wine and a good cry. By tomorrow, I will have gone to NINE APPOINTMENTS total for my two children and me. Nine. Like, this is all I'm doing. No time to look for another job (oh yeah....I'm between jobs....let's hope my savings can hold out for the mortgage). Honestly, um, my heart is so heavy, and no one "in real life" here seems to give a crap.
I just don't know how much more I can take.
It gives you rescue breaths. That's what mine is for as well. I quit breathing 126 times a hr. And it's because of my brain not telling me to breath
More than welcome
Hey Leesa, did anyone figure out what causes your central s.a.?
Just that my brain doesn't tell me to breath
I have mixed .... mostly central, some obstructive and some mixed and some Hyponeas.... cpap has been working great thus far
You really should be on ASV for centrals
Do you know of any other (non-mask) option for central s.a.?
Emilie there are some medications that can help CSA that are used to stimulate your breathing for people who can’t tolerate the machine. I don’t know how common they are though.
Emilie I do not.
Thanks. Masks freak me out, but since this seems so serious, I'm going to give it a go. Nonetheless, options are a good thing.
Just remember the hardest part is the first couple of weeks. Once you get used to it you will hardly think about it. The key is not giving up at the beginning
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CPAP is dangerous for CSA and can't be used. Bipap, APAP and ASV are used for CSA. My son has primary Central apnea, hypoventilation, hypoxemia and periodic breathing and just had a sleep study Tuesday night with bipap and it almost completely stopped his events.
Zelda that’s not correct. BIPAP and apap do not treat CSA. ASV and S/T is used if EF is low.
Was it a home sleep study that showed central? Or in a sleep lab? My home test showed centrals but I was told that it is not very accurate at distinguishing between central’s and obstructive so the best way to see if it was actually OSA or central was to try a CPAP. Or I’m sure the sleep lab tests could determine it also.