Re-Diagnosed, Already in a Dilemma. Advice?

[FeistyWifey]

The Forum helped out my husband Silverthreads several years ago and now I'm here for advice for me. I am newly diagnosed (last time was probably in 2000. The wind tunnel effect and no humidifier were my waterloo). Tried my husband's pulmonologist who said if I thought I had apnea, I didn't. He said it would not cause choking and gasping and collapsing airway, heavy chest, tired heart, etc. So I went to an Internist/Sleep Doctor who said I could not possibly have Centrals plus OSA because I am a woman, because Centrals come from Neurological Disorders/Diseases and because Centrals are so rare. I asked what would he do if my sleep study showed Centrals? He said, I'd have to do an in-lab study to titrate you and you'd need a different machine. (I wanted the in-lab study. Why do double work? Do it right the first time.) So after one botched home study (the tech didn't show me how to use the equipment properly and the sensors never worked all night) the second study I couldn't sleep for worrying about the sensors and because, well, at home I have somebody to see about and a cat. So I slept when I could and lay there trying to fall asleep the required duration (6 hours). The doctor had said that at home is as good as in-lab and that I couldn't possibly have worse apnea some weeks than others, but I do. Some weeks I dread going to bed because it is suffering to choke, wake, gasp, struggle to breathe, feel my airway collapsing, and have arrhythmia that makes me weak throughout the days. Other weeks, I seem to do better. I try to use an incline pillow but I snort myself awake and have problems anyway. So now I get the results. One half page of graph. Barely qualified for a machine. He ordered an Autoset and wants either the Respironics with modem or the S9 with card. He said they would detect Centrals. I don't see that. I want a full data machine that I can use to help myself and I want the right machine the first time. My insurance deductible is sky high and then I still have to pay 10% of everything. So now I"m already in the ditch for 10% of two sleep studies and the machine rentals for those two nights plus some other charges. These are all I know: Obstructive 21. Mixed 0. Centrals 10. Total apnea 31. Apnea index 2.4. HYPOPNEA (their caps) 33. Total Apnea and Hypopnea 64. REI 5.0. SaO2 @ Nadir 82%. Time at or below 88% 0:00:55.0. At 9 p.m. the Epoch was 241. At 11 p.m. the Epoch was 481. At 1 a.m. it was 721. At 3 a.m. it was 961. At 5 a.m. it was 1201. At 7 a.m. Epoch was 1441. (I don't think I was even in bed any longer at that time.) On the half-page graph, Cn.A =5 occurred 2 times either end of the second period, 1 time in the 4th, and the rest of the Cn.A were in the 5th period.
Ob.A +5 occurred twice in the first period, twice in the second, a cluster of times (jammed too close on the graph to count) in the third, one toward the end of the fourth. Hyp occurred a lot in the first and second periods and then only once in the fourth and six in the fifth. If anyone has been able to wade through this post and is still willing to bear with me and give me your thoughts, please do. I know my apnea is worse than this shows and am fearful that even an in-lab study may miss how bad it gets at its worst. I cannot afford to throw money at a machine that is inappropriate. Is an Autoset appropriate for a person who has some Centrals, maybe more than a third of her apnea events? The nurse said if I was not getting better they would up the pressure and go by the AHI. She said if the AHI doesn't get better they would crank it up and if they cranked it up to 20 and my AHI got worse then he usually would send me to a lab for another study. That just sounds crazy to me. She also said he uses the Autoset because he doesn't know what pressure to set it if someone has an at-home study. I said that's why I needed an in-lab. She got frustrated and said, Then why didn't you have one in the lab the first time? And I told her because he said I should do it at home. Is this me being ungrateful and ignorant? If so, please be frank. I am definitely motivated and serious about treatment. My overall health is deteriorating and treatment will help nearly everything. Would you fight for something more, and if so, how to go about it? Would giving the autoset a few months' trial help me get an machine that better treats Centrals? If so, which autoset would be better for someone who wants to learn to scrutinize my own data? Thank you for your patience and any tips. Best wishes for all of you. P.S. the machine, headgear, etc. below are for my husband. I haven't refreshed my memory on how to delete that yet. I don't have any machine at this point, of course.

[Demerit]

In order to qualify for an asv through insurance your central apneas need to be greater than 50% of your total apneas. I don't see this in the numbers you posted. Most of the time centrals show up when someone is on a cpap or bipap machine during a titration. Some folks that have a few centrals do well on auto pap, while others throw more central apneas and need to move to the asv. I'd ask for an in-lab titration to see which category you fall under. One night of inconvenience going to the lab may save you money in the long run.

[Pugsy]

Get this machine if you are going to get a machine.
Make sure you get the "for Her" model as it has a special apap mode for women. You may not need it but it's better to have it and not need it than need it and not have it.
The regular AutoSet doesn't have the second APAP mode.

This is the very latest machine from ResMed.
AirSense 10 AutoSet for Her
the older model was the S9 AutoSet.
These machines do indeed flag centrals so if you have them the machine will flag them.
It also has the SD card so both you and your doctor can monitor the therapy. Software is free and easy. Check out my signature line and SleepyHead now has a version that will work with the AirSense 10 models.
This model
https://www.cpap.com/productpage/resmed ... idair.html

Read this thread as it talks about the different features a bit especially the part about that special apap mode for women.
viewtopic.php?f=1&t=99984&st=0&sk=t&sd= ... e+released

From what you seem to say about the sleep study you had there weren't enough centrals to warrant that high end ASV machine. Unless you start throwing centrals because of the cpap pressure itself (10 to 15% of the people who start cpap will do that depending on what source you read) you don't have central sleep apnea.

Up to you if you want to at least try the AutoSet for titration or want to push for in lab titration.

[Janknitz]

Some weeks I dread going to bed because it is suffering to choke, wake, gasp, struggle to breathe, feel my airway collapsing, and have arrhythmia that makes me weak throughout the days

No doubt you have apnea but the reason that this only happens "some weeks" is that this may not be apnea, but reflux. However, the reflux may be occurring BECAUSE of the apnea--the struggle to breathe causes you to try to take a very deep breath--and that has the effect like a vacuum cleaner of sucking the contents of your stomach up into your airway--choking, gasping, struggling to breathe.

It goes hand in hand with apnea, but what I'm trying to say is that you may have TWO issues--apnea and some reflux. CPAP may or may not stop these symptoms on its own, you may need to have yourself evaluated for GERD (gastroesophageal reflux disease) or Laryngeal Reflux and treat that accordingly too. They will prescribe proton pump inhibitors like Nexium, but you can do some self care, too:
1. Don't eat within 3 hours of lying down
2. Be aware of triggers. Commonly sugar, starchy foods, alcohol, and dairy are triggers.
3. Elevate the head of your bed (you already mentioned a wedge pillow)
4. If you are overweight, that's a contributing factor.

[Julie]

Very many of us have a handful of centrals just on falling asleep and then just before awakening... nothing to worry about at all, only if you have lots of them throughout the night, especially in large clusters, should you question anything.

[FeistyWifey]

In order to qualify for an asv through insurance your central apneas need to be greater than 50% of your total apneas. I don't see this in the numbers you posted. Most of the time centrals show up when someone is on a cpap or bipap machine during a titration. Some folks that have a few centrals do well on auto pap, while others throw more central apneas and need to move to the asv. I'd ask for an in-lab titration to see which category you fall under. One night of inconvenience going to the lab may save you money in the long run.

Demerit thank you. I have overreacted. I'm very thankful you wrote with this info on needing to have 50% be Centrals to need ASV (or BiPap I'm thinking but will check further on the site).

[FeistyWifey]

Pugsy, you took so much time and energy explaining all this to me. Thank you so much. I see now I jumped the gun and should have taken time to read all the latest info on the site and get educated before panicking. I'm going to take every bit of your advice. I owe you big time. Am printing this and the info from the links. Bless you....

[FeistyWifey]

Some weeks I dread going to bed because it is suffering to choke, wake, gasp, struggle to breathe, feel my airway collapsing, and have arrhythmia that makes me weak throughout the days

No doubt you have apnea but the reason that this only happens "some weeks" is that this may not be apnea, but reflux. However, the reflux may be occurring BECAUSE of the apnea--the struggle to breathe causes you to try to take a very deep breath--and that has the effect like a vacuum cleaner of sucking the contents of your stomach up into your airway--choking, gasping, struggling to breathe.

It goes hand in hand with apnea, but what I'm trying to say is that you may have TWO issues--apnea and some reflux. CPAP may or may not stop these symptoms on its own, you may need to have yourself evaluated for GERD (gastroesophageal reflux disease) or Laryngeal Reflux and treat that accordingly too. They will prescribe proton pump inhibitors like Nexium, but you can do some self care, too:
1. Don't eat within 3 hours of lying down
2. Be aware of triggers. Commonly sugar, starchy foods, alcohol, and dairy are triggers.
3. Elevate the head of your bed (you already mentioned a wedge pillow)
4. If you are overweight, that's a contributing factor.

Janknitz, thank you for these thoughts and tips. No, I've been evaluated for reflux with endoscopy and am not overweight. At this time, that's not one of my problems but I do keep in mind that it has been in the past (when I was overweight and on certain meds) and that I need to guard against it in future. I have a good G.I. Thanks much again.

[FeistyWifey]

Very many of us have a handful of centrals just on falling asleep and then just before awakening... nothing to worry about at all, only if you have lots of them throughout the night, especially in large clusters, should you question anything.

Julie, my ignorance is global! I really should have learned as much as possible before asking for help. Thank you for your patience!

[Julie]

But this is how you're learning, we're all doing it together, so you're in the right place.