“Failed” Cpap Machines, doctor says he doesn’t know what to do.

[Grapefruit22]

Earlier this year I started snoring and it bothered my husband so I went to a sleep clinic and they did 2 sleep studies and didn’t listen to anything I said. The first study was without a machine and they said that I have hypopneas so needed a second study. The second sleep study was with a cpap/bipap machine, the machine showed many central apneas and many more hypopneas. The oxygen didn’t improve during the titration study it drops to 85% on both studies. They said I had to order a bipap through their company and they would see me again in 3 months. ( I was unable to ever get ahold of the medical company and they never returned any of my voicemails or calls )

I went to a second doctors office where I saw an actual doctor, who is a pulmonologist and neurologist. They had me do 3 sleep studies these studies said my oxygen dropped to 85-88%. The office said I “ failed “ the cpap bipap test and had to have an ASV test, I was told I then failed the ASV test as well. None of the tests provided improved oxygen levels or improved hypopnea or central apneas. The doctor in the follow up said he has never had a patient ever in all his years have problems with the pap machines and he didn’t know what do to. He recommended just buying the “ expensive ASV “ and seeing what happens. He diagnosed it as central apnea. But had no answers as to why or what’s causing it or how to fix it. I asked for more testing and he said there is no other testing.

* My snoring stopped after 2 months because I purchased a bed wedge.

* I do not have any day time symptoms of any of this. I have a busy life volunteering, going out with friends, house work, pets etc.

Each time I had a sleep test with the pap machines I was left sick for a week and having to cancel volunteer work and plans with friends. I had crazy painful migraines, pain in my ears with pressure in my ears and head, dry bloody nose, chest pain, struggling to breathe properly and taking very short breaths. Light headed and dizzy, balance issues. My Rosacea flared up SO badly the first Pap test I had and has not cleared up since then.

I’m concerned about buying this expensive machine that had no positive affect on my oxygen levels or hypopneas or central apneas? I don’t know how or why I went from just hypopneas to all central apneas? I’m not sure at all where to go from here… We also don’t have 3,000-4,000 to just spend on a machine that makes me sick and doesn’t improve my oxygen levels..

The doctor just keeps saying I’m going to have a stroke and die.

What do I do from here?

[chunkyfrog]

. . .
didn’t listen to anything I said.
. . .

What were you saying that they did not acknowledge?

[zonker]

What do I do from here?

you come here where we can, hopefully, help you.

did you get a copy of the sleep tests? these are yours by law. (i'm assuming you're in the united states.)

and did they write you a prescription for a machine?

we need to see that sleep test to see if you really need an asv or even a bilevel.

other, smarter folk than me, will be along shortly with other advice as well.

good luck and welcome to the zoo!

[Julie]

Were they clear about trying to back-sleep vs side sleep to bring down your hypopneas that usually are worse if back sleeping? There are ways to keep from doing it.

[Grapefruit22]

. . .
didn’t listen to anything I said.
. . .

What were you saying that they did not acknowledge?

They kept saying I cannot drive because I would be extremely tired and not be able to concentrate while driving. I told them I have no issues driving at all, I do not get tired while driving or during the day. They wrote things that were not true about how I felt during the day. I kept trying to explain I could not use a full face mask because I have rosacea that I had just gotten into remission, they made me use a face mask anyway, that was also too big for my face and caused a massive Rosacea flair and skin infection. Which I’m still trying to fix 4 months later. I also have some sort of sinus inflammation issue, I explained to them that it doesn’t have a diagnosis, because the sleep clinic was also an allergy place but they disregarded it. I told them how I felt after the sleep titration with the pap about being so sick and having to recover for a week and the lady said “ oh that’s so weird, we will just get this ordered for you anyways” * This was just the first office.. I never even saw a doctor at it…

[Grapefruit22]

What do I do from here?

you come here where we can, hopefully, help you.

did you get a copy of the sleep tests? these are yours by law. (i'm assuming you're in the united states.)

and did they write you a prescription for a machine?

we need to see that sleep test to see if you really need an asv or even a bilevel.

other, smarter folk than me, will be along shortly with other advice as well.

good luck and welcome to the zoo!

I am in the US yes, I was not given a copy or access to the actual results but I might be able to try and get them. I only got the electronic copy of “faxed notes” to my primary doctor.

[Grapefruit22]

Were they clear about trying to back-sleep vs side sleep to bring down your hypopneas that usually are worse if back sleeping? There are ways to keep from doing it.

The doctor I spoke to said I need to sleep on my side only, which I typically do at home with no issues. It was hard to at the test with all the wires but they also kept coming in during the sleep test telling me to sleep on my back. The doctor said I need to sleep with tennis balls in the back of my shirt… which seems possibly dangerous?

At home I seem to have zero issue sleeping and staying on my side. I use my bed wedge and wake up rested and go off about my day around 7am. My husband said that I do turn from side to side in my sleep periodically but he does not notice anything else that would be concerning.

[ozij]

The doctor I spoke to said I need to sleep on my side only, which I typically do at home with no issues. It was hard to at the test with all the wires but they also kept coming in during the sleep test telling me to sleep on my back.

They were trying to see the worst case scenario - which they have to.

The doctor said I need to sleep with tennis balls in the back of my shirt… which seems possibly dangerous?

A common recommendation, based on the reasoning that attempting to sleep on your back with the tennis balls will cause such discomfort that you will wake up an turn over to your side. This waking up, while far from optimal, is better than sleeping on your back and desaturating.
Which dangers do you fear?

* My snoring stopped after 2 months because I purchased a bed wedge.

Sounds to me as good as tennis balls.

At home I seem to have zero issue sleeping and staying on my side. I use my bed wedge and wake up rested and go off about my day around 7am.

In other words, your sleep at home may have far less desaturations than your sleep in the lab.

Two ways of checking that out:
1) Ask your PCP for a full night's recording of your oxygenation. Professional recording pulse oximeters are reliable and expensive - the ones you can buy relatively cheaply are not reliable enough.
2) Have a home sleep study - it will give you information about sleep, position and breathing and oxygenation under your usual sleep conditions.
If the sleep lab recommended you don't drive, you may want to have the info from those at home tests as proof that your sleep disordered breathing is not as bad as the lab reports.

I’m concerned about buying this expensive machine that had no positive affect on my oxygen levels or hypopneas or central apneas? I don’t know how or why I went from just hypopneas to all central apneas?

Some people respond to Continous Positive Air Pressure therapy with treatment emergent central apneas.
Snoring (which you report appearing suddenly) is a phenomenon caused by obstruction in your airway.
Normally - for the majority of people - CPAP therapy keeps the airway from obstructing.
Central apneas are not obstructive phenomena, they are an indication of dis-regulation of your breathing system caused by the CPAP. This dis-regulation makes you stop breathing without an obstruction being the cause.
I would wait with buying an ASV till after I had a home sleep study with the wedge.
You may find out that the wedge solved your problem. Alternatively, your pressure needs with the wedge may be far lower, and CPAP therapy may be easier.

Should it turn out that you still desaturate with the wedge, there are alternatives to full face masks.

[Janknitz]

You mentioned a "sinus inflammation issue". Is that cleared up now? Does the wedge pillow help that?
Do you have skin allergies that flare up your rosacea (also an inflammatory reaction) with contact with certain materials (i.e. silicone) or was it the stress from the testing? There are cloth masks and masks that only minimally touch your nares, if it turns out you do need CPAP.

I agree that an overnight blood oxygen monitoring would be a good idea to see if you may need oxygen supplementation, with or without a machine. Was that degree of desaturation picked up in your first sleep test where they only noted hypopneas?

[Grapefruit22]

You mentioned a "sinus inflammation issue". Is that cleared up now? Does the wedge pillow help that?
Do you have skin allergies that flare up your rosacea (also an inflammatory reaction) with contact with certain materials (i.e. silicone) or was it the stress from the testing? There are cloth masks and masks that only minimally touch your nares, if it turns out you do need CPAP.

I agree that an overnight blood oxygen monitoring would be a good idea to see if you may need oxygen supplementation, with or without a machine. Was that degree of desaturation picked up in your first sleep test where they only noted hypopneas?

No I still have the sinus inflammation when I lay down, the doctor told me to use saline nasal spray before bed, it sort of helps for a short period of time. Then he prescribed allergy nasal spray that doesn’t seem to do anything at all after using it daily for weeks. I don’t have any allergy’s that I am aware of, I went to an allergist and he refused testing saying that people in their 40tys do not get allergies. He prescribed some sort of steroid spraying machine for my nose which causes my nose to bleed so badly while using it and the skin turned red. I stopped using it immediately and he never followed up or did anything.

The first cpap test I had, was a full face mask that didn’t fit, it hung down off the end of my chin. My face was red and wet when the test ended, my rosacea flared up and was bleeding a lot and crusty. The second sleep place used a nasal pillow I think they called it? I had a lot less problems with my rosacea with that.

The first test without any machines, the plain sleeping test was 85% oxygen, the test with cpap/bipap was also 85%. * I am still trying to get access of the tests from the newer office.

[Grapefruit22]

This waking up, while far from optimal, is better than sleeping on your back and desaturating.
Which dangers do you fear?

Two ways of checking that out:
1) Ask your PCP for a full night's recording of your oxygenation. Professional recording pulse oximeters are reliable and expensive - the ones you can buy relatively cheaply are not reliable enough.
2) Have a home sleep study - it will give you information about sleep, position and breathing and oxygenation under your usual sleep conditions.
If the sleep lab recommended you don't drive, you may want to have the info from those at home tests as proof that your sleep disordered breathing is not as bad as the lab reports.

Some people respond to Continous Positive Air Pressure therapy with treatment emergent central apneas.
Snoring (which you report appearing suddenly) is a phenomenon caused by obstruction in your airway.
Normally - for the majority of people - CPAP therapy keeps the airway from obstructing.
Central apneas are not obstructive phenomena, they are an indication of dis-regulation of your breathing system caused by the CPAP. This dis-regulation makes you stop breathing without an obstruction being the cause.
I would wait with buying an ASV till after I had a home sleep study with the wedge.
You may find out that the wedge solved your problem. Alternatively, your pressure needs with the wedge may be far lower, and CPAP therapy may be easier.

Should it turn out that you still desaturate with the wedge, there are alternatives to full face masks.

I have pain neck issues,(the neck pain started after I stopped taking birth control and does not seem to be related to any sleep apnea) it would seem tennis balls wouldn’t be safe with that? I will definitely continue to use the bed wedge.

When you say to ask my PCP for the oxygen test, would that be my regular doctor or the sleep doctor?

The sleep doctor refused home testing. So I won’t be able to do one at home.

- The sleep technician from the first sleep place kept telling me what my symptoms were instead of listening to me and what my actual symptoms were, which I had none. They kept saying you can’t drive because you are too tired and I kept saying I am not tired I have no issues driving. Even when I filled out the forms I checked off NO to all the questions.

- I used the bed wedge at the new sleep tests I only know my oxygen was 88% on the ASV machine but not what the other tests said.

* Is it possible that this doctor has diagnosed me as central apnea based off the machine causing central apneas and not an actual central apnea diagnosis? He has refused to do any further testing to check for neurological issues to cause central apneas. He is also a neurologist and his notes to my doctor recently said he has never had a patient with these issues in 39 years and doesn’t know what to do.

[Grapefruit22]

I received a call today from the sleep clinic stating they can’t get me an ASV machine through the clinic because of my insurance so they have sent my prescription to aeroflow to be filled through them? I googled the company and all I can find are terrible reviews.

I am still trying to get access to the sleep study information from the ASV test and the most recent clinic.


Before ALL of this started I stopped taking birth control, after 20+ years. I was okay for 2-3 months and then all this started up. My hormones went all over the place, I became really sick, started snoring. Before stopping the birth control I had gained a significant amount of weight in a very short time, I am working to lose weight and correct the hormone issue. I can’t seem to find any info if this could have at all caused central apnea. That specific apnea seems to be rare and caused by serious medical conditions?

I have been to a rheumatologist and been cleared for any autoimmune disease, no thyroid issues. Been to an endocrinologist and been cleared there as well. All my blood labs come back normal aside from inflammation being high which has been labeled unspecific. Iv been diagnosed perimenopausal which I have been told will mean continued hormone fluctuations which cause inflammation. But can’t seem to find any connection with it to central apnea, just hypopneas or obstructive breathing.

[Miss Emerita]

A few thoughts and questions.

* Have your blood tests for inflammation done again in a month or two. You want to find out whether it's acute or chronic. More here: https://my.clevelandclinic.org/health/s ... flammation

* Be very persistent about getting those sleep studies. The details matter, and we can give you better advice once we are able to look at them.

* In your shoes, I'd hold off on getting an ASV machine until you and your sleep doctor can arrive at a better understanding of your condition.

* Ozij was suggesting that you ask your regular doctor for a blood oxygen monitor to use for a few days and nights. (PCP stand for "primary care physician.")

* Do you live at a high altitude? Are you taking any narcotic-type medications? (Either of those might contribute to central apnea.)

* You are right that some central apnea is "treatment emergent." It shows up when you use a PAP machine. So it's important to see whether you had CAs in a test without a machine.

* Some central apnea is idiopathic, meaning there's no discoverable reason for it. So if you do have it -- which isn't clear -- that wouldn't necessarily mean you have some worrisome health condition.

I'm really sorry your doctors don't listen to you better. One thing you might try is to prepare a written list of observations and questions ahead of time and go over it with them. Another is to bring a family member or friend with you to your appointments so they can listen in and, if the doctor is blowing you off, help to get the discussion back on track.

[Grapefruit22]

I have several pages of my first two sleep studies from the allergy and breathing clinic, but I don't know how to attach them to the forums. Can anyone help me with how to do that?

I have my paper from my ASV study but I cannot access ANY of the other 2 studies that 4bettersleep did, I can't even get into the patient portal, the only way I got the ASV study was a copy of a fax that was sent to my doctor. They did not send my doctor ANY of the other studies they did. The forum seems to not let me attach just one file attachment of my ASV paper.

[Miss Emerita]

Unfortunately, the site has an attachment limit that has been exceeded. What you can do, though is use an image-hosting site and then posting a link to an image of your report. A lot of people use Imgur. I don't know whether your report is already in the form of an image, but if it isn't, try taking a screen shot of it or scan it.