Exhausted and depressed

[lcwgriffin@gmail.com]

I am a new CPAP user to treat Central Apnea (no obstruction, just stop breathing while asleep). I have been using the machine for about three weeks and I have never been more miserable. My settings have been adjusted recently with no relief. I have no energy, no motivation to do anything, work is difficult, and I am depressed. I am afraid to quit using the CPAP but I don't know how much longer I can deal with this. Every part of my life has been negatively impacted to the point I feel like I should live on an island by myself until I can get it together to join the human race. PLEASE HELP if you have suggestions or ideas on what I should do.

[Pugsy]

Please register and list your equipment in your profile.

Specifically which cpap machine are you using? Plain CPAP is not usually the treatment of choice for someone with only central sleep apnea events. So we really need to know exactly which machine you are using to have any idea what to offer you as ideas to help.

Hopefully you have a machine that offers full data and easy to obtain software so you can see for sure what the machine is doing and how your sleep is going.

[chunkyfrog]

Just guessing here, but would insurance still require OP to "fail" cpap in order to get
a more advanced machine to address the central apnea?
Straight CPAP or even APAP may have been RX'd, in SPITE of the diagnosis-
-just because some pencil pusher at the insurance doesn't know what they are doing?
If I'm wrong, I'll just shut up, now.

[Guest]

I can't find a place to post the type of equipment I have. Can you direct me? My equipment is the ResMed S9 series with the H5i humidifier. Thank you for responding. Eager to hear from you

[Pugsy]

My equipment is the ResMed S9 series with the H5i humidifier.

You need to register at the forum and log in before you can get to the equipment section.
wiki/index.php/Registering_Equipment_in_User_Profile

What else does it say on the S9? Up by the knob to turn it off and on...there are several models of the S9 machines.

[The Sheikh]

I can't find a place to post the type of equipment I have. Can you direct me? My equipment is the ResMed S9 series with the H5i humidifier. Thank you for responding. Eager to hear from you

As Pugsy said, you may have the wrong S9 machine for central treatment. Hopefully it is an "Adapt SV" S9 machine, an ASV type.

I, too, have mostly centrals and was miserable on a regular S9 CPAP machine. In fact, my centrals got much worse using the machine. After switching over to the Adapt ASV, my health is now excellent and I sleep very well.

So don't give up yet. Let's figure out what's happening. An ASV machine is probably needed for your kind of treatment requirements.

Tom

[Guest]

Here is all I can find about my equipment: ResMed, S9 series, AutoSet, H5i. I just noticed on the equipment booklet that the machine is "indicated for the treatment of obstructive sleep apnea for patients". That's not me. Am I given the wrong treatment? I am under the care of a Board certified neurologist who is also certified in sleep disorders treatment. Regardless, I will question the treatment and get other opinions if needed. I am so desperate.

[Guest]

Thank you so much Tom. I will ask about a different machine. I don't know how to read the information that so many other users are getting from their machines. I have no idea whether or not my apnea events are decreasing or not. i really feel like my neurologist's office has not given me enough education on how to learn and manage this equipment. I am learning more from this forum.

[BlackSpinner]

Here is all I can find about my equipment: ResMed, S9 series, AutoSet, H5i. I just noticed on the equipment booklet that the machine is "indicated for the treatment of obstructive sleep apnea for patients". That's not me. Am I given the wrong treatment? I am under the care of a Board certified neurologist who is also certified in sleep disorders treatment. Regardless, I will question the treatment and get other opinions if needed. I am so desperate.

Yes it is the wrong machine. However your insurance company may require you to "fail" this one first because the next level of machine is more expensive.

[johnthomasmacdonald]

it sounds like your doctor should be shot. if for no other reason than “pour encourager les autres” (“in order to encourage the others”).

[The Sheikh]

Thank you so much Tom. I will ask about a different machine. I don't know how to read the information that so many other users are getting from their machines. I have no idea whether or not my apnea events are decreasing or not. i really feel like my neurologist's office has not given me enough education on how to learn and manage this equipment. I am learning more from this forum.

You may have discovered the answer to your problem. Try to get an ASV machine asap and give it a try.

Do a search on this board for "ASV" and read, read, read. In a day or so you will probably learn more than your doctor knows about the implementation and treatment using an ASV.

We centrals suffers are about 5-10% of the apnea population. The docs and insurance companies treat for the mainstream. We need to do our own homework and become pro-active. At least at this point in time, since ASV is a relatively new "miracle" treatment.

Keep us updated!

Tom

[Pugsy]

The S9 AutoSet is a full data machine. There is easily obtained software so you can see what is going on.
ResScan...you can find it here in UncleBob's signature.
memberlist.php?mode=viewprofile&u=38643

You will want to watch the video tutorial
http://montfordhouse.com/cpap/resscan_tutorial/

SleepyHead will also work and I have information and links for it in my signature line. There is a Mac version if you are using a Mac.

If your diagnosis is central sleep apnea with no history of obstructive events then it is unlikely that the Autoset will do the trick and understandably you feel awful. I don't know what your insurance situation is. Sometimes insurance companies do require a failure of conventional cpap treatment before they will pay for the much pricier machines that are normally used for central sleep apnea.
You need to sit down and have a heart to heart discussion with your doctor about why the Autoset was given and what can you expect and what do they expect.

There is always the possibility that an error was made...maybe you weren't even supposed to get the Autoset.
You need a frank discussion with your doctor.

How many sleep studies have you had? Did you have a titration study where they put the mask on your? Do you have copies of the sleep studies? If not, you need to get them. Maybe there was a reason for the Autoset...maybe a mistake. Either way...you need to be informed about any and all aspects of what the plan might be.
When is your next follow up planned?
In the meantime you can used the software to see what is going on. If a truckload of centrals are showing then that follow up needs to be sooner than later. If you do need the high dollar ASV type of machine used to treat central sleep apnea you need to be aware of whatever hoops you may need to jump to get one.

[chunkyfrog]

As a matter of fact, any auto-cpap may CAUSE additional centrals, due to the way it works.

[Guest]

To all of my sleep disorders friends . . .thanks for your help. I am going to try to register my equipment and get more familiar with this web site. I may be slow to respond but DON'T LEAVE ME PLEASE! I am going to follow-up on all of the suggestions so far. I may not respond quickly but I am reading everything.

[archangle]

lcwgriffin, welcome.

Let me suggest you go ahead and register and create an account here. That will help us know it's you.

There's a "register" link near the upper right of the window.

Remember we haven't seen your sleep test results, your insurance, or the data your AutoSet machine records while you're using it.

Luckily, your AutoSet machine does record data of how you are breathing when you use it. Your doctor should be checking this data to see how it's working. Unfortunately, many doctors don't actually look at this data, despite it being available.

If your AutoSet machine doesn't fix your apnea, there are more complicated CPAP machines that are better at treating central apnea. I wouldn't go so far as to say the AutoSet is "wrong," but there's a good chance you need a more complicated machine.

Don't put too much faith in any doctor, even if they're "board certified" in sleep problems. The standard of care for apnea treatment is really dismal. Many doctors are stuck in the dark ages of early CPAP machines, which is like treating heart disease using a stethoscope instead of an EKG.

Unfortunately, the medical mafia likes to treat CPAP data with the mushroom theory. Keep them in the dark, feed them manure, and when they stick their heads up, lop them off. Some of them will treat you like a hypochondriac if you mention checking your own data. DMEs (CPAP salesmen) will tell you that you'll ruin the CPAP machine if you look at the data. If it's midnight and a DME tells you it's dark outside, go and check for yourself.

Do some more reading. Read the links in my signature line. There's also some information in the CPAP Wiki at the top of the web page with the yellow light bulb.