Sleep Apnea and an Autoimmune disease

Hi

I'm shattered, so I guess I'm in the right place

I must have had sleep apnea from a very young age, but it took getting to extreme tiredness and not knowing how I even got to the doctors to get diagnosed at 34. I've now had a CPAP for 18 months and I think it's the bees knees

As patients go I'm extremely compliment. I wear it every night and most nights its on all night, sometimes it falls off or I have a cold. Recently I've become completely exhausted again and have been diagnosed with an autoimmune disease. One of the issues with an autoimmune disease is fatigue. So now it's the double whammy. Just as I was seeing the benefit of CPAP I'm back to exhausted.

With CPAP are we still more tired than the average? I'm assuming we still have lower sleep quality due to mask and not perfect treatment?

Anyone else know how I feel? Each individually I probably could survive but both I feel has tipped me over the edge. (Along with being a single parent to young children).

Any tips?

Cheers

You are definitely not alone. If you stay on the forum for a while you'll read about people (including younger adults) who use their machines faithfully but for one reason or another don't feel a great deal of benefit. It sounds like you did, but then had the second setback of the autoimmune condition. You've got a lot to deal with as a single parent.

You asked about "not perfect treatment." At the very least we can help you take a close look at your cpap therapy to make sure it's as optimal as it can be. Every little bit helps. Do you use SleepyHead to check on how it's going? If not, that would be a good start -- let us know and we'll take you through the steps.

And welcome to the forum.

Is Sleepyhead an app to review your data? I just take it to the pharmacy and they give me a report, but it would be great to do myself. I do check the duration and ahi each morning. Sometimes not the best news straight up!!

KSparkles wrote:Is Sleepyhead an app to review your data? I just take it to the pharmacy and they give me a report, but it would be great to do myself. I do check the duration and ahi each morning. Sometimes not the best news straight up!!

Well then, we've got a place to start!

SleepyHead is free software that many of us use to see what's going on with our cpap therapy. It can be tremendously helpful when the AHI is not the best news straight up. You can look at graphs that allow you to see what was going on all night -- like, do your apnea events happen in clusters, are mask leaks a problem, do we notice anything else at the points where we see events happening... Here's an example of a one-night SleepyHead report:



More on SleepyHead: https://sleep.tnet.com/resources/sleepyhead

So first, what is the exact make and model of your machine -- chances are good that it's supported by SleepyHead but let's make sure. If you're not sure, start with what info you have about your machine and we can narrow it down to specifics.

Thanks for quick reply. I've got ResMed S9 and N10 nasal mask. I did have the swift fx but I akways took it off in my sleep!

Does ResMed have their own software or is that just for pharmacy use?

KSparkles wrote:Thanks for quick reply. I've got ResMed S9 and N10 nasal mask. I did have the swift fx but I akways took it off in my sleep!

Does ResMed have their own software or is that just for pharmacy use?

There's ResScan but most of us find SleepyHead much more user friendly. ResScan is supposed to be for clinical use only but some folks here use it. If you're interested someone here can help you obtain it. SleepyHead works great with the S9 machines.

What is the name right by the Start/Stop button on your S9? Elite, Autoset, Escape Auto, VPAP, or.....?

I'm curious about your references to pharmacy -- is your DME (durable medical equipment provider) actually a pharmacy?

It's an S9 Autoset breathe easy.

I'm in Australia... I got the prescription from the sleep clinic at the hospital and I bought the machine from a pharmacy (only some offer this service).

How do I load my SD card into my computer and make it write protected. I have a Mac Mini with no SD card reader...

You can buy an external card reader that plugs into a USB port.
Since the "Read-Only" slide switch on your SD card is only a visual indicator for the SD reader, you should check with a different card whether or not your reader recognizes the switch position. Then each time you want to load your data, slide the switch into Resd-Only position, insert the card, read the data into your software, remove the card, slide the switch to the write position, and replace it into your CPAP.

The CPAP machine does recognize the switch position but will run as if normal with the switch in Read-Only mode and record no data so it is important to make sure the switch is correct before putting it back.

Do you have access to a recording pulse oximeter like the CMS50F?
Does your autoimmune disease involve your ability to breathe?
If so, you might take a look at your SpO2 levels as low oxygen levels can produce the symptoms you are experiencing.
It may be that you need a different type of machine from the one you have.

KSparkles wrote:It's an S9 Autoset breathe easy.

I'm in Australia... I got the prescription from the sleep clinic at the hospital and I bought the machine from a pharmacy (only some offer this service).

How do I load my SD card into my computer and make it write protected. I have a Mac Mini with no SD card reader...

The Autoset is a good machine with full data. An external card reader is fairly inexpensive. And SleepyHead works with Macs -- in fact it's the only software that has a Mac version to date. But it's great.

I don't think there is any reason for us to be talking about pulse oximetry and different machines until/unless you indicate that you have respiratory problems beyond sleep apnea. I know you're already a fatigued single parent and you don't need to be worrying that something else is wrong. Let's just see what's currently going on with your cpap treatment.

I have multiple autoimmunes... plus sleep apnea, really depends on which one(s) you have to know whether it'll impact your breathing or not.

I've got Ankylosing Spondyalitis. It isn't restricting my chest movements / breathing. I was more trying to work out if I'm going to be more tired than someone else with the condition as I have SA too. I'm treated for SA but I wasn't sure if you ever feel as refreshed on CPAP as normal sleeping folk.

I'm still going to check I'm optimising my SA treatment.

wrote:
I'm curious about your references to pharmacy -- is your DME (durable medical equipment provider) actually a pharmacy?

In my travels in the USA, I have found this is often the case in small towns in rural areas. There is a family-owned pharmacy that also has a DME license. CPAP machines and masks are out on the shelf. Walkers, crutches and wheelchairs also.

You can also get a good hot dog with chili and slaw, a cherry coke and a chocolate sundae at their soda counter.

They will ask you where you are from and what you are doing in town.

I am so sorry about your Spondylitis diagnosis.
Among other things, it can cause pain at night and that can make your apnea worse and impact the quality of your sleep as well.

It will be important to track your data over time to see how the components of your AHI change over time. Trends and not night-to-night numbers are what should be followed. Then you can see if any changes in pressure might be helpful.

The other parameter to follow is Tidal Volume which tracks how much air you are getting. It will be a lead indicator of breathing issues from the Spondylitis.

Best wishes on your journey.

I also have Ankylosing Spondyalitis, SA, CPAP made an amazing difference in how I felt, with CPAP I woke up in the morning feeling refreshed, before CPAP I woke up every morning a lot more tired than before climbing into bed the previous evening.

From my experience I would say yes it's quite possible to feel as good as normal sleeping folk using CPAP, since everyone is different it's possible to have a better than average experience which I believe is what happened in my case.

I"ve had 4 or 5 sleep studies and the recommended pressure settings has always been to low. After 1 1/2 years of using CPAP every night and actually feeling worse, I purchased an data capable CPAP auto. The next morning I woke up early feeling refreshed and for the next 6 months every time I woke up I was dreaming. Prior to CPAP I hadn't remembered having a dream for 20 years. Eventually the dreaming got into a normal pattern like everyone else.

KSparkles wrote:I've got Ankylosing Spondyalitis. It isn't restricting my chest movements / breathing. I was more trying to work out if I'm going to be more tired than someone else with the condition as I have SA too. I'm treated for SA but I wasn't sure if you ever feel as refreshed on CPAP as normal sleeping folk.

I'm still going to check I'm optimising my SA treatment.