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New diagnosis, in shock - Silverwitch - 02-01-2020
I'm a 71 year old woman just diagnosed with severe sleep apnea and I'm in shock! Can this be right?
I'm a life long insomniac (trouble falling/staying asleep) but am rarely tired during the day, and actually never fall asleep during the day -- can't even nap! After years of complaining about not being able to get to sleep, my doctor finally referred me to the Kaiser sleep lab and I had the home test two days ago. They sent me an email with bare bones results: AHI 41, RDI 43 and abnormal O2 for 13% of the night. I'm supposed to report back to the sleep lab in 10 days for a cpap fitting. No visit with a doctor until after the tests. Kaiser has provided some links and videos explaining sleep apnea and treatment and I've done some internet research on my own but it's a lot to absorb.
I understand that false positives are rare, but given my lack of sleep apnea symptoms, should I be concerned that something might have gone wrong with the test? Should I press for a full sleep test in the lab at this point?
As someone who struggles to fall asleep in the best of circumstances (and is somewhat claustrophobic), I dread being on an uncomfortable machine and being unable to sleep for however long it takes to get used to it. I want to make sure I really need to do this.
Thanks for any insights.
RE: New diagnosis, in shock - DeepBreathing - 02-01-2020
G'day Silverwitch. Welcome to Apnea Board.
It does come as a shock to many people when they're diagnosed with sleep apnea, especially if they are not aware of any symptoms. It could well be that your insomnia is due to apneas waking you during the night. There can also be apneas occurring as you transition from wakefulness to sleep, which we refer to as sleep-wake junk (SWJ). These can usually be ignored, but they may be part of what's preventing you falling asleep.
While it's always possible there was an error in the test, an AHI of 41 is pretty severe and unlikely to be a false positive unless they've got your results mixed up with somebody else. If you'd like to upload the report we'd be happy to have a look at it and see if there's anything that jumps out as an anomaly. Get them to provide you with the full report including charts and tables, not just a summary (often the summary misses some important information). If uploading, make sure you erase any personal identity such as name, address, Medicare number etc.
You mentioned that you're going back to the sleep lab in 10 days for a "CPAP fitting". Do you know if this is a titration test (overnight)? If so, any errors in the diagnostic test should become evident. Personally I don't have a lot of faith in the titration process, but it is an opportunity to review the diagnosis.
You will likely be offered a limited choice of machines - our clear preference if you have ordinary obstructive sleep apnea is the Resmed Airsense 10 Autoset for Her. This is the gold standard for treating OSA and the great majority of patients get better and more comfortable sleep with the Resmed rather than the competing Dreamstation. Read about machine choices here.
Choosing a mask is likely to be the most difficult part. Every face is different and there are dozens of different masks out there, so ensure you have a return scheme in case the first one doesn't work out. Read all about it in our mask primer.
Don't worry about not being able to adapt. You've hit the big 7-Oh and no doubt had a lot of trials and tribulations during your life. Wearing an astronaut mask at night will be the easiest thing you've ever done.
RE: New diagnosis, in shock - harrywr2 - 02-01-2020
Quote:No visit with a doctor until after the tests. Kaiser...
As a fellow Kaiser patient there wasn't a lot of follow up. An email that I had sleep apnea...an appointment to get a CPAP machine...a followup to say 'I was doing great'. If you are claustrophobic starting with a pillow mask is probably a good idea.
It's all kind of overwhelming at first but for me at least the world seems to be a more cheerful and enjoyable place after a decent night's sleep.
RE: New diagnosis, in shock - JoeyWallaby - 02-01-2020
Insomnia is a sleep apnea symptom.
RE: New diagnosis, in shock - Gideon - 02-01-2020
Welcome to the forum. It sounds like you are on the same vacation I started on. Egypt with a specific stop for the De-Nile tour.
Let me describe your night in simple terms. Your partner, that handsome young man named Apnea, is elbowing you in the ribs every 90 seconds, not fun.
Your nighttime oxygen levels sound low enough that you may require supplemental oxygen without CPAP.
On your machine, you have a choice. The DME, the supplier of the machine, makes more money by providing you the cheapest machine possible since their payment from insurance for any of them is the same. Your cost is the same for any of them. Would you buy a dress that you liked but doesn't fit you? Didn't think so. You have a choice. Even if they tell you you don't.
Your best choice is the ResMed AirSense 10 AutoSet for Her or right behind it the ResMed AirSense 10 AutoSet. The keyword is AutoSet.
RE: New diagnosis, in shock - Sleeprider - 02-01-2020
Good advise above. Not all AHI is a choking apnea. Women in particular seem prone to hypopnea which is simply a reduction in breathing volume and not a complete cessation. The disruption to your sleep and desaturation of oxygen is real, and hopefully you will be more comfortable and sleep better with CPAP. As bonjour said, the Resmed Airsense 10 Autoset is the best machine for you, because it actually offers separate breathing pressures for inhale and exhale. In addition to keeping your airway open as all CPAP does, this provides support for inspiration, and can help improve hypopnea by overcoming flow limitation.
It's all a lot to take in, but you'll do great. Find the most comfortable interface you can. A nasal pillows mask is the lightest and easiest to wear if you can avoid mouth breathing. Good luck and welcome to Apnea Board.
RE: New diagnosis, in shock - Sleepster - 02-01-2020
(02-01-2020, 01:31 AM)Silverwitch Wrote: I'm a 71 year old woman just diagnosed with severe sleep apnea and I'm in shock! Can this be right?
Of course it can be right, and it probably is. It's no wonder you're in shock. I was too when I found out I had it. It scared the heck out of me and it made me commit to using my CPAP machine every time I slept, even if it was just a nap.
Quote:I'm a life long insomniac (trouble falling/staying asleep) but am rarely tired during the day, and actually never fall asleep during the day -- can't even nap!
A lot of people go to a doctor because they feel tired all the time, and they end up finding out that the reason for the tiredness is sleep apnea. But not all of us have that complaint. My complaint was difficulty falling asleep, difficulty staying asleep, and waking up too early in the morning and not being able to go back to sleep. Once I had my CPAP machine I had a lot of trouble adapting to it, but after a couple of weeks I noticed that on some mornings I would wake up with the feeling that I had actually got some good quality sleep. As the months went by those mornings became more and more frequent. Of course, many people have no trouble adapting and report that they feel much much better after the first night of using their CPAP machine.
I figure that I was always so tired that I didn't notice it because I had no experiences with a lack of tiredness so I had no way to make a comparison. Now that I've been on CPAP therapy for a few years I notice that there are times when I'm tired and times when I'm not.
Once you get a good CPAP machine you will be able to look on your computer at the data it generates. That data will let you know for sure whether or not you have it. But based on your test results there is little doubt that you do have it.
All of this is overwhelming. There's a lot to take in and it's difficult to follow it all. Just take it one step at a time. One thing you will notice is that as you adapt to CPAP therapy you will be able to think more clearly, and that will be a big help.
RE: New diagnosis, in shock - Silverwitch - 02-01-2020
Thank you all for welcoming me to the Forum and for your very helpful responses. It's strange to see myself in denial and panic when I'm a fairly practical person but I have confidence that will pass as I learn more about this.
I've now realized I have additional symptoms that previously seemed unconnected, such as excessive nocturia (even for a woman my age!) and odd sensations in my lower legs and feet which I suspect may be nasty fluid shifts in reaction to airway obstruction. This seems to be pretty recent since nothing turned up on a cardiac workup a year or so ago.
I will try to pry loose from Kaiser the actual test results and information about what equipment options I have. My appointment next week is for titration, yes. I haven't figured out how to tag fellow Kaiser member harrywr2
to ask for any suggestions for dealing with Kaiser that he may have. My Kaiser sleep center is in Novato California so if anybody has any experience there it would be great to connect.
Before I get my machine do you think it's helpful for me to sleep more upright with lots of pillows? I am sleeping on my side as I understand that can help keep the airway open.
(02-01-2020, 09:25 AM)bonjour Wrote: Welcome to the forum. It sounds like you are on the same vacation I started on. Egypt with a specific stop for the De-Nile tour.
Let me describe your night in simple terms. Your partner, that handsome young man named Apnea, is elbowing you in the ribs every 90 seconds, not fun.
Your nighttime oxygen levels sound low enough that you may require supplemental oxygen without CPAP.
On your machine, you have a choice. The DME, the supplier of the machine, makes more money by providing you the cheapest machine possible since their payment from insurance for any of them is the same. Your cost is the same for any of them. Would you buy a dress that you liked but doesn't fit you? Didn't think so. You have a choice. Even if they tell you you don't.
Your best choice is the ResMed AirSense 10 AutoSet for Her or right behind it the ResMed AirSense 10 AutoSet. The keyword is AutoSet.
Now I see the REPLY buttons and have discovered how to quote. Yay.
My recent blood test for oxygen saturation was WNL so the low level during the night may be not carry over into the daytime.
I will definitely try for the AutoSet for Her.
RE: New diagnosis, in shock - Silverwitch - 02-01-2020
(02-01-2020, 07:14 AM)harrywr2 Wrote:Quote:No visit with a doctor until after the tests. Kaiser...
As a fellow Kaiser patient there wasn't a lot of follow up. An email that I had sleep apnea...an appointment to get a CPAP machine...a followup to say 'I was doing great'. If you are claustrophobic starting with a pillow mask is probably a good idea.
It's all kind of overwhelming at first but for me at least the world seems to be a more cheerful and enjoyable place after a decent night's sleep.
Do you happen to know whether Kaiser will offer the ResMed AirSense 10 AutoSet for Her right off the bat or will they require me to try cheaper machines first? Do you think they will they prescribe a travel machine (I could buy my own if necessary)? I have a 2 week vacation coming up at the end of March that involves air travel and hope to have settled on the right settings by then.
RE: New diagnosis, in shock - harrywr2 - 02-01-2020
All of us in our group 'CPAP familiarization course' were offered Resmed Airsense 10 Autoset's right off the bat. We all happened be men. I don't know if I could have insisted on a 'for her'...I was ignorant about such things at that point. At least in the Greater Seattle area Kaiser is standardized on Resmed.