In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Thumper1947
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Thumper1947 » Thu Nov 03, 2022 10:26 am

Pod,
Nasal washes are great, but the one imperative thing is to use only distilled water. As I mentioned in my post, a nasal wash combined with Xlear spray is even better to totally clear your sinuses.
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ozij
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by ozij » Thu Nov 03, 2022 10:36 am

Thumper, I believe you mean "distilled" as opposed to chlorinated tap water.
You can't mean "only water without salt".

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Thumper1947
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Thumper1947 » Thu Nov 03, 2022 2:41 pm

Oz,
We're on the same page. What I said was,
Pod,
Nasal washes are great, but the one imperative thing is to use only distilled water. As I mentioned in my post, a nasal wash combined with Xlear spray is even better to totally clear your sinuses.

I used the word imperative to emphasize the importance of using distilled water. Occasionally, people don't read the instructions or forget. If you forget the salt and buffer, you might get a sting in your nose. If you use tap water, you might die from a brain infection, as some already have.I use the salt packets from Walmart and I think they are about 10 cents each for a pre-mixed salt and buffer mixture.
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ozij
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by ozij » Thu Nov 03, 2022 3:23 pm

I prefer the prepackaged salt packets too - they're better than my own mixture.

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rick blaine
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by rick blaine » Thu Nov 03, 2022 5:19 pm

Hi Thumper1947, Hi ozij,

When I was working full time, my job took me to six of the 50 states. Sometimes repeatedly, so that I visited CA, FL, and NY several times. The shortest trip was three weeks. The longest trip was three months. I think that counts as 'having lived and worked in America. :)

I was there in CA when they had that water panic in the late 80s. And I know the history of Legionnaires disease. And I never drink the iced water which they bring to the restaurant table as soon as my friends and colleagues and I sit down. But I appreciate it as a gesture. It is a form of courtesy.

And speaking of courtesy, I'm sure your intention in recommending distilled water to the UK-based Pod153 was, and is, a positive one. However ...

1. The tap water in homes throughout the UK is fit to drink. It has to be that way, by law.

There are differences up and down the country as to how 'hard' or how 'soft' – meaning the amount of calcium carbonate and magnesium carbonate which is dissolved in it. But all domestic water is safe to drink.

2. The kind of distilled water that can be bought in any supermarket in the US – Walmart, Vons, you name it – for less than a few dollars is just not available from equivalent stores in the UK. There is bottled water from this or that mountain spring, and it is safe. But it is not distilled.

3. You can buy what's labelled 'distilled water' in motoring supplies stores and in the little shops attached to gas stations. But that is not safe to drink. It is intended only for topping up car or truck batteries.

4. In the UK, the kind of distilled water that is safe to put in your mouth is (a) only available in pharmacy stores and via medical supply companies. And (b) is really, really expensive.

But as I said, British people – and visitors – can safely drink – and rinse and gargle with – the tap water.

Thanks again for your kind intention. :)

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ozij
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by ozij » Thu Nov 03, 2022 10:35 pm

Thanks for the info about the UK, Rick.
I don't live in either the UK or the States.
For me, where the water is hard, and tap water safe, the best solution (no pun intended) is boiled and (then cooled to agreeable temp) water from a Brita water filter. I clean the pitcher and change the filter as recommended.

The main point in my response was to make sure "only distilled" wouldn't be understood as "without salt"...

YMMV -- or as the case may be YKmMV :wink:

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Thumper1947
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Thumper1947 » Fri Nov 04, 2022 5:42 am

Rick,
I had no idea that you couldn't go to any grocery store or Walmart in the UK and pick up a gallon of distilled water, so thanks for educating me on that. As someone who has recommended using a nasal wash to safely clear your sinuses, I feel I also have a responsibility to point out the downsides, as well as the upsides. This is a safe and effective procedure if done properly, if not it can also be very dangerous. If I lived in the UK, or anywhere that distilled water was not readily available,there are other ways to safely address the problem. Here's from the Australian Board of Health:

What type of water is safe to use for nasal irrigation?

The types of water safe for nasal irrigation include:

distilled or sterile water
boiled and cooled tap water
tap water passed through a filter with an absolute pore size of 1 micron or smaller.

There are also other options. The easiest would probably be to boil the water. You could purchase a distilled water machine from Amazon for as low as $70. You can purchase distilled water itself from Amazon, although I don't think this would be a good option, or maybe even not available in the UK. There's probably more options, but the point is, no matter where you are, if you are going to do it, do it safely. Tap water is not a safe option to flush into your sinuses, ever. Here's a link that goes on for dozens of reports and more reports of the dangers, obtained by Googling, "Brain infection from nasal wash."

https://www.google.com/search?client=fi ... nasal+wash

Again, thanks for the info about the UK, I learned something and that alone makes it a good day.

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ChicagoGranny
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by ChicagoGranny » Fri Nov 04, 2022 8:04 am

To my knowledge, there has never been a death due to Naegleria fowleri contamination in any US municipal water system. The same may be true for UK municipal systems.

Naegleria fowleri has caused deaths associated with using disinfected public drinking water supplies in Australia 1 and Pakistan 2, an untreated, geothermal well-supplied drinking water system in Arizona 3, and a disinfected public drinking water system in Louisiana 4,5. The largest amount of experience in managing Naegleria fowleri-contaminated water supplies is in Australia, which had multiple deaths in four states during the 1970s and 1980s that were linked to swimming or having other nasal exposure to contaminated drinking water. The infections were linked to piping drinking water overland, sometimes for hundreds of miles, that resulted in the water being heated and having low disinfectant levels. These conditions allowed the water and pipes to become colonized by Naegleria fowleri. Several water systems in the states of Western Australia and South Australia continue to monitor regularly for Naegleria fowleri colonization in drinking water distribution systems 6. Experience gained in managing Naegleria fowleri contamination of specific water systems has prevented further infections in Australia since that time. ...

You cannot be infected with Naegleria fowleri by drinking contaminated water.

Complete article: https://www.cdc.gov/parasites/naegleria ... stems.html

Thumper1947
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Thumper1947 » Fri Nov 04, 2022 10:29 am

Granny,

Here's two that were fatal.. It's extremely rare. From 2006-2015, there were 37 cases in the U.S., three of those due to nasal wash with tap water. If you do get it, it has a 97% fatality. So it's probably not going to happen, but for 99 cents for a gallon of distilled water that lasts me almost a month, it's worth it for me. I don't think you could find any reputable medical advice, nor the makers of the devices that don't recommend distilled water either. That said, if it's hard to get in the U.K., there are other options available.

https://www.cbsnews.com/news/woman-dies ... e-sinuses/

https://abcnews.go.com/Health/Wellness/ ... d=15170230
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ChicagoGranny
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by ChicagoGranny » Fri Nov 04, 2022 11:33 am

Thumper1947 wrote:
Fri Nov 04, 2022 10:29 am
Granny,

Here's two that were fatal..
ChicagoGranny wrote:
Fri Nov 04, 2022 8:04 am
To my knowledge, there has never been a death due to Naegleria fowleri contamination in any US municipal water system. The same may be true for UK municipal systems.
Thumper1947 wrote:
Fri Nov 04, 2022 10:29 am
https://www.cbsnews.com/news/woman-dies ... e-sinuses/
There is no mention in the article you cited that the water was from a municipal system. Furthermore, it is not even clear that the neti pot rinse caused the infection.
Doctors who treated the woman also believe that the sore on her nose was connected.
Thumper1947 wrote:
Fri Nov 04, 2022 10:29 am
https://abcnews.go.com/Health/Wellness/ ... d=15170230
Likewise, there is no mention in the cited article that the infection in these two cases was from municipal water. However, if I lived in the deep south, I would not use tap water for nasal rinses - just the thought.
Thumper1947 wrote:
Fri Nov 04, 2022 10:29 am
I don't think you could find any reputable medical advice, nor the makers of the devices that don't recommend distilled water either.
In ResMed's user manual for the UK, water for the humidifier is mentioned 27 times without specifying distilled water. They even mention water up the nose (from rainout) without any caution to use only distilled water. There is a 28th appearance of the word "water" where "distilled" is mentioned. It's only about packaging symbols.
Symbols

The following symbols may appear on the product or packaging.

https://document.resmed.com/documents/u ... r1_eng.pdf
"May" or may not. I don't think ResMed is concerned about Naegleria fowleri.

The chances of being killed in an auto wreck during an extra trip to the store to buy distilled water are far greater than using municipal tap water.

Pod153
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Pod153 » Fri Dec 02, 2022 12:40 pm

I have acquired a machine! I got the last AutoSet 10 For Her in the ResMed stockroom. Tried on a bunch of masks and the ResMed nasal pillows was the best by far, so that's what I went for.

My nasal congestion was much better after a month of fluticasone and azelastine sprays, but one night with the CPAP and my nose is blocked again, so I guess I need to adjust the humidity. They gave me the machine with the humidity set to Auto. I'm vaguely planning to switch it to 6 tonight but I don't really have a clue how that compares to Auto.

Perhaps more problematic: I kept the mask on for 6.5 hours last night...but slept for less than an hour.

The hour I did manage to sleep for was after I figured out they'd sent me away with EPR turned off, and I turned it back on in the clinician's menu because I felt like I was completely unable to exhale against the pressure. I am fully expecting the tech who is due to call me next week for a follow-up to tell me I shouldn't have done that, but there is absolutely no way I could have slept without it (having tried to for a good five hours and felt like I was choking the entire time).

Any change in pressure seems to wake me up immediately. I'm not kidding. Every time the ramp increases by 0.1 I can feel it and it jolts me out of drifting off to sleep, which I really didn't expect. So I have also turned the ramp off.

However I'm still waking up whenever the pressure changes. My AHI was only just over 5 in my original sleep study because even though I'm having plenty of events, most of the time I just wake myself up before I fully obstruct. It feels like that still happened a bunch of times last night. But now I guess the machine is raising its pressure for events that would have progressed to a full-blown apnea, and I'm being woken up by the machine instead of the apnea. I guess that'll lower my AHI, but in terms of actually getting sleep it's no improvement at all.

I do not normally have problems falling asleep, just with staying asleep. Now I guess I have problems with both. I am hoping it'll get better. But it worries me a little, because as I understand it being exquisitely sensitive to airway changes and waking up at the drop of a hat...is just UARS, isn't it? How the hell does anyone ever adjust?
Last edited by Pod153 on Fri Dec 02, 2022 4:22 pm, edited 1 time in total.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Julie
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Julie » Fri Dec 02, 2022 12:55 pm

Have you ever tried using one fixed pressure (of whatever suits) rather than Apap? Some people find it easier to sleep through that way as the changes disturb them.

Pod153
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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by Pod153 » Fri Dec 02, 2022 4:21 pm

Julie wrote:
Fri Dec 02, 2022 12:55 pm
Have you ever tried using one fixed pressure (of whatever suits) rather than Apap? Some people find it easier to sleep through that way as the changes disturb them.
Last night was my first night with it. It occurred to me that fixed pressure might be easier to sleep with but the problem is I have no data to go on yet because I’ve barely slept, so have no idea what the correct pressure would be! I do think fixed pressure + EPR might give me the best chance of sleeping through though.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Dog Slobber » Fri Dec 02, 2022 4:44 pm

Pod153 wrote:
Fri Dec 02, 2022 12:40 pm
The chances of being killed in an auto wreck during an extra trip to the store to buy distilled water are far greater than using municipal tap water.
The chances of dropping the distilled water on your toe and dieing from gout, is greater than the chances getting Naegleria Fowleri from municipal tap water.

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Re: In the UK...Mild OSA/UARS, awful nasal congestion at baseline, don't know where to begin with masks

Post by robysue1 » Fri Dec 02, 2022 6:46 pm

Pod153 wrote:
Fri Dec 02, 2022 4:21 pm
Julie wrote:
Fri Dec 02, 2022 12:55 pm
Have you ever tried using one fixed pressure (of whatever suits) rather than Apap? Some people find it easier to sleep through that way as the changes disturb them.
Last night was my first night with it. It occurred to me that fixed pressure might be easier to sleep with but the problem is I have no data to go on yet because I’ve barely slept, so have no idea what the correct pressure would be! I do think fixed pressure + EPR might give me the best chance of sleeping through though.
It's slower going trying to self-titrate with fixed pressures as compared to using auto mode. But it can be done.

Here's one strategy for doing it:

Before night 1: Spend some time trying to figure out how high you can set the pressure and feel like you can comfortably breathe with it while you are awake, but lying down in your bed. Start with a pressure of say, 9cm, and try to breathe with that for 10 minutes. If you can't do it, then turn the pressure down to 8 and see if you can breathe with that for about 10 minutes. Rinse and repeat until you find a pressure you feel comfortable breathing with for at least 10 minutes while you are lying down in your bed.

Night 1: Set the machine in CPAP mode with the pressure you identified in the previous step. Make sure the ramp is set to OFF. Sleep (as well as you can) with the pressure that you chose in the previous step.

Next day: Look at the data. If the AHI is obviously too high and the bulk of the events are OAs and Hs, you know you'll need more pressure to treat the OSA. If the AHI is well under 5 you've identified a pressure that is either what you need or pretty close to it. If your AHI is around 5, you may want to look very carefully at the distribution of events as well as what kind of events.

If you need to increase the pressure, then experiment while you are awake, but lying down with the mask on your face to see if you can increase the pressure by 1cm. If you aren't comfortable with a full cm increase in pressure, see if you can tolerate a 0.8 or 0.6 or a 0.4 increase in pressure. If none of those are comfortable, then increase the pressure by 0.2cm

And then rinse and repeat each day: Look at the data & determine if you still need additional pressure. If you decide you do need additional pressure because the AHI is still too high or there are troublesome clusters of obstructive events, spend some time playing with the machine while lying down to see if you can tolerate a 1cm increase in pressure. If you can't, then determine whether you can handle a pressure increase of 0.8, 0.6, 0.4 cm. And if none of those seems tolerable, simply increase the pressure by another 0.2cm for the next night.

Eventually you will find a pressure level where your AHI will be low enough and hopefully by that time you will also be able to sleep through the night.
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