Need help, suspect UARS. Want to try APAP - need advice and guidance.

prodigyplace · Post by **prodigyplace** » Wed May 30, 2018 12:23 pm

chunkyfrog wrote: ↑
Wed May 30, 2018 11:20 am
Multiple threads--just being proactive
Some newbies are so confused, that is exactly what they do.
As to "for Her" machines:
I have the Airsense 10 machine--it attracts fingerprints.
Tempted to apply decorative duck tape to cover the smudge that will not budge.
The S9 series had optional "skins"--too bad none are made for the new line.

You mean this?

https://www.cpap.com/productpage/resmed ... plate.html

Choice of colors too.

Pugsy · Post by **Pugsy** » Wed May 30, 2018 12:28 pm

Yeah...the P10 pillows is what I currently use and have pretty much since it was released. I like to try new things and there's been some new masks released but I keep going back to the P10.
It's about as nothing of a mask as is out there and the venting is essentially silent and can't be felt unless my hand is about an inch from the vent holes.

And while it would be a nice miracle that using the mask and machine lets you fall asleep quickly....don't hold your breath.

It's just a weird feeling in general and takes some getting used to.

What you can do though is use the mask and machine while not being under the gun to fall asleep and maybe avoid that stress.
Like while awake watching TV or reading a book.
My very first night with the mask and machine was in a sleep lab titration study and it ended up being the night from hell.
I couldn't fall asleep and was worried about falling asleep and that made it worse. The air going up the nose wasn't unpleasant but it was different and just being something different caused me to not be able to sleep well.

It took me about a week at home for my brain to get to be okay with the mask and machine helping out.
I had a lot of wake ups the first month just from my brain poking me to alert me to the alien on my face blowing air up my nose.
The brain doesn't like a lot of changes from its usual routine so even if the cpap and mask is really a good thing..it's a new thing and the brain still has to come to grips with the new way of doing something.

While it would be really nice if you had a first night miracle...don't let it get you down if you don't. Those miracles are extremely rare and the people who have them don't know how lucky they are. Not impossible of course but not probable for that miracle to happen.
I think the people who have the first night miracle are the ones with really, really severe OSA and the change is so dramatic that they feel it straight away. I didn't have the first night miracle or even the first week miracle. Might call it a first month miracle if going by reduction in nocturia and killer headaches but in terms of energy levels and sleep quality...a lot longer. It was a more gradual improvement instead of an overnight improvement.
I hope I am wrong but I don't believe in sugar coating anything.

canyouhearmeaya · Post by **canyouhearmeaya** » Wed May 30, 2018 12:33 pm

Pugsy wrote: ↑
Wed May 30, 2018 12:28 pm
Yeah...the P10 pillows is what I currently use and have pretty much since it was released. I like to try new things and there's been some new masks released but I keep going back to the P10.
It's about as nothing of a mask as is out there and the venting is essentially silent and can't be felt unless my hand is about an inch from the vent holes.

And while it would be a nice miracle that using the mask and machine lets you fall asleep quickly....don't hold your breath.
It's just a weird feeling in general and takes some getting used to.

What you can do though is use the mask and machine while not being under the gun to fall asleep and maybe avoid that stress.
Like while awake watching TV or reading a book.
My very first night with the mask and machine was in a sleep lab titration study and it ended up being the night from hell.
I couldn't fall asleep and was worried about falling asleep and that made it worse. The air going up the nose wasn't unpleasant but it was different and just being something different caused me to not be able to sleep well.

It took me about a week at home for my brain to get to be okay with the mask and machine helping out.
I had a lot of wake ups the first month just from my brain poking me to alert me to the alien on my face blowing air up my nose.
The brain doesn't like a lot of changes from its usual routine so even if the cpap and mask is really a good thing..it's a new thing and the brain still has to come to grips with the new way of doing something.

While it would be really nice if you had a first night miracle...don't let it get you down if you don't. Those miracles are extremely rare and the people who have them don't know how lucky they are. Not impossible of course but not probable for that miracle to happen.
I think the people who have the first night miracle are the ones with really, really severe OSA and the change is so dramatic that they feel it straight away. I didn't have the first night miracle or even the first week miracle. Might call it a first month miracle if going by reduction in nocturia and killer headaches but in terms of energy levels and sleep quality...a lot longer. It was a more gradual improvement instead of an overnight improvement.
I hope I am wrong but I don't believe in sugar coating anything.

Haha no it's all fair points. I often find it hard to fall asleep with distractions.. just having the wrists watch on with a chest sensor and finger pulse oximeter on for the home sleep-study the other night really threw my sleep off. Mainly becaus I was worried about pulling the chest sensor off!! I guess I'm hoping that the impaired breathing might also be one of the main causes of light sleep, and thus once I do fall asleep with the mask it'll help me stay there, rather than constantly waking up and become aware of the apparatus!! Time will tell.

I'd never even thought of using the machine whilst awake to adapt lol! What a good idea. I presume you can do that whilst seated, you don't need to be led down?

As I mentioned, I left my job yesterday and tomorrow is my last day. Realistically I'll probably take the next couple of weeks off one way or another, to recouperate but also as it'll allow me a much easier time to try out this machine.. If i'm struggling to sleep, knowing I have to wake up early for work ALWAYS keeps me awake, because of the stress! So not having to wake up for any particular time should hopefully allow a much smoother process.

prodigyplace · Post by **prodigyplace** » Wed May 30, 2018 12:36 pm

Also, do not get discouraged with the P10. If you buy the fit pack, it comes with 3 sizes of pillows.

Many of us had a little nasal tenderness when first using the pillows, but that subsides after a while.

Pugsy · Post by **Pugsy** » Wed May 30, 2018 12:40 pm

You can use the machine anywhere and in any position while just getting used to it.
I don't have a TV in the bedroom so if I wanted to use it while watching TV I would have to move the machine...be careful if you move the machine with water in the chamber...it can slosh out and water that makes it over to the electronics will of course fry the machine. Remove the water chamber when moving the machine... Even if you are careful crap happens sometimes when we move stuff. I dropped a water chamber once...slipped right out of my hands and I can't blame it on anything. It just happened.

The brain is a most powerful drug...and sometimes it doesn't do you any favors about falling asleep when it is hyper vigilant.
When we are under stress to fall asleep...that's when the brain will tend to be more hyper vigilant and keep us awake.

canyouhearmeaya · Post by **canyouhearmeaya** » Wed May 30, 2018 12:45 pm

Pugsy wrote: ↑
Wed May 30, 2018 12:40 pm
You can use the machine anywhere and in any position while just getting used to it.
I don't have a TV in the bedroom so if I wanted to use it while watching TV I would have to move the machine...be careful if you move the machine with water in the chamber...it can slosh out and water that makes it over to the electronics will of course fry the machine. Remove the water chamber when moving the machine... Even if you are careful crap happens sometimes when we move stuff. I dropped a water chamber once...slipped right out of my hands and I can't blame it on anything. It just happened.

The brain is a most powerful drug...and sometimes it doesn't do you any favors about falling asleep when it is hyper vigilant.
When we are under stress to fall asleep...that's when the brain will tend to be more hyper vigilant and keep us awake.

Eek, hadn't thought of that! Best hope I don't end up knocking the machine over in my sleep.

That was another question i meant to ask.. should I use the humidifier? Wasn't sure if that was just for mouth masks? Is there any reason NOT to use the humidifier? Also, do I NEED distilled water..? Not sure I've ever seen that in a shop in the UK!

Yep, you're right. Annoyingly, I find I feel WAY more anxious and stressed out when I've had a really bad night of sleep too.. Which then just perpetuataes the problem - vicious cycle!!

And the mask I ordered says it comes with 3 sizes of nasal pillow, thankfully!

prodigyplace · Post by **prodigyplace** » Wed May 30, 2018 1:24 pm

The humidifier is generally recommended to help avoid drying out the nasal passages. Distilled water is recommended in the US manuals, but the other ones just specify drinking water.

If other than distilled water is used there may eventually be a mineral buildup in the tank that can be cleaned out with a vinegar solution.

Jas_williams · Post by **Jas_williams** » Wed May 30, 2018 1:33 pm

I am in the UK it's really hard to get Distilled water and expensive. Just use tap water and wash out the humidifier with washing up liquid once a week and rinse well if it starts to get some limescale in it lemon juice or vinegar will dissolve the deposits.

Pugsy · Post by **Pugsy** » Wed May 30, 2018 3:08 pm

For my nasal passages the extra humidity is critical because if they get dried out I have symptoms like the worst allergy attack you can imagine.
For others it actually works the other way and they do better with less humidity or even no added humidity.
It all highly individualized what a person needs to keep their nasal mucosa happy and you will just need to play with it to see what you need or don't need.

I have only pulled the machine off the table once in 9 years. It was years ago before the water chambers were less likely to leak and I still didn't fry the electronics but you know how Murphy's Law goes. A lot depends on position it lands in and how quickly a person gets things cleaned out and dry.

Just use regular tap water or plain bottled water. The worst that will happen is a slight mineral build up on the water chamber if your water has much minerals in it and if it does it's easily cleaned with vinegar or lemon juice or similar product. Don't use anything really harsh on it though. It's not needed and you don't want to maybe be breathing residual harsh chemicals.
I don't particularly like the smell of vinegar but I have used it on occasion and then just rinsed the water chamber profusely.
I have well water where I live and it has a very high mineral content (it will kill a coffee maker in 6 months) but I have used tap water when I am out of either distilled (it's cheap where I live) and out of bottled water which is what I use in my coffee maker since it is one of those high dollar coffee makers and I don't want to be buying a new one every 6 months.

rick blaine · Post by **rick blaine** » Wed May 30, 2018 3:16 pm

Hi canyou,

I'm just curious - you say you've ordered a machine (Weds, 30th, 11.56) - usually you need a prescription for that? How did you manage to get that?

Or is it that whoever is selling you the machine has said that, in order to meet the ethical guidelines when selling without a 'scrip', you would have to do a home sleep study first?

Which they could provide - for a fee.

I see (Weds, 30th, 12.33pm) that you've had a home sleep study - didn't that provide an Apnea-Hypopnea Index or AHI? Or haven't the results come back yet?

If you've already ordered a machine, there's little point in me telling you where in the UK you can rent a machine - to use for a week or two, to see if CPAP does benefit you.

For water which you can buy easily and cheaply, and which is very soft - ie, has very low amounts of calcium carbonate and magnesium carbonate in it - and so leaves much less residue - and which is 'potable' - ie, safe to drink, and use in medical equipment - try Sainbury's still Scottish Mountain water.

canyouhearmeaya · Post by **canyouhearmeaya** » Wed May 30, 2018 3:36 pm

rick blaine wrote: ↑
Wed May 30, 2018 3:16 pm
Hi canyou,

I'm just curious - you say you've ordered a machine (Weds, 30th, 11.56) - usually you need a prescription for that? How did you manage to get that?

Or is it that whoever is selling you the machine has said that, in order to meet the ethical guidelines when selling without a 'scrip', you would have to do a home sleep study first?

Which they could provide - for a fee.

I see (Weds, 30th, 12.33pm) that you've had a home sleep study - didn't that provide an Apnea-Hypopnea Index or AHI? Or haven't the results come back yet?

If you've already ordered a machine, there's little point in me telling you where in the UK you can rent a machine - to use for a week or two, to see if CPAP does benefit you.

For water which you can buy easily and cheaply, and which is very soft - ie, has very low amounts of calcium carbonate and magnesium carbonate in it - and so leaves much less residue - and which is 'potable' - ie, safe to drink, and use in medical equipment - try Sainbury's still Scottish Mountain water.

I just had to check a box to say I had a script.. I suppose that frees them of any liability.

I haven't had the results back of my test yet, that will probably be next week. Although that was only to test of OSA as far as I'm aware. Based on what i've heard from my recordings, I suspect isn't going to come back as OSA, but I might be wrong. I'm certainly interested to see what the result says. I did the test with Intus, not the basic one, the more comprehensive one.

rick blaine · Post by **rick blaine** » Wed May 30, 2018 4:44 pm

Hello again, canyou,

You say:
"I suppose that frees them of any liability."

Kinda.

CPAP machines and masks are exempt from VAT - if you are an officially-diagnosed patient.

If you're not, then the seller is at fault for not charging you VAT, and you are at fault for not paying it. And as I'm sure you know, some sellers - to make sure they avoid their being at risk – will charge you the VAT anyway, and leave you to claim it back.

If you are buying direct from either of the two main manufacturers - Philips Respironics UK and ResMed UK - you can download a scrip form from them (which your GP can sign for you: see below). Once the manufacturers get a signed scrip form back to them, they won't charge you VAT - but they will send you an exemption declaration form to fill in and return promptly. (And they will keep that on file - for when you do business with them again.)

If you're buying from a third party, I don't know what they do. In all probability, they will have some sort of paperwork. But you should check it carefully to make sure you are covered.

In any event, and whoever you buy from, you'd be wise to let your GP know what you are doing - a letter or e-mail will do. And while you're at that, ask him or her to write a scrip for you. It can even be a hard-written note – the make and model of the machine and mask, plus the doctor's name and GMC reference number. And of course, their signature.

And if you ever have to send the original to anyone, keep a copy.

nikkwong · Post by **nikkwong** » Thu May 31, 2018 1:05 pm

Hey—

Here's my advice. I am also 26 and in otherwise great shape. I have UARS and wasn't able to get it under control until lately. If you want a cpap, and don't want to wait (I didn't) you can find people selling them on craigslist. I'm sure many on this forum would frown about that, but it worked out for me great. Docs did nothing for me so I took matters into my own hands.

For my UARS the apap did nothing though—I was only able to treat it with the apap (min pressure 13) in conjunction with a MAD—I bought this one (https://www.amazon.com/Adjustable-Mouth ... leep+apnea). I also bought a chin strap so my jaw wouldn't drop. I also use a few things for increasing the volume of my nose, etc, etc. Only with all of these items in conjunction am I able to get a good night's sleep. The MAD is the necessary piece here which I wish I tried much much earlier.

Our stories sound similar, so what I suggested may be worth trying. You can read more about my journey here: http://cpaptalk.com/viewtopic/t171596/C ... ssure.html

Good luck!

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 01, 2018 3:24 am

If the machine helps then I am definitely going to see my GP and request they write up a script.

With regards to mouth pieces, I'll certainly bare that in mind. I want to try APAP alone first as there is a possibility that it alone will be enough as it is for many, if it isn't and yet indicates there is a breathing issue, mouth pieces will be what I look at next.

Going by feel, it certainly feels like by enalrge the restriction is through my nasal passages, pulling my jaw forward and/or sticking my tongue right out (whilst I'm awake lol) doesn't seem to relief any restriction.. i.e., it doesn't feel like the air is flowing any better by doing that. Maybe that means nothing though!

Until I get the machine I'm just guessing. My observations are though that its when I nose breathe it feels like I'm restricted at times, and since transitioning from mouth breathing to nose breathing everything has got much worse. I can hear on my recordings that most of the time I am nose breathing.. Another observation was that I used to fairly often wake up with a pillow COVERED in dribble - like really soaked at times lol (gross I know). Since I taught myself to nose breathe, I've not once woken up with a wet pillow, in almost 6 months! So my body seems to be doing a good job of nose breathing, but I just feel even worse for it. Doh.

Does anyone know, if the restriction IS caused by reduced airflow through the nasal passages and not jaw/tongue related... I've ordered p10 nasal pillows, is the assistance of the machine going to overcome that? As in, if it's a physical limitation due to narrowed airways for whatever reason, does the pressure support help resolve that?

Thanks for all the help and advice so far everyone! APAP arrives Monday.

ChicagoGranny · Post by **ChicagoGranny** » Fri Jun 01, 2018 6:19 am

canyouhearmeaya wrote: ↑
Fri Jun 01, 2018 3:24 am
Does anyone know, if the restriction IS caused by reduced airflow through the nasal passages and not jaw/tongue related

Predominantly, in obstructive sleep apnea, the blockage is in the "throat". The soft palate and tongue collapse to block the airway. You can see this here - https://www.youtube.com/watch?v=-gie2dhqP2c&t=2s

canyouhearmeaya wrote: ↑
Fri Jun 01, 2018 3:24 am
when I nose breathe it feels like I'm restricted at times

You should have a consultation and examination by an ENT. On the first visit, he will perform an endoscopy of your nasal airways as far down as the vocal cords. This is an easy procedure and just takes a couple of minutes. Typical problems that are seen are enlarged turbinates and a badly deviated septum. These can be corrected easily with surgery. The results are often amazing.

The ENT will also look at your tonsils and adenoids. In some people they are enlarged and surgical removal is recommended.

The ENT may also check you for allergies. Allergies can cause the swelling of tissues in the nasal passages. There are good treatments available for allergies.

Good luck.

Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.