Newbie here... where to start?

[Galactus]

Hello... thank you for the welcome and the advice. I said I was "recently" diagnosed with sleep apnea just last month, but a different Dr over a year ago said I should get checked for it also, but I just ignored it. But after a year of feeling progressively worse, I went to a new Dr who said the same thing, and this time I took her advice and went for a test.

The more I read about sleep apnea the more I'm convinced that this has been my problem most of my life. Always tired, sleepy no matter how many hours sleeping, snoring, nausea, weakness. But I suspect as I've gotten older, combined with a job that now requires me to wake up at 3am, I'm just not as able to muscle through it as I did before.

Attached is a screen shot of my data according to Sleepyhead. I'll take your advice and start reading and learning about these numbers on the Sleepyhead software.

I'd appreciate any input any of you might have regarding what my data so far might mean?

Thank you so much.
Kim

I don't know as much as many here (just learning myself) but the AHI number is 9.xx, and the gold standard is 5 or below. With 15 being apnea that requires treatment. So whoever comes by and offers advice should be able to help you get down to 5 or less hopefully without much effort. My test yielded 90+ AHI so you're already doing better! Good luck.

[me50]

I don't know much about how to set the pressure on your machine as I have not had time to master my vpap. I do think that your pressure is almost wide open and that could be a contributing factor to your AHI being higher than 5. I would suggest tightening your pressure range. I am sure those that have the same time of machine that you do can help you with that. You could try 8 to 15 (or you could try 6 to 15) but I don't know how to tell you to set the IPAP vs EPAP. Someone here knows how to do that and I am sure they will be along soon to help you out. Once you make the change, I suggest not making any other changes for at least a week to see what your results are and then determine if you need to do something different. welcome!

[vsheline]

I'd appreciate any input any of you might have regarding what my data so far might mean?

Hi harleygirl, welcome to the forum!

You have a fine machine.

How does the therapy feel to you?

The max pressure delivered by the machine in the last 6 days was the same as last night's max pressure of 16.2. Are you having any discomfort from swallowing too much air, or is high pressure uncomfortable or waking you up? If not, I wouldn't suggest asking your therapist to lower the max pressure (the "Auto max" setting) at this time.

Are you having any difficulty from the minimum pressure (the "Auto min" setting) being too low? When the minimum pressure is as low as 4, many people become uncomfortable after a few days. It makes them feel like they are working too hard to inhale enough air. They find that a little higher minimum pressure makes it easier to breathe in.

Also, in your case, there is another reason for raising the minimum pressure: the 90% pressure averaged over the past 6 days was 10.3. If the 90% pressure for the most recent night was 13.3 this means that at least 90% of the time (during that one night) the pressure was 13.3 OR LOWER. It also means that at least 10% of the time the machine needed to deliver a pressure of 13.3 OR HIGHER.

All that may sound a little confusing for now, but the point is that on an average night your machine would need to spend a significant amount of the time (at least 10% of the time) around 10.3 or higher, and 10.3 is a little far from the minimum pressure setting of 4. It would likely be better for the minimum to be not as far from the 90% number. Also most of your events were of the type (obstructive) which a higher minimum pressure would tend to solve. Raising the minimum pressure setting to 6 or higher makes sense to me.

A few patients find that they feel most rested when their minimum pressure setting is nearly the same as their 90% pressure statistic, but that is a little unusual, so I certainly don't suggest asking for that at this time, but do I suggest you keep it in mind for the future because you (like everyone else) might or might not be part of that minority.

I suggest you ask your doctor or therapist to increase the minimum pressure to 6 or higher. It would be easiest for you to make this simple change this yourself, of course, but I recommend taking the time to work with your health professionals. I'm pretty sure they would be happy to change the minimum pressure to 6 or higher, especially since the minimum pressure setting is generally considered a comfort setting which can be safely raised when requested by the patient.

I recommend giving them a chance to be responsive to your needs, at least until the initial "compliance monitoring" period (usually 2 or 3 months) is over.

By the way, a pressure of 20, which is the max your machine can deliver, is actually pretty low. 20 cm H2O is equivalent to about 0.28 pounds per square inch, which is a lot less than what is needed to blow up an average balloon and way too low to be measured with a typical tire gauge, for example.

Take care,
--- Vaughn

[herbm]

The most important thing is you are using your machine 100% of the time -- at this stage that is key to getting a good start and obtaining meaningful data.

What was your diagnosed AHI? If it was very high you are getting good results since your AHI is not just a little over the (somewhat arbitrary) cut-off for having Apnea (untreated apnea), i.e., 5.0

5.0 isn't a magic number; physicians had to pick SOME number as a cut-off but anything MUCH WORSE is likely to lead to symptoms and anything much better is likely to lead to good sleep and improved health.

You are already experiencing improvements to having an AHI a little over 5 for your first week isn't a big deal.

When is your next appointment with the sleep doc? Likely if these stats remain representative there will be an increase in the min pressure.

The machine was set "wide open" at 4 to 20 (as if there was no useful information from the titration sleep study or as if the doc is using the machine to titrate you now).

Note your average pressure is something like 8 and your 90% pressure is 13+ so it's likely your doc will bring your min up somewhere in that vicinity.

One would need to go through your DETAIL (not shown) to see if you are getting the majority of your events on low pressures to confirm this however, but it's likely that when your low pressure is brought up to around 8-10 a good portion of the remaining OA events will drop out.

(As long as you don't develop more central apneas that will give you are really good score which will likely be well within the threshold of "treated".)

Remember though, you are seeing POSITIVE results in how you FEEL which is ultimately one of the biggest tests for good therapy.

Excellent start. Keep using the machine and try to see the doc fairly soon (e.g., don't delay your next appointment) to give the doc a chance to alter the settings.

[harleygirl]

Well I woke up with a headache today which was kind of a bummer. I've noticed that when I first go to sleep I have a good comfortable seal with no leaks. But later in the night I've been waking up with leaks. Seems like the seal that presses against my face starts to get wet (from the humidifier?) and then no longer stays sealed.

Do any of you have this issue and is there a fix?
Thank you

[Tez62]

harleygirl, I use the same mask and two things you can do:
1 Use maskliners, I bought some Remzzz’s mask liners a 6 pack and although they say to only use them once you can wash them and get about 5-6 uses. I then made a template of what I needed from their liners and went to a fabric shop and got 3 ft of 50% cotton/ 50 % poly fabric and cut out my own and they also last 5-6 uses, the next time I bought 3 ft of 50% cotton/ 50 % lycra fabric. That last me about 3 months and costs about ten dollars. No need to do any sewing.
2. Have the hose coming from above your head either over your bed head or you can buy or make a product called a hose lift, it pulls the mask up insrtead of down and saves you getting tangled in the middle of the night.

Give those things a go

[retired_guy]

Hi Harley,

I'm late to the party on your issues. It seems all the other guys are advising you very well, so forgive me if I cover some already covered ground.

Lots of things can cause headaches in the morning. Sinuses, too dry an environment, and so forth. One thing that can as well is if your mask is too tight. Sometimes in our exuberance to get the silly things to seal, we crank them down too much, which in itself can cause leakage, and the pressure of the tight mask overnight can cause us to wake up with a headache.

I have a Quattro, and I always thought it was a terrific mask. But I had the leak problems that would only be solved partially with a mask liner. When I attempted to solve them with tightening, the little silicone ridge at the top of the mask would end up hurting my sensitive, if not still school-boyish body. Now, I keep the Quattro on the shelf for an "emergency" and have migrated completely to the P10 pillows mask. There are a ton of reasons why that's a better choice for me than the full face mask.

Anyhow, the guys probably have been working with you on the mask fitting issues, so keep after that, but also consider trying a different style of mask.

[surferdude2]

If the leaks are big enough to wreck your therapy and are caused by excess moisture in the mask, I'd suggest not using the humidifier for a while to see if you can sleep all night without leaks and not have a headache when arising. The software will also help you see if things are going better with the AHI count.

I don't use a humidifier and am not bothered with a dry mouth so far but I'm in southern Illinois and you're in Cal. so YMMV. Perhaps setting it on the lowest setting for a test might be better, especially if you have found that you really need it. You can work back up slowly if need be. There's no big danger in trying so go to it.

Bottom line: Dry mouth is better than brain damage from O2 deprivation.

ps. Spent 36 years in Fullerton and know all about the nice dry air of cal. except down at the beach.

[herbm]

Harleygirl you don't have your pressures posted but the other issue can be a short test (at bedtime) or one on lower pressures that occur later in the night.

The ideas about mask liners above are excellent paths as well.

Do note that a LOT of problems with mask leaks are due to OVER TIGHTENING or more likely even, UNEVEN over tightening. It's a bit of an art to figure out how to get the mask "tight enough" and not too tight, but especially to get it VERY EVENLY tightened.

Some things that most people overlook once they get their mask minimally working:

1) Re-read your instruction manual guidelines for "how to adjust and tighten" your mask -- go through the process explicitly and in front of a mirror until you have learned what is recommended.

2) YouTube or other videos: Watch videos on your mask from both the manufacturer and from (the many) reviewers of CPAP equipment. (e.g. TheLankyLeft27 does good work but many other reviewers do good work as well.)

Many of these will show you tricks for making the mask fit or work better. Identify common problems with that type of mask etc.

[Doc J]

Hey Harleygirl, welcome. Sounds like you have got a good start and are getting good advice so far. The two best things you have done are really using the machine and finding this resource to learn. It may seem like a lot of info at first but you can figure this out over time and know you are working toward the best treatment possible. Once you are dialed in the daily info will not be as important but it is nice to be able to see what is going on and not waiting for a month for someone to read it and find problems.

So I trust the benefits will show up soon, and there may be bumps in the road but keep up the good work.