Newbie 30 days and struggling

Hi Everyone.

First I want to say how helpful this board is for people just researching and looking for support.
I have been reviewing posts on this board for about 3 months now, since my sleep apnea test. The test showed an AHI of 47, which explained why I would suddenly get dizzy while driving or at my computer at work. I have been trying multiple masks so I think I finally have one which works best for me. I want to say thank you since reading the items in this board helped me get this far.

While trying masks and fighting with insurance (another battle), the compliance report showed an average AHI of 11 for my first 25 days. I know this is better - lower number and all but I am still having trouble at work. This can be very disconcerting as it feels like my system just shuts down and I have no control. Has anyone had this experience and so long after they start therapy? Unfortunately, the sleep doctor cannot see me for another month - he was so booked up in June, September was the first opening he had.

Thanks In Advance (TIA)
Melissa

Welcome, and I hope we can help you. You said you get 'dizzy' at work - do you mean actually dizzy vs just tired/sleepy and out of it? The distinction is very important because if you're just half asleep you should be treating your 'apnea', but if you're dizzy (room or you going around and out of whack) then you must see a neurologist as you could have some kind of problem such as Meniere's (inner ear) problem or true vertigo.

If you have spells where you suddenly become SOOO sleepy you just drop off with almost no warning (you mentioned 'no control'), you could have narcolepsy, which is related to apnea, but must be treated differently. I'm worried that your doctor isn't necessarily giving you the attention you might need - or else your description of things isn't so hot.. . If you can't get in to your doctor right away, consider going to the ER or finding another doctor to refer you to a neurologist right away if possible to sort out what's actually going on.

For the record, what Cpap machine (full name & model #) are you using (is it an S9 Autoset?) and do you know what the pressure settings are? 11 may be an improvement over your test results, but it's otherwise not really as good as it should be even for a newbie.

Sorry, I thought my machine had been saved in my profile. I have a REMStar Auto A-Flex (DS-560) and it is set to 10 cm H2O.
I need to adjust my profile....

But in the meantime, I guess dizziness may not be the appropriate term. It feels as if I am fighting to keep my eyes open. In the end, I drop off to sleep when I do not want to. My sleep doctor is a neurologist so I can bring it up when I next see him.
Melissa

Hello and welcome. Being overcome by sleepiness is not unusual for one whose sleep apnea is not yet under control. It sounds like your settings will need adjusted to optimize this treatment for you. You should not have to wait to see the doctor to address this. You can ask whoever provided your machine if they can send your data to the doctor and ask for further instructions. Or you can work with info provided on here to do it yourself. Your AHI is nowhere near acceptable, and there's no logical reason with a machine that provides the data your provides that you should have to wait to improve things.

Some thoughts when a range of pressures is not effective:
* If the pressure you reach during the night is bumping up against the top of the set range, the upper number might need increased to allow for more pressure.
* If the pressure you reach during the night is a lot higher than your starting pressure, the lower number might need increased so that it doesn't take as long for it to increase to an effective level to prevent events.

Just dealing with these two possibilities alone may be all you need to resolve your issues. Your machine data will tell you if these factors are at issue. Of course there can be variables or exceptions to these approaches, so please accept them as generalities. Persons with central sleep apnea or some lung diseases shouldn't raise their upper pressure without more info to go on, and preferably a competent doctor's guidance. Once you get your treatment optimized and get plenty of good sleep for a while, if the sleep spells aren't improved, you may want to ask your doctor about narcolepsy (as was already mentioned). Odds are it won't be needed, but good to have in the back of the mind just in case. Also, are you on any meds known to cause sleep attacks? I was on a dopamine agonist for my jumpy legs and it caused me to have sleep attacks. Hard to tell the difference sometimes between a sleep attack and being overcome by sleepiness due to poor sleep. But you'll be able to sort it all out. Start with getting your pressures to an effective point.

mpcousin wrote:Sorry, I thought my machine had been saved in my profile. I have a REMStar Auto A-Flex (DS-560) and it is set to 10 cm H2O.
I need to adjust my profile....

Hey Melissa... the equipment listing here is *SUPER* confusing.

if you've got a 560, the proper line for the machine is

PR System One REMStar 60 Series Auto CPAP Machine.

and the PR System One 60 Series Heated Tube Humidifier....

You would benefit from downloading free software either Sleepyhead or Encore. Then you can put the SD card from your 560 into your computer and view your data. This will provide more info than you can imagine for a newbe.
Once you have your data, you can ask questions here to decipher your data and make some adjustments to optimize your therapy.
You have an Auto PAP set to a fixed pressure. Since that is not working well I would set a range, minimum and maximum, after looking at the data. Perhaps 8-12 bracketing your current fixed pressure of 10.

Thanks everyone for the advice. Where can I find information on resetting my machine? The DME set the machine and the instructions are curiously missing all the setting instructions

I will be changing my machine information so it is set properly. It is easier for someone to answer my questions if I have the right equipment identified.

mpcousin wrote:Thanks everyone for the advice. Where can I find information on resetting my machine? The DME set the machine and the instructions are curiously missing all the setting instructions

I will be changing my machine information so it is set properly. It is easier for someone to answer my questions if I have the right equipment identified.

Here

http://www.apneaboard.com/adjust-cpap-p ... tup-manual