New to CPAP-NEED HELP PLEASE!

[AliciasEquineArt...]

Good Morning all,

I am new to the forums, but have been reading them for a few weeks now, since starting my CPAP and having nothing but issues.
Firstly, I guess I'm not the typical OSA sufferer, from what I've been reading... I am 26 years old, in pretty good shape- female diagnosed a few years ago with AHI-8 (mild?) and just recently decided to start with CPAP therapy. My last sleep study done last month was AHI-10 ( they said I have an obstruction 10 x per hour)

I have extreme symptoms, however, that from what I have read are typical of the severe OSA sufferers:
-extreme daytime fatigue/sleepiness
-slow weight gain that will NOT go away no matter what I do (exercise 6 days/week, only eating healthy with max of 1200 Cals/day)
-Depression (very severe at times)
-poor memory and difficulty with daily functions
-fogginess that never goes away

My life has changed dramatically in the last few years, and this sleep deprivation is ruining my life, my relationship, and turned me into an antisocial hermit.

That's me in a nutshell.

For two weeks I have been struggling with my CPAP machine -trying to get used to the different masks, raw, blistered skin on my nose, pressure headaches, tightness in my throat and even more of a lack of sleep- over the past two weeks, I have been to see the technician three times now. Well, yesterday I was there, and she downloaded the data from my CPAP and it shows that my AHI is on average AHI-17!!!!!! She showed me that even at the highest pressure which was set at 13, my airway was collapsing for more than 10 seconds. She upped the pressure to 15 now, and told me that the goal was to have an AHI-<5....

MY QUESTION IS:
Why is CPAP making my Apnea worse, rather than better?? She didn't say anything when I told her that before I was AHI 8-10.... this doesn't make sense to me...and I am still waking up gasping for breath as I was before...Even more than before...

I really want to see the benefits of this machine as others have...But I feel like things are worse...according to the data They ARE! Am I missing something here? Any one else gone through this?

Thanks for any input....

[Lizistired]

Hi and welcome. Go into the control panel and list your equipment in TEXT form. Lots of people will be able to help you here. Don't give up.

[SleepyT]

First of all....welcome! Glad you found this site. Others will post...and I'm sure you will be asked to fill in your machine data so we can all see which CPAP machine you are using...which mask, etc. You will find out where to load this info under "user control panel" at the top left of the page. And as you move along, you will want to purchase the software that goes with your machine....so we (and you) can see what's going on at night. My guess is you are having leaks...either from your mask....or out of your mouth. And this is ONLY a guess. Newbies have trouble with leakage from time to time. If that is the case..it is no wonder your AHI is still high.

As you go along it will be a matter of tweaking your therapy. Don't be discouraged! You are on the right path. All of us can relate to where you are and what you have been through....so never hesitate to post your questions and concerns....good luck!

[AliciasEquineArt]

Thanks, I think I have chosen the proper equipment...they are the "rentals" I am using, so I'm guessing they may change....

[Emilia]

Hi Alicia... first you must log in to use the forum fully. Once you log in, you will have access to the User Control Panel in upper left under search. Go to Profile--->Edit Equipment and then choose your gear from the drop down menus. Choose to show your results in TEXT, not pictures. This will list your equipment at the bottom of each post you write automatically like mine below.

Sleep studies are far from accurate pictures of one's sleep. There is nothing natural about trying to sleep all wired up and in a strange place....so, it isn't unusual for your data to be different once you are home. That said, you really need to have the efficacy data from your machine to 'see' the results of a given night and assess what is happening. If your machine is a fully data capable one, this can be done by YOU. With our help, we can guide you to understand your therapy better and help you tweak things. If your machine is not data capable, you might want to consider getting one that is.

This is a process that takes time. Some folks take to it like a duck to water and have very few problems, but most take weeks, if not months, to nail down the best mask and pressure settings. Other comfort issues such as leaks, irritates noses, etc. all have fixes that the veterans here can help you with. For starters, go to your local pharmacy or even WalMart and go to the baby aisle where the nursing products are located. Look for the purple box called Lansinoh -- pure lanolin. This product is wonderful at protecting the nares and area under the nose. It has a bit of tackiness which will help get a good seal with nasal pillows. If your mask is the kind that is irritating the bridge of your nose, or the skin around the edge, consider a mask liner. So a search for that here and you find tons of threads discussing that fix.

Good luck.... keep reading and coming back with your questions. You've landed in the best place to learn and succeed!

[AliciasEquineArt]

Thank you,
I figured out the profile thingy

I am just in the trial period where I am renting the machine, so I was not told if I can download that information or not? I am still at the stage where I don't fully understand the machine, and just that the technician has set it up for me to start at a pressure of 7, and go up to a pressure of 15.She has it locked out. I am just having a heck of a time getting used to it...and feeling so smothered (I need a full face mask as I am a mouth breather and can really not breathe through my nose- the strap with the nose pillows (?) did not keep my mouth shut and kept puffing my cheeks up with air) I just feel all the time during the day now that I am having issues breathing as if someone is constantly choking me... which apparently is "CPAP Life" according to the technician... she was sort of snobby and short with me...

Anyways, I just have this fear that the CPAP is going to cause Central Sleep Apnea or something...or I am going to die in my sleep with it on, now that it seems to have increased my episodes of Apnea...Probably overreacting, but just would like some support I guess!!

[Julie]

Maybe it's time you saw your doctor again and get checked out for whatever other physical problems you might incidentally have that could be impacting your whole system. Most of the symptoms you listed are ones that should get mostly better on Cpap, and the fact they haven't yet done so is not a huge issue, as it takes time to adjust, but why not look at other possibilities anyway, things like thyroid problems... are you taking meds for depression? Depending on what they are, they could definitely affect using Cpap and maybe they need to be either cut back or changed.

[Janknitz]

Alicia,

When you took your machine to the DME, did they just look at the info on the LED screen, or actually download your card to the computer for detailed graphs? This is very important.

You machine shows very little on the screen, only AVERAGE AHI for the past 7 and 30 days. So there are a few things that may be going on, if they only looked at these averages:

1. It MAY be that you have too much pressure. When pressure is too high, it can induce a different type of apnic event called a "clear airway" or "central" apnea (abbreviated "CA"). The software can distinguish the type of apnea you are having, and perhaps the pressure is inducing some CA's. Sometimes LOWERING the pressure will bring these under control.

2. It may simply be that you had really high AHI's the first few days of use when you were trying to figure out the mask and stop the leaking. Those bad numbers will be part of these averages.

If she did download the card to the software, did she say anything about your leak graphs? This will tell if leaking was the cause of the high AHI's and poor treatment.


You should do a search here to learn how to access the data on your LED screen (pm me if you need help with that). Ideally you can purchase software that is MADE FOR PATIENTS and will give you very detailed information, but it costs about $100. You are perfectly entitled to see this data (your DME may not agree, but so what?) and it will help you monitor andu nderstand your own therapy.

[AliciasEquineArt]

Thanks,

Julie, I have had regular bloodwork done, and everything consistently comes back normal. I have slowly reduced and a few months ago have stopped my anti-depressants, as I figured that my problems were stemming from the OSA.
My CPAP treatment has only been 2 weeks, with quite a few disturbances at night it seems, so I am hoping that once I finally get used to the darn thing then I will sleep more?

Janknitz, Yes, the DME did download the information onto her computer, and she said that I am doing considerably well as far as leaks go (There aren't many) and when it showed my apneas on the one line, on the line that showed the pressure, it was off the chart (b/c it was higher than 13) and that's when the apneas were ocurring...meaning that my pressure needed increasing to keep my airway open (This is what I gathered from what she said and showed me?)

They have the machine locked out I guess so that I cannot change anything at this stage... I wonder if the LCD will let me see anything?

I have an appt next Wednesday to see them. I just thought that there could be something in the meantime... I guess just assurance that this is normal... I'm just a frustrated and scared Newbie I suppose!

Is it common to have CA caused by CPAP? Isn't that more dangerous than OSA?

Thanks again, for all your help.

[Janknitz]

There's very little info on the LED screen, unfortunately. All you will be able to see is 7 and 30 day averages for:

AHI
Large Leak
Periodic Breathing

And usage info that's not really any surprise to you because you know how much you are using the machine.

The AHI is useful to at least tell you if you are going in the right direction with your therapy.
The Large Leak Info and Periodic Breathing are not really useful at all. It has to be a HUGE leak for a LONG time to register--you would surely know if you are leaking that much! Periodic breathing has to be serious to show up on the LED screen averages--i.e. someone with a neuromuscular disease might have something show up there.

If you go to my blog (see my signature) there is a post about data that will show you the detailed graphs your machine can produce with the software--THAT is useful information.

[dtsm]

I'm not familiar with you brand/model so difficult for me to help you download data, etc. But I do see you use a full face mask [FFM]. From my very limited experience, FFM are notorious leakers.

The #1 obstacle to getting good therapy is getting the proper mask, getting it to fit properly and minimize your leaks. For some folks, their first mask works, for others they need to try 2,3,4, or even 5 different types/brands of masks before they find just the 'right' one. It took me 6-8 wks to get compliant, and then another 3 masks and month to find 'the' mask.

See if you can convince your DME to show you the daily leak line/data to confirm it is NOT the leaks that are causing the problem. If leaks are under control, then ask what is your 95th percentile pressure? You can then reduce the range of 7-15 and 'dial' in on the proper pressure. But keep in mind this works only after you are sure leaks are not the problem.

Good luck and keep us posted.

[Janknitz]

Alicia,

A thought: Call your DME and ask for a print out of your data. It's yours, it belongs to you, but they will probably put you off and tell you you need to get it from the doctor. So request it from the doctor, too. If you make the request in writing, the doctor must comply. If you could post it, we might be able to see what's going on.

And it would be very helpful for you to see your data, if nothing else to watch what's happening with that AHI. You can do a search here for how to get into the clinician's menu and turn on that info in the patient's menu. I promise no CPAP police will get you for doing that

[cflame1]

you'll probably at some point want a copy of your sleep study as well... as this might give a clue into the centrals discussion (what you said that you were scared of). So make sure that you ask your doc for this as well (and don't settle for the doc's summary - 2 pages).

[fastwingguy]

As you can tell, Alicia, it's a lot like a "good news / bad news" joke: the bad news is that it's a bit tricky and there are many different ideas for you to work with. The good news is you have found this group, there is an abundance of support, and you WILL be able to manage your condition without surgery or drugs. Its the best deal you'll find all month !

[jazzer4]

Alicias

I don't know why your feeling like you can't breath right during the day. Maybe nerves? Anxiety? Why did you pick now to go off your anxiety meds?
Maybe they would have helped you for the first month with this.
In the beginning all this is scary. I was scared too. But now after a year it's old hat. You'll get there, it just doesn't happen overnight.
Your young and beautiful and treating your apnea if that's your problem will help keep you that way.
Try to relax with it all.
Be aware of leaks.
Watch or read with the mask on to help you get used to it.
Keep posting for support.

I know none of this will help you with your machine, but maybe it will help you relax a little and let the machine help you.
Good luck.
Susan