Newbie needs support-2 days w/o sleep!

one more thing..

Do you get good seal between your nose and the nasal mask cusions. If air is leaking and no amount of tweaking or adjustment helps then you should try a different size cusions to see if you get better seal. The mask should have come with small, med, or large I would think. You should not have to tighten the mask to much and still get good seal. You can quickly insert different nose cusion, put mask on, and switch on machine. Is the fit better yes/no. If not try the next size. In 30 minutes you know which cusions are best for you and give you the best chance for sleep.

If you open your mouth with a nasal mask the air will escape from your mouth and you will not be getting therapy and this will wake you up. Make sure you keep your mouth closed during sleep even if you have to use tape. you can do a search on taping mouth and find all sorts of info about here.

Bottom line is you need sleep some after 2 days. If you can't get the mask to fit right, can't sleep again, and are completely overwhelmed I would either:

A: take a sleeping aid with CPAP - the idea is the sleep aid helps you relax even though CPAP is bothering you right now because things are not optimally set yet.
b: not use CPAP tonight but sleep on you side or stomach. do not sleep on your back!! as this position is bad for apnea.

Then tomorrow go to your dr and insist on trying different masks to find the one that most comfortable for you. My preference is a full face mask because even if I open my mouth during sleep (which I do) I still am getting therepy.

OMG,
You poor thing, they just left you out in the rain with no umbrella, shame on them!

First of all you need to get some sleep.. and if you have to NOT use the machine for a night or two, do it..

You can practice it with it when its "nap time" during the day.. just put it on, try to watch tv with it on..
If you can get at least an hour or hour and half, it will make a big difference that night.. practice daily if you can..

It takes some "work out" sessions to learn to breath AGAINST the pressure, even at six, some people are sensitive, its a struggle,
the air is coming in before youre ready, and you didnt finish your exhale right? You can develop those muscles..

I ripped my mask off at pressure five and couldnt handle that when I started.. Dont feel rushed, you have had apnea for a long time,
and that is why you went thru all you did with all those other diagnostic issues. FINALLY you arrived at is probably the root of everything..

You do need to get a mask you like, Im very fond of my nose pillow mask, you can click on the icons of mine below this paragraph, and
they will pop up on the screen.. I use the opus 360 headgear, its very light and comfy and they have small nose pillows if you have
tiny nostrils too..

So you need someone to help you.... do you have a handy friend who is tech savy? Or are you good with all the manuals.. ???
The machines are designed to try to make it easy for you to get used to them..
They have RAMP features, which means if you have that set to ON, it will gradually reach your optimal pressure (your titrated pressure)
the pressure they discovered in your sleep study where the pressure prevents your airway from closing.. it is the lowest number that will work for you..
Find out what that is.. Also, the machines have an expiration relief, this can be a -flex, c-flex or EPR... if you are a beginner, you certainly
want that function enabled.. the ramp feature and those are YOUR TRAINING WHEELS.. so if those are not set to function on your machine, you
just got thrown to the wolves without a stick.. Im so sorry nobody explained ANY of this to you.. that happened to me as well, and I almost quit
the first night.. if not for these wonderful people here..
YOU dont have to make this all work perfectly in the next day or two, so take a deep breath. I know youre exhausted.. The sooner you CAN get
this to work, the better you are going to feel.. it might take some time, because you have a lot of sleep to catch up on.. years of sleep you
have missed, who wouldnt feel awful? Thank goodness you have been diagnosed! Demand whoever set you up, do it properly..
Its going to be okay, doesnt seem like it now, but it will be.

elena

Your frustration is understood. But you must stay with it. Perhaps the mask is not fitting properly. The supply company / rep can play a biger role.
Based on your diffuculty @ just the time of falling asleep, perhaps you need a mask that covers your mouth & nose. Intimidating idea, but possible. Check with the Dr. that analyzed the study. This is on on-going process.

You can make it work & get beter results. Stay with it.

Listen to Elena,
She has a wonderful way of explaining it. She is one smart cookie and has helped me a lot already.
I tend to take the bull by the horns and not let go.
If you can sleep without the mask it's okay. Try again in small spurts.

It really seems overwhelming right now, we all know how that feels. It's not fun. It doesn't feel good, but there is light at the end of the tunnel and I promise it's not a train!!!

Keep your chin up...you have suffered so much all ready, but you have a husband and two wonderful kids that need their mommy. Don't forget we're here for you.
Blessings,
Shar:)

Quick possibly related question----Does anyone take anti fatigue meds during the day? My doctor at the sleep clinic prescribed Provigil. I take it as soon as I wake up, usually around seven AM. But I seem to have insomnia where I can't fall asleep earlier than about two AM. Without the Provigil I fall asleep several times during the day leaving my toddler unsupervised. I've also been in two minor traffic accidents because I've fallen asleep.

Should I maybe discontinue the Provigil right now?

Eeegads girl. Provigil is for narcolepsy and if you are falling asleep and getting in accidents without it I wouldn't stop it!
Shar puts on nurses cap...Narcolepsy is the medical condition of falling asleep without warning for short or long periods....Shar takes off nurses cap.

I did talk to my pharmacist friend and she suggested going back to the doc(or calling) and seeing if you could get the dose decreased. It sounds like it's working too well if I read your email right. It's staying in your system too long if you're taking it at 7am and can't get to sleep until 2am. Remember its one of those drugs that you don't want to stop cold turkey.
I'm not an MD and you should always check with your doc but that's my story and I'm stickin' to it.
Shar:)

I just wasn't sure if my falling asleep struggles are from the Provigil or from sleep apnea induced insomnia, ya know? I had troubles falling asleep before 2AM before I ever started Provigil, but I wonder if it's contributing. I'm just....confused.

Desperate_in_DM wrote:2 hours of sleep last night. Just as I finally fell into a comfortable sleep WITH the mask, the toddler awoke 2.5 hours early. I'm trying to find someone to take the toddler today, but my husband is currently activated with the military and my sister, who lives in town, has a meeting she can't miss. I don't really know anyone else who could help. Waiting for 1 person to call back...

Cflame1 (Nicki?)---I couldn't help but see that you were living in Iowa? What part? I am in Des Moines and have been using the Mercy Sleep Clinic in Clive. Their sleep clinic has their own respiratory home store, but the lady who helped me seemed very distracted by my whining toddler (babysitter fell through). Anyway...I was just wonder if you might go to the same clinic and thought if so, you might have some suggestions/insight on the clinic/home store.

Actually... I'm in West Des Moines... use a different clinic (Dr Zorn's office) and use a DME out of Johnston (New Path Sleep Solutions). I like them alot (though it's cheaper to use cpap dot com).

I can try to help.

Desperate_in_DM wrote:I just wasn't sure if my falling asleep struggles are from the Provigil or from sleep apnea induced insomnia, ya know? I had troubles falling asleep before 2AM before I ever started Provigil, but I wonder if it's contributing. I'm just....confused.

Oh honey,

One thing at a time..

one thing I learned is not to change a bunch of things when you add the cpap.... listen to hospice angel, you should speak to your doctor about
deceasing that medication when the time is right.. this is like a giant puzzle you have on the table, and several pieces fell on the floor under the sofa..
When you get ALL the pieces together, youll know what is causing what and why..
That medication could be causing your insomnia, but also OSA can cause it too.. the habit of suffocating every night can cause your subconcious
to actually be AFRAID to go to sleep.. it can take time to get over that..... also, your body gets shot with cortisol, and that can keep you on edge as well..
It can make you a frazzled tangle of nerves.. this osa is nasty stuff, you are so lucky you have been diagnosed..
But first things first.. you are running on empty.. get some rest so you can make a map of where you want to go.. what is first..
finding the right mask? having your machine set properly? checking your medication levels? getting a little sleep without the machine, then practicing with it? Whatever you think will be easiest, YOU start there.. you have little ones, their steps are small but they get places face... you take some baby
steps too.. okay?

hang in there.. as someone said, this is not a race, its a journey.. and for most everyone, they find the pot of gold at the end of the rainbow, which
is a precious night of wonderful sleep..

What a difficult time. I remember those days before diagnosis and the early weeks of treatment. Getting support here gave me just enough hope to hang on till things began to improve. It will be good for you to access the data to look for any clues. I know you need help NOW, but try to take things a step at a time based on information that supports any changes. The mask leaks are so very important. Resolve those and your next step should become more apparent.

I don't know if you were given an appointment 6 weeks out because that was the next available slot, because that's really how long it takes to get the results, or because they hope you'll have had time to adjust and will get some meaningful data. Maybe you could call and ask what is the absolute soonest the doctor can have your results, and ask if they will call you with any cancellations so you can get in sooner. Also, ask if you can take your data card to the DME and have them take a look and see if there's anything obvious in the detailed data that needs to be addressed.

But all that said, I really think you can't know how well you'll adjust UNTIL you are sleeping with a mask that works for you. A leaky mask can keep you so bothered you notice everything and don't get a chance to get sound asleep. Until that happens, you might check for tips on here for your type of mask. Sometimes just a sling tied around the mask made of soft material like the leg of a pair of tights or a strip of an old t-shirt can give just enough stabilization to stop the leaks. If you do decide to reinforce the mask, be very sure it cannot slip and block your mask exhaust. That's VERY important. (Made that mistake early on. ) Also, if your hose is tugging on your mask it can contribute to the problem.

Wishing you a speedy adjustment.