Discouraged--Need some encouragement

TiredMommy · Post by **TiredMommy** » Fri May 04, 2007 1:50 pm

Well, I hate to sound like a whiney hiney, but I am feeling really discouraged. I have been on therapy for almost 6 weeks now, and to be honest, I don't feel any better. I am still extremely tired and sluggish. I feel like I can't get enough sleep and it's starting to get to me.

I have a couple of mask issues. Started out with the Activa Mirage and chinstrap, but couldn't get used to the chinstrap (too hot), so switched to a ff mask. That presented it's own problems--too many leaks. So, I switched back to the nasal mask and tried taping my mouth. That didn't work because it caused pretty bad skin irration. So....

I don't know if my mouth comes open during the night or not. Sometimes I think that it does and other times, I think I am dreaming it. I think about it and it I think that it is invading my dreams.

What happens when you mouth does open during the night. I would assume that it affects your therapy, but I don't know exactly how.

Also, I'm going to my doctor on Tuesday, 5/8. I will ask a whole bunch of questions and hopefully, get some answers as to why I'm not feeling any better.

Thanks for letting me rant a little. I just want to feel better SO BADLY. It's been so long and I am sick and tired of feeling like this.

Sleepy-eyes · Post by **Sleepy-eyes** » Fri May 04, 2007 2:01 pm

Whine all you like! There's nothing about this therapy that any of us would call "fun"! I've been on my machine since last September and have yet to notice a difference in how I feel. Sorry, but that's just a fact. I haven't lost any weight. Haven't lowered my blood pressure. Still am yawning all day long. And my gray hair hasn't turned back to brown.

What has changed, though, is the number of hours I'm sleeping a night. I went from 3 and 4 hours of horrible sleep with the machine, to an average of 8 1/2 hours a night. My AHI has dropped from waaaaaaay up there to below 1.0.............with many, many nights in the 0,2 to 0.5 range. If I'm staying that low, I must certainly be getting treatment for my OSA, and that's what all this is about!

Complain all you want. Time will come when it's not all that bad. And who knows, you might even begin to enjoy sleeping again.

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Wulfman · Post by **Wulfman** » Fri May 04, 2007 2:02 pm

My guess would be your mouth is still coming open at night. Do you experience dry mouth?

Yes, if you're mouth is coming open at night it definitely affects your therapy.

Which full face mask did you try?

Did you try Polident adhesive strips to seal your lips?

Den

JimInAL · Post by **JimInAL** » Fri May 04, 2007 2:05 pm

If you open your mouth while using a nasal mask, it will be recorded as a leak. If the leak is large enough it can make your treatment ineffective.

You didn't mention anything about checking the data your machine records on the smartcard. If your profile is correct, your machine stores information about leaks, apnea events, etc.

If you don't have the software and card reader you need to check the smartcard data, your doctor or the DME where you got the equipment should be able to help you out.

One question I'd suggest asking your Dr. is "How can you/we tell if my treatment is effective or not?" followed by "If it's not effective, how do you/we know what to change?"

If he's not looking at the smartcard data, he's going to have a hard time knowing what's going on with your treatment and how to improve it.

TiredMommy · Post by **TiredMommy** » Fri May 04, 2007 2:08 pm

Wulfman--

Yes, I have an extremely dry mouth when I wake up. I did try the polident strips, but they were too messy. I have really thin lips and the strip hung over alot in my mouth as well as my lips.

The FF mask that I have is a Ultra Mirage. I used it for a couple of weeks, but, I could never get a good seal and the leaks would actually wake me up during the night.

I am thinking about the nasal pillows, but the DME told me that with my pressure (17/13), it would be too high for the nasal systems. I don't know if that is true or not.

Thanks for any input.

Guest · Post by **Guest** » Fri May 04, 2007 2:10 pm

Like Den suggested, I would try the Polident strips. I've used them, and they're non-invasive. A little gooey when you are ready to take them off, but the thought of tape doesn't appeal to me - maybe they'd work for you, too.

Have you checked on the effect of your 10 foot hose on your treatment? Just a thought, but if it is not taken into account, you might not be getting enough pressure to treat your apnea.

I think your machine records data, do you have a means to look at it? The folks here seem pretty helpful when it comes to interpreting it if you have questions.

Good luck, and hang in there. I'm sure it'll get better.
Cathy

TiredMommy · Post by **TiredMommy** » Fri May 04, 2007 2:14 pm

Jim in AL--

I do have the smart card data, but I don't know how to read that. I have looked on my machine and my leaks aren't that high. With the FF mask they were, but now with the Mirage, the reading is 3.2 on the readout on the machine.

Guest--

I've thought about the 10ft hose too. Maybe the pressure isn't high enough with it. HHHMMM! The reading on the machine says 90% 16.9/14.0. Also, the AHI is 3.7.

Thanks for the replies.

linda b · Post by **linda b** » Fri May 04, 2007 2:15 pm

Do you have any other health issues that could be affecting your oxygen levels, such as COPD? If, even with CPAP therapy, your oxygen levels drop too low at night (below 89%), you may need to have supplemental oxygen added to your therapy. I know it makes a great deal of difference for me.

Snoredog · Post by **Snoredog** » Fri May 04, 2007 2:16 pm

there can be MANY reasons why you are tired during the day:

The most obvious one is we are NOT getting the sleep we need at night.

With that said, you have to determine WHY you are not getting the sleep you need at night.

With OSA, they address "Obstructive Sleep Apnea" events. They do that with the xpap machine and the uncomfortable mask. So once they address those events what are you left with?

Well, that is when you drag out the original diagnostic PSG. This is no time for your doctor to be or play a know-it-all hard ass, they need to share that COMPLETE PSG report with you. They need to hand you a copy and go over it from top to bottom.

You would need to educate yourself on what shows up on a PSG in order to "know" if what your doctor is telling you is accurate or not. Some of these doctors have no idea how to read a PSG. Guess where that leaves you when you are 100% compliant on the machine?

Well it may leave you with PLMD's or RLS (Periodic Limb Movement Disorder, or Restless Leg Syndrome), a syndrome where it can cause arousals during your sleep. These NON-OSA events can interrupt your sleep just as easy as obstructive sleep apnea events can. So you are on CPAP 100% compliant, it may do NOTHING in eliminating these other events. If your doctor "ignores" that data then they look at you like you got rocks in your head.

It is only when you have a copy of your PSG that you can say hey, what are those spontaneous arousals and PLM's on my report? Can they cause interruptions that impact my sleep? You bet they can. Now your sleep doctor has to do their job, it is so damn easy for them to ah those are insignificant and send you back and forth to their office for visits.

Here is the best thing I can suggest:

1. Obtain the complete copy of your diagnostic PSG that your doctor received. If they won't share that with you, get a new doctor or one that will.

2. Write down each and every medication you may be taking on paper, including the dose, at what time you take it and how often. Research the side effects of these medications and make sure your sleep doctor has a copy of that list. Ask them if they see any problems with the medications you are taking. Certain medications can cause interruptions to your sleep just as easily as muscle-skeletal pains can such as from arthritis.

3. Look closely at the amount of time you spend sleeping. Ideally, you need 9-hours of sleep. Not 7, not 5. If you are only getting 4hrs of sleep on the machine, could be why you are tired during the day.

4. Lastly, there are other disorders that can cause daily fatigue in addition to the 100 different sleep disorders. You can have a tumor, anemia, or other autoimmune disorder that can also cause daytime fatigue. Even allergies and medications you may be taking for it can cause the fatigue.

Educate and arm yourself with knowledge and don't rely on your doctor for all the answers. Because of the way insurance and laws are they sometimes even hand-tied in what they can offer.

TiredMommy · Post by **TiredMommy** » Fri May 04, 2007 2:18 pm

Linda--

I don't have COPD or any other health issue that would affect my oxygen levels. I know that when I had my 2 sleep studies, the Dr. said that my oxygen levels dropped pretty low, but he didn't put me on oxygen with my Bi-pap. So, I don't know if my oxygen levels are too low with therapy or not.

That's a good question that I am going to ask Tuesday.

Thanks!

stages3n4 · Post by **stages3n4** » Fri May 04, 2007 2:22 pm

What happens when you mouth does open during the night. I would assume that it affects your therapy, but I don't know exactly how.

The purpose of the air pressure is to keep your airways open, if the air is going in your nose, and your mouth is closed, the pressure will build in your throat and keep the airway open. IF, the air is going in your nose, and your mouth is open, the air will take the easy way out, exit through your mouth, and not keep your airway open and you will have the apnic events we are trying to avoid.

Hope I wasn't too technical.

TiredMommy · Post by **TiredMommy** » Fri May 04, 2007 2:24 pm

Snoredog--

Thanks for all of the info. I am trying to get educated on the whole OSA thing, but there is just so much stuff out there.

First of all, I don't know what a PSG is. What is that?

Also, I think that my doctor is pretty good. I haven't seen him very many times. Tuesday will be my 1st visit since I started therapy.

I do plan on writing down a bunch of questions and hopefully, get some answers.

Thanks for the input!

Wulfman · Post by **Wulfman** » Fri May 04, 2007 2:43 pm

I hadn't cross-checked your machine.....and just caught on to the fact you are on Bi-PAP (also saw the pressures in your response to me).

A "PSG" is a polysomnogram......essentially the report from your "sleep study". Like Snoredog said, you need to get them to give you a copy of it so YOU know what you're dealing with in terms of your sleep apnea and whatever else they show on that report.

As far as your oxygen levels while on therapy, you can get your doctor to order an overnight pulse-oximetry test (it's free) through your DME.

You also need to discuss your mask situation with them. The UMFF is a little "iffy" at higher pressures, but has been known to work if properly sized and adjusted. It sort of depends on facial structure, too.
Mouth leaks are also gonna mess up your therapy.

Den

rested gal · Post by **rested gal** » Fri May 04, 2007 2:45 pm

TiredMommy wrote:I am thinking about the nasal pillows, but the DME told me that with my pressure (17/13), it would be too high for the nasal systems. I don't know if that is true or not.

The DME is wrong. Many people using high pressures are able to use nasal pillows masks just fine. For example, "Titrator" (Ted) used bipap at 19/16 and used the Breeze with nasal pillows for several years.

I have to put a homemade strap around just about any mask I use, even though I use much lower pressure than you were prescribed. You might need to use a homemade strap around the nasal pillows area -- not to make the pillows withstand the pressure, but simply because a little extra "hold" across the front of nasal pillows can help keep them from shifting when a person turns over.

As the others have mentioned, if you're getting massive air leaks out your mouth while sleeping, the leak rate can get high enough that the machine can't compensate to keep the pressure up. But even if the leaks out of your mouth don't reach "Large Leak" status, intermittent puffs of air leaks could disturb your sleep, causing arousals that don't wake you all the way up but could be bouncing you up out of whatever stage of sleep you were in, into a lighter stage.

Arousals from the equipment problems themselves and mouth leaks can leave a person feeling even more tired than before cpap. That can be very discouraging, but just keep working through one step at a time, to figure out what's interfering with treatment.

If you are actually mouth breathing during your sleep and are not wearing a Full Face mask to cover nose and mouth together...then the problem is more than just air leaks. Mouth breathing without a FF mask means the cpap air is being blocked off -- the cpap pressurized air is not being breathed in at all.

"I have been on therapy for almost 6 weeks now"...
You're trying hard, I know; but, until you get all the pieces of the equipment puzzle in place -- mask that suits you, leaks under control, feeling comfortable wearing all that 'stuff' -- I wouldn't start counting yet.

Start counting how long you've been using CPAP after you get those things sorted out.

P.S. Be aware there can be other health issues (and medication side effects, for that matter) that leave a person feeling tired and worn out even when cpap is doing its part of the job perfectly keeping the airway open so you can breathe at night.

Sleepy-eyes · Post by **Sleepy-eyes** » Fri May 04, 2007 3:07 pm

rested gal wrote:You're trying hard, I know; but, until you get all the pieces of the equipment puzzle in place -- mask that suits you, leaks under control, feeling comfortable wearing all that 'stuff' -- I wouldn't start counting yet.

Start counting how long you've been using CPAP after you get those things sorted out.

rested gal is right, Tired Mommy. Machines, pressures, masks, head pillows, chin-straps, mouth sealing..................this entire therapy is like a jigsaw puzzle. Just keep hanging in there and you'll get it figured out. It already sounds as if you are getting some sound advice from some of the most knowledgeable people on the forum.

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