Desperate for advice

[DancingRT]

My sleep Quality is set to usage
My laptop does have a card reader...going to try it out...I need to get into this machine and play around.
I need to get my health back to where it was. I see so many patients say how great they felt after being put on CPAP. I want to feel that way again. This is definitly a good review for me as an RT. I work day shift, so if I am ever on the units with CPAP, I am just taking the patients off and cleaning machines...On my main unit (40 trached/ventilator patients)...the patients that do have ANY sleep/breathing disorder...my patients all have trachs and are put on ventilators (some for only at night). Put a trach and a ventilator here, and I can figure it out no problem. And on a few patients, they have phrenic pacers they use when sleeping.
A few co-workers have been good and some of the vendors as well with getting me different masks. All are about the same for me. My skin breaks down, and had the skin consultant give me things to try, but couldn't get a seal. I do like that when my sinuses flare up, the CPAP does kind of pop them open.
I even have a sheet right in front of me now I got a few weeks ago on my re-validation that has all the settings, when to use them (sleep apneas, vent assistance, lung disease, etc), calculations everything. At least at work I can play with the machines, and docs usually write the orders anyways (I need to pick up an evening shift when these patients go on). It is a real good guide for setting up these things...Will try to upload them on here...
I am really impressed with how educated you all are on these machines (even more than me)...cause so many of my patients seem not to know anything...good to see patients are really being educated well!!!

[robysue]

My sleep Quality is set to usage

You need to get your hands on the clinical manual for your machine. And change the Sleep Quality setting to On. And you need to do that SOONER rather than later.

I need to get my health back to where it was. I see so many patients say how great they felt after being put on CPAP. I want to feel that way again.

We hear you. And a large number of us have been there, done that, and have the T-shirt.

But .... some of us have taken a long time to start feeling better. It's actually a pretty rare new CPAPer who doesn't have some real adjustment problems. So what I'm trying to get at is this: You need reasonable expectations about how soon you'll start feeling better. It may take a few weeks or a few months to sort everything out and really start being able to sleep soundly with the machine. And "feeling better" usually takes a few weeks to a few months after you start sleeping soundly with the machine. You might want to read through the Success Stories sticky at the top of the forum. You'll find many Success Stories involve some real work on ironing out the problems before success finally came.

A few co-workers have been good and some of the vendors as well with getting me different masks. All are about the same for me. My skin breaks down, and had the skin consultant give me things to try, but couldn't get a seal. I do like that when my sinuses flare up, the CPAP does kind of pop them open.

Get those co-workers to show you how to get into the clinical settings and have them show you how to set Sleep Quality to On and how to check the (extensive) data that shows up on the machine's LCD once Sleep Quality is set to On.

As for the skin problems you are dealing with, what kind of things did the skin consultant suggest?

Ideas that have worked for other forum members who have faced similar problems include:

• Mask pads. Your equipment profile shows that you are using the Bella Loops version of the Swift FX mask. Padacheek sells pads that go completely over those silicone straps that are on your cheeks and she includes a small pad that covers the part of the loop that goes around the ear as well. Her pads provide a much more complete barrier between the straps and your cheeks than those silly little pads that come on the mask itself. Padacheek's stuff is well made and lasts a long time.
• Lansinoh lanolin cream. This is great for soothing sore nostrils if the skin problem is located where the nasal pillows are resting against your nostrils. Lansinoh is sold as a nipple cream for nursing mothers for moisturizing and soothing dry, sore, cracked nipples. You only need a tiny bit applied to each nostril. It is somewhat tacky/sticky when you first put it on and some people find that it actually helps get a good seal. You can also use the Lansinoh during the day to sooth the sore nostrils all day long. It also helps with super chapped lips as well. I've also had good luck using Badger Lip Balm in a tin can to help with my skin problems that are caused by my BiPAP.
• Other masks and other mask styles. In particular there is one company (Circadiance) that makes cloth masks. You may want to look into the SleepWeaver masks. The SleepWeaver Elan™ Soft Cloth Nasal CPAP Mask is a cloth nasal mask that has a fairly small footprint on the face. And it's possible that an all cloth mask might just cause fewer problems for your skin.
• Timing of the skin care routine. You may find that washing your face right before bed causes more problems than it fixes. It may be easier on the skin if you complete the nighttime facial cleaning an hour or two before bedtime so that your face is completely dry before putting the mask on.

I am really impressed with how educated you all are on these machines (even more than me)...cause so many of my patients seem not to know anything...good to see patients are really being educated well!!!

Thank you!

If you stick around this forum long enough, you'll find that many of us were extremely frustrated with how little information and help we got from the docs and the DMEs who prescribed and provided our equipment. Many of us have had to learn a lot about OSA and CPAP simply to be able to become compliant and make this crazy therapy actually work for us.

Good luck on your own journey to becoming a happy CPAPer

[DoriC]

When my husband was in the hospital and rehab I had to show the nighttime RTs and RNs how to use the machine and mask. They asked A LOT of questions. The charge nurse asked me to give the day shift the same overview. I got a free lunch!

[ems]

Hi Dancing... have you thought about the possibility that Cymbalta may be contributing to some of what you are experiencing? I realize you have a rare condition, including fibro, but I've heard of similar problems with people on antidepressants.

I hope you continue to post and let us know how you are doing.

[Janknitz]

I am really impressed with how educated you all are on these machines (even more than me)...cause so many of my patients seem not to know anything...good to see patients are really being educated well!!!

I think it's interesting that YOU thought you were locked out of the settings and that YOU could not access the data. I'll bet you've told patients hundreds of times that they could not access data or change settings. And yet, you're surprised that your patients don't seem to know anything about their CPAP.

The sleep industry (physicians, sleep clinics, staff including your fellow RT's and DME's) seems to like it that way because they have complete control, and most patients don't even realize when they are receiving poor therapy and poor care. As someone else pointed out, imagine if diabetics were treated this way--"here's a meter to test your blood sugar but never look at the readings and never tweak your insulin dose without coming in to see your doctor first--oh, and the first appointment is in two months."

The patients you see who are doing so well on CPAP are the "survivors"--they are the less than 50% of all OSA patients who do well despite the decks stacked against them with poor information, poor mask fittings, poor settings on their machines, and poor follow-up. Very few make their way here to educate themselves and become fully involved in their own care.

You are very welcome here and I would venture "you ain't seen nothin' yet" about how much we know and can help. I hope that you will take this experience back out into your professional world and start to empower your own patients to optimize their care, too.

[Jay Aitchsee]

Hello Dancing...Welcome.
Go here to the ResMed site: http://www.resmed.com/us/clinicians/cli ... clinicians. Set up your clinician's account and download the S9 Clinician's Manual (PDF) and the ResScan Software (a manual for the software is included in the software download) and you'll have the assets you need to monitor your therapy at home.
Jay

[Kiralynx]

. I have had my thyroid tested numerous times...and seems to be ok.

The question is -- what were they testing? If the result they gave you was TSH only, then they are telling you everything is fine when it may not be. There's a book and a website called Stop the Thyroid Madness which you might find of interest. Cold all the time, and sweating as well.

[DancingRT]

Sorry it took a while to respond, have been busy last few days, and now think I am getting a respiratory infection. Anyways, Someone said I should start to feel better on CPAP after a few months, I have been using CPAP since July 2013 and things only have gotten worse I try to convince and tell myself it is helping, but have put on 15 lbs since starting CPAP (and diet is the same...I eat real healthy). My energy level is a million times worse. The sweating is a million (even more) times worse. My boyfriend tells me I twist/turn, shake like I am having seizures, stop breathing, and have the tubing tight around my neck with the machine...I do NOT do this when not using CPAP (except still have few apneas). I even wake up 4-5 times a night to pee when I have that machine on...not sure why. On nights I can't fall asleep with the machine (and not sure why), I just take it off and fall asleep no problem. On my days off of work, and night where I have used CPAP, I wake up at 5am (same I get up to go to work) to feed my cat. I feel like crap, and go back to sleep with out the machine, and I am OUT COLD for 8+ more hours.
I have tried not using the Cymbalta for a period of time. There was absolutly no difference in the quality of sleep I had...and the side effects of not being on it got bad...esp. the pain.
As for the thyroid, I have been pushing this issue with many docs for a while. Prior sleep studies (before the UNEXPLAINED weight gain) showed NO sleep apnea. Just lack or no REM sleep. I am convinced there is something wrong with my thyroid. I used to compete in beauty pageants (including made it to Miss CT USA twice). I was real fit and worked out a lot and eat healthy....and put on weight and still am...regardless of what I do. All the docs tell me is work out, you are not doing it right!!! How blunt can I be when I tell them I AM getting a good cardiac workout, eating well, and STILL putting on weight...even put on 3-5 lbs when I stopped eating to just prove a point. Those 3-5 lbs were while not eating...not afterwards!!! So sick of them saying I am fat and not doing things right...I am in the medical field too...AND working with the dieticians at work and everything.
I really need to find a way to push these doctors. I am REALLY scared for my health. In the past few months, more weight gain, worsening pain, had to surgeries the I did NOT heal well from (instead of 1-2 weeks, took me 1-2 months). I am winded and slightly short of breath when doing anything physical, heart palpitations, increased heart rate (which has been "normal" for a while...100-115), and my normal BP used to be on the low side, now it is bordering high BP. My concentration and ability to stay awake at all is BAD. I was breaking at green lights the other night. I don't understand why the docs don't see this as bad???

[zoocrewphoto]

Can you post data of a typical night?

Graphs showing your events, flow limitations, leak are most important.

[robysue]

Sorry it took a while to respond, have been busy last few days, and now think I am getting a respiratory infection. Anyways, Someone said I should start to feel better on CPAP after a few months, I have been using CPAP since July 2013 and things only have gotten worse I try to convince and tell myself it is helping, but have put on 15 lbs since starting CPAP (and diet is the same...I eat real healthy). My energy level is a million times worse. The sweating is a million (even more) times worse.

I get it. Six months into PAPing and I still felt worse with the PAP than without it. And felt as though it was destroying my life.

But before PAP therapy stands a chance of doing you some good, you've got to manage to start using it consistently AND actually sleeping halfway decently with it. And you're not there yet:

My boyfriend tells me I twist/turn, shake like I am having seizures, stop breathing, and have the tubing tight around my neck with the machine...I do NOT do this when not using CPAP (except still have few apneas). I even wake up 4-5 times a night to pee when I have that machine on...not sure why.

You need to look into whether you've got PLMD. Some folks with PLMD show improvement when they start PAPing because the PLMD seems to be related to an apnea response and when the apneas go away so does the PLMD. But other people with PLMD have the PLMD symptoms become far, far worse once they start PAP therapy. It may be that with the apneas, they never get sound enough asleep for the periodic limb movements to start. And once the apneas go away on PAP, the PLMD symptoms emerge because the person is now getting just enough continuous sleep. You really need to raise the issue of PLMD with the sleep doctor.

On nights I can't fall asleep with the machine (and not sure why), I just take it off and fall asleep no problem. On my days off of work, and night where I have used CPAP, I wake up at 5am (same I get up to go to work) to feed my cat. I feel like crap, and go back to sleep with out the machine, and I am OUT COLD for 8+ more hours.

You are exhausted. And for whatever reason, your body and mind have not yet made peace with the fact that the CPAP is here to stay. So on those nights when you don't use the machine, things go back to your pre-diagnosis "normal". Of course, that's also teaching your body and subconscious mind that it's "ok" to NOT get used to the machine. If the body and subconscious screw with your sleep long enough when you are using the PAP, you'll eventually give in and let them have their way and sleep without the machine. And if you do have PLMD, then that's also added into the mix: The old, familiar OSA-interrupted sleep feels "normal" to you because that's what you've been dealing with for a long time, but if you do have PLMD, the new PLMD-interrupted sleep does not feel "normal" because it's a whole new kind of constant sleep interruptions making you feel miserable night after night.

I have tried not using the Cymbalta for a period of time. There was absolutly no difference in the quality of sleep I had...and the side effects of not being on it got bad...esp. the pain.

What kind of pain do you take the Cymbalta for? Has any other medication been used to try to manage the pain?

for the thyroid, I have been pushing this issue with many docs for a while. Prior sleep studies (before the UNEXPLAINED weight gain) showed NO sleep apnea. Just lack or no REM sleep. I am convinced there is something wrong with my thyroid.

When was the last time a thyroid test was done? Most docs will order a full thyroid panel without much "pushing". During my darkest days of early PAPing when I was feeling 100 times worse than I had before I'd started, the sleep doc's PA ordered a full thyroid panel. The first thing the psychiatrist I was referred to for "mood problems" because I was having such a tough time dealing with simultaneously fighting the CPAP-induced insomnia and the chronic migraines did was order a full thyroid panel.

Prior sleep studies (before the UNEXPLAINED weight gain) showed NO sleep apnea.
...
I used to compete in beauty pageants (including made it to Miss CT USA twice). I was real fit and worked out a lot and eat healthy....and put on weight and still am...regardless of what I do. All the docs tell me is work out, you are not doing it right!!! How blunt can I be when I tell them I AM getting a good cardiac workout, eating well, and STILL putting on weight...even put on 3-5 lbs when I stopped eating to just prove a point. Those 3-5 lbs were while not eating...not afterwards!!! So sick of them saying I am fat and not doing things right...I am in the medical field too...AND working with the dieticians at work and everything.

The dirty little secret is that the connection between undiagnosed OSA is that the correlation goes both ways. Untreated OSA can lead to metabolic changes that make it easier to gain weight and harder to lose it. So it's possible that your OSA came first and that OSA may be (part) of what's triggered the unexplained weight gain.

It's also important to understand that OSA is in a continuum of sleep disordered breathing. There are docs out there who do think that simple snoring, UARS, and OSA are all part of the same continuum. And it's possible that on the sleep studies before the weight gain that you had breathing patterns similar to UARS which did not meet the scoring criteria for hypopneas and apneas. UARS is still a bit controversial and not all labs score sleep tests in a way that UARS is detected.

I really need to find a way to push these doctors. I am REALLY scared for my health. In the past few months, more weight gain, worsening pain, had to surgeries the I did NOT heal well from (instead of 1-2 weeks, took me 1-2 months). I am winded and slightly short of breath when doing anything physical, heart palpitations, increased heart rate (which has been "normal" for a while...100-115), and my normal BP used to be on the low side, now it is bordering high BP. My concentration and ability to stay awake at all is BAD. I was breaking at green lights the other night. I don't understand why the docs don't see this as bad???

My advice?

1) You need to contact the sleep doc's office and let them know exactly what is going on each night. The problems you are having are NOT typical "newbie" problems and the sleep doc needs to know about them. There's obviously something else going on at night other than typical adjustment to CPAP problems. Insist on a call back from the doc or a nurse or a PA. And insist on seeing someone sooner rather than later. Also be sure to mention that your concentration and ability to stay awake is getting worse rather than improving with PAPing.

2) I think you need another sleep test while wearing the CPAP mask and starting out with your current pressure setting. They need to see you get tangled up in the hose and making all those twists, turns, and shaking like seizures episodes to find out what is going on when you try to use the CPAP machine. It seems like PLMD needs to be eliminated. At the same time, this will verify whether your prescribed pressure is correct or is problematic. It's also possible that since the BF says that you still stop breathing sometimes when wearing the mask that you might be in that small percentage of PAPers who develop complex sleep apnea.

3) You need to get the pain under control. That may mean getting the underlying condition that triggers the pain under control. Or it may mean working on what kinds of alternative pain medications might work better than the Cymbalta.

4) You ought to schedule a (long) appointment with your PCP to discuss the shortness of breath, the heart palpitations, and increased heart rate. Also mention that the shortness of breath (in particular) is making it hard for you to the physical activities that you WANT to do and that you ARE doing on a regular basis. Given these symptoms, it's reasonable to ask about a Spirometry/Peak-Flow test and whether a EKG or an echocardiogram might be in order. That's in addition to asking for a full thyroid panel to be done with the blood tests.