Real problems -- don't know where to turn

[hopeless]

HI-

I have sleep apnea -- severe I guess -- that "requires" a BiPap and full face mask. Only I can't wear the mask because, apparently, not breathing is better than enduring the mask. At least that's how I interpret the fact that I continuously take it off in my sleep and only put it on when my husband can't deal with the snoring and wakes me to tell me to put it back on.

On top of that, some months ago my machine broke and the doctor would 't provide a new prescription because he said the sleep study I did was too old. A new sleep study would be required. Now, I've done 3 sleep studies in my life and managed to sleep through 1 of them. I had the third one last night and slept for 45 seconds (during which I had 2 incidents).

I don't want to see the doctor again. I really don't like how non-responsive and bureaucratic they are. And I'm sure they don't want to see me because I can't deal with how the whole procedure is designed to make you as uncomfortable as possible and then expect you to sleep when sleep is your presenting problem.

In case it's material, here are my specific problems in getting to sleep in a lab:
1) I sleep in the nude; being constricted by fabric is too annoying, disturbing and foreign
2) I sleep with a TV on all night; when I wake up I choose a favorite old movie from Tivo and I'm back to sleep in minutes
3) the wires that make moving impossible
4) the labs all seem to have those foam mattresses that feel like sinking into wet oatmeal
5) if being confined by all the wires isn't enough, an adult having to ask permission/assistance for a drink of water or a pee is obnoxious
6) the little red light on the finger oxygen monitor is distracting and obnoxious
7) the microphone or whatever it is that they tape over your mouth is obnoxious
I'm a woman with a significant amount of hair and they always end up gluing hair in my face.

At this point I'm more or less resolved that I will die of a heart attack or a stroke in the middle of the night and that's almost as acceptable as not having to subject myself to another sleep study but I'm not the only issue here -- I make my husband's sleep difficult and I LOVE the man! So I need help to get this thing sorted out.

I'd be so grateful for any alternatives you guys know of. Thanks in advance.


PS I once had an in-home sleep study

[ozij]

Hi "Hopeless" - could we start with a different nickname? Hopeless sound so... well, you know.

And after all, there are so many experienced people with so many tips here, that maybe you will find some hope...

I can understand your not wanting to see that doctor again - the way you tell it, it sounds he's very much into power struggles -- but do give him a chance to discuss that sleep study with you.

Do you have your old prescription? You can use it to order a machine online - it's the insurance companies that demand a retest before they pay for a new machine.

Trouble shooting therapy means you need a machine that is fully data capable, one that records the breathing interruptions as well as the time you sleep, so don' buy a machine like the one you have, before you know what yours is capable of.

When you take off the mask -- is that consciously or unconsciously?

By the way, dieing of a stroke may not be so bad subjectively. It's surviving it, without being able to talk, or control your sphincters that may become a living nightmare for you and your loved ones.

[xenablue]

I too sleep in the nude (have for 40+ years), but I bought some Simply Vera Wang jammies - capri bottoms, tank top - the fabric is divine - soft, thin and cool, but not see-through in any way - worked for my SS.

Cheers,
xena

[hopeless]

The doctor didn't see any point in discussing such a non-conclusive test either. He was perfectly happy to cancel the consult.

When I take my mask off I do it unconsciously.

I never had the old prescription. The doctor directed it to the DME and isn't willing to provide a copy or to renew it. Meanwhile, the DME is simply a salesperson who has little interest in what my difficulties are. He's sure he's providing high quality equipment based on the doctor's instructions and whatever difficulties I'm having are my problem so I have no particular confidence in what he'd do for me either.

Sorry the name is disconcerting but I've lived with this issue for about a decade with little practical relief.

[HoseCrusher]

Hopeless, you need to answer a couple of questions.

1. Do you love yourself?

2. Do you love your husband?

As we age, we sometimes forget to be flexible.

We also tend to loose the ability to view the big picture.

I have nothing nice to say about the sleep lab experience. I decided to "endure" it because I love myself and understand that it will provide information that will help keep me healthy.

Wearing a mask and using an xPAP machine is like wearing clothes. It is anoying, restricting, and so on. However, there are benefits to both me and my wife.

It is decision time...

Do you love yourself?

Do you love your husband?

Demonstrate the love you have for yourself and your husband by working this issue out. We are here to help, but you will have to do all the work.

[LSAT]

Regarding your prescription and sleep study report......Your doctor MUST give it to you according to the Federal Medical Portability Law...You paid for it.

Get another doctor and ask for a "in home" sleep study with an Auto CPAP machine rental. The results along with your old sleep study results should give your new doctor enough data to prescribe the proper pressure for you. He should also give you an updated prescription.

[Guest]

HoseCrusher-

I take your point and that is why I presented myself for another sleep study. However, presenting yourself and submitting to the wiring up, etc. and actually being able to sleep in those circumstances are different issues, no?


LSAT-

I've contacted my referring GP to see what options there are for me and I'll pursue what he comes up with.

My first sleep study was in-home. That's one of the ones I couldn't sleep through.

[msradar65]

Ok this is not going to be nice...time to put in the big girl panties....stop making excuses and gitter' dun! Its ONE night. That one night could make a major difference in the rest of your life...as far as quality of life for you and your family.

Just stop whining about it...try to plan to make it as comfortable as possible and as successful as possible...and move on.

I have been here...apprehensive about the testing...then the results and what this means to changes in my life. I even tried skipping wearing CPAP because I was concerned what others would think.

After night terrors, jumping out of bed, fighting in bed..and other unpleasant things that happened...and feeling crappy when I skip wearing my CPAP....I have learned my lesson. I wear my CPAP..and those who can't deal with it...they will just have to get over it.

I am going to do what it takes to make sure I have done my part to stay healthy and have a long productive life.

[HoseCrusher]

HoseCrusher-

I take your point and that is why I presented myself for another sleep study. However, presenting yourself and submitting to the wiring up, etc. and actually being able to sleep in those circumstances are different issues, no?

Yes, much different, but still something that needs to be endured... and if possible, made the best of.

[archangle]

First, register for an ID on this board. It's free and you'll get no spam.

Second, fire that doctor. If you've had problems with sleep studies before and he didn't give you some sleeping pills to take just in case you can't sleep, he's incompetent and a danger to your health. If he didn't go ahead and write you a new prescription since you're a known apnea sufferer, he's a danger to your health.

Third, any doctor can write a prescription for a CPAP machine. Maybe your GP will help, maybe not.

How long ago did you get the old CPAP machine?

Does anyone know how to file a formal HIPPA complaint against a doctor for not giving you a copy of your prescription?

[BleepingBeauty]

Sounds to me like your "real problems" are all attitude issues. (Not saying they're NOT real problems to you, but they're all fixable with an attitude adjustment.) If you can wrap your head around the diagnosis and the treatment, you'll be halfway to success. The rest of the way is getting the right machine and mask, adhering to the therapy, and dialing in the parameters to give you the best sleep possible.

All of that can be done, but you have to do your part to get in the right frame of mind. Time, patience and perseverance are key.

There's no need to be "hopeless" now that you're here. This is a fantastic support forum, and members will help you all they can. Hang in there.

[robysue]

Hopeless,

First to reiterate important points raised by others:

Hi "Hopeless" - could we start with a different nickname? Hopeless sound so... well, you know.

It's easy to fall into the trap of self-defeat with CPAP. Attitude is important, but alas, it's also not as easy to switch on and off as we'd like it to be. But start by making a conscious decision to trade in the negative self-fulfilling prophecy for a potentially positive one: Allowing yourself to believe that you MIGHT be able to make xPAP work for you---with some hard work on your part and lots of loving support from your hubby.

By the way, dieing of a stroke may not be so bad subjectively. It's surviving it, without being able to talk, or control your sphincters that may become a living nightmare for you and your loved ones.

Truer words about OSA, strokes, (and heart attacts) are seldom spoken: Do you really want your hubby to have to deal with your incapacitation if you survive a massive stroke?

It is decision time...

Do you love yourself?

Do you love your husband?

Demonstrate the love you have for yourself and your husband by working this issue out. We are here to help, but you will have to do all the work.(emphasis added)

xPAP requires work, there's no way around that. And if you've been using a biPAP for ** years with little or no relief, then you've got even more work to do: Unlearning bad habits, relearning good habits that you've forgotten, and learning even better techniques for making this therapy work for you all require hard work on your part. Hopefully hubby can provide some of the emotional support you'll need in tackling the issues once again---support that starts, but does not end with, his prompting you to put the mask back on when you take it off in your sleep.

And if you cannot find the strength within you to make it work for the sake of your own health, then use the morbid picture of your hubby spending the better part of his retirement years tending to your basic bodily functions for a decade or more after you survive a massive stroke to find the necessary strength.

As to how to get the new machine that you so desperately need:

Idea 1: Change sleep docs, sleep labs, and DMEs. It sounds as if you've had a decade of substandard care with the ones you have. So fire them and start over with a new medical team. This might also allow you to more naturally move to where you can mentally start over in terms of attitude towards the hard work to make xPAP work for you.

Idea 2: I'll be honest, I think you do need a new one since you've had a decade of less than satisfactory therapy. When making the appointment for the new sleep study that you so badly need, ask to make an appointment to be shown the facilities to make sure they are as comfortable as possible. The beds in all four of my sleep studies were queen size beds with high quality mattresses for example. It's worth mentioning that you've been through three unsuccessful sleep studies and specify WHY they were unsuccessful. It won't hurt to ask if the tv could be left on all night since that's how you sleep, for example, since the worst they can say is "no" and you're already expecting that. More about this later.

Idea 3: If you absolutely cannot abide the thought of another sleep study, you can ask your primary care physician to write you a prescription for the machine. It might help if you could tell the doc what your settings were though, since that's a major point of having the prescription as far as DMEs are concerned.

On to your specific problems with dealing with the sleep study. You write:

I can't deal with how the whole procedure is designed to make you as uncomfortable as possible and then expect you to sleep when sleep is your presenting problem.

Tons of medical tests are uncomfortable. And in some of them you are supposed to do something while being uncomfortable. Although, I admit, it is very difficult to get to sleep in the artificial environment of a sleep lab.

In case it's material, here are my specific problems in getting to sleep in a lab:
1) I sleep in the nude; being constricted by fabric is too annoying, disturbing and foreign

As xenablue points out, you are NOT the only person to sleep in the nude. Her trick of buying some nice new PJs might help. Or use the biggest, most wornout undershirt from hubby--that way you'll have his familiar scent to surround you. And, as disturbing as it is, you could try practicing sleeping in a big t-shirt for a few days before the sleep test.

2) I sleep with a TV on all night; when I wake up I choose a favorite old movie from Tivo and I'm back to sleep in minutes

When setting up the sleep test, be sure to give them a full picture of your sleep habits. When you arrive for the test, again tell the tech running the test that you are very worried about your ability to sleep without the TV on all night. While I doubt a lab will have Tivo, most will have cable TV in the room. It won't hurt to ask if you can leave the tv on all night. Or consider bringing an iPod or mp3 player and asking to use that all night. I did on my third test: I simply told the tech that I slept with Geogorian chants all night and that I thought it would make me sleep better. She hesitated a bit, but then relented.

3) the wires that make moving impossible

We have ALL been there and done this. Yes, the wires are nasty. But again, it is a medical test. At least the wires are on the outside. And other medical tests have their own annoying impossibilities to deal with. You get as comfortable as you can (which isn't much), you decide that if you do pull a wire off, it's not YOUR responsibility to get it fixed: The tech can come in and fix it. So feel free to roll around a bit and get as comfortable as you can. For me, the killer was one of the sensors designed to pick up rapid eye movement. It was glued on my temple and every time i turned on my side it was like sleeping with a pebble embedded in my skull; but eventually I got the pillow in a position to minimize my discomfort.

4) the labs all seem to have those foam mattresses that feel like sinking into wet oatmeal

Check the lab's facilities out BEFORE making the appointment. All four of my tests were done on beds with high quality mattresses. No wet oatmeal feeling at all.

5) if being confined by all the wires isn't enough, an adult having to ask permission/assistance for a drink of water or a pee is obnoxious

Obnoxious yes. Unique to sleep tests, no. The fetal monitor the OB nurses insisted I had to have during my two delieveries was equally confining and it was far more embarrassing since those same nurses were much less willing to listen to my requests. So adjust the attitude: It's not that you need their permission to get a drink of water or to go pee---you just need them to come in and unhook your wires. It's that simple. And to tie stuff back to why you need to get on top of making the therapy work for you: If you find it obnoxious to have to ask to be unhooked in a sleep study to go to the bathroom, how much worse will it be if you wind up incapacitated by a stroke and you need your husband and medical aids to change your adult diapers because you are no longer continent.

6) the little red light on the finger oxygen monitor is distracting and obnoxious
7) the microphone or whatever it is that they tape over your mouth is obnoxious

Methinks you are being a bit too prone to look for things to complain about here: Other than the series of sleep tests, what is THE MOST SIGNIFICANT and PAINFUL medical test or procedure you've ever had to endure? Because the discomfort involved in sleep test is pretty much at the annoying, but not outright painful- level. And if you sleep with a TV on all night long, I don't really see how the light on the finger's O2 monitor can be all that distracting and obnoxious. The microphone hook up? Well, it was less of a bother than the mask itself for me.

I'm a woman with a significant amount of hair and they always end up gluing hair in my face.

[/quote][/quote]Try putting your hair up in a ponytail before the they start gluing the sensors on. And after everything is glued on, but before you're hooked up, take the ponytail out and let your hair be free.

In conclusion: You can do this---if you make up your mind to do it. If you are really worried that you will be completely unable to sleep---and you've got good reason to worry about that given your last sleep study---then you should also consider asking about taking an Ambien or other sleeping pill the night of the study. Most labs will work with patients who know they will have a difficult time getting to sleep and staying asleep the night of the study. You just need to find a lab that is willing to work with you.

[proctor78]

Hi,
I am new to cpap and my dme said it is a make it or break it with cpap and the most IMPORTANT thing is your ATTITUDE.....
Can't could never do anything... Just my opinion

[Janknitz]

Ok this is not going to be nice...time to put in the big girl panties....stop making excuses and gitter' dun! Its ONE night. That one night could make a major difference in the rest of your life...as far as quality of life for you and your family.

Just stop whining about it...try to plan to make it as comfortable as possible and as successful as possible...and move on.

Well said, MsRadar!

Hopeless, there's no way around this, particularly since you need a BiPap. A home study and titration will not do, and you'll be stuck with a non-BIpap machine that ultimately will not work for you. So you absolutely need a split night sleep lab study--ask your doctor for whatever meds you need to get through it and do it.

If it's any consolation, there have been vast improvements in new machines and masks, so that with work and the right attitude, you should be able to get over removing your mask in your sleep.

[Madalot]

In case it's material, here are my specific problems in getting to sleep in a lab:
1) I sleep in the nude; being constricted by fabric is too annoying, disturbing and foreign
2) I sleep with a TV on all night; when I wake up I choose a favorite old movie from Tivo and I'm back to sleep in minutes
3) the wires that make moving impossible
4) the labs all seem to have those foam mattresses that feel like sinking into wet oatmeal
5) if being confined by all the wires isn't enough, an adult having to ask permission/assistance for a drink of water or a pee is obnoxious
6) the little red light on the finger oxygen monitor is distracting and obnoxious
7) the microphone or whatever it is that they tape over your mouth is obnoxious
I'm a woman with a significant amount of hair and they always end up gluing hair in my face.

Everybody (and I do mean everybody) has more trouble sleeping in the lab than they do at home. It's a given and your concerns aren't unique to you.

I sleep in the nude too, but sucked it up and found a pair of PJ's that was manageable. If you think wires make moving impossible, try having a neuromuscular disease that makes moving WITHOUT wires difficult, then add wires to it! And you're not asking PERMISSION for a drink or to pee, but asking for ASSISTANCE. Red light is easy -- put your hand under the covers and close your eyes. There was nothing OVER my mouth, but under it. A little uncomfortable, but in the scheme of things, not a big deal. Hair glued to your face? The labs usually offer showers so you can get it out right away, but for me, I can't shower there because I'm disabled, plus I have a two-hour drive home to get that crap out of my hair.

I've done 3 studies in the last year and a half. If I can suck it up and get through them, you can too. So instead of finding reasons NOT to do it, how about saying why you CAN?