MIL needs help with cpap advice

[charlambe]

My mother in law had the apnea test done back in 2001 and they told her she had severe sleep apnea but when they put the cpap on her she felt like she could not breath. Recently after I was diagnosed with severe sleep apnea I told her that she needs to get tested again cause there is new machines out with cflex and all the other flex types. She told me that when she had it done back in 2001 since she could not handle the pressure they told her that she could either have the throat surgery or buy a jacket with tennis balls on it so she would not sleep on her back. I am trying to get her to go get tested again since there is better machines out there. What do you think?

[DreamStalker]

Why do you want to put her through the expense of having her tested again?

If she had severe apnea in 2001 ... she most likley has just as severe OSA if not more now.

If you want her to make an informed decision about going back on treatment ... educate her on the risks of not being treated (ie. CVD, stroke, diabetes, etc.). Most so-called sleep professionals focus on treating day-time sleepines and snoring issues and completely overlook the more significant and more dangerous issues of not being treated.

[Muse-Inc]

Might state that you now understand that apnea can be fatal, that you love her and don't want her to die, that technology has come a long way since she got her equipment, show her this forum & how she can get help to make xPAP therapy work for her (might be some simple thing she can do that makes the pressure tolerable, maybe it's a mask problem, etcetera).

And hey...welcome aboard!

[Hawthorne]

If you can get her to understand how serious sleep apnea is, then maybe you can help.

Does she have her prescription from back then? if not, can she get it? She could ask her doctor or the sleep lab where she had her sleep study.

With that prescription, she can order an auto machine with lots of newer features online. Check out cpap.com.

I'm not pushing any one machine but I have the M Series Auto with A-Flex AND the software and card reader to let me see what is happening while I sleep.

With the auto, I can set a range of pressures so I am not at a really high pressure all night and can change them according to what my data indicates. I also have a choice of 6 flex settings that I can use to make exhaling easier. Some people do better without any Flex settings but they are helpful when beginning therapy.

The Resmed machine have EPR, another form of exhalation relief. There are Resmed autos as well.

If she could get a machine with these features, she may get going on very effective therapy and save herself from a lot of terrible health conditions, as well as feel a whole lot better!

[GumbyCT]

I am wondering if maybe the machine was just not setup correctly. Maybe it started off at 4cm making her feel like she couldn't get enuff air? Gather as much info from her as she can remember and post it here. Maybe she still has her old machine? Make & model will help.

Any paperwork or sleep study info that she has will also help.

Sometimes having a close family member involved is all it takes.

[mattman]

Here is what I would suggest to anyone asking me the same question. First off the other comments in this thread about what happens to those with untreated sleep apnea will hopefully provide a decent catalyst to try treatment again. It IS serious, it IS life threatening and it DOES need to be treated. That said, if you can get to consider treatment you will want to try to get new equipment.

1) Call her PCP and see if there is a copy of her sleep study (This is the apnea test you are referring to) in her chart. If there is, see if her PCP will write a new prescription for one. If not, see if you can get an appointment with a sleep specialist and speak with them about getting a new prescription.

2) If there is not a copy of the sleep study in her chart try contacting doctor who ordered the study back in 2001 and check with them. Failing that you might also try the lab where the test was done. Basically anyone connected with the original test. If you can get a copy of the study, refer back to everything else in #1.

3) If you can get a new prescription then you can take her to a local equipment provider and take a look at some of the new machines. There have been many advances in both machines and masks since 2000-2001. She may very well find treatment far more tolerable. It's not a guarantee of course but all of us have been able to adapt. Call and speak with an equipment provider ahead of time. Explain that she's tried and failed with treatment previously and you'd really like to find someone who can possibly show her more than 1 machine and more than 1 mask. See how you feel from the phone call and choose a provider that seems most open to this. Note that insurance may restrict your choices here but often there is still more than 1 choice of providers.

4) If you cannot get a copy of the study you will have a hard time getting someone to write an accurate Rx for a new machine. This will be the hardest path of all. You may want to consider a new sleep study if it's possible. This will allow for the doctor to write a prescription and it will have the benefit of providing the most up-to-date information. This may come down to a question of time, money and her willingness to be tested again. Only the two of you can really decide if this will be feasible for you!

5) Also if you can't get a copy of the Rx you *may* be able to get a doctor to write a prescription for an auto-adjusting cpap set wide open (4-20cm). I'd really say this is the worst-case option. It's better than nothing but with settings that wide open it may be a recipe for failure again since those settings can be pretty tough to tolerate unless you are already used to treatment. But again, if all else fails it may be better than nothing!

Just my suggestions and all based on personal opinion of course.

mattman

[charlambe]

To answer your question. No, I dont want her to have to go through the exspense again. But since its been so long I would think her apnea might be even worse. So they would have to know what settings she would have to be on and a new prescription. I have always heard prescriptions are only good for a year. So that was another concern of ours. Plus the fact that the machine made her feel sufficated back then. I know they have changed cpap machines and mask now and there might be more options for her. Also the sleep lab would not let her take a machine home or order one cause of her feeling like she was sufficating. They wouldn't write a prescription in the first place. That is another reason I figure she needs to go to get a test done. I dont think the people she went to really cared or helped her enough. To tell her to go get a jacket with tennis balls is crazy. Her health is not good. Her bp is not good, her cholesterol is terrible and she has fibromyalgia as well. I have fibro and since I started my cpap my pain and life has improved so much that is its amazing. I want anyone that suffers with sleep apnea to get help because I know that you can have a much better life with the cpap. It's a miracle for me.

Why do you want to put her through the expense of having her tested again?

If she had severe apnea in 2001 ... she most likley has just as severe OSA if not more now.

If you want her to make an informed decision about going back on treatment ... educate her on the risks of not being treated (ie. CVD, stroke, diabetes, etc.). Most so-called sleep professionals focus on treating day-time sleepines and snoring issues and completely overlook the more significant and more dangerous issues of not being treated.

[mattman]

FYI - a prescription is good for 1 year. A sleep study is valid indefinately as supporting documentation and the basis for a prescription.

In other words, her old Rx wouldn't be valid anymore but if you get the sleep study that would still qualify her to get a NEW Rx today.

[DreamStalker]

To answer your question. No, I dont want her to have to go through the exspense again. But since its been so long I would think her apnea might be even worse. So they would have to know what settings she would have to be on and a new prescription. I have always heard prescriptions are only good for a year. So that was another concern of ours. Plus the fact that the machine made her feel sufficated back then. I know they have changed cpap machines and mask now and there might be more options for her. Also the sleep lab would not let her take a machine home or order one cause of her feeling like she was sufficating. They wouldn't write a prescription in the first place. That is another reason I figure she needs to go to get a test done. I dont think the people she went to really cared or helped her enough. To tell her to go get a jacket with tennis balls is crazy. Her health is not good. Her bp is not good, her cholesterol is terrible and she has fibromyalgia as well. I have fibro and since I started my cpap my pain and life has improved so much that is its amazing. I want anyone that suffers with sleep apnea to get help because I know that you can have a much better life with the cpap. It's a miracle for me.

Why do you want to put her through the expense of having her tested again?

If she had severe apnea in 2001 ... she most likley has just as severe OSA if not more now.

If you want her to make an informed decision about going back on treatment ... educate her on the risks of not being treated (ie. CVD, stroke, diabetes, etc.). Most so-called sleep professionals focus on treating day-time sleepines and snoring issues and completely overlook the more significant and more dangerous issues of not being treated.

Exactly! There is no need to send her to people who only care about emptying her wallet and insurance account and not about her health. These sleep cartels are good for diagnosing but criminal when it comes to treatment. She has already been diagnosed ... she has no further use for them.

My Rx is not for life either but it is good for 99 years ... I'm sure I could get it updated then but I just don't think I'll have to cuz they will have affordable and effective throat transplants available by then.

All she needs is to get her old sleep lab study and provide the experienced members here on the forum with the information to determine if she really needs to go back for another titration. Most likely, all she needs is to get an APAP or bilevel machine and the appropriate software ... then get her the "right" mask and her treatment can be optimized so that all of her conditions (bp, cholesterol, cvd, and yes fibro too) can be reversed for the better.

[Froro]

All of the advice given here is good and I encourage you to talk to you your MIL.

If I could offer a small suggestion? Given her concerns about feeling suffocated and such, is there a chance she could try your own machine (even for an afternoon nap type thing)

I realize her titration levels may be different from your own settings but if she can feel the benefit of flex or epr, perhaps this will help convince her that a new machine will help.

I know recently my mom tried my machine and is much more comfortable now with the whole thing. (I've been bugging her to get a sleep study)

[charlambe]

oh okay then I will see if she can't get the sleep study information to her doctor maybe she can go from there since the lab didnt help her any.