What to do while waiting for CPAP

I've been running on empty for a while now and a few days this week I have felt like the walking dead - no energy at all.

I've been diagnosed with severe sleep apnea, had my second study done for CPAP titration settings, but now have to wait 4-6 weeks for results and prescription. I know I had 462 events over 4 hours during my first test and my oxygen level started at 87% before I even went to sleep. I also know that in my first study I never did reach level 3 or 4 of sleep.

Along with LOTS of research and a few posts on here what can I do before I get my CPAP to help sleep with some degree of quality? I've ordered a data logging oximiter that I should have next week to give me some idea of my oxygen levels for comparison.

I know I usually sleep 100% on my back and have recently tried sleeping on my side (right and left) but seem to wake up more tired in the mornings than nights I sleep on my back. So far this week I have stayed home from work 2 days due to complete exhaustion and bad headaches.

Any suggestions of what may help for the next few weeks while I wait to get on a CPAP machine?

read... make sure that you know which machines have full data and which do not. Do not accept a machine without full data.

Well when I was waiting for my machine they told me to get a wedge pillow to sleep on. Or to somehow elevate my bed. I bought a wedge pillow and got my machine a few days later.

tschultz wrote:I've been diagnosed with severe sleep apnea, had my second study done for CPAP titration settings, but now have to wait 4-6 weeks for results and prescription. I know I had 462 events over 4 hours during my first test and my oxygen level started at 87% before I even went to sleep. I also know that in my first study I never did reach level 3 or 4 of sleep.

You have to wait 4-6 weeks for results of WHAT? It sounds like you have the results of your diagnostic study (i.e., 462 events over 4 hours, etc.). Are you talking about your titration? I can't believe they'd make you wait that long considering they should have your titration results at the end of the titration night!

You could: sleep in a recliner so you're more upright, sleep on a wedge pillow (Bed, Bath & Beyond has an inexpensive one) or elevate the head of your bed, and/or sleep on your sides (although not everyone has positional apnea, so it doesn't guarantee anything).

If it were me, I'd be on the phone complaining to my doctor about any delay, and subtly alluding to threats of liability to whoever is holding up this process (e.g., "So you're saying that my apnea is severe, my oxygen saturation is inadequate even before I go to sleep, and you want to me to wait 4-6 weeks before giving me a CPAP? Just so I can document this for my next of kin, what was your name again? Please spell it for me. OK, S-M-I-T-H. And your first name? Please spell it. OK, so <reading off your paper> on December 23, 2010 at 10:12am, I spoke with Jane Smith at XYZ Co., who told me that I will have to wait 4-6 weeks for my CPAP machine. I reminded her that my apnea is severe and my oxygen saturations are sub-par even when I am awake and she said, 'Too bad, so sad, gotta' go, you Schmo', ...).

If it was me, I'd try sleeping exclusively on my side....get yourself one of those body pillows so you can hold on to it, and also having the lower end sit between your knees to help support your hips. If you have a recliner chair or reclining sofa seat, you should try to sleep there so you can help prevent your tongue from falling back in your throat. Use Breath Right strips to help open nasal passages....

With numbers like yours, I am very surprised they didn't give you an auto cpap loaner to use with a broad pressure range to help you until your report is fully analyzed and the Rx is written. You might inquire if this can be arranged.

In the meantime, this forum is a treasure trove of information. Read, read, read..... also look at the wiki (top, yellow lightbulb) for great information. In preparation for the inevitable DME fun and games, you should read the blog post by one of our forum members on what to expect and how to handle that situation: http://maskarrayed.wordpress.com/what-y ... me-part-i/

Good luck, and keep us posted!

tschultz wrote:I've been running on empty for a while now and a few days this week I have felt like the walking dead - no energy at all.

I've been diagnosed with severe sleep apnea, had my second study done for CPAP titration settings, but now have to wait 4-6 weeks for results and prescription. I know I had 462 events over 4 hours during my first test and my oxygen level started at 87% before I even went to sleep. I also know that in my first study I never did reach level 3 or 4 of sleep.

Along with LOTS of research and a few posts on here what can I do before I get my CPAP to help sleep with some degree of quality? I've ordered a data logging oximiter that I should have next week to give me some idea of my oxygen levels for comparison.

I know I usually sleep 100% on my back and have recently tried sleeping on my side (right and left) but seem to wake up more tired in the mornings than nights I sleep on my back. So far this week I have stayed home from work 2 days due to complete exhaustion and bad headaches.

Any suggestions of what may help for the next few weeks while I wait to get on a CPAP machine?

It is beyond unbelievable why doctors don't provide patients like you with a temp Rx for oxygen while waiting for your machine.

I'd suggest doing some reading up on your health insurance policy too.

How much does your insurance pay for durable medical equipment? How much does it pay for the supplies for durable medical equipment? How often does it replace the equipment or its supplies such as masks and filters? What happens if your first machine does not work out and your doctor decides that you have a medical need for a different machine? How does it define compliance? Which durable medical equipment suppliers (aka DMEs) are "in network"? Which are "preferred"? Will you have a choice of which one to use?

If you have a choice of DME, now is the time to find out so you can start comparison shopping. Once you know what ones you can use, start calling around and asking questions about what machines they routinely provide to their customers. What their mask exchange policy is. Whether they have a respiratory therapist on staff all the time or only some of the time. Whether they focus on CPAP equipment or whether they're a more general kind of DME. Feel out what their customer service is like. And if there is a DME that's not too inconvenient to actually visit, try to stop by and look at some machines and masks and ask some questions if you can.

You might even want to look in the phone book under CPAP equipment and see if you can find a smaller DME that specializes in CPAP equipment and talk to them and ask them if they work with your insurance company. That's how I found the smallish, WNY-regional DME that I use: It was not on the list my insurance company reluctantly gave me, but I stopped by after seeing their ad in the phone book and noticed their address was right on my way to work. When I gave them my insurance card and ask, "Do you take this insurance?", they said they said did. And the price they cited was exactly the same deal that had been quoted by the DME's on the list the insurance company gave me. But there was a big difference: The DMEs I called all wanted to set me up with a non-data machine, and CPAPXpress gives all their customers a choice of a ResMed S9 AutoSet or a PR System One Auto as the standard CPAP machine. Both are nice, full data APAPs. Both of these full data APAPs are billed to the insurance company using the same code as the non-data CPAP machines the other DMEs wanted to sell me. During my first visit to CPAPXpress, they also let me look at masks and they answered a whole bunch of questions. And they did NOT push me to make a decision right away. I really liked that. I think I wound up going back about a week later and placing the order for my first S9, which has now been replaced with a PR System One BiPAP Auto---that I also got from them.

The more you know about buying (or renting) the equipment under the rules your insurance company uses as well as selecting the equipment that you want to use, the more likely you will wind up with a CPAP machine that you will be happy with.

Eat healthier, exercise regularly, and lose weight.

tschultz wrote: I've been diagnosed with severe sleep apnea, had my second study done for CPAP titration settings, but now have to wait 4-6 weeks for results and prescription.

Who diagnosed you? Why cannot that person write you a prescription for CPAP RIGHT NOW? It should not take 4-6 weeks for this?

My recommendation is that you call your doctor DAILY to see if there is a cancellation. Do whatever you can to get in to get your Rx and your equipment as soon as possible.

I agree with those who say to push the issue and try to expedite things, and to please not be so desperate as to accept a non-data machine. You have a lot at stake and you want to know if your treatment is not therapeutic for any reason.

In the meantime, I'm wondering if one of the sport mouthpieces might help keep your jaw from slacking back while asleep. Not sure if it would help or not. Just brainstorming. Avoiding alcohol and sedatives while untreated would be wise. If on any prescription meds that could be contributing, talk to your doctor. Not sure of the docs you're involved with, but whoever referred you to this sleep center needs to know your concerns. They can probably light a fire, and they need to be evaluating your low oxygen level even separately from your sleep study if it was low before sleeping. I'm thinking maybe engaging another doctor who will then need to call them for results will get that ball rolling pretty quick.

Edit: If you use a recliner, It's likely best to not recline it past the first position, just enough to get the legs up, the more upright the body the better. Even then, be in tune to your posture, as many recliners allow you to sink into them, and the top rounds out like a pillow pushing the head forward. In that type I have to put a thin pillow behind my mid/lower back to maintain good posture. I must be careful my head does not tilt back or face upward at all, and put a c-shaped neck pillow under the front as a chin rest to be sure my head doesn't fall forward. Also, some recliners hit the legs in such a way as to have pressure points. Better to put a pillow under them than wake up with big indentations and maybe cause more trouble. Sorry to be so detailed, but if I leave out even one detail it affects my night.

OK, good suggestions given, esp re the LONG wait! Meanwhile, go buy yourself a recording oximeter and set it to alarm when your oxygen levels drop so you will wake up and breath deeper to stop the oxygen-starvation. I'd be on the phone daily to my doc to find out what progress has occurred. If you can afford it, figure out which full-data device you want and buy it. Immediately call and ask for a copy of your sleep study; by law, it's your right to have a copy (they can make ya pay for copying it tho); it should have the data that says what pressure(s) stopped events and if you had any central apnea events, any leg movements, normal heart rhythms, normal brain waves (even if panicked when your O2 dropped and during events)...all helpful info that will help determine the pressure. If it were me, I'd go for an autotitrating CPAP machine, commonly called an APAP. It delivers pressurized air based on your preceding few breaths; if your breathing becomes irregular in one of the patterns it recognizes as a precursor to an apneic event, it will raise the pressure attempting to abort the presumed impending event...so these devices are set to a range of pressures within the 4 and 20 cm of pressure they can produce.

Good luck and wecome aboard!

I agree with getting your own if it is an option for you if your best efforts to speed things up don't work. If you can get someone to reveal at least what your recommended pressure might be it would be helpful. I'd just hate for you to get a machine then find out your pressure needed is 20 and then you had centrals. Could change the type of machine you need.

YOU: Squeeeeak, Squeeeeak, Squeeeeak, Squeeeeak, Squeeeeak, Squeeeeak...
DOC: Somebody grease that wheel before it drives me crazy!

Call them every day and best of luck to you!

Why wait? Why not order express from CPAP.COM and check out their holiday specials.

I was diagnosed in September and was told I would see the sleep specialist in December to discuss treatments. I was, told by the tech, how severe my sleep apnea was after the PSG.

Feeling that 4 months was much too long a wait for treatment, I made an appointment with my GP and complained about it. My GP phoned the sleep doctor while I was in his office, got my pressure setting and wrote me a prescription on the spot. He advised me to "shop around" for a Provider. I had my equipment within a few days.