CPAP ALTERNATIVES?

HELLLLP ME!

I'm desperate, so I'm going to get right to the point.

I'm Marissa. In 2005, I was injured in Baghdad, I was blown out of my vehicle which resulted in a traumatic brain injury (TBI) and bilateral below the knee amputation. About 4 years ago, I had a pretty terrible fall that resulted in me being wheelchair bound for over a month. It put me back to square one with my pain tolerance for walking and I started to put on weight…. the more weight I gained the more depressed I became, the more I ate…. the more I gained weight, the more depressed I became. (See there this is going?)

SURPRISE! I developed Obstructive Sleep Apnea. I had a sleep study over two months ago and I tested positive for it, for some reason it took over a month to get those results, which then took more than a month to get back to my primary care doctor…. who took more than a week to get a hold of me and get me in for an appointment, only to tell me that because of my TBI, she can not prescribe me a CPAP, but actually needs me to come in for a second sleep study.

FINE, I will come in for your second sleep study even though the first was BY FAR my most miserable experience on record…, OH BUT WAIT, what is that you're saying? I HAVE TO WAIT UP TO EIGHT WEEKS? YUP! She has to send a referral for approval, which can take up to 5 weeks. Then once I have the approval, it can take up to 3 MORE weeks to get me in for an appointment.

I simply can not wait that long to get restful sleep. I feel like it is getting worse, even though it is probably not. I wake up every day more and more tired regardless of how much I've slept, I'm falling asleep watching tv, I'm dizzy all the time, I'm confused more often than not, I can not concentrate, I am so easily overwhelmed that I can't get myself to even start house work because I can't figure out where to start…. can anyone tell me any tips or tricks that I can use to help me get some restful sleep sooner rather than later. I know it won't be as good of a quality of sleep as it would be with a cpap, but anything is better than what I'm getting now.

Sleepless1 wrote:HELLLLP ME!

I'm desperate, so I'm going to get right to the point.

I'm Marissa. In 2005, I was injured in Baghdad, I was blown out of my vehicle which resulted in a traumatic brain injury (TBI) and bilateral below the knee amputation. About 4 years ago, I had a pretty terrible fall that resulted in me being wheelchair bound for over a month. It put me back to square one with my pain tolerance for walking and I started to put on weight…. the more weight I gained the more depressed I became, the more I ate…. the more I gained weight, the more depressed I became. (See there this is going?)

SURPRISE! I developed Obstructive Sleep Apnea. I had a sleep study over two months ago and I tested positive for it, for some reason it took over a month to get those results, which then took more than a month to get back to my primary care doctor…. who took more than a week to get a hold of me and get me in for an appointment, only to tell me that because of my TBI, she can not prescribe me a CPAP, but actually needs me to come in for a second sleep study.

FINE, I will come in for your second sleep study even though the first was BY FAR my most miserable experience on record…, OH BUT WAIT, what is that you're saying? I HAVE TO WAIT UP TO EIGHT WEEKS? YUP! She has to send a referral for approval, which can take up to 5 weeks. Then once I have the approval, it can take up to 3 MORE weeks to get me in for an appointment.

I simply can not wait that long to get restful sleep. I feel like it is getting worse, even though it is probably not. I wake up every day more and more tired regardless of how much I've slept, I'm falling asleep watching tv, I'm dizzy all the time, I'm confused more often than not, I can not concentrate, I am so easily overwhelmed that I can't get myself to even start house work because I can't figure out where to start…. can anyone tell me any tips or tricks that I can use to help me get some restful sleep sooner rather than later. I know it won't be as good of a quality of sleep as it would be with a cpap, but anything is better than what I'm getting now.

Hi, Marissa, and welcome. Sorry to hear of all your troubles. The delays you're experiencing aren't exactly the norm, but they're not unheard of. I think that, if I were in your position, I would pester the insurance company to move quickly to get you set up, since they're the bottom line re: approving of the service you need.

That said, there are a few things you might consider doing in the meantime. One is try not to sleep on your back, as apnea is usually worse in that position. Or try to sleep more upright (like in a recliner or by raising the head of your bed). Or, if you really don't want to wait and are sure you need treatment NOW (and if you can afford to), you can purchase a lightly-used machine on a site like CraigsList or from a forum member here who has one to sell. Many of us have taken our treatment into our own hands and have ditched the sleep doctor altogether, so it's possible to do this yourself. You just need to educate yourself about apnea, its treatment and options, etc., and you're in the right place to do that if you want to.

FWIW, my brother experienced a TBI 40+ years ago, and he's successfully treated his apnea for over 10 years now. Not sure why your doc wouldn't let you do the same... The second sleep study she's requiring is likely a titration (where they try to determine what your pressure needs will be with a machine), but you *can* do that yourself with a good machine and the ability to read the data it produces. There's lots of help to be had here re: every aspect of treatment, including reading and monitoring your data and making appropriate small changes to your therapy if/when needed.

My advice is to get a copy of the detailed study report from your already-completed sleep study (not just the summary report, but the graphs and details, too - probably several pages) and read all you can here. (You're entitled to a copy of that report under the law.) You can then take pics of the detailed report, blacking out any personal info, and upload the pics to a photo-sharing site (like flickr or photobucket); from there, you can post the images here on the forum for members to help you further.

HTH, and good luck.

Thank you for your service. I agree with Bleepin' (what's Bleepin' stand for.... wait,I don't want to know!). Make sure you get a used autoset machine that provides data... like a Resmed S9 autoset. You can set the lower pressure at 8 and the upper at 20. We'll help you. Your machine will "hover" around the pressure your body needs for treatment. Your second sleep study was to see what pressure you need to treat the apnea. Educate yourself... and we (I) will help you thru this.

Sheriff

The problem with me using a CPAP (as far as the doctor said…) is that if a certain part of my brain was injured in my TBI that using a CPAP at a wrong pressure could basically trigger my brain to not signal my lungs to breathe?

As in, my brain won't tell my lungs to exhale, so I will stop breathing… and not like a normal person with sleep apnea does, because someone with a normal brain without a tbi will wake themselves up if they stop breathing. My body just won't ever get the signal to inhale/exhale (supposedly, possibly… but only if a specific area of my brain was damaged in the blast).

I definitely don't have to worry about sleeping on my back…. EVER! I have completely ended ever getting comfortable in that position for any length of time for myself by completely ignoring any and every issue I've ever had for the sheer sake of not wanting to be told I could not do something. ((Why are we so stupid when we are young?)) I'm paying for it now, but it's not too bad. However, lying on my back will usually involve about an hour of trying to get me (force me to be) sitting upright and it won't actually happen without tears and loud cries of pain. So I avoid laying on my back like the plague.

As far as the machine, how much do those cost? What if the doctor really wasn't just talking out of her ass to make me leave and it really could trigger my brain to stop signaling my lungs to inhale/exhale? Would a BiPap be the way to go just in case?

Thanks both of you. I'm really just trying to get some freaking sleep. I'm miserable.

Sleepless1 wrote:The problem with me using a CPAP (as far as the doctor said…) is that if a certain part of my brain was injured in my TBI that using a CPAP at a wrong pressure could basically trigger my brain to not signal my lungs to breathe?

As in, my brain won't tell my lungs to exhale, so I will stop breathing… and not like a normal person with sleep apnea does, because someone with a normal brain without a tbi will wake themselves up if they stop breathing. My body just won't ever get the signal to inhale/exhale (supposedly, possibly… but only if a specific area of my brain was damaged in the blast).

I definitely don't have to worry about sleeping on my back…. EVER! I have completely ended ever getting comfortable in that position for any length of time for myself by completely ignoring any and every issue I've ever had for the sheer sake of not wanting to be told I could not do something. ((Why are we so stupid when we are young?)) I'm paying for it now, but it's not too bad. However, lying on my back will usually involve about an hour of trying to get me (force me to be) sitting upright and it won't actually happen without tears and loud cries of pain. So I avoid laying on my back like the plague.

As far as the machine, how much do those cost? What if the doctor really wasn't just talking out of her ass to make me leave and it really could trigger my brain to stop signaling my lungs to inhale/exhale? Would a BiPap be the way to go just in case?

Thanks both of you. I'm really just trying to get some freaking sleep. I'm miserable.

Hi again. Re: your brain not telling your body to breathe, that's an issue that some of us apnea patients have to deal with, called central apnea (called Central because it involves the central nervous system). Obstructive Apnea is when your airway tissues collapse, making it physically impossible to breathe; Central Apnea indicates that the airway is open, and you're *able* to breathe, but your brain doesn't signal your respiratory system to do so. When you get your sleep study report, see if any central apnea is noted.

If you *do* have central apnea to deal with, there are specialized machines to treat it. I use one called a BiPAP ASV (Adaptive Servo Ventilation) which *forces* me to breathe when my brain doesn't signal my body to do that. These machines can (and do) raise the pressure a lot more (and a lot quicker) than any "regular" machine. (Don't confuse a BiPAP ASV with a regular BiPAP; they're not the same thing.)

FYI, when I was first diagnosed, I was given a plain old CPAP machine (and one that didn't even provide any data beyond my compliance, or usage, to satisfy the insurance company that was paying for it). About 18 months into it (and not feeling the relief - nor the help from my sleep doctor - that I expected), I found this forum, joined, and started telling my story. I got a lot of help from forum members who knew what was what. They looked at my posted sleep study results and saw how many central apneas were noted, and I was advised that I likely needed a more sophisticated machine to treat my apnea (both obstructive and central). My sleep doctor at the time wouldn't consider that, so I then embarked on a search for (and finally found) an ASV machine from CraigsList. Took me about six months to find one I could afford (they're very expensive machines), but it was worth waiting for. I've been getting really decent therapy with it.

And the rest, as they say, is history.

It's good that you don't ever sleep on your back. That's one hurdle cleared.

As to what a good used machine costs, that's really very variable. You can often pick up a used APAP (Auto pressure-adjusting) machine for less than a couple of hundred bucks. The type of machine I use used to sell online for thousands of dollars, but I was patient and got my first one (used, on CL) for just a few hundred. Just a warning: Most folks selling on CL think the machine is worth a lot more than it actually is, especially if the machine is an older model.

If you actually have a prescription for a machine, you'll have more options re: buying used (like http://www.secondwindcpap.com, which is a reputable dealer online). If you don't have a script, you're on your own and will have to rely on sites like CL or perhaps someone reputable on the forum who's got a spare machine to part with.

And just so you know, most machines will run well for thousands of hours. (Like boat engines, it's the amount of hours they've been used that gives you an idea of just how "used" they are, not the time that's passed.)

HTH

BleepingBeauty wrote:
Hi again. Re: your brain not telling your body to breathe, that's an issue that some of us apnea patients have to deal with, called central apnea (called Central because it involves the central nervous system). Obstructive Apnea is when your airway tissues collapse, making it physically impossible to breathe; Central Apnea indicates that the airway is open, and you're *able* to breathe, but your brain doesn't signal your respiratory system to do so. When you get your sleep study report, see if any central apnea is noted.

If you *do* have central apnea to deal with, there are specialized machines to treat it. I use one called a BiPAP ASV (Adaptive Servo Ventilation) which *forces* me to breathe when my brain doesn't signal my body to do that. These machines can (and do) raise the pressure a lot more (and a lot quicker) than any "regular" machine. (Don't confuse a BiPAP ASV with a regular BiPAP; they're not the same thing.)

FYI, when I was first diagnosed, I was given a plain old CPAP machine (and one that didn't even provide any data beyond my compliance, or usage, to satisfy the insurance company that was paying for it). About 18 months into it (and not feeling the relief - nor the help from my sleep doctor - that I expected), I found this forum, joined, and started telling my story. I got a lot of help from forum members who knew what was what. They looked at my posted sleep study results and saw how many central apneas were noted, and I was advised that I likely needed a more sophisticated machine to treat my apnea (both obstructive and central). My sleep doctor at the time wouldn't consider that, so I then embarked on a search for (and finally found) an ASV machine from CraigsList. Took me about six months to find one I could afford (they're very expensive machines), but it was worth waiting for. I've been getting really decent therapy with it.

And the rest, as they say, is history.

It's good that you don't ever sleep on your back. That's one hurdle cleared.

As to what a good used machine costs, that's really very variable. You can often pick up a used APAP (Auto pressure-adjusting) machine for less than a couple of hundred bucks. The type of machine I use used to sell online for thousands of dollars, but I was patient and got my first one (used, on CL) for just a few hundred. Just a warning: Most folks selling on CL think the machine is worth a lot more than it actually is, especially if the machine is an older model.

If you actually have a prescription for a machine, you'll have more options re: buying used (like http://www.secondwindcpap.com, which is a reputable dealer online). If you don't have a script, you're on your own and will have to rely on sites like CL or perhaps someone reputable on the forum who's got a spare machine to part with.

And just so you know, most machines will run well for thousands of hours. (Like boat engines, it's the amount of hours they've been used that gives you an idea of just how "used" they are, not the time that's passed.)

HTH

Ok, so I know you said that if I showed signs of Central Sleep Apnea, that it would have shown on my sleep study, but I think basically what the doctor was describing was that if the pressure was incorrect on the machine that it could somehow CAUSE a Central Sleep Apnea episode? Is that something you or anyone you know of has ever heard of?

At this point, I don't have a few hundred dollars laying around to pay for a CPAP machine, so in reality all I'm looking for are tips and tricks on how I might be able to ease some of my OSA symptoms. So far, not sleeping on my back and trying to sleep upright are all I have and am definitely going to try tonight.

I'm starting to experience chest pains and headaches and I'm not sure if it's because of the lack of sleep I'm getting, the stress I'm feeling because of dealing with these jerks at the VA or a mixture of the two.

Hi Marissa, I just posted to your other thread. I think there's some confusion and a lot of discussion about central apnea and ASV -- and it may not be relevant to your situation at all.

A central apnea is when you stop breathing but your airway is not obstructed. A few central apnea events are no big deal and are normal -- lots of people have a few from time to time. I have a few every night but I do not have a diagnosis of Central Apnea. You would know from your diagnostic sleep study if you had Central Apnea.

Assuming your diagnostic study showed only obstructive sleep apnea (OSA) then what the doc is concerned about is the possibility that you might start having central apneas (more than just a few) in response to the pressure of the CPAP -- this is called Complex Sleep Apnea (CompSA). It doesn't happen frequently but I assume your doc is just exercising an abundance of caution because of the TBI. Some cases of CompSA are handled well with a bilevel (BiPAP) machine, and some need to go all the way to ASV.

So if I'm understanding your posts correctly, you have OSA and will have a titration study to determine the pressure you need and to make sure you respond favorably and without complications to the pressurized air.

I am sorry about the ridiculously long wait times. Do you have a comfortable recliner to sleep in?

You are welcome to post a copy of your diagnostic sleep study (white out personal info) for more feedback -- for example, did any centrals pop up and is there evidence that your sleeping position worsens or improves your OSA, etc.

kaiasgram wrote:Hi Marissa, I just posted to your other thread. I think there's some confusion and a lot of discussion about central apnea and ASV -- and it may not be relevant to your situation at all.

A central apnea is when you stop breathing but your airway is not obstructed. A few central apnea events are no big deal and are normal -- lots of people have a few from time to time. I have a few every night but I do not have a diagnosis of Central Apnea. You would know from your diagnostic sleep study if you had Central Apnea.

Assuming your diagnostic study showed only obstructive sleep apnea (OSA) then what the doc is concerned about is the possibility that you might start having central apneas (more than just a few) in response to the pressure of the CPAP -- this is called Complex Sleep Apnea (CompSA). It doesn't happen frequently but I assume your doc is just exercising an abundance of caution because of the TBI. Some cases of CompSA are handled well with a bilevel (BiPAP) machine, and some need to go all the way to ASV.

So if I'm understanding your posts correctly, you have OSA and will have a titration study to determine the pressure you need and to make sure you respond favorably and without complications to the pressurized air.

I am sorry about the ridiculously long wait times. Do you have a comfortable recliner to sleep in?

You are welcome to post a copy of your diagnostic sleep study (white out personal info) for more feedback -- for example, did any centrals pop up and is there evidence that your sleeping position worsens or improves your OSA, etc.

Ok, so I already responded in the other thread, but this one seems more detailed, so here goes. Thank you for explaining the difference, it's more than the d-bag doctor did for me yesterday…. but then again, what did I expect from the VA? I think what you are describing about her being worried about CompSA is exactly what she is worried about.

I do not own a recliner, I'm sleeping on the chaise part of our couch propped up at a 45 degree angle. My question is, which is worse for my brain, guaranteeing that I am going to deprive it of oxygen for up to an average of 25 minutes an hour…. or chancing POSSIBLY having CompSA from using an Auto CPAP machine that records all the information on how high the pressure went, how many times the seal was broken and all that….?

I think you've answered your own question in the last 1-2 lines... it's just difficult to tell someone outright to go against doctors' advice under the circumstances, but... hypothetically, if you were to acquire (done every day and we can help with it) your own auto machine and well fitted mask, then come back here and let us help you get it set up properly, right through finding the right pressure settings, and did it all very conservatively and cautiously... how would you feel about that?

Sleepless1 wrote:My question is, which is worse for my brain, guaranteeing that I am going to deprive it of oxygen for up to an average of 25 minutes an hour…. or chancing POSSIBLY having CompSA from using an Auto CPAP machine that records all the information on how high the pressure went, how many times the seal was broken and all that….?

Marissa that's my question too. It seems like immediate action for the apneas that are already happening would be the highest priority, rather than waiting in the hopes of being able to prevent some possible apneas that may not even show up.

That said, I don't know enough about TBI, and certainly not the specific nature of your TBI, to say the doc is right or wrong. I'm just sorry you're having to deal with a system that moves at a snail's pace.