As I lay myself down to sleep....

I really am freaked out tonight and don't want to go to sleep. Last night, I had an overnight pulse oximetry test at home while I had my bipap on. Even when I was just laying down, my oxygen level would be 93-94%. When I woke up a couple of times during the night, my oxygen level was 81%, the next time, 85%, etc. I knew something was wrong, but this has scared the crap out of me.

They won't even be downloading the info from the oximeter until Monday. So who knows when I'll get treatment. It is freaky to me that I know that tonight, even though I will play with my pressures, that I have a good chance of being in the 80s again tonight.

What I hate about having sleep apnea, is the delay between treatment and knowing your results. I knew a month before I finally was able to pick up the initial cpap, that I had a high AHI--81...there were a total of 450 apneas and hyponeas in 6 hours on my initial sleep study. I had to go to bed for a month knowing that I would probably stop/have difficulty breathing 450 times that night.

Now it is happening again. I know I will be hypoxic again tonight. Sleep apnea is the only disorder I have seen with such delays in treatment. I try to work with doctors, health care providers, and sometimes I don't know what is best, such as last year, I probably should have had a data compatible machine. Do other people with disorders other than sleep apnea have to deal with these delays and lack of treatment?

Hoping I wake up in the morning to read responses... Lovey

Lovey I feel for you. Every since finding out my issue and waiting for doctors, DME's, insurance... I don't want to sleep anymore either until I cannot stay awake any longer and just fall asleep from sheer exhaustion. I know they say we should have good sleep hygiene but I will wait until I get my machine first in order to do so... It's 1am here and I am not going to bed yet...

It's nearly 1:30 a.m. and I am still awake. I wonder how long I can stay awake for!!! I too will probably succomb to exhaustion at some point tonight, and wake up in the afternoon tomorrow.

I did decide to do something. I called up to my sleep apnea doc who is about 2 hours away in Grand Rapids MI. I was hoping for an answering machine and I got one. I left a message about my oximeter level test, being hypoxic, etc.
I have been trying to get help for over 3 weeks from the sleep doc to no reply, other than his office set me up with a nurse practitioner this coming Tuesday. To see the sleep doc himself, I was told I couldn't get an appt. until January.
If they don't do anything after this message, I am going to find myself a new sleep doc. I will probably have to go to the University of Michigan in Ann Arbor to get decent care, even though it is 4 hours drive. But what else can I do? I have MI Medicaid, so I have to have a provider in Michigan, even though Chicago is only 3 hours away.

Well, back to trying to sleep. Oxygen deprivation and tons of anxiety, here I come... Lovey

I don't know what advice to give you because I am new to this but this has helped me alot until I get my machine... Since my titration I have propped up anything I can find behind my back and sleep on my side. I have balled my pillows up, my comforter.. It has helped me alot but still I don't want to go to sleep. I don't know if yours is positional or not but they told me I have many more events while on my back. So for now I am trying anything and everything that will keep me from rolling onto my back.. Hopefully someone with alot more knowledge than I will be along to help..

lovey wrote:.Oxygen deprivation and tons of anxiety, here I come... Lovey

My heart goes out to you both!
All this is kind of a huge shockwave to handle
Maybe if things are taken one at a time ( the most urgent one seems to me to be the the sleep apnea, since other things can develop as secondary problems beacause of it.)

Welcome to this big, caring, sometimes tired but mostly smiling family of masked worriors!
You will indeed find tons of wise people in this forum, ready to help you out whenever possible.
Don't forget the yellow lightbulb at the top of this forum (Our Collective Wisdom), and (CPAP FAQ) : they hold sooooooo much information and guidelines.

Hang in there, we are soooooo lucky to have been born in a time where solutions are up for grabs!

I find that "Carbonman's" feelings expressed exactly what most of us felt in the beginning:

On my ride yesterday I was pondering my plunge into the CPAP world.
When I first viewed the results of my sleep study, I felt like I had been sentenced to prison, by my body.
I thought, this can't be happening. Denial.
The first few nights w/the mask, I was certain that this was a prison sentence. Anger
As I began to read and learn, I started to realize that I don't have a choice here. This is my life. Acceptance.
As I have begun to feel better, I think, hat OSA is the prison.....where everynight
I am tortured...and sentenced to a miserable life the next day.
Maybe, just maybe, the mask is the parole officer. He/she/it, the mask, approves a good nights rest,
and the next day, I am released to a new, brighter day. Follow the rules, check in everynight and make a good
faith effort to participate....you sleep, and then you are released from the OSA prison.
Maybe, just maybe, it is not a plunge into the CPAP world, rather,it is being released from the OSA prison of despair.
Random, rambling thoughts of a rookie hosehead.

So many people seem to think that 'hope' means you must always be positive, every second of every day.
Is it conceivable that you can accept the inevitability of your diagnosis and still conduct yourself with hope?

Mehmet Oz, the cardiologist/MD that Oprah brings onto her shows, once said:

... "we have to have hope, but hope's not about having a good outcome. Hope's about making sense of it all."


Meanwhile, perhaps those wide-awakened moments can be turened into constructive time spent learning more about OSA....
Here are some abbreviations/terms used that will help you get more aquainted with this new language.
Of course, just like you I browsed a lot in this forum to get imformed, and this thread was a saver for me, since finally I figured out what most of the letters stood for !

viewtopic/t1743 ... d-gal.html

Keep in touch and let us know how things go!

Well, I finally did get to sleep at 3:30 a.m.!! And I did wake up, but to a mess. No calls from my sleep apnea doc despite my "emergency" message about my oxygen levels being in the low 80s. I called my primary doctor's office to try to see if he could contact my sleep apnea doctors office, thinking that doctors have more pull (heck, I'm the patient, why listen to me?). My primary doctor's staff said that they did get the results of the oximeter test. However, my doctor was not in today and that he wouldn't see them until Monday. I asked if I could have the oximeter results faxed to me, and she said that they couldn't be released to me until the doctor reviewed them on Monday. She suggested I call the company that did the testing. I did, and they said they can only release them to a doctor. I called again to the sleep apnea doctor's office and left another message.

This is ridiculus. I have been feeling this bad for 6 weeks, with sleeping 12-16 hours a day. I have been trying to get help for over a month. I had to beg my primary doctor for the overnight pulse oximetry test. And now that it shows that I was right, that something serious is going on, I still can't get help? How much damage is this doing to me in the long term? If a patient was walking around with oxygen in the low 80s during the daytime, they probably would be hospitalized!! Just because it is sleep apnea, it doesn't matter? I think it has to go back to that sleep apnea is mostly caused by obesity, and doctors think it is okay to give obese patients sub-standard care. If I just lost the weight, I wouldn't be in this predicament is what I get from them. Never mind that this recent event is probably caused by my losing around 65 lbs. since June, which messed up my OSA.

Thanks for letting me vent, Lovey

Lovey,

Yes, the waiting can be the worst. It's hard to do what you've always done when you have new knowledge. My wait wasn't nearly as long as some say here. Can't say how much it will help, but elevating the head of your bed with either risers or blocks under the head of the bed may help gravity work in your favor. I just rolled up a comforter and placed it between the mattress and box spring across the top. I first tried using extra pillows but I move around a lot during sleep and seemed to slide into positions that probably made things worse. I too tried to stay off my back. In a prior discussion on here, it was said that tucking the chin can affect the airway, so I gathered up the corner of the bedding up under my chin.
Do those things you can to mediate the apneas until you get your equipment.

I used to have a recliner that's first position was more reclined than I felt I should be if not using my machine (during times of extreme congestion). I ended up getting a more formal style with a straight back that raises the feet but just slightly reclines. I put one of those c-shaped travel neck pillows under my chin. My daughter has at my request observed me sleeping like this several times and says I don't snore or have any apparent breathing irregularities. That works well enough for me that I don't even get in bed if I can't use my machine.

Do those little things that you can to possibly help yourself till you get your equipment. Maybe that will help you relax enough to go to sleep before collapsing. Continue being the squeaky wheel. It may not get you taken care of as quick as you'd like, but may make it sooner than if you just waited.

Kathy

I think you make a good point. You shouldn't be walking around with O2 at 80%.

Would you consider going to an Emergency Room? You might get served that way. It's not the BEST solution, but if no one will return your calls, it might be a possibility.

GOOD LUCK!
Babs

I have thought of going to the ER or immediate care. It might work. I have been trying to work with the "system", because I am already seen as a pain in the ass for actually wanting treatment. Finally, the sleep apnea doctor's office called today. I was in the shower and didn't hear. I called back 5 minutes later, and the medical assistant who called was gone for the day. I talked to the receptionist and told her it was urgent, so she put me to the "other" medical assistant. I got the same voicemail as I have multiple times before, and left a message. It's been 2 hours and no return call. They close in 3 minutes. So my attempts have failed.

It doesn't help that I feel terrible today. I'm supposed to fight for basic care? What is wrong with all these people?

kteague--I have been on cpap/bipap for 2 1/2 years. I thought things were okay on the bipap until I lost the weight in recent months. I have to be my own doctor -- I have been telling everyone there was an oxygen level problem for over a month now even with the bipap on. The oximetry test just confirmed what I have been telling everyone.
thanks everyone.

Wow. This is really bad. I just don't know what to tell you. I hate to tell you to go to the ER, and then be stuck with a big bill, but I don't know if you can hold out until Monday, and I don't know if you're going to get service on Monday.

Is it possible to just go to the doctor's office in person and demand service? Tell them you plan to sit there all day until someone sees you?

I'm so sorry,
B.

Lovey I finally got to sleep at around 4am! But when I awoke this morning I was actually dreaming! You do not get to the dream stage unless you make it to REM sleep which is a big problem of mine.. So for me I have a queen sized comforter that hubby hates having on him because it's too hot. I cover myself with 1/4 of it and reach around and ball the rest of it up towards my back. Then I lean forward and let some of that comforter that's balled up get under me and then I lay back on my side.. Feels nice and tight like a wall behind me and this has helped me the most so far. As was mentioned pillows did not work as they shift around.. Hang in there until Monday!

lovey wrote:Never mind that this recent event is probably caused by my losing around 65 lbs. since June, which messed up my OSA.

Isn't that funny that when trying to make ourselves healthy we wind up in fact causing more issues??? For me this all went downhill after I had my whole thyroid taken out in December of 2007. My thyroid was huge about the size of a small grapefruit. I believe that in part this huge thing was actually holding a small portion of my airway open. Now that I am healing and things are shrinking down in recesses that I never had before.. Well there is nothing to hold up that muscle and here I am.. Sorry your having such issues but congrats on the weight loss!

MichelleFL wrote:Lovey I finally got to sleep at around 4am!

Good evening, my late night buddy!!!! I have quite an enticing bed...I think 9 pillows, 6 comforters/blankets, etc., and I arrange them in various ways, so I am usually comfortable and able to find the most beneficial position. I guess that is one of the benefits of being single. Lately, it worrys me though with having all these problems, and living alone. If I am in deep trouble, there is nobody but myself to help me out. Not a good situation.

I hope we both have a better night. Take care, Lovey

I hope you have a better night as well! I find for right now that the less sleep I have the better I feel.. If I get more sleep I must have more apneas and it takes a toll on my body.. So with just a few hours of sleep before I went to work today, I actually felt great! Hope things work out for you on Monday. And did I hear right?? Your walking around during the day with a O2 of 80????

lovey wrote: .. I have quite an enticing bed...I think 9 pillows, 6 comforters/blankets, etc., and I arrange them in various ways, so I am usually comfortable and able to find the most beneficial position. ......

Lovey,

You don't actually say what position you sleep in. For many people, sleep apnea is less severe and can be treated with less pressure when side sleeping. Have you tried that while you have the oximeter?

Good luck in getting some quick medical attention,