extremely tired all the time. need advice.

If you don't want to use cpap, there are surgeries that may or may not help. After had the surgery, I managed to keep from using a cpap for almost 20 years. I'll be truthful with you, it was painful. At the time, I thought it was worth it. The cpap machines then were much larger than they are today and my job required a lot of travel by air. It would not have been practical to carry one of the machines on an airplane. I was already carrying a nebulizer to treat my asthma. Some people have been helped by using dental appliances. There are options available. Their effectiveness are questionable, but you are free to try them if you want. Do a google search on dental appliances for sleep apnea and UPPP surgery.

Problem is the dental appliance won't work either because of my TMJ. My jaw moves out of alignment when I cant lock my jaw together. I've trained myself to clench my jaw all the time.

I guess the only option for me might be surgery. I'll have to discuss it with my doctor. I made an appointment with my old doc again in about 1.5 months from now.

dorlow wrote:I figured it was sleep apnea help for the most part.

yeah, that's why it's called "CPAPtalk" not oh.. "APNEAhelp" or "APNEAsupport" or "anything but cpap help".

you'll be best served elsewhere.

dorlow wrote:I guess the only option for me might be surgery. I'll have to discuss it with my doctor. I made an appointment with my old doc again in about 1.5 months from now.

Hi dorlaw ~~~ I am so sorry that you'll be continuing to suffer for the next 1.5 months. I sure hope there is no noticeable worsening of your symptoms. Maybe it is possible to be on stand-by somehow to get in sooner?

I can understand not wanting to commit for life to cpap. I've made some surgical choices myself that others thought were extreme in the name of GETTING BACK TO WHERE I NEED TO BE!! Well, maybe I never named it until just now? But *my* goal is to reclaim my life.

I am willing to do extreme things.
Who knows if the decisions are right?

One easy thing you could do though for purely scientific reasons that may be useful to your doctors and to yourself as you move forward in your diagnosis would be to use this 1.5 months wisely?

You could start with your posts here and add detailed and private information about exactly how you are feeling on 7/7/16.

Then you could use the cpap NOT FOR A LIFETIME ... but just for 1.5 months.
And you could chart any changes or chart honestly that there were no change at all and add that data to the 7/7/2016 data.

Then you will know in your heart that you have done the best job possible and have the best information for assessing the risks of surgery.

1.5 months of discomfort is nothing especially as you are already so extremely tired and you are reaching out for help to anyone who will listen. I believe you that you are nearing the end of what you can tolerate. How can you keep up anything when you are so exhausted? This is serious stuff. Worthy of serious effort.


There are plenty of practical things you can learn and some mind games too that could make the 1.5 month easier. And it's all within your control. Maybe you and your wife should alternate nights? She might get some benefit from the extra oxygen as well. And maybe her practice and insight could even help you with those aforementioned "mind games"?

Either way I wish you well and hope you feel better soon.
Being tired all the time SUCKS!

Good Luck.

I get what you're saying. Keep a log how I feel today and use my cpap and keep a log for the next 1.5 months. I just can't see how the CPAP is going to make me feel any better in the next 1.5 months when I wore it for a year (with a very high compliance according to my doctor) and felt 0% difference. What would 1.5 months help at all?

And no insult to anyone here by what I am about to say but trying the CPAP again when it didn't work for the last year...

The definition of insanity is trying the same thing twice and expecting different results. I've tried it for a year. Why would me trying it again would I ever expect a different results.

I can't change any settings on it. I can change ramping time and humidity. That's about it. I don't use any ramping time because I feel like I suffocating if I can't get air. But I had those set right for me. The pressure is set by my doc. I can't change that.

You're not listening - we can help you with the settings, we can advise how to optimize Cpap for you - it obviously wasn't done previously, as happens way more than you might realize - but you have to stop saying why try now because of that. Start over, with our help now, and give yourself and your body a chance. We can't change the past for you but you don't have to let it decide your future.

WHY can't you change the pressure your doctor set? Are you afraid of the Cpap police finding out? It's your body, your treatment and like diabetic children who learn to do their own blood sugars, etc., you have every right to take control. If you use software (e.g. Sleepyhead) with your machine (of course it has to be a machine that will work with it) you'll be able to see for yourself, with our help, what's going on overnight and why something needs tweaking. We've all been changing our pressures for years and if we'd just gone along with what the DME's and/or doctors said at the start, would not be doing well in our lives. Doctors think that if an Apap is set to default highs and lows of 4 and 20 the machine will automatically respond to all apneas, but that's not the case... apart from the fact that 4 (or 5) is too low for most to not feel air starved at, it's also too low for the machine to do its job if apneas occur at much higher pressures - it takes too long to get there from 4, so we experiment by raising that by 1-2 cms for a few nights at a time until we feel better and until Sleepyhead says it's a good level to stay with.

And most of us stopped using the ramp within a week of using Cpap... you're not fully treated until it reaches the minimum pressure setting... which might be ok if that setting were e.g. 15, something a bit hard for some people to adjust to in one go, but using the ramp if your low pressure setting is so low to begin with completely defeats the purpose of treatment.

Stop being afraid of your doctor (to whom you are a paying customer who can 'fire' him/her at any time) and let us help you take charge of your life.

dorlow wrote:And no insult to anyone here by what I am about to say but trying the CPAP again when it didn't work for the last year...

The definition of insanity is trying the same thing twice and expecting different results. I've tried it for a year. Why would me trying it again would I ever expect a different results.

I can't change any settings on it. I can change ramping time and humidity. That's about it. I don't use any ramping time because I feel like I suffocating if I can't get air. But I had those set right for me. The pressure is set by my doc. I can't change that.

With the help of this group, you can learn how to evaluated the sleepyhead data and properly set your pressure. You do not have to go to the doctor to do that. The question is do you want to?

I understand your feelings of frustration in feeling like you tried something for a year to no avail. But if the settings weren't optimal and can be changed as folks are trying to tell you, then that year trial was pretty inaccurate.

But if you still want to move on from cpap, then you need to decide what the best option for treating your sleep apnea whether that be a dental device or surgery as going without treatment is not a good choice.

49er

dorlow wrote:I get what you're saying. Keep a log how I feel today and use my cpap and keep a log for the next 1.5 months. I just can't see how the CPAP is going to make me feel any better in the next 1.5 months when I wore it for a year (with a very high compliance according to my doctor) and felt 0% difference. What would 1.5 months help at all?

The difference would be that we would help you use better settings. A lot of doctors set the machine wide open and don't actually care if you get good results. They just look at compliance hours.

Let's say that you actually need a pressure range of 10-15. but the machine is set at 4-20. This means that it will start off at 4 and stay at 4 until you snore or have a flow limiation. Then, it will slowly increase, stop, check for flow limitations, increase, stop,, check again, and so on until the problem stops. That means that you continue to have events until it gets to where it needs to be. After it finally gets there and the problems start, it will go back down until a new flow limitation sets it off again. In the meantime, your slepe is being disturbed, and your oxygen is going down.

In addition, many people have trouble sleeping through wild changes in pressure. Some people need a narrow range or a fixed pressure. By using the data, we can determine what is ideal for you and help you start feeling better.

Would you like an easy way to test this theory? Without even using the cpap machine?

Get out your machine, download the software, upload the data from the SD card in the machine, and look at your data. See what your ahi was averaging each night. I bet it is a lot higher than 5 (what doctors prefer). And a lot of people don't feel better until it is below 2. Look at your pressure graphs. Does it start at 4? Does it go up and down a lot?

I bet you will see that you have a lot of events, and your pressure is going up and down a lot. In other words, your doctor sent you home with a machine that was set to fail. You tried, but without help, you were doomed to fail. Imagine how much better it could be if the settings were set for you, and not the most generic possible setting ever.

After you look at the data, pick a typical night and upload the graphs here. We will help you find the right settings.

ok, say I entertained the thought to try it again and then upload my sd card data. where do I get theverything software to read the SD card and modify the settings? although I am still leaning way away from using the cpap for the many other reasons I don't like it.

dorlow wrote:ok, say I entertained the thought to try it again and then upload my sd card data. where do I get theverything software to read the SD card and modify the settings? although I am still leaning way away from using the cpap for the many other reasons I don't like it.

See the link in my signature for downloading sleepyhead software which includes relevant instructions. But if you have questions that aren't answered, post in the forum.

49er

Good for you! Don't give up now that you've found the right help - there are many very knowledgable and experienced people here, so take advantage of them. The software is free of course and you will see how much difference it can make to your sleep. Please don't make any quick decisions re having surgery etc. until you've given good, well managed Cpap a chance... if nothing else, surgery unfortunately does not work for possibly the majority of people trying it and so many end up returning to Cpap within a year, and surgery is not reversible of course. We'll get things going well for you if you give us and yourself the chance.

dorlow

Your frustration really seems so genuine and sincere it's palpable. Please count *me* in your fanclub because you are exactly the type of person who SHOULD be empowered!

...all of this 'compliance' bs surrounding cpap ~~ all of this 'control' and lazy/greedy/ perhaps uneducated? tactics
~~ where so many people are being set up to fail? It's maddening!!

I can't believe you made it a year patiently waiting results. You seriously are my hero.

There is so much you can do to get comfortable masks, better settings, better experiences, better results. But there IS a definite learning curve. It takes some effort. But surgery has serious risks too. None of this is easy. Sheesh ... not much worthwhile in life is easy?

...but all of that pales in comparison to being empowered in your health care. There is no reason for someone else to make appointments months out and give you pablum answers about 'how you are doing'. Doctors and healthcare are so expensive that it is easy for even the strong to be made in to 'sheep'. Or else simply quit in frustration.

Don't let them win.

When you meet with them this time to discuss all available options? Come locked and loaded with extra ammunition up your sleeves and in your socks.

Even in your exhausted state ... everything about you screams that you are precisely *that type of man*.

Good Luck!

...and please don't disappear.
Yours is a story I definitely would like to follow.

I'm just afraid I'm going to go to the doc appointment. he's going to say you can try A, Band C. but A costs a lot more than I have, B costs even more, and C is crazy expensive and none of it is guaranteed and I may throw all the money out the window if whatever choice I choose (and me not being an expert can almost guarantee I'll pick the wrong one the first and second try). so I'll decide I can't afford to fix my apnea and just leave the office believing it wasn't meant to be.