Terrible memory problems, can't concentrate

Have your pulmonary doctor and the one that diagnosed your cyst talked at all? I'm thinking that it would be a good idea.

I realize you're having problems with the mask. Maybe you need to try another one, or several. It's really important you sleep with your mask on every single night, with the correct pressure. Talk with your pulmonary doctor again, and then set your machine as is suggested by him or her. If you aren't comfortable with your pulmonary doctor for any reason, change doctors. I'm sure there are several where you live.

I know this isn't easy to deal with and, in fact, is a real pain. However, you have to make the decision to be compliant and learn how to keep the mask on. Ask your doctor if you could try the nose pillow mask... see the one I use below.

Using your mask one or two nights here and there, or taking it off during the night, isn't going to help you even a little. You have to give it several months or even longer to see some results. I'm just starting to see real results just about every day now. They are subtle, but they are there. I'm not as tired during the day, feel much more motivated, and my level of concentration is better than its been for a long time. But, you have to keep the mask on, every night, or you aren't going to see the results you are looking for.

yeah you know over 50% of people don't adjust to cpap after a year or something
I've tried nasal mask but it's kind of uncomfortable and I feel the cold air and think I am underwater drowning- are the nasal pillows better than full face?
so is my 18/14 pressure too high? this is from a year ago but I was getting 97% O2 up from 75% on this
I'm still tired and sluggish thinking not remembering where I am

what should I set the Ti to?
I notice sometimes the patient triggered breaths is at 53% sometimes it's at 97%- is there a reason why?

sickwithapnea17 wrote:what should I set the Ti to?

That's a question for the RT at the DME. The Ti needs to be tailored to your particular breathing style.

I notice sometimes the patient triggered breaths is at 53% sometimes it's at 97%- is there a reason why?

Sometimes you breathe better on your own; that shows up in the higher patient triggered breaths. The percent of patient triggered breaths is the percentage of inhalations you did without any nudging/assistance from the machine.

Guess what, we are all tired of sleep apnea. First we were tired from it and now we are simply tired of it. But, we kept at it, got lucky enough to have access to a site like this that allows the multitude of suffers to communicate with each other, and now are no longer tired "from" sleep apnea.

Get a grip! First thing I would advise you to do is "READ". You appear to have a habit of asking question after question, starting thread after thread, and some of the times, the questions you post have been asked before. But you don't seem to be reading or reviewing the prior material. There are a lot of good answers on the site, but first you need to read them.

Life tip: Do the best you can with what you have to do with! If you can find something better, then add it to the what you have to do with pile and move on. Consistently work on the problem, eventually you will solve it, for all positive movement is progressions toward the healthy.

I change the settings because the high pressure wakes me up- maybe it takes time to get used to? anyway it seems you need the high pressure to knock out the central apneas
you know I've tried talking to my pulmonolgist about this and I had 3 sleep studies but I still have problems with ca even though I don't think I have brain damage- I just have this cyst that is growing slowly in my clivus

OK.. Going to give this a try. From one person with Central Sleep Apnea who is on a Bipap to another. Do what many others have said. Stop messing around with your Machine settings. CSA or CA does not mean you have brain damage. There are many causes of it, a lot of which are unknown. However as I saw from my Sleep Studies and you probbly might if you looked at yours, diffrent pressures can cause MORE Central Apnea Events. For me certian pressures can increase the number of events weel above what I would see without my machine.

From the sounds of it, your treatment of your Sleep Apnea is not effective. heck by messing around with your equipment you could easily be better off not sleeping you machine, if you have incresed the number of events. If you want to get through this, you are going to have to set the machine back to what was prescribed from your last titration. And then go talk to the sleep Dr in detail. If your sleep Dr changes your machine settings, ok. But you need to stop doing it. If you just can't get the rest you need, maybe it's time for that 4th sleep study..

And if you can't seem to keep the mask on. Then fix that delemia first, because your machine is not going to do any good with the mask off. And if you can't sleep with a high pressure, but thats what needs to treat your condition... Then setting the pressure lower than needed so you don't take the mask off won't do any good for you either.. You need to "As many have said" buckle down.. Figure out a way to use the machine at the pressure prescribed.. with the mask on all night.. And then work forwards from there.


Until you take control of this, you will continue to get the same results as you are having now.

sickwithapnea17 wrote:I just wish I could have been cured on CPAP like everyone else

I think this is what got a few people worked up. For one many people struggle with CPAP the entire time, some notice no real benefits they can feel and stick with it anyway. Those are the true heroes of CPAP. For others it does work, myself included but it was never "cured", I just noticed I felt better with the machine than without so decided I was going to make it work, no compromise. It was tough at first but is getting easier and easier. It's not perfect but I will continue to work on it. I still never manage to stay in REM but someday I will.

I think that comment it silly considering the forum you posted it on. This forum is full of people struggling to get effective therapy. What Janis said I agree with. The only sure fired way to have CPAP fail is not to use it. If you are not interested in keeping your mask on whats the point asking about other problems? No mask, no treatment. First order of business is to find a mask you can sleep with all night with leaks under control. If you can't do that you need to work on that first in my opinion. That includes keeping your mask on, something I still struggle with from time to time.

Mentioning how bad you feel when you don't wear your mask is one thing, I mention it all the time but I see it as a positive. It reminds me how much I need my machine. Complaining therapy doesn't work when you take your mask off is, well, silly. Of course it doesn't. Anti-biotics will not cure an infection if you never take them either. That's just common sense.

I just don't understand why I have this disease when I was exercising and eating normally and didn't have any health problems before except asthma which wasn't my fault.
anyway it is destroying my career- but a lot of people just seem to think that's funny and want attack me here for no reason

sickwithapnea17 wrote:I just don't understand why I have this FREAKING disease when I was exercising and eating normally and didn't have any health problems before except asthma which wasn't my fault.

Life's not fair, is it?

sickwithapnea17 wrote:I just don't understand why I have this FREAKING disease when I was exercising and eating normally and didn't have any health problems before except asthma which wasn't my fault.
anyway it is DESTROYING my career- but a lot of people just seem to think that's funny and want attack me here for no reason
I really don't see how that is funny

If it makes you feel better blame your genes.
Be happy that if you actually manage to focus on wearing it 8.5 hours EVERY NIGHT you can get it under control without any side effects, unlike other genenically caused diseases which need massive amounts of medications with side effects.
Apnea is easily managed with a simple therapy.

Well it did destroy my career. I went from making 400K+ a year to making nothing. I went from being a loving father to the "sick dad who does not do anything". I went from being the husband that loved getaways with his wife to one that never wanted to do anything. I went from loving life to contemplating suicide. OSA destroyed my life, not just my career...my life.

When I found out I had sleep apnea I was excited, I was hopeful! I finally knew why I felt so bad my whole life and why in the last few years I felt like I was dying (because I was). I was told it may be a long road to recovery and not an easy one and not a complete one but at least I had a road to travel down.

So now I have to rebuild my life. I have to rebuild my relationships with my friends, my wife, my community and my children. I have to rebuild my career, even my memories of the past have to be reconstructed. I have to relearn life from the ground up.

I would be upset if it was something someone else did to me or something I knew about and chose to do nothing about however neither of these things is true. I really do not care how or why I have sleep apnea, I just know I have it and if I treat it to the best of my abilities I will increase my quality of life.

I eat right, exercise and had a very in demand career that was fulfilling and rewarding and paid a TON and lost it all anyway. The fact I feel better on CPAP is all I need to know, thats my mission, to make this work. If I have to rebuild my life then that's what I have to do.

I could have easily have had a heart attack and died instantly (where I was headed, sleep apnea had my resting heart rate at 36!!!). I could have had cancer like many of my family or died in a car accident. I could have diabetes or asthma. How can you realize asthma is not your fault but wonder why you have OSA? Same reason, it just IS.

No one thinks its funny here my friend, we more than anyone understand the suffering you are going through. You are getting grief because all of us already went through the coping process and we can tell you are still in denial. You need to step back and work the problem. We are here to help but sometimes that means a kick in the pants.

We all vent about the problems we encounter trying to get effective therapy but we tone down the complaining on how bad life is when its not working if we choose not to try. I started out feeling great and then gave up on CPAP, I never bothered coming here to complain about how bad I felt, I made a choice and I paid a price. I came back here when I had my positive attitude back and was willing to take any and all advice and work the problem.

If you believe in god blame him/her (or think he/she has some divine reason for it), otherwise if you are like me (atheist) you just scientifically reason there is no one to really blame for it. It just is. You also have to realize that its wasted effort looking for someone or some reason to blame it on. Spend the energy working the problem. I know...I went through what you did and gave up. I learned a valuable lesson, the only way to ensure I never get any better is to give up.

Great posts, Cuda!

I hope the OP gets something out of it.

sickwithapnea17 wrote:I just don't understand why I have this FREAKING disease when I was exercising and eating normally and didn't have any health problems before except asthma which wasn't my fault.

And just why do you seem to think the OSA/CSA is your fault? Chances are the OSA is caused by physical, structural problems with how your upper airway is put together. In other words, it grew that way. So the OSA (and the CSA) are no more your "fault" than the asthma is.

And you've got the OSA for the same reason you've got the asthma: Bad luck or bad genes or both.

anyway it is DESTROYING my career- but a lot of people just seem to think that's funny and want attack me here for no reason
I really don't see how that is funny

In the grand scheme of things, your overall suffering from OSA is greater than some and less than others. It is what it is.

You are NOT the first person to have struggled with this disease and its consequences: Read and re-read and re-read (again) Cuda's excellent post.

You are NOT the first person to have struggled mightily with effort to become compliant with PAP therapy: Read and re-read and re-read many of the the reads posted by Madalot or SleepingUgly or myself among many others. The major difference between our suffering and yours? We've made the commitment to make this therapy work as well as possible for us.

In the words of Yoda: Do, or do not. There is no try. You can't just "try" to be compliant: You either make the hard decision to force yourself to put the mask on EVERY single time you want to go to sleep and EVERY single time you wake up without the mask on because you took it off in your sleep. Or not. The choice is up to you.

But you continue to believe that you are "trying" to make BiPAP work, when in reality you are choosing to leave your apnea untreated or, more precisely, severely under treated due lack of your compliance. And long term, your untreated/under treated OSA/CSA will progressively make you feel even more miserable and more exhausted and more sleepy and more cognitively "not there" than you do now.

And until you decide that you will actively work on forcing yourself to put the mask on EVERY single time you want to go to sleep and EVERY single time you wake up without the mask on because you took it off in your sleep, you will not succeed in getting over the compliance hump. And until you get over the compliance hump, there's no way that CPAP can even stabilize the situation: In other words, the first (and sometimes only) thing consistently using the BiPAP as directed by your doctors does is that it prevents the OSA/CSA from progressively making you feel even more miserable and more exhausted and more sleepy and more cognitively "not there" than you do now.

You've been given excellent advice in both this thread and many others. In a nutshell:

• Quit playing around with the settings all the time. You've got to give a given setting at least a week or two before your body has a chance to adjust to it.
• Try to work with your doctors. Yes, many of us deal with uncaring, unsympathetic, or just plain stupid docs. But finding a doc you trust needs to be a priority. And in the meantime, you have to work with what you have. Call the doc's office and ask for a call back when you know you're having problems. If the AHI is consistently running above 5, call the doc's office and tell the receptionist that you need to see the doc because treatment is not yet effective.
• Commit to becoming compliant. Until you are using the machine EVERY night and ALL night long, there is no way that therapy can work for you. If you are not willing to do the work, your health will continue to deteriorate. If you are willing to do the work, eventually the hard work pay off. How long will it take? Maybe months Maybe a year or more. Maybe you'll never start to feel significantly better. But even then, therapy will pay off in the sense that your health will not continue to deteriorate due to the beating your body takes from the apnea every single time you choose to sleep without the mask.

Great posts Robysue and Cuda!! Wow... I couldn't have said it better.

I hope the OP realizes that we are not mocking him or disregarding him, but we have given him/her our advice and they just seem to not to want or accept it. Forgive us for being a bit cynical.

- John

I just popped into this thread and have seen a ton of helpful posts.

We all have our problems and issues. My situation is pretty bad and while this may sound horrible, I don't mean it that way. If sleep apnea was my only problem, I would be thrilled. Sleep apnea (both obstructive and central), diaphragm paralysis, unknown neuromuscular disease -- it's a lot to cope with and it has ruined my life in a similar fashion to what Cuda described - thanks for sharing that.

We all get angry and want to blame somebody, but that's not productive. When I start to feel that way, I stop and consider that no matter how bad it is, there are people out there worse off than I am and I should be grateful I am not in THEIR shoes (I'm sure a few people here are glad they aren't in mine!).

Trying to blame somebody wastes precious energy. Keep reading, learning and keep trying. Focus all that energy on doing something about it.

I've been at this 2 years and am still working on it. And yes, I get upset, down and depressed. But I try NOT to waste too much energy being that way. I need to keep working to make it better.