Please Help, CPAP Making Symptoms Worse

[Wulfman]

EPR is set at 2, I set it there since 2 is the lowest pressure drop that I can stand.

Then, if your minimum pressure is set at "6", your "effective" pressure on exhale is "4". For many people, apneas occur at exhale.
If your numbers are still too high or you're feeling like crap, that would be the reason......in my opinion.


Den

[Julie]

Sarcoidosis is a rare condition, and most often hits people 20 yrs older. I wouldn't go off half cocked thinking you have it or anything else without first seeing a doctor! There are thousands of diseases and conditions out there, the majority of which probably have lots of overlapping symptoms and it's irresponsible to tell someone they likely have a disease like that without anything real to go on but rather vague descriptions of a couple of symptoms.

[scrapper]

Tons of information included that may or may not be relevant..........

But honestly, it takes 7-10 days for your body to consistently respond. All of these changes, done so quickly, are not providing you with any valuable information.

Your range is too wide--3-5 numbers apart is adequate for a range--and I would suggest 6-10 or something along those lines that includes your titration of 7. Doctors like to start out with the wide ranges to allow your apap to do it's job and auto-titrate.

I second what others have said..........by bumping up your therapy beyond the titration level, you may be creating further problems with central apneas.

Find a physician you can trust, develop a relationship, allow him or her to sort out the various symptoms and put them together....and be your own advocate. You've got way too much going on for just us armchair physicians to appropriately treat.

Here's to hoping you feel better soon--but remember, you didn't get into this overnight, and you're not likely to get out of it overnight either..........

[mcs699]

Ok, so my new doctor wants me to do 9-20 for three weeks and then a check up with the data. I know these settings are just going to make me feel like shit because I've done close to this range before for quite a while. I guess I'll just have to try to bear it.

As far as the body taking a week or longer to adjust, if anything wouldn't you at least see a change is the AHI for new settings? It just doesn't make sense to me that changing pressures would have no effect on the AHI, HI, etc for a couple nights and then slowly change after a week.

Anyways, thanks for all the helpful input.

[DreamOn]

Sarcoidosis is a rare condition, and most often hits people 20 yrs older. I wouldn't go off half cocked thinking you have it or anything else without first seeing a doctor! There are thousands of diseases and conditions out there, the majority of which probably have lots of overlapping symptoms and it's irresponsible to tell someone they likely have a disease like that without anything real to go on but rather vague descriptions of a couple of symptoms.

Hi Julie,

I assume that your comment was partly directed at me. You are absolutely right. I didn't mean to imply that he HAS sarcoidosis, or that it's even likely. Clearly, I am not a doctor. I only brought that up as something to look into with his physician, because of his reported symptoms. He is in the age group for that disorder. From the website cited earlier: "Once thought rare, sarcoidosis is now known to be common and affects people worldwide. The disease can affect people of any age, race and gender. However, it is most common among adults between the ages of 20 and 40 and in certain ethnic groups." Ethnic groups most at risk are people of African-American, Scandinavian, German, Irish or Puerto Rican descent. So I thought it worth mentioning, especially if he is in a higher risk group. But, as you said, his symptoms could be due to any number of causes.

It's the "chest discomfort and pain" that raised concern with me. He said he's been thoroughly tested by a cardiologist and no problems were found with his heart. I'm not sure why his symptoms would be worse when he's using CPAP (in his words "chest discomfort was worse, the pains were worse, I was having more eye floaters, and more of the weird palpitations).

Floaters (especially "a large number" of them) don't usually develop in someone so young. They can be found with sarcoidosis, diabetes, and other disorders as well. So I think he should have things checked out. That's all. Some of the problems may be caused by anxiety, stress and/or sleep apnea too. Sorry if I caused any undue alarm. My bad.

~ DreamOn

[mcs699]

No alarm here. I have been dealing through this for a long time and have definitely been through the gauntlet of emotions. After so long I don't really think anything would cause me to be overly alarmed , upset, or worried.

Speaking of the floaters, that is definitely the most odd and troublesome of my symptoms. On the worst days I just want to sit in a dark room all day because these squiggly lines and spots are driving me crazy. And from all my searching the only causes that I could find of such a symptom are a retina tear (which was ruled out), or old age (which I don't have). So all I could think of was maybe the oxygen level drops at night were somehow causing the floaters.

[DreamOn]

No alarm here. I have been dealing through this for a long time and have definitely been through the gauntlet of emotions. After so long I don't really think anything would cause me to be overly alarmed , upset, or worried.

Speaking of the floaters, that is definitely the most odd and troublesome of my symptoms. On the worst days I just want to sit in a dark room all day because these squiggly lines and spots are driving me crazy. And from all my searching the only causes that I could find of such a symptom are a retina tear (which was ruled out), or old age (which I don't have). So all I could think of was maybe the oxygen level drops at night were somehow causing the floaters.

mcs699,

I'm glad to hear that I didn't worry you. Perhaps I should not have mentioned specific medical conditions. But I know how it is with doctors. They don't always get the entire picture, and there isn't usually a lot of time to devote to an individual patient. We know our bodies best. Sometimes it helps to know what conditions to rule out when searching for explanations for our symptoms. In my case, if I hadn't mentioned sleep apnea specifically to my doctor I wouldn't have been diagnosed with it. And, looking back, I've had the symptoms for at least 15 years -- maybe much longer. Imagine all the damage that was done in that amount of time! You are very fortunate to have discovered it early.

I assume that your eyes have been thoroughly examined by an ophthalmologist (not an optometrist), to make sure there isn't anything more serious there. If you haven't, you should, especially since the floaters have increased. While it isn't unheard of to have floaters at a young age, especially if you're nearsighted, because you mentioned that you have a large number of them it made me wonder if there may be an underlying medical condition causing them. Sarcoidosis and diabetes are two that came to mind. I'm not aware that they're associated with sleep apnea.

Anyway, I hope you feel better very soon. Try to be patient with adjusting to CPAP. It isn't always a quick fix, and it can take time to get things adjusted properly. Give your body some time to adjust to any changes made, and you'll eventually find what works best for you.

~ DreamOn

[scrapper]

Ok, so my new doctor wants me to do 9-20 for three weeks and then a check up with the data. I know these settings are just going to make me feel like shit

With this attitude, it will probably be a self fulfilling prophesy.........you will feel like shit.

Attitude is everything.

So why are you going to this doctor at all then? Obviously you haven't been successful on your own......

As far as the body taking a week or longer to adjust, if anything wouldn't you at least see a change is the AHI for new settings? It just doesn't make sense to me

This may not make sense to you.........but it is reality. It's not just my perception or reality--I generally see about "a week to see results" quoted on this board, but personally find that about 10-14 days to see consistent results is closer. You don't want to make changes based on a single night or a couple nights, but trends and averages. Individual nights are good or bad for any number of variables.

Change your attitude, learn lots here....learn lots from your physician, and combine the two to ask more questions and find answers. But, attitude is everything.

[Julie]

Floaters go away in time, maybe a couple of months, so I wouldn't worry too much about them unless you've had them a lot longer. And I don't know if anyone else has mentioned this, but a fair number of people get muscular chest discomfort (even if quite internal) when starting Cpap as they're muscles aren't used to being stretched. I think it's quite possible that's all that's going on with you, so unless you get them completely independently of Cpap (just waking up) I wouldn't necessarily think of horrible alternatives.

[TenmaNeko]

I used to have a bunch of floaters also, when I was back in college. I had one of the school nurses mention that she tended to get them around the time when her glasses prescription was due to be changed. When I actually got fitted for glasses, they went away. The eye Dr. said not to worry about them unless they didn't go away or got really really bad.

So $80 for the Dr. visit and $30 for glasses and I was good to go.

[rjjayrt]

seems to me that maybe you should go back to your original settings and let us know the numbers after about at week or so. Just because apap and epr are available it doesn't mean you must use it. I'd put my pressure at 7cm with no epr and use my ramp if necessary and go from there. At least we know those numbers corrected the problem during your sleep study. After a week lets look at your AHI and your leak numbers. I'm thinking with all the tinkering you've done by raiseing your pressures maybe you've brought some centrals into the equation. As others have said if your having chest pains which are abnormal for you then of coarse you should speak with your physician. Like I said, start over and lets go from there.

[rjjayrt]

I don't believe Dreamon suggested that he had sarcoid at all, he just noted and accurately I might add that his symtomology closely matched that of sarcoid. I might also add that sarcoid is not all that rare. Do I believe he ahs sarcoid, nope, but should it be considered, sure. Please be careful when you attack others as irresponsible since many of your opinions could be considered that as well, as could all of our opinions.

[Sergey45]

I am sleeping with CPAP machine for more than 4 years now. Remember that CPAP equipment needs to be adjusted to it.
In a reference website you can take a look at machines I been using and also all CPAP masked I’ve tried.
Good Luck!
http://www.sleepapneasymptom.medgrip.com

[mcs699]

Floaters go away in time, maybe a couple of months, so I wouldn't worry too much about them unless you've had them a lot longer. And I don't know if anyone else has mentioned this, but a fair number of people get muscular chest discomfort (even if quite internal) when starting Cpap as they're muscles aren't used to being stretched. I think it's quite possible that's all that's going on with you, so unless you get them completely independently of Cpap (just waking up) I wouldn't necessarily think of horrible alternatives.

I've had the floaters for probably about half a year before I started CPAP and the chest discomfort/pain for a lot longer. These symptoms were the main reasons I asked my doctor about sleep apnea, eventually leading to the CPAP therapy.

[mcs699]

I used to have a bunch of floaters also, when I was back in college. I had one of the school nurses mention that she tended to get them around the time when her glasses prescription was due to be changed. When I actually got fitted for glasses, they went away. The eye Dr. said not to worry about them unless they didn't go away or got really really bad.

So $80 for the Dr. visit and $30 for glasses and I was good to go.

How many floaters were you getting? I have enough of them to where they often cloud my vision when on the computer or reading in light. And when I go outside during the day I can see them moving all over the place.

Also, where did you get glasses for $30? New glasses and contacts for me usually add up to around $200-$300 (I'm in college right now so I'm pretty broke).