Please Help, CPAP Making Symptoms Worse

Hi, I'm new to the forum and this is my first post here. I know this post is long but I want to be as thorough as possible because I have been suffering for a long time and I'm really hoping for some help. So please just hear me out.

I'm a 23 year old, 6' 3" male about 250lbs and have had the following symptoms for around 5 years that have progressively gotten worse:
Fatigue
Chest discomfort and pain (on the left side, only the past year or so)
Weird heart sensations/palpitations (as if my heart is tired)
Shortness of breath
Concentration problems/Brain fog (major problem being an engineering student)
And lately, (last year or so) I have developed a large number of eye floaters that I assume to be tied to the other symptoms. All of these symptoms tend to develop later and the day and get worse until I sleep.

Now I know these symptoms seem to look like some sort of heart problem but I have been to a couple cardiologists gone through a stress test, holter monitor, x-rays and everything to pretty much rule out a serious heart condition. That is when about 6 months ago I thought it could maybe be sleep apnea. It was almost like an epiphany because it all made so much sense, the apneas were waking me up constantly during the night and consequently not letting my heart and body get enough rest, giving me these symptoms which came later in the day when I ran out of my limited energy. So I had some sleep tests. And it turns out in the one night that I was monitored, (which I actually felt better rested than usual) I had moderate sleep apnea with an AHI of 10, a drop of oxygen levels during the night, and a variation in heart rate from 50 to 150. This variation in heart rate is what I believe is giving me the bulk of my symptoms as they seem to correspond to my heart, and this large change in heart rate throughout the night is wearing out my heart (I believe).

So, in the second sleep study I was given titration and my apnea was eliminated at around 7cm of pressure. I was then prescribed a Resmed II auto-CPAP set to auto titrate from 6cm min to 20cm max with a mirage full face mask since I tend to be a mouth breather. I was so excited at the possibility of all my symptoms being eliminated. I imagined how much weight I could lose from exercise without my shortness of breath and fatigue, and the grades I could get in school without my brain fog and concentration problems. So I was eager to start using it. Then to my despair, after about 2 weeks of use, my symptoms were worse. My chest discomfort was worse, the pains were worse, I was having more eye floaters, and more of the weird palpitations. I figured out how to change the settings on the machine and started playing with them, I increased the pressure up to a min of 13, I changed the EPR settings, and I recently changed the max pressure down to 11 (with a min of 9). The first couple of days on the last settings (9cm-11cm) were the closest I have ever felt to an improvement but then on the third day it was just as bad as ever.

Whenever I am feeling really horrible to where the symptoms are just unbearable, I stop using the machine for a couple days and the symptoms go back to where they've been for years, just bearable. I really don't know where to go next, I am in the process of seeing a new doctor but I have always had problems with doctors. I have never been cured or even satisfied after seeing a doctor (probably because of having these problems for the majority of my life) so I have developed a sort of stubborn, do-it-myself kind of attitude. So if anyone out there has had an experience like mine or has any ideas that could remotely help me, please, PLEASE let me know. Anything is appreciated.

Thanks

OK, I'm not an expert and this is not medical advice. And first off, I urge you to find a doctor you can work with. And to read as much as possible as you can here, starting at the top of the forum.

But for now, a question: Why have you increased your minimum pressure above the 7 cm at which you were titrated? More pressure is not necessarily better ... in fact, it can make things worse by causing a different kind of apnea (centrals). It's really important to understand things thoroughly before fiddling with pressure settings.

If I were in your shoes, I'd get myself back down to a range right around my titrated pressure. Like maybe 6cm min to 9cm max. Or something like that. Again, I'm not an expert and I'm not telling you to do that, I'm just saying that's what I might do. (In fact, that is my range, coincidentally.)

Are you watching to see whether you're leaking therapy air? I believe your machine will show this on the LCD display.

What is the machine showing as your AI, HI, and AHI? This is all on the LCD as well, for one day, a week, etc.

Giving us these numbers will help us tell you what might be going on.

Others will weigh in, I'm sure. Stick with this, it may take some time to figure it out.

Best,
Pam

P.S. With your mild apnea and a low pressure, you should be able to get the sleep apnea controlled pretty easily once you get things tweaked a bit. At least, I think so.

Yeah, I meant to mention that. I initially started at a lower pressure, I think it was 4cm to 20cm or something like that. It didn't work and then I raised the pressure. A lower pressure would make sense if the high pressures are causing centrals, I will try a lower range tonight.

As far as the readings, I am not getting any leak messages (the machine says the fit is "excellent") but I do not know how to see the AHI, AH, etc readings. I know there is a datacard that I can send off to be read but I do not have a reader that can read it. I did send it off to the machine's provider as instructed by my doctor and my doctor reviewed the results but I could not get a hold of him to discuss the results and I never saw the results that they supposedly mailed to me. This is when I decided to try a new doctor.

I'm sure the AHI etc is shown on the LCD, but I don't have that machine so I can't give you specific instructions. Do you have the manual? If not, a search on this board will find the instructions.

When you say "it didn't work," it helps to have those numbers to start to analyze why.

Good that the mask is fitting, that's a start!

Sleep well,

Pam

P.S. Follow up with the doctor to get the full report of the downloaded data. You're entitled to it as a matter of law, so be firm and follow up.

Ok, I found the data.

For the past week which has consisted of 4 days set at 9cm min and 11cm max I have AHI: 9.1 AI: 0.7 and HI: 8.4 and no leak rate.

You have a machine that can let you know if your treatment is not therapeutic, so now that you know how to see your numbers, maybe you'll feel better about things. Your first pressure starting at 4 would give many of us trouble. Then going way over your titrated pressure, it's understandable you had trouble adjusting to that too. A couple things to keep in mind... At this point in the treatment, the unfamiliarity of the air and mask may still be disrupting your sleep. Even those who don't have sleep apnea have bad nights now and then, so don't let a bad night make you assume the treatment isn't working. You'll want to watch your data for a while without making changes and give your body/brain time to decide it is familiar. I know it's frustrating to feel you should be doing better by now, but that's more likely to happen after you settle in and things are consistent for a while.

Can you describe more specifically what it is that's not working? Can't go to sleep or can't stay asleep? Can't go back to sleep after waking? Restless sleep? How many hours a night are you sleeping? Humidifier air too hot? Mask uncomfortable or leaky? Trying to sleep in an unfamiliar postion? If you can pinpoint some things to work on then it wouldn't feel so vague, thus unfixable.

Hope things get better for you soon. Oh, have you had your eyes checked by an eye doctor? If I remember correctly, someone posted links to studies are suggesting an increased incidence of glaucoma in OSA patients. Floaters are a part of aging, but you're young, so I'd want to get checked to be sure.

Let us know how things progress.

What I find to be a bit of a concern is your description of symptoms you've had even before testing, odd chest pain and heartbeats, plus eye floaters. I think you need to get those re-examined and the results explained more clearly to you. If there are no clear answers, have you been told they are due to stress, or in any way psychological? I'm not saying they are, but it's important to have some kind of reasonable answers (though I would not be very worried about the floaters).

I definitely agree with other posters that while most of us learn to adjust our 'regular' Cpap pressures up or down a notch or two at times, we do it carefully and knowledgably, but to so radically change your bipap without experience is not a good idea at all. You need more education on OSA, on Cpap and on what is specifically going on with your body - don't try to find quick or DIY answers for them, it's a bad idea (even if it works in other situations in your life .

You can get an instruction manual here for your machine. Hope this is helpful.

http://www.internetage.ws/cpaphelp/manu ... Manual.pdf.

rosie

So, in the second sleep study I was given titration and my apnea was eliminated at around 7cm of pressure. I was then prescribed a Resmed II auto-CPAP set to auto titrate from 6cm min to 20cm max with a mirage full face mask since I tend to be a mouth breather.

I initially started at a lower pressure, I think it was 4cm to 20cm or something like that. It didn't work and then I raised the pressure. A lower pressure would make sense if the high pressures are causing centrals, I will try a lower range tonight.

You can see you results by holding down the left and right button's for a few seconds. This will open the review menu.

How you managed to cycle through the setup menu and change you settings without seeing you results is truly beyond my imagination.

O.

I know you are getting tired of seeing cardiologists for this, but I'm wondering if it would help for you to go to just one more cardiologist at somewhere like the Cleveland Clinic (or another facility) whose specialty is heart issues. I have friends who've gone to the Cleveland Clinic for heart issues, and they reputedly don't "give up" until they figure out what's wrong! Also, are you actively trying to lose weight? That may help.

Many medications have heart palpitations as side effects. Are you on any meds? If so, you might want to research the possible side effects and/or discuss with a pharmacist.

hth,
All in Knots

allinknots wrote:... I'm wondering if it would help for you to go to just one more cardiologist at somewhere like the Cleveland Clinic (or another facility) whose specialty is heart issues.

+1 on that and on seeing an eye doctor. Please. Learn to make them your partners, they really can be very helpful! And you may well have things going on other than your relatively mild sleep apnea (which is worth treating, of course).

Pam

Ok first of all, thanks for all the replies and help.

I have seen an eye doctor about the floaters, he saw nothing he told me, which I guess meant he ruled out any major eye conditions. And as far as seeing a cardiologist, I will definitely consider that because I strongly believe this is something to do with my heart, but I feel that the sleep apnea is the cause of these heart problems because all of the symptoms seem to directly tie in to how I sleep. If I wake up in the morning feeling rested, I will have less of the eye floaters less chest discomfort and pain and less fatigue. So I'm going to continue to try to find a solution to the mild apnea with the CPAP and if I can't after a few months I will try another cardiologist.

Back on my CPAP machine, last night I set it to 6-8cm of pressure and got around 8 hours of sleep and this morning the results show an average titrated pressure of 8 (the max), AHI:8.4 AI:1.3 HI:7.1. And I wake up feeling even worse than usual.

As far as the person who asked me about my sleeping, I usually never have a problem sleeping. I fall asleep relatively easy and sleep the entire night until I'm woken up in the morning by my girlfriend or dog. As far as the mask, it would make sense that this could be causing me to have bad sleep but I really have no problem with the mask, I almost like the way it feels unless it is some unconscious thing where my body is rejecting it during the night.

mcs699 wrote:Ok first of all, thanks for all the replies and help.

I have seen an eye doctor about the floaters, he saw nothing he told me, which I guess meant he ruled out any major eye conditions. And as far as seeing a cardiologist, I will definitely consider that because I strongly believe this is something to do with my heart, but I feel that the sleep apnea is the cause of these heart problems because all of the symptoms seem to directly tie in to how I sleep. If I wake up in the morning feeling rested, I will have less of the eye floaters less chest discomfort and pain and less fatigue. So I'm going to continue to try to find a solution to the mild apnea with the CPAP and if I can't after a few months I will try another cardiologist.

Back on my CPAP machine, last night I set it to 6-8cm of pressure and got around 8 hours of sleep and this morning the results show an average titrated pressure of 8 (the max), AHI:8.4 AI:1.3 HI:7.1. And I wake up feeling even worse than usual.

As far as the person who asked me about my sleeping, I usually never have a problem sleeping. I fall asleep relatively easy and sleep the entire night until I'm woken up in the morning by my girlfriend or dog. As far as the mask, it would make sense that this could be causing me to have bad sleep but I really have no problem with the mask, I almost like the way it feels unless it is some unconscious thing where my body is rejecting it during the night.

I suspect your pressure is still way too low.
Also, are you using EPR?
If you're using EPR, your "effective" pressure is dropping by that much (EPR setting equals the amount of pressure drop on exhale) and allowing events to occur. You also may not have enough airflow to clear CO2 out of your mask with that low of a pressure.

What are ALL of the settings in your machine?


Den

Welcome to the forum, mcs699!

It would be a good idea to discuss all your symptoms with your physician and insist on further testing. Have you been thoroughly evaluated for sarcoidosis, which is an auto-immune inflammatory disease? All of your symptoms are common with that condition. Here's some information on that: http://www.stopsarcoidosis.org/sarcoido ... efacts.htm. Have you been tested for diabetes? While some of the symptoms you describe are often associated with sleep apnea, I suspect there may be something else going on too.

I suggest you discuss this further with your doctor, and I hope that you'll let us know if anything is found. That information may help someone else here too.

Best wishes to you,

DreamOn

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