HELP!!! I've stopped using my CPAP, any Resp. Therapst here?

Hi everyone,

I posted here before that since I was on my CPAP therapy, my heart palpitations have gotten far worse, almost constant, especially when I wake up in the morning. The only thing that would make them go away was to aerobically exercise for 45min to 1hr. When I would start exercising, I would feel very short of breath. Then after about 20min, I'd feel great, like an athelete. Heart palps would go away, lungs felt like I could really breathe. Then the next morning, everything is back again.

Well I decided to do an experiment. I didn't use my CPAP for three days. I know this is a no-no, but I wanted to see what happens to my symptoms. Well, the result was no heart palpitations and no shortness of breath (feeling that I couldn't get air into my lungs)! I felt great.

So now I have to decide what to do. I am relying on any experience you guys might have since I do not have a sleep dr. My insurance was terrible, and I had to do this alone with my primary care dr., who knows only a little about OSA.

My sleep study was a home unit, which I kept taking off all nite, things kept falling off, etc. They did see mild OSA, but it was a flawed study at best in my dr's opinion. The insurance would not do an in-house study (since they said the OSA was very mild), but did authorize a titration study (go figure). The night of the titration study, I had no events at all, and they started me at a pressure of 5, and raised it up to 9, based soley on blood oxygen levels since I had no events. My heartrate was normal throughout, and I went into superfast REM, which my dr. said was due to sleep deprivation.

So I don't know what to do now. I am tempted to not use the CPAP until I start feeling tired upon waking again.

Anyone know why I feel worse on the CPAP???

I have the Remstar M-series CPAP with C-flex set to 1. I have a full face mask which fits well (no leak alarms have gone off). I am (was) currently using a pressure of 7.5 since I absolutely couldn't tolerate 9. I had been compliant for 3.5months before deciding to stop a few days.

Napagirl

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, Titration, CPAP

Hi Napagirl,

Did you tell your doctor about the palpatations?

You may have other issues of lungs or heart or who knows. Tell everything you told us to your doctor, either a cardiologist or a plumologist.

The fact that your blood oxygen was low, indicates there probably is a problem.

I wish you the best, get answers.

I have seen cardiologists regarding the minor palpitations I have always gotten. I have had Holter monitor, stress test, echocardiogram, you name it. My lungs have never had an issue before CPAP therapy. I am told my heart is completely normal, even with the ectopic beats. I am a 39 y/o female in pretty good shape.

The reason I seeked help for OSA was that my husband has heard me gasping... so I do know that I have some level of OSA, although the home study said minor. My husband did not hear me doing this everynite.

All these symptoms came on AFTER CPAP. I did a search on this site and saw someone referencing hyperventiliation. I think the person was a sleep clinic worker. I am wondering if this is happening to me, since I find when I put my mask on at night, I am not breathing normally. I am breathing faster and deeper. Then I finally fall asleep.

I don't have the software yet (have paid out of pocket for everything). I have to wait til I can budget for it.

I have told my dr. and he doesn't know what is going on. He actually said to try one night without it to see if better since my OSA is minor. He is not a sleep specialist and I don't think he knows a lot about sleep disorders.

All three mornings after waking up with NO CPAP, my lungs feel normal, clear and I do not have any heart palpitations. Why is this happening??

HELP!!!!

Just wanted to bump this.... I really need some ideas from experienced people or RT's since my dr. and I are going this alone.

Thanks!!

Napagirl

This is something that's too complicated for an internet forum. We can help you use CPAP, but this really sounds like there's something else going on here. If your doctor is going it alone, (s)he needs to refer you to someone who isn't.

this is one of those cases where Home Studies simply don't work. They simply slap equipment on your and walk away.

There is NO tech to see events as they fly by. One such event would be central apnea. A tech in a lab would look at your respiratory channel to see if there was any movement. Those are manually scored in a lab when you have a lab based PSG. Then if you had any mixed apnea (combination of central apnea and obstructive) the home test could have confused or missed those.

At this point you are pretty much hosed as to what is going on. To complicate that they gave you a cpap not a recording autopap. The autopap should have found your ideal pressure, if anything the recording ability of the machine could give your doctor some hints as to what was happening.

Heart palpitations is NOT good. One of two things can cause that, either an untreated obstructive event or a central apnea. Both will cause the heart to race. This is NOT good because it can lead to an enlarged heart, enlarged heart on the right side, once that happens it throws off the normal beating rhythm of the heart were it doesn't pump as efficiently as it should. Overworking the heart is not good.

At this point you need at a minimum a recording cpap like an autopap or a PSG. With it there is a 50-50 chance you can figure it out. I would start by setting your cpap to 8.0cm pressure maximum. Use it see what happens (the risk of CA is low at 8cm). Set CFLEX=2.

If you continue to wake up with heart palpitations then you need to obtain a autopap for finding your pressure. If the heart palpitations stop then you have your answer, central apnea during REM sleep. Other signs this could be happening is if you wake during the night for no reason and instead of just being aroused momentarily you are awake.

If you are having a problem with your heart, I'm sure a simple EKG in your doctors office could spot that.

You sound like me! Also sounds like you've had all the tests to check for anything else serious going on and they all came back okay.

I've had problems with "skipped beats" (PVC's) rather than palps on and off for years, mostly due to anxiety and stress. Sometimes a lot; sometimes not so much. Had all the tests just like you. When I started cpap two months ago, they got worse and I had shortness of breath all day long. I was miserable. About two weeks ago, I noticed the PVC's were pretty much back to normal (well, normal for me!). Also, the shortness of breath, if I have it at all, is just for a half hour or less when I get up. Personally, I feel it's my body getting used to the machine. No scientific or medical proof of that, but it appears from what I've been through so far, that has to be the answer. Another term I've seen for it is "air hunger."

Also, I was so stressed about the breathing thing, I ordered a pulse oxemeter just so I could stick it on my finger and check my blood oxygen levels when I was short of breath! Rarely use it now.

There is the option of a dental appliance for sleep apnea, espeically since you have a mild case. You would need to see a dentist that specializes in oral appliances for OSA, not just any dentist.

Wish I could be more help other than just sharing my experience. I know this is frustrating and upsetting.

Hope this helps some.

Pam

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

As Blarg said, too complicated for forum analysis. However, I do have a couple of suggestions.

1. Have you tried not using cflex? Cflex might be throwing your breathing off. That is the case with some people here. You could turn cflex off for a night or two to see if that helps.

2. Maybe you just need oxygen at night instead of cpap. (and I know next to nothing about oxygen needs).

[quote="WearyOne"]You sound like me! Also sounds like you've had all the tests to check for anything else serious going on and they all came back okay.

I've had problems with "skipped beats" (PVC's) rather than palps on and off for years, mostly due to anxiety and stress. Sometimes a lot; sometimes not so much. Had all the tests just like you. When I started cpap two months ago, they got worse and I had shortness of breath all day long. I was miserable. About two weeks ago, I noticed the PVC's were pretty much back to normal (well, normal for me!). Also, the shortness of breath, if I have it at all, is just for a half hour or less when I get up. Personally, I feel it's my body getting used to the machine. No scientific or medical proof of that, but it appears from what I've been through so far, that has to be the answer. Another term I've seen for it is "air hunger."

Also, I was so stressed about the breathing thing, I ordered a pulse oxemeter just so I could stick it on my finger and check my blood oxygen levels when I was short of breath! Rarely use it now.

There is the option of a dental appliance for sleep apnea, espeically since you have a mild case. You would need to see a dentist that specializes in oral appliances for OSA, not just any dentist.

Wish I could be more help other than just sharing my experience. I know this is frustrating and upsetting.

Hope this helps some.

Pam

Hey, snoredog, I agree! I check my blood pressure daily. I was on Lisinopril, but developed that stupid cough that's a side effect of this medication for a lot of people, so I had to stop it. I went on a beta blocker last summer when I was first diagosed with hyperthyroid (Graves') to take care of the rapid heart rate that accompanies that (it also helps HBP). Now that that's taken care of, I want to get off the beta blocker (hate this medication) and onto a regular BP medication similar to Lisinopril class of drugs, but doesn't seem to cause the cough. (You can't just suddently stop taking a beta blocker--you have to slowly decrease the dosage.)

I'm glad you posted about CPAP possibly causing a need for a change in BP med dosage. Got to thinking it might have also had something to do with a change in my heart rate. My blood pressure hasn't gone down much yet, but my average heart rate dropped about 10 beats a minute. So even though I still need some type of BP meds, hopefully now I can get off the beta blocker, which I hate (said that already, didn't I?) LOL

Pam

Thanks to everyone for responding.

Pam: yes, what I have are PVC's. A Holter monitor recorded them just recently.. no serious irregularities, just the same darned old PVC's!

Others: I don't have high blood pressure and am not on any meds. I do agree that the home study was useless... as my dr. was not happy about that. He is trying to get a clinic study approved with the insurance.

I bought my CPAP out of pocket. I bought the model I did because a rep from cpap.com recommended it as a good starting point. I wished I would've found this board first. I will have to save up for an APAP and software.

BTW, on my titration study nothing in the report said anything about needing oxygen?? Does anyone use oxygen and why? I exercise quite intensely and quite a bit with no breathing difficulty. It's only when I first start exercising (like the first few minutes) that I feel breathless. And that never happened before the CPAP.

Thanks for the suggestions. Hopefully I can get a sleep study approved.

Napagirl

Yesh, it's rather complex for the forum. If you hadn't already, I'd recommend a holter WHILE your on the CPAP. Nothing comes to mind immediately to me....of course...I'm not a doctor either

Napagirl have you ever had your thyroid checked? I use to have that palpatation thing frequently and they found I had a thyroid issue, that fixed part of it. They also found I have mitral valve prolapse and even though they said I was born with the problem this was only found when I was 45 years old and after a thalium stress test.

Dieselgal: Yes, I've had my thyroid checked a million times!! I am always bugging my dr. to check it. And yes, I also have Mitral Valve Prolapse too, diagnosed when I was 17. It is a very mild case.

I am not so worried about the pvc's per se, just curious why they have been worse on CPAP is all. I have lived with them my whole life so I am not too scared of them. They have just become more frequent since I started CPAP therapy. I was just wondering about hyperventilation and how one would know if that was a problem for them from the CPAP machine.

Napagirl