Leaving the hose

Guest · Post by **Guest** » Mon Jun 11, 2007 2:01 pm

After about 4 months on CPAP, I'm going to stop using it. I gave it a fair try - used it every night all night for the 4 month period. I used the software to closely monitor and finetune my treatment with consistant AHI's under 5. I experimented with 4 different masks. I can reasonably tolerate CPAP, but since starting it, my well-being has steadily declined - for the first time in my 43 yr old life.

Almost immediately after starting CPAP, I began having heart palpitations. I NEVER had these before CPAP and I have consistantly had them for 4 months now.

Since starting CPAP, my energy level has been cut in half. I have always been a night person able to stay up very late. But these last 4 months, I'm dead tired by the early evening.

Since starting CPAP, I often NEED to take naps mid-day. I never did this prior to starting CPAP.

I just don't think its helping me. My sleep study indicated an AHI of 15. My wife tells me that I always hold my breath for long periods then exhale. I don't think I have the classical type of apnea. My sleep doc, says I do, but that was based on one night versus many years of my wife seeing how I sleep. I believe that CPAP is interfering with how my body breaths during sleep.

This is just my individual experience. I KNOW that CPAP is helping many - just not me.

oceanpearl · Post by **oceanpearl** » Mon Jun 11, 2007 2:07 pm

Just for information purposes, what machine and mask are you using??

tillymarigold · Post by **tillymarigold** » Mon Jun 11, 2007 3:13 pm

Have you discussed this with your doctor?

Snoredog · Post by **Snoredog** » Mon Jun 11, 2007 3:28 pm

Anonymous wrote:After about 4 months on CPAP, I'm going to stop using it. I gave it a fair try - used it every night all night for the 4 month period. I used the software to closely monitor and finetune my treatment with consistant AHI's under 5. I experimented with 4 different masks. I can reasonably tolerate CPAP, but since starting it, my well-being has steadily declined - for the first time in my 43 yr old life.

Almost immediately after starting CPAP, I began having heart palpitations. I NEVER had these before CPAP and I have consistantly had them for 4 months now.

Since starting CPAP, my energy level has been cut in half. I have always been a night person able to stay up very late. But these last 4 months, I'm dead tired by the early evening.

Since starting CPAP, I often NEED to take naps mid-day. I never did this prior to starting CPAP.

I just don't think its helping me. My sleep study indicated an AHI of 15. My wife tells me that I always hold my breath for long periods then exhale. I don't think I have the classical type of apnea. My sleep doc, says I do, but that was based on one night versus many years of my wife seeing how I sleep. I believe that CPAP is interfering with how my body breaths during sleep.

This is just my individual experience. I KNOW that CPAP is helping many - just not me.

well, we all gotta go sometime, for some, it may be sooner more so than later. All I can say is just hope you go before having like a disabling event like a stroke. You don't want to be left unable to walk or talk just sitting there drooling on a respirator for years on end with your family having to deal with you day in an day out. I don't know, I just have more respect for my family I guess.

But it sounds to me your problem is not all OSA. CPAP only helps with OSA. If you have Central Apnea it is not going to help that, most likely it will make it worse. You need to go drag out your original PSG and LOOK for things unrelated to OSA that can impact your sleep just as much as OSA can.

Your results is pretty common. Sleep medicine only treats the obviously easy stuff, as for the rest? you are are left with to deal with on your own (where you are now as I see it). If you want, post a copy of your PSG here, black out your name and maybe if we see something there we can at least send you down the road in some kind of a direction.

But it's up to you.

OwlCreekObserver · Post by **OwlCreekObserver** » Mon Jun 11, 2007 4:02 pm

TLD, I wish I could offer you some real pearls of wisdom but I can only say that I understand.

I have wondered whether the whole xPAP process negatively affects the quality of sleep for some of us, despite our AHI numbers. I'm no medical professional, but it does make some sense to me. I've never needed a great deal of sleep, but now I rarely get more than five or six hours a night and am tired much of the time and I think that discomfort is a big part of it. Fortunately, I'm retired now so I don't have to be quite as mentally sharp throughout the day.

Even so, I hope that you'll reconsider your decision, or at least make one more appointment with your sleep doc and tell him/her what you're doing and why. Perhaps the two of you can get to the root cause of the problem and find a way to resolve it. Of course as a patient you have every right to reject any treatment, but I would only suggest that you touch base with a pro before you take a permanent hiatus.

Either way, good luck and God bless.

OCO

arthuranxious · Post by **arthuranxious** » Mon Jun 11, 2007 4:07 pm

I think you should consider two possibilities (both apply to some extent to me):
1. You didn't know what tiredness was, you just pushed yourself along. Now you know what it is and you feel it, and that upsets you.
2. Even though the CPAP is doing some good, but since you are not yet used to it you sleep with numerous interuptions and changes in stage and therefore are not as well rested. Nevertheless your sleep is of better quality in some ways, your oxygen saturation is better and therefore you may be healthier, and with time will start improving sleep quality.
I am not encouraged but have persevered despite not having obvious positive results.

Mezzaluna · Post by **Mezzaluna** » Mon Jun 11, 2007 4:09 pm

I hope you don't abandon it!

I was ready to (and did for a couple of months) because of chest pain and pressure. I was also very fatigued. My doctor ruled out a heart attack but in the end she found that I'd had pericarditis for at least two months. I also had rather serious anemia. Once those conditions were treated (with oral prednisone), I returned to the CPAP and have had the benefits of it since.

CPAP does not cause palpitations- I'd bet anything. I propose that you may have an underlying medical/cardiac issue that is aggravated by using the CPAP- but probably not caused by it.

Please don't give up on this! You may have have been given the opportunity to treat some underlying problem that wouldn't have come to light as quickly if you weren't using the machine.

Please let us know what the outcome of this is!

Goofproof · Post by **Goofproof** » Mon Jun 11, 2007 4:23 pm

Bad decision, but bad decision are made daily. If I could I'd throw you a life raft and pull you out of DeNile.

You would do better to get the treatment right. Also have the Dr. get you a heart work-up and a overnight pulse oxy, with a heart monitor. At least it would give your family a better chance. It's going to be harder on them if you decision makes them loose you sooner. Jim

birdshell · Post by **birdshell** » Mon Jun 11, 2007 4:27 pm

It is my humble opinion that Mezzaluna makes an excellent case for your further pursuit.

I would like to expand on that, because who ever said that even the BEST of doctors were infallible?

And, who ever said that this was the exactly correct sleep specialist for you? I firmly believe in seeking a high level of competency AND personalities that mesh with my doctors. There is a lot to be said for good communication with one who will be responsible for your life.

Best wishes, and please know that in my case, 4 months was not even close to having a dramatic difference in my overall sleep health. Even 6 months in, I was calling my improvement subtle, but significant. Reducing my sleep time per day from 12-14 hours to 8-9 hours is a GREAT outcome for me. Who wants to sleep for over half of one's life?

I am hoping that you may have more improvement ahead. However, we all have to do what is best for us AND we are all different. Should you decide to truly abandon treatment, it is my fervent hope that you not find yourself in even worse shape.

Take care and may you make a well-informed decision.

Karen

WearyOne · Post by **WearyOne** » Mon Jun 11, 2007 4:34 pm

Hey, I feel for you.

My suggestion is that you ask your regular physician if you can wear a Holter monitor for at least 48 hours (this would cover two nights). Explain to him/her what's been going on. If you don't know, this is a device you wear all the time that monitors and records your heart. Use your xPAP while wearing the Holter monitor. After turning it back in, they can read over the information and see what's going on at night with your heart while you are asleep.

Please do this before giving up on xPAP. I would also get bloodwork done to rule out other possibilities. It could be the xPAP, or it could be a coincidence and there's something else going on.

Now, when you say heart "palpitations," do you mean a racing heart, pounding heart, "skipped" beats (PCV's), or some combination of these? Does it happen during the day, at night, all the time? Do you wake up in the middle of the night with it? There are various things that can cause any of these symptoms, including thyroid issues and sometimes anemia.

What's your xPAP pressure? When I started out, my pressure was 9. During the day, I had shortness of breath almost all day long. When I'd put the mask on, my heart felt like it was pounding. I told the sleep doc and he reduced my pressure to 8. After that, things started to improve. I don't have those issues now (3-1/2 months into threatment).

Did you have a titration study where you wore the mask while they were testing you? If so, please get that report to see what your heart was doing then.

I'm certainly not discounting that xPAP could be doing some odd things with you, but please don't assume that it is that until you've ruled out other things and spoken to both your sleep doc and your regular physician.

Pam

_________________

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

cwsanfor · Post by **cwsanfor** » Mon Jun 11, 2007 5:26 pm

TLD,

You can have more than one illness at a time. You would be the first case I've ever heard of who suffered a health decline with xPAP in the absence of some other problem, but I'm a newbie, not a doctor, etc.

If I were you, I'd sure consult an experienced sleep physician, if not other specialists.

wabmorgan · Post by **wabmorgan** » Mon Jun 11, 2007 11:13 pm

I am wondering IF you might have some problems with either the Rxd pressure or allergies or a deviated septum that may be interfering with your treatment.

Are you using a nasal mask or a full face mask???

Are you a mouth breather???

If either of these, I would suggest a try with a full face mask, or making an appointment with an ENT.

Or talk to you dr about the problem.

Giving up on treatment is NOT the answer!!!!!!!!!!

You got on CPAP due to some reason.... I suspect you were not as "healthy" as you may think you were. Also, sleep apnea is often proceeded by insomnia, which in itself can make sleep apnea worse.

_________________

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

tomjax · Post by **tomjax** » Tue Jun 12, 2007 6:29 am

If at first you do not succeed, QUIT!!

My advice to you is to pay up your insurance and try to get more.
Make your will.
Explain to those around you why you are probably be leaving them much sooner than you should.
Say your prayers if you believe in such.

Enjoy!!

tom

ehusen · Post by **ehusen** » Tue Jun 12, 2007 7:36 am

Yeesh, guys. Lighten up a bit on the "You must use CPAP or die tomorrow" statements. Yes, I understand that sleep apnea is a serious condition and potentially life threatening. But the guy said he has an AHI of 15. That's not exactly "severe". We don't know about what his desaturations were, which I think are far more important a factor.

We don't know if he had any other health issues as well. He also said he felt okay before getting on CPAP and has felt steadily worse while faithfully using it.

I've been on the hose for more than a year now and I will probably still keep using it, although sometimes I'm not sure why. It is a pain sometimes and the benefits can often seem "subtle" to me.

CPAP therapy is not easy, especially for those who don't notice a visible improvement in their quality of life. Heck, if people always did things just because it was good for them, why do we still have a huge problem with obesity?

Guest · Post by **Guest** » Tue Jun 12, 2007 9:18 am

TLD,

According to your early posts, you have in your profile a REMstar Pro 2 and a Swift mask.
My guess is that you're leaking air out your mouth.
You must have the Encore Pro software if you're quoting AHI figures from your therapy.
Check your leak figures on the software reports and see what they are.

I also noticed that in most of the threads you started, you seldom came back to respond to the help that was offered (I've noticed that others do that, too).

People are trying to help YOU......don't you care?

Den

Leaving the hose

Leaving the hose

Re: Leaving the hose

leaving cpap

Mask

Additional Comments: First use January 5, 2007