Machine set too high

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Machine set too high

Postby krisy252 » Mon Jan 10, 2011 5:53 pm

Four years ago I was diagnosed with obstructive sleep apnea and have faithfully been using my cpap machine every night. But I never did notice an improvement in my energy levels. If anything I am more tired now than I was before starting cpap treatment and I have developed a case of severe insomina- without medication I won't fall asleep until the early morning hours, doesn't matter how tired I am.

Recently I went back to the sleep lab and they said that my level was set too high. I was at a 13- they tested me at the lab and said that I would be fine at a level 5.

My question is having the machine set way too high for such a long time, could that cause the extreme tiredness I've been feeling? Also someone mentioned to me that if your machine is too high it can cause central sleep apneas- is this true and if so where could I find more information about this? I really want to get to the bottom of what might be going on. Thanks in advance to anyone who can offer suggestions or information.
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Postby Janknitz » Mon Jan 10, 2011 9:24 pm

I think this is a case of leaving your health in other people's hands. That is not a good idea with CPAP.

First, you went FOUR YEARS without really feeling better and never complained???? If so, why not? Was there any follow up from your physician, sleep lab, or DME?

Secondly, is your machine data capable? Do you even know? Did you ever check your data to make sure that the treatment was being EFFECTIVE for you or perhaps to try to figure out if there was a problem that could be fixed so you might feel better?

I don't mean to get on your case. Most people put their care in the professionals' hands and expect the professionals to figure all this out for them. It works for some things, but CPAP therapy isn't one of them. If you don't know what's going on and take control of your therapy (by understanding what's happening and learning how to determine that it's effective) nobody else, apparently, will do it for you.

Perhaps you were having central apneas caused by pressures that are too high, and that's why a lower pressure is best for you.

Now that your machine is set to 5 instead of 13, are you feeling any better? Are you getting any benefit from your machine? If not, you need to take some responsibility here. Find out if your machine is data capable and how to access the data so you can share the information with your doctor. If you machine is not data capable, you need to talk to your doctor and be sure that your lack of benefit is addressed.
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Postby krisy252 » Mon Jan 10, 2011 11:44 pm

I understand that and believe me, I have not left my health in other peoples hands. These past few years I've been bounced from one doctor to another, not giving up because I knew something wasn't right. The problem is where I live you cannot go to a sleep lab with just any doctors referral. You have to see the sleep specialist (who only comes in every few months from out of town) and unless he gives you the green light, you can't go. Everytime I would go to see him to complain all he would do is say he'd increase the pressure (I went from 9 to 11 to 13) and when I'd report no change my tiredness was blamed on chronic fatigue syndrome.

So I went out of town to see a specialist in chronic fatigue syndrome and after being told that it doesn't explain all my symptoms I came back home and tried to get a referral to go back to the sleep lab but no luck. Thankfully my family doctor was able to refer me to another specialist but I had to wait a year and a half to get in. Right away he saw a need to be readdressed but he had to still go through the other doctor to get me in and then I had to wait my turn for my appointment. So it's been quite the saga! Although I'm glad I didn't give up.

My machine is not data capable. When I bought the machine I made the mistake of going low end due to my lack of income (I was a student at the time and had no insurance). Believe me when I get a new machine next year I will not make that same mistake again.

Tonight will be my second night trying out the new pressure so I'm anxious to see if there is any difference after a few days on it. In the meantime I'm just trying to figure out if having the pressure too high could explain my tiredness and if central apneas might be related. I looked online for more information but wasn't able to find much. So if you or anyone else has information on that I would be most appreciative.

Thanks for taking the time to reply!
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Postby LJCIM » Tue Jan 11, 2011 1:59 am

;-) Hi I'm new to this , but I read your post. I had my first sleep test 4 yrs ago. Ive been to 3 different sleep clinic's the first one had no time to deal with me because it was so hard to get use to a mask, the sencond said I had narcolipsey and the third said I had server sleep apena. I've been set on a very high level. (But I dont see how you could handlle a level to high) if mine was to high in the begining I couldnt breath... so the fact that you could wear it tells me it wasnt to high. but I dont know... like I said I feel the same way you do, now there also calling it chornic sleep disorder. The machine to me has done nothing I've almost had a few car accidents falling asleep driving I have to take adderall to keep me up.
so,e mornings I cant get up or it takes all moring just to function then Im slow moving or Ill wake up feeling ok but it doesnt last more then 2 hrs after that if i sit ill fall asleep, my youngest son is 11 and its sad because i have no energy
getting him off to school. i dont know who to turn to anymore or what to do what dr to see.. any advice at all
Thanks :-k ljcim
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Postby ShellyB » Tue Jan 11, 2011 11:18 am

I can understand how she went that long with too high of a setting. I think the whole area of sleep apnea is a sad, sad mess. You have your primary doctor, your sleep doctor, the sleep lab and then the therapist where your machine comes from. No one explains jack sh** on what you should be feeling or not feeling, what machinery or masks are available. My machine has hardly any readings so unless my AHIs or leaks are really really bad, I would have no idea. If I question anything I get the run around, go to your family doctor, no go to the sleep doctor, no you should see the therapist. So, 3 appointments and $$$ later, nothing accomplished and I feel more confused than ever.

I wouldn't recommend my sleep center for sleep apnea patients that's for sure.
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Postby LJCIM » Tue Jan 11, 2011 2:12 pm

hI yES YOU SAID IT UR REG DR DOESNT HAVE A CLUE THE SLEEP DR GOES BY THE TESTS AND RELAYS MESSAGES TO THE COMPANY WITCH THEN SHIP THE WRONG STUFF IT IS CRAZY AND i'VE HAD TWO DR'S DROP ME BECAUSE i GET UPSET ABOUT ALL THE BULL.
SO WHAT DO WE DO???
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Postby LJCIM » Tue Jan 11, 2011 2:14 pm

AND i NEVER KNEW WHEN MY MASK WAS LEAKING BECAUSE NO ONE TOLD ME THERE WAS A DEVICE ON THE MACHINE THAT WOULD BE IF THE MASKED LEAKED i FOUND IT PLAYING AROUND WITH THE MACHINE AND BELIEVE ME IT LEAKES...
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Postby Vicki » Tue Jan 11, 2011 2:17 pm

Krisy,

To answer you question, yes, too high a pressure (and if your last titration was correct your pressure was way too high) will cause central apneas and disrupt your sleep as much as untreated OSA.

High pressures cause central apneas because the primary signal to breathe is actually a rise in carbon dioxide. High pressures literally "blow off" the carbon dioxide and our brains don't get the signal to breathe until either the CO2 level goes back up or the oxygen level drops to a trigger point to breathe.

Vicki
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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby LJCIM » Tue Jan 11, 2011 2:27 pm

I DO NO THAT IF MY MACHINE IS TO HIGH i CATN HANDLE THE INTAKE AND THAT ALONE WIL MAKE IT SO I CANT BREATH,,
So again I don't know how it can be worn on a high level if it is not needed, I have been to 3 sleep clinics one did narcalopsey also all positive im told that having both is not possible so i have been on the higheswt dose of air on a be pap so the pressure when I breath out will not a such a great force but the pressure ws so high it would blow the mask seam off so we lowered a bit besidesw leakes I can tolerate this type of machine but no better sometimes worse lifeless like my body wont move at times. I sent away for the pillow no help im going to try the liners they have out to help with the leaks, but sleep apena will cause alot of these systomes if your not getting the oxgen you should be getting even balance my counts have all gone down iron my d levels and it's because of the sleep apena i now get extra heart beats not all the time but alot also from lack of oxgyn its nothing to fool around with it wil shut you down you need your oxgyn, lyme systomes would be a little different in areas,,, #-o
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Postby dreamlady » Tue Jan 11, 2011 6:20 pm

Lori,

I'm not trying to be difficult, but if you could use periods we might be able to understand what it is you're trying to say.
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Postby Vicki » Tue Jan 11, 2011 7:04 pm

Lori,

It is certainly possible to have both obstructive sleep apnea (OSA) and narcolepsy. They are completely different disorders. If you are in the U.S. you have a legal right to your medical records. Go to the sleep labs and get copies of your full sleep studies. Post the results in the "Sleep Studies" forum and maybe we can help you figure out what is going on. If you need a high pressure and you are not getting it, then your OSA is not being corrected. I understand that you are having leaks, so you need a high enough pressure to open your airway and you need to keep trying different masks until you find one that will not leak at the pressure you need to open your airway.

Start a new thread because we want to make sure someone sees your post and it is buried here in another topic now.

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby Janknitz » Tue Jan 11, 2011 10:01 pm

Yikes, Krisy,

You've really been knocked around by some poor treatment. Your doctor may be well-meaning, but changing your pressure without data to see what's going on or support the decision is taking shots in the dark. Imagine treating diabetes that way--no blood glucometer to tell if your blood sugars are under control. "Oh, you still don't feel well? Well let's up your insulin dose a little. Still don't feel better? Let's increase it a little more." Now, diabetes is a lot more immediately dangerous and that would be malpractice. IMHO, it's malpractice in sleep apnea too! A full on sleep study is not necessary, but they should have had you trial for a week or two with an auto adjusting and data capable machine to at least see what's going on. Or at least an oximeter! I don't understand the logic in allowing patients to get non-data capable machines except that the doctors don't want to be bothered with follow-up care because they make most of their money on sleep testing and interpretation. IT's shameful!!!!!!!!!!!

Glad to know you're on top of it and will soon be replacing your brick.
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Postby krisy252 » Tue Jan 11, 2011 11:48 pm

Vicki,

Thank you so much for the information! That makes so much sense because like I said I feel worse post-cpap then I did beforehand and I know other people with sleep apnea and when they started cpap most of them noticed a dramatic improvement. This gives me hope that at this new pressure I will start feeling well again!!

Jan,

That is a great anology and once I wholeheartedly agree with. Instead of dealing with the sleep lab I'm going to try contacting one of the dealers who sells cpap machines here and see if they will lend me a data machine to make sure the new pressure is working. Thanks for the idea!

I still can't believe that all of my tiredness from the last few years is as simple as having too high of a pressure. It's hard not to feel really angry at the way I've been treated (or in this case not treated), but as soon as I start getting restful nights sleep I'm sure the joy of that will wipe out any bitterness!
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Re: Machine set too high

Postby sluna34 » Fri Aug 26, 2011 4:26 am

@krisy252: You say you went from a pressure of 13 to a pressure of 5. i dought your going to get any help with that pressure cuz that pressure way to low. See i know this cuz i work as a polysomnograph technichian and when we start our titrations we start at a pressure of 6.0 cm/h2o and increase as pt has respiratory events. Now i know you been through alot with this Dr. but maybe its time to find another. I know most insuraces would not cover anything below 6.0.
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Re: Machine set too high

Postby Mrs Rip Van Winkle » Fri Aug 26, 2011 11:44 am

Krisy...and other posters who have tagged onto this thread seeking answers. One thing I find that is VERY important is to learn everything you can about SA. Read, Read, Read. Knowledge is power, you will also have better SA communication skills with your medical team.

I agree with Sluna34, I am thinking 5cm's is too low...but then, I am not a doc. Request copies of all your sleep studies...this is not a simple Dr dictation, but a 5 to 7 page summary report for each study. Then as said above, post it in the sleep study forum. This may contain many of your answers.

As for having SA and having Narcolepsy...I have both. Only way to find out is to have a sleep study followed by a 'day' study. The day study is called MSLT...they will have you take 4 to 5 naps two hours apart.

As for still being tired, I am a zombie...but it is not caused by machine..it is other conditions I have. Some of those are aggravated by my machine...but I have to use it. Your fatigue could be caused by many other things with your therapy. DO you have a nasal pillow mask..or nose mask? Maybe you are opening your mouth in your sleep. Maybe you have high leaks, maybe your humidifier is set too high or too low, maybe you have PLMS and that keeps you from hitting the proper stages of sleep...regardless of CPAP. There are several sleep disorders...you may have more than just the sleep breathing disorder of SA.

How has your compliance been? How often do you use your machine?
I'm only a sufferer, not a medical pro. What I post are my thoughts as a sufferer, not that of the ASAA. As a moderator on these forums I oversee the posting rules. This is the internet, always discuss what you read with your medical team.
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