"please keep me updated about oximeters "
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Failure to respond to CPAP
I have been under treatment for Moderate sleep apnea since 2007. I have had multiple sleep studies, with and with out CPAP. In 2009 I was still having extreme difficulty with concentration and staying awake at work. I had surgery on my nose, and a UPPP. That didn't help, so more sleep studies, followed by four naps the next day. Diagnosed as severe hypersomnolens, and mild to moderate sleep apnea. They titrated the CPAP pressure, still no relief. I did an overnight contiuous pulse Ox study that showed that I dropped down to 64%. Now I am using oxygen at 2 liters with the CPAP. I don't have much of a life anymore, I go to work struggle to stay awake, and then come home and sleep for a couple of hours, get up and do the things I have to , then to bed and start the cycle all over again. It is torture to feel this sleepy, and try to stay awake, I am also taking 200 mg provigil in the day to help, and it does but if I take more I am just like a hyperactive kid, and I don't get anymore accomplished at work than I would have if I had been fighting sleep all day. Are they missing something, I don't get it why I don't respond. MY family doctor had me try antidepressants, and they really made me feel aggitated, and irritable. I can't go on like this, does anyone have any ideas, or personal experience?
Views: 777
Replies to This Discussion
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Permalink Reply by Mark Douglas on
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Margaret -- wow, you have been through so much! Hard to grasp that your oxygen got down to 64%. Even with CPAP and oxygen and provigil you are still that fatigued?
I was fatigued too -- but not nearly as serioiusly as you. I was on CPAP that didnt seem to help. Provigil did help. I didn't know it then, but I had serious heart disease, and had 5xbass one month ago. I assume much of my fatigue was caused by that disease -- but Im not sure.
That surgery did help, Im in cardiac rehab now, and getting more energetic daily. ( I realize exercise is the LAST thing you would consider if you are fatigued.) I try not to take provigil, and instead try to exercise according to the rehab plan.
Have you been to a cardiologist? Have you had the stress test -- echo - and whatever other lovely test they have? The echo test can tell very critical things -- like what percentage of blood is being pumped the right way, and how your valves are doing.
Assuming your lungs and blood work are okay, I cant even guess would be the matter, other than a heart issue.
I have read where low oxygen overnight is BOTH a cause of heart disease, AND an indicator of it. So if you haven't had a cardiologist evaluate your heart's pumping ability, maybe you should.
Our hopes and prayers are with you. I also hope you have some good support around you, some family, friends, someone who is your advocate.
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Permalink Reply by sleepycarol on
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Which machine are you using? What are your pressure settings? When napping do you continue to use the cpap? What mask are you using? If it is a nasal mask are you loosing therapy out your mouth? Do you use your machine EVERY night ALL night?
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Permalink Reply by MARIE G. on
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There is a possibility that cpap therapy is ineffective in certain individuals. This was the case with me - I tried it up to the max pressure of 20 cm. While I did have some improvement it was ultimately ineffective. I went on to have the MMA jaw advancement surgery. It was not 100% effective but since my airway is much larger, cpap is now effective at a lower pressure setting.
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Permalink Reply by susan mccord on
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Hi Margaret! Gotta tell you I agree completely with Mark. I was diagnosed with heart disease nearly 5 years ago. My best immediate thought is that you should have a COMPLETE cardiac workup done immediately, preferably by an intervention cardiologist. Women often have NO classic heart symptoms when, in fact, they may be very ill and don't know it. I don't mean to frighten you--but there is SO much they can do to diagnose these days, and heart stuff is FREQUENTLY overlooked with women (as is apnea with many of us).
Another thought I have is to wonder what your thyroid's doing. Have you had a full thyroid workup recently? I have thyroid problems as well, and when my replacement medication is not at an appropriate dose, I can hardly move. Thyroid symptoms can increase for no apparent reason--again, may have been overlooked. If your family M.D. hasn't tested you for thyroid, he/she may not be the best MD for you right now. I'd encourage you to ask for a COMPLETE thyroid blood workup
Another possibility could be an inflammatory conditon, i.e., lupus. Inflammation is a serious problem and again, often goes unnoticed for it's negative, and sometimes dangerous, effects on all kinds of body systems. I'm prone to lean toward wondering about a blood disorder as well, particularly with regard to inflammation.
In general, full blood workups can often reveal all kinds of issues that may need immediate attention. But boy, I sure would encourage you to get after having a thorough cardiac workup ASAP. Better safe than sorry--if it turns out well, you can at least eliminate the very real possibility of heart disease--could be a pumping problem OR a blockage problem, either of which can be treated when diagnosed properly.
Just as an aside, I've had exceptional care by a YOUNG cardiologist--he's younger than my children!!--but the younger cardio docs have had more extensive training and are much more aware of diagnostic procedures, especially for women. Our symptoms often bear little resemblance to those that men present. So I'd recommend a younger, intervention cardiologist--they tend to be more assertive/aggressive with diagnosis and, if needed, treatment, especially with women.
Please feel free to contact me if you have any questions in this regard. I don't claim to be an expert, but I've been there, done that, and your symptoms are dramatic and bear a thorough workup, with complete labs to test for everything!! If you want to talk privately, you can private-mail me on SG.
Take care and good luck.
Susan McCord :-)
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Permalink Reply by Tim on
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People blame their CPAP for many things, even though it is doing exactly what it is designed to do. The CPAP is probably doing its job, but you have problems in addition to sleep apnea. What is your AHI while using CPAP? Your CPAP is doing its job if it gets your AHI below 5.
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Permalink Reply by Mary Z on
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One night I had an AHI of 6.5, before and after that, in spite of a pressure increase, it averages 14.3/ month reading.
My next visit to the sleep doc I'll see what else we can do, a full cardiac workup, a visit to the ENT?
I'm at 24/20, don't really see where we can go from here, each pressure increase has not changed my numbers (yet). A recent sleep test resulted in the increased pressure, though my 02 sat remained fine. Oh yeah, 0.0 leaks with my FitLife mask.
My family practice doctor (who sent me for the sleep study) is completely unconcerned since I am not having "symptoms" other than needing Nuvigil and a small dose of Adderal every day. I think I need another family practice doctor for one thing.
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Permalink Reply by Rooster on
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What jnk said.
It is very common for patients with your symptoms to be using some combination of the wrong mask/wrong machine/wrong settings.
You need a CPAP machine with software to report to you daily how you are breathing at night. It shows such things as apneas, hypopneas and mask leak.
Either buy one or talk to your doctor's office about temporarily using one from the doctor's office or the DME. It is common to loan out machines and then the doctor will read the card after some nights of use.
You could have a heart problem, heck you could have a broken leg, but being a betting man, I put my money on an ineffective CPAP therapy. I have seen it too many times.
Every patient should have a machine that reports on the effectiveness of the therapy.
Do let us know how things proceed for you.
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I have a ResMed S8 VPAP Auto that is fully data capable, I quit using the ResScan software as it ddn't really tell me anything that the daily numbers and averages for a wk, month. 6 months and one year (not there on this machine, yet). My mask leakage is 0.0. Unless my IPAP of 24 and EPAP of 20 are much too high. I don't know what else we could be doing CPAP wise. I've never had good numbers as we've worked ourselves from a CPAP of 9 to a Bilevel of 15/12 and on up to my present range
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Just to be clear, my response was to the OP, Margaret Williamson. I assume Margaret doesn't have a data-capable machine since she doesn't mention any efficacy numbers.
Mary Z, I know you have worked very hard and have a good grasp of how to measure the effectiveness, or lack thereof, of you therapy. It would seem CPAP might never be more than a suboptimal solution for you. Have you read Dr. Mack Jones's book, Deadly Sleep?
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