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Permalink Reply by RockRpsgt on April 21, 2009 at 11:44am

Central apnea ALWAYS has an underlying reason for happening. I will break them down as simply as I can. !-Over tititration. This happens when the pressure on your CPAP is to high. When the pressure is to high it can actually flush the co2 out of your lungs. As our body breathe to rid itself of co2 the lack of would cause your brain to think that it did not need to breath thus central apnea. 2nd Chronic Heart failure(CHF) will also cause central apnea. This probably would have been something noticed by your Dr. Sleep techs are also trained to notice and document heart arrythmias. This generally gets a diagnosis of Complex apnea. 3rd A problem with the Central Nervous System(CNS) . Most people think that central apnea is just a breathing problem. This is false. It is just as much a CNS disorder as it is a sleep related breathing disorder. As j n k said your sleep Dr. should be able to evaluate which of these is your problem. If your sleep doc is not a neurologist you might want to think about talking to one judging from the problems you have described. Also and I don't want to scare you but you might want to be tested for MS. My wife's family has a history of MS and some of the spinal problems you are having can be a sign. Also this would cause you to have Central apnea. Keep in mind I am not a doctor, and nothing that I have said should go without the advice of one.

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Permalink Reply by Connie B on April 21, 2009 at 6:52pm

Thank you all for your responses I am treated by both a neurologist and a sleep specialist. My sleep studies are so bizarre my doc loves to present them as case studies. Three different Neurologists have tested me for MS over the last 20 years. I am always positive until they get to my eyes, which always checks out normal. I keep a low CO2 but I do not have COPD or CHF I have asked why this continues to be abnormal as well as my alka posthaste continues to rise. I am told not to worry about it. I have just left it to residual problems from second hand smoke. I grew up in a home with five smokers. I never have nor will smoke. I ask why my neurological problems continue to progressively get worse and I am told by my neurologist, internist, sleep specialist, that it is my fibro and I will have to live with it. My fibro specialist in Atlanta is the one that has pushed the issue of the snore guard because I have Autonomic neuropathy and my blood pressure is becoming very unstable more to the high side...
I do have two physicians who are holding out for a different diagnosis - my hematologist who treated me for my hemolytic anemia still feels I have some form of an undifferentiated connective tissue disease.
While my urologist who treats my ITC thinks, it is autoimmune. Since I cannot get any doctors from two states and three major cities to agree what is wrong with me. I treat my self the best I can.

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Permalink Reply by RockRpsgt on April 21, 2009 at 7:10pm

I wish you the best of luck!!!!!!!!!

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Permalink Reply by RockRpsgt on April 22, 2009 at 1:06am

Good call j n k! I did not catch all of the signs. I am truly pretty unexperienced when it comes to complex apnea. Sorry connie

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Permalink Reply by Connie B on April 22, 2009 at 1:50am

My problem with the CPAP is suffocation I simply cannot keep the mask on my face. As I drift off to sleep I wake up gasping for air and ripping off the mask. Since 1995, I guess I have had four or five studies by two different sleep specialists. We have tried every new mask, nasal pillows BIPAP, but I could not tolerate the masks. I tried using a CPAP system twice at home for over six week intervals trying to get use to the mask. No luck. However, this has been a problem all along when ever I am in the hospital and they sedate me without a mask or nasal O2 as soon as I would drift off to sleep my pulse ox would start alarming and wake me up. They tried giving me O2 by a facemask at first but I could not tolerate it because of the suffocation issue. I asked for nasal prongs and slept with no problem keeping a good O2 sat reading. When I started taking xyrem for sleep, which really helps, I was able to keep the CPAP mask on even though it aggravated the heck out of me but I just laid their and dosed off. Every time they tried to increase the pressure over five, I would stop breathing. So I am kind of left in a rock and a hard place. For me I have tried to lose weight, gotten off the more sedating drugs, and working on a snore guard. I thought this was my only options. My fibro specialist wanted me to have nasal O2 at bedtime he said he would write the order if he had the codes. A third sleep specialist also a neurologist said giving me O2 at bedtime would be malpractice. However, I have talked with other CFIDS patients who have problems with central sleep apneas and there is a doc in Nashville who does prescribe nasal O2 for sleep apnea when the patient cannot tolerate CPAP. My current neuro and sleep specialist say it would not help. I think anything would be better than nothing. .

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Permalink Reply by Sandra Limbach on April 22, 2009 at 1:29pm

My daughter had real compliance issues she had to go through all the behavior modification stuff. she finally got to the point where she wears it almost everynight. The few exceptions would be a cold or other discomfort but her compliance is at 99%. It was a slow process but it can work.

j n k said:

Rock,

It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.

Connie,

You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.

If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.

In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!

There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.

I'm begging you here!

jeff

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Permalink Reply by RockRpsgt on May 25, 2009 at 9:31pm

Sorry guys I needed quick access to some of jnk's work so i am posting to bring this back to the top.

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Permalink Reply by Connie B on April 22, 2010 at 5:47pm

I finally found a doctor in my own back yard who made a mouth device for my sleep apnea the difference in my sleep study was amazing. I am also getting better about sleeping on my back. The doc who designed and fitted my mouth devised and treats my TMJ feels that I should also eventually wear CPAP with my device. For the best results possible. However they still do not understand why when they increase the pressure of the CPAP my O2 stimulus to breathe decreases. I wanted to know if you would give me the full name of the mask you were suggesting and the type of behavior modification everyone is talking about. The sites you listed is this where I can find this information? Thanks.

j n k said:

Rock,

It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.

Connie,

You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.

If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.

In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!

There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.

I'm begging you here!

jeff

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Permalink Reply by Walt Service on April 23, 2010 at 12:41am

Hi Connie,
First off...I'm not a MD, just a sleep tech. I've seen many folks who have "central like apneas" when first starting cpap, a common problem. I would also very interested in your doc actually thinking about complex sleep apnea as an issue for you.
For those pts of mine who have trouble with tolerating their cpap at night, I suggest to them to practice with their cpap while they're awake; watch tv for a couple of hrs a day while just wearing the mask with their machine off. Then a couple of weeks of wearing the mask with the air on...this way they slowly acclimate themselves to wearing it; like teaching a house cat to like water.
Don't give up...keep us informed...keep asking for help as needed!

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Permalink Reply by Connie B on April 23, 2010 at 1:54am

Thanks for the information I will look into it. I am constantly looking for something besides medication to fix one of my many problems.
Determined to be healthy again,
Connie

j n k said:

CB,

This is one of the masks that is "barely there":

http://cpap.com/productpage/resmed-swift-fx-nasal-pillow-cpap-mask-...

Cognitive Behavioral Therapy is the therapy that seems to help the most:

http://respiratory-care-sleep-medicine.advanceweb.com/Article/Cogni...

I hope that helps. I am glad you are still going at it.

Please ask more questions if you need to.

jeff

ps- Thanks to Judy for PMing me, so that I saw this latest post, so I was able to post this while on vacation in KY. :-)

Connie B said:

I finally found a doctor in my own back yard who made a mouth device for my sleep apnea the difference in my sleep study was amazing. I am also getting better about sleeping on my back. The doc who designed and fitted my mouth devised and treats my TMJ feels that I should also eventually wear CPAP with my device. For the best results possible. However they still do not understand why when they increase the pressure of the CPAP my O2 stimulus to breathe decreases. I wanted to know if you would give me the full name of the mask you were suggesting and the type of behavior modification everyone is talking about. The sites you listed is this where I can find this information? Thanks.

j n k said:

Rock,

It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.

Connie,

You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.

If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.

In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!

There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.

I'm begging you here!

jeff

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