I need some hope.

[pattyo]

HI, Back in May of 09 I had my first sleep study. Central sleep apnea! I've tried 4 masks and nothing worked> I simply could not sleep. In August I went to my ENT doc because it was protocol after a sleep study. He said that my nasal passages were very narrow. Long story short, a week ago I had a septoplasty and bilateral turbinoplasty. In a few weeks I should be able to breathe clearly through my nose. Then it's back to the cpap. I almost go into panic attacks when I think of wearing it. Is there hope for the hardest cases, and has anyone ever found it easier to wear the cpap after a septoplasty. I don't know what else to do. Thanks. Pattyo

[JohnBFisher]

HI, Back in May of 09 I had my first sleep study. Central sleep apnea! I've tried 4 masks and nothing worked> I simply could not sleep. In August I went to my ENT doc because it was protocol after a sleep study. He said that my nasal passages were very narrow. Long story short, a week ago I had a septoplasty and bilateral turbinoplasty. In a few weeks I should be able to breathe clearly through my nose. Then it's back to the cpap. I almost go into panic attacks when I think of wearing it. Is there hope for the hardest cases, and has anyone ever found it easier to wear the cpap after a septoplasty. I don't know what else to do. Thanks. Pattyo

Lordy, lordy ... your post definitely touches near and dear to my heart! I'll take a stab at helping.

Pattyo, you've got the double whammy of having both nasal issues and a fairly rare issue with central sleep apnea. I am fortunate that I don't have too many problems with my airway. And I thank God regularly for that! Bless your heart. It's a major pain in the tail end to try to use xPAP thereapy when you have a hard time breathing. Just ask any of us who've had a cold and tried to sleep with their unit. Yuck!

A couple thoughts come to mind ... First, you have an ASV unit, not just a CPAP. It's great that your sleep specialist knows about an ASV unit to help with the central sleep apneas. Not all of them do know about that as a therapy. However, the downside is that you did not try to get adjusted to CPAP and/or BiPAP ahead of using an ASV unit. And boy, howdy! An ASV unit can be quite a wild ride - even if you are used to xPAP therapy.

I've been on CPAP/BiPAP and now an ASV unit for almost 20 years. Even so, I still find my ASV unit a bit discomforting. There I am falling asleep and it starts to crank up the pressure because I stopped breathing. And anyone who thinks that's okay does NOT know what it's like to have the pressure swing from a moderately low EEPAP pressure (often around 10) all the way up to 20+. YIKES! Talk about problems with leaks. My mask leaves a distinct impression in my face and I only get a "good" score on the leak rate.

So, you may need to get the Encore Viewer software and a Smart Card reader (from CPAP.com as an example). Then you can see what happens as you sleep. Are you having problems with continued apneas? Are you having problems with periodic breathing? Are you having problems with leaks?

In other words the best way to deal with the issues is to face them head on and try to manage the situation (and your therapy).

But yes, I think you will find that you can achieve MUCH better sleep. Trust me, I do know how you feel. I was afraid that I would die within the year. I felt that terrible. But I'm starting to get better sleep. I'm starting to drop my weight again. I'm starting to be able to walk again. I have hope. And I know that if you stick with it, you will be able to find a path that works for you.

It takes some commitment. But shoot! So did your recent surgery. Being able to breathe better will definitely help improve your ability to tolerate your ASV unit. It will help a lot.

So, hang in there. I think you'll find that between this site and some determination (that you clearly demonstrate) you will find a path that works well for you. And you will finally be able to get some good sleep.

And here's hoping that's enough hope to encourage you forward!

[Ruffinit]

A couple thoughts come to mind ... First, you have an ASV unit, not just a CPAP. It's great that your sleep specialist knows about an ASV unit to help with the central sleep apneas. Not all of them do know about that as a therapy. However, the downside is that you did not try to get adjusted to CPAP and/or BiPAP ahead of using an ASV unit. And boy, howdy! An ASV unit can be quite a wild ride - even if you are used to xPAP therapy.

I've been on CPAP/BiPAP and now an ASV unit for almost 20 years. Even so, I still find my ASV unit a bit discomforting. There I am falling asleep and it starts to crank up the pressure because I stopped breathing. And anyone who thinks that's okay does NOT know what it's like to have the pressure swing from a moderately low EEPAP pressure (often around 10) all the way up to 20+. YIKES! Talk about problems with leaks. My mask leaves a distinct impression in my face and I only get a "good" score on the leak rate.

John-
Thanks for explaining this. I had the feeling that I was the only one having these problems. I have just started using an ASV unit the last week in December. Because I've never had the CPAP/BiPAP, I had nothing to compare it to and thought I was the one with the equipment problem. I have the same equipment as you except that the nurse had a Drive FFM and let me try it. It makes a huge difference after I changed the headgear out with a Mirage Liberty. Hardly any more leaks. When that thing cranks up I feel like the Mighty Mouse balloon in the Macy's parade.

As I noted in one of the other threads, I've never had anything like this. All this "treatment" came out of the blue. I have never had any of the symptoms. The one telling factor (which I had no knowledge of) was that my wife has told me that since we were first married 30 years ago at 19 that sometimes I stop breathing during the night. That's it. Turned out I also have CSA. There's very little even here on CSA. The pressure at 20+ pops my ears and in some cases makes them ring for hours afterwards. I have a constant mask and strap impression on my face. My eyes water and my mouth, nose and throat dry out..

I have a restrictive windpipe and while the doc says they could try to do something about it surgically, there's really no guarantee after they get in there that they could do anything at all. It's the throat itself that is restrictive.

I'm glad it's not just me.. Sorry there's others out there.

Again, thanks for explaining the difference.

[kteague]

Hello and welcome. On the tech side of treatment with an ASV, I'm no help. Just want to wish you well in recovery from your surgery and in finding your personal best mask. I was a bit panicky in the beginning, but now it makes me more panicky to think of NOT using the mask. I find a bit of security in this treatment.

Best wishes.
Kathy

[JohnBFisher]

... I had nothing to compare it to and thought I was the one with the equipment problem. ...

Yeah, even the respiratory therapists don't know what it's like to wear one of these critters. Even if they did wear one, unless they had CSA or periodic breathing, the machine would not do those funny oscillations it does ... because it would not detect problems with their breathing.

So, you often need another ASV user to know what's normal and what needs adjustment.

... I have the same equipment as you except that the nurse had a Drive FFM and let me try it. It makes a huge difference after I changed the headgear out with a Mirage Liberty. Hardly any more leaks. ...

Glad you found a mask that works well. It can make all ther difference in the world.

... When that thing cranks up I feel like the Mighty Mouse balloon in the Macy's parade. ...

Now I know who to blame when my wife wonders why I start to giggle to night when my ASV unit starts to crank up the pressure!

... All this "treatment" came out of the blue. I have never had any of the symptoms. The one telling factor (which I had no knowledge of) was that my wife has told me that since we were first married 30 years ago at 19 that sometimes I stop breathing during the night. That's it. Turned out I also have CSA. ...

I've apparently had some symptoms for quite some time. My current neurological diagnosis is Sporadic OPCA. That's more of a "holding pattern" diagnosis than anything. There's no hereditary problem (thank goodness!). My wife noted I've always been a bit awkward. And like you I would also just stop breathing. Of course the most severe problem then was the obstructive apnea. In my case that runs in my mother's side of the family.

But I've had sleep specialists tell me that central apnea is very rare, so I must not have it. DOH! That's REALLY bad logic. If I have the symptoms, then test to see if it is an issue. If so, help me treat it. Fortunately my current sleep specialist finally listened (and he's really good) when he tried to send me back for another BiPAP titration (after I had a miserable night on my last one). I asked him "So, what's going to change?". He knew I had problems with central apneas. He knew I probably have a biological reason for it - probable problems with my brainstem. But even so, they see so many patients who don't have that type of problem, doctors often go with what they know.

But when he looked at the data, he started to talk about an ASV unit. My research had already indicated either a BiPAP S/T or an ASV unit would probably be the option I would need. The ASV titration made it clear for me that a BiPAP only (even with the S/T mode) would not meet my needs. Though I slept poorly during that sleep study, I slept so much better than I had in months - or even years. I reached deep and REM sleep quite quickly. It felt wonderful!

So, you were very lucky to have a sleep specialist who did not dismiss your symptoms.

... There's very little even here on CSA. ...

It's really very rare to have CSA without an underlying condition. Even with something like cardiac problems it is fairly rare. Though I don't like it for those that have the cardiac problems for folks like you and me it helps there are those folks who also develop CSA.

I'll send a PM with a few PDF files about CSA. They are very technical medical research articles I've found.

Eventually, I hope to add some information in the Wiki about CSA. There are some of us here who struggle with it.

... The pressure at 20+ pops my ears and in some cases makes them ring for hours afterwards. ...

I fear I don't have any instant cures. You may develop tinitus (ringing ears) due to the therapy. But I found that after about six months on CPAP I was able to "pop" my ears to adjust to the pressure. So, it's mostly second nature to me now. But even now, as I put on my mask I sometimes lift my mask from my face to allow me to "pop" my ears than settle the mask back in place.

... I have a constant mask and strap impression on my face. ...

Most people don't notice the mask impression, but the strap impressions can be very visible. You might want to look at Pad A Cheed at:

http://www.padacheek.com/

I mostly don't bother with it. I generally find a good face scrubbing in the morning helps lessen the impression of the straps and the mask.

... My eyes water and my mouth, nose and throat dry out.. ...

Ah, two things will help here.

First, it will take you time for your body to adjust. Afterall, for most of your life you were not attached to your shop vacuum (in reverse)!

Second, you may want to increase the humidity from the integrated Humidaire 2i humidifier. You might need to put on a hose cover to help avoid rainout. Besides that I find the hose clips that the ResMed VPAP Adapt SV use for the pressure line are a pain in my neck (literally). [ I sleep with the hose under my neck to keep it in place. I toss and turn very little anymore, since that only makes mask leaks a nuisance. ] I have a hose cover and it helps. But I am thinking I might get one of the Pad A Cheek hose covers. Better padding and insulation.

But even with an increase in humidity, you may have more problems with that. Since you don't have obstructive sleep apnea, you probably were not much of a mouth breather. So, you may just need time to adjust.

... I have a restrictive windpipe and while the doc says they could try to do something about it surgically, there's really no guarantee after they get in there that they could do anything at all. It's the throat itself that is restrictive. ...

Ouch! I always hate that type of offer. We might be able to help, but it may make it a lot worse. or do nothing at all. I fear I'm great friends with Mr. Murphy. If I had such surgery, it would go all wrong. But that's just my luck.

... I'm glad it's not just me.. Sorry there's others out there. ...

That is the value of this forum. You may be the only patient your sleep specialist has with CSA. You could be one of a handful (at most) in your area. But come here and you can find plenty of others with similar issues. it really helps.

... Again, thanks for explaining the difference. ...

Happy to help. It's one way I can help others avoid some of the problems I've faced. And as you see, it's one way I can try to live out my own beliefs. As my signature notes, we should be the difference we want to see in the world.

[Kiralynx]

Pattyo,

Getting adjusted to an ASV -- well, my opinion is that it's far and away the easiest possible machine to get used to. I couldn't tolerate a CPAP at all -- couldn't breathe out against the same pressure as used for inhalation worth beans. Don't know if I actually ever tried a regular Bipap. I think I did for my titration, and I* had a devil of a time with it. But once the ASV was adjusted properly, it was very easy to adjust to.

I don't know about using xPAP after surgery like you've had. Haven't been there, and plan on avoiding any more surgery if I can. (Had cancer surgery in April of '08.)

If, however, you are well healed when you start back, I would think that re-adjusting of your ASV therapy would be much, much easier, since you'll now be able to BREATHE!

[Ruffinit]

So, you were very lucky to have a sleep specialist who did not dismiss your symptoms. ...

It was my first shot, so it was luck. He uses a CPAP machine himself.

... I'll send a PM with a few PDF files about CSA. They are very technical medical research articles I've found. ...

That'll be great. Thanks.

... Second, you may want to increase the humidity from the integrated Humidaire 2i humidifier. You might need to put on a hose cover to help avoid rainout. Besides that I find the hose clips that the ResMed VPAP Adapt SV use for the pressure line are a pain in my neck (literally). ...

I have had the 2i turned up all the way since the second night of using it. It's almost empty in the mornings and I've just recently turned it down to about 5 1/2. I don't get rainout and the hose is dry in the mornings. May help that on my first alarm (clock) I turn it off, take off the mask and get some really good sleep for 1/2 to 1 hour, take my shower and then come back in and take the thing apart. I will admit that the hose was what I was concerned with the most and has proven the least of my problems. It doesn't really bother me.

As for the surgery, I've had plenty in my life. I retired out of the special ops a few years ago, so I've had my breaks, bruises, punctures etc etc.. But with odds like that, my throat can stay as it is...

Thanks again for all the info. I hope that somehow I can get adjusted to this. I've been wearing the thing every night for the past 4 weeks and have yet to get a good sleep. I've never been tired during the day and I've never almost fallen asleep while watching TV in the evenings. That is until this "treatment" that is supposed to be so great for getting a restful sleep. I've slept under trucks on rocks in the rain and wind in a gas mask and had better sleep than this thing. But they say it's good for me...

[JohnBFisher]

...

... I'll send a PM with a few PDF files about CSA. They are very technical medical research articles I've found. ...

That'll be great. Thanks. ...

Hmmm... No attachment capability. So, here are some of the articles I found:

Beyond Traditional PAP Therapy
http://www.internetage.ws/cpapdata/manu ... nd_pap.pdf

Central Sleep Apnea: Pathophysiology and Treatment
http://www.ncbi.nlm.nih.gov/pmc/article ... s43664.pdf

Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... 9.full.pdf

eMedicine - Central Sleep Apnea
http://emedicine.medscape.com/article/304967-overview

Ventilation is unstable during drowsiness before sleep onset
http://jap.physiology.org/cgi/reprint/99/5/2036

Central Sleep Apnea
http://chestjournal.chestpubs.org/conte ... 5.full.pdf

Pathogenesis of Obstructive and Central Sleep Apnea
http://ajrccm.atsjournals.org/cgi/reprint/172/11/1363

Central Sleep Apnea: Details
http://www.apneos.com/csa.html

Sleep disordered breathing in neurologic diseases
http://www.smw.ch/docs/pdf200x/2002/09/smw-09703.pdf

... I have had the 2i turned up all the way since the second night of using it. It's almost empty in the mornings and I've just recently turned it down to about 5 1/2. I don't get rainout and the hose is dry in the mornings. ...

Do you use a full face mask? Sorry, I don't remember. If not, you might want to consider either adding a chin strap to keep your mouth closed, or probably a better bet would be to use a full face mask. Why? Well the pressure swing would cause anyone's airway to open when you are asleep. That would both explain the dry mouth and feeling so poorly in the morning.

... But with odds like that, my throat can stay as it is ...

Yup. I heard similar stats on surgery to "fix" obstructive apnea. No thanks.

... Thanks again for all the info. I hope that somehow I can get adjusted to this. I've been wearing the thing every night for the past 4 weeks and have yet to get a good sleep. I've never been tired during the day and I've never almost fallen asleep while watching TV in the evenings. That is until this "treatment" that is supposed to be so great for getting a restful sleep. I've slept under trucks on rocks in the rain and wind in a gas mask and had better sleep than this thing. But they say it's good for me...

Yeah, but did you ever sleep with a shop vacuum blowing toward your face all night long? Let's face it. It's REALLY unnatural. However, you should find that you will sleep more soundly and more deeply than ever before.

Let's face it, people who know how to "make do" regardless of their situation can push themselves WAY beyond what most people expect. Though I've never been in special forces, my line of work can keep my up and working for days at a time. Though I know when I've not slept well, I can continue to function fairly well regardless of my sleep. My doctors often wonder why I'm complaining about sleep - until they see the sleep studies. But I also know that when I sleep poorly I lack a "crystal clarity" of concentration and thought. With it, I keep going hour after hour with no problem.

You almost certain fall into such a group. You would not have been in special forces without such personal drive. With good solid sleep it will be easier for you to do what you want. And I bet you are in decent shape. That minimizes the damage from poor sleep. So, sleep with your ASV unit won't change things dramatically. But it will will allow you heart and body to rest more fully. And as you get older, that will be more and more important. So, for you at least this is a good way to avoid spending time with a cardiologist. Untreated CSA is just as bad for you as untreated OSA. Now that you've retired if you don't address it, you might find it will catch up with you far too quickly.

At least that is how I would view it, if I were in your shoes. I hope this helps. Take a gander at the information above. There is a LOT of technical information in those articles. But I find it helps me deal with this, if I better understand the situation. Think of it as the background briefing.

So, hang in there. It does make a difference. It won't be as dramatic for you since you've maintained your health. But it will help you avoid problems and may actually help heighten your ability to continue to function well. It takes time to adjust (often several months as you've seen from other posters in the forum). But it will make a difference for you.

[timbalionguy]

Ruffinit, I hope you can adjust to your machine and get the therapy you need. Your CSA (alne without OSA) is indeed quite unusual. I wonder in reading your background if something you did or were exposed to in your 'special ops' didn't bring on your CSA.

John, thanks for openly posting those links. I was going to ask you off-list for them, but now I (or anyone else interested) does not have to!

[Muse-Inc]

Good article on sleep apnea, titled Sleep Apnea and Cardiovascular Disease:http://circ.ahajournals.org/cgi/reprint/118/10/1080.pdf. It's from Sept 2008.

And another http://advan.physiology.org/cgi/content/full/32/3/196, this one titled Using the pathophysiology of obstructive sleep apnea to teach cardiopulmonary integration. Also from 2008.

Ruffinit, both present a lot of info that you might find helpful as you seek effective treatment.

[JohnBFisher]

... Ruffinit, I hope you can adjust to your machine and get the therapy you need. Your CSA (alne without OSA) is indeed quite unusual. I wonder in reading your background if something you did or were exposed to in your 'special ops' didn't bring on your CSA. ...

Probably not. He noted:

... my wife has told me that since we were first married 30 years ago at 19 that sometimes I stop breathing during the night ...

More than likely it's just a mild neurological issue that mostly did not interfere with his life. However, as we all age many of the automatic control systems tend to go astray. As a result, as he aged the CSA would tend to become more pronounced. That's just a theory. Zip proof - except that it's the normal trend for all of us.

... John, thanks for openly posting those links. I was going to ask you off-list for them, but now I (or anyone else interested) does not have to! ...

That's part of why I did it. I'll probably also send Rested Gal a PM to have her include it the ones she wants in her list of CSA related links.