Doc Says I'm In Serious Trouble (Long Post) - Need Advice

[Bazzy]

Hi All,

Firstly, my sincere apologies for the very long post. I was diagnosed with very bad Severe Obstructive Sleep Apnea (SOSA) at around 1995 & was prescribed CPAP which I just could not tolerate so I stopped it - I really did try but it made my life hell. Over the last few years I lost a fair bit of weight - around 55lbs & noticed a really great improvement in my sleep. Others noticed that I was no longer snoring like thunder or having any apneas/gasps for air as I slept. Just for note, I had a Heart Attack In mid 2009 & now classified as having Heart Disease, am on meds for High Blood Pressure & Cholesterol and am a Type 2 Diabetic.

Although I was sleeping much better, I was still experiencing very terrible choking events when in sleep - these choking events were so bad, that I would regularly jump up from deep sleep & feel like a golfball was stuck in my throat & they would also happen during daytime. I would then have to slam my back very hard against a wall until the choking stopped & I would painfully gasp for air with a torrent of tears running from my eyes afterwards - they really were that terrible.

So, last year, I went a a ENT specialist (who was the best one I had seen so far) to investigate these choking events & my nasal issues as I have never been able to breathe through my nose. He did very thorough checks & told me that when breathing in, my airway was completely blocked - this was caused by massively enlarged tonsils & a very long, deformed Uvula (that had funny growths/nodules on it) which dangled around in the airway when it was open but when breathing in, it would get stuck in the airway between the tonsils causing a tight seal & was the cause of the terrible choking events I was still experiencing. The ENT said my Tongue Base & Palate were fine which was very comforting to hear. He advised me against Nasal surgery for the time being & to deal with one problem at a time though he did give me various medications for my nose. I had the surgery done in late 2009 to remove my tonsils & most of the Uvula and as many night know, the pain was awful! After everything was healed, I felt an absolutely MASSIVE improvement, even better than that of the weight loss - no snoring, no gasping etc as others who witnessed my sleep mentioned. I honestly slept & felt SO much better, I could breathe SO much more air with each breath which was now also much stronger. I woke up COMPLETELY refreshed & was also very mentally alert on waking which felt strange at first but really great. Also, since the surgery, I have NOT HAD A SINGLE CHOKING EVENT - at any time.

In February this year, at the request of the ENT, I had another sleep-study to confirm that I was now cured of my SOSA & Choking Events but was hit by a real bombshell - the Doc said, that my Sleep Apnea was still as bad as ever if not worse & informed me that I had around 500 Apneas during the study which ranged from between 14 secs to 2 mins in duration & said that was very bad. He also said my Oxygen (O2) levels reached dangerously low levels - reaching a peak low of 34%, a large amount of time at around 60% with an overall average of around 88%. Also, he was very concerned as my body was retaining & not expelling enough Carbon Dioxide (CO2) & other bad gases - the CO2 reading was at 9.2 when it should be at around 6 or 6.5. He told me that in addition to the Severe Sleep Apnea, I now also have something called Obesity Hypoventilation Syndrome (OHVS). Learning that I still have SOSA which is as bad or worse than before & now this CO2 issue/OHVS came as real bombshell to me - especially after losing so much weight & having the surgery which left me feeling like a brand new man. I am really not that fat or obese - I have no fat on my legs, chest or arms, but do have it around my belly - not to the level one would think as being obese enough to retain bad gases - I hide it quite well - walk down any street in the Western world & you will find a heck of a lot of people way, way bigger than me around the belly so how the hell can I have this OHVS? If people two or even three times my weight/fat levels do not get it, then why do I? I am 48 - My height is 5'11, my weight currently is 207lbs (was 188lbs from 245lbs) & my BMI is 28.9 - My current trouser waist is 36".

The Doc told me that such a high number & duration of Apnea's would place a very heavy strain on a normal heart but in my case, he was extremely worried as with my damaged Heart, High BP & Diabetes, this number of Apnea's was really hammering my heart & system. He informed me that my heart & brain were being deprived of O2 for too long and the High CO2 retention levels were making things even worse - the combination of my existing conditions & the multiple issues they found posed a major risk & that I was in very serious trouble - He said that I will definitely have another heart attack, stroke and/or die in my sleep or die prematurely - he made it clear it was not a question of 'If' but 'When'. I was also informed of a number of other nasty health issues like brain related damage/illnesses, my Diabetes getting much worse (& the problems that brings) etc that I would almost certainly develop in time as well. I just went numb & could not take most of it in tbh - like a circuit had blown, just felt a total state of loss & disbelief. He told me that he would be prescribing something called life long 'Non-Invasive Ventilation' which is not CPAP but would help bring my body gases to better levels. I was warned many times that I must not ever go to sleep without using this thing.

Two weeks ago, I went in again for more detailed tests over a period of 4 days & their findings were even worse - over this period, they told me I was having anything between 500 to 800 Apneas a night & that my CO2 levels were between 9.5 & 10. I did not sleep well during some nights as much as I had to wear a freaking mask which was awful. Again, I felt even more dejected - I thought, if I could die in my sleep at any time and/or probably have a stroke or brain damage, brain related disease or some other nasty afflictions in later life as was made out, then maybe it would be best if I just ended it all - there is no way I could handle or live with that. I really feel full of tension & deep anxiety now about sleeping in case I do not wake up the next day or wake up with a stroke.

I had lost confidence somewhat in the past at what Doctor's say due to so much conflicting views from so called medical experts & I also felt that they sometimes tell you scary things so you force yourself to comply with CPAP out of fear & so that you do not bother them again as they are so busy & usually they fob you off if you ask too many questions. I also felt angry & frustrated, that at time of diagnosis, they assure you things/procedures will more or less work & when they do not, you cannot get seemingly reasonable explanations from the very experts who made you go through all those hoops & hurdles only then to be let down after it all with just get some quick excuses or change of subject. This guy was very different - he was very considerate & patient driven - he would go through all the various numbers & charts quite thoroughly - tbh, although I am not quite trusting of Doctor's, this guy was very sincere & spent a lot of time with me conveying things to me in a sort of caring way but it was the look on his face & the tone in which he spoke that really hit home in an scary kind of way.

I asked how was it possible that I still have Sleep Apnea if the actual physical obstructions that were the very root causes of the Sleep Apnea had been clearly identified & had been surgically removed? My airway is now clear & there are no longer any physical obstructions present to cause any Apneas so why do I still have "Obstructive" Sleep Apnea & how was this anatomically possible? I lost a fair bit of weight, I am sleeping & breathing so much better, I have none of the various symptoms that SOSA usually brings when one wakes up & during the day & also, I have not had one single choking event since the surgery. He said that there could be a number of other causes & felt it best that the ENT dealt with such issues as he was a Respiratory Specialist. Can anyone here please explain why? I really find that most baffling & upsetting.

I was able to get a copy of the February 2011 Sleep-Study and have posted it below for some of the experts & knowledgable folks here who might know in detail what all the numbers & charts/graphs mean & how to interpret them - would it be possible for some of you to kindly have a look & tell me if it is really that bad? I could not get the data for the recent 4 days sleep evaluation as the nurse needed the Consultant's authority & he was not there at the time of my leaving. I am very scared, I hate CPAP with a passion as I just have so many issues with it & having to use this thing for life with what I have been told is really, really is depressing.

I would also like to know, if any of what this Doc said might be to maybe force/motivate me to use the machine or was he being mostly accurate/truthful? I ask, as in the UK, it is not easy to get to see these specialists easily & one has to wait months & usually much longer with the NHS - even then, there is no guarantee that I will see the same doctor - it could be anyone who sees me next time & depending on how busy they are, one can easily get fobbed off or be sent round in circles so I am seeking, help, advice & guidance from here - I hope you all understand. Are things as bad as this Doctor has made out or am I just being over-reactive? This was the very best Doctor I have had seen me so far & I feel ironically, that he has given me the worst news & I was hoping for the very opposite. I am having lots of issues dealing with this so I'm sorry if I sound pathetic but this time, I am scared s**tless.

Also & very unusually, I was visited by a high number of staff from various department's including some management types - I had to go through bunch of paperwork & sign them stating I understood all the stuff told to me, was informed fully of my conditions, how to use & commit to using the device/having it serviced & other stuff like the hospital made every effort, that I could not hold them liable if something happened & other legal type stuff etc. This has never ever happened to me while in Hospital or during previous sleep studies & got me really messed up.

Finally, I have not been prescribed CPAP but something called 'VPAP'? I have never heard of it before & it is not commonly ever referred to on forums or on most sleep apnea articles, resources or treatment options - what is VPAP & how does it differ from CPAP? I have been given a Resmed VPAP III ST-A unit (is it good or crap?) with a Mirage Quattro Mask (freaking hate it - tried others but this one seemed best at the time) & a separate crappy 'el cheapo water container. The pressures are set to:

IPAP = 20, EPAP = 06, BPM = 15, Ti = 0.9 Sec, Bloods WCC = 10.8, CRP = 2.

They were set higher when they were setting it up but it was very uncomfortable so I insisted for them to bring them down & these are the lowest they would go. I still don't feel like I am getting as much breath in as normal but anymore and it is too uncomfortable.

I am having a very rough time & lots of issues with this VPAP stuff but will leave that for another time - I will tell you this though, I now have all the horrible issues I had with CPAP before with this VPAP - I find it very difficult to get any sleep & wake up feeling like absolute crap - without it, I sleep like a baby & wake up feeling great - how is that possible if it is supposed to make me so much better? Once again, my apologies for the very long post but I wanted to provide as much detail as possible - apologies to anyone in advance who may have taken any offence in any way.

Below are the results of my Feb 2011 Sleep Study

Peace & Thanks To All,

Bazzy.

[Breathe Jimbo]

You don't really have a choice. You must learn to live with the machine and mask. Try different masks. Maybe get some medication for anxiety/agitation.

It might be helpful if you try to get used to the machine and mask during the day. One thing that is often recommended is to use the machine and mask while watching TV. If you can learn to tolerate it during the day, it may be easier at night.

I am one of the lucky ones who took to CPAP like a duck to water. Others who have had more problems will be along soon and can make helpful recommendations to deal with specific problems. I wish I could be more helpful. Don't give up!

ResMed makes very good machines.

[BlackSpinner]

First of all - welcome to the board. I can't help you with the charts but, Weight and tonsils are not the only thing that causes OSA, the whole structure of your throat can be involved. I had very little extra weight on me and my tonsils were removed too many years ago to count when I first started showing symptoms.

The fact that you are not noticing your symptoms like sleepiness doesn't mean you don't have OSA. It affects things like blood pressure first of all.

One thing I did notice on your chart is that you have fewer apneas when you are not supine so I would make very very sure not to sleep on your back until you can get your machine.

A VPAP is a more sophisticated version of CPAP. I would assume you need something better then a simple CPAP machine at this point.

The way to make your therapy works best is to make sure you get a mask that is comfortable and well fitting - put as much effort in fitting your mask as you would buying running shoes for a marathon! At this point your life depends on you wearing this mask so use appropriate methods to make sure it works.

[scrapper]

I did skim through your long post, and will say this: your numbers are the highest or the worst I've ever seen! Without a doubt, you must do something as soon as possible.

I too am on vpap and I love it.........I will re-read your post tonight and see what else I can offer, but I would encourage you to immediately start researching the forum for ideas on making the vpap work for you by using the Search engine above. Also go through the four categories above in the success stories, adapting to cpap, etc and look for positive things that you can implement immediately.

Your numbers indicate that you need to respond and not worry about the exact accuracy or other opinions at this time...........welcome to the forum--you've come to the right place.....only if YOU want to make a change. I hope you will........it's been one of the best things that's happened to me.

[Mr Bill]

Hello and welcome to the forum, I am a newbie and use a different machine but I will try to answer a few questions.

(1)Even though you breath better during the day because of this operation, one can still have problems breathing at night. The muscles in the airway are supposed to keep some tone and keep the airway clear while sleeping but in many people, these muscles loose tone and let the soft pallet collapse into the airway when you are asleep.

(2)You say you have a Resmed VPAP III ST-A. This means it has an EPAP (exhalation positive airway pressure) that is lower to make it easier to exhale and an IPAP (inhalation positive airway pressure) that is higher to make it easier to inhale. Your prescription will typically have a minimum EPAP which is set so that the airway is clear, maintained by the pressure. Your min EPAP at 6 is fairly low so you are lucky in that respect. Also, this looks like its a data capable machine. This is good because it means you will be able to look at the results of small changes you make and see if they have had a positive or negative effect on your sleep.

(3)You absolutely need this therapy judging from your data, now its a matter of reaching an accommodation with your machine. Others that have this same machine will have suggestions.

(4)Be sure to go into your forum settings and enter your exact equipment list so its easier for responders to see what you have. I personally think the text is better than the icons.

(5)Finally, as far as sleeping. Try varying the humidity up and down. Some people like it really high, others like me find that high humidity makes you choke and run with the lowest possible setting. Mask comfort and seal is the big hurdle. Hopefully others will chime in with suggestions.

[archangle]

I think the doctor's right. It sounds like you really need CPAP/VPAP, sorry. Unless they've faked the results, there's objective data that says you need it, not just some screwball doctor's opinion.

You probably need to work with the doctor rather than adjusting things like pressure yourself.

There might be some adjustments that could be made in terms of making it more comfortable. Different mask, pressure, ramp, etc. Different sleeping position, sleeping in a recliner, eating/not eating before bed, caffeine, booze, naps, etc.

Hopefully, it will get better over time.

As to why you don't feel refreshed when you wake up, it's probable that the VPAP is keeping you from sleeping well and you're simply not getting enough sleep. It should still be keeping you from getting low oxygen levels during the night, but your brain just isn't going into the right sleep mode right now. Low oxygen levels can do damage to the heart and other parts of the body, even if you don't notice the symptoms in the morning.

Maybe you can use the CPAP during the day when reading, watching TV, etc. just to get your body and mind used to it.

Does your machine have a "ramp" function? That starts it out in a more gentle mode and pumps up as needed. It might help you get used to the machine.

Some of your problems are probably the fear and anticipation of using the machine. Try not to stress out about it. (Yeah, I know, easy for me to say.)

Be sure to talk to the doctor about doing something before you simply give up and chuck it all into the bin. Maybe he can even give you some sleep or anxiety meds to help you get adjusted.

I wish I had a glib solution, but it sounds like you really do have a serious medical problem that needs PAP treatment.

By the way, we're a skeptical group here and many of us are suspicious of the medical profession in general. We're not usually the "listen to your doctor, he knows what he's doing" group. In this case, you should listen to your doctor, it sounds like he knows what he's doing. That doesn't mean you shouldn't educate your self and figure out what's going on while listening to the doctor and participating in your treatment.

[rested gal]

Bazzy, you wrote a wonderful introductory post. You described everything very well and you included the name of the machine you've been given -- ResMed VPAP III ST-A (yes, that's a good machine) and the name of your mask (ResMed Quattro full face mask.) Best of all, you posted the complete charts from your sleep study nights.

While the VPAP ST-A is a good, somewhat specialized kind of machine, there may be...I stress "may" be ... a different type of very specialized machine that might (I stress "might") be better for your particular type of sleep disordered breathing. Either an ASV or AVAPS type of machine, but I am not "expert" enough to know if one of those could handle your breathing problems better, or not.

With a little luck, two message board members nicknamed -SWS and "Muffy"/"NotMuffy" will see your topic here and will think about the problem you have, and what machine might best treat it.

The doctor who talked to you about the seriousness of your sleep disordered breathing was not exaggerating.

You have been very fortunate to have two good doctors so far.

The ENT who worked on your tonsils and uvula, and who had the good sense to really examine your soft palate and not automatically start carving out the soft palate was unusually good. Just because his work didn't completely "cure" OSA for you doesn't mean he didn't do some things that absolutely needed doing. He did clear up the choking problem.

And the doctor you have seen most recently is right about the critical seriousness of what is continuing to happen to you... the airway blockages...the apneas. You apparently have an "airway collapses" problem all the way up and down. That may be why removing the tonsils and trimming the uvula "helped" but didn't take care of every collapsing area farther back or a little farther down. Could be that you have an usually narrow airway, ready to slam shut when its totally relaxed during sleep. Or could be the back of the tongue creating a problem. Can be multiple things.

If there's any way to stay off your back when you sleep, that might help "some." Won't be a cure for you, but will help a little. Try to sleep on your sides as much as possible, or with upper body reclining upward, like halfway sitting up against pillows or a wedge, or by putting some blocks under the feet of the head of the bed to incline the head of bed higher than the foot.

Do keep using the machine and mask. Staying off your back during sleep, and/or reclining upward can help only so much. You definitely, definitely need to use the machine (or..possibly a different type of machine.)

The mask can be the most difficult piece of the "cpap" puzzle to get right. By "right", I mean finding a mask that's comfortable enough to allow a person to actually "sleep" and that doesn't leak unduly.

Please describe all the issues you're having with your Mirage Quattro Full Face mask. There might be some easy fixes to make the mask more comfortable, if you'll describe the "worst" things you don't like about it.

And...what is the name of the separate humidifier they gave you? Is it a heated humidifier with a heat adjustment knob, or is it just a cold water (passive) humidifier?

You've come to the right place for help. This can all get better for you, Bazzy.

I'm still impressed, though, with the two doctors you've had.
You may not feel lucky right now, but you were...and still are, now that you've found your way here.

I'm going to send you a PM, so check your Private Messages (upper left of page, beside the words: "User Control Panel.")

[BleepingBeauty]

Hi All,

Firstly, my sincere apologies for the very long post.

Hi, Bazzy, and welcome to the forum. No worries about the length of your post - more information from a newbie here is always a good thing.

I'm sorry you're so freaked out by your diagnosis. We all understand that, believe me. It's scary to be told you have a serious condition. But take solace in the fact that it CAN be managed and treated effectively, even if that process takes awhile to come to fruition.

IMO, attitude (a positive one) is the most important factor in making the treatment work for you. You don't have to love using a machine, but you DO have to have a "must do/will do" approach to the therapy to be successful. More than 50% of new CPAP patients give up and throw the machine in a closet; I firmly believe that's because they don't get the support and information they need from their medical professionals, and it becomes too difficult to stick with it when you can't fix whatever problem(s) you're having. But you can get all the support you need right here, so you're ahead of that game.

Second most important thing, IMO, is a mask that fits well, keeps leaks to a minimum, and doesn't hurt. Nobody gets good therapy if their mask doesn't suit them in all of those ways. There are many different masks on the market, so if the one you have isn't working for you, try another. Our host (https://www.cpap.com) is an online retailer of xPAP equipment, and their prices are reasonable. There are other options, too, if you can't afford to buy a number of different masks to see what works best for you. Masks are a VERY individual thing - what works for 95% of people may not work for you at all. Other options for buying masks: http://www.cpapauction.com (like ebay for xPAP equipment) or sites like CraigsList (buyer beware there, of course). There's even a member of the forum here (sleepnationtv, I believe) who offers mask try-outs.

It sounds like the doctor you just saw is a great one. I know he scared the hell out of you, but it seems he was very thorough and insistent on you adapting to xPAP therapy to mitigate the damage being done while you sleep. As to why you still have OSA after surgery, that's not uncommon. Many people here have had similar surgeries and still need to use a machine to treat their OSA. It's unfortunate that there's no easy cure for this condition, but it's definitely possible to treat it effectively. (And believe it or not, if you stick with it and iron out the problems you're having, you'll likely come to LOVE your machine.)

The events you experienced during your recent sleep study are pretty serious. Very long apneas (during which your brain and other organs are being deprived of oxygen); your longest event lasted 114 seconds - that's nearly two minutes of no breathing. You NEED this therapy to regain as much of your health as possible. I'm not very familiar with the machine you've been given, but it's a good one, and it CAN effectively treat you. Use it whenever you sleep - even for a quick nap. One thing you can do immediately to lessen your events is prevent yourself from sleeping on your back. Your study results indicate that you have many more apneas while sleeping supine, so if you can keep yourself off your back, you'll be better off. Try laying on your side with pillows or a rolled-up blanket wedged behind you to keep you from rolling over. Some people sew a tennis ball into the back of their pajamas to keep them off their back. (Apnea is worse for most people when sleeping supine, so you're not alone.)

One good thing I see on your sleep study report is no Central Apnea events recorded. (Centrals happen when the airway is open and you're physically ABLE to breathe, but you don't make the effort to do so. It's a disconnect between the brain and the respiratory system.) I'm one of the "lucky" ones who has both severe OSA and Central Apnea. The machine I use (called an ASV - Adaptive Servo Ventilation) treats both conditions very effectively.

Your thoughts about suicide are understandable (I think every person on the face of the earth has considered that at one point or another), but that's not a solution. Your sleep disorder IS treatable, and you CAN have a normal life again. For some of us (a lucky few), the positive results are seen and felt quickly; for most, it's a gradual improvement that can take weeks or months. Just keep working at it, and you'll get there. Try not to think about this treatment as a "rest of my life" proposition. In most cases, it IS just that; but consider looking at it as "one night at a time," which isn't so daunting.

There are other members here who can speak to you about the machine you have (and the settings prescribed). For many of us, it takes some tweaking of our pressure (and other) settings to get to optimal therapy. A sleep study is a one-night snapshot of your therapy needs; many of us only find effective treatment by reading the data from our machines and making thoughtfully-considered and small adjustments to the settings.

My hope is just to offer you encouragement right now. We all know how hard adapting to this new lifestyle can be, but trust me when I say it's worth all the struggles you have to go through to get to the point of effective treatment. Anything's better than feeling like a zombie all day every day, but you, Bazzy, have even more important reasons to make this work for you, with your other health conditions.

There's lots of support and information to be found on this forum. It's a VERY caring group of people, and we'll help you all we can. Hang in there, and do your best to follow the advice you're given here. If you make the effort needed to solve whatever problems you're having with xPAP therapy, you'll soon be on the road to recovery.

[JohnBFisher]

Greetings Bazzy! Let me welcome you to forum. I am sorry that you have to be here, but you will find lots of helpful folks who will try to help you on your journey. Many of us have been on similar paths, so we try to help others on their way.

First, a couple thoughts ... The ENT gets paid for surgery, not for treatment of OSA. Thus, they will do the surgery to "remove the obstruction". Unfortunately, your case just reiterates that surgery for OSA is rarely successful. I know others who can no longer use xPAP devices due to the surgeries.

Second, cardiovascular problems are related to both OSA and Type 2 Diabetes. After a heart attack that my father-in-law had, he noted that most of the patients in the heart ward had Diabetes. There is a tight correlation between Diabetes and heart issues. There is also a tendency for folks with OSA to develop Type 2 Diabetes (especially if it runs in your family).

So, let me tackle your post ...

... Although I was sleeping much better, I was still experiencing very terrible choking events when in sleep - these choking events were so bad, that I would regularly jump up from deep sleep & feel like a golfball was stuck in my throat & they would also happen during daytime. I would then have to slam my back very hard against a wall until the choking stopped & I would painfully gasp for air with a torrent of tears running from my eyes afterwards - they really were that terrible. ...

These are classic symptoms of obstructive apnea. It is usually not that severe for most folks, but often happens.

... So, last year, I went a a ENT specialist ... I honestly slept & felt SO much better, I could breathe SO much more air with each breath which was now also much stronger. I woke up COMPLETELY refreshed & was also very mentally alert on waking which felt strange at first but really great. Also, since the surgery, I have NOT HAD A SINGLE CHOKING EVENT - at any time. ...

Unfortunately, going from really, really bad to just very bad does not make it that much better for your body.

... He also said my Oxygen (O2) levels reached dangerously low levels - reaching a peak low of 34%, a large amount of time at around 60% with an overall average of around 88%. Also, he was very concerned as my body was retaining & not expelling enough Carbon Dioxide (CO2) ...

Below 87% (if it can not otherwise be raised, you should have O2 added. If xPAP (CPAP, BiPAP and the like) can not address it, then O2 should be added. Normally, supplemental O2 is not needed, since a clear airway eliminates the obstructions and allows proper ventilation.

... I now also have something called Obesity Hypoventilation Syndrome (OHVS). Learning that I still have SOSA which is as bad or worse than before & now this CO2 issue/OHVS came as real bombshell to me - especially after losing so much weight & having the surgery which left me feeling like a brand new man. I am really not that fat or obese - I have no fat on my legs, chest or arms, but do have it around my belly - not to the level one would think as being obese enough to retain bad gases - I hide it quite well - walk down any street in the Western world & you will find a heck of a lot of people way, way bigger than me around the belly so how the hell can I have this OHVS? If people two or even three times my weight/fat levels do not get it, then why do I? I am 48 - My height is 5'11, my weight currently is 207lbs (was 188lbs from 245lbs) & my BMI is 28.9 - My current trouser waist is 36". ...

Good for you that you've lost the weight and done other things (the surgery) to address your breathing problems. Unfortunately, loosing weight and widening the airway does not always eliminate the obstructive sleep apnea. Often it is the soft palette that collapses down into the airway that causes the obstruction. Sometimes surgeons attempt to stiffen (with little success and a LOT of pain) the soft palette to help reduce the obstruction.

... The Doc told me that such a high number & duration of Apnea's would place a very heavy strain on a normal heart but in my case, he was extremely worried as with my damaged Heart, High BP & Diabetes, this number of Apnea's was really hammering my heart & system. He informed me that my heart & brain were being deprived of O2 for too long and the High CO2 retention levels were making things even worse - the combination of my existing conditions & the multiple issues they found posed a major risk & that I was in very serious trouble ...

Please listen to him on this. He's not just trying to "blow smoke" here. It's a very real problem that you need to address. If you do not, it is extremely likely that you will die much younger than you otherwise would.

... I did not sleep well during some nights as much as I had to wear a freaking mask which was awful. Again, I felt even more dejected - I thought, if I could die in my sleep at any time and/or probably have a stroke or brain damage, brain related disease or some other nasty afflictions in later life as was made out, then maybe it would be best if I just ended it all - there is no way I could handle or live with that. I really feel full of tension & deep anxiety now about sleeping in case I do not wake up the next day or wake up with a stroke. ...

Hmmm... Seems as if you are in the early stages of grief. Denial, Rejection, Pleading ... I wish I could tell you that I do not understand. But as I've said many of us have been there before. You will get past it. You can learn to live with most anything. And in this case, you need to learn to live with it. If you decide you can not, you will only be accepting the ongoing damage to your body. Not a good choice.

... I also felt that they sometimes tell you scary things so you force yourself to comply with CPAP out of fear & so that you do not bother them again as they are so busy & usually they fob you off if you ask too many questions. ...

In this case, you are getting the VERY straight scoop. If you ignore their warnings, you WILL pay the ultimate price.

... I also felt angry & frustrated, that at time of diagnosis, they assure you things/procedures will more or less work & when they do not ...

As I noted, ENTs get paid for surgery, not for treatment of OSA. Now, understand, you would probably need even higher pressure if you had not had your airway issues addressed. It's just that did not "fix" the problem. It sounds as if it went from VERY, VERY bad to just really bad. But it's still bad.

... This guy was very different - he was very considerate & patient driven - he would go through all the various numbers & charts quite thoroughly - tbh, although I am not quite trusting of Doctor's, this guy was very sincere & spent a lot of time with me conveying things to me in a sort of caring way but it was the look on his face & the tone in which he spoke that really hit home in an scary kind of way. ...

Sounds as if he is a "keeper". I prefer a straight shooter, even if the message is hard to take. And trust me, I've had some tough talks with my neurologist.

... I asked how was it possible that I still have Sleep Apnea if the actual physical obstructions that were the very root causes of the Sleep Apnea had been clearly identified & had been surgically removed? ... Can anyone here please explain why? I really find that most baffling & upsetting. ...

As I noted, there are several things that make cause the obstruction. An enlarged uvula and tonsils is just one part of the picture. The soft palette collapsing into the airway, the tongue falling back into the airway. All of these things lead to poor breathing at night. The CPAP type device helps splint open the complete airway.

... I was able to get a copy of the February 2011 Sleep-Study and have posted it below for some of the experts & knowledgable folks here who might know in detail what all the numbers & charts/graphs mean & how to interpret them - would it be possible for some of you to kindly have a look & tell me if it is really that bad? ...

Yes. It is REALLY that bad. Thanks for posting it, because I can provide some positive feedback. You do not have central sleep apneas (which can often occur if you have heart problems). So, you are in a much better position than you could be.

Sure, you will need to use a VPAP. But you can learn to adjust to it.

As a note, Resmed calls their BiLevel Positive Airway Pressure (BiPAP) devices a VPAP (V for variable). Respironics trademarked their BiLevel Positive Airway Pressure devices with the BiPAP name. If you needed one constant pressure, then you would use a CPAP (Continuous Positive Airway Pressure) device. If you had a unit that automatically adjusted the CPAP, then it would be called an APAP device. And there are automatically titrating BiPAP devices as well. In general we just refer to the lot of the devices as xPAP devices.

... I would also like to know, if any of what this Doc said might be to maybe force/motivate me to use the machine or was he being mostly accurate/truthful? ...

Nope. It sounds spot on.

... Are things as bad as this Doctor has made out or am I just being over-reactive? ...

You are getting the straight scoop. You really, really need to heed his advice. He has nothing to loose either way. He is paid to help you sleep well and be healthy. He is not paid for surgery. He (almost certainly) has no vested interest in the testing and/or equipment setup (as we sometimes see here in the US). He is trying to pass along his training and experience with other patients to help you avoid catastrophic results.

... what is VPAP & how does it differ from CPAP? ...

See my note above.

... I have been given a Resmed VPAP III ST-A unit (is it good or crap?) with a Mirage Quattro Mask (freaking hate it - tried others but this one seemed best at the time) & a separate crappy 'el cheapo water container. ...

That is a very reliable unit, from what I've observed here on the forum. I use another type of Resmed device, so can say I am very pleased with the quality of their equipment.

I also have a love / hate relationship with my Quattro mask. I dislike having to strap on a mask. But it is the best of the full face masks. At your pressures, a nasal mask is not an option. You would leak air through your mouth like a sieve if you used a nasal mask. (I also have to use a full face mask for that reason).

... The pressures are set to:

IPAP = 20, EPAP = 06, BPM = 15, Ti = 0.9 Sec, Bloods WCC = 10.8, CRP = 2.

They were set higher when they were setting it up but it was very uncomfortable so I insisted for them to bring them down & these are the lowest they would go. I still don't feel like I am getting as much breath in as normal but anymore and it is too uncomfortable. ...

Believe it or not, you will adjust to the pressure. I am no longer comfortable going to sleep without my mask/machine.

... I am having a very rough time & lots of issues with this VPAP stuff but will leave that for another time - I will tell you this though, I now have all the horrible issues I had with CPAP before with this VPAP - I find it very difficult to get any sleep & wake up feeling like absolute crap - without it, I sleep like a baby & wake up feeling great - how is that possible if it is supposed to make me so much better? ...

Ah, what you need to remember is that what you feel like when you sleep is that to which your body is acclimated. But it does not mean that you are doing well. Those SaO2 charts you listed a HORRIBLE. If you do not use your VPAP, you WILL die from the strain that places onto your heart. As your doctor notes, it is not a matter of "IF", but "WHEN". I am 99% certain that my grandfather had OSA. It was not diagnosed in those days (in the 1960s). But I am certain he had it. He died of a heart attack during his sleep. He was only a few years older than me (about 62). He died fairly young. The same will happen to you if you do not heed your doctors advice.

... my apologies for the very long post but I wanted to provide as much detail as possible ...

No need to apologize. It is better to post the detail. I sure hope my post and those of others helps. I am not trying to be doom and gloomy. As you can tell, we've all had similar adventures. We try to help one another to avoid problems and improve our quality of life.

Best wishes!

[robysue]

Bazzy,

Welcome to the forum.

As others have said, your diagnostic numbers are very, very bad: Among the worst I've seen posted here.

So you really owe it to yourself and your loved ones to make the VPAP III ST-A work for you. You write:

am having a very rough time & lots of issues with this VPAP stuff but will leave that for another time - I will tell you this though, I now have all the horrible issues I had with CPAP before with this VPAP - I find it very difficult to get any sleep & wake up feeling like absolute crap - without it, I sleep like a baby & wake up feeling great - how is that possible if it is supposed to make me so much better? Once again, my apologies for the very long post but I wanted to provide as much detail as possible - apologies to anyone in advance who may have taken any offence in any way.

There are a great many of us here who have had real difficulties in learning to sleep with a hose on our nose. I'm one of them: I've been at it now for almost seven months---I started therapy on September 23. The first four months I felt exactly the way you describe how you feel. At the end of three months of therapy I was finally able to admit that the insomnia I was experiencing due to my extended and difficult xPAP adjustment was just not going to go away on its own and that it was now feeding on many non-xPAP issues. And so on Dec. 30 I started working with a PA to tackle taming the insomnia primarily through behavior modification and a (temporary) sleep restricted schedule. Now that I'm seven months into xPAP therapy and four months into serious work on the insomnia, I am finally able to say that on many nights (not all of them), I'm finally sleeping as well with xPAP as I was without xPAP last summer. And on some nights, I am genuinely beginning to sleep better in a subjective sense as well as in a data sense.

And what does it really take to get through a more difficult than usual xPAP adjustment period? Here are some of the most critical factors in my opinion as a person who's had a more difficult than usual adjustment period.

Stubbornness and persistence for starters. I was simply unwilling to give in to my baser instincts and just give up. I was largely asymptomatic---particularly in terms of daytime symptoms. But cardiac problems, strokes, and type II diabetes run in the family medical history on both sides of my family. And I would prefer to delay getting them as long as I can. You've already developed some serious medical issues---keep reminding yourself that the cardiac stuff---all of it---will continue to get worse the longer you don't properly treat your OSA.

Clear communication about your specific adjustment difficulties with the medical personnel responsible for your care. My sleep doctor is not the most sensitive or attentive guy in the world. He's basically ignored my as soon as he delivered the news that I had moderate apnea and needed a CPAP. My first follow up appointment turned out to be with one of his PAs. The PA, however, has turned out to be a marvelous medical person. She has patiently listened to my all too numerous complaints about the difficulties of adjusting to CPAP. She has consistently made quality recommendations of things to try. And she has consistently treated me as a human being with a (somewhat sleep deprived) brain who is entitled to have some real knowledge about my own therapy and some control of my own therapy. Without her help and concern, I would have given up long ago.

Tackling the insomnia issues instead of ignoring them. If you are not sleeping well with the VPAP because of insomnia, then every bit of good the VPAP does for you (the increase O2 levels, the lack of OSA arousals, the expected overall energy level), the insomnia will suck right back out of you. Indeed, it could be that part of why you are feeling so lousy when sleeping with the CPAP is that insomnia all by itself can be pretty debilitating. I only started to make real progress towards feeling like my old, normal (pre-CPAP) self after beginning to get the insomnia tamed through the substantial help from my PA. As the insomnia is increasingly under control, the BiPAP has become much easier to tolerate and I am beginning to notice some subtle, but real signs of the BiPAP doing my body good at night.

A willingness to ask for help and carefully listening to all the advice given. Obviously asking here for help conquering the various issues you run into is an excellent idea. You'll get feedback---some of it will strike you as great and some as less than great, but all of it sincere. Read and consider all the suggestions---even the ones you initially reject as not feasible. Because if none of the more reasonable ideas work, it may well be worth trying one of the "less than great" ideas. But also make sure you report any serious CPAP adjustment problems to the doctor's office that is supposed to be following your treatment. Aerophagia problems and insomnia problems both warrant mentioning to the medical staff charged with your care in my opinion---multiple times if need be.

You also asked about the VPAP III ST-A that was prescribed for you. The VPAPs are Resmed's bi-level xPAP machines. As someone has already explained, the IPAP and EPAP are the pressures the machine supplies for your inhales and exhales respectively. You gave your prescribed settings as:

.. The pressures are set to:

IPAP = 20, EPAP = 06, BPM = 15, Ti = 0.9 Sec, Bloods WCC = 10.8, CRP = 2.

The BPM is breaths per minute---so the doctor has recommended that the VPAP be used in so-called "Timed mode"---in other words, if you don't start inhaling soon enough, the machine will increase pressure in an effort to get you to breathe in---or at least that's my patient level understanding of the T mode. I believe the Ti setting is tied to how quickly the pressure goes from EPAP to IPAP when you start to inhale. Since your IPAP-EPAP gap is really large, that might have something to do with the longish Ti time. I have no idea at all what the other two settings are for.

The mask issue is critical to make this work---and you have to find a way to make it work. The Mirage Quattro Mask they provided you with is a so-called Full Face mask---usually designed for those who mouth breathe extensively at night, although some people simply prefer them. If you are not a mouth breather, then you really should investigate the full range of mask types to see if there's one that is easier for you to tolerate.

Best of luck

[avi123]

Hi, as I understand it the above numbers in the tables are without using a CPAP. If I am correct then the apnea numbers are, imo, not unusual. I had similar AHIs before being titrated at the sleep study clinic. It's a different story about the Pco2 and the Oxygen desaturations.

IMO, you should;

1) Get on CPAP asap (I am not sure about an VPAP), and also treat the blood gases.
2) Treat your type 2 Diabetes
3) Treat your hi blood pressure
4) Stay or reduce your BMI of 28.9
5) Exercise

You'll be fine. There are posters in this forum who are in much worse situations than you.

p.s. stay away from ENTs. There are super pneumatologists MDs over there.

[scrapper]

Bazzy..........

Please, please get some help........

I've been around a lot longer than avi123, and I've never seen worse numbers here--including the ones from avi's sleep study which he's posted many, many times over. I don't know what he's talking about. The evidence is here within the forum--but doesn't matter to your individual situation.

Your case is complex. Your health is in danger. You need to work with your doctors, and educate yourself to be your own advocate for the best possible healthcare.

Your number of apneas, the lack of oxygen, and the high carbon dioxide all set you up for a very major cardiac or circulatory event--that if it doesn't kill you, you will wish it did.

Several poster's have given you things to start with and try....so even if you don't learn to love your machine, at least you'll tolerate it......... It's a place to start, and we'll all help you every step of the way as you can see by the many replies you've already rec'd. Please keep in touch!

[geoffc]

Bazzy,

Welcome to the Forum!!!

My story is a little different, as I was having Central Apneas, but my AHI was 140 (140 times per hour times a 6 hours sleep study is 840) So I know how scary those big numbers are.

My O2 sats did not get as low as yours, but this all came to my attention after I spent an afternoon a year ago in the ER trying to figure out if I had a Heart Attack. I was taking 3 BP Meds at the highest recommended dose with little effect (It was still running 145/100), I'm developing Type II diabetes (Current Diagnosis is Insulin Resistance).

Long Story short, I was prescribed an Resmed VPAP ASV, which my RT told me is basically a ventilator that I need to sleep with for the resp of my life, and I'm 10 years younger than you.

I Dilly Dallied for 3 months getting my sleep studies and follow up and didn't get my machine until July. I too originally had a Mirage Quatro, but the feelings of claustrophobia, this big bulky piece of plastic strapped to my face, straps around my head were unbearable. I was ready to give up after 2 weeks of fighting with the damn thing.

My wife encouraged me to call my RT and see what could be done. I waited until my 30 day follow up with the doc and then spent the next 6 hours with my RT, trying masks, calling Resmed, Respironics and Fysher and Pykel(SP!) to get advice and finally took home a Resmed Mirage Micro that I could tolerate(barely) in the lab and made the commitment to beat this freaking machine.

Well, It's been 1 year 1 week and 3 days since I spent the afternoon wondering if I was dying laying in the ER with the nurses and doctors hovering over me muttering 'Chest Pain Protocol'.

I BEAT THE FREAKING MACHINE.

I now find relief in the machine, The power went out about a month ago for a few hours in the middle of the night, and I spent that time hoping for the power to come on.

My AHI runs between 5-10 most nights. Most people here will tell you that it's still way to high, but the results are amazing! My blood pressure now runs 105/65, I'm taking 2 meds and half the recommended minimum dose. I've slowed my progression towards diabetes and take 30% less meds there too.

Keep fighting and you can do this.

Geoff

[DoriC]

http://maskarrayed.wordpress.com/taming ... e-quattro/

This is a blog written by our forum member Janknitz which might help with your mask problems. There are also lots of other tips about the Quattro here. I know you're overwhelmed right now but I wish you well and very glad you've found cpaptalk.

[ariana]

Hi and welcome to the forum. As you can tell, there is a lot of help available here. I just want to put in a plug for one of my heroes, Dr. Barry Krakow, who is himself a user of a Resmed ASV device. Here is a link to some of his work

http://sleeptreatment.com/about-america ... kows-sleep

to put on the "back burner" in case you want professional help getting used to a machine. I haven't called on him for a consult, but do use his book as a reference. Very helpful.

Good luck. You are not alone, and who knows, in the long run you may end up helping others in the same boat.