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Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 6:51 pm
by jbt1125
I am 40 yrs old, 5'11, 205. Not sure what that makes my BMI, but I consider myself about 25 lbs overweight right now, the most so I have ever been. I know that I need to get off my butt and start running again and eating right. Lots of excuses - little kids, work, etc.
My wake up call came recently after my wife commented on how much and how loud I snore. It's not really new, just has gotten worse. Sure, I need coffee in the morning and late afternoon, but have never felt overly tired, falling asleep at work, falling asleep driving, etc. Have never gone through any of that. My blood pressure reads normal, at least during the day. Normal EKG and recent check-up, etc.
Had a sleep study done. AHI is 29. The doctor has prescribed another sleep study titration with CPAP. Here are my questions -
1) assuming this has been going on for awhile, at my age of 40, am I at risk for already having done damage to my cardiovascular system? Or does it take longer? I am wondering whether I should see a cardiologist for a full checkup, whether damage could have already been done?
2) While I realize that the AHI 29 is high, are there any other options rather than jumping straight to CPAP? I know it works. But I also read that it can be a very uncomfortable and long journey to find the right pressure, mask, deal with side effects, etc. For example, what if I got crazy serious about exercise and diet with the goal of losing 20-25 lbs over the next 6 months. Could that eliminate the sleep apnea or greatly reduce it? Combine that with special shirts/pillows to be on my side, etc.? In other words, with my AHI index, is it just a straight to the CPAP situation or could other things be tried first? If over 90 days for instance, I didnt lose the weight and show better AHI on a retest, then go to CPAP?
3) Are there any potential significant side effects from the CPAP machine? Not talking about uncomfortable masks or dry lips. I mean more serious stuff. I thought that I read that CPAP can acutally CAUSE central apneas, dependence on the machine, air bubbles in the skull, ear pressure issues, etc. I tend to have ear issues - eustachian tube dysfunction, benign positional vertigo, etc. Should I expect side effects from the CPAP to my ears?
I am trying to get in to see the ENT to ask these questions first hand. So far all my info has come through his nurse. So in the meantime, just wondering if this community has answers/feedback. I am freaking out a little right now about the diagnosis. THANKS!
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 6:58 pm
by ChicagoGranny
Combine that with special shirts/pillows to be on my side, etc.?
Get a summary of the sleep study and look at your non-supine sleep - how many minutes in each sleep stage and AHI. That
might give you an indication of whether avoiding backsleeping would treat you successfully.
Losing weight is something you need to commit yourself to do, but 40% of people with sleep apnea are slim.
Eventually I expect you will need to educate yourself and make a strong commitment to treating yourself with CPAP. It's what keeps me alive and healthy and that outweighs some inconveniences.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:21 pm
by caffeinatedcfo
JBT -
We're similar case studies, except my AHI was 45.5.
jbt1125 wrote:1) assuming this has been going on for awhile, at my age of 40, am I at risk for already having done damage to my cardiovascular system? Or does it take longer? I am wondering whether I should see a cardiologist for a full checkup, whether damage could have already been done?
Chances are you are fine. Start trying to incorporate 1/2 of exercise into your daily routine. Don't worry about throwing steel around a gym. Simply going for a light walk after dinner (or lunchtime at work) is enough to get you started. It's also a great way to get some quality family time.
jbt1125 wrote:2) While I realize that the AHI 29 is high, are there any other options rather than jumping straight to CPAP? I know it works. But I also read that it can be a very uncomfortable and long journey to find the right pressure, mask, deal with side effects, etc. For example, what if I got crazy serious about exercise and diet with the goal of losing 20-25 lbs over the next 6 months. Could that eliminate the sleep apnea or greatly reduce it? Combine that with special shirts/pillows to be on my side, etc.? In other words, with my AHI index, is it just a straight to the CPAP situation or could other things be tried first? If over 90 days for instance, I didnt lose the weight and show better AHI on a retest, then go to CPAP?
I had these same thoughts when I was first diagnosed. Is your sleep doc a pulmonary specialist or ENT? A physical exam of your mouth/upper airway can help determine whether losing weight would have any significant impact on your apnea. However, based on the research I've done and consultation with my doctors, it is not likely your weight that is causing the apnea. Were you diagnosed with Obstructive Sleep Apnea (OSA) or Central Sleep Apnea (CSA)?
jbt1125 wrote:3) Are there any potential significant side effects from the CPAP machine? Not talking about uncomfortable masks or dry lips. I mean more serious stuff. I thought that I read that CPAP can acutally CAUSE central apneas, dependence on the machine, air bubbles in the skull, ear pressure issues, etc. I tend to have ear issues - eustachian tube dysfunction, benign positional vertigo, etc. Should I expect side effects from the CPAP to my ears?
The common side effects of CPAP therapy are: extra energy, greater cognitive skills, ability to focus better, more positive mood, less nocturnal awakenings, improved healing (due to increased restorative sleep), and even weight loss.
I reacted just the way you are just a short time ago but found comfort in my diagnosis (or better said...prognosis) here on this forum and from a well thought out consultation with my sleep doc. Don't let anyone quickly talk you into surgery as the best success rates range from 40-50%. The modern CPAP machines are quiet, small and very portable. The masks range from a full-face mask (covers nose and mouth) to nasal pillows (rests comfortable against nostrils). Heck, even Shaq made his peace with CPAP:
http://youtu.be/4JkiWvWn2aU. Keep searching and talking here - there's nothing that hasn't been asked here or dealt with by the members of this forum.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:21 pm
by Pugsy
Welcome to the forum.
I am short on time at the moment so let me field a couple of quick questions and answers if I can.
jbt1125 wrote:I read that CPAP can acutally CAUSE central apneas
There is a very small percentage of people who don't have centrals without using the cpap machine who end up having centrals pop up when using cpap pressure. 10 to 15 % or so..very small percentage and this is usually discovered during the titration sleep study where they play with the pressures to see what you need. Sometimes they start later.
Sometimes it isn't much of a problem and sometimes a person has enough centrals to present a problem...there are special machines to deal with the central problem should it pop up.
Air bubbles in the skull? That's a new one on me. Never heard of it.
jbt1125 wrote: I tend to have ear issues - eustachian tube dysfunction, benign positional vertigo, etc.
I also have Benign Positional Vertigo...has not been made worse at all.
Now sometimes I get that feeling we get when we are in an airplane with changes in altitude..you know the feeling?
That's the worst of my ear symptoms and easily cleared just like I clear it when flying...swallowing or yawning or whatever someone does to equalize the pressure feeling.
A few people have experienced an increase in vertigo with the cpap pressures but it isn't hugely common.
jbt1125 wrote: dependence on the machine,
No, that won't happen like you are are probably thinking. The machine doesn't breathe for you like a ventilator. All it does is add a bit of positive airway pressure into the airway in an effort to sort of hold the airway open and prevent the airway tissues from collapsing.
Now some of us that are so used to using the machine we can't sleep well without it but that is habit and the desire for good sleep vs crappy sleep without the machine. It's more of a mental thing and not a physical need.
If you lost a few extra pounds would you still have the collapse of the airway and need the machine? Maybe, maybe not...no way to know. Did you know that there are a lot of skinny people who have the same floppy airway tissues and they don't have any excess body weight to blame it on. It isn't all about a person's weight or body fat content. It's about the patency of the airway tissues. We get people here all the time that are up the river of denial and want to just "lose the weight" and have the OSA go away...you would need to lose the weight and have another sleep study to make sure. Losing weight isn't a guarantee that the OSA will go away. Of course it's always a good thing to lose a few pounds if we need to but losing the pounds doesn't guarantee you get to lose the machine.
If you want to go that route...use the machine while losing the weight and keep it off and then have another sleep study.
Don't put off using the machine while you go get crazy with the exercise...that's not a smart thing to do.
Side sleeping...may or may not work....some people yes..if they have all their events when supine sleeping and none when side sleeping but often supine sleeping is just a worst case scenario and they have more events when supine sleeping but they still have enough events when sleeping on their side to have a problem. Besides...trust me...staying off your back is easier said than done for a lot of people.
Yes, some people do have some extra hard struggles with sleeping with the mask stuck on the face and all that but there's also a lot of people who it simply isn't much of an issue. I will tell you this...if you go looking for negatives then negatives you will find because they are always easy to find.
When we are up the DeNile river...we look for a lot of negatives so that we have an excuse to avoid doing the work needed to make this therapy wor
k.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:46 pm
by kaiasgram
Pugsy wrote:...we look for a lot of negatives so that we have an excuse to avoid doing the work needed to make this therapy worse.
Freudian slip?
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:50 pm
by jbt1125
Thanks for all the feedback. I should have mentioned - OSA is my diagnosis, not central apneas.
I was being a little tongue in cheek with my topic title... I am not REALLY in denial. What I am questioning is the jump directly to CPAP. WIth other diagnoses, it seems like there are stages of conservative approach. Like, I would guess that surgery would be on the other side of CPAP, after proven CPAP doesnt work. I would have put exercise, diet, sleep position, maybe dental appliance as first line treatments. I read a study widely published from 2009 in Sweden/Finland that a very low calorie diet followed by significant weight loss eliminated sleep apnea in a high percent of the participants. I realize that its not always obesity, that some are skinny and have this. But in my case I am overweight, and I believe that is a contributor.
Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
So part of me just wanted to get some straight talk from folks about their opinion on that.
I am also admittedly, just a little scared about the diagnosis. I would like to know that my body is ok, and not damaged from years of this. I have researched this and cant find specific info. How long does it take to cause heart damage, 10 yrs, 20 yrs, 30 yrs, etc.?
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:53 pm
by Sir NoddinOff
jbt1125 wrote:I am 40 yrs old, 5'11, 205. Not sure what that makes my BMI, but I consider myself about 25 lbs overweight right now, the most so I have ever been. I know that I need to get off my butt and start running again and eating right. Lots of excuses - little kids, work, etc.
My wake up call came recently after my wife commented on how much and how loud I snore. It's not really new, just has gotten worse. Sure, I need coffee in the morning and late afternoon, but have never felt overly tired, falling asleep at work, falling asleep driving, etc. Have never gone through any of that. My blood pressure reads normal, at least during the day. Normal EKG and recent check-up, etc.
Had a sleep study done. AHI is 29. The doctor has prescribed another sleep study titration with CPAP. Here are my questions -
1) assuming this has been going on for awhile, at my age of 40, am I at risk for already having done damage to my cardiovascular system? Or does it take longer? I am wondering whether I should see a cardiologist for a full checkup, whether damage could have already been done?
2) While I realize that the AHI 29 is high, are there any other options rather than jumping straight to CPAP? I know it works. But I also read that it can be a very uncomfortable and long journey to find the right pressure, mask, deal with side effects, etc. For example, what if I got crazy serious about exercise and diet with the goal of losing 20-25 lbs over the next 6 months. Could that eliminate the sleep apnea or greatly reduce it? Combine that with special shirts/pillows to be on my side, etc.? In other words, with my AHI index, is it just a straight to the CPAP situation or could other things be tried first? If over 90 days for instance, I didnt lose the weight and show better AHI on a retest, then go to CPAP?
3) Are there any potential significant side effects from the CPAP machine? Not talking about uncomfortable masks or dry lips. I mean more serious stuff. I thought that I read that CPAP can acutally CAUSE central apneas, dependence on the machine, air bubbles in the skull, ear pressure issues, etc. I tend to have ear issues - eustachian tube dysfunction, benign positional vertigo, etc. Should I expect side effects from the CPAP to my ears?
I am trying to get in to see the ENT to ask these questions first hand. So far all my info has come through his nurse. So in the meantime, just wondering if this community has answers/feedback. I am freaking out a little right now about the diagnosis. THANKS!
Regarding topic one: Don't worry about things you can't change. You're now forty and are going to be making life changes. I wish I done CPAP that early! Get the correct therapy for your sleep problems now and don't look back.
Regarding topic two: 29 is not crazy high AHI but it's time to get it under control. Sleeping on your side, dental appliances and BreatheRite strips etc may help delay the day of judgement (it did for me in a very modest way). However, sooner or later you'll end up on CPAP - IMO. Exercise and weight loss are great and will help with your therapy, but probably not fix it. Most everything else is stop-gap until you get on the machine.
Regarding topic three: Mostly the downsides are simply minor stuff like dry mouth, drippy sinuses, endless mask leaks and so forth. CPAP therapy by-and-large is non-invasive and will help you sleep better. Yeah, you won't be quite as sexy while asleep and you'll have to spend a lot of time learning new stuff, however
you have to decide if its worth it for you and your lifestyle. Yes, CPAP can cause centrals (I'm one of those few people) but it's only a few percentile of all CPAP users and concerns mainly people with pulmonary and heart issues. Worry about that stuff later because there are specialized therapies like ASV that can take care of it.
The last issue: Don't freak out. YOU ARE ONE OF THE LUCKY ONES TO HAVE FOUND OUT YOU HAVE SERIOUS SLEEP DISORDER EARLY, AND IMO, YOU ARE VERY UNLIKELY TO HAVE ANY RESIDUAL DAMAGE TO YOUR BODY.
You've heard the expression 'Sack up, dude'. I've modified that to: MASK UP, DUDE.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:53 pm
by Pugsy
kaiasgram wrote:
Freudian slip?
That's what happens when you misspell a word with a correct spelling of another word...it just can't read my mind...I will go fix that little boo boo right now.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 7:56 pm
by chunkyfrog
Auto-correct attacks again!
Welcome, jbt.
More pleasant side effects of cpap use:
--increased stamina and strength while exercising.
--better concentration and memory
--happier wife (don't make me draw you a picture, sir!)
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:11 pm
by Pugsy
jbt1125 wrote:Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
Ahh...doesn't sound so bad huh?
Roughly every other minute through the night you are stopping breathing...oxygen levels drop...heart gets stressed out...heart works harder trying to oxygenate the blood so that some important organs in your body don't starve...heart produces a little stress hormone called ANP
http://en.wikipedia.org/wiki/Atrial_natriuretic_peptide ( and I think another stress hormone that I don't remember the name) which in turns goes to the kidneys and the kidneys kick into over drive...adrenaline gets dumped in the blood stream...pulse races...blood pressure increases.
So you are putting undo stress pretty much on your entire circulatory system every other minute throughout the night..and that's the best case scenario assuming you spread those events out equally throughout the night when in reality they don't come spaced out nice and evenly...they like to come in nasty clusters like every 30 seconds for 5 or 10 minutes so that multiplies the stress because the body doesn't get to recover before it gets slammed again.
Not to mention that each time this happens it is disturbing sleep cycles at the same time.
You are worried about past damage...and at the same time you are trying to say that it's okay to have this happen 29 times an hour? Sounds like DeNile to me.
I don't mean to sound snarky or mean...just trying a little 2 X 4 treatment to get your attention.
Get the titration study...get the machine...it may not be nearly as bad as you think...use the machine while you try to lose the weight...then get another test and see if you still need the machine. We will all shout our congratulations if you achieve that goal and get to lose the machine but time and time again people who have lost lots of weight come back here and say "damn, I lost all that weight and I am skinny and not only do I still have to use the machine...my pressure needs increased".
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:17 pm
by Kenwood
jbt1125 wrote:
Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
AHI of 29 is a high number and NOT to be taken lightly. I had super, duper, scary, holy-crap, your gonna die, AHI of 131. By using CPAP you will be adding years and years to your life.
BTW - Loved the Shaq video....I never knew that he had SA.
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:19 pm
by jbt1125
Kenwood wrote:jbt1125 wrote:
Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
AHI of 29 is a high number and NOT to be taken lightly. I had super, duper, scary, holy-crap, your gonna die, AHI of 131. By using CPAP you will be adding years and years to your life.
BTW - Loved the Shaq video....I never knew that he had SA.
This was a very helpful post, thank you. So 29 IS high... that is helpful, thanks again
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:23 pm
by Kenwood
jbt1125 wrote:Kenwood wrote:jbt1125 wrote:
Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
AHI of 29 is a high number and NOT to be taken lightly. I had super, duper, scary, holy-crap, your gonna die, AHI of 131. By using CPAP you will be adding years and years to your life.
BTW - Loved the Shaq video....I never knew that he had SA.
This was a very helpful post, thank you. So 29 IS high... that is helpful, thanks again
AHI of 29 is borderline Severe Sleep Apnea
Mild AHI = 5 - 14
Moderate AHI = 15 - 30
Severe AHI >30
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:24 pm
by jbt1125
Pugsy wrote:jbt1125 wrote:Maybe my AHI 29 is high enough that the dr. wants to jump straight to CPAP. But reading around here, 29 doesnt seem THAT high.
You are worried about past damage...and at the same time you are trying to say that it's okay to have this happen 29 times an hour? Sounds like DeNile to me.
".
To be clear, I am not saying its ok. I am not saying that I intend to do nothing. But I am trying to educate around degrees, severity of the condition. Your post would be accurate for a AHI of 10 or of 100, only difference is the incidence/intervals, correct? So trying to get a feel for what is low, med, high. And why jump straight to CPAP. Its NOT ok this is happening at 29 times/hour. I AM worried about past damage. But if I lost 20 lbs over the next 90 days and retested, what would be the downside of that? If results are same, do not pass go, straight to CPAP. But if it ends up making a huge difference, probably worth it? The answer might be - 29 is high, and every day is more damage. Or - get on the CPAP, exercise, and easy to come back off the CPAP if you drop a bunch of weight and retest negative. I think that is what you are recommending to me. thanks again!
Re: Just diagnosed, in denial, questions....
Posted: Mon Apr 22, 2013 8:36 pm
by Lugus
The downside is 90 more days of stopping breathing every couple of minutes with a massively increased chance your heart will stop and your family will be without a brother/father/spouse etc.
http://esciencenews.com/articles/2008/0 ... risk.death
It took years before my spouse pushed me enough to be tested and believe me I was shocked. Although my AHI was 22 my average time without breathing was 42 seconds and my longest times where 72 seconds. The sleep apena has led to Polycythemia and blood so thick you can use it like glue. At one point the doctors were removing 3 pints of blood a week to allow my heart a chance to rest from the extra work it was doing. Over the course of 6 weeks the infusion center removed all my blood ( around 11 pints) and my body had to generate more. Not something I would wish on anyone.