I've been to 2 sleep studies from 2 different doctors and neither of them listened to what I had to say. All they did was prescribe the damn CPAP which (like Bo stated earlier) does not work for me. The other patients that did the sleep study the same night I did were all at least 45 yrs old (I am 29 and have been doing this since 15) and overweight (I am 6' tall, 170 lbs. now, and was very thin when I first started doing this).
I've been doing this so long I'm not really sure if I feel drowsy the next day or if it's just normal to be able to fall asleep within 3 minutes of closing my eyes at any given point throughout the day.
  I spent the night at my grandfather's house about 5 years ago and he thought someone was using a lawn trimmer at 5 o'clock in the morning. My ex-wife thought it sounded more like a low groan sometimes lasting continuously up to 2 minutes. Like i'm letting the air barely squeak out of my lungs. I used to think it was because I always had dreams of snorkeling and I would hold my breath to stay underwater  
I've also noticed that I usually wake myself up early in the morning, especially after my snooze alarm goes off.
Good luck to everyone else, looking forward to some solid advice/remedy.

not sleepin wrote:

I've been to 2 sleep studies from 2 different doctors and neither of them listened to what I had to say. All they did was prescribe the damn CPAP which (like Bo stated earlier) does not work for me. The other patients that did the sleep study the same night I did were all at least 45 yrs old (I am 29 and have been doing this since 15) and overweight (I am 6' tall, 170 lbs. now, and was very thin when I first started doing this).
I've been doing this so long I'm not really sure if I feel drowsy the next day or if it's just normal to be able to fall asleep within 3 minutes of closing my eyes at any given point throughout the day.
  I spent the night at my grandfather's house about 5 years ago and he thought someone was using a lawn trimmer at 5 o'clock in the morning. My ex-wife thought it sounded more like a low groan sometimes lasting continuously up to 2 minutes. Like i'm letting the air barely squeak out of my lungs. I used to think it was because I always had dreams of snorkeling and I would hold my breath to stay underwater  
I've also noticed that I usually wake myself up early in the morning, especially after my snooze alarm goes off.
Good luck to everyone else, looking forward to some solid advice/remedy.

I do the same thing. But I also have OSA my whole thorat colapes so I don't even qaulify for surgery. Age and weight are not always the case. I am 30 and I have had this sense a child. And I only gained weight after my last child. But it is not enough to colapse my neck. Womans neck has to be over 16inches to have to much weight around neck to colapse.

Any way I still take a breath in and then hold it. I was diagnosed with Severe Centrals as well As OSA. I would seriously look into a nerou sleep doc. With Centrals the brain and tell you not to breath in or breath out. In my case my brain tells me after breathing in not to let it out. And then I wake up and breath out. I am being put on a Vpap to help them. unlike the Cpap this will help my centrals I am told. And others with Centrals on here have had great reports on the Vpap machine

But again there are tons of fit people with Central or OSA. Weight just makes it worse but is not the cause of SA. Some who are morbidly or super obese will have SA do to weight. But that is because their throat has is colapsing under so much weight. And in most cases they have to be on the Cpap even when awake. These are the more extreme cases. But most go undiagnosed for years before weight is even an issue. and then later find out. By that time they are so fatigued or have other health issues that has caused them to gain some weight. Many have reported after thearpy that they have been loosing the weight. Takes a few months to get things started again. Depending on how long you have been SA with no treatment.

I hope you find your answers. Any kind of sleep disorder stinks.


_________________
Severe Central & Obstructive Sleep disordered breathing
AHI:116.4
Lowest Sat 85% High96.1%
Total Central,Obst,& mixed 190/hr
Out of that total 66 were Hypopneas
IpapMin7 max16 Epap6
Bipap Auto SV
Resmed Mirage Swift II

OK, seems that everyone agrees that they have similar symptoms, etc.  We're all in the same boat.

MOST IMPORTANTLY, has anyone found anything out which may be helpful for either a diagnosis or other form of treatment or come up with anything that may help all od us with treatment?

hoyasaxon wrote:

OK, seems that everyone agrees that they have similar symptoms, etc.  We're all in the same boat.

MOST IMPORTANTLY, has anyone found anything out which may be helpful for either a diagnosis or other form of treatment or come up with anything that may help all od us with treatment?

has BiPap worked for anyone? Im sorry, I didnt read the entire thread.

I realize that you guys are terming this as breathe holding, but in reality they are apneas.

There are a few reasons why someone may experience apnea, which have been discussed on the board, so I will not waste anyones time.

After reading the past 2 pages (although not all 13) and comparing to what my son does, I am wondering.....could this be a form of Upper Airway Restriction Syndrome?
My son does this both on exhaling  and on inhaling ....He takes a long (5 sec), deep, breath, holds it another 2-5 secs (often during this holding time he tries to take several more brief inhalations, then has a long exhalation (lip sputters, groans) then does not breath again for 13-50 seconds, long, deep inhalation.....Then after 20 minutes or so of this he will hold his breath for 13-40 secs, exhale, groan, whine, take another long, deep breath....

During this he wakes up / or rather 'arouses' many times.  He sleep study indicated an AHI of 1.2; however I was present and did not obsereve any of these altered breathing episodes that night---it does NOT happen every night..

Is this the same thing you all are describing, or different?  His dr has suggested it may be UPARS.

re: treatment:  I am thinking that a cpap that will adjust automatically to his breathing (inhalations and exhalations) and provide air pressure when he needs to exhale would work the same as when people need help to inhale....because the problem is the same:  the throat has collapsed and needs something to force it open--whether it is during in- or ex- haling.  

That's if it is UARS.

How is this type of breathing distinguished from CSA?  My son's abdomen movements cease during it.

embryopathy wrote:

After reading the past 2 pages (although not all 13) and comparing to what my son does, I am wondering.....could this be a form of Upper Airway Restriction Syndrome?
My son does this both on exhaling  and on inhaling ....He takes a long (5 sec), deep, breath, holds it another 2-5 secs (often during this holding time he tries to take several more brief inhalations, then has a long exhalation (lip sputters, groans) then does not breath again for 13-50 seconds, long, deep inhalation.....Then after 20 minutes or so of this he will hold his breath for 13-40 secs, exhale, groan, whine, take another long, deep breath....

During this he wakes up / or rather 'arouses' many times.  He sleep study indicated an AHI of 1.2; however I was present and did not obsereve any of these altered breathing episodes that night---it does NOT happen every night..

Is this the same thing you all are describing, or different?  His dr has suggested it may be UPARS.

re: treatment:  I am thinking that a cpap that will adjust automatically to his breathing (inhalations and exhalations) and provide air pressure when he needs to exhale would work the same as when people need help to inhale....because the problem is the same:  the throat has collapsed and needs something to force it open--whether it is during in- or ex- haling.  

That's if it is UARS.

How is this type of breathing distinguished from CSA?  My son's abdomen movements cease during it.

I think that UARS can be ruled out because UARS does not focus on any switch in airflow. It is relatively stable airflow with arousals. No desats, apneas, or hypopneas.

The groaning that you mention may be an alarm bell. Groans, Grunts, Gasps can all indicate an obstruction. Im not suggesting this is the issue, just making a general statement.

There may be other breathing abnormalities out there such as Kussmauls, Cheyne-Stokes, Biots, Etc. Again, I doubt any of those apply, but there may be a rare type that is being missed.  

[quote="RAM_Sleep]I think that UARS can be ruled out because UARS does not focus on any switch in airflow. It is relatively stable airflow with arousals. No desats, apneas, or hypopneas.[/quote]

ohhhh; hm.  just when I think i know what's going on.....ha! This confirms in my mind that the sleep study was not representative of his normal sleep....So I am back to thinking he either has periodic central apnea or, like you say below....

Quote:

There may be other breathing abnormalities out there such as Kussmauls, Cheyne-Stokes, Biots, Etc. Again, I doubt any of those apply, but there may be a rare type that is being missed.  

previously i was wondering about cheyne-stokes, but he doesn't ever have rapid breathing.  it's always hard for me to understand the writeen description of cheyne-stokes tho'.....don't want to get too off topic of this thread tho....Could you maybe start a new thread about rare types of breathing disorders?  I've not heard of the kussmauls and biots....thanks

I am thrilled to find so many others that have this same syndrome!
I think that the name "leaky beach ball" is an excellent description.
I see that there are 11 pages to read in this forum.
Has anyone counted up the number people that have this LBB syndrome in this forum?
I want to read throught this forum completely before I put in my 2 cents worth and ask my questions.
bye for now.   -Delbert