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

Justin C wrote:

Not only do I hold my breath at night, but I sometimes do it during the day while awake and then realize "hey you're holding your breath, BREATHE".
Sometimes I make strange noises that wake me up, but usually my Fiancee just tells me "breathe" while I'm sleeping and I do without waking all the way up.  She can sleep through anything so I might be waking her up with noise as I doubt she can actually tell I've started holding my breath.

I know this is strange but I thought I did it subconsciously because I'm a white water kayaker and we often have to hold our breath while flipped over.

Interesting to see others that have this issue.

Oh and for one of the earlier posters I'm 33, in good health, and have had no traumatizing events in my past.

Justin C_
Have you figured anything out yet?

I was a national level swimmer until i drowned (underwater training -solo), and often wonder if i hold my breath a night subconsciously after 16 years of competitive swimming.
 
After years of getting poked and prodded by the medical community, i'm ready to use alternative medical solutions (hypnosis/acupuncture/etc) a try.

_wetliver

My questionnaire...

BREATH-HOLDING (AKA "CATATHRENIA"?) QUESTIONNAIRE
Please only complete this if you:  “while asleep, take in deep breath, hold it, then slowly let it out (w/ high-pitched or groaning sound)”:  Y:49  N:1

DEMOGRAPHICS
Gender:  M:25  F:17
Age:  (<20yr):3  (20-25yr):4  (26-30yr):7  (31-35yr):5  (36-40yr):4  (41-45yr):3  (46-50yr):0  (51+yr):1

SEVERITY
# years ‘holding breath’ while asleep:  (0-3yrs):2   (3-9yr):10  (10+yrs): 13
Time of night ‘holding breath’ occurs? (9p-1a):1  (1a-4a):0  (4a-7a):10  (don't know): 4 ... I do it all hours of the night
Wake up, unable to physically TAKE (inhale) a breath?  Y:3  N:9
Occurs every night?  Y:6  N:4

SYMPTOMS
Tired in morning/during day?  Y:11  N:8
Tightness/pain in chest (sore lungs)?  Y:7  N:3
Headaches/dizziness?  Y:6  N:3
High Blood Pressure?    Y:3  N:8
Large sighs/exhalations during day?  Y:5  N:3
Teeth grinding?  Y:5  N:5
Snore?  Y:0  N:8
Abdominal gas in morning?  Y:1  N:48
Have awakened yourself from this?  Y:15  N:1
Have dreams of suffocation?  Y:4  N:57
Difficulty waking up in morning?  Y:8  N:2

OBSERVATIONS
Worse when sleeping on back?  Y:4  N:4
Worse when sleeping on stomach?  Y:3  N:5
Worse when sleeping on side?  Y:0  N:6
Worse when go to bed late/overtired?  Y:3  N:5
I haven't noticed any of the above to lead to it occuring more frequently +1
Worse when stressed?  Y:18 N:0
Hold breath (forgetting to breathe) during day (when concentrating)?  Y:18  N:3

TESTING / TREATMENT
I have not sought treatment for this as of yet +2
Had a sleep study with negative results for apnea?  Y:13  N:4
Stress-test (treadmill with EEG)?  Y:3  N:4
Currently use a CPAP?  Y:6  N: 6
Wear dental appliance/nightguard?  Y:3  N:5
Burping/sighing helps relieve chest pain/aching during day?  Y:1  N:4
Currently taking antidepressants?  Y:2  N:6
Currently taking anti-anxiety medication?  Y:3  N:6

CONTRIBUTING (?) FACTORS
Have asthma?  Y:0  N:8
Have allergies?  Y:3 N:5
Overweight?  Y:1  N:19
Generally healthy otherwise?  Y:2  N:0
Exercise regularly?  Y:11  N:4
Smoke?  Y:0  N:9
Mouthbreather when sleeping?  Y:7  N:3 Not all the time, I'd say about 1/2 & 1/2
Have high stress/anxiety?  Y:9  N:4
# caffeinated drinks per day?  (zero):1   (1-3):6   (4-6):0   (>5):1
# alcoholic drinks per week?  (zero):2  (1-3):2   (4-10):3   (11-20):0   (>20):0
Use recreational drugs?  Y:1  N:8

HISTORY
Practiced breathing control as musician/swimmer/runner/other?  Y:10  N:2
High exposure to chemicals/mold/etc?  Y:3  N:6
Experienced traumatic event?  Y:4  N:8
Family history of holding breath?  Y:5  N:7
Family history of high BP?  Y:5  N:1
Family history of heart problems?  Y:6 N:3

OTHER QUESTIONS
If sleeping partner wakes you, does that stop the symptoms for the rest of night?  Y:1  N:8
Do symptoms seem to increase if too warm when sleeping?  Y:1  N:2  I've found no rhyme nor reason to when I do it. +2
Do you typically wake up during night?  Y:4  N:4
Do you frequently wake yourself from this?  Y:7  N:4
Worse when dream?  Y:4  N:2  I've found no rhyme nor reason to when I do it. +2
Thyroid checked and ok?  Y:3  N:2
Have vivid dreams?  Y:46 N:2
Feel like can't get enough air through nose during day?  Y:4  N:2
Deviated septum checked and ok?  Y:0  N:2
Have recorded the sound?  Y:2  N:7

IDEAS (add topics and your suggestions)
What do you do to reduce symptoms? go to bed earlier; yoga/relaxation exercises
What medications have you tried that help?  Xanax (helped some); Celexa (seemed to help);
What medications have you tried that did NOT help?  
What types of medical professionals have you seen for this?  General, cardiology, pulmonary, neurology, ENT, sleep, psychotherapy, hypnotherapy

I'm sorry if someone already suggested this, for I didn't have time to read every post, but here's something I might try. If you're holding your breath, and this isn't something related to apnea, how about some sort of mouth piece that would keep the air path open. This would rule out stress related jaw type clinching (keeping mouth closed). I orded a device off of e-bay that does just this, however it did not work for me, for this "breath holding" wasn't what I was doing. The device, is just like a snorel mouthpiece. I think that it"breatholding" may be related to an  obstuction , and due to the particular anatomical variation of your nasopharnyx, it manifest itself on the expiratory phase of the respiration. Do any of you that have this cocdition have difficucty breathing through your nose?

I have thought about a mouth appliance.  The problem (for me) is that it is not really an obstruction, but an unconcious self-initiated effort.  I have tried the 'breath right' strips.  They DO improve the nasal air passage flow, but do NOT reduce the incidence of breath holding for me.  

I have been thinking lately that I am snoring, and after a while during the night, I unconciously give up on the effort of breathing and just take a big breath in and hold it.  Unconciously the problem was solved.  But, it is not really a solved problem.

strange that i see a post about this now, i feel i do this too.  either dont' take a breath or hold it sometimes.

I'm the poster of the Questionaire a little over a year ago...

Has anyone learned anything about this "breath holding" issue?

I just read all 11 pages... I just realized I might have this rather than sleep apnea... However, I dont know anything else than whats on these pages... :---(