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would DISE help me ?
#1
would DISE help me ?
Hello all, i appreciate all the answers i received to my posts here, but i has been 3 months now using PAP machines and i still can not sleep efficiently ( or at least enough to function fine through the day ). 
My AHI is sub zero, but i keep waking up all night also without being able to have deep sleep, so i am not refreshed in the morning.

IT SEEMS TO ME THAT I AM VERY SENSITIVE TO THE MACHINE, MY BRAIN DOES NOT ALLOW ME TO ENTER INTO DEEP RESTORATIVE SLEEP. 

I have tried all the advises of constant cpap, low range, allowing the bilevel machine to adjust the pressure, etc etc..

My ENT says i don't have anything weird when he looks deep inside my throat, except it is a bit narrow.

My snoreLab app( shows i snored around 30% of the time, i am not a mouth breather and i did not snore before i had this "apnea" 7 months ago.

I scheduled a drug induced sleep endoscopy in 2 weeks, one of my doctors said the results of DISE may or may not show what really happens when i sleep, because it's not real sleep and because my sleep study showed a predominant REM apnea. 
Though the day, i feel the need to swallow my saliva a lot, i also feel a slight "sticky" feeling in my throat, i KNOW that is why i can't breath correct at night, but unfortunately after art least 10 ENT visits/sleep specialists, they don't see what it is or why it is happening.

Any advice? anyone tried DISE? i'm trying to stick to the PAP, but so far my sleep with or without APP is very similar. 

i ran out of options and doctors to see, but i don't want to stay still because i'll go into depression. 

thanks

P.S: if you want to see my lab results/sleepyhead screenshots check my previous posts.
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#2
RE: would DISE help me ?
What do you hope to learn? The DISE procedure is safe and can answer questions about the mechanism of apnea. It is not done while using CPAP, so it is realistically a procedure to plan a surgical solution. You are completely treated with your current therapy, but have spontaneous arousals. Even if any upper airway is ultimately resolved by surgery, there is no guarantee your sleep quality will significantly improve, however it might. What the test won't tell you is why your current therapy awakens you. When did your sleep disruption start?
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: would DISE help me ?
(03-19-2019, 07:15 PM)Sleeprider Wrote: What do you hope to learn? The DISE procedure is safe and can answer questions about the mechanism of apnea. It is not done while using CPAP, so it is realistically a procedure to plan a surgical solution.  You are completely treated with your current therapy, but have spontaneous arousals.  Even if any upper airway is ultimately resolved by surgery, there is no guarantee your sleep quality will significantly improve, however it might. What the test won't tell you is why your current therapy awakens you.  When did your sleep disruption start?

Thanks for your insight. My issues started August last year after some seriise GERD I assumed was the culprit and neck injury I also assumed was culprit. 

I was waking up spontaneously at night , not able to complete the whole sleep and feeling dridro/zombie through the day.

Later I started to notice the feeling
g of something sticky in my throat which led me to check my first ENT who didn't see anything other than (normal Inflammation from the acid) .

I then went on PPIs/acid diet, and did a sleep study showing apneas and RERAs.
Got apap and thought it will help me sleep while my inflammation heals.

Fast forward 4 months I used apap then biLevel and my sleep is still defragmented.
Machine is letting my AHI below 1 but I still wake up at night in REM and get some RERAs that I feel when waking me up.

I am assuming I am not able to sleep deeply because of the machine because I had similar experience few years ago when I tried Invisalign trays and I was not able to go to deep sleep when I had the trays in my mouth.( Which developed something called burning mouth syndrome later, a burning sensation in the upper palate of my mouth that is still there even I stopped the invisaIign after a month).

My hopes? 
1- that I could sleep with the PAP machine, but with all the recommendations I got here, it did not work. 
2- that DISE would find what is blocking my airway and I could remove it? Or do spesific exercise to strengthen the muscles for it? 
3- that I could find an ENT who could see what is causing my obstruction and maybe suggest a solution for it?
4- that my throat heals and can sleep without the machine? 

Right now I am not alive, I go to sleep wake up as a zombie, try to keep my eyes glued to any screen to stay alert, and try again at night . 
Again, I'm not overweight, don't take meds or drink or smoke, and didn't even snore before, now when I hear my snoring in the recording it's like I am suffering not sleeping, untill my body wakes me up to move and breath normal again.
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#4
RE: would DISE help me ?
I'm not very good with sleep problems that don't involve the therapy, so probably not much help. I notice you don't have any bad habits, and maybe you need some to sleep better...they work for me Smile The way I see it, you will have a diagnostic procedure by an ENT with the hopes of finding what causes your disrupted sleep. The problem with that is your sleep disruption can't be simulated under anesthesia. This procedure will identify the causes of apnea and flow restriction while untreated with positive air pressure, and the only use for that diagnostic is to guide the extent of surgery that will follow.

You seem to have chronic insomnia, and I'm not confident that a surgical solution will be any more effective in treating that problem than your current bilevel positive pressure. Treatment for insomnia can include behavioral, psychological, medical components or some combination thereof. If you are still open to non-surgical medical, medicinal, counseling or other solutions then just understand that DISE will not point you to those, but will invariably result in surgery. The only way surgery helps insomnia is if the flow restriction is actually the mechanism of your sleep disturbance, and we have seen individuals have complications using PAP therapy following these procedures, as well as other problems including worsening GERD. Take a very careful look at whether you think UPPP is for you and understand the problems it can solve or cause, because by doing DISE, you are basically walking a one-way path. If you were seeing a urologist, you'd be getting a cystoscopy because that's what they do. So the bright side of seeing an ENT is that he is going to approach you from a different direction because this is what they do.
Sleeprider
Apnea Board Moderator
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____________________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: would DISE help me ?
(03-19-2019, 09:08 PM)Sleeprider Wrote: I'm not very good with sleep problems that don't involve the therapy, so probably not much help. I notice you don't have any bad habits, and maybe you need some to sleep better...they work for me Smile   The way I see it, you will have a diagnostic procedure by an ENT with the hopes of finding what causes your disrupted sleep.  The problem with that is your sleep disruption can't be simulated under anesthesia. This procedure will identify the causes of apnea and flow restriction while untreated with positive air pressure, and the only use for that diagnostic is to guide the extent of surgery that will follow.  

You seem to have chronic insomnia, and I'm not confident that a surgical solution will be any more effective in treating that problem than your current bilevel positive pressure.  Treatment for insomnia can include behavioral, psychological, medical components or some combination thereof. If you are still open to non-surgical medical, medicinal, counseling or other solutions then just understand that DISE will not point you to those, but will invariably result in surgery. The only way surgery helps insomnia is if the flow restriction is actually the mechanism of your sleep disturbance, and we have seen individuals have complications using PAP therapy following these procedures, as well as other problems including worsening GERD.  Take a very careful look at whether you think UPPP is for you and understand the problems it can solve or cause, because by doing DISE, you are basically walking a one-way path.  If you were seeing a urologist, you'd be getting a cystoscopy because that's what they do. So the bright side of seeing an ENT is that he is going to approach you from a different direction because this is what they do.

Ouch! i see, i understood and just to be clear i am terrified from surgery because of the side effects. The only time i seem to tolerate PAP was with ambien and i don't want to be addicted to sleeping pills to be able to sleep at night. Using PAP each night, results in a random, -usually negative outcome- i think the machine helps my obstruction but my brain can not "calm down" while on it. 

For comparison sake, yesterday when i slept without mask to test the snoring app, o noticed that although i kept waking up because of the obstruction, i was more "sleepy, my head more drowsy" when i woke up than i usually am when i wake up with PAP where i wake up more "alert". 


This led me to the conclusion that my brain is hyper sensitive to the PAP machine or something that it does ( mask presence or change of pressures or trigger check for inhaling or exhaling, i'm not sure) but my brain knows that something does not feel natural and so it can not relax and fall into deep sleep.

I don't know if you have seen similar cases here in the forum and how did they resolve their issue, was it time? a different therapy? surgery? 

I am not expecting that you will have all the answers SleepRider, although you have been great help for people in this forum. so thank you.
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#6
RE: would DISE help me ?
Sensitivity to the PAP machine is best addressed by setting a constant pressure. On a bilevel that is S mode. You may benefit from surgery, who knows? I'm advocating for an alternative, to address the anxiety or sensitivity or other possible causes first; including possibly talking to your family doctor about a sleep aid. If you do the DISE procedure, the apnea and air restriction you experienced before PAP will obviously be present under anesthesia, and your ENT will propose a surgical solution. If you want to try other avenues first, now is the time.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: would DISE help me ?
(03-20-2019, 07:57 AM)Sleeprider Wrote: Sensitivity to the PAP machine is best addressed by setting a constant pressure. On a bilevel that is S mode.  You may benefit from surgery, who knows? I'm advocating for an alternative, to address the anxiety or sensitivity or other possible causes first; including possibly talking to your family doctor about a sleep aid.  If you do the DISE procedure, the apnea and air restriction you experienced before PAP will obviously be present under anesthesia, and your ENT will propose a surgical solution.  If you want to try other avenues first, now is the time.

Sleeprider, thank you for the advise, i gave myself another chance to make the PAP work, last few nights, i could find 'half a solution' i hope if you give it a deep thought maybe you can guide me how to get a complete solution :

from my previous trials and posts(see graph2), i have found out that if i start the night with EPAP 4 not more, i can sleep a continuous 3-4 hrs straight. Remember when i said i'm sensitive from the machine, it seems that EPAP 5 and up, makes me "sensitive" i also keep waking up more often which messes up my deep sleep. 
SO as you can see in the attached graph, i get good 4 hrs sleep almost without waking up ( or without remembering waking up ) which helps me NOT be a zombie next day.

The problem is after the initial 4 hrs, those numbers don't work anymore, i think because i get more REM sleep, and because i have a REM predominant apnea, i start waking up feeling obstruction inside my throat, and as you can see in the graph, i kept trying to increase EPAP/PS and the issues are :
EPAP > 7 is too much pressure, i get the chipmunk cheeks. less than that and i still keep waking up.
PS over 6 causes hyperventilation to my lungs as well, so i keep waking up with my lungs involuntary and fiercely making a strong breath.
The machine does not seem to figure it out on its own or increase the pressure fast enough for me to stay asleep. 

What can i do to continue the second half of the night asleep ? my AHI in sleep study was 17/h and REM AHI was 42/hr.

thank you

[Image: u5kqsfn.jpg]


GRAPH 2 : last month when i was trying constant pressure ( had 5 hrs continuous sleep)
[Image: LHvsUBY.png]
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#8
RE: would DISE help me ?
Why not just set the pressure to fixed at EPAP 4, IPAP 10.6 and see if that is your solution...mode S with Easybreathe on.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: would DISE help me ?
(03-21-2019, 03:59 PM)Sleeprider Wrote: Why not just set the pressure to fixed at EPAP 4, IPAP 10.6 and see if that is your solution...mode S with Easybreathe on.

Aaah , i am trying to remember but i think i used EPAP 4, PS 6 and max 10 (not in S mode but i think same result, right?) if my memory is not bad, (i'm not in front of my pc now ) i think again the constant pressure can not deal with the small flow variations ( see graphs with more flow limits, and if i slept fine the first few hours, the constant pressure for sure can not deal with the higher obstructions later in REM sleep).

TBH, i think the constant pressure and leaving IPAP max open both have very similar results in the first few hours (with EPAP 4),  but it's the second half of sleep that i'm struggling with. 
I wish it wasn't that complicated,(it took me almost 3 months just figure out that i'm intolerant for EPAP > 4 !!) this is why i was almost giving up on the PAP therapy.

I'm attaching 3 graphs for you to see first with almost same numbers you suggested(4/6), and others two with (4/5 and 4/7).


Do you still think i should stick with S mode instead ?


first: 4/6

[Image: nDy45sV.png]

second: 4/5

[Image: 4fM6LXR.png]

Third: 4/7:

[Image: Hj0Kwre.png]
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#10
RE: would DISE help me ?
You need to decide if the changes in pressure are more disruptive than a few recorded events. Seriously, I have anywhere from zero to 2.6 AHI depending on my night, and to me, that range is all tolerable and makes no difference. You have aerophagia and you are sensitive to pressure. I would think that is your priority over a few minor events. We are not trying to achieve 0.00 events here, we want you to sleep well and comfortably. You are very close to meeting your needs, but a third party, me or your doctor, can't tell you what is best for you. This is where you become the expert. You have all the tools and knowledge you need to achieve your best results. You can use your acquired knowledge to help yourself and others on the forum...welcome to the graduate class. You are the owner of your therapy and simply need to make the decisions to use what works for you.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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