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Can someone tell me if they saw "this" before or know what is this?
#1
Can someone tell me if they saw "this" before or know what is this?
Hi all, this is not my first post here, i posted many times and you were all helpful, but i am returning here because after all the questions, trials, doctors, and 2 years time passed, i can't and nobody else is able to figure what exactly is waking me up!

if you want the shortcut and to be able to exactly "see" what is happening, here is a video of my homemade sleep endoscopy , it shows what an "arousal" happening at the end of the video, that is what happens though the night , every night and wakes me from sleep. it happens always while i am drifting to sleep, starting to dream, and through the night, each 2 hrs first, then at the end of the night, each 10 mns almost. i am always dreaming when it happens and i wake up!
P.S: wore an oximeter to check my oxygen saturation before these jerks happen and was above 95%.

here is the video link : https://youtu.be/2qXF8oxJfVs

if you want to read what i did in those 2 years, here it is by chronological order: 
 I always slept deep for at least 8 hrs straight without any problems, not smoker/drinker no drugs or meds, just morning coffee.

  • 2/2018: a chiropractor cracked my neck so hard I felt nauseous, then back of neck pain/burning for 3 months with difficulty to sleep, then went away.
  • 4/18: acid reflux was coming with vengeance, did upper GI endoscopy and found mild gastritis
  • 8/18: STARTED WAKING UP THROUGH THE NIGHT, NO REASON WHY, MOSTLY WHEN I AM FALLING ASLEEP OR WAS DREAMING. DON'T WAKE UP SUFFOCATING, OR NOT BREATHING. JUST GET A STRONG SIGNAL OF "ALERTNESS" AND MY BRAIN WAKES UP. I COULD SLEEP FAST ENOUGH AGAIN MOST OF TIMES. CLOUDY BRAIN, NOT ABLE TO FOCUS THROUGH THE DAY NOT ABLE TO WORK(PROGRAMMING).
  • 11/2018: sleep study showing : 61% sleep efficency
                                                    23 arousals/hr
                                                    13 arousals/r apnea/hypopnea
                                                    6.5 RERAs/hr
                                                    REM & NREM  AHI: 17/hr
                                                    REM AHI: 43/hr
  • 1/19: fast forward trying to figure it out( dust, air purifier, noise machine, supplements, etc..) did a sleep study showed AHI 17 with hypopneas and RERAs.
  • 2/19: tried CPAP and did not stop the awakenings.
  • 3/19: tried bi-level machine(advanced CPAP) did not do anything. Still waking up, still fragmented sleep still zombie.
  • 4/19: found famous NYC doctor about Upper airway resistance, and performed a surgery of UPPP, removed part of epiglottis, and tonsils. 3 months later no improvement.
  • 7/19: tried MAD( mandibular advancement device) no improvement.
  • 8/19: second surgery of partial glossectomy( remove part of base of tongue). Very minimal improvement of the severity of zombiness through the day but no effect on multiple awakenings.
  • 11/19: home sleep study:
    The patient spent 16.7% in REM.The time in the supine position (wake and sleep) was 3 hrs. 15 minThe time in the non-supine position was N/A minutes.pRDI: 12.2 (REM: 12.1 ; NREM: 12.2)pAHI: 5.7 (REM: 6 ; NREM: 5.6)pRDI supine: 14.7pAHI supine: 5.9Oxygen Desaturation Events (ODI%): 5.5ODI% (Supine): 5.3RECOMMENDATIONSSaturation < 90%: 0.1 minutesSaturation < 88%: minutesSaturation < 80%: 0 minutesSaturation < 70%: 0 minutesLowest Oxygen Saturation: 84%Average Desaturation: 93.8%Average Oxygen Saturation: 97%The minimal oxygen saturation was 84%. Time below 88% was 0 minutes.Min pulse rate 33 bpm. Mean pulse rate during sleep was 61 bpm. Max pulse rate 117 bpm.Mild Obstructive Sleep apnea(OSA)Mild Oxygen Desaturation
  • 11/19: tried a nasal stent( a wire mesh to keep soft palate open). Didn't do anything to my sleep.
  • 9/19: sleep endoscopy showed no collapse this time ( had total of 3 sleep endoscopies which doctor said my issue happen in REM and sleep endoscopy use anesthesia which can not mimic REM sleep) so the doctor said nothing more can be done!
  • 1/20: I purchased a fiber-optic endoscope to try to sleep with it and see what is actually happening, I could only almost fall asleep with it but not completely sleep, in those trials it showed: my arytnoids spasming, and tongue partially closing airway, and my throat getting "an electric shock as soon as I fall asleep which in the video looks like a sudden twitch in all my throat, tongue muscles. I Showed the video to my doctor so he decided to do a 3rd surgery set. ( video link is attached to this email).
  • 2/20: 3rd surgery of base of the tongue advancement, hyoid bone suspension, and shaving of excess tissue on arytnoids.
  • 3/20: Very light improvement, I'm still waking up through the night and getting on/off days.
I also recorded myself with video and could see my jaw/face jerking before i wake up, i don't know if these are related to my throat jerks or in parallel or because my latest surgery which the doctor has implanted a plate in my chain to tie my tongue base to it, so maybe these jerks are new because of it and maybe they were there before i don't know.

Medication i tried:
I tried: Klonopin, amitriptyline, Magnesium glycinate, ALA, Ambien, CBD oil, electrolyte, Melatonin. Nothing did stop the jerks. Amitriptyline kept me sedated to sleep longer hours when I keep waking up which helped the zombiness.

I always thought that the jolt I get was because my body was felling a partial obstruction and wakes me up before a full obstruction, but after all these surgeries plus CPAP machines I am now thinking maybe i was waking up because of the nervous jerks not breathing problems( although I might also have had them in parallel) !!
i wore an oximeter to check if there is a drop in oxygen before that throat jerk happens but my oxygen level was not less than 95%.

I am now thinking that the sleep study threw me ( and doctors) off the real reason by focusing on upper airway respiratory problems instead.
I always had suspicions about hypnic jerks( before recent videos) and I went to many neurologists asking if there was a way to test those jerks while I am sleeping or in a sleep study and the answer was NO there were not.

Question: What is happening? what is that jerk in my throat? what can i test/try ? doctor to see? 

thanks
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#2
CPAP use is making it worse!
i tried my Aircurve 10 VAUTO today, 2 months after the surgery, and it makes my "jerk" happen more.
I think the jerk is even the arytenoids or the last spasm as in this video: https://youtu.be/2qXF8oxJfVs

I am attaching also a sleepyhead screenshot to show you the jerk in the graph as soon as i drifted to sleep which woke me up and i stopped the machine , the arytenoids spasm or my whole throat spasm, and there is an involontary quick inhale as in 2nd graph attached.

if you want to read what i am talking about and maybe give an opinion, please refer to my ( still with no comments yet i posted last week ) :
http://www.apneaboard.com/forums/Thread-...at-is-this

Why is the machine increasing my jerks? without it i seem to be able to sleep little for few hours before the jerks start happenig with a vengence ( or the apnea i am not sure which now..)

Advice is appreciated
thanks
[Image: SqtPQ4D.png]

[Image: S6Pw13t.jpg]
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#3
RE: Can someone tell me if they saw "this" before or know what is this?
Hi Sleepyzzzz. I have put your two threads together so that all the information is in one place.

I'm sorry I personally have no idea how to address this problem, which is not something I've seen before. Hopefully some other members will be able to assist.
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#4
RE: Can someone tell me if they saw "this" before or know what is this?
Thanks
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#5
RE: Can someone tell me if they saw "this" before or know what is this?
Hi

I also have laryngospasms at night when falling asleep, to combat the situation I have setup my Bipap as follows:

Easy breathe : off
Trigger : Very high
Cycle : high
rise time 500ms
ps : atleast 5
mask type : pediatric (this makes it even more sensitive)

Unfortunately theres no specific medication for this. A complete solution would be a tracheotomy.
I do take Magnesium orotate 1200mg daily on top of Cetirizine 10mg at night, Dunno if that helps much though.

Also I noticed that my body's reaction to a laryngospasm is very severe and if it happens i top it off with 2mg of propranolol to calm my racing heart after.
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#6
RE: CPAP use is making it worse!
(04-09-2020, 09:56 PM)sleepyzzz Wrote: i tried my Aircurve 10 VAUTO today, 2 months after the surgery, and it makes my "jerk" happen more.
I think the jerk is even the arytenoids or the last spasm as in this video: https://youtu.be/2qXF8oxJfVs

I am attaching also a sleepyhead screenshot to show you the jerk in the graph as soon as i drifted to sleep which woke me up and i stopped the machine , the arytenoids spasm or my whole throat spasm, and there is an involontary quick inhale as in 2nd graph attached.

if you want to read what i am talking about and maybe give an opinion, please refer to my ( still with no comments yet i posted last week ) :
http://www.apneaboard.com/forums/Thread-...at-is-this

Why is the machine increasing my jerks? without it i seem to be able to sleep little for few hours before the jerks start happenig with a vengence ( or the apnea i am not sure which now..)

Advice is appreciated
thanks
[Image: SqtPQ4D.png]

[Image: S6Pw13t.jpg]
Hi, Sleepyzzz

_ first ideas:  this detail looks a deep suddeenly flow-limited inspiration..... should more details would be available to the right (including other similar events), I would suspect you have aroused/awoke just after this. Such deep inspirations very often are followed by long exalation/groaning (look for this in your charts). 

_ my first suspicions/hypothesis on diagnosis: this would be catathrenias (plenty of literature available; tough thing!1; some says catathrenias would have been satisfactorily tamed by CPAP relatively high pressures; however there are arguing against) or PLMS mimic RDB ( see this: https://academic.oup.com/sleep/article/4...63/2731733; shoul be this/PLMS only medication coulld take care; Dopamine boosted? calcium channels-ligant like Pregabaline, etc)

_ would you please post some more details on chart with the attached waveforms?...so that I could eventually have more informartion/insights on your case?

_ your VAUTO parameters came from where? have you been on a systematic titrations as per RESMEd protocol?


all the best


Attached Files Thumbnail(s)
   
Mper
I am not a doctor. Nothing that I say here is medical advice
All my posts include only outcomes/learnings from my own/other therapies and medical literature



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#7
RE: Can someone tell me if they saw "this" before or know what is this?
(04-10-2020, 06:32 AM)crowtor Wrote: Hi

I also have laryngospasms at night when falling asleep, to combat the situation I have setup my Bipap as follows:

Easy breathe : off
Trigger : Very high
Cycle : high
rise time 500ms
ps : atleast 5
mask type : pediatric (this makes it even more sensitive)

Unfortunately theres no specific medication for this. A complete solution would be a tracheotomy.
I do take Magnesium orotate 1200mg daily on top of Cetirizine 10mg at night, Dunno if that helps much though.

Also I noticed that my body's reaction to a laryngospasm is very severe and if it happens i top it off with 2mg of propranolol to calm my racing heart after.

_ sorry crowtor: we post at same time. Looks interesting this possibility of laryngopasm..... I am going to study further!  Plan to go for some literature on this... have you any to suggest?

thanks
Mper
I am not a doctor. Nothing that I say here is medical advice
All my posts include only outcomes/learnings from my own/other therapies and medical literature



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#8
RE: Can someone tell me if they saw "this" before or know what is this?
Oddly enough, I had the same flow pattern last night. I believe it to be a "sniff" reflex while you are inhaling. I am experiencing some reaction to the pollen this year and find myself sniffing more than normal.
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#9
RE: Can someone tell me if they saw "this" before or know what is this?
hi, thanks for the reply, i posted many charts in my previous posts if you would like to look into them
it is not catathrenia, as i don't wake up from groaning, if you want to "see" what is happening check the youtube video of my sleep endoscopy showing the spasms.

what i know is that, it happens only when i am drifting to sleep, or when i am dreaming. also from the video and the graph, there is no "apnea" before it, i don't know if it "senses" an apnea and hence jerks and wake me up or if it is neurological. 
how would i know if it is respiratory or neurological ? 

also the machine aggravates it, why? is it the pressure on the arytenoids? i don't really understand.
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#10
RE: Can someone tell me if they saw "this" before or know what is this?
(04-10-2020, 06:32 AM)crowtor Wrote: Hi

I also have laryngospasms at night when falling asleep, to combat the situation I have setup my Bipap as follows:

Easy breathe : off
Trigger : Very high
Cycle : high
rise time 500ms
ps : atleast 5
mask type : pediatric (this makes it even more sensitive)

Unfortunately theres no specific medication for this. A complete solution would be a tracheotomy.
I do take Magnesium orotate 1200mg daily on top of Cetirizine 10mg at night, Dunno if that helps much though.

Also I noticed that my body's reaction to a laryngospasm is very severe and if it happens i top it off with 2mg of propranolol to calm my racing heart after.

thanks for this, i might try it. although i'm not even sure if my problem is apnea or something else. i know that the machine makes it worse and that the nights i was wearing the mask, my AHI was less then 1, but the jerks kept happenign and i kept waking up. 

did you try sleepiong without cpap ? do you sleep worse without?
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