Can someone tell me if they saw "this" before or know what is this?

[sleepyzzzz]

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

[chris_lucy@live.com]

Hello, is your Alaxo still for sale?

[chris_lucy@live.com]

I believe i have this very issue (yet lack of belief ). Did your sleep quality deteriorate almost suddenly?

[Miss Emerita]

In your place, I would consult a different ENT to review your history of symptoms and procedures and offer a second opinion. You've had a lot of work done on you but still have a significant sleep problem. Time for a fresh medical perspective?

[Julie]

To Chris L--- Please start your own thread, read what orig. poster said re timeline and uh... Alaxo?

[chris_lucy@live.com]

To Julie --- What are you, his private consultant? Im ONLY trying to engage with sleepyzzzz. In regards to "um uh Alaxo" its a product that sleepyzzzz has used recently

[DreamDiver]

First, I'm not a doctor, so I'm just spouting nonsense off the top of my head in hopes that it could spur you into a more useful direction in finding a doctor or doctors... It almost sounds like you need a doctor team, someone with competence in throat spasms from a neurological stand point and someone who with competence in throat spasms from an ear-nose-throat stand point, maybe even someone with an understanding from a gut-nervous standpoint. I wonder if this isn't some sort of unusual seizure connected to your vagus nerve or one of the other weirdly looped nerves in that region. Maybe something's pushing against a nerve in that region that's causing the spasm, or something relaxes and sends a signal of relief that you register as pain. Rather than have each different doctor pawn you off to another specialist saying "it's not my specialty", get them in one room and make them work together to solve the damned puzzle.

[bwexler]

I am not a doctor and I don't know nearly as much as many of the folks here.
My observation is you may be very impatient. Your timeline suggests, especially in the early stages that you may not have allowed adequate time for the treatments to have a beneficial effect. At this point your surgeries have modified your physical structure to the point you may have to start from scratch and give things a chance to work before you move on.
From what I have seen here, many folks take months to dial in PAP therapy.
I don't know if you asked for help here or if you acted on any suggestions made.

[JD56]

Sleepy, we are twins with the symptoms and treatment path. I have completed 50% or so of the treatments you have listed. My condition currently, same as you, no remedy so far. I just completed a visit to University of Washington Hospital(otolaryngology dept) for a doctor visit, they want to do UPPP on me. They have seen the Epiglottis also being an issue for some people with this situation.

Question for you, in your opinion, why did they proceed with the throat surgeries if most likely from reading your narrative, they could not confirm the cause/issue during the DISE(drug induced sleep endoscopy) part of the surgery process?

The reason I ask, the surgeon in my situation will not proceed “hoping” the surgery will work positively, unless he can see during the DISE part of the procedure the issue he suspects.

Thank you in advance.

Best,

JD56

[khauser]

Zombie thread
JD56 you are replying to thread last used in April. The OP has not been active since the end of March.