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?