Hopefully others in the field will chime in and concur with this finding and that this will hopefully open the door to new discoveries..
N2 and suffer from severely fragmented sleep (please check this detailed prior thread for more of my background info if you're not too tired :). 'Maybe sleep 1-3 hours a night tops and wake up a million times even in between those scant hours. Short/ long naps are a no no since I either wake up tired and with a headache after a short one or will never be able to sleep that night at all after a long one since I've already used up my sleep quota for the day. I'll then have to pay for it by having to miserably wait until the next day to get any resemblance of sleep return to my system once again.
'Recently finally tried Lumryz a few months back which took 2 months of battling my prior ins company, CVS Caremark and complete incompetence from my neurologist's office before getting approval through their patient assistance program. Sadly ended up not working for me at all after slowly titrating to the max dosage making me even groggier than normal when waking up after 2-3 hours max and unable to fall back asleep afterwards. This really broke me I won't lie as I was so hopeful after battling to get access to it and end up having it not work out at all in the end.
I have to this point tried Ambien, Melatonin, Lunesta, Trazadone, baclofen/ Doxepin combo, Xywav and most recently Lumryz. I've also tried various types of sleep gummies over the last 2-3 years all to no avail. Xyrem will be my last oxybate that I have yet to try it but I'm just not ready to do so for now until i can get myself mentally in a good place to tackle the arduous journey to get it approved (let alone prepare myself and deal with the outcome if it ends up just like the others). Maybe early next year..
In the mean time I'm scheduled to see my useless sleep neurologist whom at our last encounter would not prescribe Baclofen for me because she had never heard of it & believed that it would never work even after I explained its off label use and citing journals. She ended up doing so after I physically printed out the studies and handed it off to her at a subsequent appointment scheduled just for this. I'm really looking forward to her "I told you so" speech as you can imagine tomorrow... yaaaye :)
Spent some time with the family this past weekend.. There was a tv show playing (don't even know what it was) in the background with everyone talking when I looked up and saw a scene where a patient woke up from a 5 year comma.. I inexplicably randomly blurted out 'Wonder what it feels like sleeping uninterrupted for 5 years? Do you think it was restful for them?' They all turned silent- turned towards the tv and after catching up with the scene looked at me like I had completely lost my mind. Obviously as you can imagine, it turned into a huge blowup where I explained I was just asking a hypothetical and wasn't wishing this on myself and they responded saying that I shouldn't have brought it up let alone think it. As I was starting my day the next morning staring at the mirror, I looked at my relatively for my age young looking 45 year old face with the exception of my deeply and normal at this point 70 year old looking perpetual red sleepless eyes with prolapsed eye bags and overall dark complexion all around it that gets worse every day since I was given this gift approx 20 years ago. F**k ya! I would definitely give anything for a 1 year (not 5 :) uninterrupted deeply restful and restorative sleep whether it's a comma or anything else one wants to call it that's socially acceptable by normal standards by the majority of people who have no clue what we suffer and go through every second every day. That 1 year's worth of delicious restorative sleep would guarantee absolute nirvana and will future proof me for the rest of my life.
My apologies since i didn't mean to turn this into a novel. I'm really reeling right now while I'm writing this. I truly wouldn't wish this condition on my worst enemy... I guess if there's any meds I can ask the doc tomorrow to prescribe that you think I should try- I'm all ears. I've anecdotally heard amitriptyline mentioned once or twice here?? Any others left field or out there fringe meds I can ask about please leave them in the comments. Maybe I can leave with 3 or 4 prescriptions that I can try for the next 4-5 months until I go back for Xywav sometime early next year.
It's been an unimaginably bad couple of days...Thanks for sticking around to the end!
https://www.youtube.com/watch?v=dqnYc7_uzM8
Looks kinda painful. Anyone try this and found it to be helpful? If so how long did it work for you? My dermatologist said they charge $1000 per session and my insurance won't cover any of it. I workout and because of this my derma said it might only last 2 months or so...:(
Trust me everyone.. The cure is only 5 years away :)
Scheduled for a colonoscopy tomorrow and am absolutely scared that the anesthesia might not work on me. My type 2 narcolepsy has been resistant to Xywav and more recently Lumryz with only Xyrem being the only remaining one that I have yet to try. My body gets used to oxybates real quick with no rhyme or reason. My main symptom is fragmented sleep and am one of those rare narcoleptics that can wakeup easily with even the slightest of sounds.
I've had local (injectable) anesthesia during dental procedures and never had any issues but to this day have never had a full on anesthesia administered for any other reason.
Should I just cancel and do it when I'm more comfortable in the future? I'm only having to do this since I just reached the fun age where you need to get it done once a decade so no real emergency. Or should I just ask the anesthesiologist just to keep a close eye out on me and make sure to put me down right away with more meds if I happen to wake up?
How does one even have this conversation and not sound insane?
TIA!
Biggest question is if it worked for you how long were you sweat free before you had to go back and keep repeating it?