It’s taken years for me to get diagnosed with narcolepsy. I had symptoms as a child... when I was a cheerleader I would cheer for the team and get excited when they scored and I’d collapse... they thought I might not be eating the right things... I was always sorta sleepy. I also had bouts of sleep paralysis and hallucinations as a child... but after I joined the military it got so much worse... I originally was seen for mental health, I have been having sleep paralysis and awful sleep for years... I was diagnosed with depression, anxiety, and ptsd. I’m a combat medic in the Army and I’ve lost patients... I just felt like shit was going downhill. It was finally my psychiatrist that referred me to my neurologist who had me do a sleep study for sleep apnea and mslt... and after being diagnosed it was like a weight was lifted off of my shoulders... it’s hard to explain. As a medic I’m required to stay awake on medical coverages 12-24 hrs at a time and I’m now on a profile that says I can’t work more than 12 hours. The 24s were making everything just WORSE... I’m probably now getting medically discharged. I also was diagnosed with periodic leg movement syndrome.
I’m 15 and I had narcolepsy with cataplexy since I was 12 and I have lost a lot of friends because of this disorder hopefully one day they find a cure but for now guess I’ll just go with the flow
info at 25 minutes and thereafter, especially the temperature gradient (warm core, colder extremities to stay awake) was very much appreciated!!! it makes sense too, since i can't fall asleep if i have cold hands (a sign of stress).
I would’ve never known I had cataplexy until my doctor asked me the right question. Here I was thinking everyone got weak in the knees and couldn’t stand if they laughed real hard.
Most frustrating part of N is the lack of appropriate treatment with medication. 13:39 Sums it up. We are totally dependent on medication. However, almost all of them require special requirements (level 2 prescription in USA, very similar in Europe) and there is no dosage that fits all. It has to be customized to support patients. Most doctors don’t get this aspect. It is so extremely frustrating to fight for the only somewhat functional way to stay awake and be productive. Diagnosis is one thing, adequate treatment quite a different thing.
I had all the sleep studies, but the MSLT. Couldn’t afford it and didn’t need it. I have all the symptoms and once I got the diagnoses and put on Xyrem all my hallucinations, Voices in the head, severe Sleep attacks and constant rem Sleep slowed down a ton. Voices in the head are gone and I really don’t hallucinateanymore. I still need a stimulant during the day to function and currently can’t afford it.
I enjoyed this talk. Especially parts about disruption in nocturnal sleep, and cataplexy. Like the detail (and her motion to describe) the girl who would walk next to the hallway wall at school --before diagnosis--to cope with the effects of her cataplexy symptoms.
Good point about [outside / day] light helping with alertness and stabilizing your circadian rhythm. Being active outside helps with both for me. I'm privileged to live in Southern California where most of the days have a good amount of sunlight.
Old information 4 yrs old give us new treatments trials stem cell replacement histamine hope amphetamines for 13 + yrs major side effect non effective now memory loss shortness of life really bad for all organs Help
My family method needs something like medafonil but when it wears off at night, her body hurts all over. Anyone else have this side effect? and Adderol kept her awak so that she was awake for a week and ended up much worse off, it's been 8 years and keeps spirally worse.
I call it awake but no energy also......had where where woke up more tired the before sleep...can't get out of bed.....headaches like a pulling on brain......sleep many hours......
I have the sympthom of excessive sleepiness but I can't actually sleep , I get close to nREM sleep but I am still conscious and can't seem to get any sleep until my usual circadian rythm time about 10/11 PM . I don't hava catalepsy but the symthoms of sleepiness is acompanied with high pulse rate *(my cardiologist says I'm fine ), brain fog, though I can do IQ tests and other mental performance if I really want to , I have internal tremmors and sometimes hand muscle spams wich are involutary *( neurologist says I'm fine ) , I can exercise but I don't feel like it and I have red rashes on my neck and upper trunk that don't ich and they go away the next day or even in minutes. I tested for known alergies and I don't have any ,except NSAID's ( antiinflamatory nonsteroid drugs) wich I don't take when I am having an episode or otherwise,so I really don't get why they appear. Alergolosits say it's hives . I don't have "visions" or hallucinations but I am pretty worked up over these episodes wich can occur several days in a row and then stop for a month or more and reappear. It's a literal nightmare because I can't do anything let alone work when these happen and it's not just sleepiness, it mental fatigue like I haven't slept for days , although I slept 7 hours prior to this. It starts in the morning over 12 hours period continous until I sleep. I don't take drugs , I don't drink coffee , I don't drink ever alchohool , but I smoke cigs . Now I'm trying to quit, from 2 packs/day I managed to get to 1 pack.
Please help me all I know 8s I 2ant to sleep all the time I can't get enough sleep I have the c pap and move my legs all the time iam told and dream very real dreams all the time
All narcolepsy vids OLD 4yrs ago don't you have new treatments stem. Cell replacement or histamine uptake Still only amphetamines given by neurologist Give us New trials New information
It’s taken years for me to get diagnosed with narcolepsy. I had symptoms as a child... when I was a cheerleader I would cheer for the team and get excited when they scored and I’d collapse... they thought I might not be eating the right things... I was always sorta sleepy. I also had bouts of sleep paralysis and hallucinations as a child... but after I joined the military it got so much worse... I originally was seen for mental health, I have been having sleep paralysis and awful sleep for years... I was diagnosed with depression, anxiety, and ptsd. I’m a combat medic in the Army and I’ve lost patients... I just felt like shit was going downhill. It was finally my psychiatrist that referred me to my neurologist who had me do a sleep study for sleep apnea and mslt... and after being diagnosed it was like a weight was lifted off of my shoulders... it’s hard to explain. As a medic I’m required to stay awake on medical coverages 12-24 hrs at a time and I’m now on a profile that says I can’t work more than 12 hours. The 24s were making everything just WORSE... I’m probably now getting medically discharged. I also was diagnosed with periodic leg movement syndrome.
I’m 15 and I had narcolepsy with cataplexy since I was 12 and I have lost a lot of friends because of this disorder hopefully one day they find a cure but for now guess I’ll just go with the flow
Dr. Zee thank you for giving those with N a voice! Your lecture is very much on track for me. Especially in relation to cataplexy.
info at 25 minutes and thereafter, especially the temperature gradient (warm core, colder extremities to stay awake) was very much appreciated!!! it makes sense too, since i can't fall asleep if i have cold hands (a sign of stress).
I would’ve never known I had cataplexy until my doctor asked me the right question. Here I was thinking everyone got weak in the knees and couldn’t stand if they laughed real hard.
Most frustrating part of N is the lack of appropriate treatment with medication.
13:39 Sums it up. We are totally dependent on medication. However, almost all of them require special requirements (level 2 prescription in USA, very similar in Europe) and there is no dosage that fits all. It has to be customized to support patients.
Most doctors don’t get this aspect. It is so extremely frustrating to fight for the only somewhat functional way to stay awake and be productive.
Diagnosis is one thing, adequate treatment quite a different thing.
You are an excellent teacher, Dr. Zee. Thank you.
I had all the sleep studies, but the MSLT. Couldn’t afford it and didn’t need it. I have all the symptoms and once I got the diagnoses and put on Xyrem all my hallucinations, Voices in the head, severe Sleep attacks and constant rem Sleep slowed down a ton. Voices in the head are gone and I really don’t hallucinateanymore. I still need a stimulant during the day to function and currently can’t afford it.
Love this doctor!!
I enjoyed this talk. Especially parts about disruption in nocturnal sleep, and cataplexy. Like the detail (and her motion to describe) the girl who would walk next to the hallway wall at school --before diagnosis--to cope with the effects of her cataplexy symptoms.
Commenting as I continue watching--I would like to hear more about psychosocial & work aspects/coping.
Good point about [outside / day] light helping with alertness and stabilizing your circadian rhythm. Being active outside helps with both for me. I'm privileged to live in Southern California where most of the days have a good amount of sunlight.
Old information 4 yrs old give us new treatments trials stem cell replacement histamine hope amphetamines for 13 + yrs major side effect non effective now memory loss shortness of life really bad for all organs Help
My family method needs something like medafonil but when it wears off at night, her body hurts all over. Anyone else have this side effect? and Adderol kept her awak so that she was awake for a week and ended up much worse off, it's been 8 years and keeps spirally worse.
I call it awake but no energy also......had where where woke up more tired the before sleep...can't get out of bed.....headaches like a pulling on brain......sleep many hours......
I have the sympthom of excessive sleepiness but I can't actually sleep , I get close to nREM sleep but I am still conscious and can't seem to get any sleep until my usual circadian rythm time about 10/11 PM . I don't hava catalepsy but the symthoms of sleepiness is acompanied with high pulse rate *(my cardiologist says I'm fine ), brain fog, though I can do IQ tests and other mental performance if I really want to , I have internal tremmors and sometimes hand muscle spams wich are involutary *( neurologist says I'm fine ) , I can exercise but I don't feel like it and I have red rashes on my neck and upper trunk that don't ich and they go away the next day or even in minutes. I tested for known alergies and I don't have any ,except NSAID's ( antiinflamatory nonsteroid drugs) wich I don't take when I am having an episode or otherwise,so I really don't get why they appear. Alergolosits say it's hives . I don't have "visions" or hallucinations but I am pretty worked up over these episodes wich can occur several days in a row and then stop for a month or more and reappear. It's a literal nightmare because I can't do anything let alone work when these happen and it's not just sleepiness, it mental fatigue like I haven't slept for days , although I slept 7 hours prior to this. It starts in the morning over 12 hours period continous until I sleep. I don't take drugs , I don't drink coffee , I don't drink ever alchohool , but I smoke cigs . Now I'm trying to quit, from 2 packs/day I managed to get to 1 pack.
I’ll have to watch again. Am not a Dr so not as familiar as her audience seems to be.
I litterly took notes lol ps going vegan and less sugar helped a lot. gluten free as much as i can and eating more whole foods :-)
I could sleep 20 hours a day I'm looking forward to dying too so I can sleep I think I may have a problem
Feeling alone...no one to tell ..no one to understand....
What are your thoughts on an upcoming once nightly sodium oxybate?
20:47 WHAT??? Wait I never heard this before! I have had 2 transplants and am waiting for a third as the 2nd got killed off from septic s hock!
Please help me all I know 8s I 2ant to sleep all the time I can't get enough sleep I have the c pap and move my legs all the time iam told and dream very real dreams all the time
All narcolepsy vids OLD 4yrs ago don't you have new treatments stem. Cell replacement or histamine uptake Still only amphetamines given by neurologist Give us New trials New information