Dr. Kiran Maski presented “IMPACT-Looking Beyond the Clinical Symptoms of Narcolepsy” during our WUN IMPACT: Looking Beyond the Symptoms of Narcolepsy Webinar
Very informative! I wish this information had been available way back when I was first diagnosed in 1975. I have been dealing with this on my own and misunderstood for most of my life.
Even now, I just graduated a few years back. Sadly I was undiagnosed/misdiagnosed for my whole school period and have taken 5 extra years to be able to gratuate. These things could have helped a lot!
Growing up, I was an above average student It took me 9 years to get my college degree. I would get part way through a semester and then couldn't learn because I couldn't concentrate. I would drop out and start over again the next semester. I finally made it through once I began taking Ritalin.
I am 45, had Narcolepsy since I was 14, I have all the symptoms, I have been left to manage on my own, I am single living on my own, I am never able to hold a full time job, cannot get treatment because I dont have insurance and my income does not allow me to get treatment, I have managed with whatever natural treatment I can find, I do struggle with food, because when I get sleepy it triggers me to want to eat to wake back up, I have not found much understanding in my life, I cant travel far, work full time, get treatment, I have went to college but taken classes 3 or 4 times because of my memory issues. I struggle with short term memory loss. I never finished my 4 year degree. I stay positive however, I am glad that you are looking at the other things, they truly are debilitating. Also motivation is non existent, that pleasure that you get as a reward does not exist.
Yes. This disorder destroys potential to make a living. Which in the US means you won’t have health insurance. The new drugs they have now are useless without insurance. They prices are atrocious.
We want to apologize for the long delay in our response. We are a small organization and were going through a lot of changes in staffing when you had commented. If you are looking for resources, we are always here to support you through those and can be reached at info@wakeupnarcolepsy.org It also might be of interest to you that we have weekly online support groups that provide understanding communities for people with Narcolepsy. More information can be found here: heypeers.com/organizations/2 We hope that things have improved since this comment. Please let us know if we can help in any way.
I'm so glad that I found this video. Many of these things have not been addressed by my doctor or the sleep specialist that I've seen so far. The Cognitive issues are a big one for me, because I know the issues that I deal with, which I didn't deal with prior to symptoms starting/worsening during my 30's. I have issues with looking at my things that were moved into a one bedroom condo, for example, and being able to get all of it organized, put away, etc..., especially since it's mixed in with a full condo of someone else's stuff. I never had an issue with this when I was younger. I can get things done at other people's homes, so why can't I seem to get my own stuff done? After watching this, I'm going to see if I can hire someone to do it with/for me. I'm done with beating myself up for not being able to do it, and get it done. I have my own full-time home and pet care business. I can accomplish things, but I can't seem to see the trees for the forest, if that makes any sense? I don't know where to start, how to get started, how to not be sidetracked by everything else that needs to be done that's all around me, and not being overwhelmed by it. I experience the memory issues, not being able to find a word, and thinking of it later. This neurological disorder has profoundly affected my life.
We want to apologize for the long delay in our response. We are a small organization and were going through a lot of changes in staffing when you had commented. We want you to know that we really appreciate you sharing your story and are always here if you need direction to any resources.
13:29 obesity is correlated to sleep deprivation: "Studies showed that experimental sleep restriction was associated with increased levels of ghrelin, salt retention and inflammatory markers as well as decreased levels of leptin and insulin sensitivity." Sleep deprivation and obesity in adults: a brief narrative review, 2018 Sleep deprivation is also associated with hypertension 16:20 Sleep Loss and Hypertension: A Systematic Review, 2018 Sleep debt (cumulative loss of sleep) results in same symptoms as sleep deprivation. 20:42 children with less than 8h sleep were 14 times more likely to develop adhd. Early sleep deprivation and attention-deficit/hyperactivity disorder, 2019 23:26 low vitamin D has been linked to sleep disorders, early puberty, and adhd. In other words, narcolepsy has the exact same comorbidities as sleep deprivation.
Just diagnosed with type 2 in January at the age of 48. Also, in the last year, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Hypothyroidism and Chronic Migraines.
I’m getting a sleep study for it. I might have type 1 because I’ve experience the cataplexy and hallucinations and sleep attacks etc and I saw a sleep specialist and my symptoms lined up to narcolepsy so now I’m getting a study next week. I hope It’s accurate so I can get treatment
Could it simply be that the bodies of patients with narcolepsy aren't using energy sources efficiently and are thus triggered to take in more calories to boost energy/wakefulness?
We are so sorry to hear about this. We want you to know that you are not alone and have online support groups available if you are interested in connecting with other people living with Narcolepsy: heypeers.com/organizations/2 Please visit our website for more resources or contact us at info@wakeupnarcolepsy.org. Thank you for sharing.
Good question! There might be something on American Heart Association's website. Here is the information they have on heart health and sleep disorders: heart.org/sleepdisorders
@@WakeUpNarcolepsy another question too that I just thought of, do any other conditions cause hypnogogic hallucinations? (Not including sleep paralysis as I've not had that)
Very informative! I wish this information had been available way back when I was first diagnosed in 1975. I have been dealing with this on my own and misunderstood for most of my life.
Even now, I just graduated a few years back. Sadly I was undiagnosed/misdiagnosed for my whole school period and have taken 5 extra years to be able to gratuate. These things could have helped a lot!
Growing up, I was an above average student It took me 9 years to get my college degree. I would get part way through a semester and then couldn't learn because I couldn't concentrate. I would drop out and start over again the next semester. I finally made it through once I began taking Ritalin.
I am 45, had Narcolepsy since I was 14, I have all the symptoms, I have been left to manage on my own, I am single living on my own, I am never able to hold a full time job, cannot get treatment because I dont have insurance and my income does not allow me to get treatment, I have managed with whatever natural treatment I can find, I do struggle with food, because when I get sleepy it triggers me to want to eat to wake back up, I have not found much understanding in my life, I cant travel far, work full time, get treatment, I have went to college but taken classes 3 or 4 times because of my memory issues. I struggle with short term memory loss. I never finished my 4 year degree. I stay positive however, I am glad that you are looking at the other things, they truly are debilitating. Also motivation is non existent, that pleasure that you get as a reward does not exist.
Yes. This disorder destroys potential to make a living. Which in the US means you won’t have health insurance. The new drugs they have now are useless without insurance. They prices are atrocious.
We want to apologize for the long delay in our response. We are a small organization and were going through a lot of changes in staffing when you had commented. If you are looking for resources, we are always here to support you through those and can be reached at info@wakeupnarcolepsy.org It also might be of interest to you that we have weekly online support groups that provide understanding communities for people with Narcolepsy. More information can be found here: heypeers.com/organizations/2 We hope that things have improved since this comment. Please let us know if we can help in any way.
I'm so glad that I found this video. Many of these things have not been addressed by my doctor or the sleep specialist that I've seen so far. The Cognitive issues are a big one for me, because I know the issues that I deal with, which I didn't deal with prior to symptoms starting/worsening during my 30's. I have issues with looking at my things that were moved into a one bedroom condo, for example, and being able to get all of it organized, put away, etc..., especially since it's mixed in with a full condo of someone else's stuff. I never had an issue with this when I was younger. I can get things done at other people's homes, so why can't I seem to get my own stuff done? After watching this, I'm going to see if I can hire someone to do it with/for me. I'm done with beating myself up for not being able to do it, and get it done. I have my own full-time home and pet care business. I can accomplish things, but I can't seem to see the trees for the forest, if that makes any sense? I don't know where to start, how to get started, how to not be sidetracked by everything else that needs to be done that's all around me, and not being overwhelmed by it. I experience the memory issues, not being able to find a word, and thinking of it later. This neurological disorder has profoundly affected my life.
We want to apologize for the long delay in our response. We are a small organization and were going through a lot of changes in staffing when you had commented. We want you to know that we really appreciate you sharing your story and are always here if you need direction to any resources.
13:29 obesity is correlated to sleep deprivation:
"Studies showed that experimental sleep restriction was associated with increased levels of ghrelin, salt retention and inflammatory markers as well as decreased levels of leptin and insulin sensitivity."
Sleep deprivation and obesity in adults: a brief narrative review, 2018
Sleep deprivation is also associated with hypertension 16:20
Sleep Loss and Hypertension: A Systematic Review, 2018
Sleep debt (cumulative loss of sleep) results in same symptoms as sleep deprivation.
20:42 children with less than 8h sleep were 14 times more likely to develop adhd.
Early sleep deprivation and attention-deficit/hyperactivity disorder, 2019
23:26 low vitamin D has been linked to sleep disorders, early puberty, and adhd.
In other words, narcolepsy has the exact same comorbidities as sleep deprivation.
This is an absolute gem of a video among the hundreds of useless 2 min clips on narcolepsy flooding youtube
Just diagnosed with type 2 in January at the age of 48. Also, in the last year, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Hypothyroidism and Chronic Migraines.
I’m getting a sleep study for it. I might have type 1 because I’ve experience the cataplexy and hallucinations and sleep attacks etc and I saw a sleep specialist and my symptoms lined up to narcolepsy so now I’m getting a study next week. I hope It’s accurate so I can get treatment
Never know when it's going to happen. Can't drive iam always fatigued. Iam not obese. Very thin.
I don’t think I have narcolepsy but I do use food to stay awake when I’m feeling sleepy, maybe that’s one reason for the overeating???
When you can't work because you are sleeping . It is embarrassing. Yes
31:56 Could we have this link on UA-cam too, please?
Could it simply be that the bodies of patients with narcolepsy aren't using energy sources efficiently and are thus triggered to take in more calories to boost energy/wakefulness?
It sure FEELS that way
And the Braun fog I feel so stupid.
We are so sorry to hear about this. We want you to know that you are not alone and have online support groups available if you are interested in connecting with other people living with Narcolepsy: heypeers.com/organizations/2 Please visit our website for more resources or contact us at info@wakeupnarcolepsy.org. Thank you for sharing.
I love the info. I only feel asleep twice watching this! 10/10 will watch again
So you don’t need psychiatric meds, it’s the narcolepsy
This is good news.
Anything on hypotension?
Good question! There might be something on American Heart Association's website. Here is the information they have on heart health and sleep disorders: heart.org/sleepdisorders
@@WakeUpNarcolepsy another question too that I just thought of, do any other conditions cause hypnogogic hallucinations? (Not including sleep paralysis as I've not had that)
@@anthapersephone7311 That's an interesting question. We would advise you to discuss it with your healthcare provider to learn more!