Hi, nice to hear a positive story, thanks. The lowest point in my history was coming back from a narcolepsy conference by train. I was suddenly aware that every person on board was staring at me in bewilderment. I wasn’t aware that I’d slept. Then one of two elderly ladies sat accross the aisle said to the other “Should I tell him?” and her friend replied very quickly and assuredly “No!” I am still embarrassed. I get morning wood in public too when I go into REM. It’s very hard. Lol or cry?
thank you soooo much for makeing this video. I live in upstate NY and have severe Narcolepsy and Cataplexy, and have lost everything. I lost my buisness, my home, my wife and my 2 beautiful little girls because of a gross misunderstanding of this condition. Your video has given me strenght and insperation to not give up and has also inspired me to reach out to others. Thank you for shareing your courage with me and everyone else who suffers from this invisible illness.
Great, sounds like you have really found something that works well for you. It seems to take a renegade to be able to figure out what is happening in the brain! It cracks me up that sarcasm is what gets you. I am always dropped by things that overwhelm me. That sounds weird I know, but I am starting work in a hospital and seeing somethings just gets me every time.
Thank you for speaking up. It is so hard for people with narcolepsy because there is hardly any information out there about them. No one knows the real facts about it. My husband has it and we both struggle dealing with it. I get so tired of people making fun of him and calling him lazy because they don’t understand.
Hello, I was diagnosed with narcolepsy with cataplexy roughly 6 years ago. I’m on a cocktail of cymbalta and topamax. I still have what I call “sensations” sometimes if I’m tired and if I’m really tired I might have a full out episode but for the most part I’m great. Unless I try to be sarcastic and for some reason that drops me every time. LOL Anyway, I thank my renegade of a neurologist for coming up with this cocktail and wish others could get on it so they too could have the same freedom
Hello, just wanted to let you know that I have narcolepsy with cataplexy. I was diagnosed roughly 6 years ago. I’m on a cocktail of cymbalta and topamax which suprisingly controls my cataplexy really well. I still have what I call “sensations” from time to time or if I’m really tired I’ll have a full out spell (especially if I’m being sarcastic) but for the most part I do really well with this cocktail. I’m glad my neurologist came up with this. I don’t know why it’s not used by more.
My daughter has had excessive daytime sleepiness for 2 years now. We are still waiting for a sleep study. She is now complaining that when the teachers try and wake her up she can’t move at all….she came home crying the other day saying that the teachers were yelling at her, but she was paralyzed and couldn’t move. She also fell asleep while standing. I’m positive she has narcolepsy…all we can do is wait for a diagnosis now.
I was pleased and inspired by your video, I was diagnosed in 2005 with narcolepsy after YEARS of excessive daytime sleepiness. I explored every part of my life to figure it out - current meds, lifestyle, boredom…?? Finally at age 35 I went for the sleep study and was diagnosed. Thankfully I do not suffer the cataplexy or paralysis and usually feel the sleepiness coming on. I tried Provigil for some months but found it to mess with my hypoglycemia and made me jittery as well as very costly.
hey there….i have been in and out of sleep studies and no clear cut diagnosis has been made for me..i have 0% of 3 and 4th stage sleep..i have sleep paralysis, wicked daytime sleepiness which i struggle just to listen to someone talk..i dont fall asleep that often during the day but i feel like i just want to close my eyes all the time..it physically hurts to be tired all the time..they have suggested maybe epilepsy with a small case of narcolepsy..?? do you have email?
I just started Xyrem and also just started a blog and some videos last night… you can link to it from my channel here. Thanks for sharing your honest experiences and being so open! I am glad I came across this and will check out your other videos.
Great video. I’m so tired of searching narc. and getting these terrible 14 year old kids’ impressions. Anyhow I was diognosed when i was 21. Strict bedtime? All I want to do is party! But that denial catches up with you real fast. I’m so much better now that im getting treatment, I hope more people watch your video and get diognosed. Thanks Callie
My neurologist set me up for the night and day time study, again. I’m going to talk to my husband and try to get it done, this time. It’s just a money issue, although, 1000 dollars isn’t too bad.
You should have seen how serious my neurologist was. I was like…wow…
thank you so much for taking the time to make this video for the general public and those that have this condition. I had my 6th cat spell this afternoon out of 2years. So mine is mild but i have not discovered the trigger yet. I have had EDS for 7 years and had to endure peoples negative opionions of me because of it. Terrible on the self-esteem. Your willingness to share is a help to us all; people with N or without and their families. Thanks
Unfortunately, even if you had one in front of the doctor you would still have to do a sleep test. This is the only way to know for sure you are not having seizures-which is much more dangerous. The tests are expensive, but so is the medication. Health insurance has been really important to me in the past few years.
If you are constantly falling asleep even after a normal night of rest, you should probably see a sleep doctor. It could be sleep apnea or narcolepsy. Normal is very different for everybody, and it is very hard for me to say one way or the other without knowing your story.
I usually fall asleep the same times! Its always either 7-10am. On friday I fell asleep in the middle of a video and missed most of the notes! After 12noon I usually don’t fall asleep. I have fallen asleep in choir though. Is that normal?
Did you read that they finally found out that Narcolepsy is an Autoimmune Disease?
My doctor wants me to take a night and daytime study, but I can’t afford to pay 1000 dollars, right now. I understand how you feel though. I have day time sleepiness all of the time, hypnagogia hallucinations and sleep paralysis. I have mild cataplexy, once in a great while. I just wish I would have an attack in front of my doctor so I wouldn’t have to take the sleep test. LOL
Have you tried Provigil, adderrall, or any other stimulants?
You should go to a sleep disorders treatment center. There is hope
If one suffers from catalepsy, how’s sex?
Hi, nice to hear a positive story, thanks. The lowest point in my history was coming back from a narcolepsy conference by train. I was suddenly aware that every person on board was staring at me in bewilderment. I wasn’t aware that I’d slept. Then one of two elderly ladies sat accross the aisle said to the other “Should I tell him?” and her friend replied very quickly and assuredly “No!” I am still embarrassed. I get morning wood in public too when I go into REM. It’s very hard. Lol or cry?
thank you soooo much for makeing this video. I live in upstate NY and have severe Narcolepsy and Cataplexy, and have lost everything. I lost my buisness, my home, my wife and my 2 beautiful little girls because of a gross misunderstanding of this condition. Your video has given me strenght and insperation to not give up and has also inspired me to reach out to others. Thank you for shareing your courage with me and everyone else who suffers from this invisible illness.
Just hang in there, it will get better!
Great, sounds like you have really found something that works well for you. It seems to take a renegade to be able to figure out what is happening in the brain!
It cracks me up that sarcasm is what gets you. I am always dropped by things that overwhelm me. That sounds weird I know, but I am starting work in a hospital and seeing somethings just gets me every time.
Thank you for speaking up. It is so hard for people with narcolepsy because there is hardly any information out there about them. No one knows the real facts about it. My husband has it and we both struggle dealing with it. I get so tired of people making fun of him and calling him lazy because they don’t understand.
Hello, I was diagnosed with narcolepsy with cataplexy roughly 6 years ago. I’m on a cocktail of cymbalta and topamax. I still have what I call “sensations” sometimes if I’m tired and if I’m really tired I might have a full out episode but for the most part I’m great. Unless I try to be sarcastic and for some reason that drops me every time. LOL Anyway, I thank my renegade of a neurologist for coming up with this cocktail and wish others could get on it so they too could have the same freedom
Hello, just wanted to let you know that I have narcolepsy with cataplexy. I was diagnosed roughly 6 years ago. I’m on a cocktail of cymbalta and topamax which suprisingly controls my cataplexy really well. I still have what I call “sensations” from time to time or if I’m really tired I’ll have a full out spell (especially if I’m being sarcastic) but for the most part I do really well with this cocktail. I’m glad my neurologist came up with this. I don’t know why it’s not used by more.
i really would love to meet you. i was just diagnosed about 2 months ago and all i do is cry
Yikes, that is a very long time to go! Have you tried Nuvigil or Xyrem?
My daughter has had excessive daytime sleepiness for 2 years now. We are still waiting for a sleep study. She is now complaining that when the teachers try and wake her up she can’t move at all….she came home crying the other day saying that the teachers were yelling at her, but she was paralyzed and couldn’t move. She also fell asleep while standing. I’m positive she has narcolepsy…all we can do is wait for a diagnosis now.
I was pleased and inspired by your video, I was diagnosed in 2005 with narcolepsy after YEARS of excessive daytime sleepiness. I explored every part of my life to figure it out - current meds, lifestyle, boredom…?? Finally at age 35 I went for the sleep study and was diagnosed. Thankfully I do not suffer the cataplexy or paralysis and usually feel the sleepiness coming on. I tried Provigil for some months but found it to mess with my hypoglycemia and made me jittery as well as very costly.
hey there….i have been in and out of sleep studies and no clear cut diagnosis has been made for me..i have 0% of 3 and 4th stage sleep..i have sleep paralysis, wicked daytime sleepiness which i struggle just to listen to someone talk..i dont fall asleep that often during the day but i feel like i just want to close my eyes all the time..it physically hurts to be tired all the time..they have suggested maybe epilepsy with a small case of narcolepsy..?? do you have email?
I just started Xyrem and also just started a blog and some videos last night… you can link to it from my channel here. Thanks for sharing your honest experiences and being so open! I am glad I came across this and will check out your other videos.
Great video. I’m so tired of searching narc. and getting these terrible 14 year old kids’ impressions. Anyhow I was diognosed when i was 21. Strict bedtime? All I want to do is party! But that denial catches up with you real fast. I’m so much better now that im getting treatment, I hope more people watch your video and get diognosed. Thanks Callie
- This Video is Very Helpful .
Thank You ! i’m Fourteen & Also Have Narcolepsy . .
My neurologist set me up for the night and day time study, again. I’m going to talk to my husband and try to get it done, this time. It’s just a money issue, although, 1000 dollars isn’t too bad.
You should have seen how serious my neurologist was. I was like…wow…
thank you so much for taking the time to make this video for the general public and those that have this condition. I had my 6th cat spell this afternoon out of 2years. So mine is mild but i have not discovered the trigger yet. I have had EDS for 7 years and had to endure peoples negative opionions of me because of it. Terrible on the self-esteem. Your willingness to share is a help to us all; people with N or without and their families. Thanks
Unfortunately, even if you had one in front of the doctor you would still have to do a sleep test. This is the only way to know for sure you are not having seizures-which is much more dangerous. The tests are expensive, but so is the medication. Health insurance has been really important to me in the past few years.
If you are constantly falling asleep even after a normal night of rest, you should probably see a sleep doctor. It could be sleep apnea or narcolepsy. Normal is very different for everybody, and it is very hard for me to say one way or the other without knowing your story.
I usually fall asleep the same times! Its always either 7-10am. On friday I fell asleep in the middle of a video and missed most of the notes! After 12noon I usually don’t fall asleep. I have fallen asleep in choir though. Is that normal?
Did you read that they finally found out that Narcolepsy is an Autoimmune Disease?
My doctor wants me to take a night and daytime study, but I can’t afford to pay 1000 dollars, right now. I understand how you feel though. I have day time sleepiness all of the time, hypnagogia hallucinations and sleep paralysis. I have mild cataplexy, once in a great while. I just wish I would have an attack in front of my doctor so I wouldn’t have to take the sleep test. LOL
Thanks!