I was diagnosed with Narcolepsy August 21st. After being treated with medication I finally have my life back. I am only 20 and it took me 6 years to get a correct diagnosis. I was diagnosed with depression, ADHD, anxiety. Now that I am doing better I am actually going off my Effexor. Thank you doctors for talking about Narcolepsy. It needs to be talked about!
Diagnosed with Narcolepsy since last March. Best way to describe it is, imagine being awake for 5 days straight and going about your day like that and never feeling any relief. Sure I take Armodanfinil and it helps, but not all day and it's not a cure all. On top of exhaustion, you wake up all the time at night, have super vivid dreams that seem real, and yes hallucinations like the woman described. Also extremely poor memory and cataplexy. Even things like bringing in groceries from the car is extremely tiring. People with narcolepsy aren't lazy, we just have zero energy.
Her experience with narcolepsy describes me perfectly. I'm not diagnosed but I have severe muscle weakness, muscle loss sometimes, extreme day time sleepiness, nightmares, insomnia, hallucinations, and sleep paralysis and sometimes automatic behaviors.
Quinn Johnson see a sleep specialist and do the mslt sleep study. Once diagnosed you can get treatment. It really improves your quality of life once symptoms are treated with meds.
I've collapsed from cataplexy more times than I can count. I once fell asleep in an empty bathtub. But the worst symptom I have is brain fog, which is where my brain feels like Dial-up internet. I get sleepy, irritable, my speech gets slurred, and my entire body feels like it's underwater. I'm so glad that there's finally awareness to this awful disease.
WOW, 10 years?¿? i think i have narcolepsy. since i was very young. i have cataplexy during the day and that vivid dreams during the day haunting i maybe have had some hallucination about noises , like calling my name and nobody did and there's no one. What can i do?
Adenosine Tri Phosphat (ATP) is energy for our neurons, once depleted it is transformed into ADP. When sensors in our brain feel enough ADP it triggers sleepiness to we can replenish our ATP energy with glucose and phosphate. Caffein is a ADP-sensor blocker and this is how it helps us stay awake. With narcolepsy there might be something wrong with ADP-sensors or with ATP production.
Muuip actually it is because the neurons that create orexin AKA hypocretin in the hypothalamus are destroyed by the immune system. By the time cataplexy appears, We have 10% of the neurons that create the wake me up hormone that most healthy humans have. Since it is brain damage, it isn’t curable but only gets worse from future flare ups.
I was diagnosed with type one narcolepsy a few years ago. After being on a regular medication routine everything seemed to be going well...until recently. Now I've changed meds and suddenly I have been feeling incredibly sick. My cognitive skills are seriously lacking right now. Also, because my cataplexy is mostly triggered by fear (I'm absolutely PETRIFIED of thunder) and stress...living in Moore, Oklahoma is definitely NOT my idea of fun. I haven't been able to return to work in a few days now and it's really frustrating. Hopefully I still actually have a job to return to. Tornado season is literally the worst time for me... I can't wait until these storms are over and I don't have to worry so much about the cataplexy.
How do I get a hold of the doctors on the show. My sister needs help. She loves to cook and was once an employee at hard rock in Hollywood as a cook. She loves to cook, but as soon as she injured herself at work she was not able to work, she has a broken tendon on her left foot. It is always causing her pain and has messed with her walking that has resulted in her knee being a compensation to her foot for her to walk. She needs help bad. She wants her dream job back. Can somebody give me info on how to contact the doctors?
You can go onto their website www.thedoctorstv.com to contact them. They have a section that has various questions that people can choose from to tell their stories and reach out for help from the doctors on the show.
Just like any disorder the symptoms vary from person to person. I have very mild narcolepsy and from the gathered information I had before I was diagnosed I would’ve never thought it was. The main reason I went along with it was the guarantee that the neurologic examination would show something wrong with me in one way or another.
I highly suspect that my husband has Narcolepsy. He keeps making excuses not to see a doctor though. The one time he did, the doc said "I don't think it's Narcolepsy, I think it's sleep apnea.) Here are the reasons I think he has Narcolepsy: 1. He can fall asleep at the drop of a hat. We can't watch a movie without him falling asleep. 2. He can fall asleep as soon as his head hits the pillow, and I have seen him enter REM sleep within 5 minutes of falling asleep. 3. He is CONSTANTLY extremely tired. It doesn't matter if he slept 2 hours or 13 hours. He is still exhausted. 4. His grandmother had Narcolepsy (with cataplexy). She would faint when she had intense emotions. (he doesn't have that though, or at least not that I have noticed.) 5. If he is up and doing stuff, he is fine. As soon as he sits down and starts to relax, he falls asleep. Doesn't matter what time of the day or if he even did anything strenuous, he WILL start nodding off. We can't just sit and cuddle and watch a movie. He will fall asleep not long into it. He doesn't understand why I can't just "let him sleep and finish the movie". Him falling asleep just ruins everything! I'm suppose to enjoy cuddling and a movie while he is snoring in my ear? I've dealt with this for 9 years and will continue to, but GOD I wish he would just see a damn doctor!!!!!
He donates plasma, and always had issues with low iron. I had him start taking iron pills. He doesn't have an issue with low iron when he donates, but he is still tired all the time. He was put on anti-depressents (family inherited chemical imbalance). He was a totally different person for all of 4 days. Energetic, (annoyingly) perky, not tired at all. Then he went back to his normal tired self. They even doubled the anti-depressent dose, and it didn't help.
Kristen it sounds like SLEEP APNEA . I have it and had everything happening to me you say your husband had. My husband says I fall asleep faster than anyone he's ever seen. I am ok up going, but if I sit down I was gone. I now sleep on a CPAP MACHINE . I used to sleep all the time, but the thing was I was never really sleeping. You don't get restful sleep with SLEEP APNEA that's why your always tired and can fall asleep so easy. Does he snore? Does he quit breathing? Is he overweight? These are some big signs.
1968catrece He does snore, especially laying on his back. He is a bit overweight, but not bad. I have insomnia, so I've layed there for many hours and I haven't noticed him quit breathing. I keep pestering him to see a doctor, but he says "Yeah I know I need to" but doesn't actually do it. It's making me really mad!
I was diagnosed with Narcolepsy August 21st. After being treated with medication I finally have my life back. I am only 20 and it took me 6 years to get a correct diagnosis. I was diagnosed with depression, ADHD, anxiety. Now that I am doing better I am actually going off my Effexor. Thank you doctors for talking about Narcolepsy. It needs to be talked about!
Diagnosed with Narcolepsy since last March. Best way to describe it is, imagine being awake for 5 days straight and going about your day like that and never feeling any relief. Sure I take Armodanfinil and it helps, but not all day and it's not a cure all.
On top of exhaustion, you wake up all the time at night, have super vivid dreams that seem real, and yes hallucinations like the woman described. Also extremely poor memory and cataplexy. Even things like bringing in groceries from the car is extremely tiring. People with narcolepsy aren't lazy, we just have zero energy.
Thank you for sharing this! The more people informed the better. There is such a huge misunderstanding about the disorder
Her experience with narcolepsy describes me perfectly. I'm not diagnosed but I have severe muscle weakness, muscle loss sometimes, extreme day time sleepiness, nightmares, insomnia, hallucinations, and sleep paralysis and sometimes automatic behaviors.
I'm always tired and nothing helps. Today I slept 13 hours but it feels like I've been awake for 13 days.
Quinn Johnson see a sleep specialist and do the mslt sleep study. Once diagnosed you can get treatment. It really improves your quality of life once symptoms are treated with meds.
Hell nah! I’ve seen so many doctors and they labeled me as depressed 🙄
My Italian rage came out multiple times LOL!
Dr did me over & over again. But it's been 12yr or more & I still have all the symptoms they state
That sleep doctor is way too happy.
Amphetamines
I've collapsed from cataplexy more times than I can count. I once fell asleep in an empty bathtub. But the worst symptom I have is brain fog, which is where my brain feels like Dial-up internet. I get sleepy, irritable, my speech gets slurred, and my entire body feels like it's underwater. I'm so glad that there's finally awareness to this awful disease.
Elizabeth Johnson I know exactly how you feel. Before diagnosis I collapsed in my washing machine while doing laundry.
Hahaha! I am ALWAYS sleepy! And cataplexy feels like a coma for 5-10 minutes.
I have secondary narcolepsy from brain damage. I can assure you, I need way more sleep than most people.. but it's not a usual case.
WOW, 10 years?¿? i think i have narcolepsy. since i was very young. i have cataplexy during the day and that vivid dreams during the day haunting i maybe have had some hallucination about noises , like calling my name and nobody did and there's no one. What can i do?
Adenosine Tri Phosphat (ATP) is energy for our neurons, once depleted it is transformed into ADP. When sensors in our brain feel enough ADP it triggers sleepiness to we can replenish our ATP energy with glucose and phosphate. Caffein is a ADP-sensor blocker and this is how it helps us stay awake. With narcolepsy there might be something wrong with ADP-sensors or with ATP production.
Muuip actually it is because the neurons that create orexin AKA hypocretin in the hypothalamus are destroyed by the immune system. By the time cataplexy appears, We have 10% of the neurons that create the wake me up hormone that most healthy humans have. Since it is brain damage, it isn’t curable but only gets worse from future flare ups.
Thank you doctors sadly I suffer from this 😥.Im 32 years old
I was diagnosed with type one narcolepsy a few years ago. After being on a regular medication routine everything seemed to be going well...until recently. Now I've changed meds and suddenly I have been feeling incredibly sick. My cognitive skills are seriously lacking right now. Also, because my cataplexy is mostly triggered by fear (I'm absolutely PETRIFIED of thunder) and stress...living in Moore, Oklahoma is definitely NOT my idea of fun. I haven't been able to return to work in a few days now and it's really frustrating. Hopefully I still actually have a job to return to. Tornado season is literally the worst time for me... I can't wait until these storms are over and I don't have to worry so much about the cataplexy.
How do I get a hold of the doctors on the show. My sister needs help. She loves to cook and was once an employee at hard rock in Hollywood as a cook. She loves to cook, but as soon as she injured herself at work she was not able to work, she has a broken tendon on her left foot. It is always causing her pain and has messed with her walking that has resulted in her knee being a compensation to her foot for her to walk. She needs help bad. She wants her dream job back. Can somebody give me info on how to contact the doctors?
try their social media
You can go onto their website www.thedoctorstv.com to contact them. They have a section that has various questions that people can choose from to tell their stories and reach out for help from the doctors on the show.
plugger.thedoctorstv.com/be-on-the-show
I don't know why this is hard to diagnosis. The symtpoms and the way it looks is kind of out there imo. And that's coming from a narcoleptic.
Just like any disorder the symptoms vary from person to person. I have very mild narcolepsy and from the gathered information I had before I was diagnosed I would’ve never thought it was. The main reason I went along with it was the guarantee that the neurologic examination would show something wrong with me in one way or another.
Thks Docs
Please Doctors talk about POTS (Postural orthistatc tachycardia syndrome) and Reactive Hypoglycemia.
This shit is hell😔😰😭😭😭
I highly suspect that my husband has Narcolepsy. He keeps making excuses not to see a doctor though. The one time he did, the doc said "I don't think it's Narcolepsy, I think it's sleep apnea.) Here are the reasons I think he has Narcolepsy:
1. He can fall asleep at the drop of a hat. We can't watch a movie without him falling asleep.
2. He can fall asleep as soon as his head hits the pillow, and I have seen him enter REM sleep within 5 minutes of falling asleep.
3. He is CONSTANTLY extremely tired. It doesn't matter if he slept 2 hours or 13 hours. He is still exhausted.
4. His grandmother had Narcolepsy (with cataplexy). She would faint when she had intense emotions. (he doesn't have that though, or at least not that I have noticed.)
5. If he is up and doing stuff, he is fine. As soon as he sits down and starts to relax, he falls asleep. Doesn't matter what time of the day or if he even did anything strenuous, he WILL start nodding off. We can't just sit and cuddle and watch a movie. He will fall asleep not long into it. He doesn't understand why I can't just "let him sleep and finish the movie". Him falling asleep just ruins everything! I'm suppose to enjoy cuddling and a movie while he is snoring in my ear? I've dealt with this for 9 years and will continue to, but GOD I wish he would just see a damn doctor!!!!!
He donates plasma, and always had issues with low iron. I had him start taking iron pills. He doesn't have an issue with low iron when he donates, but he is still tired all the time. He was put on anti-depressents (family inherited chemical imbalance). He was a totally different person for all of 4 days. Energetic, (annoyingly) perky, not tired at all. Then he went back to his normal tired self. They even doubled the anti-depressent dose, and it didn't help.
Kristen Long sounds like narcolepsy :/ I urge him to get it checked out, getting on medication changed my life.
Thank you. I will keep trying to get him to go back to the doctor.
Kristen it sounds like SLEEP APNEA . I have it and had everything happening to me you say your husband had. My husband says I fall asleep faster than anyone he's ever seen. I am ok up going, but if I sit down I was gone. I now sleep on a CPAP MACHINE . I used to sleep all the time, but the thing was I was never really sleeping. You don't get restful sleep with SLEEP APNEA that's why your always tired and can fall asleep so easy.
Does he snore?
Does he quit breathing?
Is he overweight?
These are some big signs.
1968catrece He does snore, especially laying on his back. He is a bit overweight, but not bad. I have insomnia, so I've layed there for many hours and I haven't noticed him quit breathing. I keep pestering him to see a doctor, but he says "Yeah I know I need to" but doesn't actually do it. It's making me really mad!
If epilepsy is hyperactivity of our excitatory neuronal system then narcolepsy is hyperactivity of our inhibitory neuronal system.
it all makes sense now
Drop your age when you was diagnosed n the age you are now
I was 5 n now I'm 26
First.