Waking Sleeping Beauty: An Antidote for Hypersomnia
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- Опубликовано: 20 ноя 2012
- Full Story: bit.ly/QbnZcG -- Researchers at Emory's Sleep Center believe they have discovered a safe and effective treatment for the sleep disorder known as "idiopathic hypersomnia."
Full Story - An antidote for hypersomnia
news.emory.edu/stories/2012/11... 
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I would love to know what it's like to feel normal... If I ever wake up feeling refreshed, it never lasts longer than 30 minutes to an hour, then I'm back to feeling groggy and needing a nap
The same here ,I hated myself very much 😓. All people say you are lazy .you have the key . But I can't .every single day I go to bed and say well l will improve my sleepiness and decrease sleep but I wake up just stay half an hour to maximum one and then feel sleepy I go and wash my face with cold water but non sense.
I've been suffering for years. I've told my psychiatrist I sleep too much, and he says it's because I have depression but I still sleep for up to 12 hours on a good day. I've been in and out of university, because I miss classes while sleeping, or I feel too tired to go. No one will listen to my opinion! It may be caused by my depression, or maybe my hypersomnia causes my depression. Maybe it's cyclical? I'm wasting my life away, and I don't want to continue to live on benefits. I do well at school, and want to work in the medical field helping people. But no one seems to be helping me. I've been suicidal, I'm just sick of this. Can anyone help me?
Hi Anna, my partner is in a similar predicament to the one you describe, and it seems totally awful. I'm sorry you're going through this, and I hope you get the medical attention you deserve!
Thanks! I wish all the best for your partner as well. It's a very tough thing to go through.
you are not alone. I got the same type of advice -was all wrong because I did go to Emory and was diagnosed with Gaba plus thing-I never had depression but was diagnosed with it cause of my tiredness. If you have depression, then it is caused by your hypersomnia.
Wooooow Anna are you inside my brain? I’m the same, the pain is real and doctors don’t believe it... I’ve just been sent home with a “sorry, I can’t help you... Try to put the alarm clock away from your bed...” I even rolled my eyes at the psychiatrist. The problem is real!!
It’s just like the chicken vs egg question
I was diagnosed with IH several years ago. It's like a prison sentence. I absolutely feel like a prisoner in my own body. I can sleep for several days straight, only waking up long enough to force down a meal and go to the bathroom. I take stimulants, but it's a crap shoot. They help me with alertness, but I have the energy to do anything. I can't even take a shower if I don't take my stims. I have all the want and the desire to do the things that I want want and love trapped inside the body of a living zombie. I want to run and play with my grandbabies so bad. I treasure the rare days that I can do that. I hope that some day a cure is found because I'm sick of getting my hopes up on treatments that stop working.
@@calvin3446 I can absolutely relate. I used to get in trouble for falling asleep in class and I couldn't get anyone to understand that I couldn't help it. I was a paraoptomectric for over 20 years and I loved my job. But, working in the medical field, handling ICD-10 codes, coordinating and filing insurance, scribing for the doctor, fitting contact lenses, edging spectacle lenses, handling patient files, coordinating surgeries etc... there is no room for errors. As much as I hated it, I decided that I needed to go ahead and stop working when I realized that I starting to make small errors. Being detail oriented was something that I took pride in. I knew that my bosses never had to micromanage me or double check my work because I triple and quadruple checked my work before it ever touched their desk. I left the field of ophthalmology in 2017 and I've missed it terribly every day since. I'm only 53. I have 5 grandbabies and a lot of living to do. I don't want to just exist until my time runs out. They can put a man on the moon, fly people all over the world and have a phone, camera, camcorder, computer, mp3 player all in the palm of our hands, but they can't make a medication that can help keep us awake as well as give us the energy to be productive without giving us the jitters or making us crash. I just want to feel normal. I get so jealous when I see people out walking, going to events or coming home tired because they actually did something to be tired. I'm not trying to sound like I feel sorry for myself. I have great days and when I do, I try to get as much as I can out them. I have a great support system and I'm so thankful for them. When you have a condition such as ours, you MUST find the silver lining always.
I thought this video found the cure?
I would love to do this study on the med...to feel normal oh that would be nice! Ididopathic Hypersomnia is so horrible to have...feel like a horrible mom and wife because I am cursed with what I can not control or change :(
I have never felt good upon waking, I would love to know how that feels. If only I could sleep 7 to 9 hours oer night wake up without an alarm and feel alert and happy.
I suffered with this horrible affliction for 23 years. I finally figured out what the cause was for my case on January 20, 2023. It's a bit of a long story how I figured it out so I will cut to the chase and tell you my solution. STOP EATING SUGAR and UNNATURAL CARBOHYDRATES such as bread, pasta...etc. My condition went from falling asleep everytime I sat down to being alert and awake with ease all day long. This amazing change happened within two days of getting off SUGAR and UNNATURAL CARBOHYDRATES. I still can't believe how great I feel, no more brain fog and fighting to remain awake during the day. Not sure if this will help you but it's easy to do so why not give it a shot.
I'm very happy that worked for you 😊. I wish I could say the same. I tried it for about 18 months. I didn't benefit at all. I wanted so badly for this to be my answer. But, I'm not going to dog anyone who has benefitted from it. I say kudos to you!!! Keep on keeping on ☺️.
I wish this was the case for me. I came down with this during the period of my life when I was on keto. No sugar or carbs. 😔
I am diagnosed with this and the longest I've slept is 3 days and on average 18-22 hours. It's rare that I wake up after only 12 hours of sleep. I've been put on stimulants and eventually they would have to up the dose since it wouldn't work anymore. I had to be taken off of them because I was afraid of getting a heart attack or something if they went any higher.
I have a friend that sleeps 13 hours a day at least his most time sleeping is around 3ish days hours
pretty crazy stuff
MikaGinelle - Hello :) you ever find a cure or a solution? I’m really struggling... please leave a comment if there is anything that helped you... Love
Thanks for sharing your story. It's so hard to meet ppl with hypersomnia so it's comforting to hear your story (although I wish no one had this!) ..
I've been on amphetamines to treat hypersomnia for around 20yrs. Your story sounds so familiar. The tolerance effect from amphetamines is challenging to manage and typically I have to take a week off every month. I'm hoping to one day get off them but to be tired and 'sleep drunk' which is generally a nightmare - I'm stuck in zombie mode when I don't take meds. I can only eat, breath, and sleep....
Yes 22 hrs straight is my max as well but I've definitely stayed in bed and slept on and off 64hrs for 3 days... Just up 3 or so hrs a day.
I have suffered wit this all my life since a child. During the 1990s I found sleep clinic who did a study on me. I had a aberrant T spindle wave. The doctor prescribed Cylert. I was no longer able to take it and had since been removed from the market. I am now taking Provigil which seem to have titrated upwards. I am a diabetic and hypothyroidism. My doctor cannot not get access to the medicine in this video. DARPA sleep studies confirm first used Italy has a great impact on this problem.
Liam Case Beistle Your hypothyroidism and Diabetes makes it complicated to know which route of meditation plan to prescribe. Have you tried Nuvigil? or, other ADD type meds? And hopefully you're on something like Levothyroxine for your Thyroid regulation. Join the IH support group on Facebook. Ppl from all over the world have shared our experiences here. It was helpful to me during my initial diagnosis 3 years ago now, to have answers from this group. Still helpful as a support system.
Non of my family believe I have this. My anxiety of exhaustion has increased enough where I don't leave my home now. I would love a doctor letter or check off sheet to laminate, put in my wallet, and show as proof because even those that believe me just don't get it.
Lauren Rooney
😴 XYREM 😀❣💕💕💕
It's exactly the same with me. They all just think I'm not on a proper sleeping schedule. People who don't have hypersomnia have difficulty understanding that it's out of our control. I have lost countless jobs, flunked college courses, missed out on concerts, parties, events, etc. And have destroyed romantic relationships and close friendships simply because I do not have the energy to go out or do anything. Do you think I want to sleep instead of having an active social life!? Absolutely not!! I HATE living with hypersomnia. It's been controlling my life since I was about 15 (I'm 32 now) and despite being on adderall to help keep me awake and functioning during the day, I still feel exhausted all the time and can sleep for days if left to my own devices. Not to mention I've already had to increase the dose of adderall bc my body had gotten used to the dosage. I'm already on a high dose but my body is becoming immune to it again. I don't want to keep increasing medication, adderall is already a misused drug and too much of it can harm you but without it I'm nothing but a walking zombie. Your body becomes a prison and hypersomnia is the warden.
I understand
Wow I want this!! I live in Denmark where there are only around 30 cases of hypersomnia. I was diagnosed 11 years ago, but still don't get any treatment. They already tried testing the known stimulants, but no one in Denmark is using flumazenil for hypersomnia patients. I have had to give up my life while I'm waiting to get a treatment that works - because I sleep 12-19 hours a day and occasionally 40-55 hours, and therefore I can't work, have a life or even get sufficient food and water due to the amount of hours I sleep.
AGOY_ Yogateacher DK I would love this treatment as well. It is not available in America where I live
My god - sign me up! I have been living (if you can even call it that) with idiopathic hypersomnia for years. I'm well beyond the max recommended dosage for modafinil, and take Adderall on top of that. Still tired ALL THE TIME. Praying that this treatment becomes available to the general public soon!
Get checked for fibromyalgia (FMS).
I take modafinil and caffeine for IH, but still tired. It's worse without it.
I constantly bargain away time to sleep. Do I have to put on make up in the morning? Do I have to get up or can I work from home and nap? Sounds so familiar in some ways. And then you mentioned propofol. It was the reason for 2 out of the 3 times I woke up refreshed in the last 20 years following two day procedures where they used propofol. Unfortunately, as Michael Jackson proved - not good for home use. Very interesting work.
Nancy Simpson Flumazenil is the IV drug that wakes you but there is a cream or lozenges that compound pharmacist can make for at home use. Proponol will put you to sleep. Some people try Xyrem to put them in a deep sleep at night but that's been associated more with Narcolepsy from my understanding and it's not available everywhere.
I feel the exact same way!
I need this medication NOW!
I sleep up to 30 hours a time. Never refreshed always exhausted. Finn a find this paper
simon o neill
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I've been on Adderall 30 mg twice a day for a few months but only works for about half an hour now. I only take it hoping I won't fall asleep while I am driving my daughter to school. It's getting to be more and more of a struggle which I am started to lose. I have lost 27 pounds since I started taking it though. Will have to give up driving soon if this progresses any more.
PaulaQuate Have you tried Provigil or Nuvigil in combination 1 Adderall or none or with Ritalin or Vyvanse instead?
Provigil and Nuvigil never worked at all for me. I now take Adderall 30 mg twice a day as well as Adderall 5 mg twice a day. Seems to help a little.
PaulaQuate ok. Glad it helps a bit. most of us can't take Provigil or Nuvigil without the combination of a stimulant like Adderall so that's not strange but the 2 do enhance the other. Adderall would be the perfect compliment to either but the side effects of increased heart rate and blood pressure was too much for me to accept hence my use of Vyvanse. don't give up
PaulaQuate
😴 XYREM 😀❣💕💕💕
PaulaQuate I too am on adderall, I used to be on 60 mgs a day but now i'm up to 75 per day. I'm becoming immune to it again but I don't want to keep increasing my dosage. Vyvanse is too expensive. I don't want to have to take stimulants in order just to feel normal and active during the day. You know?
I want to cry due to how relatable these comments are. I know for a FACT that I have hypersomnia. I can’t guarantee that it’s idiopathic, but nothing seems to help. The constant exhaustion makes life feel so pointless. I did a sleep study that cost me like $1,000 out of pocket, even though I have good insurance. I was told that everything came back negative and I don’t have any type of hypersomnia or narcolepsy. To be fair, I accidentally missed my follow up appointment. They never called me after that though and I’m too depressed most of the time to initiate things myself. I’m at a loss. I would try almost anything to feel awake and alive again.
Me too. I want to sleep for the rest of my life. I do stimulants a lot but they give me a lot of nausea and makes me feel like a robot too. Not myself.
Is there some way to get this treatment in America!? I'm sick of taking stimulants to feel normal and function during the day. Even then I always feel tired and can still sleep for days. I just want to be able to wake up and know what it feels like to be refreshed and have energy. I haven't felt that way in over 15years
yes, contact your sleep doctor or sleep center at emory. Be aware that flumanzamel only works on 30% of the people with this gaba plus disease- I am one of those it doesn't work with
Ptr sling did you get a spinal tap as well?
yes
Brilliant! Happy she got it figured out
I'm N2 and started my third week on Xywav last night. I'm going the slow titration route, and still early in the process, but I'm definitely noticing an improvement. There have been side effects, and getting to the right dose is definitely a procee, but this stuff is the real deal and isn't just hype.
it's still not available in my country :(
This gives me hope! Most days I sleep 18 hrs a day
How do I get this treatment?!
Is there any update on this?
Has anyone done a study on LDN and IH?
I wish someone could explain the reason for IH/Narcolepsy treatment refractory. I wonder if this treatment includes Narcolepsy with long sleep time patients?
Pam Jennings
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That's me right now. I can't wake up even after 24 hours sleep
This video just makes me soooo sad. Ive been battling chronic hypersomnia for 17 yrs, never has a Dr even cared enough
to research or try different things.. just brushed aside like trash. WHY ISNT THIS DRUG AVAILABLE YET WHEN ITS CLEARLY
WHAT WE NEED.. HECK I CANT EVEN GET A DIAGNOSIS YET.. ive only had that instant wake up from 1 drug.. but like your
drug its not available to the general public either.
Shes on a mrballens medical mysteries
is there anyone out there now that can talk with me about ihs?
Deb Beery yes but also join the worldwide Idiopathic Hypersomnia support group on Facebook.
Deb Beery
😴 XYREM 😀 ❣💕💕💕
I will!
All mine life people frinds family mock me why I'm so lazy why look so tired all the time I found out by a ex that I had a sleeping time way to munch he wake me up he couldn't believe I slept way to munch. I wouldn't understand why slept so munch wake tired just to go back to sleep because I'm tired .
I have hypersomnia one week yes,one week no.So sometimes is only 1 week per month,sometimes 2 weeks per month.
I sleep 16-21 hours per day whne i got the hypersomnia sleep attack.
Annoying!
sounds more like you may have Klein Levin Syndrome
this drug is not proven too be ok
Exactly, not ok to everyone, mainly those who seek it as an antidote to benzo abuse. But in cases such as idiopathic hypersomnia it's been proven to be highly successful. I'm living proof because it's been used on me and it worked miracles - not a single side effect and it's been a couple years.
Imagine if you could get this amount of deep sleep after strenght training. Get up and train and eat a whole day until you collapse.. Getting between 30-40 hours deep sleep straight and repeat the cycle. Extreme gains. Imagine taking roids at the same time... GEEZ!!!
This sleep disorder is not to be joked about getting pumped at the gym. It is serious, devastating and it ruins lives!
That's optimistic, but our relationships and jobs are affected by this disorder. If people were more humble and understanding, I would be a happier person.
Fortunately, my job allows me to take two hour lunches, time to eat and nap. I force myself to take a nap after I eat so I don't sleep later. It's been consistent for a few years. I consider myself lucky.
What a cruel comment, larsholm. IH is an incredibly lonely, living death.
We don't want gains, we just want to be able to hold a job or start/maintain a relationship, bathe once in a while and stay independent.