Відео

Hi Dr. Rye, I saw you in 2015. You are a wonderful doctor!! I'm sorry to hear of your dad's passing..

I have IH, willing to send this doctor copies of my bloodwork, MSLT, MRI & EEG if it helps get us “IH-ers” anywhere closer to better treatments/cure.

This seems to be a global phenomenon. Even so called Sleep Disorder Specialists here in Europe seem to really lack basic knowledge in treatment of sleep disorders and hide behind so-called guidelines instead of putting the patient’s need first, which ironically is what these guidelines say: Put the patient first, treatment is highly individually, keep the dire consequences of no adequate treatment of patients in mind. Sleep Deprivation is considered torture, yet HCP do not hesitate to keep up this very state. Most lack basic understanding as well as empathy to really understand, that in Narcolepsy for example people are physically unable to achieve the human rest mechanism. HCP don’t get it. It is like missing two legs or being deaf or being blind. It stuns me, that so called specialists really do not get the message that Narcolepsy means: from now on, you will never ever again be able to rest during your sleep phase. If N hits you with age of 15, you lack rest for 60-70 years! Imagine that.

Thank you so much for the upload. It is really encouraging to hear there is some research being done, and gives me something I can talk about with my doctor and be able to mention real studies and real doctors (instead of getting dismissed as just collecting questionable info from surfing dr. google).

I don't "almost feel guilty," I feel incredibly guilty asking for help. Sadly, I've had most of these issues since I was a child. I grew up hearing, "Eat better and exercise." I've only ever voluntarily been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution. I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. It rarely worked. I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them? These days, I'm awake as little as 10 minutes or up to 9 hrs per day, generally.

Good luck in America

What is the name of the documentary, please?

I don't know about anyone else, but I eat in part trying to boost wakefulness - sugar, caffeine, etc. Being awake does not just eliminate that but also allows for activities. The daytime sleepiness test is indeed torture. Sadly, I've had most of these issues since I was a child. I've only ever been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution. I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them? Apparently, it runs in the family, though I was much worse than my dad.

One of the AEDs I take helps GABA....I am almost Ketogenic as Virgin Coconut oil reduces appetite, I also havs a VNS because the epilepsy used to be Intractable because it's on both sides of the brain. I belive the AED that helps GABA helps alot and I get enough sleep. Thanks for your review!

35 years, increase in hours asleep till now I have no life. When Provigil became generic Modafanil, it doesn't work. I don't have a Sleep Disorder, I sleep just fine. I have a Wake Up problem... I'm very rarely awake and refreshed and alert.🛌🏼🛌🏼🛌🏼

"sleeping my life away" is exactly how I feel. I'm 22 years old, talked to many professionals but no one seems to understand or take me seriously. I feel like my life is skipping thru my fingers.

Why did u make lumbar puncture??

Yes, that's it exactly the feeling of my life for years

Dr. Emrich, Thank you for sharing!

I must admit, this made me tear up. Very well done. Snooze time is of course much much longer than depicted, but who would want to watch a video of someone pressing snooze for hours. 😂 Kudos, and thank you for making this!

No one will ever understand amyomes' sicness. Where alone in our sickness. Thats just life unfortunately.

I explain it as feeling sedated.

Well done!

I have had IH since my brain tumor diagnosis in 2002. It cause my divorce as he did not care nor try to understand what I was experiencing. I still struggle.

I've been suffering for over 41 years and after my 7th sleep study I have been finally diagnosed with IH. Thank you for sharing your story.

OMG this explains exactly how I am and feel

How can I get a copy of this PowerPoint presentation?

I am 2.5 hrs awake after a 7 hr night on cpap which is good enough for the most days but I’ve taken my aderrall and 2.5 hours into the day and ready to lie down falling asleep listening! But I can go 16 hours or 3 hours and feel the same. I’ve even reached past 18 hours of sleep without moving having sore hips upon riding and ready to nap or go back to sleep after a few hrs being awake. I’m 35 and have been having this since I was a teenager. Worked night shift for 8 years in hospital and 9 years day shift. I can wake up ready to go hit snooze and if I’m not late for work or had a family to tend to, I could easilly wake up 12 hours later after sleeping for 8-12 and realize omg I slept the day away. Meds help very little I have anxiety about asking for yet another Dr. or NP because it’s always the same things.. your hormone levels look great you’re overweight you eat terribly and vitamin D is low. Well it’s because I’m a nurse who works extra has a young family needs money and lives in Indiana! I’m lost everywhere I turn. I need help with this to have a productive life!!!

What is Unight?

Did y'all ever tell how to find a Sleep aware therapist? Acceptance of losses and change of my self image and isolation, is there a quiz or screening tool to know what to work on first? The whole thing is overwhelming, can't think how to break into steps

My pregnancy has changed my brain too...I can relate to.what.u were saying

I'm 21 years old and just got my first definitive diagnosis of IH from a sleep study a few days ago. I began seeking treatment 3 years ago and still havent had successful treatment. Its been an agonizingly slow process trying to get answers and treatment while fighting what feels like a losing battle both with my symptoms and with the healthcare system. I didn't even know what IH was until 6 months ago, when I watched videos and read testimonies of people who suffer from the disease. It was an amazingly encouraging feeling to realize that I'm not alone in what I've experienced, and that there are actual treatments that have worked for some people. But after watching Meghan's video, as well as others, who have far far worse symptoms than I do, I feel sad. As my symptoms have gotten worse, I felt like I would eventually have an accident or fall behind in school or lose my job. But for years now I've been trying extremely hard to manage and keep up and have miraculously been able to keep moving forward and progress in my life despite falling asleep in class, at work, and with friends and family. Im about to finish my fourth year of college and begin my third fire season as a seasonal firefighter this summer. I understand that not everyone with IH has the privilege that I do to still have my life in tact. I don't know whether I will eventually find a treatment that will help me, or whether my condition will not respond to treatment and worsen with time. Regardless of what happens I will be thankful for the life and opportunities that I've had so far and I will remember those who've lost almost everything; their careers, their relationships, even their dreams and aspirations. I can only hope, pray, and contribute to further researching IH in the hopes that a cure, or at the very least more effective treatments will be discovered. But for anyone who feels trapped or despairing, this is the best comfort of mine that I can share, Revelation 21:3-4: "And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Once this life has passed by, which could be any day for any one of us, Jesus has prepared a kingdom for us to inherit by faith where we will be awake, alert, and truly alive in His presence.

Later on life my family told me many times coming by I be asleep when I had more of sleep when I got older. Not say about my eyes when people take or family take a picture i have always close my eyes. This a very help so true. I see lil people know about it and just judge well I have tooken test and gotten diagnosed by my own family.

Thank you.

wow this is so relatable. in my 20s dealing with this and everyday is a challenge.

It was like I was watching someone tell my own story. Just recently I began taking Benfotiamine and Sunflower Lecithin in an attempt to increase my ACH levels. While I still sleep an unnatural amount of time, still experience brain fog if I over do, as well as muscle aches and fatigue, taking the supplements has greatly improved my cognition and my ability to stay awake during the day. Before, my awake window maxed at 3 hrs. if I did nothing physical (i.e taking a shower). Since taking the supplements I can manage to stay awake most days. I still suffer and pay for it if I "over do", but my quality of life is greatly improved. I can't guarantee it will work the same for everyone, but they're relatively safe supplements and aren't too expensive, especially if it means getting even part of your life back.

i am 17 i just got an ih dignosis and im terrified im exaughsted i sleep so much i cont do school work i feel like my whole life plan is falling apart i whent from a 4.0 student to wear i cant do anything but sleep i relate to you so much and im just terrified of were my life is going thank you for explaing it so beautifully

As I lie here trying to wake up.... hoping to get a clear answer for nutrition and IH.... this is such general advice on general self care. Circadian rhythm... really cannot decide just to eat meals at certain times. If that power was there, we'd be doing it!!! The sleep overtakes and wins.🛌🛌🛌zzzzzz

Doctors should stop over prescribing Antibiotics which destroys the gut. You keep mentioning bacteria but it could also be fungus

I agree, why has no one followed up on flumazenil?

Take out the background clacking. Makes it hard to listen. Also equalize volume from intro to main interview.

I filled out the survey, now back 🛌🛌🛌 to recover. Well designed survey, rest breaks built in. Thanks

How do we access the survey, I want to help find an answer. I'm missing my limited time on earth

How do we get to be included in patients panel

There have been pretty amazing studies using Fecal transplant for insomnia. I picked up a stomach infection several years ago and noticed worsening insomnia Hypesomnia. I remember always wanted to try ( now they have poop pills with studies. Studies for ibs and other conditions. I also started developing serious constipation over the years. I also had a heart transplant 23 years ago. Some studies also show possible benefits for atherosclerosis. Sadly over the years my arteries started clogging up pretty severely.

First to comment. I'm caught in the whirlpool of Pulmonary and Neurologist, and now have ME/CFS added to Dx. Need a patient advocate,too tired and "dumb" to handle the System.😢

I have Arnold Chair Malformation 1, Idopathic Hypersomnia, eds, dysautonomia, and mcas. I don’t have mental health issues. I do have issues managing medication due to side effects and allergies, and my IH Medication doesn’t work well all the time either. I can’t take other types due to heart rate issues and the fact it can raise my intracranial pressure which isn’t allowed.

Dr. Trotti is my doctor, an expert in the field of sleep disorders, and my last hope! Love you Dr Trotti!!

What is your sleep schedule, how late are you go to bed? And how late are you wake up?

What is your sleep schedule, i sleep in the afternoon from 14:00-15:30 only i struggele whith how late to go to bed and how late up, and how late do you sleep 1,5 our in the morning, and how late do you go to sleep and wake up?

It's scary that the sponsors are ALL PHARMACEUTICAL!!! Surely there are other more mechanical or natural answers to explore.

Its heartbreaking to live with this disorder, my own kid's think I'm faking and making excuses, just lazy. Others think somehow that they can relate because they get tired too. This is tired on a entirely different level, like you said, affecting every aspect of life... it makes accomplishing anything a crazy battle and in a lot of cases entirely impossible. It doesn't matter how much you explain or how many times you explain. It doesn't matter how many you tube stories you share, articles or even your own doctor's records, it just isn't even close to understood unless you also live with this nightmare. I appreciate you being brave enough to share your story, I am so sorry for your round the clock struggles with this debilitating condition... physically, mentally, emotionally, socially and in every other sense, debilitating condition

Thank you for sharing your story. For the first time in my life, I feel like all those years make since and it's not something I made us as ppl say..It ruined my life, each day is a battle for staying awake and trying my hardest to control my sleep. Since waking up is the hardest..U've experienced headaches, low blood pressure, tiredness..so I don't go out much..litterally sleeping my life away

I've been struggling with this for years. But I wasn't aware it was a disorder... it's a living nightmare when u wake up to realize you just wasted another day, and u can't help it bc u feel like u have no control over when ur mind is gonna feel sleepy urging u to sleep. The irony is no one understands that each day is a battle for u to control ur sleep forcing urself to sleep at a proper time, since waking is something u have no control over

He does not sound encouraging. I'm still waiting on some treatment for a cure. Missing my life 🛌🏼🛌🏼🛌🏼