Dr. Emrich, please know the effort you put into recording this video was worth it. It's important the world hears from people with such disabling invisible illnesses as yours. I have a circadian disorder (Non-24) which is different from hypersomnia, but I have had times of extreme sleep inertia and sleep drunkenness, so I have some understanding. My life is in some ways similar to yours. Every day is a struggle to do something basic, and to not overdo what limited abilities I have. When you started discussing a daily minimum I paused the video to think what mine is on my worst days. The only thing I could think is that since I live alone, I always make sure I eat. When I pressed play again, that was your minimum also. I do shower and wash dishes most days, but at my worst, just being alive, breathing, eating, and using the bathroom is about all I can accomplish. I also can't easily watch movies. My attention does not work for that long. Other people don't seem to understand how I can't pay attention through a simple 90 minute film. It's hard to want to be alive sometimes, but I am glad you are so that I could watch your video today.
Michelle, your experience is almost identical to mine. My world revolves around sleep. My career as an LPN is seemingly over. I was happy with my diagnosis and thought I was going to treated and able to function again.. and sadly was knocked back down to earth when it wasn't working. I also use subtitles on TV.. and I dislike errands and appointments because the rest of my day is ruined. Daily is chosing to sleep, exercise, hygiene,... and sleep always wins. I struggle trying to explain what this is to people and they usually get uncomfortable, stare at me blank face, or start talking about being tired too. It's so frustrating. While I'm sad other people experience this I'm thankful that someone knows what I'm talking about. And everything you've described hits home for me. My husband literally had to bring takeout home for supper just last night because I was exhausted. It's a vicious independence and autonomy stealing disorder. I wish more than anything there was a cure. Im only 30 years old... have felt sleepy alot of my life but severely the past 3 years. It's just awful. My husband gets sad for me cause I'm 'sleeping my life away' and don't I know it. Anyway had to comment because I literally have no one to talk to about this that actually understands. Wishing anyone with IH health and wellness♡
I was diagnosed with IH. I am a Counseling Psychologist in SA. My disability cover was declined because I met all the criteria except they require you to earn 80% less of your salary for a period of at least 3 months. As I am self employed it was impossible to stop working. I slept between clients, felt absolutely awful, came home and could do absolutely nothing for or with my family. I am now working a few hours a week so that I have sleep time during the day. Unfortunately my brain fog is becoming an issue and I am not sure how much longer I will be able to counsel clients. I can totally relate.
I am in a similar situation too. I was denied disability in 2017 and it was soul crushing. I have been doing my best since then but it has really taken a toll.
I'm glad you had the energy to film this. I refer to my aching muscles as similar to atrophy. I related to most of everything you went thru. I'm so tired of being tired
Bless your heart and thank you for sharing your story. I also have IH and had it since I was around 4yrs old. But I didnt get diagnosed till I was 30yr old. Growing up, I was always falling asleep and so tired. I was put in special ed class at a young age as everyone believed I had a learning disability and didnt realize it was IH as it was in 70's and 80's. And I never learned my vowels or etc, because I was sleepy all the time. i have trouble reading big words & didnt know how to pronounce them. I would pinch myself in school to help me stay awake, or I would try to get hyper in class and got in trouble. I was the last to get jokes, I got inpatient learning, as I needed to learn fast before I fell asleep. I played sports to keep active but I would be so tired that i was clumsy. Learning to drive was a nightmare as back then there was no cell or gps or etc, so I got lost when driving. I still do even with my cell. I call it directional disability lol. I pray I never get lost in the woods. I would forget peoples names, that includes relatives. I tried provigil 1st time and it was like a door being opened in my mind, i could read a book & draw without falling asleep, but it was short lived and so on. Years of Adderall & bad side effects, went back to highest dose of provigil 2x's a day to cope. People think Im antisocial but Im just sleepy. I explained to company that I work for my disability, but yet they truly dont get it. I have to work 3x's harder, but doesnt matter as they still judge me. Lost friends over the years as any drama makes my IH worse. I dont date or have kids as I would be a horrible Mom and I wouldnt want to ruin their life. I missed out on my nieces & nephews birthdays and etc because i was too sleepy. When i drive more than 3 hours, i have to get pulling over for a nap even on meds. And Im pre menopausal which makea things worse. I hope they find a cure instead of these drugs that try to treat some symptoms. Thank you again for sharing your story.
The beginning of your story sounds exactly like mine with the journey. Only, I was 17. My mother and I had no idea how to navigate the whole thing. we just accepted diagnosis grateful anything was diagnosed. I went through years of medications I did not need that damaged my liver and caused weight gain. It was about 13 years until I got a sleep study, 2019. I started stimulants. I felt awake, more awake than I had ever. Probably since right before puberty when my parents used to marvel at my endless energy and extreme focus. In my late 20's I gave myself till 35 to give up the dream of having a kid. As I get closer and honestly sicker, as I have 9 other conditions, including CPTSD, and live with severe daily chronic pain and inflammation. I could list everything DX's so far but it would make this even longer. My husband is also Disabled, but is able to work from home. All his energy goes towards making money so we can live independently. A child, is just not possible. My body can't survive it and as much as we want, we barely have enough function to care for ourselves, home, and cat. Because of the CPTSD, despite my lack of REM I have detailed experiencing like waking but sometimes with superpowers hell nightmares. The best I get most times is becoming one of the crew in a place like AHS Murder House or Hotel. And those shows are like monday morning cartoons compared to what I actually dream. SO THAT'S FUN. *insert dark humor as it is my main coping mechanism not learned in therapy handed down by my family. Who are also falling apart because we are genectically cursed.
Completely cut out gluten from your diet and see if that makes a difference. I had horrible nightmares but eliminating gluten they are now gone. I have no idea why it makes no sense!
Oh Michelle, my heart aches for you… and for me, as we are IH sisters. Your story is very similar to mine (except I’m not a doctor). Thank you for taking the time to make this video. I just now stumbled across it. I plan to share this with those close to me as it so succinctly describes life with IH. I realize this video is 2 years old so I hope you are doing better, perhaps due to some of the newer medications available to help treat IH.
I firstly want to apologise I should have commented when I first watched this. But it was like finally people couldn't look down on me for my condition if watched this...mostly because it moved me so very much. I've watched it so many times ..I feel less alone...I've had idopathic hypersomnia with delayed phase and chronic pain Since a medical accident in the womb..I was born with Hydocefilus aspirations at 2. And symptoms at 13.. pain at 40... so lonely being up here without anyone x
Finally, after watching your video and reading other's comments, this explains what I've been experiencing for 15 years. Yet, not one doctor has ever suggested a sleep study. It's like they think I'm exaggerating the amount of sleep I require. I'm not quite as debilitated as you, but I'm on that road. It just gets worse each year.
I am so sorry that the treatments failed. I am still tired every single day, and most of every single day- but I was at a point of all the time brain fog with it, and I took a nuvigil and suddenly it was like I woke up for the first time in 3 years. I was still sleepy, but I could think. It doesn't last all day and some days it doesn't work at all, but its loads better than it was in those lost years where I can hardly remember anything that happened. I've had symptoms as long as I can remember- anyone who knew me young knew me as the person who came over to hang out but fell asleep every time. I too experience pretty intense body pain but I've been able to get to a point of exercising 4 days a week for about 50 minutes. It felt impossible at first, now its mostly ok. I am still sore after, but not the debilitating you-can-barely-walk version that haunted me for years on end. The pandemic gave me the bandwidth to focus on my health, and somewhat to my shock, there have been some improvements. I don't know that a healthy person could see those improvements, but I can, and I'm trying to keep it up as I know how hard it is to dig out of the deepest hole. How you'd get the progress without totally altering your life, I don't know, but the pandemic altered it for me.
I suffer from IH. Thank goodness, Finally, someone took the time to listen to me! Mines has gotten worse & cognitive function is lacking. Daily life is difficult.
Thank you for sharing this video. I didn't have the words or the energy to describe my illness to others but this video sums it up completely and wholely. From the periods of time where IH gets worse to doing the bare minimum exercise and being in pain I didn't know that these were related until watching your video. I was diagnosed a year ago but it took a year before that for me to bring myself to a doctor to ask what was wrong with me. My family will never understand what I feel. They will never comprehend what it's like to wake up and feel like your brain is going to shut down again. I know I can't have another child because I don't have the capability to function long enough to care for them completely. I'm in tears writing this and I thank you so much for putting what you're going through on UA-cam so I could find it. I'm going to see a therapist, and a nutritionist and do whatever I can to put myself in a better position to care for me and my family. I hope to be able to share your video with others to help them better understand what we're going through.
I am trying to watch your video and it’s hard because the person you are describing is me. I couldn’t understand what was happening to me. It hit me in my mid 30s and I just thought it was stress from my job but I realized that no matter what I just couldn’t get enough sleep. I have been taking Vyvanse and it has been a life saver over the years but now I’m starting to get used to it. I was recently diagnosed with IH and now I will hopefully start my journey with the medicine Xywav if my insurance company approves it. I’ve felt so alone for so many years, to the point that now I have almost isolated myself. I am a shell of who I once was. It’s nice to know that there are others that can relate to how I’m feeling. I remain scared….
Make sure that you drink alot of water too. I started seeing a chiropractor and after 3 months gained some energy back. I did baby steps and can slowly walk my dog and enjoy it now. I can also do some sit ups, lite arm wts, leg lifts, sqts for about 15 mins a day. I just do alittle a day. I started with easy yoga poses on the floor to stretch my body after I got up. My cognition sucks, short term memory problems, misplacing items, my sense of direction is terrible and I mispronounce words or say the wrong word sometimes. I love watching movies, youtube and reading books for my brain. It took 4 months for me to get to this point. I also live by myself and lost most of my family and 4 friends in the last 3 yrs as they died.. I only have 2 family members left & they live 3,000 miles away. I want all of us to be spontaneously healed 100% by Aug 1, 2023. Hugs! ❤
hii i want to ask, can the medicine you take keep you awake every day? Or do you still have symptoms of very severe sleepiness like before undergoing treatment?
Thank you so very much for doing this. I hope I can share this with my family. I currently lie in bed, unable to do anything but watch TV. My almost impossible chore today was to go see my granddaughter in her Christmas concert. As you say, it was a Herculean effort to get there, both physically and mentally. I was able to slip out after her class performed (hate having to do that) and was straight back to bed. I am hoping to rest over the next few days as Xmas approaches, an event I loved but now dread. I hope you are in a plateau of symptoms right now and get to have some fun over the holidays.
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
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.
Thank you so much ! This video explains how I feel, even if my sleepiness started with a strong EBV infection which triggered ME/CFS (which also my diagnosys as IH). How can I contribute to translate subtitles into Italian please ? About your "subset "with fatigue even for a 30 mins walk", it remembers my condition : IH and ME/CFS.
How, I was thinking Epstein Bar Disease might be the start of when my IH first started! I was 16 years old and so very very 😷, ever sense I have had sleepiness soooo much more that anyone ever my age. I am now 59 years old and definitely getting worse and worse. I was finally diagnosed 1 year age with IH! After 5 years of telling Dr.s how tired I always was and no matter how much I slept never felt rested 😞. I would fall asleep while driving and reading a book or watching TV! Always 🥱 tired. I had 0 Quality of life😞. Not all depressed but just everything exhausted me. I’ve been trying different medication for the past 1 year now with not much relief. This is a huge problem for relationships and work and actually EVERYTHING. It just Sucks
No, no. My IH I have had since childhood. Usually 18 hrs. If I try to work full-time -teacher- I can sleep on the weekends for 22 or 23 hours. In my 30s I caught EBV from my stepchildren. I had CFS/ME. Please don’t think it’s the same. ME is viral! I was cured and am writing a book. It took 22 months of Valacyclovir day and night to cure! Fatigue is different.
I have IH. I think my whole Life but wasn’t diagnosed til like 36 and I’m 54. I have to have exact schedules and I struggle with brain fog, fatigue and confusion. I did raise my d levels to 70 and coupled with k2 (MK7), magnesium, a few herbs. I try to regularly eat dark veggies and I will say if I stay on top of my diet it’s better…noticeably when I raised my blood serum D levels. Not much helps…..I still struggle day to day. My daughter has it as well😔
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?
I’ve had it since I was a teen. I was nicknamed Drowsy. I think because I had it for so long I have been able to manage it better than others who develop it later. I feel like a functioning zombie. I didn’t get diagnosed till decades later. I wondered why doctors never suggested a sleep study. It took my husband who annoyed me to get tested for sleep apnea (which I knew I didn’t have) to finally get a diagnosis. Like someone else with IH ‘Amy’ I too felt surprisingly awake during my two pregnancies. How do you explain that one.
, Thank you so very much for sharing this video 💓. I love how everything is worded, because it helps me to explain myself to my family and friends that just don’t understand what I (we)go through. You say everything so perfectly. Thank you so very much 🙏🏻🙏🏻🙏🏻. I was thinking Epstein Bar Disease might be the start of when my IH first started! I was 16 years old and so very very 😷, ever sense I have had sleepiness soooo much more that anyone ever my age. I am now 59 years old and definitely getting worse and worse. I was finally diagnosed 1 year age with IH! After 5 years of telling Dr.s how tired I always was and no matter how much I slept never felt rested 😞. I would fall asleep while driving and reading a book or watching TV! Always 🥱 tired. I had 0 Quality of life😞. Not all depressed but just everything exhausted me. I’ve been trying different medication for the past 1 year now with not much relief. This is a huge problem for relationships and work and actually EVERYTHING. It just Awful
Hello Michelle, how are you feeling now? Have any new drugs come available that are helping you? ....I have had IH since 2012 after surgery for a brain tumour. Only just been through a SLT and now awaiting an appt. Do you also suffer from thermoregulation issues? (Debilitating ,uncontrollable, body heat) Best Wishes , Catriona (UK)😅
Have you tried taking extensive drug holidays and switching brands of stimulants? I sleep after 400 mg of modafinil , Ian finding even a week long drug holiday doesn’t make a difference now. Taking circadian at night and gabapentin helps someone as does only eating protein in the mornings even a bit of carbs are enough to send me dosing
Another must read author is pass it book is passages she has two books actually and I think you might like that because her research is amazing so I don't know why her book helped me so much and coming to appreciate my humanity it's flawed as it is but please consider these books and ask your friends for other books just talk to as many people that are trustworthy is possible in your therapy in your treatment and your recovery plan and be sure to not never neglect your spiritual health and that goes with your body your eating for some reason I found a study that talks about actions to take place in your gut the effect the levels levels in your brain so if your intestines contribute to your healthy brain chemistry go figure there's so much research out there that no one doctor could scoop it all up so don't feel overwhelmed just enjoy the recovery enjoys the road thank you
I'm tired of the microphone didn't pick that up it's b Renee Bren and I also had a lot of success in finding a reason to pray and meditate reading Gandhi and Annie Lamont is a hilarious writer who will bring you bittersweet tears of in recovery she's a hilarious writer the story about raising her son I read it in a day and probably I I gave away that book knowing I would never get it back and I hope 100 people have read it
Dr. Emrich, please know the effort you put into recording this video was worth it. It's important the world hears from people with such disabling invisible illnesses as yours. I have a circadian disorder (Non-24) which is different from hypersomnia, but I have had times of extreme sleep inertia and sleep drunkenness, so I have some understanding. My life is in some ways similar to yours. Every day is a struggle to do something basic, and to not overdo what limited abilities I have. When you started discussing a daily minimum I paused the video to think what mine is on my worst days. The only thing I could think is that since I live alone, I always make sure I eat. When I pressed play again, that was your minimum also. I do shower and wash dishes most days, but at my worst, just being alive, breathing, eating, and using the bathroom is about all I can accomplish. I also can't easily watch movies. My attention does not work for that long. Other people don't seem to understand how I can't pay attention through a simple 90 minute film. It's hard to want to be alive sometimes, but I am glad you are so that I could watch your video today.
Michelle, your experience is almost identical to mine. My world revolves around sleep. My career as an LPN is seemingly over. I was happy with my diagnosis and thought I was going to treated and able to function again.. and sadly was knocked back down to earth when it wasn't working. I also use subtitles on TV.. and I dislike errands and appointments because the rest of my day is ruined. Daily is chosing to sleep, exercise, hygiene,... and sleep always wins.
I struggle trying to explain what this is to people and they usually get uncomfortable, stare at me blank face, or start talking about being tired too. It's so frustrating. While I'm sad other people experience this I'm thankful that someone knows what I'm talking about. And everything you've described hits home for me. My husband literally had to bring takeout home for supper just last night because I was exhausted. It's a vicious independence and autonomy stealing disorder. I wish more than anything there was a cure. Im only 30 years old... have felt sleepy alot of my life but severely the past 3 years. It's just awful. My husband gets sad for me cause I'm 'sleeping my life away' and don't I know it.
Anyway had to comment because I literally have no one to talk to about this that actually understands. Wishing anyone with IH health and wellness♡
Thank you
And the people who comment how they wish they could sleep so long! It so hurtful and they have no clue!!
What caused your ih? Was it stress?
I was diagnosed with IH. I am a Counseling Psychologist in SA. My disability cover was declined because I met all the criteria except they require you to earn 80% less of your salary for a period of at least 3 months. As I am self employed it was impossible to stop working. I slept between clients, felt absolutely awful, came home and could do absolutely nothing for or with my family. I am now working a few hours a week so that I have sleep time during the day. Unfortunately my brain fog is becoming an issue and I am not sure how much longer I will be able to counsel clients. I can totally relate.
I'm so sorry got you x
Hi denise. I am in a similar position. How are you now?
I am in a similar situation too. I was denied disability in 2017 and it was soul crushing. I have been doing my best since then but it has really taken a toll.
I'm glad you had the energy to film this.
I refer to my aching muscles as similar to atrophy.
I related to most of everything you went thru.
I'm so tired of being tired
Bless your heart and thank you for sharing your story. I also have IH and had it since I was around 4yrs old. But I didnt get diagnosed till I was 30yr old. Growing up, I was always falling asleep and so tired. I was put in special ed class at a young age as everyone believed I had a learning disability and didnt realize it was IH as it was in
70's and 80's. And I never learned my vowels or etc, because I was sleepy all the time. i have trouble reading big words & didnt know how to pronounce them. I would pinch myself in school to help me stay awake, or I would try to get hyper in class and got in trouble. I was the last to get jokes, I got inpatient learning, as I needed to learn fast before I fell asleep. I played sports to keep active but I would be so tired that i was clumsy. Learning to drive was a nightmare as back then there was no cell or gps or etc, so I got lost when driving. I still do even with my cell. I call it directional disability lol. I pray I never get lost in the woods. I would forget peoples names, that includes relatives. I tried provigil 1st time and it was like a door being opened in my mind, i could read a book & draw without falling asleep, but it was short lived and so on. Years of Adderall & bad side effects, went back to highest dose of provigil 2x's a day to cope. People think Im antisocial but Im just sleepy. I explained to company that I work for my disability, but yet they truly dont get it. I have to work 3x's harder, but doesnt matter as they still judge me. Lost friends over the years as any drama makes my IH worse. I dont date or have kids as I would be a horrible Mom and I wouldnt want to ruin their life. I missed out on my nieces & nephews birthdays and etc because i was too sleepy. When i drive more than 3 hours, i have to get pulling over for a nap even on meds. And Im pre menopausal which makea things worse. I hope they find a cure instead of these drugs that try to treat some symptoms. Thank you again for sharing your story.
The beginning of your story sounds exactly like mine with the journey. Only, I was 17. My mother and I had no idea how to navigate the whole thing. we just accepted diagnosis grateful anything was diagnosed. I went through years of medications I did not need that damaged my liver and caused weight gain.
It was about 13 years until I got a sleep study, 2019. I started stimulants. I felt awake, more awake than I had ever. Probably since right before puberty when my parents used to marvel at my endless energy and extreme focus.
In my late 20's I gave myself till 35 to give up the dream of having a kid. As I get closer and honestly sicker, as I have 9 other conditions, including CPTSD, and live with severe daily chronic pain and inflammation. I could list everything DX's so far but it would make this even longer. My husband is also Disabled, but is able to work from home. All his energy goes towards making money so we can live independently. A child, is just not possible. My body can't survive it and as much as we want, we barely have enough function to care for ourselves, home, and cat.
Because of the CPTSD, despite my lack of REM I have detailed experiencing like waking but sometimes with superpowers hell nightmares. The best I get most times is becoming one of the crew in a place like AHS Murder House or Hotel. And those shows are like monday morning cartoons compared to what I actually dream.
SO THAT'S FUN. *insert dark humor as it is my main coping mechanism not learned in therapy handed down by my family. Who are also falling apart because we are genectically cursed.
Completely cut out gluten from your diet and see if that makes a difference. I had horrible nightmares but eliminating gluten they are now gone. I have no idea why it makes no sense!
Thank you for sharing this.. My heart breaks for you..
Oh Michelle, my heart aches for you… and for me, as we are IH sisters. Your story is very similar to mine (except I’m not a doctor). Thank you for taking the time to make this video. I just now stumbled across it. I plan to share this with those close to me as it so succinctly describes life with IH. I realize this video is 2 years old so I hope you are doing better, perhaps due to some of the newer medications available to help treat IH.
I firstly want to apologise I should have commented when I first watched this. But it was like finally people couldn't look down on me for my condition if watched this...mostly because it moved me so very much. I've watched it so many times ..I feel less alone...I've had idopathic hypersomnia with delayed phase and chronic pain Since a medical accident in the womb..I was born with Hydocefilus aspirations at 2.
And symptoms at 13.. pain at 40... so lonely being up here without anyone x
No one should look down on you x
@@maxjohn6012 forgot you could see sorry...and thank you xx
Finally, after watching your video and reading other's comments, this explains what I've been experiencing for 15 years. Yet, not one doctor has ever suggested a sleep study. It's like they think I'm exaggerating the amount of sleep I require.
I'm not quite as debilitated as you, but I'm on that road. It just gets worse each year.
Any update? Did you get a sleep study done? Why not recommend this video to your doctors.
I am so sorry that the treatments failed. I am still tired every single day, and most of every single day- but I was at a point of all the time brain fog with it, and I took a nuvigil and suddenly it was like I woke up for the first time in 3 years. I was still sleepy, but I could think. It doesn't last all day and some days it doesn't work at all, but its loads better than it was in those lost years where I can hardly remember anything that happened. I've had symptoms as long as I can remember- anyone who knew me young knew me as the person who came over to hang out but fell asleep every time.
I too experience pretty intense body pain but I've been able to get to a point of exercising 4 days a week for about 50 minutes. It felt impossible at first, now its mostly ok. I am still sore after, but not the debilitating you-can-barely-walk version that haunted me for years on end. The pandemic gave me the bandwidth to focus on my health, and somewhat to my shock, there have been some improvements.
I don't know that a healthy person could see those improvements, but I can, and I'm trying to keep it up as I know how hard it is to dig out of the deepest hole. How you'd get the progress without totally altering your life, I don't know, but the pandemic altered it for me.
Sadly, Nuvigil didn't help me
I suffer from IH. Thank goodness, Finally, someone took the time to listen to me! Mines has gotten worse & cognitive function is lacking. Daily life is difficult.
Thank you for sharing this video. I didn't have the words or the energy to describe my illness to others but this video sums it up completely and wholely. From the periods of time where IH gets worse to doing the bare minimum exercise and being in pain I didn't know that these were related until watching your video. I was diagnosed a year ago but it took a year before that for me to bring myself to a doctor to ask what was wrong with me. My family will never understand what I feel. They will never comprehend what it's like to wake up and feel like your brain is going to shut down again. I know I can't have another child because I don't have the capability to function long enough to care for them completely. I'm in tears writing this and I thank you so much for putting what you're going through on UA-cam so I could find it. I'm going to see a therapist, and a nutritionist and do whatever I can to put myself in a better position to care for me and my family. I hope to be able to share your video with others to help them better understand what we're going through.
Hey Tanya. I am going through the same thing. If you ever need someone to talk to. I am here. I could use someone too.
I am trying to watch your video and it’s hard because the person you are describing is me. I couldn’t understand what was happening to me. It hit me in my mid 30s and I just thought it was stress from my job but I realized that no matter what I just couldn’t get enough sleep. I have been taking Vyvanse and it has been a life saver over the years but now I’m starting to get used to it. I was recently diagnosed with IH and now I will hopefully start my journey with the medicine Xywav if my insurance company approves it. I’ve felt so alone for so many years, to the point that now I have almost isolated myself. I am a shell of who I once was. It’s nice to know that there are others that can relate to how I’m feeling. I remain scared….
Make sure that you drink alot of water too. I started seeing a chiropractor and after 3 months gained some energy back. I did baby steps and can slowly walk my dog and enjoy it now. I can also do some sit ups, lite arm wts, leg lifts, sqts for about 15 mins a day. I just do alittle a day. I started with easy yoga poses on the floor to stretch my body after I got up. My cognition sucks, short term memory problems, misplacing items, my sense of direction is terrible and I mispronounce words or say the wrong word sometimes. I love watching movies, youtube and reading books for my brain. It took 4 months for me to get to this point. I also live by myself and lost most of my family and 4 friends in the last 3 yrs as they died.. I only have 2 family members left & they live 3,000 miles away. I want all of us to be spontaneously healed 100% by Aug 1, 2023. Hugs! ❤
Dr. Emrich, Thank you for sharing!
This is so sad. I have a similar story. I got diagnosed with IH during medical school.
hii i want to ask, can the medicine you take keep you awake every day? Or do you still have symptoms of very severe sleepiness like before undergoing treatment?
Yes I take modafinil in combination with a nootropic energy drink which I take every morning or else I cannot function@@helloo1
Thank you so much for putting into clear concise words what so many of us are experiencing.
Thank you so very much for doing this. I hope I can share this with my family.
I currently lie in bed, unable to do anything but watch TV. My almost impossible chore today was to go see my granddaughter in her Christmas concert. As you say, it was a Herculean effort to get there, both physically and mentally. I was able to slip out after her class performed (hate having to do that) and was straight back to bed.
I am hoping to rest over the next few days as Xmas approaches, an event I loved but now dread. I hope you are in a plateau of symptoms right now and get to have some fun over the holidays.
I appreciate you sharing your story with us.
What you have described is my life.
Thank you so much for this video. I'm a PA-C with IH and you put everything I feel into words.
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
Thank you.
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.
Serotonin is the word I was groping for so actions that take place in the gut affect your serotonin levels
My prayers for you, dear one, that you will be joyful in every moment as you experience life as it is given to you. You inspire us. Thank you. 💐
Thank you so much ! This video explains how I feel, even if my sleepiness started with a strong EBV infection which triggered ME/CFS (which also my diagnosys as IH). How can I contribute to translate subtitles into Italian please ? About your "subset "with fatigue even for a 30 mins walk", it remembers my condition : IH and ME/CFS.
How, I was thinking Epstein Bar Disease might be the start of when my IH first started! I was 16 years old and so very very 😷, ever sense I have had sleepiness soooo much more that anyone ever my age. I am now 59 years old and definitely getting worse and worse. I was finally diagnosed 1 year age with IH! After 5 years of telling Dr.s how tired I always was and no matter how much I slept never felt rested 😞. I would fall asleep while driving and reading a book or watching TV! Always 🥱 tired. I had 0 Quality of life😞. Not all depressed but just everything exhausted me. I’ve been trying different medication for the past 1 year now with not much relief. This is a huge problem for relationships and work and actually EVERYTHING. It just Sucks
@@everythingismagic09sharon Exacly my case . Mono at age of 24 and ME/CFS with IH. Currently on Sunosi and Xyrem.
No, no. My IH I have had since childhood. Usually 18 hrs. If I try to work full-time -teacher- I can sleep on the weekends for 22 or 23 hours. In my 30s I caught EBV from my stepchildren. I had CFS/ME. Please don’t think it’s the same. ME is viral! I was cured and am writing a book. It took 22 months of Valacyclovir day and night to cure! Fatigue is different.
I've been asleep since Aug. I too have lost everything, had to give up on children, etc.
I have IH. I think my whole
Life but wasn’t diagnosed til like 36 and I’m 54. I have to have exact schedules and I struggle with brain fog, fatigue and confusion. I did raise my d levels to 70 and coupled with k2 (MK7), magnesium, a few herbs. I try to regularly eat dark veggies and I will say if I stay on top of my diet it’s better…noticeably when I raised my blood serum D levels. Not much helps…..I still struggle day to day. My daughter has it as well😔
hugs to you. I relate to every word
Thank you for sharing. Can you share what medications you took? What from your sleep study and MSLT lead to the IH diagnosis?
Just diagnosed
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?
I’ve had it since I was a teen. I was nicknamed Drowsy. I think because I had it for so long I have been able to manage it better than others who develop it later. I feel like a functioning zombie. I didn’t get diagnosed till decades later. I wondered why doctors never suggested a sleep study. It took my husband who annoyed me to get tested for sleep apnea (which I knew I didn’t have) to finally get a diagnosis. Like someone else with IH ‘Amy’ I too felt surprisingly awake during my two pregnancies. How do you explain that one.
You just described my life to a T!
,
Thank you so very much for sharing this video 💓. I love how everything is worded, because it helps me to explain myself to my family and friends that just don’t understand what I (we)go through. You say everything so perfectly. Thank you so very much 🙏🏻🙏🏻🙏🏻.
I was thinking Epstein Bar Disease might be the start of when my IH first started! I was 16 years old and so very very 😷, ever sense I have had sleepiness soooo much more that anyone ever my age. I am now 59 years old and definitely getting worse and worse. I was finally diagnosed 1 year age with IH! After 5 years of telling Dr.s how tired I always was and no matter how much I slept never felt rested 😞. I would fall asleep while driving and reading a book or watching TV! Always 🥱 tired. I had 0 Quality of life😞. Not all depressed but just everything exhausted me. I’ve been trying different medication for the past 1 year now with not much relief. This is a huge problem for relationships and work and actually EVERYTHING. It just Awful
Still struggling daily
Hello Michelle, how are you feeling now? Have any new drugs come available that are helping you?
....I have had IH since 2012 after surgery for a brain tumour. Only just been through a SLT and now awaiting an appt. Do you also suffer from thermoregulation issues? (Debilitating ,uncontrollable, body heat)
Best Wishes ,
Catriona (UK)😅
Have you tried taking extensive drug holidays and switching brands of stimulants? I sleep after 400 mg of modafinil , Ian finding even a week long drug holiday doesn’t make a difference now. Taking circadian at night and gabapentin helps someone as does only eating protein in the mornings even a bit of carbs are enough to send me dosing
Another must read author is pass it book is passages she has two books actually and I think you might like that because her research is amazing so I don't know why her book helped me so much and coming to appreciate my humanity it's flawed as it is but please consider these books and ask your friends for other books just talk to as many people that are trustworthy is possible in your therapy in your treatment and your recovery plan and be sure to not never neglect your spiritual health and that goes with your body your eating for some reason I found a study that talks about actions to take place in your gut the effect the levels levels in your brain so if your intestines contribute to your healthy brain chemistry go figure there's so much research out there that no one doctor could scoop it all up so don't feel overwhelmed just enjoy the recovery enjoys the road thank you
What caused her ih? Stress?
Do you think that this was caused by a virus or bacterial infection?
Neither. There's no known origin, that's why it's idiopathic.
I'm tired of the microphone didn't pick that up it's b Renee Bren and I also had a lot of success in finding a reason to pray and meditate reading Gandhi and Annie Lamont is a hilarious writer who will bring you bittersweet tears of in recovery she's a hilarious writer the story about raising her son I read it in a day and probably I I gave away that book knowing I would never get it back and I hope 100 people have read it
But being a doctor may know that already and you may know everything that I've said already but please consider my advice
Denas machine....stem cell Mexico...... You are so. Brave you must be lost.....back everything up.... Record phones so you remember..xxx
Sounds like a mold allergy. Not necessarily black mold, there are many that cause crippling illness. Have you had your living space tested?