Meghan Mallare - "Sleeping My Life Away"
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- Опубліковано 4 жов 2024
- Meghan Mallare is 26 years old and from southwest Virginia. When she is not sleeping her life away, she works part time as a medical scribe and enjoys cooking and spending time with her puppy. In this video, Meghan describes the profound impact idiopathic hypersomnia has had on her life. She shares the long journey to diagnosis and the misconceptions surrounding this condition. She also describes the emotional, physical, social, and professional difficulties of being a young adult living with IH.
I’m 28 years old and my symptoms are even worse than yours 😞 I sleep for 24+ hrs and even if only up for a few hours after, I’ll sleep again for 16 hrs. It’s ruined my life. I can’t commit to anything.. Everyone thinks I’m lazy. I have constant headaches and almost feel as though my brain has tremors or something it’s such a bizarre feeling. I can’t keep relationships or jobs. I feel like a failure and can’t do anything. Thank you for making a video I at least don’t feel so alone. I really wish you the best and pray for a cure for this
Oh wow. I'm sorry it's been that severe. I am getting tested next week for narcolepsy but I believe I have IH. It is terrible.
I’m 17 and I deal with exactly what you described. It is very difficult to deal with, especially with school. but it’s good to know that none of us are alone and there people out there that understand what we go through
Same here friend:/
This has been my entire life too. No one understands except those of us that have it. It’s not a life at all.
I understand how Meghan's story could sound absolutely unbelievable to the average person, but not to me. IH is real and as she stated it absolutely does affect every aspect of one's life. I fully believe better medicine is on the horizon for people like us. And thanks to the Hypersomnia Foundation we're being recognized, justified, researched, studied, and stood up for on countless platforms so we can have a better life. I am grateful.
Thank you so much for your kind and heartfelt words. Meghan's story resonates with so many people living with IH. This is what inspires us at the Hypersomnia Foundation to continue raising funds for increased research that will lead to faster diagnoses, better treatments and ultimately, a cure.
@@HypersomniaFoundation Hi! I just saw this and have been told I’m one of the lucky few this happened to, but I was diagnosed within 6 months of my symptoms appearing. You are making a difference : )
@@HypersomniaFoundation And to add to the fact, the diagnosis was indeed correct and I have been still trying to manage the symptoms for about two years now.
My wife and I fight constantly because she thinks I should just be able to change positions on the couch to stay awake. Or just get up and move around for a little bit. She gets mad because I can't watch a movie with her. This thing can be hell on ALL aspects of your life.
"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.
When she said she loved to learn but IH affected that...I FEEL THAT HARD. I felt so many things she was saying, like narcolepsy meds not working and comments from other people that don't understand the extent of the fatigue. Thankfully I don't think my IH is as problematic as hers (I'd estimate I experience 3/4 of her experience), but I hope it doesn't worsen.
My experience, in a nutshell:
I have ADHD in addition to IH and I feel like whenever I'm not sleeping, I'm wasting my time trying to focus. Then I get so mentally exhausted, the sleep hits me. Its like I'm getting punched by one person, then another person takes over punching me while the other guy rests. Adderall works 50 percent of the time and even then I have to be incredibly mentally stimulated while on it.
I'm 31 years old going to school for molecular biology and I'm bombing my junior year because I'm not studying the content that I love learning about. I'm not playing my videogames or reading my books, or playing my musical instruments. My apartment is such a mess that I've had mold growing on my dishes. This was not my life when I was 24. It became the norm when I was 28 and now I turn off all my alarms in my sleep, even when I place them all around my room (I've used Alarmy and made it so I couldnt turn off my phone when the alarm when off, but then I put a pillow over my phone so my neighbors couldnt hear it and I slept right through it because I can sleep through almost anything).
My mom died of breast cancer when she was 26. I feel like I died at the same age because thats the age I was when I started sleeping my life away.
Fellow IH people--hang in there ❤ WE'VE GOT THIS
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.
Thank you for posting. This describes perfectly the condition my daughter is experiencing, rather has been experiencing, for the past 20+ years without diagnosis. We have no idea where to go from here. Her doctor has recommended that she apply for disability but I think she needs some kind of medical treatment because she too is sleeping her life away. Linda Keller, Bartlesville, OK
Hope your Daughter is doing well!! Looks like you commented a year ago.. I was curious, did your daughter end up applying for disability? ( if you don't mind sharing lol) The reason I ask, I've heard time amd time again, case afer case, that the folks from the Disability offices dont believe suffering/living with IH or Narcolepsy is actually a "Disability" therefore they are denying those who Apply.. even if that person has been properly diagnosed with IH or Narcolepsy.. I was diagnosed with IH 2yrs ago.. I dont understand how they don't believe this is a disability!! The obvious reason, for so many suffering with IH, maintaining a Job can be extremely difficult!! Anyway, sorry for the long message lol 😂🤘
My heart goes out to this young lady. I was fortunate in that my IH did not come to the level of being disabling until I was 40, but I can't imagine what it is to be only 26 & dealing with such severity of symptoms. Praying that answers can be found through research, yielding effective treatments to try & give us more of our lives back. 😔🙏🏻
Same here, my sleep can peek up to 20 hours a day. I have tried everything to gain my energy back but to no avail.
I never knew there were others suffering this. It’s so awful. I need like 10 alarms to get Up and still I oversleep. A career is not even in my sights due to this problem. It’s hard
You're not alone. Thank you for sharing your story.
I am truly sorry many physicians dismissed you as depressed, etc. Your perseverance, determination to get up every day is truly heroic. You are a role model for anyone and especially a young adult dealing with a crippling chronic disease.So impressed! No words.
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 am desperate to find a Hypersomnia expert
I hear and feel her. My life has been devastated due to long sleep patterns. Two LTR gone to trash. Who wants to live with someone who falls asleep at every corner of the house.
Diagnosed with IH today. This made me cry. I relate with so much of this.🫂
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?
Diagnosed 2002. I was on a cocktail of stimulants over the years until my symptoms suddenly improved! Of all things, MENOPAUSE has made me realize how truly sleep deprived I was.
I'm so sorry that you are going through this. I came here because I think I might have IH. I recently had a sleep study done because I thought I might have sleep apnea. Maybe I have both sleep apnea and IH. I didn't mention that to the sleep disorders center when I was there, so I hope that they know to look for IH and not just the apnea. Like you, I'm tired all of the time and it's such a struggle to get out of bed. I never ever feel rested. It's very depressing to have this. I don't know what to do. I hope that yours gets better or goes away. It's sad that you're so young and have IH. I guess it's sad at any age. Unless a person has this, I doubt if they have any idea what a struggle it is for us to drag ourselves though the fraction of a day that we're out of bed.
I feel so sorry for you. How are you now?
thanks for the testimony, congrats for the courage of sharing
There seems to be a common thread that sufferers tend to be very intelligent high achievers. Perhaps the brain gets exhausted from this?
It would be worth investigating
She says at 7:00 that she has memory issues. Personally its not the case, except for auditive memory (due to lacks of concentration).
Thank you, Meghan for sharing
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, I feel everything ur going through!
Thanks for sharing.
I’m just discovering the world of IH today and after watching this I’m convinced I have it. I just talked to my psychiatrist about getting a sleep study because they need to rule out other things but almost all the symptoms of IH describe me. I’m a senior in highschool and my symptoms started developing last year. However I’m worried after finding out that they don’t know what causes it so it’s hard to prescribe medications for it and now I’m not sure I’m glad to know I might have it, if there’s nothing that can really be done.
The challenge of dating is so real. I struggled through dates.
What is the medication she took that made her wake up well?
Probably amphetamines
pentetrazol
I’m so sorry to hear of fire struggle. How are you now?
Not alone, I'm doing this and I'm 35
What is the name of the clinical trial that you were in? I could not understand the name of the medication you said.
pentetrazol
What drug did.u say?
pentetrazol
NO, FAIZUL WILL SAY, SAVE MY WIFE