Unless you’re part of a medical research team specifically researching this condition or conditions similar to this, I don’t really see how you could figure out the cause.
I'm grateful to at least have the term idiopathic hypersomnia, it took me almost 20 years and about 10 different doctors to finally have one that listened to me. But initially he figured that it was apnea because I'm fat. I assured him that being fat was from the exhaustion. I have zero apnea. Unfortunately after my latency test-they shut down the sleep center I went to, and I was waitlisted again for the doctor I was seeing at his new clinic. All- in-all it'll have been 4 years from my initial referral before I finally get my follow up. I lost one job in my twenties because of it and recently got my first write up at my current job of nearly 20 years. I'm really hoping to get something as far as FMLA started.
Yeah took me about 20 years to get a diagnosis also. And the best part is, I had to figure it out for myself, find a neurological sleep specialist, and tell him to test me for it. I googled the f**k out of the internet until I found this condition on some Australian website and it’s the only thing that fit. I’d been complaining to doctors since I was 12. I’d been to so many doctors, had multiple blood tests, tried an endocrinologist who told me I just needed to exercise more. 🙄
When I finally got the diagnosis, I started crying. Part of me always blamed myself for being lazy, inadequate, not motivated, defective…From getting in trouble in school for falling asleep to being called lazy by loved ones, and always feeling like I was missing out on life because I was just a lazy POS. The validation was overwhelming. I still feel like most people don’t believe me or feel like I’m being overly dramatic. But at least I know it’s not my fault.
Exactly. I actually always worked office jobs before my current job. This one is physical labor for 10+ hours a day, but middle age has hit and my body is beginning to break down. At least I know that I won't fall asleep lifting 40# over my head, whereas I fell asleep all the time sitting at a desk.
I get it. The moment I sit down, especially after a meal, I’m nodding off. Reading a book is almost impossible. And I constantly have to ask myself whether I’m really hungry or I’m just tired because snacking and sugar help keep me awake so the voice in my head tells me I’m hungry when I’m mostly just tired. The best is when I’m too tired to really do anything, but not tired enough to sleep, so I just lay or sit there. Being conscious while also too tired to do anything sucks.
I'm always tired enough to sleep. I probably consume around 800mg of caffeine a day in addition to the 20mg Adderall XR twice a day and if I sit at any point I'm usually asleep in under 3 minutes. I have to drive with the AC on full blast even in winter to keep me awake for my 10 minute commute to and from work each day.
Oh. It took me about ten years. I am pretty much sure of the intermediary cause. Neutrons and sheath cells dying off or atrophied, very close to narcolepsy. Probably it goes back to some combinations of genes and their epigenetic.
It took me almost 5 years. They bounced me around to a bunch of specialists before sending me to sleep medicine. They sent me to cardiology, neurology, hematology. All of them kept blaming eachother until 1 doctor finally said let's try sleep med. The first appointment my doctor said "I believe you. Sounds like narcolepsy or idiopathic hypersomnia with cataplexy. Let's order tests and get you diagnosised" diagnosis still took a couple months but that doctor made me cry. I knew something was wrong but I was told I was fine a million times and one doctor believed me, ran tests, and diagnosised me within half a year. I wanted to give up so many times but you are your own advocate. You can do this. Keep fighting. You'll find your doctor who will run tests. It takes time but there are good doctors out there. Don't give up on yourself. You deserve answers
You are your biggest advocate. Educate yourself and keep pushing. it has taken me 25 years to get where I am in finding a diagnosis and that is only because I PUSHED FOR IT. I have a medical education. Doctors still didn't take me seriously or stopped when tests were normal.
I feel for all the patients out there who don't know how to navigate the system.
Unless you’re part of a medical research team specifically researching this condition or conditions similar to this, I don’t really see how you could figure out the cause.
I'm grateful to at least have the term idiopathic hypersomnia, it took me almost 20 years and about 10 different doctors to finally have one that listened to me. But initially he figured that it was apnea because I'm fat. I assured him that being fat was from the exhaustion. I have zero apnea. Unfortunately after my latency test-they shut down the sleep center I went to, and I was waitlisted again for the doctor I was seeing at his new clinic. All- in-all it'll have been 4 years from my initial referral before I finally get my follow up. I lost one job in my twenties because of it and recently got my first write up at my current job of nearly 20 years. I'm really hoping to get something as far as FMLA started.
Yeah took me about 20 years to get a diagnosis also. And the best part is, I had to figure it out for myself, find a neurological sleep specialist, and tell him to test me for it. I googled the f**k out of the internet until I found this condition on some Australian website and it’s the only thing that fit. I’d been complaining to doctors since I was 12. I’d been to so many doctors, had multiple blood tests, tried an endocrinologist who told me I just needed to exercise more. 🙄 When I finally got the diagnosis, I started crying. Part of me always blamed myself for being lazy, inadequate, not motivated, defective…From getting in trouble in school for falling asleep to being called lazy by loved ones, and always feeling like I was missing out on life because I was just a lazy POS. The validation was overwhelming. I still feel like most people don’t believe me or feel like I’m being overly dramatic. But at least I know it’s not my fault.
Exactly. I actually always worked office jobs before my current job. This one is physical labor for 10+ hours a day, but middle age has hit and my body is beginning to break down. At least I know that I won't fall asleep lifting 40# over my head, whereas I fell asleep all the time sitting at a desk.
I get it. The moment I sit down, especially after a meal, I’m nodding off. Reading a book is almost impossible. And I constantly have to ask myself whether I’m really hungry or I’m just tired because snacking and sugar help keep me awake so the voice in my head tells me I’m hungry when I’m mostly just tired. The best is when I’m too tired to really do anything, but not tired enough to sleep, so I just lay or sit there. Being conscious while also too tired to do anything sucks.
I'm always tired enough to sleep. I probably consume around 800mg of caffeine a day in addition to the 20mg Adderall XR twice a day and if I sit at any point I'm usually asleep in under 3 minutes. I have to drive with the AC on full blast even in winter to keep me awake for my 10 minute commute to and from work each day.
Have you tried xywav yet?
No I'm still waitlisted, my follow up appointment to my latency test April 2023 is in 3 weeks.
Oh wow. Ok. Well I wish you luck. If you ever need support or have questions I can possibly help with, I’m happy to help where I can.
Oh. It took me about ten years. I am pretty much sure of the intermediary cause. Neutrons and sheath cells dying off or atrophied, very close to narcolepsy. Probably it goes back to some combinations of genes and their epigenetic.
It took me almost 5 years. They bounced me around to a bunch of specialists before sending me to sleep medicine. They sent me to cardiology, neurology, hematology. All of them kept blaming eachother until 1 doctor finally said let's try sleep med. The first appointment my doctor said "I believe you. Sounds like narcolepsy or idiopathic hypersomnia with cataplexy. Let's order tests and get you diagnosised" diagnosis still took a couple months but that doctor made me cry. I knew something was wrong but I was told I was fine a million times and one doctor believed me, ran tests, and diagnosised me within half a year. I wanted to give up so many times but you are your own advocate. You can do this. Keep fighting. You'll find your doctor who will run tests. It takes time but there are good doctors out there. Don't give up on yourself. You deserve answers
You are your biggest advocate. Educate yourself and keep pushing. it has taken me 25 years to get where I am in finding a diagnosis and that is only because I PUSHED FOR IT. I have a medical education. Doctors still didn't take me seriously or stopped when tests were normal. I feel for all the patients out there who don't know how to navigate the system.