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A Very Frustrating Disability- Idiopathic Hypersomnia

Hello everyone. I am new to this site and just wanted to share my story and hope to give you all some hope. I am currently 22 and suffer from Idiopathic Hypersomnia. It started when I was around 14. I was in highschool, my sophomore year I believe. I started sleeping, a lot. I would wake up, go to school, sleep through ALL of my classes, come home, take a nap, go to cheer practice, come back home, and go straight to bed. On the weekends, I was sleeping constantly. I could sleep for 14 hours a night, wake up, and take a nap 2 hours later. I went to doctor after doctor and they all blamed it on me just being a teenager. They did not want to understand the pure exhaustion I was sufffering constantly! When I was awake, it was a battle to keep my eyes open every second. You know the point when you're soo tired you can barely keep your eyes open? That's how I felt ALL the time. Doctors said I slept through classes because I was bored, and I slept at home because I was bored. I was involved in cheerleading, and practiced everyday; when someone exercises daily, they're supposed to be more awake; not me, obviously. I lived everyday like I was out of my own body.. like I was physically at school, at cheer, but not mentally or emtionally. I also suffered from depression and memory loss. I was so depressed because I had no motivation or energy for anything life. Emotions, mental, physical activity or stress just blew right over my head. I did not even have the energy to care about my depression. It's almost like I had no feelings at all; because I didn't have the energy to feel. That sounds so crazy, and you only understand if you suffer from it. I literally didn't have the energy to be happy or sad or mad; I was just empty. I couldn't remember anything I learned in school, because I was sleeping through class. I had terrible grades. I couldn't keep a job. And all my relationships started crumbling. My friends never wanted to be around me because I would just sleep. My boyfriends didn't work out because they thought I was just lazy and didn't care to understand my issue. The only relationships that stayed were the ones between me and my family, they were the only ones that saw everything happening to me and how my energy and charisma had drastically shifted. After 8 whole years of suffering and trying to get by, I finally found a doctor who cared enough to listen and help me. His name is Dr. Jeremy Cole in Edmond, OK. He diagnosed me with Idiopathic Hypersomnia and told me that it is considered a handicap as well as a disabillity. He perscribed me Adderal which I take daily. It helps, but I still suffer memory loss. I feel depression every once in a while but my ability to feel and have feelings has restored. I am now working a full time job at a law firm and also coach cheerleading at a competitive gym where my disorder hardly interferes. I know it's so tough, and I know how frustrating it is. People tend to believe that sleep disorders are nothing serious. And they will not understand what we go through unless it happens to them. People assume that we are using a sleep disorder as an excuse when in reality, it is a disability. We are handicapped. So, I know it's hard and I know you feel like you're nothing sometimes. It's probably even been hard for you to concentrate on this whole post. But I promise, there is a good doctor out there who cares and who will help. And there are people who suffer the same and can give you support.
God bless yall!
CaseyGirl CaseyGirl 22-25, F 6 Responses Nov 9, 2012

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Join the Idiopathic Hypersomnia facebook group. It is full of friendly and helpful people who are in the same boat as you and you can have tons of valuable information at your fingertips!

this sounds crazy. i have been diagnosed with sleep apena and severe hypersomnia and some of the meds help a little but never enough. taking naps at work always tired. i am as well on a bipap machine at night for the sleep apnea the dr says they can see it working the way it should but i guess the hypersomnia is the troubled part. ive tried ritaln concerta provigil vyvanse xyrem nuvigl adderal both long lasting and short acting dextromine i think is another none have which worked very well for me and these are in combination with the bipap and supportive wrist wraps at night as well because he tested me for carpatunnel and have that as well. also diagnosed with diabetes type 2. right now currently on sick leave for a groin hernia repair so i have tested a few things myself. current meds. 3000mg viamin c. meds for high cholesterol fish oil meds for heart burn, recently physc put me on effexor supposed to work with the provigl as well as the klonopin im taking at night to goto sleep. strange cant stay awake during the day but have a hard time falling asleep at night. anyways. taking all meds and wrist wraps i still sleep through alarms and most thing however wake up throughout the night when i hear something like the dogs playing with something but sleep past alarms. with all meds taken and wrist wraps and bipap i seem to stay asleep a majority of the night wake up little to none. but either way i do this bipap or not still feel the same when i wake up. using bipap still sleep through the alarms. well my thoughts were well maybe im getting used to that alarm so i change the tone and even different alarm clocks that are supposed to be louder. neighbors hear the alarm clock but not me.

crazy stuff, still havent found a treatment that works all that great. i understand i may never be 100% wide awake all day but i guess i expect using these treatments that i wouldnt be taking naps during the day.

i usually drink alot of coffee it helps a little. since being out of work and not being up to get up much i havent made much coffee but cutting out the caffine didnt seem to really help made it worse.

what really gets to me is i have a 3 year old daughter and almost everyday she asks me daddy are you tired, it breaks my heart everyday to tell her yes daddys tired again. i 100% understand the no energy no motivation the always tired not being able to do many things how go you get your 3 year old to understand its hard enough getting my wife to understand and shes a medical assistant but its like she gets it then she doesnt but who knows im sure there is other reason there.

anyways i dont know how these message board things work but im on facebook jonathon fulford if anyone wants to talk about this or what they are going through

The really bad part about our handicap is nobody can see it. We dont need help walking,talking, eating, or bathing. Thats the hardest part is because even the ones close to you may forget or just think that you're still able to do the everyday things. Thats where im struggling. Plus I have a combination of sleep apnea, rls, and idiopathic hypersomnia.
Luckily I have got closer to God. Im not cured, but he does help.

When u say u don't have the energy to feel emotions I know exactly how u feel. I thought I done went crazy

Have you ever been checked out by an Endocrinologist? I was in the same position as you and am now 34. Mine started at 17. Idiopathic means they don't know whats wrong with you so that's what they call it. Eventually, the stimulants will stop working as you get used to them. If you have not seen an Endo, please do and beg and plead for an IGF-1 test which is the precursor for the growth hormone. At around 14, you would have started producing less of this hormone because your bones had finished growing. Growth Hormone Deficiency causes disabling fatigue, the daytime sleeping, and later on many, many, many more problems. After 17 years, I was finally diagnosed and started growth hormone injections six weeks ago. I'm already starting to feel better but it can take 1-2 yrs to bring my hormone level up to that of a "normal" person. Mine was so depleted and I was not making any myself. So please, please, please continue to find out why you are where you are. I refused to accept an unknown diagnosis or chronic fatigue syndrome, fibromyalgia, etc... I wanted answers. And I finally got them.

I totally understand what you're going through. My family has been my rock and without them I would truly be lost. I'm glad that you have them and now this to vent to because I know how hard it can be to get people who don't have a clue to understand. I'm rooting for you.. Just keep pushing!!