Waiting For My Happy Ending

I'm 22 years old, and have been dealing with hypersomnia since fall of 2008. I'm not sure when I developed it, up until that point I was taking a medication for bipolar disorder for four years that would essentially knock me out, so who knows how long it was masked. My doctor switched me to something different so I could function better in college, and for a month after I was finally off it I was able to stay awake at night, which I wasn't used to since I passing out 15 minutes after taking meds was normal to me. But once I started classes I started getting tired again, which was confusing because there were no side affects of any of my meds that could cause this, and I knew it was more than just being in college. I could barely wake up in the morning, fought like hell to keep my eyes open in class, and nothing I did helped. I got sick of coffee, sick of staring at bright lights in class thinking it would keep me awake but I just got really bad headaches. I worked so hard to get into art school, had amazing grades in high school, yet now I was barely passing my classes because I couldn't finish my work on time and I was so drained. Art school is brutal. If you don't finish an assignment, everyone knows because you get critiqued daily, so if you come to class with half-done work, it's just as bad as having nothing at all. I went from being in a constant state of shame to being emotionally numb to it because I got used to failure.

It wasn't until my second year of college that I finally had a sleep study done. None of the primary care doctors did anything constructive up until that point. I told one doctor I was so exhausted that I would get headaches and nausea, so he said I must be pregnant and had me pee in a cup (as if that's the only cause of nausea in women *sarcasm*). Other doctors took blood and said I'm normal and to just get on a better sleep schedule. It wasn't until a friend's mom told me to find a neurologist and get a sleep study done that I even thought it might be something like narcolepsy or sleep apnea. My first study was in 2009 and the doctor concluded it was idiopathic hypersomnia and that I should go on Provigil or Nuvigil. Problem was I couldn't afford either one of those so I was put on more affordable, ADD stimulants instead. While it may work for some people, it was disaster with me. Every med they tried would stop working, and half the time I was dizzy and had a rapid heart rate after taking it. Eventually I dropped out of school, and pretty much dropped out of life.

At the end of 2010 after being out of school for while, I got on a medication that worked alright for the time being, so I got a job because I didn't want to get behind on my student loan payments which were looming over my head now. But eventually that medication stopped working and I just couldn't function at work, or manage to get there on time for that matter. I was unemployed for almost five months and the hypersomnia just kept getting worse. I starting keeping a sleep journal to record the times I would feel sleepy, when I would lay down, and when I would wake up. I averaged 18 hours a day. Once I slept 22 hours, then got up for a half an hour before going back to sleep, which scared the crap out of my mom. I would still take my medication hoping it would just "kick in" but I just slept more and more.

Last September I was finally able to afford the Provigil and have been taking it ever since. But I'm terrified that soon I won't be able to afford it, or it will stop working like the rest, but as far as I can tell it has worked better than anything. My life is a mess by now despite being on this amazing medication, because I am an emotional wreck, can't keep a job, my credit tanked when I was unemployed, and I'm never going to be able to go back to art school. I'm trying to be optimistic but it gets harder every day. I have lost so much over the past four years.
geekyraven geekyraven
22-25, F
4 Responses May 14, 2012

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!

Well, I'm not sure where you live but, in many countries it is legal to buy Modafinil without a prescription and it can be purchased online at quite a reasonable price. Just be sure to buy from a reputable vendor.

I hope the Provigil keeps working for you. It no longer works for me.

Thanks, I hope so too. I was on the lowest dose for at least 5 months and doing well before I had to increase, which my doctor says is a good sign, since her other patients typically have to increase after just a few weeks.

Hi I feel your pain. IH does ruin your life (Im in bed in the middle of the day typing this on my phone because Im in between dozing and yet Im fully tanked on amphetamines), but i cant help thinking that if society - especially the people closer to the situation (doctors, our loved ones etc) had a better understanding of the problem, if they actually realised and acknowledged how disabling this hideous condition is for us then maybe just maybe we wouldnt suffer so greatly. I often come across pessimistic but only to those that cant except the truth and the truth is if you have SEVERE Hypersomnia you cant go to art school, or pretty much any other school either and you cant have a job that dictates when you start and finish or has deadlines either. I get sick & tired of saying i cant do that (could be a request to do something simple on top of an already, for me, busy day or it could be something more complex like an itinerary for a holiday) to my husband or someone else close to me because the response is always, why?<br /><br />
Just briefly (i havent got around to posting my story -its depressing to go over 25 odd years of this, but you may notice some of my other comments around here) - Im 40 and have suffered hypersomnia from at least my teenage years. It has got worse over time. It got A LOT worse once i fell pregnant with my 1st of 2 children in 2003. I was diagnosed and started medication in 2008. I live in Australia so Im on amphetamines (we either have that or modifinal and thats it) and Im sure just by the name of my meds my husband expects more from me. But i cant get him or anyone else that knows what meds i take to understand its not like a normal person taking 'speed'. Geez i can take a hand full of my meds and still sleep. My husband was worried i may become addicted or abuse the meds. Um, hello! You cant abuse medication that does little for you. In other words i could take a hand full but why would i bother? I dont get many side effects - but if i take more meds on top of a normal dose in the hope it will keep me from falling asleep at a time my brain is already shutting down but i NEED to be awake all it will do is cause my mouth/jaw to move about a bit and my brain to think over time but i cant physically do anything because its not long before i will fall asleep.<br /><br />
So the bottom line is (and this is said with over 20yrs experience) we beat ourselves with a rose bush pushing ourselves beyond what we are capable of to please others and live up to the expectations society place on able bodied and minded people. WE need to acknowledge as much as the rest of the world that we are NOT able bodied OR minded people and that its no more discriminatory to expect a person in a wheelchair to climb stairs as it is to expect someone with severe hypersomnia to stay awake past a time they really should be asleep. Yes IH ruins your life because there is no dedicated medication designed to effectively treat the condition so if we all could just be allowed to accept that AND for the rest of society to accept it we wouldnt get ourselves into years of stress that result in trouble with students loans and bad work histories etc.<br /><br />
With no known medication that is designed to treat the condition not just the symptoms it is highly likely that you will run out of mediation that is as effective as you would like it to be or that is as effective at all. Its ok to want to stay positive and never give up hope - i havent given up hope, but i accept my limitations now instead of killing myself trying to push beyond them.

I can't even imagine what it must be like to have suffered with hypersomnia for as many years as you have... Which is something I dread myself, seeing as how I'm only 22 and already off to such a great start *sarcasm*. You're right, nobody understands. They can try to, and I hold on tight to the ones who support me no matter what. What hurts is when people you thought really cared, never actually understood in the first place. My ex-mother-in-law kept referring to it as insomnia and that I just need to get sleep and then I wouldn't be so tired. HA! Then when my fiance left she accused me of not noticing there were problems in the relationship because I was "asleep all the time". I've resorted to just referring to what I have as "a form of narcolepsy" because people seem to understand what narcolepsy is, but when you try to explain hypersomnia to them, they just confuse it with insomnia. "So you're not sleeping enough?" Makes me want to scream sometimes.

LauraAshley - I hear you! I was told so many times by doctors to just "eat right and exercise". Yeah right! My now ex husband just thought I was lazy. I pushed SO HARD and took so many pills to do what was so easy for him. People, including most doctors, don't get it at all. So doctors I saw concluded I just had a depression issue and I was misdiagnosed and struggling most of my life. I am so glad I finally found a doctor who understood what was really going on. But now I'm totally wrecked. I really hope there is more knowledge about this now so that young people like geekyraven get the help and understanding they need. So glad people finally know it is a medical condition, not a moral shortcoming.

Its encouraging that I have found a lot of the other IH sufferers I've met online are so young (the average age being 22-23). With an early diagnosis they have a much better chance at managing this condition so that they can get as much out of life as they can possibly expect to. When I was 20 the illness “in vogue” was Chronic Fatigue Syndrome or the “yuppy flu”. When I presented to my doctor (&amp; several others) I was treated like a hypochondriac looking for a diagnoses to keep up with the latest fashion!! However there still needs to be A LOT of education out there for all those involved, not least of all the doctors. My local GP hands out my meds (I’m not under the care of a specialist – the last time I saw him he told me there was nothing more he could do for me). My GP has no real idea about my condition at all &amp; as a GP I don’t really expect her to - but she is supportive, she believes me &amp; that’s enough for me now after years &amp; years of facing, at times horrible, judgmental doctors. As I’m sure you will agree this condition is really something you have to experience to have a proper understanding of it so even the best doctors will always be in the dark. The one thing I would urge all doctors &amp; young IH sufferers is listen to the older people who have suffered since their teenage years. Our stories are all too familiar – this condition DOES GET WORSE OVER TIME. So my message is “don’t waste a minute of your young life, what you are capable of doing now, you will NOT be capable of doing when you are 40, or even 30”. I was 41 this year &amp; as the years go by I find myself deteriorating at a rapid pace. Its no longer just about being tired all the time, about falling asleep at inappropriate times &amp; places. Its so much more. The grumpiness &amp; irritation caused by the chronic sleep deprivation, the poor memory, trouble concentrating, the clumsiness (i bump into or misjudge fairly obvious things like doorways or stairs). I suffer with postural hypotension, my motor skills &amp; cognitive function leave me looking like I have some form of mental retardation or a drinking problem! I shudder to think what my life will be like in another 10 years.