Officially Disabled And Running Out Of Steam....

April 12, 2010


I'm now 42 going on 80.  I didn't think much of it when I fell asleep all the time in High School, but I did start to look into it after a couple of years of trying to get through college by sleeping through class and sleeping on my homework.  At the advice of doctors I dabbled a little with prescription stimulants in the early 90's, and was on them continuously from about 1994 until this past december.  I was diagnosed with Idiopathic Hypersomnolence (tired all the time and we don't know why) by Mayo Clinic in 1996, but have continued to beat the subject to death until a couple months ago when another highly regarded sleep specialist ran out things to try and went back to the IH diagnosis.  When I started seeing my psychiatrist to manage my meds a couple years ago he was not comfortable with the fact that I was taking 45mg of stimulants a day.  When I quit the stimulants as part of 2 weeks of preparation for my last sleep study I was taking 90mg of adderal a day with minimal effect.

I had been working as a carpenter for the past 13 years because I couldn't sit down at a job and use my education without falling asleep, and this past august my very patient employer ran out of patience and laid me off when my lack of productivity could no longer be ignored.  After my wife and family started pushing me to look into Social Security Disability I started talking to people about it and most people figured it would be a tough one, a hard sell, to expect to get rejected, (like EVERYONE does) to need a lawyer, and take at least a year to get through.  Well, I must be a basket case because I sent my paperwork in myself, my file sat on a desk for 2 months while the person handling it went on maternity leave, then when she was done with it it was randomly selected for quality review which took another month, and I got my first check almost 6 months to the day after my application.

I remarried 9 years ago, and we proceeded to pop out 4 beautiful girls on top of my wife's (now 15) son who lives with us and my son (now 16) who lives with his mom in IL, and I don't know what is the bigger problem for me - my IH problem or the fact that my wife thinks she understands it when she obviously doesn't  have a clue.  Our marriage has never been the best, but it has declined rapidly over the past couple of years due to my inability to perform as a husband and father and the only reason she is still here is because she can't afford to buy a house for her and the kids and I refuse to leave my kids.  Right now my kids are the only thing keeping me alive, but if my wife does move out my time with my kids will be limited because she doesn't trust me to take care of the kids by myself because of the tiredness.  My stepson shares my wife's viewpoint, and since him and my son communicate daily my son, who has always been understanding and mature way beyond his years, will no longer answer or return my calls.

I am a die-hard optimist and I have always been one of the most highly motivated members of a  family that consists of the hardest working people you could ever meet, but I don't know how to keep going anymore.  I'm so tired of hearing "yeah I'm tired alot too" from people who consider being tired to just be a lack of energy when my world consists of relentless misery. 

When it comes to a problem like this, understanding lies in a tiny little space between pity and disgust that is too small for almost anyone to see in.


April 21, 2010

I've been using standard prescription stimulants starting with Ritalin, most of the time on various forms of dextroamphetamine, and the past 3 years on Adderall which is a combination of the 4 forms of dextroamphetamine.  To some extent these are like loading up on caffiene, but they do help and don't have much for side effects as long as you don't take too much.

I had been off of them for 4 months and really didn't want to go back on them because I figured my body would just get used to them again, but a few days ago I called both my sleep specialist and my psychiatrist about going into inpatient care for my depression (caused by the tiredness) and hoping for some coping skills for feeling like crap every second of every day, dealing with the fact that I will probably be losing my kids because of it, etc.  Both of them told me I needed to go back on Adderall just to keep going, so I did.  My head is still foggy and feels like crap, and I still don't think I'd be able to maintain a full time job, but at least I have enough energy to get some stuff done around the house, making me feel a lot better about life.  I haven't made a dent yet as far as making my wife want to stay, but who knows.  I also expect to be starting a part time job in a week or two that will have a flexible schedule so I can work around my tired cycles.

One more note.  One night about 3 years ago I was working late and at about 7:10 p.m. I stopped.  Holy s***!  I was wide awake!  My head was completely clear!  I put my stuff down and just walked around experiencing the feeling of viewing the world with a clear head and assuming it wasn't going to last forever.  Wondering...." wow.... is this how some people feel all the time?"  "This is AMAZING!"  The only way I could compare it to my normal existence was wondering I would feel like that if I took some real illegal drugs.  Then it was over.  Back to reality.  That was the only time in my life that my head as been clear and I don't think it's going to happen again.


HyperZombia HyperZombia
41-45, M
23 Responses Apr 12, 2010

I am going through the same thing right now. I just got fired from my job because of it after I worked my way up the ladder. As soon as my health was discussed with them, I was fired. I filed for disability yesterday and I hope I have the same luck. I understand everything you have said because it directly hit on my life too. This condition is absolutely miserable and affects every part of your life and NO ONE understands. I also had an awake feeling not too long ago and it was amazing! Didn't last long but I enjoyed it while it did. It was so amazing that it brought me to tears because I was like finally!!! Relief!! Normal for once!!! Thank you for sharing your story.

As I have said below, anyone who struggles with IH should join the Idiopathic Hypersomnia Facebook group. My name is Dean, and you will see me there. :)

I'm 42 and have been aware of my 'laziness' (undiagnosed IH) since middle school, which of course only got worse with time. I am prescribed Adderall 30xr ibid and 20mg ibid prn. So that's 100mg/day.

The first day I took the meds, I had a doctor's appointment. There's always some down time during that process, during which I normally sleep. For the first time EVER I was unable to sleep! I marveled at that for a moment. Then I realized that lying there waiting for the doctor was incredibly boring. Lol I remember wondering how the heck people tolerate that kind of boredom? I've never been bored because I would always 'check out'!

I believe Tom was the one who fell asleep posting a comment? Oh, how I lol'd!!! I've done that soooo many times! I have to make sure my six (yes, SIX) alarms are set before I get in the bed. I have overslept more times than I care to count, only to awake and find my hand still poised to set the alarm. Yes, I fall asleep while setting the alarm. Work (nor the kids' school) takes too kindly to that as an 'excuse'.

Part of my divorce from my first husband (according to him) was my 'laziness'. I tried for 10+ years to get him to understand that it wasn't that I didn't want to get things accomplished, I was just soooo SLEEPY!!! Yeah, well, so was he, blah blah blah. I know you've all had that same convo ad nauseum.

One thing I tell people when they really are interested in understanding is how it is waking in the morning. For me, there are times when it is truly physically painful to force my brain awake. Explaining how it feels to *always* be sooo sleepy is akin to explaining to a man the sensation of nursing a baby. It is singularly unique.

As for the meds, I am awake, but now I can just as easily go to sleep as well. The only difference there is (usually) I CAN remain awake OR go to sleep. Without the meds there was no 'or'. However, I have found my mental faculties deteriorating. I am no longer able to function at the level I once did. And my memory is complete mush. So I have a choice...flaky and awake or functional (if only mentally) and asleep? I find both equally sucky.

I, too, would welcome SSI advice!

If you have IH and are on facebook, do a search for Idiopathic Hypersomnia and join the Idiopathic Hypersomnia support group. My life took a huge turn for the better when I did. If you do, please mention that you came from EP so I know if I am reaching anyone because helping others with IH has pretty much become my full time job!

People want to help but they don't understand. When you think of it, it is difficult to believe the doctors don't know what's causing it. Doctors know everything (lay people think)! And when you sleep 14-22 hours a day (as I do), well, it must be depression. Well, yes, I'm depressed, but it is the effect not the cause.
Some Japanese scientists have discovered a link between low hystamine and narcolepsy and hypersomnia. Merck actually has been doing clinical trials on a pill to raise hystamine levels (there isn't anything now).
So maybe help is coming! Hang in there!

I can only imagine your frustration for all that time ... I have only knowingly been disgnosed for 3 years now. <br />
<br />
But that is exactly the type of person I am too ... I need to know the answer/cause/sorce .. That's just who I am to make me deal with situations better ....<br />
<br />
I didn't have any allergy testing done , but I have a pretty good "assumption" of what caused this in myself. <br />
<br />
A bit of personal info .... In recent years , my wife and I have had power of attorney over my mother , cause (not that our family is big) but , the family had recently found out that my mother had been a very Heavey cocaine user from the years of 05-09 (as she had just come into a little money). <br />
As far back as I can remember , my mother has been a manic depressant & had some mental issues ... Been hospitalized a couple of times. <br />
As the drug thing came up , we could monitor the money , and know where it goes ( not thy she had any left ) ...(after running her numbers for everything , my best estimation is from 2006-2009 , she is missin $450,000 & her entire left nostril (yeah , seriously). <br />
Well over the years of taking care of her finances (which my wife is really the one that does it , I pretty much do nothing). My mother thought she had developed a friendship with my wife , and would talk about a lot .. Way more than she ever wanted to know ... Well , come to find out that that 3 year binge has been going on for almost 40 years. But she was found out when she actually had a lot of money for the first time ever in her life and Obviosly went to far. Even in one disturbing phone conversation with her , she had admitted to doing cocaine , smoking pot , & drinking while pregnant with me ... So , on our own , for months we check it out ... And it doesn't really come together ... The effects of any of them would never lead to this (made sense , that I was premature, weight just barley 6lbs) but not IH. That's all I'm concerned with ... On a personal issue , I know know that she's been a selfish scumbag all her life , and I have absolutely no respect for her , but the focus was IH .<br />
Well .... There was a breakthrough when my mother called my wife one night , completely hammered ... And was telling her that she wishes she could find some "Crank"... Procedes to tell her that it was the best ever , hey absolute favorite thing in the world ....and that she was a heavy- HEAVY user through the years of 1975-1983 ... Like to the point where she thought she was gonna die a few times. <br />
Bingo !!.... I was born in 1979....<br />
And Apearently from the first use of "Meth" ... It instantly destroys a certain brain cell .. Can't remember tha name ... I think it starts with a "Z" ... Ironicly .... It's technically what's deteriorating in the brain of someone who had IH .... <br />
My doctor won't officially confirm it. <br />
He said the only way to know for sure , would have been blood samples when I was born. ...<br />
So his words were ...."I have to tell you 'NO'. Because I don't know . ... It is absolutely possibly for IH to just appear . But what are the odds that , that particular drug has those particular effects , and you have IH , that's very weird" .... He said think about it this way ....<br />
Go to a warzone ... There is a man lying shot to death with his rifle in his hand ... There are gun shots all over the place ....<br />
There are 2 options ....<br />
1. The man lad killed in active duty<br />
2. The man just lost a game of Russian Roulette ...<br />
<br />
Draw your own conclusion ...<br />
<br />
So , again ... Nothing is 100% certain .... <br />
But I believe that I was a meth baby that drew this out in me ...(which by the way , my mother says it was a lie, my wife is lying , she never did that )....<br />
<br />
But there is a chance that it is something completely different .... But ... Personally .... <br />
<br />
I don't play Russian roulette .

Tom, check out my recent comments!

I might not be understanding the "exact angle" you mean by desperation ....<br />
<br />
I guess the best way to describe my mental view with all of this right now is ... <br />
I feel .... Alone. <br />
Although I know for a fact that I do have support from my Wife. My Kids . And to an extent .. My Boss. <br />
I'm sure everyone else has the same issues of not waking up in the morning very easily ... And when you do , you are so foggy , you don't even remember it ... <br />
Along with doing very odd things because I'm not quite "there yet " in the morning ( like bringing strange household items in the car with me , forgetting to bring EVERYTHING , heading in the wrong direction from where my work is), last year alone I was late to work over 100 times ... I have a union job driving for a company ... The rule is , late = a write up , & 3 write ups is termination ... But I feel I constantly need to make up for that by doing SO many extra things at work tha most people wouldn't .. So , I have his support .....until enough is enough...<br />
<br />
But I think a better way to describe , or compare the "Alone" feeling is...<br />
<br />
That misunderstood 13 year old boy who dies his hair black and doesn't talk very much ... Has no friends , but even the "cool kids" in school wouldn't mess with him , in fear of him breaking into their house that night & brutally murdering them and their families ... Because he probably would .... You know , like a "true" Goth person. (Not like the posers who say that stuff just for an image.... And well before "Marylin Manson" made it "Cool". & there weren't stores in the mall dedicated to it). <br />
<br />
Like noone could fully understand , & you've even ate trying not to explain it any more , because your words could never do it justice. - Alone <br />
<br />
*I could be way off of the entire purpose of the last post, & If so , I appologize in advance. That was not only the first time that I've replied to a public post about IH (cause I usually try to hide it , or pretend that its not there)... But it is actually the first time I have ever answered/replied/commented on any public post in general. Again , if I have overstepped my boundaries or anything , my apologies. *<br />
<br />
~Tom<br />
Super Terrific Action Team

One more question...... Have any of you been tested for food allergies? That is the angle I am working on now. For me it is find a solution or die because I can't live another 40 years like this.

I have not been tested, but I have discovered that refined sugars and starch (potatoes, pasta) don't just give me a crash - I get a train wreck. Baked potato for lunch? Coma. A brownie for a snack? Coma. Spaghetti? Coma. Hate that.

Or maybe gluten is a problem for you.

If anyone is interested, I am the only Dean Jordheim on Facebook.

Questions for everyone :<br />
<br />
What part does the feeling of DESPERATION play in your life? Less than daily? Hourly? <br />
<br />
Have you ever felt like you almost live the life of a drug addict? I don't mean just because you need meds, but just the desperation and struggle to survive. I think I had more aspects to add to it, but obviously my memory is less than perfect size I can't remember right now.

And unfortunately just fell asleep right now with my finger landing on random letters & the "post" button...<br />
But any way ... Crane truck operator , another enemy of IH ...<br />
In 2007 my wife (who is the same GF who had our baby in 2000 , finally broke me down to seek help and couldn't take my grouchyness , and was putting a strain on our otherwise happy marriage, sometimes thinking I would "claim" to be so tired to avoid her & and husband/father duties. Working the crazy hours as the wrecker driver ... Being tired once again made sense , but at that point I took my wife's advise , because there wasn't any excuses anymore with the new job. Working 10 hours a day ... 7-5 ... Sleeping by 8 ..... Wtf ?... <br />
So as you know ... Dr after dr after Dr. Some period of time was wasted finding the problem , when they found out I was diabetic and that was the problem ...<br />
After eating almost perfect , in 3 months I went from 235 lbs to 175 lbs (hell I was 185 in high school and was actually in shape... Kinda..) ... But , of course .. Still tired ..<br />
So the sleep studies start ... The c-paps , the overnights , the all day monitoring .. The whole "shibang" .. The first thought ... (like everyone with IH ), ..Narcolepsy .<br />
But then the test (I forget the actual name) where you go and sleep all night , the wake up for 1 hour & 40 mins, then a 20 min nap & repeat 6 times ...<br />
What does the survey SAY????<br />
IH<br />
<br />
Not knowing if he is exaggerating , but he told me if there was a world record for that test , I would own it ... Not only sleeping all 6 times but the longest it took me to fall asleep was 1min 13sec ... The quickest was ....... .... 9 seconds ....<br />
So he tells me to look for a new job ...<br />
Yeah .... Been Driving trucks & Operating Heavy machinery since I was 16 ... I know nothing else .. So he wanted me to go on permanent disability ...<br />
Now at the age of 30 , my wife and I decided to have our 2nd (and last child) since we were a little more ready for it at this stage in life. So , I also had just bought a nice big house to go along with it (and yes , if you've heard how ridiculous taxes are in Jersey ... That's not a lie) ... 2400 sq ft on 1.5 acre , in a decently upscale neighborhood .... $8300 ... Just taxes ... But anyway , my point is I can't survive on the $525 a week from disability ... So after arguing with the dr to not report me , the stimulants started 1 a day . Then 2 .... 3.. And so on ...<br />
Currently am at 2 - 20mg time released Adderalls & 3 - 250 mg Nuvigils a day .. It's working so far , but not as well as months back ...<br />
Our family is running a little short on cash lately so my wife is filling out job applications (we've been fortunate that I could cove the bills , so she could be a true "stay at home mom" and raise our kids right) so she hasn't really worked that much in the past 13 years we've been together. But , once I was diagnosed .... She's been pushing me to retire (she is afraid especially cause I drive a big truck) , so I think she wants to permanently keep it , and I'll be the stay at home dad ... But we all know how it is .... I'd rather not retire , unless I absolutely had to ... IH has taken a lot from my life ... I would like to hang on to my manhood as much as possible be it takes that too ... But I know my wife was only being persistent out of love ....<br />
<br />
So , I am sorry for the (2) long posts ... But I honesty was getting chills reading yours ... I had actually saved the bookmark in my phone and titled it "My Twin" ... I have read a lot of people's views and thought on IH ... But yours made me feel like I was reading it out of my own head ... And never really realized it but ..... Wow ..... "yeah, I'm tired ,too"<br />
I've probably heard it thousands of times ...<br />
I know how bad it is feeling like this ...<br />
I wish you all the luck & maybe someone will invent the miracle cure ... And in the meantime , I really hope all works out with your wife, son & the little ones ...<br />
This problem is hard on a relationship , at all different ends , and can easily destroy what once was ... It's almost happened to myself ... So , wishing the best ....<br />
Good Luck , my friend ..<br />
<br />
~Tom (from Jersey)<br />
Super Terrific Action Team

Tom, I want to give you an appropriate reply, but that will take a while and it will probably be a couple days before I can get to it.

Hi Tom, I was reading your post and you said you live in Jersey. I was born and raised in Jersey. I lived in Mt. Laurel for a number of years, but I made the stupid mistake of moving to Lancaster County Pa about 7 years ago. Where do you live? But I know how high everything is in Jersey, that is one of the reasons we moved. Are you collecting disability? I have been told for years that I couldn't collect because there is nothing to go by. Now I'm thinking is there no one else out there like me? So I went online to look for support groups and found you guys. I went to my doc yesterday to ask for help and meds that work and I told him I cannot work anymore that is is killing me and he said to apply but it could take up to a year before I get an answer. He also told me that there was nothing to go by but he did not remember saying that. I cannot imagine trying to work another 8 or 10 years more like this. I have been on every shift and none of them work. I would love to hear from you.

Linda from Pa

Hi Linda , I live in Sewell (Mantua twp). I actually work out of Maple Shade , right next to Mount Laurel ... My doc was completely willing to put me on disability , but I'm trying to hold out as long as I can ..
Most regular doctors won't support the disability idea , but if you go to a sleep specialist , they'll run a bunch of tests ... You sleep there 3 or 4 times ... Then according to the results , that's when they determine if your "disabled".

WOW ... I don't know wether to give you a "social networking high-five" , or break down and cry ....<br />
<br />
My name is Tom . From Jersey , 33 years old ... I was diagnosed with IH about 3 years ago .. <br />
I was that same guy in high school , sleeping every period ... But then , I just connected it with being a punk teenager who was bored of school .. When I was 18 , I was renting the typical "Party House" ... 5 people in a 3 bedroom house , with someone living on the couch... A constant party ... But yet , every day , even on weekends , I was the first to go to bed . Even on a sat night Kegger that I paid for !!!!! (but always associating it with my partying life style). Soon after my (at the time) "Girlfriend" wound up pregnant , which was the best thing for me in many ways , one of which was to calm down with the partying , and start being a little responsible .. Ironically I start my career as a Heavey Duty Tow Truck Driver ( a driver being IH's worst enemy) . As usual , always tired but then again always associated that feeling with the fact that I was "On Call" all the time and would work all hours of night , and called in constantly... In 2005 I left that company that I had been with for just shy of 10 years (16yo) and went to a nation wide rental company as a "Crane Truck Operator" .... Hmmm (once again , "cram opeAr

Hello my name is Linda and I am so tired of trying to go to work everyday. After reading your story I wanted to ask you what state you live in, and how hard are the forms to fill out. Is the monthky amount enough to live on? Please let me know. <br />
<br />

Linda, I live in North Dakota. The amount you get from SSDI is based on how much you have paid in to SS. I get about $1300/month and my kids get a total of $600. Now that I have been on it for over 2 years I get medicare, but getting anything more than just hospitalization coverage costs money so I am closer to $1100 now. Needless to say, even with the low cost of living here, I can't come close to making it on that. More on that later because I am on my phone.

The paperwork is a bit grueling, and the key to getting approved is having every detail completed perfectly. This is what I did right and mine was approved in 6 months and 2 days when everyone told me IH would be a hard one to prove and to expect to need a lawyer and for it to take a year. If you are going to do this, I can help you with the forms.

Thank you so much I really need to do this and I know the forms have to be worded just right. I have such a hard time forcing myself to get ready for work. Every doctor has told me that I can't collect SSDI because they have nothing to go by. Well I say how about other people who have the same dam curse. I live in Pa. SS shows a list of reasons to be able to collect and sleep disorders was one of them. Did you have to documention of a sleep study? My email address is and I would be greatful for any help.

Thanks Linda

I am going to look you up on face book. I am going to apply for disability and need your help. I also noticed that you are looking into food allergies. I am looking into higher altitudes. Last year we went to New Mexico which is a higher altitude and the whole week I was there I was not tired at all as a matter of fact I had trouble falling asleep at night???? Very strange. Not the case here.


I have always been a sleeper, never really thought much of it till the last few years. My mom always chalked it up to being a teenager... but im 25 now and its only gotten progressively worse. I havent worked in four years due to sleeping issues, anxiety, and suspected fibromyalgia. I was recently diagnosed after a sleep study with idiopathic hypersomnia. Until a few years ago i was still able to work, but always took a nap at lunch and fought nodding off constantly. My anxiety/depression i feel is all ultimately linked to my over sleeping. Im always tired. Always fatigued. Theres no such thing as too much sleep in my world. My relationships suffer cuz im impossible to make plans with cuz i dont know if ill b able to get up n get ready. Life feels like such a task. Im not suicidal. I want to be awake, have motivation, goals. Im so stuck. Im so tired.<br />
<br />
I started Nuvigil a few weeks ago, 250mg. After about an hr im already nodding off. Its not effective as of yet. Doctor just prescribed Zyrem. Aka GHB, the date rape drugs. lol.<br />
<br />
He scared the crap outta me when he started tellin me about it, but after a little googling it seems to b a great idea. Its actaully something that is prodiced naturally in the spinal cord and brain, and as long as its not mixed with alcohol, everything shuld b fine.<br />
<br />
Hes starting me out low and told me to stop the moment i find my perfect dose. It is supposed to make me sleep in an almost comatose state, deep REM. I have to take it before bed and four hours into my sleep since it wears off quickly. I havent recieved it yet. Its special ordered frm the only pharmacy that makes it and they have to fedex it to me. <br />
<br />
At this point ill try anything reasonable and im quite fortunate to have such amazing insurance. But it does run out when im 26 (one more year)... my doctor suggested disability which doesnt seem to b any other choice.<br />
<br />
Fingers crossed the Zyrem works tho!

How are you? I completely understand where you're coming from. I'm in a similar spot myself. My doctor says my diagnoses is " narcolepsy -vs- idiopathic hypersomnia." He hasn't committed to one or the other! My husband doesn't understand. His theory is that he gets tired, too, but it comes down too responsibility. He doesn't have a clue.

Your right he is an idiot like most of the doctors I have seen. They say this is what you have and this is the meds you have to be on for the rest of your life so just deal with it.


I also have been diagnosed with hypersomnia, my sleepiness goes as far back as preschool where I asked my teacher why she never woke me up after my nap to play outside with the other kids. She told me she tried and I always told her I wanted to keep sleeping. Come to find out one day I actually remembered her asking and saying no. I was constantly asleep through highschool and spent my free time sleeping. Fortunatly when my sons were born some Mommy gene kicked in and I was able to wake up to their crying for nightly feeding and the hypersomnia went into a bearable state of remission. But as soon as the toddler years were over the hypersomnia came back with a vengeance. To the point that I was unknowingly chanting "I'm so tierd" all day long. My husband had to wake me up for work by screaming and yelling, clapping and banging pots and pans like it was New Years Eve, because I could sleep through blaring alarm clocks and phone calls. I constantly was telling him that I didnt have to go to work that day or that I was scheduled late ....all lies and the worst part was I didn't even recall telling them. I have had countless conversations sleeping that I don't recall. I was finally diagnosed with hypersomnia and was happy to learn I had a condition and that I wasn't just some type of weak individual who couldn't handle life the same way other people seem to do. <br />
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I have also been diagnosed with fibromyalgia so pain and utter exhaustion are the ruling factors in my life now. I had to stop the ritilan because it intensifies the pain. In some ways I am relieved to have the hypersomnia with the fibromyalgia as sleeping seems to be the only true pain releif. In the meantime, my life feels out of control in the fact that I dont seem to have any. I am so thankful for my husband that he has been willing to take on my responsibilities in caring for our children alone with the added responsibility of now caring for me as well.

I have been on Dexamphetamine (Dextroamphetamine) for 7 years now and the dosage that I have been taking for the last 4-5 of those years is 5mg x2 - every 3 hours (max of 8 tablets a day). It pretty much gets me through a working day. <br />
Having said that, I too find that it's important to have atleast 1 day where I don't take meds at all. These days usually consist of movie marathons, or reading in bed where I can nap frequently throughout the day comfortably. <br />
Routines will also be something of great value to your daughter. For some people napping during the day doesn't work at all, but for me, I find it helps - sort of ;)<br />
When I say 'naps' however, I mean a nap of no more than an hour max. 30 mins is probably the optimum time to nap - so that the body doesn't think that it's going into 'night time sleep mode'. <br />
<br />
I'm 24, and was diagnosed with Idiopathic Hypersomnia when I was 17 and trying to pass my final year of high school. I am still studying at university (part time). If your daughter wants to email me for a chat, or to vent, or for some company, please, I'm happy to connect with her.<br />

Holy crap. I'm almost in tears. I am also sick of hearing people withOUT some type of sleeping disorder say "yea i'm so tired too" because they really DONT understand. And I've only been diagnosed for 2 years but I have been struggling with college. I did not know that we could fall under Social Security Disability. I feel like crying just for findingpeople to interact with that understand what I'm going through.

I had to laugh... I am sick of hearing people complain how tired when they do NOT have a sleep disorder. They can take a nap and feel great.... What I wouldn't do to get my old life back. You are also covered under ADA...I applied for SSD but you can't be working. I have been waiting for 4 months for my denial letter. Florida is one of the worst state for SSD. I hope your in a state where it is better...

Sleepy- I tried nuvigi for 4 days. I'm back up 30mg doses of adderall with the presc<x>ription for 3 times a day. I am working 6 to 10am 4 days a week during the week, and the wife took my daughters and left in July, so I take one every morning, do all three doses when I have the kids every weekend, and I try to have two days a week where I only have that morning dose and this way I keep my tollerance down. Its working so far anyway. Last week I was busy every day so I took at least two a day for over a week and just in that short period of time it lost a lot of its effectiveness.<br />
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You can earn up to $720 a month forever while on disability. You have 12 months in your lifetime in which you can earn any amount. Try for disability. You can go off of it any time. Let me know if you want more tips on that!

FYI, try Nuvigil samples for a couple of weeks first because I tried nuvigil when I was diagnosed and about 5 days into filled presc<x>ription the nuvigil quit working. Even with insurance and manufacture discount I paid over $300 for one month supply and only used five of them. When Adderall was Rx'd to replace the nuvigil I thought this was the narcoleptic/IH dream come true, it worked better than nuvigil and generic cost $10/month. Now after being on Adderall for ten months I find it isn't working much more anymore. I load up on Starbucks in add. to the Adderall just to make it through getting home where I immediately run to the bathroom to pee from all the caffeine and fall asleep on the toilet. Hiting my head on shower enclosure is what wakes me. OMG, how embarressing! HYPERSOMNIA SUCKS! I hope to get back on health insurance after i graduate school and maybe find another" dream come true med". By the way, getting on disabilty doesn't prevent you from getting a job? I haven't tried because I thought it did and I need to be considered qualified as capable of performing job. Whats the general opinion? Should I file for disability, would it pose any problems when I look for work? Appreciate anyone's feedback on this. Happy sleeping to all!

Wa-wa-wa-waaaiiiiiit a minute. Silent baby you don't sleep well? If you are tired all the time because you don't sleep well you don't have IH, you have undiagnosed sleeping problem. Or do you not sleep well at night because you sleep all day?

mm - I just tried nuvigal for the first time a couple of weeks ago and, like provigal, it did nothing. It sounds like it works for most people though. If it doesn't work for you try (if you haven't yet) the other stimulants like dexadrine, concerta, or adderal.<br />
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It doesn't sound like you've had very good doctors. Please email me at You are not alone, and i've been through or studied pretty much every aspect of this disease. My IQ also came out in the 120's when I was nodding off during the tests. A wee bit frustrating when i'm pretty much incompetent.<br />
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Seriously though - send me an email. <br />
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My wife has also now taken our 4 girls and left because she doesn't understand the disease and decided I was a bad influence because I didn't accomplish much and a hazard to them because of my forgetfulness.

Sorry to hear your wife left. No one understands IH unless they have it. I just found this site. It is nice to know I am not alone. I, like you, have been on everything. Dexadrine lasted the longest. I do not take any meds on Sunday. That seemed to help the meds to last. Thank you both for sharing. I agree with Out of steam, mmwalden has not been to a good doctor. He needs one...

I just came across this story. I'm a 23 year old beginning to learn to cope with this disease, and very unsure about what things will be like ahead of me. It breaks my heart to hear all the stories, especially yours, because it caused a rift in your family life. I must admit how disheartening it is to see that the only conversation online about this is just...really, it's just commiseration with each other, relating to the horrors of feeling so helpless. The IH community online seems to be all despair and very little good news. I'm praying every day that our suffering will be seen someday for what it really is, and that if not answers, maybe we can at least receive compassion. Know that you have mine.

Do you mean i am not helping you? dear, i wish i could! i tried to work in spite of IH..even did night-shift but told my chef all the time it was too hard and too i wait until i get fired, i am officialy disabled now and even have a special card for special traffic; i sit in a bus with people with down syndrom or other handicaps. Quite confrontating but also..finally some understanding that this terrible IH is a mean and heavy disease. I like what you wrote about..."they're lucky i'm not awake.Yet". I also wonder what my life would be without IH. I was a popular girl, made many jokes, had brains (still have them but foggy) and many dreams. Now i am at home, feeling out of society. The worse is the are so right! even people with the best intentions and with love, they get tired of me being more than tired.<br />
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My hope is not in meds but in God. I wonder a lot and struggle with my belief, sometimes i feel like getting punished. But i want to trust! in healing, in support and understanding. When all else fades away, this bible verse helps me through: "I will not abandon you nor forsake you". <br />
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I'm 38 years and just became a mommy. Being so tired and slow sometimes makes me feel guilty or worried about raising my child. But my daughter is such a joy, such a lovely pure being. Even i wake up for feeding 3 times a night, i am happy with her. (waking up 3 times is a piece of cake for someone with IH, i don't know better than sleeping bad and now at least it makes sense ;-)<br />
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Wish you strength and wisdom and hope nuvigil will work 4u!!!!!!

Dude. You are not helping. I was suicidal from tiredness in Oct. My 4 year-old daugther is the only reason I didn't take my life.<br />
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I've been a hypersomniac since 10. But the tiredness and periodic hypersomnia, which has stopped, started in '94. The tiredness remains. It's been 16 years of doctors telling me there's nothing wrong with me.<br />
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I didn't know how much I slept was a major medical issue, so I never brought up anything except the periodic hypersomnia in '94. They would just look at me and shrug.<br />
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I want to see what if feels like to have a clear head. I will start meds for the first time within 2 weeks. Maybe, Tuesday.<br />
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You're bumming out my hopes. With hypersomnia my iq is 129. But, I know if I was awake I'd be a genius.<br />
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At 42, I just want to wake up out of this nightmare and make the most of what I have left.<br />
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I've been treating myself with 10+ cups of coffee and 2 1/2 packs of cigarettes and nicorette gum for as long as I can remember. It takes me 45 minutes to "wake up" pumping caffeine into myself. But, that's not the real awake most people have.<br />
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The question now is will nuvigil be my savior? I'd really like to quit the coffee and cigarettes.<br />
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I'd give my left leg to be awake. For real, I'd rather a prostetic than this.<br />
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My disability doesn't pay my bills and I'm on the verge of bankruptcy. Right now I'm trying to figure out how I can afford my medication copay.<br />
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Please, God, let nuvigil be the answer. I'm drowning. I have basically no real relationships or successes since college. I used to be a pretty girl, talented and with a gifted mind. But, now I'm fat, have numerous back injuries and my life is going to waste. I have so much trapped inside. If only, I could get out from behind the veil of sleep and connect with the rest of the world.<br />
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I only wonder why me? And why not me? With all that I have going for me why am I such a failure? I never had a label.<br />
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Am I not smart enough? Am I not nice enough? Am I not taleted? Am I not pretty?<br />
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So, what's wrong with me?<br />
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Oh. The doctor said idiopathic hypersomnia. I starred blankly, knowing he was right.<br />
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And for those who walk all over me. Haa! They are just lucky I'm not awake. Yet.

Hi, i am sorry to read your story! it is so hard with IH. I am diagnosed since 2004, got a good period and worked for 4 years but now i am home and invalid because of the sleep problem. People can not understand it, even if they wish. Taht's toooo bad right? i life in Europe and can not find anyone with this desease....greetings!