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Idiopathic Hypersomnia- It Really Isn't A Diagnosis...


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#1 LouLouro

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Posted 10 June 2013 - 04:27 PM

I can't say I am happy about this, but I can't say I am unhappy. I guess if I would have been told THIS is why you are tired it would have been an answer and yet I'm left with more questions. I have had sleep paralysis episodes a total of 4 times in the last two months and have been exhausted for two years. My sleep cycles were concluded as being normal but the day testing proved what I've been saying for the last two years now. I tested on average 4.5 minutes to fall asleep- I slept during each nap without trouble- even with a splitting headache during the last two naps (so bad I threw up when I arrived home).

 

I've been given Nuvigil as a prescription, I haven't taken it yet as I'm waiting on the insurance company and my pharmacy.

 

I am glad that someone told me I am in fact tired and the test proves it but I'm not sure what to do now. WHY am I so tired? I'm not tired because I have narcolepsy. I've been tested for so many things that I don't know what to do. For now, I need to pay off all of my medical bills and leave my questions unanswered. I have no idea what the sleep study is going to cost me...

 

My sister told me the other day I need to take vitamins (I usually don't because they make me throw up). I wanted to say- you are a genius!! THAT must be what will cure me!



#2 DeathRabbit

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Posted 10 June 2013 - 05:26 PM

I love people's little insights to cure me. That's one problem with the internet. Everyone who's spent more than 5 minutes on WebMD these days walks around thinking that they've got their own MD.



#3 lkl

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Posted 11 June 2013 - 05:20 AM

According to my friend's husband, maybe I just need a holiday... (I just had one less than 2 months ago!)



#4 Rainbow

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Posted 12 June 2013 - 10:59 AM

I can't say I am happy about this, but I can't say I am unhappy. I guess if I would have been told THIS is why you are tired it would have been an answer and yet I'm left with more questions. I have had sleep paralysis episodes a total of 4 times in the last two months and have been exhausted for two years. My sleep cycles were concluded as being normal but the day testing proved what I've been saying for the last two years now. I tested on average 4.5 minutes to fall asleep- I slept during each nap without trouble- even with a splitting headache during the last two naps (so bad I threw up when I arrived home).

 

I've been given Nuvigil as a prescription, I haven't taken it yet as I'm waiting on the insurance company and my pharmacy.

 

I am glad that someone told me I am in fact tired and the test proves it but I'm not sure what to do now. WHY am I so tired? I'm not tired because I have narcolepsy. I've been tested for so many things that I don't know what to do. For now, I need to pay off all of my medical bills and leave my questions unanswered. I have no idea what the sleep study is going to cost me...

 

My sister told me the other day I need to take vitamins (I usually don't because they make me throw up). I wanted to say- you are a genius!! THAT must be what will cure me!

I have a borderline case of IH or NC but either way, it is a diagnosis.  Remember that a doctor can not prescribe a drug unless there is a diagnosis.  why not check out Facebook page https://www.facebook...olenceDisorder/

to find people just as tired as you who don't meet the criteria for N diagnosis.



#5 Rainbow

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Posted 12 June 2013 - 11:00 AM

And you can check out http://www.livingwithhypersomnia.com/

 to get more support for getting proper care.



#6 Krickett

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Posted 18 June 2013 - 03:18 PM

I love the vitamins/ sleep schedule cure... as if everyone with a sleep disorder has not spent entirely TOO much time tryin to adhere to a strict sleep schedule to manage general life/jobs/school and still suffered the problem.. miracle cures from ignorant people.



#7 The Dreamer

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Posted 01 July 2013 - 07:32 PM

I had stumbled across a medical definition site once....and for hypersomnia it said "excessive daytime sleepiness".  And, I had already heard that idiopathic means "the doctor is an idiot and can't figure what is causing X" (Dr. Rye at NN 2010), where X in this case is EDS.

 

So, ya...IH is totally not a diagnosis....

 

Which is strange, because I had a doc that made that diagnosis...and various amphetamines and/or provigil......though he's also confirmed I have peripherial neuropathy, but being unable to determine cause won't treat it and told me that there's no reason to see him about it anymore unless I get a diagnosis from somebody.  Hopefully my new doc will figure something out about the the neuropathy....

 

The Dreamer.



#8 Lloydy

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Posted 09 July 2013 - 02:08 AM

So, ya...IH is totally not a diagnosis....
 

 

All a diagnosis suggests is a name/description given after reviewing the symptoms. With IH they have a series of tests to measure the severity of the EDS (MSLT, Epworth Sleepiness Scale, etc), specific symptoms to watch out for (such as sleep drunkenness, lack of response to stimulants, etc) and so on. At the moment IH is a diagnosis of exclusion where you need to have a set of certain symptoms but to also rule out other causes of EDS (Narc/OSA/vitamin defficiency/thyroid problems/viruses/infections/etc) but they now have more specific tests they can run on cerebral spinal fluid.

 

It just bugs me when people refute that it is a proper medical condition when there is so much literature from neurologists, sleep doctors and researchers.



#9 Lloydy

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Posted 09 July 2013 - 02:13 AM

For further details do make sure you check out the Wikipedia entry:

http://en.wikipedia....hic_hypersomnia

 

And also check out the Living With Hypersomnia website that's specifically to help/support people with Idiopathic Hypersomnia:

http://www.livingwithhypersomnia.com/



#10 collegewriter

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Posted 11 July 2013 - 01:56 PM

Idiopathic hypersomnia really is a diagnosis.  Here is a good definition of what a medical diagnosis in general is:

 

 

Medical diagnosis or the actual process of making a diagnosis is a cognitive process. A clinician uses several sources of data and puts the pieces of the puzzle together to make a diagnostic impression. The initial diagnostic impression can be a broad term describing a category of diseases instead of a specific disease or condition. After the initial diagnostic impression, the clinician obtains follow up tests and procedures to get more data to support or reject the original diagnosis and will attempt to narrow it down to a more specific level. Diagnostic procedures are the specific tools that the clinicians use to narrow the diagnostic possibilities.

 

 

Idiopathic hyperinsomnia is a diagnosis without a fully understood pathology, but it is a diagnosis.



#11 nursemanda

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Posted 11 July 2013 - 06:54 PM

I had that diagnosis (idiopathic hypersomnia) for years! Later it developed into full blown narcolepsy. I was on ritalin four a while then provigil for a while. Provigil gave me crazy headaches so I'm on ritalin now.

so you had the sleep study done and your results are inconclusive? Idiopathic = we don't know why / unknown pathology. hypersomnia = excessive sleepiness. It is a diagnosis in the same sense that fibrimyalgia is a diagnosis. basically they don't know what it is and everything else was ruled out. kind of a blanket term.