Jump to content


Photo

Narcolepsy Needs A Name Change

Orexin Hypothalamus

  • Please log in to reply
15 replies to this topic

#1 lizzQ

lizzQ

    Member

  • Members
  • 16 posts

Posted 27 June 2013 - 02:15 PM

Research into the many functions of orexin/hypocretin continues to show that the loss of orexin leads to way more than just sleep disturbances. It's not a coincidence that PWN often suffer from a number of comorbidities related to mood, vigilance, digestion/metabolism, motivation/reward, immune disorders, chronic infections, internal regulations, etc. What we have is way more than just a sleep disorder and yet it still gets lumped in under mental health which does not get the same kind of coverage by insurance companies (I'm not saying this to minimize mental health, but N is not a psych disorder and mental health coverage is poor, but that's a completely separate discussion).
This disorder is, in my understanding, a kind of hypothalamic disorder, but it got the name "narcolepsy" and classification as a sleep disorder before anyone knew its cause, and now that scientists are realizing how important orexin really is in a number of bodily processes, why isn't narcolepsy being updated to reflect the scope of what we struggle with beyond debilitating sleep issues and cataplexy?
I'm tired of people thinking it's cool or funny that I have narcolepsy without even knowing what it is beyond comedic stereotypes seen in tv and movies.

Thoughts?

Source:
Role of orexin in arousal, feeding, and motivation.
http://www.ncbi.nlm....les/PMC3629303/

And as always, Wikipedia:
https://en.wikipedia.org/wiki/Orexin

#2 sk8aplexy

sk8aplexy

    Member

  • Members
  • 338 posts
  • Gender:Male
  • Location:IN
  • Interests:Balance & Proportion of Tacos. Care & Respecting. Pools & Concrete Skateboarding. Observing & Contemplating. Future & Traveling. Technology & Evolving. Philosophy & Words...

Posted 27 June 2013 - 02:45 PM

'Could Not Agree More' -> with the above.

 

I tend to attempt explaining to my friends or people that I meet, who show curiousness and/or interest, firstly that it is an Auto-Immune Disease, and then describe what is going on within the brain and the broad effects.  That it, in fact can be very debilitating.  That it is/can be, or could be said to be, within the same family of diseases as Parkinsons, MS and ALS. 

For instance, I describe that I basically 'get no restorative sleep,' meaning that if I manage to sleep 8 hours I awaken feeling as though I slept 2 or 3; which is about as rested as I ever manage to feel.  Or, describing how the skipping over of certain crucial stages of sleep results in 'non-restorative' sleep.  That Cataplexy (being minimal to complete temporary muscle paralysis) is described as 'an intrusion of REM in the wake state triggered by interactions which involve pleasurable emotions.'

 

To me, in terms of how one is treated within the medical realm when having Narcolepsy with Cataplexy (I say them both, since I have them both and this statement is just pertaining to my experiences) it (the diagnosis or label) feels like a 'pigeon-hole' were one can be thrown, or a 'black-hole' were one can be dropped into, kind of like a "well now that that's labeled" 'cop-out' maneuver... 

 

There is no such thing as 'normal' in my mind.

 

Honestly, I don't have answers nor even much to say in regards to how things could be better'd.?  I believe systemic problems as well as cultural/societal mannerisms/behaviors are behind -an aspect of- the current difficult struggle, of both being understood (rather it is so often, being entirely misunderstood) and also ever receiving any grain/s of respect.

Although I can't help but say that if the medical realm consisted of 'thorough doctors who actually analyze a patient -broadly- rather than only breaking them down into specific pieces and sending them off to the so-called specialist/s (oh, and detach the $ industrial systemics / profiteering ailments)' perhaps, things would function a bit better?

 

Maybe I'm venting, a little, here.?



#3 lizzQ

lizzQ

    Member

  • Members
  • 16 posts

Posted 27 June 2013 - 03:19 PM

This is what these forums are here for, to vent with people who understand.
I'm tired of being seen as a hypochondriac! And I'm fortunate for my intelligence (it's a blessing in spite of everything else I deal with) that I can do research on my own and make connections with a mind that isn't crammed with categories and boundaries saying that different parts of the same body are unrelated...that is BS! Our bodies are built to work together in beautiful harmony, yet remove a few cells from the control center and it sets the whole system off balance. The disease manifests differently based on how each person's own body responds. Diagnoses are just names.

I am going on a total med holiday because I was on antidepressants for years and I don't know what my baseline is. I was still diagnosed with N with C despite not stopping my 200mg of Zoloft and 300mg of Wellbutrin XL when I had my MSLT. My sleep latency was less than a half minute and my REM latency on 2 out of 4 naps was 3 minutes. I'm curious and yet also scared by what I'll be when I'm finally off everything (still taking Xyrem and supplements while I taper off Zoloft). I'm pretty sure I've had this since I was a kid.

#4 nerkie

nerkie

    Member

  • Members
  • 36 posts
  • Gender:Female
  • Location:Gloucester, VA
  • Interests:Working, playing Xbox, napping in the sun

Posted 28 June 2013 - 12:53 PM

Could not agree more with all of these statements!

Recently, when National Sleep Awareness week came about, I sent out the informative email to my coworkers (they all know I have N. It's a small office and everything spreads like wildfire). The responses I got were truly shocking.

I had people come into my office and tell me 'Does this mean I get to complain about being tired all the time too?' or 'So we all get to take naps this week right?' I was appalled. I snapped at one of them (whom I practically don't like anyway) and said 'You wouldn't treat a breast cancer survivor this way during Breast Cancer Awareness month would you?' (I realize that breast cancer is severe and I did not mean it lightly so no offense to those courageous survivors out there!) and the reply I got back HIT ME LICK A BRICK TO THE FACE! She said, verbatim 'Breast cancer is a real disease, not a disorder made up so you could have excuses.'

IT FLOORED ME. I realized then that people didn't take it seriously, because it's a sleep disorder. If it was labeled an auto-immune disease or something like that, it feels like such stereotypes would not exist as much as they do.

I wonder if maybe there is a petition we can start?



#5 lizzQ

lizzQ

    Member

  • Members
  • 16 posts

Posted 28 June 2013 - 01:19 PM

That is awful. I'm fed up with uninformed assholes thinking this is a silly behavioral disorder when in fact it is a serious neurological disease. If people (and by people I mean medical professionals who think everything is set into nice little categories) would stop thinking of this as only a sleep disorder, or even if society in general would at least stop undervaluing the importance of sleep on health, then maybe we can gain recognition. I hate feeling like I'm competing with other diseases!
Maybe a petition could get started through narcolepsy network and this issue could be brought up at this year's convention? Idk if like it would be a petition to the AMA or some governing body of medical diagnoses..? I mean if I can work up the energy to gather research more formally and come up with my own argument at least, I would certainly love to contribute. I know if we N folks work together and combine our experiences we can have our voice be heard!
We're not lab rats, we're human beings who live this thing on a daily basis. So maybe these "experts" should stop getting so many hypotheses about N by looking at rats pressing levers and start LISTENING to us!

#6 Ferret

Ferret

    Member

  • Members
  • 875 posts
  • Gender:Female

Posted 28 June 2013 - 01:53 PM

Nerkie, so sorry you had to experience that. My response would have been "thank heaven that your ignorance isn't contagious". And you wonder why some of us like to stay away from public encounters. I've learned to close my eyes and tilt my head forward when I'm having a cataplectic seizure...that way I don't have to see the reaction on people's faces.

I have to agree that it's time to be re-labelled. So much has come to light about Narcolepsy in the last 15 years or so that IT"S TIME for the Medical Community and Insurance Companies to sit up and take notice. I wouldn't inflict this "disease" on my worst enemy.



#7 nerkie

nerkie

    Member

  • Members
  • 36 posts
  • Gender:Female
  • Location:Gloucester, VA
  • Interests:Working, playing Xbox, napping in the sun

Posted 28 June 2013 - 01:58 PM

Maybe a petition to the Surgeon General?

I'm not sure either who would be the one to decide to re-label it. It may be that a petition needs to be made for more directed research, say like research on whether or not it's an auto-immune disease instead of focusing the research on it being a sleep disorder. I'm not sure how all that stuff works!



#8 lizzQ

lizzQ

    Member

  • Members
  • 16 posts

Posted 28 June 2013 - 02:39 PM

Well yeah I mean it would be more like a petition to request further research on N and C and the common comorbidities in a broader perspective.

Lol I can become a bit of an idealist...it's not a bad thing, necessarily, but sometimes I forget that I'm too tired to even take a shower some days let alone take on the entire healthcare system :-P

#9 Ferret

Ferret

    Member

  • Members
  • 875 posts
  • Gender:Female

Posted 28 June 2013 - 09:57 PM

Well, we'd be a really quiet bunch of protesters 'cuz half of us would be asleep...and the other half wouldn't want to get riled up because we'd be falling down all over the place.

Picture that scenario in your head...it is kinda amusing, :)

I would have NO idea to whom a petition could be presented or the important "when"...I do know that Avaaz.org can help organizing a petition to be presented. It would then go worldwide. I certainly would send it out to everyone on my mailing list and encourage them to sign it online.



#10 ApparentlyNarcoleptic

ApparentlyNarcoleptic

    Member

  • Members
  • 38 posts
  • Gender:Female
  • Location:Brooklyn, NY

Posted 30 June 2013 - 01:37 PM

I would sign that petition!!!  I was diagnosed with N w/C (very mild C though) almost 2 months ago.  So far the only people who I've told are my fiance, my parents, I think he told his parents, my best friend, and any dr's I've seen since.  Most of my family, his family, and the rest of my friends don't know and I'm not sure if I'm planning to tell them.  I KNOW my friends are going to roll their eyes at me.  Two of them already did before I even went for the sleep study because I said that the sleep dr mentioned that my symptoms sounded like N (which I also thought was a load of crap when he said it, until I actually understood what N is and then I totally agreed!).  It was that "Oh, there she goes again" kind of look and it makes me sick.  I have a lot of other health problems, but I'm not a hypochondriac.  It feels like people will look down on me for having N - my father hasn't been particularly supportive (even though, in his own way, he thinks he is) and just keeps demanding that I need to "reset my circadian rhythm" by staying awake more than 24hrs and then I'll supposedly be fine.  Maybe if we had a (so-called) legitimate classification then we wouldn't experience the many social problems that come with N.

 

Ferret - I DID picture that scenario in my head and laughed so hard I snorted!



#11 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,340 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 01 July 2013 - 09:35 AM

I agree it needs to be reclassified for sure. It should be primarily considered an autoimmune disorder which causes a syndrome of various sleep and other issues.



#12 drago

drago

    Member

  • Members
  • 227 posts

Posted 14 July 2013 - 01:59 PM

I think we should be wary of classifying narcolepsy as auto-immune. Evidence exists that suggests narcolepsy is CAUSED by an auto-immune response, not that it is an auto-immune response itself. You can't treat narcolepsy with immuno-suppresants, can you? Maybe you can prevent future damage, but not reverse the effects.

 

Narcolepsy is also neurological, endocrine-related disorder. I understand why 'auto-immune' is an appealing label, but I'm not sure it's the right one.

 

So, what about a neuroendocrine disorder?

 

Also, when people's ignorance is afoot (trust me, I get plenty of it, stuff like, "Why not go to bed earlier?" or "Are you sure this is about your disorder? And not some attempt to show control?" [YEP! Somene actually said this to me RE: issues getting to work in the morning, even after I requested accomodations.]) I have a go-to line:

 

"Would you say that to someone who has epilepsy? Blame them for their seizuers? Tell them they can cure their seizures if they went to bed earlier or ate less? Then DON'T SAY IT TO ME."

 

Actually,  I use this line RE: all neurological disorders. I've found that epilepsy is the only neurological disorder that is both (1) widely known and (2) taken seriously. So when someone says something about people who have tremors, people who have sleeping disorders, or even people who have addiction...  I tell them "If you wouldn't say that to a person with epilepsy about their seizures, then don't say it at all!"

 

Also, I think the bigger issue here is that sleep disorders aren't taken seriously at all. Even sleep apnea, wherein someone STOPS BREATHING!, isn't taken all that seriously. Neurological disorders are misunderstood, and anyone who is healthy is likely to find it impossible to truly imagine what it's like to have a neurological disorder. i.e. Until I actually experienced prosapagnosia (inability to recognize faces), I literally could not imagine the experience. I think that when this happens (people can't imagine what it's like), they assume their experience is "good enough" to understand the illness... meaning, they think it's an excuse, not an illness.

 

drago



#13 lizzQ

lizzQ

    Member

  • Members
  • 16 posts

Posted 14 July 2013 - 07:32 PM

I think we should be wary of classifying narcolepsy as auto-immune. Evidence exists that suggests narcolepsy is CAUSED by an auto-immune response, not that it is an auto-immune response itself. You can't treat narcolepsy with immuno-suppresants, can you? Maybe you can prevent future damage, but not reverse the effects.

Ya know I've never thought about it like that. It does have much more of a permanence to it. It certainly goes into the neurodegenerative category.

And I had trouble imagining what full-blown cataplexy was like until I was laid out on the floor at the gym freaking out the personal trainer...damn push-ups lol

I haven't experienced prosapagnosia but I have more frequently occurring instances of blanking on names of people I obviously know, even my best friend or siblings sometimes idk it's weird. Or just simple objects...calling them by their wrong name or forgetting what they're called. Aphasia maybe? Ugh it's getting to be more apparent to me the frequency of my slip-ups.

#14 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,340 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 15 July 2013 - 05:47 AM

I forgot my own birthdate one time when I was asked by a pharmacy tech. That was super embarrassing. It took like 5 seconds to remember it. As for classification, autoimmune is correct, I believe. It's just that in this case, the nerves are being attacked directly, instead of the myelin sheath like MS. There are other autoimmune diseases like ALS that have the same permanence as Narcolepsy. In fact ALS is usually fatal, and even though Steven Hawking hasn't died from it, he's definitely never gotten back up from his wheelchair.



#15 SleepyMann

SleepyMann

    Member

  • Members
  • 7 posts
  • Gender:Male
  • Interests:The great outdoors, avid podcast listener

Posted 17 July 2013 - 04:53 PM

This is a very interesting topic.  On a personal level, I have both Narcolepsy and MS.  I believe that scientists will ultimately find a common neural pathway that many autoimmune diseases share in common.  That would be the first step to a cure.  Also, it is not widely known, but MS does also damage the nerves directly and not just the myelin.  It varies by severity of illness and subtype (i.e. relapsing remitting vs progressive).  Nice to chat with the group.



#16 Kimpossible

Kimpossible

    Member

  • Members
  • 44 posts
  • Gender:Female
  • Location:Central Virginia
  • Interests:When I had energy, I liked to knit, read, write, and make stained glass panels. I have 4 dogs who try to keep me out of my bed.

Posted 17 November 2013 - 09:25 AM

Ya know I've never thought about it like that. It does have much more of a permanence to it. It certainly goes into the neurodegenerative category.

And I had trouble imagining what full-blown cataplexy was like until I was laid out on the floor at the gym freaking out the personal trainer...damn push-ups lol

I haven't experienced prosapagnosia but I have more frequently occurring instances of blanking on names of people I obviously know, even my best friend or siblings sometimes idk it's weird. Or just simple objects...calling them by their wrong name or forgetting what they're called. Aphasia maybe? Ugh it's getting to be more apparent to me the frequency of my slip-ups.

 

I am a vet tech and work in a small office of 3 other vet techs.  Every time I want to say one of their names, I have to run through the list in my head before it comes out.  I literally forget words and names I have known my whole life.  Recently back in school, my mind has blanked on tests and I can't remember words that I know which causes real problems for my grades.  It is so frustrating.







Also tagged with one or more of these keywords: Orexin, Hypothalamus