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Less-Known Effects And Correlations

smell personality olefactory

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#1 GuiGui

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Posted 05 January 2014 - 11:11 PM

Hi everyone,

 

I was diagnosed with narcolepsy about a year ago. I recently joined this forum and this is my first time posting anything. Anyway, I'm pretty interested in the less-known effects and correlations regarding narcolepsy. For example, I've read that narcoleptics typically have a heightened sense of smell (http://en.wikipedia....wiki/Narcolepsy, under signs and symptoms), but I've also read the opposite (http://brain.oxfordj.../130/2/442.full). I've also read that there are certain personality traits associated with narcoleptics, including anxiety-neuroticism (http://www.sciencedi...191886981900878) and being guarded, stubborn, and sarcastic (https://groups.googl...psy/NiUT75UF9Fo). Does anyone know of other such phenomena associated with narcolepsy? Or know more about these? Or have personal experiences relating to them?



#2 Hank

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Posted 05 January 2014 - 11:53 PM

Here's my take on the personality issue. This is genetic. Any personality patterns common among us is the result of the common struggles of living with chronic exhaustion. They are the result, not the cause.

 

Also, psychological testing is inherently biased in certain areas. For example- a test may look for depression by asking questions about sleep, since people who are depressed tend to sleep a lot. So, if we honestly answer the question "are you tired at the end of the day", we just scored a point for depression.

 

Also, there are certain situations that we know will not work well for us- like dimly lit lecture halls or movie theatres. Or for Cataplexy, belly-laughs or being the center of attention. So, avoiding some situations in order to manage our symptoms may be interpreted as avoiding because of anxiety.

 

Psychological tests show certain trends for other chronic illnesses. For example, people with OSA score highly for hypochondria- it does not mean they are hypochondriacs.

 

So, personality tests are normed to take chronic illnesses into account. Instead of norming them against the general population, they are normed against each subset of chronic illness. I hope that makes sense.



#3 doinmdirndest

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Posted 06 January 2014 - 12:36 AM

both studies and an extensive process of conducting intensively going on 4 years opening vast numbers of topic/replies in all forums has me awareness of factors suggesting that pwn are not inclined to addictive behavior.    as this process, one not unlike a homicide detective thumbing through vast amounts of paperwork, avails me of enough specifics from so many anonymized posts to accurately assess much.  I submit that the hypersoniac/narcoleptic community is almost absolutely berift of addictive risks.   in fact this group tends to be remiss when physicians suggest schedule II treatment options even as they may turn out beneficial.  my conclusion is that advisements and articles stressing the alleged addiction potential of these meds are most inappropriate insofar as they address our treatment alone, as opposed to also adhd patients, for example. also, these mediums are incorrect in any and all assertions along these lines.

 

pwn/hypersomniac community would do well were we to cooperatively produce substantive explainations of this, perhaps then creating advisements of our own distributable to professional communities involved in our healthcare. based upon minimal abilities left for such an effort as this leaves so many of us with, I find feasibility scant.  nonetheless, discard of extracurricular concerns and group cohesion may produce impact as would be of great benefit to our numbers.

 

also, when encountering materials suggesting upsurp or contestation of authority, pwn often have 'sheep -like' inability to take into consideration such things.  this suggests perhaps not a 'perfect candidates for enslavement' profile as the nature of our affliction means we do not have the energy for this sort of thing. yet if visibility can be clearly alingned in our view of the problem, there may be workable solutions.  

 

my investigation lacks anything inculpatory yet a very solid 'prima facie' case reveals widespread significantly sub- optimal healthcare of our group exists, lagely due to errant dose criteria in the prescribing of wakefulness promoting medication to treat eds.   this is to be found in manufacturers recommended maximums and AASM treatment options as advocated for by same.  also, an absence of the least suspicion by and large that anything within all such treatment reference resources may be in need of adjustments.



#4 GuiGui

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Posted 06 January 2014 - 11:19 AM

Hank--I understand your point about personality being a result of narcolepsy, and I think that's likely too. I still find it interesting, how N can lead to people having similar personality traits. Also I very much agree that such tests are biased. Sleeping all the time is a huge indicator of depression, and throws physicians off all the time from what I hear (and have experienced). I think some of the traits suggested are less obviously a result of N though, such as being critical of others, and being sarcastic.

doinmdirndest--I've also read about the resistance to addiction displayed by pwns. At least in my experience, I don't think this characteristic prevents experiencing withdrawal symptoms though. I used to take an SNRI and a benzodiazepine for depression and anxiety, and when I went off of them I experienced a lot of brain-zaps which is a typical withdrawal symptom. I wonder if it's just lack of desire to continue an addictive process that PWN have, or if for some reason I lack this characteristic. Also the "sheep-like" inability to take into account materials contesting authority doesn't ring true for my personal experience (obviously there is heavy bias there, no one wants to think they're sheep-like in any way). I gravitate more toward being rebellious and resenting authority figures. Where did you see that information? Could you post the link?
 

Thanks for the input guys, it was interesting to read. Does anyone know anything else? Or have an answer on whether PWN tend to have a heightened sense of smell or a dysfunctional one?


 



#5 Hank

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Posted 06 January 2014 - 01:30 PM

I don't see the benefit in "pathologizing"  the effects of living with an illness.

 

For example, I have often been called "moody" because that was the easiest explanation for others to explain my ups and downs. It is not moodiness- I just need to withdraw when I feel exhausted.

 

A family member strongly disagreed with my N diagnosis and insisted that I was actually Bi-polar. Her reason for this was to explain my why I alternated between high energy and low energy each day. I have just had to squeeze so much into the few good hours I have had each day.

 

I have been told I "over-react" to things- like being startled, when I go down to my knees.

 

There is also a huge difference between living diagnosed/treated and living undiagnosed.

 

I don't care for sarcasm- and I know plenty of people who are sarcastic who do not have Narcolepsy.

 

I think so many of us have lived with false accusations to easily explain our undiagnosed symptoms. That can take a toll. It is then our responsibility to live without that baggage.



#6 doinmdirndest

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Posted 06 January 2014 - 02:16 PM

it was 'doug, you're a loser. a lone wolf'   for me.   in fairness, dad also gave me the upringing a man of the old school gets.   that's how I became one myself, would never wish to be anything but.  

as for the others ?'s  i'll get back 2u w/more got to go.



#7 Ferret

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Posted 06 January 2014 - 11:53 PM

Wow, those links (with the exception of one) are so old as to be antiques in the narcoleptic world. They used to do shock treatment and lobotomies for some forms of mental illness in the "old" days too. I thought the comments to the last link the OP posted were very good.

Even the link that is the most up-to-date (http://brain.oxfordj...130/2/442.full) is, imho, flawed.
There is no mention of histamine levels in the narcoleptic patients which may account for their flawed sense of smell.

I just don't think that anyone can box up and wrap Narcolepsy or the people that suffer from it into such a tidy neat little package. Our symptoms vary, our meds vary...and the personalities we had before diagnosis (or before illness) also vary.
We are all as unique as stars in the sky as is our way of handling it.
And, for the record, my sense of smell is phenomenal as is my hearing. Of course, that could be because my eyesight has always been very bad. Be very wary of drawing conclusions without considering all the variables.

#8 doinmdirndest

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Posted 07 January 2014 - 02:52 AM

back in 90 I was housed w/about 4-8 squatters in a homeless camp. for my keen smelling I determined what food had begun to spoil.  'the nose' was my nickname. there.



#9 DeathRabbit

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Posted 07 January 2014 - 11:33 AM

My eyes, ears, and nose are all bad. My nose is always stopped up due to malformed nasal passages. My eyes are myopic and astigmatic. My ears have trouble with tinnitus and just hearing clear definition of sounds, because my ear drums were scarred by ear infections I had when I was a kid. I'm considering getting the scar tissue lasered off my ear drums. I've had at least two doctors think that my ear drum was ruptured when they first looked at it, but then they're like, "Oh, that's just a huge gash from a bacterial infection."



#10 oxymoron

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Posted 27 January 2014 - 07:57 PM

both studies and an extensive process of conducting intensively going on 4 years opening vast numbers of topic/replies in all forums has me awareness of factors suggesting that pwn are not inclined to addictive behavior. 

 

Keep in mind addictive behavior can take many forms besides chemical addiction.  I battled anorexia years ago and still battle food addiction in various forms.  Codependency is also a form of addiction- I battle that one as well.  I typically avoid any sort of substance that is addictive b/c addictions can change forms.  I'm pretty sure, left to my own devices and put in the right situation, I could be come a really good alcoholic.  Thus, I've had 4 whole drinks in my entire almost 33 years of life.  I'm not thrilled with the medication choices I will likely be facing in the near future.



#11 Hank

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Posted 27 January 2014 - 11:18 PM

Keep in mind addictive behavior can take many forms besides chemical addiction.  I battled anorexia years ago and still battle food addiction in various forms.  Codependency is also a form of addiction- I battle that one as well.  I typically avoid any sort of substance that is addictive b/c addictions can change forms.  I'm pretty sure, left to my own devices and put in the right situation, I could be come a really good alcoholic.  Thus, I've had 4 whole drinks in my entire almost 33 years of life.  I'm not thrilled with the medication choices I will likely be facing in the near future.

With stimulants, doctors usually recommend medication holidays. That way, you do not build up a tolerance and need increasingly higher doses over time.

 

When a tolerance develops and doses increase over time, you get the same effect but with waaaay more medication.

 

This is all part of responsible use. It becomes a problem the tolerance is treated with more medication, rather than a different medication. That is why so many people will try different stimulants at different times- so they don't wind up with a gigantic dose of the same medication they have been on for years.

 

If you are aware of this and have a history of responsible use, you should not run into the same trouble. Once you develop an emotional attachment to your medication you have a problem. If you think about it too much, you have a problem. If you love it and want others to love it too, you have a problem.

 

It should just be something you take- and nothing more.