8 replies to this topic

[eph]

I know there are a million other posts that address the same issues, but I felt like posting a more recent one.

I've been struggling with symptoms of N for years and I recently did a sleep study that was inconclusive, BUT the doctor has narrowed it down to Idiopathic Hypersomnia OR Narcolepsy, because I clearly have hypersomnia and I also have many N symptoms. I had to wait a month for my appointment (it's horrible trying to get into a doctor's office in Santa Barbara) so I won't see my doctor till April 4th.

 

At first I was so relieved even though I don't have a definitive diagnosis, because I thought to myself "VINDICATED AT LAST".

I was so excited to tell my friends and family that they found something and that I am not just a lazy blob.

 

However, upon my telling my boyfriend, mom, best friend and briefly mentioning it to a couple of people at work, I feel like they are being even HARDER on me now. How is that even possible?!?! I now just tell everyone I have Narcolepsy because when I even MENTION the possibility of IH I get these blank, zombie like stares almost as if I made up a sleep disorder as an excuse for poor academic and work performance.

 

At first, my mom reduced my illness to a fondness for naps and said "We can cure your nap problem" with natural remedies of course. She has long been convinced that sleep paralysis and HH are demons trying to attack me.

 

I kind of figured my mom was going to be a lost cause so that I can deal with but today I received the most hurtful reaction to my disorder when I was explaining to my best friend that my medication that I take to go to sleep at night was making me even more drowsy and tired and I felt a little more energetic this morning since I didn't take it. I told her I am going to talk to my doctor about switching medications to which she replied "Why don't you just not take anything?" I was dumbfounded. Her reaction indicated that no matter how many times I had explained N and IH to her and how I have a sleep study PROVING my problem, she just doesn't believe me and/or take me seriously.

 

Should I keep trying to get people to understand, or is it easier to just pretend you are normal and not tell people about your disorder unless absolutely necessary?

[munky]

Here's my suggestion:

1. Go to this post: http://narcolepsynet...ont-understand/.
2. Read the sample letter.
3. Either print out the letter and give it to the appropriate people, or copy/paste it and email it to them. You may want to make a few changes to the text to make it fit your own circumstances more closely.

Beyond that ... I'm not sure what to tell you. I've been very lucky in that my family and friends have all been very understanding, have apparently listened to everything I've told them, and have been very supportive.

[DeathRabbit]

I know there are a million other posts that address the same issues, but I felt like posting a more recent one.

I've been struggling with symptoms of N for years and I recently did a sleep study that was inconclusive, BUT the doctor has narrowed it down to Idiopathic Hypersomnia OR Narcolepsy, because I clearly have hypersomnia and I also have many N symptoms. I had to wait a month for my appointment (it's horrible trying to get into a doctor's office in Santa Barbara) so I won't see my doctor till April 4th.

 

At first I was so relieved even though I don't have a definitive diagnosis, because I thought to myself "VINDICATED AT LAST".

I was so excited to tell my friends and family that they found something and that I am not just a lazy blob.

 

However, upon my telling my boyfriend, mom, best friend and briefly mentioning it to a couple of people at work, I feel like they are being even HARDER on me now. How is that even possible?!?! I now just tell everyone I have Narcolepsy because when I even MENTION the possibility of IH I get these blank, zombie like stares almost as if I made up a sleep disorder as an excuse for poor academic and work performance.

 

At first, my mom reduced my illness to a fondness for naps and said "We can cure your nap problem" with natural remedies of course. She has long been convinced that sleep paralysis and HH are demons trying to attack me.

 

I kind of figured my mom was going to be a lost cause so that I can deal with but today I received the most hurtful reaction to my disorder when I was explaining to my best friend that my medication that I take to go to sleep at night was making me even more drowsy and tired and I felt a little more energetic this morning since I didn't take it. I told her I am going to talk to my doctor about switching medications to which she replied "Why don't you just not take anything?" I was dumbfounded. Her reaction indicated that no matter how many times I had explained N and IH to her and how I have a sleep study PROVING my problem, she just doesn't believe me and/or take me seriously.

 

Should I keep trying to get people to understand, or is it easier to just pretend you are normal and not tell people about your disorder unless absolutely necessary?

I usually make it out to be a brian injury/neurological condition, which it technically actually is. Also, to help people relate, I ask them to imagine anytime they've ever had to stay up more than 24 hours. Then I tell them to imagine feeling like that constantly, despite getting more than enough sleep. Usually that two-pronged approach gets people to agree, "man, that really does suck"

[sk8aplexy]

An interesting, recent, article covering some details that pertain:

http://well.blogs.ny...s-to-happiness/

 

I do seriously hope that Hypocretin, and/or Orexin, does not become the poster marker or whatever pin-pointer, in regards to 'depression' - this is not the first article/talk of it that I've seen, lately.

That is not to disagree that depression may relate closely, as the difficulties are real and in my mind pleasantness does not relate to depression... 

But, the way in which neurotransmitters are thrown around, and have been for a long while, in dx and tx is a bit discomforting somehow.

 

Regardless and unfortunately; Narcolepsy 'with Cataplexy' is an autoimmune disease of the brain. 

In time the terminology 'may' change, but only time tells.

[eph]

An interesting, recent, article covering some details that pertain:

http://well.blogs.ny...s-to-happiness/

 

I do seriously hope that Hypocretin, and/or Orexin, does not become the poster marker or whatever pin-pointer, in regards to 'depression' - this is not the first article/talk of it that I've seen, lately.

That is not to disagree that depression may relate closely, as the difficulties are real and in my mind pleasantness does not relate to depression... 

But, the way in which neurotransmitters are thrown around, and have been for a long while, in dx and tx is a bit discomforting somehow.

 

Regardless and unfortunately; Narcolepsy 'with Cataplexy' is an autoimmune disease of the brain. 

In time the terminology 'may' change, but only time tells.

 

Wow, that article just blew my mind!!! Just recently I was discussing with one of my good friends (who used to have a minor drug addiction) how I am pretty much immune to addiction despite a HUGE genetic predisposition due to TONS of addicts in my family. She isn't the first one to notice this about me either. I by no means play with fire and engage in dangerous activities, but I've been in situations where I easily could have developed an addiction (namely, living in a town that consumes more alcohol than most other places in the country and living with an alcoholic who is now my EX boyfriend). If what this article says is true, now I am even more convinced that I have N...

[sweetest_shone]

An interesting, recent, article covering some details that pertain:
http://well.blogs.ny...s-to-happiness/

I do seriously hope that Hypocretin, and/or Orexin, does not become the poster marker or whatever pin-pointer, in regards to 'depression' - this is not the first article/talk of it that I've seen, lately.
That is not to disagree that depression may relate closely, as the difficulties are real and in my mind pleasantness does not relate to depression...
But, the way in which neurotransmitters are thrown around, and have been for a long while, in dx and tx is a bit discomforting somehow.

Regardless and unfortunately; Narcolepsy 'with Cataplexy' is an autoimmune disease of the brain.
In time the terminology 'may' change, but only time tells.

[sweetest_shone]

An interesting, recent, article covering some details that pertain:
http://well.blogs.ny...s-to-happiness/

I do seriously hope that Hypocretin, and/or Orexin, does not become the poster marker or whatever pin-pointer, in regards to 'depression' - this is not the first article/talk of it that I've seen, lately.
That is not to disagree that depression may relate closely, as the difficulties are real and in my mind pleasantness does not relate to depression...
But, the way in which neurotransmitters are thrown around, and have been for a long while, in dx and tx is a bit discomforting somehow.

Regardless and unfortunately; Narcolepsy 'with Cataplexy' is an autoimmune disease of the brain.
In time the terminology 'may' change, but only time tells.

Definitely interesting article.
I can relate to the non-addiction thing.
From alcohol, to tobacco and other things that teenagers do... None of those things ever stuck with me. Never interested me. I always thought of myself as not having an addictive personality but this kind of throws in another way to look at it. I'm not saying its true of myself, I'm just saying its something to think about.

Also, Sk8aplexy, this is a good link to post for alllllll those people who are Dx with depression and MD's won't even give the time of day to bother that there might be something more, something deeper going on. This article said something like PWN are SIX times more likely to be depressed.. That's a huge number!!! Just something else to keep in mind when someone is seeking help/answers on here.

Ok, I'm done blabbing!!

[DeathRabbit]

Most types of depression, just by themselves, result in anhedonia. That's why depressed people lose interest in things they used to love doing. Occasionally, you'll get the depressed people that develop a psychological dependance on something to "forget their woes" so to speak, but in general, they are free from addiction, because they just don't care about anything. Throw in the hypersomnolence and you run out of *BEEP*s to give pretty easily. Which is great in terms of addiction, less great for trying to maintain relationships, careers, etc. So yea, we get a triple whammy with N. It causes a neurochemical depression, sleepiness, and also just good old fashioned regular depression due to the struggle and laments of having to live with N. Makes it it really difficult to care about anything, much less a "fix" of anything. It's to the point with me that if I get through a day without harming my career, my relationships, or hurting anyone (emotionally, though if any stranger cared to pick a fight with me these days, instead of opting out, I'd most likely send them to the ICU) I consider the day a success.

[sk8aplexy]

When in my teenage years I spent a lot of time, in fact each year, down in Central America. 

I saw and experienced a different style of life, perhaps something similar to a century ago, in terms of community/people.

Being so near and immersed in such, so often, it is a part of me and how I view the world, life.

By the end of high school I'd experienced real depression and by the end of college it had been likely quite severe, yet I persevered and grew in ways from it all; years later I finally discovered and recognized the terms Narcolepsy with Cataplexy even though I've always lived with such, but am stubborn and don't believe in much that is 'general or normal' so to speak...

All that I'm saying, is that it is important to recognize much more than one's own place and/or self, that the world is fascinating and the times we are living in are beyond fascinating.

That there is, and are, always others in a worse situation and/or place, regardless.

That's not to say ignore yourself and/or situation/s, just to say remember that there is much more than one's self.

In my mind, I can't help feel that we all, regardless, are connected in more ways than not and to just live one instant in today's realm is something incredible and was non-imagine-able, even a decade ago...!

 

 

-And, apologies, if I've completely side-tracked the post/topic.-