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#1 lyssy813

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Posted 17 November 2013 - 09:28 PM

So, I hate to sound like a broken record and hopefully no one is too annoyed that this is going to be another "just diagnosed" post.  I LOVE reading those posts, but again, I'm newly diagnosed, and it's still fascinating to me that A.) I'm narcoleptic and B.) this completely fantastic site is here and I'm not the only one, even though in day-to-day life, it certainly feels that way.

 

Anyway, let me just say first off, I'm just venting here - I'm really not normally a pessimistic person, so thanks for 'listening' because I've got a lot bottled up.  My family knows of the diagnosis, but no one gets it, which makes it so I have no one to really talk to.  I don't expect them to understand how I feel and have felt the last 15 years, however, it would be nice of them to read up on the subject so their opinions at least have some value to me.  I know, it sounds snooty and cold, but seriously, their opinions are expressed in the most arrogant way (about treatment options, etc.) but they know nothing about narcolepsy so how can they say 'this treatment is bad, this treatment is good' when they can't begin to comprehend the scope of what I've gone through/am going through?

 

Besides that, the diagnosis alone is infuriating!!!  When it was first brought up as a possibility, I felt AWESOME!  Like, YES, there's a possibility that I'm not crazy?!?!  And then I just thought it was kind of funny.  And then came the thought of "wt****", because long ago, I saw parts of a ridiculous (and seriously stupid) movie where a narcoleptic fell asleep while trying to roll a bowling ball down the lane and she went with it (I'm sure some of you know what I'm talking about). So then a few weeks later, after I had really started to understand what this was, I became super, um, mad, to put it nicely.  I've gone through a lot, as I'm sure everyone else dealing with this has and I feel absolutely robbed.  Don't get me wrong, after a ton of idiotic mistakes and stupidity on my part in my teens and 20's, I found an awesome church support system (or was - in one way or another (long story) - court ordered), I tightened up, and I now have an awesome family,  job (that I really do love), life, etc.  I'm truly blessed, I recognize that, and I'm not trying to undermine or undervalue any opportunity that has been undeservedly and freely given to me.  At the same time, when I think of everything I did prior, everything went through, everything I didn't do, the constant and everyday judgement I've endured, etc., I can't help but just sob.  

 

There is so much I still don't understand and so much that makes so much more sense now.  

 

  • I totally don't get cataplexy. There are so many different symptoms considered to be cataplexy from the extreme to the barely noticeable, why don't they just say "we don't know either".  It's with the very subtle symptoms, I'm just not convinced there yet.   
  • Do I tell my employer, don't I?
  • Xyrem scares the crap out of me, but I have to give the doc a treatment decision very soon.
  • Is this an issue for a sleep specialist to treat, a neurologist, a psychiatrist?  As in the follow-ups.

 

Okay, I suppose that is enough now.  Again, thanks for listening.  I'm sure I'll think of a billion more questions after this. ;) And first impressions are everything so I'm sorry the first one I'm making is so whiny sounding... This site truly is awesome.  I love that all the feedback I've read in every post is so positive and encouraging.  You all are a genuine, empathetic, and wonderful group of people and thank goodness for you!!!  :)  



#2 Hank

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Posted 18 November 2013 - 10:26 AM

Ok- here you go.

 

Take a deep breath and slow it all down.

 

There is no need to tell your employer your diagnosis- TMI. You can, however, request an accommodation if that would help you. I would suggest waiting to do so until you better understand all of this.

 

As far as your family understanding- don't expect too much of them. It is hard for anyone to grasp.

 

Don't be in too much of a hurry to jump into Xyrem. It is not an overnight miracle cure. It is a commitment to a process that takes months to see any benefit. During that time, you may experience side effects. Some people feel worse before they begin to feel better with Xyrem. So, it and when you decide on Xyrem, choose a time when your stress is reduced, you have lots of support, you have flexibility at work.

 

Regarding cataplexy- give yourself time to understand it. For many, myself included, we have learned to avoid triggers of cataplexy in our lives (slowly over time) so that it becomes hard to recognize.  For me, I avoided belly-laughs, being the center of attention, rushing, catching balls. So, the answer to "do I experience catalexy" is not easily apparent.

 

Here are some cataplexy red flags to consider:

- feel trembly sometimes- almost like "butterflies" in stomach but more.

- noodle leg feeling after laughing, exercise, surprise.

- clumsy or unexplained falls where you landed like a sack of potatoes in slow motion.

- sometimes hands feel awkward or fumbly.

- you feel like or have been told that you have a lot of quirks. You feel like you have to be guarded about when/where you will be at your best.

 

The best doctor to help you is a Neurologist who is fellowship trained in Sleep Medicine- not a pulmonologist, not primary care doc.

 

I also recommend seeing a psychiatrist as a resource for evaluating medication side effects. These docs know side effects.

 

I hope this helps.



#3 b.chrissie@yahoo.com

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Posted 18 November 2013 - 11:54 AM

lyssy813- I don't think you sound whiny at all...you sound a lot like the rest of us. It's such a difficult journey and no one, except those who have it, even seem to understand a little bit. And I am glad you asked about the docs. I am currently seeing a sleep specialist for my N, but I have been thinking about seeing a neurologist. It's a tough thing to deal with being that there are so many unknowns.



#4 sk8aplexy

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Posted 18 November 2013 - 11:57 AM

Great advice Hank.

I'll add just a couple Cataplexy red flags/tips, some are just differently worded:

-sensations throughout the head and/or body, or body part, which feel like waves, muscle flickering, an electrical short/interference.

-a sudden frozen feeling (usually accompanied by sensations, mentioned above).

-a brief slouching or drooping of the jaw, head and/or neck.

-perhaps arms go slightly limp and/or drop to your side from having them up, possibly a sudden feeling of brief weaknace.

-a difficulty in speech (for instance mumbling of having to pause) when responding, continuing to speak, or maintaining some response to, or during, something perhaps funny (like telling a joke), or when trying to answer some question (be it unanticipated or not) which has struck a nerve (be that, humorous or pleasant).

This last tip is something I personally feel strongly about, as it's something I figured out with my own Cataplexy to be very helpful, that fighting and/or resisting a Cataplexy episode/attack only intensifies and prolongs it; the best thing I can do (when it is hitting) is relax, breathe and focus on my center/core, letting go (forgetting briefly) of whatever funnyness or image / emotion that triggered it...

 

It seems very common for people (myslef included) to live with such, in various manners and/or various effects, for quite a long time before realizing, learning and recognizing it for what it is.  In that prior timeframe there are many adjustments made, quite unconsciously, which are as subtle and near invisible to note, as the Cataplexy itself. 

Many, if not all, the symptoms of Narcolepsy seem to have this odd mannerism; I didn't even realize that I was tired until way after I'd discovered the word Cataplexy at 28 years old, I'd thought I was fatigued (which I was to a large extent on top of tired).  That is to just say the more you learn and read, especially that comes from others experiences and advice or recommendations from living with it, the better grasp on your own that you will perhaps achieve.



#5 ironhands

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Posted 18 November 2013 - 12:40 PM

How many neurologists are also trained in psychiatry?  Aren't they usually a 60/40 split (one way or the other) between the two?  I wouldn't definitely avoid pulmnologists, as they deal more with the mechanics of sleep... snoring/OSA, etc.  I see them more like a mechanic, where a neurologist is more like an engineer.

 

I still don't understand the symptoms of C, and how/if they manifest beyond dropping like a sack of potatoes.  I'm clumsy, my handwriting is crap, I get physically weak after exertion (though not out of breath).. and have a weak sensation when anxiety hits.  Maybe it is, maybe not, it's really hard to tell.



#6 lyssy813

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Posted 18 November 2013 - 01:49 PM

I don't plan on immediately diving in with the family, employer, doctors, treatments, etc., I was just unloading.  I really appreciate everyone's feedback! 

 

Wow, Sk8aplexy, you just wigged me out a bit... Some of the examples you listed are exactly what I experience - I've always chalked it up to nerves and/or feeling pressured.  I get the wave feeling, or what I describe as roller coaster feeling, when I'm caught off guard or suddenly feel unprepared for something, such as someone approaching me and asking if they can talk to me about something.  I also stumble on my words and pause while speaking as if I keep losing my train of thought but only when it's one-on-one with someone I feel inferior to. It's kind of strange because I'm great with speaking in front of a crowd, giving presentations or meetings, I actually prefer it, but if I'm speaking one-on-one with my boss (who by-the-way, is the kindest and most understanding man in the entire world) this still happens and I feel like and sound like such a fool.. ugh.   The more I learn each day, the more mind blown I am....

 

Also, *change of subject* I can't begin to count how many fights my husband and I have been in because he'd have told me something such as, 'I'm going to be at so-n-so's on Saturday to help them fix something', then comes Friday and he mentions it to me again only I insisted he never told me. And I was totally serious. I honestly thought (and at the time told him) he was crazy and delusional. Turns out it was me!! 

 

Well, thanks for the feedback again.  I'm really eager to learn more about this and read up on what everyone has to say on this site. Such a great tool!  



#7 sk8aplexy

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Posted 18 November 2013 - 02:23 PM

My bad, not my intent to do such, I wanted to break it down in my own way to add to what Hank had said.  

Know Cataplexy, as Narcolepsy also, is complex and beyond complicated; much of each symptom is confusable with many, so-called, normal things, behaviors, occurrences.

For instance, everyone can relate to being tired, and being fatigued is variable too. 

Cataplexy can be awfuly difficult in the same sort of manner, to a large extent, that is outside of collapsing ("clear-cut Cataplexy" = triggered collapse, remaining fully conscious but muscles paralyzed) or having arms go entirely limp (triggered loss of muscle tone), such are what I'd describe as the more severe to moderate/minimal sorts of effects of it (yet of course there are further extremes for some).

 

Sensations during hightened nerves and/or frustration/s, "rolling on the floor laughing (ROFL)" are quite, so-called, normal occurrences, things to experience and please don't 'fret' on any of it, or focus too much so upon it.

Just pay attention to your own physical and mind state/s, try to remain stress/anxiety free (as such are often hugely relevant to symptom frequency or occurrence/s).

Don't be frightened by what has ben said here, whether you experience Cataplexy or not is really out of any's control; and it ain't so bad, adjusting happens both consciously and/or unconsciously, regardless.

Know that, you can be more aware with knowing of such now, and perhaps (hopefully) it will help you in some way/s, in the future.

 

I'd been collapsing and going entirely paralyzed for a brief 5-20 seconds for a good 8 years, from laughing, being complimented, asked for change ($) on the street, smiled at unexpectedly, being very suddenly angry or frustrated (most often relating to health matters); before age 28, when I searched the internet for "laughter AND paralysis".  And, if I had the opportunity, I wouldn't trade the hand of cards, in life, which I was dealt.



#8 lyssy813

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Posted 18 November 2013 - 02:37 PM

No worries, I didn't mean that in a bad way.  More like a revelatory way; a light bulb switched on.  Your feedback is much respected and appreciated!