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Hey Everyone...22/m...could Use Some Support


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#1 tis91

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Posted 04 December 2013 - 01:13 PM

A bit of history:

 

> My dad has N

> Older brother has N

> I have been treated for ADD/Depression since I was about 12, using ampethamines/zoloft.

> Started first job, working/worked Graveyard/rotating shifts- mom feels that triggered N

> Currently awaiting DX, wearing a EEG thing at the moment :)

> Anything else...just ask :)

 

Hope to help others and get some help as I deal with N, as I am nearly certain I have it.



#2 Hank

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Posted 04 December 2013 - 03:31 PM

So all that family history of N and it is just being suspected? At least you were treated.

 

Working nights and rotating shifts will not "trigger" N but they can certainly make the symptoms worse. The less you guard your sleep the worse/ more apparent the symptoms become.

 

What kind of doctor is doing your EEG? Is this an at home EEG or part of an MSLT.

 

 

Considering your family history, be very cautious about accepting a diagnosis for anything other than N unless you have had an MSLT with a qualified Sleep Medicine specialist.

 

I hope you find your answers.



#3 tis91

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Posted 04 December 2013 - 09:42 PM

"

So all that family history of N and it is just being suspected? At least you were treated.

 

Working nights and rotating shifts will not "trigger" N but they can certainly make the symptoms worse. The less you guard your sleep the worse/ more apparent the symptoms become.

 

What kind of doctor is doing your EEG? Is this an at home EEG or part of an MSLT.

 

 

Considering your family history, be very cautious about accepting a diagnosis for anything other than N unless you have had an MSLT with a qualified Sleep Medicine specialist.

 

I hope you find your answers."

 

I know that it can't be triggered, per se, I guess I meant that it exacerbated it enough to become a problem that my current medication is not able to control. :)

A Neurologist who treats my dad is doing the testing. Its just a 24 hour at home EEG.



#4 tis91

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Posted 11 December 2013 - 01:48 PM

Well...I was certainly hoping to get a bit more input/support/welcome, but hey...que sera sera. 



#5 Hank

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Posted 11 December 2013 - 03:13 PM

Well...I was certainly hoping to get a bit more input/support/welcome, but hey...que sera sera. 

 

Spend some time reading posts and asking questions and responding to others and see where that takes you.

 

Everyone using this forum is dealing with the same overwhelming exhaustion as you. None of us are volunteers and nobody gets paid to participate.

 

There are not a lot of resources for any of us so we all have to make the most of what little we do have.

 

What were the results of your EEG btw.

 

You actually have a lot to offer to others since you have a father and brother with Narcolepsy. Many of us have never met anyone else with this.



#6 britneyadams

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Posted 11 December 2013 - 05:36 PM

In third grade, I was diagnosed with ADD without Hyperactivity.  Personally, I can trace symptoms of N back when I was a toddler.  However, it wasn't until I was a senior in college that my symptoms became exacerbated enough to warrant alarm.  Interestingly enough the journey started with gastroenterology.  In the three years since then, I have learned that my grandfather had N, and my mother was diagnosed last month.  But neither can provide much insight.

 

I'm not sure what you're looking for in your post, but I will say that N is a forever thing.  It is a heavy diagnosis and requires lifestyle changes.  For example, I have been paying my way through school as a cocktail waitress.  Because of my new sleep schedule, I had to quit.  Now my finances are looking pretty bleak.. I'm scared.  But I have better health and I will be able to continue in my academic program.  So, perhaps it was worth the trade off.  A diagnosis either way will bring answers, but be ready for what it means to have Narcolepsy.  

 

Also, have you gone for a sleep study?  I am aware that there is some blood testing that could be done.  What will the EEG tell you in terms of diagnosing N?



#7 narcolexie

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Posted 12 December 2013 - 10:51 AM

My daughter recently graduated with a bachelors degree in dental hygiene. She reluctantly reported her diagnosis to the department chair and got accommodations to stand during class and tests and to get extra time on tests if she needed it. One of the instructors questioned her ability to practice dental hygiene to the point of trying to get her out of the program. Fortunately level heads prevailed and she was allowed to prove herself. She graduated with honors and received several awards.

 

The it was a full time program so she was unable to work during school. She did several things that helped her get through in one piece:

* she got student loans that covered her tuition and fees, housing, car payments, insurance, and food. she had a pretty big loan to pay off when she graduated, but it was worth it.

* she found a house that was set up for 4 roommates - community living and kitchen areas and private bedrooms with locks. This was less expensive and allowed her to feel safe when taking Xyrem - she wouldn't take it when she was alone.

* she stayed on my insurance until she turned 27 - that is the new regulation with Obamacare. My insurance paid for her medications including the Xyrem. She also signed up for the Xyrem coupon that reduced her copay to 75.00 per month.

* Her Dr at the time told her that her brain worked differently than others and showed her a form of speed reading - it really worked. I read several of her textbooks into a recorder so she could listen to them during her commutes.

* she developed several tricks to take tests - using her new knowledge of her brain - she also requested extra time to take the tests if she needed it

* her weight fluctuated to extremes - at one point she was so thin we were worried about her. She would also go on eating binges and would get what she called her "food baby". we have since learned through this forum and others that low carb (think Atkins) and gluten free are the best eating plans for people with N.

* the stress would get to her and she would have manic episodes after taking her Xyrem - the only thing I could do was listen and try to keep her calm until... silence - she was out.

* She had great difficulty being alone even when not taking Xyrem. If her roommates were gone - she would travel 50 miles to stay with her grandmother or friends. She is only recently overcoming this.

 

I know how difficult it is to go through this with someone - I can only imagine how hard it is to be that person. I will let my daughter know you are here and she may be able to give you more help than I can. It would probably help her right now also. The most important thing to remember is that YOU ARE NOT ALONE!  I wish she had known that back then.



#8 DeathRabbit

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Posted 31 December 2013 - 10:32 AM

So all that family history of N and it is just being suspected? At least you were treated.

 

Working nights and rotating shifts will not "trigger" N but they can certainly make the symptoms worse. The less you guard your sleep the worse/ more apparent the symptoms become.

 

What kind of doctor is doing your EEG? Is this an at home EEG or part of an MSLT.

 

 

Considering your family history, be very cautious about accepting a diagnosis for anything other than N unless you have had an MSLT with a qualified Sleep Medicine specialist.

 

I hope you find your answers.

While I agree you probably can't give yourself N (unless you purposefully inflict a traumatic brain injury, in which case N may not be your biggest concern :P ), I think it's possible that if one had a very mild case of N, wherein the automimmune activity had been very light, you could still maybe deplete your hypocretin to a point that it could never really recover properly, since your regeneration of the neurotransmitter would be slower than a normal persons. Also, starved and antagonized/inverse agonized receptors have been shown to actually die if they have a chronic dearth. So I think it's possible you could, in effect, transform yourself from a person that just has to sleep slightly more, to a much more ostensibly obvious case of N. The moral of the story is sleep is important, and the effects of chronic sleeplessness are still poorly understood, with some scientists even claiming that going too long without sleep for a singular period could trigger dormant psychiatric disorders or even cause mild brain damage. So even for all you "normies" out there reading this, sleep is important! Don't miss it!!!



#9 Hank

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Posted 31 December 2013 - 03:13 PM

I agree. Narcolepsy is an extreme diagnosis. In order to be diagnosed we need to have hit REM twice (at least) during our MSLTs- and that is extreme.  Without that, we would remain undiagnosed.

 

We can be well managed or poorly managed and our symptoms will become more or less severe. But we will always be on the extreme end of the scale, give or take.

 

In principle, it is like being a Type I diabetic. Our immune system attacks cells and what's done is done. Diet and lifestyle can make it harder or easier to manage but it will always have to be managed. The best we can have is a mild presentation of an extreme condition.



#10 carrieannburns

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Posted 17 April 2014 - 07:13 AM

A bit of history:

 

> My dad has N

> Older brother has N

> I have been treated for ADD/Depression since I was about 12, using ampethamines/zoloft.

> Started first job, working/worked Graveyard/rotating shifts- mom feels that triggered N

> Currently awaiting DX, wearing a EEG thing at the moment :)

> Anything else...just ask :)

 

Hope to help others and get some help as I deal with N, as I am nearly certain I have it.

 

 

 

Sounds like these support groups would benefit you a lot!!

 

*Groups I Find Priority (Most Helpful)*: 

 

 

For Young People With Narcolepsy:

  1. Narcolepsy Youth: https://www.facebook...97366243659141/
  2. Young Adults With Narcolepsy: https://www.facebook.com/groups/YAWNs/
  3. (NAPS) Narcolepsy Awareness & Peer Support: https://www.facebook...ups/NAPS.group/
  4. Young People With Narcolepsy:https://www.facebook...ungPeopleWithN/

 

For Students With Narcolepsy:

 

Students With Narcolepsy: https://www.facebook...65929143438477/

 

 

 

Family Narcolepsy Related:

 

Family Members Of People With Narcolepsy: https://www.facebook...lymembersofPWN/

 

Families With Narcolepsy: https://www.facebook...s/363274095667/

 

Narcolepsy Network Family Members Support: https://www.facebook...4564/?ref=br_rs

 

Narcolepsy & Cataplexy Related Groups:

 

Narcolepsy / Cataplexy Education Focused Group: https://www.facebook...62971610542154/

 

People With Narcolepsy / Cataplexy: https://www.facebook...60978637260153/

 

Cataplexy With Narcolepsy: https://www.facebook...1987/?ref=br_rs

 

Support Narcolepsy and Cataplexy Petition:https://www.facebook...2017/?ref=br_rs

 

Narcolepsy & Cataplexy: https://www.facebook...6253/?ref=br_rs

 

Narcolepsy And Cataplexy Appreciation:https://www.facebook...8864/?ref=br_rs

 

 

Themed Narcolepsy Groups:

 

Art:

 

N[Art] (Narcolepsy Art): https://www.facebook.../narcolepsyart/ 

 

Other / Misc. :

 

Lifestyle Change For The Sake Of Narcolepsy: https://www.facebook...36055773234497/

 

Narcolepsy Gamers: https://www.facebook...y.Gamers.Group/

 

People With Narcolepsy Pen Pals: https://www.facebook...colepsyPenPals/

 


Also you should try to get your family to join some of these as well!!

 

Spouses With Narcolepsy: https://www.facebook...5061/?ref=br_rs

 

Married To A Narcoleptic: https://www.facebook...80663662022594/