214 replies to this topic

[aimeemerr]

Hello Everyone! My name is Aimee, I'm 24 years old and was diagnosed with narcolepsy 2 years ago. I first started having symptoms around the age of 16 - and went undiagnosed for 6 years. It was a very frustrating process, going to the doctors being tested for everything- everything coming back negative. It got to the point where the doctors felt it was something in my head. After I graduated from nursing school in 2005 I had my tonsils and uvula out because they thought my sleepiness may have something to do with sleep apnea- the surgery did nothing. A repeat sleep study after this surgery FINALLY diagnosed me with narcolepsy. Quite honestly it was really nice to finally know that there WAS something wrong with me and it WASN'T in my head. I am currently treated with Xyrem and work as a psychiatric nurse with children!! It's nice to meet all of you

[Lovemyhusband]

Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.

Hi Dustin.

It seems like early thirties is the time to dx. My dh was 34 when he finally got his answer.

[Lovemyhusband]

Hello Everyone! My name is Aimee, I'm 24 years old and was diagnosed with narcolepsy 2 years ago. I first started having symptoms around the age of 16 - and went undiagnosed for 6 years. It was a very frustrating process, going to the doctors being tested for everything- everything coming back negative. It got to the point where the doctors felt it was something in my head. After I graduated from nursing school in 2005 I had my tonsils and uvula out because they thought my sleepiness may have something to do with sleep apnea- the surgery did nothing. A repeat sleep study after this surgery FINALLY diagnosed me with narcolepsy. Quite honestly it was really nice to finally know that there WAS something wrong with me and it WASN'T in my head. I am currently treated with Xyrem and work as a psychiatric nurse with children!! It's nice to meet all of you

Hello Aimee I'm glad you joined us.

psychiatric nurse....that must be rewarding and depressing at the same time.

[daveislate]

Hi everyone! My name is Heather, and I was informally diagnosed with narcolepsy in 2002... Long story short, my neurologist at the time based his diagnosis on my family history (i.e. older sister & grandfather with narcolepsy) and my symptoms, so I did not go through the sleep study initially. I recently moved (from GA to MN) and had to find a new doc here, and my new doc insisted (probably rightfully so) that I go through the sleep study before he'd start treating me. So I was only formally diagnosed in January this year. It was good to have official confirmation finally... The last few years have been difficult as I have had family & friends doubt my diagnosis because I never did the sleep study... I began doubting myself even! But wow! what a relief! Not to have narcolepsy, of course, but to be free of doubt now.

I admit I have been "lurking" on these message boards a little bit, but I wanted to formally introduce myself now because I am relieved also to have found such a supportive & understanding community here. I look forward to participating more in the future.

[Lovemyhusband]

Hi everyone! My name is Heather, and I was informally diagnosed with narcolepsy in 2002... Long story short, my neurologist at the time based his diagnosis on my family history (i.e. older sister & grandfather with narcolepsy) and my symptoms, so I did not go through the sleep study initially. I recently moved (from GA to MN) and had to find a new doc here, and my new doc insisted (probably rightfully so) that I go through the sleep study before he'd start treating me. So I was only formally diagnosed in January this year. It was good to have official confirmation finally... The last few years have been difficult as I have had family & friends doubt my diagnosis because I never did the sleep study... I began doubting myself even! But wow! what a relief! Not to have narcolepsy, of course, but to be free of doubt now.

I admit I have been "lurking" on these message boards a little bit, but I wanted to formally introduce myself now because I am relieved also to have found such a supportive & understanding community here. I look forward to participating more in the future.

Hey Heather, Thanks for taking the time to introduce yourself. I am sure (for most people) its better to have the definite answer as opposed to the "I think" answer.

see you around

[aimeemerr]

Hello Aimee I'm glad you joined us.

psychiatric nurse....that must be rewarding and depressing at the same time.

Thanks for the welcome! Yes indeed my job has its rewarding times and the not so fun times but all in all I love it! For the most part it keeps me running on my feet for 8 hours - so I kinda forget about how tired I am!!

[chrissy]

Hi, My name is Chrissy and I was diagnosed this past February with N. I am 40 years old and started having symptoms EDS, and some minor cataplexy about 2 years ago after having a concussion from an automobile accident.
It is very nice to meet everyone.

[Lovemyhusband]

Hi, My name is Chrissy and I was diagnosed this past February with N. I am 40 years old and started having symptoms EDS, and some minor cataplexy about 2 years ago after having a concussion from an automobile accident.
It is very nice to meet everyone.

Hello Chrissy. I'm glad you introduced yourself. Enjoy your Mother's Day.

[Lovemyhusband]

bump

[bagpuss]

CONGRATULATIONS HELLO BUMP.BIG BIG HUG FROM ACROSS THE SEA XXX

[Jayebird]

I am new to the group. Thanks for all the postings. It is so nice to be here where people understand what you are talking about and what you are experiencing.

I have been diagnosed with N for 3 years and sleep apnea since 1990. I had been on Provigil but am now only on Ritalin which I take for unplanned driving trips. I have mild cataplexy (when laughing), the hallucinations, horrible night dreams, and EDS. I have learned to cope even though it is not easy.

Does anyone have any suggestions on how you explain this to others especially your boss, your best friend, your coworkers?

Thanks again. I will be back.

Jaye

PS: Where is the sleepy emoticon?

[greatbig47]

I am new to the group. Thanks for all the postings. It is so nice to be here where people understand what you are talking about and what you are experiencing.

I have been diagnosed with N for 3 years and sleep apnea since 1990. I had been on Provigil but am now only on Ritalin which I take for unplanned driving trips. I have mild cataplexy (when laughing), the hallucinations, horrible night dreams, and EDS. I have learned to cope even though it is not easy.

Does anyone have any suggestions on how you explain this to others especially your boss, your best friend, your coworkers?

Thanks again. I will be back.

Jaye

PS: Where is the sleepy emoticon?

Jaye...

So nice to have you on board!

There's the pre-question to your question...DO you tell your boss, your best friend, your coworkers? For me, my friends have to know.

PS: Where is the sleepy emoticon?

Yeah! Where is it!?!?!
hehehe...I'll have to find one for sure!

[Jayebird]

[quote name='greatbig47' date='Jun 19 2008, 04:18 PM' post='3798']
Jaye...

So nice to have you on board!

There's the pre-question to your question...DO you tell your boss, your best friend, your coworkers? For me, my friends have to know.


I have told them. They either do not believe me or respond like you need to get to bed earlier, you stayed up too late last night, you are partying too much, you need to change doctors, why are you so sleepy, etc, etc. My best friend says that I change jobs too much, I cannot keep a clean house, that I am not as successful as I should be, that I should be more active, that I sleep too much. So I guess I should rephrase my question, how and what do you tell them. Can you point to anything on the web?

[greatbig47]

Can you point to anything on the web?

Your there, brother...

Welcome to the group of hundreds that know exactly what you're tallking about. If I ever get accused of being out too late again I swear to GOD I'll go postal.

"What's wrong, Stu? You look lost"

Then I realized I have a choice....

1) Educate and bootstrap the person from their ignorance
2) Don't waste my time

We have no real obligations...The choice is up to us.

The last NN conference I was blessed enough to attend, the shuttle-van driver was asking about Narcolepsy. He (in all his head-up-his-butt wisdom) said what I needed to do is to have a glass of warm milk before I go to bed every night..."That's all you really need to do"

I wanted to punch him in the throat, but I was at the conference by then, and he didn't seem worth wasting my breath on. I smiled and "forgot" to tip him.

Some words have conontations (sp?), and Narcolepsy packs a pretty negative punch (thanks to ignorance). It's okay to choose NOT to use that particular label...

Alternatives:

1) Auto-Immune Disorder
2) Rare sleeping disorder
3) Hypocretin Deficiancy

There's a reason we commonly use "N" instead of "narcolepsy".

You can't be responsible for your friends and co-worker's ignorance. You have the freedom to educate (or not to educate) them.

Jaye, my friend...be happy...be well...and know you are not alone. We ALL know what your going through, and we're all behind you.

-Stu

[sleepylama]

I am w/you Stu! Oh if I had the desire and energy to reply to some of the things people say....hehe...

Truly though, some people are ignorant and have opinions already formed in their heads of people w/disabilities. Some people are ignorant and in denial as if they are invincible, because denial is easier than being educated, compassionate, or concerned. Then there are your true blue friends and family that even though they do not understand fully, they respect what is going on, try to help and learn, and when they say stupid things and you call them out, admit to their faults and try to learn more about what is wrong.

I have found that when people say things such as the glass of milk comment or other things like needing more sleep, just 'try harder' (I LOVE that one!), etc. I try to remember my canned response. I tilt my head to the side and say 'thank you for suggestion, it was very thoughtful. I hope you are never faced with an illness like this, but if you are, you already have ideas on how to fix it, which is great!" But if the comment really frustrates me, I am 'lucky' (hehe) that my cataplexy will usually kick in and my mouth will not work...that is my most common none full-body cataplexy...it is a shocker on people to see someone try to speak and their tongue and mouth are just hanging there non-responsive.

As to what I call it, I usually just say Narcolepsy and if they ask what it is, I say it is a neurological disorder where my body is no longer capable of determining when to be awake or asleep so part of my brain is always asleep. For those who inquire further I usually explain the things like automatic behavior, hallucinations, etc...mentioning feeling the need to sleep all the time just doesn't register w/people it seems. I guess for those who really want to know, I don't sugar coat it, but I am careful w/who I talk to and I think I have mentioned it in other threads that I feel strongly about caution w/employers and such.

In summary, those who really care and really want to be educated, I talk to them and am grateful for having them in my life. For others, I really try not to get frustrated and remember their ignorance is not necessarily a personality flaw, but true ignorance and I 'try' not get frustrated, but it does get the best of me at times as well.

[chellez]

My name is Michelle and my husband was diagnosed recently with N. He is really happy to finally be diagnosed, but is still looking for the right prescriptions to work out.
We have 4 children and wonder if possibly 2 of them have N as well. I already have appointments with the pediatricians to get them checked out and then referred for neuro consults.
Lately, it's been very hard to keep trying to be supportive with the N.
The last meds were awful in my view, but he says different.
How do I keep supporting him and get him to feel good again?
We've been together 19 years and sometimes I just want the person I met back then and not the N husband that came home 8 years ago from business trip that wasn't "feeling right."

Thanks for all your support you have here.
Michelle

[Protectionlady]

Hey! I popped in because I was feeling a little useless and iscolated around my family today, and i read "the adventure of a narcolepsy man", and LMAO! I woke up from a nap this afternoon with some wierd symptoms, unbalanced walk, a bit lathargic, and slow to react to everyone and of course not very talkative. I was sittin on the couch with my "social life" my laptop and busted out lauphing. Thanks for being there.

[xiola23]

Hi everyone! Nice to 'meet you all'!
My name is Katrina, but you can call me Kat. I was dx'd dec. 11, 2007 after about 10 years of seeking answers to my severely increased symptoms. I have always been a tired and sleepy person but always battled it and was able to keep it under check..for the most part. When I hit age 23 is when it got SUPER bad. I lost pretty much everything i worked so hard to built up in my life, including my home, my boyfriend of 8 years, alot of my friends, 2 really really awesome jobs and lost alot of respect from people in my life. Being told it was probably just mental or emotional problems for years increased my mental and emotional status because I just didn't feel 'crazy', but was getting 'crazy' for being told i was CRAZY!. lol
The most bitter sweet moment in my entire life was the day I got my dx. Finally I had answers, but the answers didn't fix the problem...I'm sure all of you can relate.

Hope to chat with most of you at some point and I really hope I can help anyone in need...a shoulder to cry on, a laugh to get by on, or just a simple "helllo" to get you through your day.

Blessings!
Kat

[Lovemyhusband]

My name is Michelle and my husband was diagnosed recently with N. He is really happy to finally be diagnosed, but is still looking for the right prescriptions to work out.
We have 4 children and wonder if possibly 2 of them have N as well. I already have appointments with the pediatricians to get them checked out and then referred for neuro consults.
Lately, it's been very hard to keep trying to be supportive with the N.
The last meds were awful in my view, but he says different.
How do I keep supporting him and get him to feel good again?
We've been together 19 years and sometimes I just want the person I met back then and not the N husband that came home 8 years ago from business trip that wasn't "feeling right."

Thanks for all your support you have here.
Michelle

Hi Michelle, I am glad you found us!! My husband was dx in January of this year. We are still trying to adjust his meds but its worth all of the "hassle" on my part to get my husband feeling tip top shape .

Our lives are alike is a few ways. Dh and I have been together for 19 years and I have a hard time with the N on some days. For me when I look back on the day its purely selfish on my part (not saying thats the same for you). Usually I am disappointed I didn't get to do something I would have liked since he was not able to watch the kids for me. My kids are 11 and 6. Normally if I go out at night I don't worry about him being awake since they will sleep anyway but during the day I worry about them going outside without dh's permission. Since we have a few sex offenders in our area the kids are not allowed outside without an adult.

To answer your question on how do you keep supporting him...the answer is love him unconditionally just like you always have. It will be hard on days but nothing good ever comes without some sort of effort. You can look at it another way if it was you would your dh support you unconditionally? if the answer is yes than this should be a little easier for you.

I am always willing to listen if you need to vent or just chat about what it's like being a PWON living with a PWN.

[Lovemyhusband]

Hi everyone! Nice to 'meet you all'!
My name is Katrina, but you can call me Kat. I was dx'd dec. 11, 2007 after about 10 years of seeking answers to my severely increased symptoms. I have always been a tired and sleepy person but always battled it and was able to keep it under check..for the most part. When I hit age 23 is when it got SUPER bad. I lost pretty much everything i worked so hard to built up in my life, including my home, my boyfriend of 8 years, alot of my friends, 2 really really awesome jobs and lost alot of respect from people in my life. Being told it was probably just mental or emotional problems for years increased my mental and emotional status because I just didn't feel 'crazy', but was getting 'crazy' for being told i was CRAZY!. lol
The most bitter sweet moment in my entire life was the day I got my dx. Finally I had answers, but the answers didn't fix the problem...I'm sure all of you can relate.

Hope to chat with most of you at some point and I really hope I can help anyone in need...a shoulder to cry on, a laugh to get by on, or just a simple "helllo" to get you through your day.

Blessings!
Kat

Kat it's a pleasure to have you posting with us. I am sorry to hear all of the things you have lost. I'm sure it's not easy when you lay it all out in front of you. I think N should have some sort of 12 step program like AA. Something that measures your progress. like step 1 would be all the miss dx, step 2 would be the actual dx, three the med trial. You get what I am saying...right? anyway welcome aboard!