Lovemyhusband

Calling all new users

351 posts in this topic

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. :D

Jaye

PS: Where is the sleepy emoticon?

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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. :D

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!

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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?

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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

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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.

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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

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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.

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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 :lol:

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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.

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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 :lol:

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!

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Hey there.... my name is Amy. I am a 38 year old single female PWN living in southeastern Michigan. For the first 25 years of my life, I was happy, healthy and living without sleep disorders and/or issues with sleeping or EDS. Then in September of 1995 ......I can actually tell you the exact moment that N entered my life and changed it forever. After a year of misdiagnosis from general physicians, extreme EDS and two minor fender-benders, I was finally diagnosed with N.

At 26 years of age, my life as I had known it was over.... or so I thought. Unfortunatley, all I was given after this life altering diagnosis was a pamphlet and a "Good Luck". I was devastated and feeling completely alone and hopeless. I eventually found a neurologist that listened to me and attempted to help by trying several different medications. I found Ritalin (and still do) to work the best for my EDS.

Fortunately for me, I had no other option than to get up everyday and make the best of it. I have to admit that it was definitely NOT easy most days, but I did the best I could. I attempted to exercise every day, but still managed to gain 50 lbs in the last ten years even though I consciously eat healthy choices. I attempted to have some kind of a routine schedule, but refused to let N dictate my lifestyle. I have a strong personality and have fought N all the way!! Somedays I was victorious in my attempts and then somedays.....I was NOT! :rolleyes:

Then in 2007, my sleep, or lack there of hit an all time low and I felt completely defeated. I was severely depressed, over weight, excessively exhausted, moody, stressed and completely miserable and feeling overwhelmingly hopeless. I knew I had no choice but to find a better quality of life and started researching options to aid in a good nights sleep. So, in March 2008, my neurologist put me on Xyrem and it has changed my life!! I am the person I was before N.....only better!! Let's just say that sleep is definitely NOT over rated!! It's the best sleep I've had in the last 10 years, I have lost 27 lbs, running my first 5k in October and I am happy, healthy and loving life!! :D

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Way to go, Amy! Your post made my day!! I am currently trying to climb out from the bottom of the "EDS well" by changing my lifestyle - eating well, better sleep habits, less stress, exercise.... I just started running again for the first time in three years and it feels great. I also feel a bit like my old self again! Good luck on your 5K in October - just this morning I researched 5Ks in my area in October. Too bad Michigan and Virginia are so far from each other or else we could run in the same race! :lol:

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Hello.

I'm Damian 27yrs old got diagnosed with N nearly 2yrs ago. I also suffer from the cataplexy bouts of sleep paralysis and the vivid dreams. I have had slt, ecg, eeg,mri and full sleep study, been on numurous meds, modafinol, clomipramine, haloperidol, fluoxetine, dexamphetamine and currently using the dex with fluoxetine and just started using xyrem ( sodium oxybate). I had to stop working cause of cataplexy more than the N. Had my driving licence revoked, since seen a few different specialsits. None of my meds fully control anything and I have worked my self up so many times to think maybe this next med will do the trick but to no privail.

damian

(Narco)

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Hello.

I'm Damian 27yrs old got diagnosed with N nearly 2yrs ago. I also suffer from the cataplexy bouts of sleep paralysis and the vivid dreams. I have had slt, ecg, eeg,mri and full sleep study, been on numurous meds, modafinol, clomipramine, haloperidol, fluoxetine, dexamphetamine and currently using the dex with fluoxetine and just started using xyrem ( sodium oxybate). I had to stop working cause of cataplexy more than the N. Had my driving licence revoked, since seen a few different specialsits. None of my meds fully control anything and I have worked my self up so many times to think maybe this next med will do the trick but to no privail.

damian

(Narco)

Hi Damian I'm glad you found us. Good luck on your quest for the perfect combination to help you maintain your symptoms. My dh is on the same path only older :lol:

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Hi Damian I'm glad you found us. Good luck on your quest for the perfect combination to help you maintain your symptoms. My dh is on the same path only older :lol:

Good luke to you also.

I find sometimes It's so easy to become depressed naturally due to the effects on your daily life.

I went off the rails couple of years ago they didn't know where to put me ended up in a mental ward where they didn't even know how to spell Narcolepsy let alone know what it is.So when I went into an N or a C they didn't even know how to react, when you in a sleep paralysis you can hear them all debating whether they should wake or leave you.. it was a joke..

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Good luck to you also.(sorry spelling mistake)

I find sometimes It's so easy to become depressed naturally due to the effects on your daily life.

I went off the rails couple of years ago they didn't know where to put me ended up in a mental ward where they didn't even know how to spell Narcolepsy let alone know what it is.So when I went into an N or a C they didn't even know how to react, when you in a sleep paralysis you can hear them all debating whether they should wake or leave you.. it was a joke..

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If I remember correctly spelling errors are a requirement for us on this site :unsure:

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Hello, my name is Megan, I'm from North East PA, and 24 years old. I have cataplexy and narcolepsy.

I started falling a sleep in school in seventh grade which quickly dropped me off the honor role. I didn't have cataplexy until after later, after highschool. Although everytime I think I have my timeline figured out, I have a memory of something and realize that it started at a different age than i thought.

I was diagnaozed when i was 20. I got kicked out the bar on my 21st for falling a sleep, (Provigle didn't work for me.) That was a random thought that popped in my head and made me chuckle.

My family is very supportive and we all use humor to get us through the hard times. I don't always find it funny, but i try to laugh rather than wallow. As supportive as everyone in my family is, i get sick of answering the same questions over and over. So i joined this community in hopes for piece of mind. i think my family's biggest problem is not knowing how or why this happened. Instead of talking to me to get a better understanding of how i feel and the N/C, they interrogate me because they need to blame someone or something, such as my father's exposure to agent orange (i think might be the only worthwhile conclusion to look into), or an antibiotic that millions of people have taken for decades and i'm the only one in the world that had a reaction to it, or the fly on the wall or the sandwhich i ate for lunch...

Anyway, i have to go to work, thanks for being nice, thanks for being here...

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Hello, my name is Megan, I'm from North East PA, and 24 years old. I have cataplexy and narcolepsy.

I started falling a sleep in school in seventh grade which quickly dropped me off the honor role. I didn't have cataplexy until after later, after highschool. Although everytime I think I have my timeline figured out, I have a memory of something and realize that it started at a different age than i thought.

I was diagnaozed when i was 20. I got kicked out the bar on my 21st for falling a sleep, (Provigle didn't work for me.) That was a random thought that popped in my head and made me chuckle.

My family is very supportive and we all use humor to get us through the hard times. I don't always find it funny, but i try to laugh rather than wallow. As supportive as everyone in my family is, i get sick of answering the same questions over and over. So i joined this community in hopes for piece of mind. i think my family's biggest problem is not knowing how or why this happened. Instead of talking to me to get a better understanding of how i feel and the N/C, they interrogate me because they need to blame someone or something, such as my father's exposure to agent orange (i think might be the only worthwhile conclusion to look into), or an antibiotic that millions of people have taken for decades and i'm the only one in the world that had a reaction to it, or the fly on the wall or the sandwhich i ate for lunch...

Anyway, i have to go to work, thanks for being nice, thanks for being here...

Hi Megan Welcome aboard.

You said you are off to work. What do you do for a living? I am a stay at home mom (for now) and Andre (pwn) works for the USPS.

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Hi Megan Welcome aboard.

You said you are off to work. What do you do for a living? I am a stay at home mom (for now) and Andre (pwn) works for the USPS.

i'm a purchasing agent at an army depot. Maybe one day i'll be a stay at home mom too, but i just got married in May and my husband has one semester to go. We've both assumed that we won't have kids unless we adopt or he can make enough after graduating that i could lay off the meds and start trying. Sometimes i wonder if i really do want kids or not. i'm afraid that the part of me only wants them is convinced that i can't because its such a physical, emotional, and financial challenge because of the N and C. i'm still trying to sort it out.

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i'm a purchasing agent at an army depot. Maybe one day i'll be a stay at home mom too, but i just got married in May and my husband has one semester to go. We've both assumed that we won't have kids unless we adopt or he can make enough after graduating that i could lay off the meds and start trying. Sometimes i wonder if i really do want kids or not. i'm afraid that the part of me only wants them is convinced that i can't because its such a physical, emotional, and financial challenge because of the N and C. i'm still trying to sort it out.

The decision to have kids is a difficult one even without N. I am glad we had our kids before Andre was dx. I'm not sure if it would have made a difference or not but adding one more "what if" in the mix is never good. Andre was only dx'd in January 08 but we have been looking for an answer to his symptoms for years before that. I think sometimes life will happen to you whether you are ready for it or not. Maybe and answer will present itself to you when you least expect it.

Take care

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Nice to find a place for advice. Iam 23 and was diagnosed about 6 months ago.

My story is one of misdiagnosis for the past 7-8 years. Some rough things happened in our family and the therapist thought I was withdrawn and diagnosed me with depression at 13...WRONG. I took wellbutrin for a while to no effect and then another doctor said it was ADD again that made me fall asleep in every class in high-school. He put me on Concerta which had some terrible side-effects for me (extreme aggression, paranoia, jitters...). I graduated high school with a 2.1GPA.

Once out of high-school I could structure my life to deal with how I am and did very well in college (3.96GPA). I woke up and went straight to work and stayed on my feet (as long as I am moving and engaged...I am awake) while I did my homework before class. Straight to school after that and then straight back to work. About sophomore year I started having to drive long distances on a regular basis and I begun falling asleep at the wheel routinely. Rumble strips have saved my life more times than I can count. At first I didn't say anything because I legitimately thought it was normal to fall asleep on the highway at 3PM (call it denial if you like).

About 6 months ago, however, the addiction to coffee, absurdly loud music, and driving 80 with the windows down failed on my way to work. The piece of highway I was on was brand new and they had not yet installed the rumble strips. By the time I came to the car was going sideways and heading for the embankment. Thank God nobody else was around that I could have hurt and the airbags saved my life. After that I realized that I had a problem and got very scared about running someones family off the road so I quit driving and told my mother to find me a sleep specialist (she works for a major health system in the area). The specialist immediately got me a study and, ta-da, finds out that I have narcolepsy and have probably had it for years. I am now taking Provigil, avoiding all caffiene, and paying attention to my sleep at night. I wish someone had figured it out sooner...but that's life.

Anyways, it's nice to find a group of people that deal with the same thing.

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:rolleyes:

Hi everyone, I'm Kathie. I was diagnosed in 2001 at the age of 38. I've been lurking for awhile, thought I should introduce myself. I've had EDS always, horrible dreams since I can remember.

Cataplexy happens everyday. I retired in 2001. I worked in a prison, found out about the N and pretty much pushed me out. So, now I just do what I can on a daily basis. I'm married to a wonderful man who has IH.

He is actually the one who told me when I couldn't stay awake on our dates, that I had a sleep disorder, boy was he right LOL...He's very supportive, drives me when needed, catches me on my way down to the floor, etc.

I fear now that my daughter is starting to show signs of N. She told me she needs an eye test because she can't stay awake while driving. Her eyes are messing with her, she says. HHMMMMM I wonder....

anyways, enough rambling...thanks for listening...

Hey, anyone near Galt, CA? let me know...

Kathie

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Hey there,

My name is Luis, I'm a 25 year old med student at the University of Rochester. I was diagnosed with N w/C the summer before my senior year of college. My chances for medical school were almost ruined because of my inability to stay awake and get all the studying done I needed for college. I found out about narcolepsy by taking an abnormal psychology course to pad my GPA. Before college, school was pretty easy; except for the waking up to get to school on time and the staying awake for longer than 2 hour intervals, but I did very well in high school.

I'm still trying to find the right combination of medications to let me function; there are not enough hours in the day for me to get everything done because I need to sleep so much. I did pretty badly for my first two years of medical school because I just couldn't get enough studying in.

Right now I'm on Xyrem, ritalin, and wellbutrin. I might go back to Provigil, but its very inconsistent for me. I'm also wondering when Nuvigil will come out. Has anyone heard anything about its release date? Its been over year since its been approved by the FDA.

My biggest concern is that I want to be a surgeon, but I don't know if I can survive the residency. Doing an overnight call is easier now with my medication, but the next day is so horrible that I'm a danger to myself and others.

Any other health care proffessionals with N here? Any advice, tips?

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What is this AA or something, lol.

Hi my name is Andrew and I have narcolepsy, cataplexy, depression, and all the other unpleasant sleep related nasties.

Had the problems since age 14, was really bad up to early twenties, much better during twenties, much worse past thirty.

Had many, many wrong diagnosis, seen a lot of idiot doctors, been bounced around the healthcare system like a pinball.

I finally got confirmation after two overnight sleep tests, and three Multiple Sleep Latency Tests.

My life's pretty much down the toilet these days. I just had come to terms with rejecting a place at university

due to the fact that I can't remember a damn thing and forget chapter one by the time I get to chapter four.

Andrew

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