214 replies to this topic

[jlossrn]

Wow, A lot of new members, I'm sitting here reading your stories and I have tears running down my cheeks. As much as I would hate to have someone experience these symptoms. It is nice that others do recognize, understand, and sympathize. Most of you are very fortunate that your families, husbands, wives have tried to understand and stand or stood by you. good for you..... Thats all. I just wanted to say Hi to the new member.

Jeff

[music_man]

Hey everyone! I finally managed to get my NN account validated (somehow...) after issues with registration (I never got a validation email... that I can remember).

My name is Carter and I'm a 23 yo from East Texas.

I was diagnosed recently (March) with N w/o C. My referring doc didn't ask me to see the neurologist before scheduling a PSG (which would've resulted in an MSLT the following day), so in the end, I took 2 PSGs in a month's time and an MSLT. Fell asleep in all 5 nap times during the MSLT (averaged 5 minutes to fall asleep... who knew? I always thought I just fell asleep easier than everyone else) with REM sleep happening almost immediately in 3 of them and the doc says I looked like I was heading that way in the last one.

Anyways, I completely understand what I've been reading on these forums now after only being diagnosed for 2 months. It's the pits. My friends are all surprised (and yes, I got the Rat Race AND Deuce Bigelow questions), even though one is a RN who suggested I get checked for anemia and hypothyroidism (yes, thank you, I already had, any more brilliant suggestions? or should I ask the doctor? ). My family is a hodge-podge of reactions. My mother is probably the best (even though she is a bother on other topics), she doesn't even mention anything about it or try to make a big deal out of it (or even make a small deal out of it). My brothers (4 of them, all younger, yes, I'm doubly "lucky") all poke fun of it and say things like "I might have that too, I'm sooo tired by the end of the day..." thanks, I'm like that all day. My dad is the type who (being a physical therapist, which might have something to do with it) eschews doctors and medicine, proudly claiming to have avoided doctors and dentists for the past 2 decades. He has been constantly trying to look up information and talk to his doctor friends and confirm his beliefs that a 23 year old shouldn't have to be taking medication. "You're so young. Are you going to take meds for the rest of your life?" Yes, I probably will have to. Do diabetics have a condition they have to carefully manage? Yes, thank you. I've given up telling friends, other family, and (most especially) co-workers and the boss about the situation. I'm tired of the responses that tell me they don't think it is a valid disease or worth paying attention to ("Can't you just get an extra couple hours of sleep every night?" I already get 9 or more and naps during the day...).

Since a silver bullet cure is not likely in the next decade, I'm stuck here looking at the prospects of finishing my last semester at college (finally starting to pull up a dismal GPA in hopes of a decent exit GPA) and grad school. I'm truly worried about doing any more schooling or even a "real" world job. I've already had enough issues near the end of high school and through most of my college career and I only feel like I am becoming more tired and distracted and incapable of focusing and completing tasks. It's nice to have found a nice community like NN because you all seem so open armed and caring for each other.

Sorry for the deluge of text... Sometimes you just have to rant a little Time for a nap. Anyways, thanks for reading this, and if you didn't read all of it, I don't blame you, I don't feel like reading a lot most days.

[sleepless sleeper]

and if you didn't read all of it, I don't blame you, I don't feel like reading a lot most days.

this i did read. but i usually can't read most long posts. I like to read what people post, though, I just find it incredibly difficult to stay focused.

I'm sorry about some of your family. A lot of us on here have similar stories. I'm sorry that it was your dad that says that stuff because I hate it when people do that. Let him know that this is a neurodegenerative disease in at least some cases. Maybe all. I don't know. But if you have orexin issues, then it is. There is nothing that you can do about it.

At least you found us. You have a new home away from home. Vent here. Show emotion here. Ask questions here. We're your new family. You're our new bro. Welcome home.

[Lais02]

Sorry for the deluge of text... Sometimes you just have to rant a little Time for a nap. Anyways, thanks for reading this, and if you didn't read all of it, I don't blame you, I don't feel like reading a lot most days.

No need to apologize here! Almost all of us have vented at some point... that's what's so great about NN. We all get it

Welcome! Sorry about the registration trouble too.

[BaRb79]

Hey
I'm Barb.. Dx'd in January 2009. I have N, C and SP. I'm a mother of 4 and have a wonderful supportive husband.
I work and go to school full time. I live my life and N is just part of what makes me, ME. I don't let it get me down.
I'm medicated with Xyrem Effexior and Provigil. Other than that I'm very active and healthy.
LOL I'm hyper this morning actually felt really rested this moring sorry...LOL
Nice to meet everyone...

[music_man]

Welcome! Sorry about the registration trouble too.

It's okay I'm here now. Thanks for the warm welcomes.

[music_man]

this i did read. but i usually can't read most long posts. I like to read what people post, though, I just find it incredibly difficult to stay focused.

Thanks. From reading your posts, this means a lot to me, many sincere thanks! Such a great feeling to finally find a group of people sharing similar experiences and being so welcoming

[Lais02]

Hey
I'm Barb.. Dx'd in January 2009. I have N, C and SP. I'm a mother of 4 and have a wonderful supportive husband.
I work and go to school full time. I live my life and N is just part of what makes me, ME. I don't let it get me down.
I'm medicated with Xyrem Effexior and Provigil. Other than that I'm very active and healthy.
LOL I'm hyper this morning actually felt really rested this moring sorry...LOL
Nice to meet everyone...

Barb welcome! That's wonderful that you're feeling great this morning. Nice to meet you.

[BaRb79]

Barb welcome! That's wonderful that you're feeling great this morning. Nice to meet you.

Thank you..
Nice to meet you 2

[WillWork4Latte]

Howdy, group. My name is JD.....and I like pina coladas and getting caught in the rain. Sorry- nervous energy, I guess- just wanted to break the ice!
Anywho, as I was saying, I'm JD and I was diagnosed with N - and its trusty little sidekick, C - just yesterday (finally!) at the tender young age of thirtysomething. I thought it was just another dream at first...until I had to write the check for my specialist co-pay. And I'm sure it will seem even a little more real when I have to write the next check for my new meds a little later today.
I have been browsing through the discussions here for the last few weeks in an attempt to edumacate myself about sleep studies, diagnosis, and several other fun little details associated with N. Until I found this site, I kind of felt like I was on my own little deserted island, equipped with only a boat with a hole in the bottom and a broken oar bolted to one side. In fact, now that I mention it, navigating in circles on a sinking ship while just trying to chart a course back to some sense of normalcy serves as a pretty accurate model of my personal and professional life during the past year or two or three or four...like many of you, I seem to have taken the scenic route.
So...this whole N thing is still very new to me (yet so very old, if you know what I mean), but I have already learned a lot from the experiences that several people have shared here-- much appreciated! And I look forward to learning a lot more from the site and group discussions.
Oops!-- just took a quick peek at the time and realized that I have been drifting along on autopilot for several minutes now. Time to scroll back a few sentences, edit/revise, and move along. Take care, all!

[BaRb79]

Howdy, group. My name is JD.....and I like pina coladas and getting caught in the rain. Sorry- nervous energy, I guess- just wanted to break the ice!
Anywho, as I was saying, I'm JD and I was diagnosed with N - and its trusty little sidekick, C - just yesterday (finally!) at the tender young age of thirtysomething. I thought it was just another dream at first...until I had to write the check for my specialist co-pay. And I'm sure it will seem even a little more real when I have to write the next check for my new meds a little later today.
I have been browsing through the discussions here for the last few weeks in an attempt to edumacate myself about sleep studies, diagnosis, and several other fun little details associated with N. Until I found this site, I kind of felt like I was on my own little deserted island, equipped with only a boat with a hole in the bottom and a broken oar bolted to one side. In fact, now that I mention it, navigating in circles on a sinking ship while just trying to chart a course back to some sense of normalcy serves as a pretty accurate model of my personal and professional life during the past year or two or three or four...like many of you, I seem to have taken the scenic route.
So...this whole N thing is still very new to me (yet so very old, if you know what I mean), but I have already learned a lot from the experiences that several people have shared here-- much appreciated! And I look forward to learning a lot more from the site and group discussions.
Oops!-- just took a quick peek at the time and realized that I have been drifting along on autopilot for several minutes now. Time to scroll back a few sentences, edit/revise, and move along. Take care, all!

Welcome!!
Don't worry your in good company alot of us are new at this...
We have good days bad days and really bad days.. Feel free to share your ups and downs..Whatever you want..

later

[jenji]

Hiya Barb,
hiya musicman
and welcome, welcome, welcome!

jenji

[BaRb79]

Hiya Barb,
hiya musicman
and welcome, welcome, welcome!

jenji

ty ty ty

[WillWork4Latte]

Welcome!!
Don't worry your in good company alot of us are new at this...
We have good days bad days and really bad days.. Feel free to share your ups and downs..Whatever you want..

later

Thanks for the welcome, Barb. It's refreshing and empowering to finally be among people in similar situations, as well as those who have "been there and done that".

[Sleepy in Seattle]

Hello I am new to this site and new to Narcolepsy. I was just diagnosed last week with sleep apnea and narcolepsy. This has only been the last 4-5 years for me where I have been so exhausted and tired all the time. I used to go all day long. Now I am lucky if I can make myself do the laundry. I am on Ritalin now 3 x daily. That doesn't seem to help much with a cpap mask at night. I would sure welcome any suggestions to help give me some more ambition. This is becoming an issue with my husband as we have both always been active and he is still active. He just had a year long bout with severe crohns and has lost almost all his colon, had a temporary ostomy, multiple surgeries lost 50 pounds etc.. He is recovering well and can't understand why I can't push myself harder to do all that I used to and keep the house up better (we have a 4800 sq ft house) and I am struggling. I work at my own 2 businesses and I am just worn out. Looking forward to having some refuge here. Thank you all.

[WillWork4Latte]

Hello I am new to this site and new to Narcolepsy. I was just diagnosed last week with sleep apnea and narcolepsy. This has only been the last 4-5 years for me where I have been so exhausted and tired all the time. I used to go all day long. Now I am lucky if I can make myself do the laundry. I am on Ritalin now 3 x daily. That doesn't seem to help much with a cpap mask at night. I would sure welcome any suggestions to help give me some more ambition. This is becoming an issue with my husband as we have both always been active and he is still active. He just had a year long bout with severe crohns and has lost almost all his colon, had a temporary ostomy, multiple surgeries lost 50 pounds etc.. He is recovering well and can't understand why I can't push myself harder to do all that I used to and keep the house up better (we have a 4800 sq ft house) and I am struggling. I work at my own 2 businesses and I am just worn out. Looking forward to having some refuge here. Thank you all.

Hello -- welcome to the refuge! I know what it's like to feel tired and struggle most of the time, and I'm sure most here (if not all) do, also. I have learned a lot of valuable and helpful information in the short amount of time since I discovered this forum -- I'm sure you'll find it useful, too. Again, welcome!

[Jmf10830]

Hello.

Im Jonna. Ive been diagnosed with N for about 9 months now, but Ive had symptoms for about 4 years. I never thought anything was REALLY wrong, I just assumed I was bad at sleeping. I actually have it easy compared to alot of poeple with this network. Ive been on Nuvigil for about a month and Xyrem for about 4 days... I think its too soon to really tell if its going to make me feel better, but Im ok with waiting. Im about to move to another city for college and thats added alot of stress on top of trying to figure all this medication out. Not to mention Im going to be away from my doctor and family for the first time. Hopefully being a member here will help with questions and so forth Im excited to talk to other people about this, anyone I try and talk either has no clue what Im talking about.. or they dont really believe me.

[psocoptera]

Hi
I don't have a dx yet; I am waiting for my MSLT (2 months with no meds at all!), but the sleep doctor said she was pretty sure. She might have told me that so I wouldn't cry when she told me I couldn't take provigil for two months while my organization is downsizing...

I really appreciate your posts. I can read about cataplexy in medical journals until I see double, but reading about what it actually feels like for people was really useful. I forgot what else I was going to say, but I will be around...

[estilrose]

Hi, my name's Alisa. I was recently diagnosed, had my MSLT June 2. All my life I've fallen asleep in the car, whether driving or not. I've fallen asleep in class easily, and in my professional life I've fallen asleep doing mundane tasks at my desk and even while taking a bathroom break! All these were funny, co-workers would laugh that I was napping in the bathroom. Of course, family members have just said "she's lazy". I accepted that. You shouldn't get to 40 years old without realizing and accepting your faults.

This past year my job duties changed and I was driving 2-3 hours a day once a week, then 2 full work days one week a month. When I'd come back with anectdotes about falling asleep behind the wheel the coworkers freaked out. After more than a few close calls and finally coming to the realization that it's dangerous not funny, I had my doc refer me to a neurologist.

My case is mild compared to some I've read here but it is great to know there is a reason. While reading more here, I'm beginning to wonder about other contributing factors. I was diagnosed with CMV about 20 years ago, and have noticed it's worse since I've become a vegetarian and eat mostly pastas. I'm taking Nuvigil now and it seems to be working so far, now I need to investigate more about gluten-free diets and other autoimmune diseases.

Glad to have found this place. It's full of great information!

[tooyoung?]

Hello, i am too young... and in the process of trying to change that. haha. Anywho, I am a PWN. I was diagnosed over a year ago and just started meds about two months ago. I first started showing symptoms at age 16. I was also diagnosed with tourettes syndrom at age 9. recently it has been crazy, because my tourettes keeps triggering my cataplexy when i am in public. i really need to quit getting so stressed when my tourettes goes off. haha. but besides all of that, i am a mother of two, one boy and one girl. they are my life and air. My husband is very loving but unfortunately not home very often due to the downfalls of being a soldier. He tries to understand my condition, and we are working on that understanding everyday. i love him dearly for putting up with me. I am so glad to have found this sight and can now talk to people with similar lives. I look forward to meeting you all!