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Hi Everyone!

I was diagnosed with N this past summer after sleeping away most of my 30's and 40's. I just thought that I was just someone who needed alot of naps and was tired from working. I first began my symptoms as a teenager with sleep paralysis and hallucinations. I thought that I was going to be abducted by aliens!! As I got older, I began the long naps 3-4 hours each day as well as the overwhelming urge to fall asleep during the day. I kept myself awake by constantly moving and performing tasks as well as excessive talking and diet coke drinking!

I finally, at the age of 49 and a medical professional myself, I sought medical help from a trusted doctor because I thought my symptoms were blood sugar related or thyroid. When all my many tests were negative, she referred me to a sleep specialist and my sleep studies confirmed my N. I have taken Provigil, Ritalin, and Zyrem and was very unhappy with the effects. I decided to let my internist manage my N as she already had several patients in her practice with N.

This is what has worked for me so far: I take Adderall XR 30mg in the am (0430) and again at 11 am, I also take Wellbutrin XL 300mg in the am, Lexapro 10mg at bedtime, I also take Klonipin 1 mg to sleep. I have done very well on this combination. I feel happy, energetic, and finally feel like a human being! I also take a small dose of Lopressor to control the tachycardia from the Adderall. The Klonipin allows me to sleep a full night without the fragmented sleep and I still have dreams going to sleep and upon wakening, but the dreams are "mild" compared to what I was experiencing before. All these meds are generic and are not too expensive with the exception of the Adderall XR. The long acting is still brand name only.

This drug regimen did take time to reach the desired effect, about 3 months, so one needs patience in finding the right drug combo. It is also important to keep the same bedtime and waking up schedule. I eat a well-balanced diet, avoid caffeine before bed, turn the TVoff, and have a dark, quiet sleep environment. I was able to change my work schedule to work less days but longer hours on my scheduled days. My co-wrokers have been very understanding and supportive and I do take a few breaks during the day and lay down. I find that this restores me.

I have had many "dark" days in my efforts to find the right drug therapy for me. It has not been easy, but I can say it has been worth the fight to feel more like a normal person. I hope my story will help some of you struggling to find the right treatment. It does takes discipline and consistency to work.

Suzanne

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Hey everyone.. i was recently diagnosed with Narcolepsy w/ cataplexy as well at the age of 23.

I am a college student studying philosophy and trying to get into PA school to get into neurology (ironic huh?)

I am also an amateur race car driver with narcolepsy! (even more ironic! lol)

It has been annoying especially since it has seemed to just progress greatly over the past year. 3 years ago i was convinced i had ghosts or spirits following me around. I hope to really find out someday what causes this and why some other unexplainable things happen to narcoleptics.. which i will get into later. I am extremely happy to find this support group and really be able to connect with people who understand what i am going through. I hope to have good discussion with you all throughout my time here!

By the way i decided to NOT take meds for it... i want to seek a more natural way of dealing with it.. ill let you know how that goes.

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Hey everyone.. i was recently diagnosed with Narcolepsy w/ cataplexy as well at the age of 23.

I am a college student studying philosophy and trying to get into PA school to get into neurology (ironic huh?)

I am also an amateur race car driver with narcolepsy! (even more ironic! lol)

It has been annoying especially since it has seemed to just progress greatly over the past year. 3 years ago i was convinced i had ghosts or spirits following me around. I hope to really find out someday what causes this and why some other unexplainable things happen to narcoleptics.. which i will get into later. I am extremely happy to find this support group and really be able to connect with people who understand what i am going through. I hope to have good discussion with you all throughout my time here!

By the way i decided to NOT take meds for it... i want to seek a more natural way of dealing with it.. ill let you know how that goes.

natural? by natural you mean just nap on a schedule? If you find anything that is natural and makes a true difference. Im sure we all want to know.

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Hi Everyone!

I was diagnosed with N this past summer after sleeping away most of my 30's and 40's. I just thought that I was just someone who needed alot of naps and was tired from working. I first began my symptoms as a teenager with sleep paralysis and hallucinations. I thought that I was going to be abducted by aliens!! As I got older, I began the long naps 3-4 hours each day as well as the overwhelming urge to fall asleep during the day. I kept myself awake by constantly moving and performing tasks as well as excessive talking and diet coke drinking!

I finally, at the age of 49 and a medical professional myself, I sought medical help from a trusted doctor because I thought my symptoms were blood sugar related or thyroid. When all my many tests were negative, she referred me to a sleep specialist and my sleep studies confirmed my N. I have taken Provigil, Ritalin, and Zyrem and was very unhappy with the effects. I decided to let my internist manage my N as she already had several patients in her practice with N.

This is what has worked for me so far: I take Adderall XR 30mg in the am (0430) and again at 11 am, I also take Wellbutrin XL 300mg in the am, Lexapro 10mg at bedtime, I also take Klonipin 1 mg to sleep. I have done very well on this combination. I feel happy, energetic, and finally feel like a human being! I also take a small dose of Lopressor to control the tachycardia from the Adderall. The Klonipin allows me to sleep a full night without the fragmented sleep and I still have dreams going to sleep and upon wakening, but the dreams are "mild" compared to what I was experiencing before. All these meds are generic and are not too expensive with the exception of the Adderall XR. The long acting is still brand name only.

This drug regimen did take time to reach the desired effect, about 3 months, so one needs patience in finding the right drug combo. It is also important to keep the same bedtime and waking up schedule. I eat a well-balanced diet, avoid caffeine before bed, turn the TVoff, and have a dark, quiet sleep environment. I was able to change my work schedule to work less days but longer hours on my scheduled days. My co-wrokers have been very understanding and supportive and I do take a few breaks during the day and lay down. I find that this restores me.

I have had many "dark" days in my efforts to find the right drug therapy for me. It has not been easy, but I can say it has been worth the fight to feel more like a normal person. I hope my story will help some of you struggling to find the right treatment. It does takes discipline and consistency to work.

Suzanne

Hi Suzanne,

Thank God we have the same name as you know its hard to remember the little things anymore...LOL.

I'm 51 now and have lost nearly everything I had due to not being diagnosed at an earlier age and even now can't get medical attention or the Adderall XR 30mg which kept me somewhat awake and focussed. I only had it for 3 months but it was a life saver. I'm hoping someone can tell me what works well for the Cataplexy part of it because the Adderall doesn't stop me from falling. Now I have to deal with something new on top of it right when I thought things couldn't get worse. After I was hit on the job by another employee and the company refused to fire him, the stress triggered what I guess is called Automatic Behavior. Since I quit I've ended up on the exit ramp of the freeway and have lost 20 minutes while in the shower and who knows what else. At present I'm unemployed, no insurance and if not for my daughter I'd be homeless. Please keep me posted as to how things work out for you med wise. I thank you for your story.

Suzanne

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natural? by natural you mean just nap on a schedule? If you find anything that is natural and makes a true difference. Im sure we all want to know.

First of all i want to point out that i mean no disrespect to anyone who takes meds, it is the best way to combat N and i think the most effective. I myself work as an EMT and i can definitely tell you they are a life saver. However, because i am curious, i am a poor college kid with crap for health insurance, i study the brain, and since i do not seem to have it as severely as other people i want to try this alternative route. I do not think there is any way to fix cataplexy by natural means but i want to see if i can curb my sleepiness and overall tiredness. When i say natural i do mean napping on a set schedule, eating certain foods, becoming extremely fit, meditation/yoga, and sound waves. When i do anything in my life medications are my last possible route. I simply do not trust pharmaceutical companies and a part of me believes that we as human beings are able to do things not yet fully realized. It is the same in reverse if you think about why we have narcolepsy and how/why does a human develop such a state (i do not think it is all bad or happening to me for bad reasons). This is just one of my experiments i want to dabble with while i can afford to time wise. If i prove to not be able to get anywhere with this then of course i will take the med route and be happy with my life. For now, i just want to document what i do and try different means. If i offended you angellus i deeply apologize but i am sure you were sincere with your question.. just covering my butt!

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I don't know what happened to my first atempt at this post but as I was saying; I've been reading a few of the posts here lately and after discovering that this site is full of both narcoleptics and bad spellers (someone somewhere on this site said it was practicaly a requierment)... I realised I've come home.

I am 32. Diagnosed with N/C about 8 yrs ago. Glad I read stuff on this site.- Thanks.

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I am also an amateur race car driver with narcolepsy! (even more ironic! lol)

The need for adrenaline used to be such a driver (haha) for me.

It has been annoying especially since it has seemed to just progress greatly over the past year.

I'm really sorry. Did you have something big stress?

3 years ago i was convinced i had ghosts or spirits following me around.

This seems to not be uncommon.

I hope to really find out someday what causes this and why some other unexplainable things happen to narcoleptics..

This seems to be a good topic.

which i will get into later.

Looking forward to it.

By the way i decided to NOT take meds for it... i want to seek a more natural way of dealing with it.. ill let you know how that goes.

Good luck and please do let us know.

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I thought that I was going to be abducted by aliens!!

You're home here.

long naps 3-4 hours each day

Before I knew that I had N, my husband and I went to a counselor. I told him that I had to take naps everyday, sometimes several times a day. He said that is okay. How long are my naps. I told him at least two hours and I thought he was going to fall on the floor. He was a real dumbass.

It is also important to keep the same bedtime and waking up schedule. I eat a well-balanced diet, avoid caffeine before bed, turn the TVoff, and have a dark, quiet sleep environment. I was able to change my work schedule to work less days but longer hours on my scheduled days.

Sleep hygiene is important.

I have had many "dark" days in my efforts to find the right drug therapy for me. It has not been easy, but I can say it has been worth the fight to feel more like a normal person. I hope my story will help some of you struggling to find the right treatment. It does takes discipline and consistency to work.

It's wonderful that you found something that works for you. Please remember that for some of us, nothing seems to be a true help. The discipline and consistency has been applied for many, many years. Sometimes I fall off the wagon, but that 's because I get too tired to follow through. That's almost too funny. Too tired to keep from being too tired? Ah, well, at the time I thought it was good. Anyway. It's late and I'm obviously not a shining example of a person exemplifies good sleep hygiene rituals. Does that make sense. Yeah, I'm tired. time for bed. I'm not being sarcastic with you. It truly is great that you could find a med and sleep routine that works for you. It's just that I need to go to bed. When I get this tired I start on what I call sleep drunks. At least I recognize it this time.

Good nith tho all and to all a good night.

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Abducted by aliens! Love that!

I've been there. When I was a kid it was The Hamburglar; he just wouldn't leave me alone in my crib. I mean really, McD's thought THAT character was comforting for kids? Really?

Anyway, since then it's been faceless folks, demons, intruders, etc. lions and tigers and bears..... I'm an artist and I've made alot of work regarding these faceless folks, but I don't need to explain them to you all. I know you get it. When I first met sleep doc he referenced my description of "feeling as though there was someone in my room standing above me at night." He said: tell me about this presence in your room, for which I threw a fit, (I was a little sensitive b/c so many docs over 15 years had said I was nuts and "a woman")--so a fit, stating that I never said I had ghosts or a haunted house and that I didn't appreciate the implication. He immediately calmed me by telling me that he believed me, that he didn't think I was crazy and that it is a symptom of a real disorder; he had heard of this presence hundreds of time before. Cut to me blinking incessantly in his face with disbelief.

However, one of my best moments came one summer night when I was 100% sure that I was being abducted by aliens; they were there and I was paralzyed with fear and so keenly aware of what was going on. So what do I do? Well, the bedroom window was wide open so.... I start to scream for help...but not help, help...an odd kind of help request.

I believe my exact words: People next door, call the police! People next door, call the police!

Rinse and repeat. Now c'mon, that's good stuff!

I mean, I suppose you could argue that since I was paralyzed I didn't in fact scream anything at all, but I surely felt as though I was screaming bloody murder and in the end, does it really matter? It's still good stuff!

It's so very nice to have a forum where we can all exchange stories, grievances and support one another. I'm so glad I decided to finally post.

be well,

jenji

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If you can step out of the seriousness of what we experience, you have to admit that it can be hilarious. It reminds me of author Robert McCammon's writing. Strange, hilarious, and probably spooky for the character that goes through it.

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Oops, I already posted, but just found this thread. :P

I'm Eve, 36, and was diagnosed with N around 8 years ago. Long story, but I also have a minor heart condition, so for a while I was taking a beta blocker and dexamphetamine....which is kinda crazy, so I stupidly (hindsight is a wonderful thing) decided to go off both of them. At the time, I was taking both 'as needed'. Sigh... Now I'm battling with new docs to get back on the dex. The problem is, I've had a lot of personal stuff going on in the last couple of years so they're ASSuming I'm just depressed. Anyway...

I realise now my symptoms started in high school. I'd be awake all damn night and sleep all through my biology classes. I ended up taking off a lot of my senior year. The doc called it stress.

I can't even remember why my GP originally sent me to a sleep specialist, but here I am now.

That's the short version.

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Hello I'm Crystal and I was diagnosed March 6, 2009. Only one day before my 23rd birthday, whoo! Great birthday present, I know. I've been trying for a few years to get people, doctors, ect to listen to me, but no one seemed to really hear me. I even thought at first that I was just depressed. I didn't even seek help for my depression for a long time, thinkin I could fight it all myself.

Eventually I found help for the depression, was then told I am bi polar, but I refused to take medicine for that. Finally I said, you know what? Maybe I am bipolar. This up and down tired untired happy unhappy stuff is not normal, which I knew all along. I started medicine for that, and a week later did my sleep study! So glad I finally know what is wrong with me, that I am not just lazy or crazy. It has been a relief, but also I know that new storms are rolling in.

It's funny because I had been joking that I must have narcolepsy, all the while thinking the idea was ridiculous. Pretty crazy, and I'm learning much about the things I've been going through and how they are related to this condition.

Thanks for going through this with me guys!

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Hello I'm Crystal and I was diagnosed March 6, 2009. Only one day before my 23rd birthday, whoo! Great birthday present, I know. I've been trying for a few years to get people, doctors, ect to listen to me, but no one seemed to really hear me. I even thought at first that I was just depressed. I didn't even seek help for my depression for a long time, thinkin I could fight it all myself.

Eventually I found help for the depression, was then told I am bi polar, but I refused to take medicine for that. Finally I said, you know what? Maybe I am bipolar. This up and down tired untired happy unhappy stuff is not normal, which I knew all along. I started medicine for that, and a week later did my sleep study! So glad I finally know what is wrong with me, that I am not just lazy or crazy. It has been a relief, but also I know that new storms are rolling in.

It's funny because I had been joking that I must have narcolepsy, all the while thinking the idea was ridiculous. Pretty crazy, and I'm learning much about the things I've been going through and how they are related to this condition.

Thanks for going through this with me guys!

I am going to be completely honest with you. At first there is the relief of finally knowing what is wrong.... but definitely be prepared for the roller coaster ahead. Having Narcolepsy is extremely frustrating. The doctors, the Meds, the New limitations you may have found or be wondering about. It is no surprise to me you were Dx'ed with Bipolar many of us were. But We will be here with you as you go through all of this. Dont ever be afraid or worried about bringing up a topic or responding to one. Alot of us are Blatently honest about alot of *ahem... Taboo subjects. But if we were not here to support each other, we would never really know that we are not alone.

And Neither are you.

We are glad to have you with us!

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I've posted a bunch, but never introduced myself here. I'm Erinn. I'm still going through the hullabaloo of finding a GOOD doctor and getting as many answers as possible. I've been hanging around since November. I just turned 24 in January and I'm in my first year of university.

Crystal, I also had the "Narcolepsy" jokes. My boyfriend swore up and down that I was and my response was always "I am not Narcoleptic!" Now I'm gonna be reminded of this anytime I try to tell him he's wrong about something. :P

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Hello everyone :) I noticed we have lots of new users but I didn't get a chance to meet you all.

If you have a moment introduce yourself. I'll go first.

My name is Clara, I am a PWON married to a wonderful PWN. Andre (finally) was dx'd in January 2008. It was about time, someone besides the two of us, noticed it wasn't depression. We have two wonderful children and have been together for an amazing 18 years.

OK now its your turn. :) I'm all ears/eyes

Hi I am Genevieve, and I wish I could write more, but I just can't yet. I've never learned to type and I am very tired when I try to express myself. I'm having a lot of problems with my narcolepsy and cataplexy. Xyrem is helping, but my job is killing me, and if I didn't have it I'd loose all my insurance and no more xyrem. My main problem is cataplexy. As I told my sleep doc, I could be sleepy all day and live with it but the episodes of cataplexy are so intense that it's major suffering. God, I sound so negative. Sorry!

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Hi I am Genevieve, and I wish I could write more, but I just can't yet. I've never learned to type and I am very tired when I try to express myself. I'm having a lot of problems with my narcolepsy and cataplexy. Xyrem is helping, but my job is killing me, and if I didn't have it I'd loose all my insurance and no more xyrem. My main problem is cataplexy. As I told my sleep doc, I could be sleepy all day and live with it but the episodes of cataplexy are so intense that it's major suffering. God, I sound so negative. Sorry!

Genevieve, you do NOT sound negative. You sound like a PWN trying to figure out how to live with this insane condition. Another way to say it would be, "you sound normal." How cool is that?!? I just posted in "Work and the Bosses," which I believe is also yours. You definitely have every right to ask for accommodations. It is not like you went out and found a way to get narcolepsy with cataplexy. The situation is out of your hands. Asking for the accommodations is wise. Hopefully, when you are not exhausting yourself at work, you can begin finding ways to handle your cataplexy. The most important thing is that you put yourself first. One of the great blessings for me is that narcolepsy finally gave me no excuses for avoiding my own well-being. I hope you continue to post. This forum is one of the best things in my life!

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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

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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? :P ). 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 :angry: 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.

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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.

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Sorry for the deluge of text... Sometimes you just have to rant a little :angry: 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.

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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...

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Welcome! Sorry about the registration trouble too.

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

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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 :D

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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.

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

Thank you..

Nice to meet you 2

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