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Is This The Way It Has To Be?


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#1 amazingracie28

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Posted 29 November 2008 - 02:50 PM

I'm not sure if I'm posting this in the right place or not...sorry if I'm not.

I'm pretty frustrated right now. I realise that I've just started medication for N. a few weeks ago but its really not doing much to help the whole quality of life issue. I can feel it trying to do something-faster heartbeat, little faster breathing-but I'm still tired through it. I slept almost 12 hrs last night and am still falling asleep for naps on the couch. I know what you're thinking, "you have N. for crying out loud-that's what happens!". But before I was dx'd-I was tired and still pushed through and got things done even though it was horrible. Is that what you have to do when you have N.? Just keep pushing through it? Even with medication? Does it get any better? My husband tries to be supportive, but I don't think he really gets it. I told him yesterday that I could use a nap and he came back at me with, "didn't you get a nap yesterday? I didn't get one yesterday or today!". I just looked at him hoping the look on my face would make him realize what he'd just said. I don't think that happened. I think he's just gotten so used to me getting everything done that maybe he thinks I'm milking it now-which I swear I'm not at all. I'm so frustrated I've just been breaking into tears when nobody is looking-don't think I'm depressed but I don't recognize any of my life as I used to know it...and I LIKED my life! I used to run a couple miles every day. Now just the thought of running exhausts me. I have gained 30lbs in the last 4 months as a result and that has really made things worse for me. Is it better to be exhausted and make yourself do some things (run for me)? I'm finding that I don't trust my own judgement anymore. Am I just being lazy? Do I need to just suck it up? A usual day for me is getting up @ 5:30, getting my twins up and ready to go to school and all of us out the door on time, work, get the kids, make dinner and get everyone fed before my husband gets home at around 6:30. By then I'm so wiped out all I want to do is collapse. Its frustrating too because I have so much to try to remember for the kids' school stuff and even trying to figure out what to make every night for dinner sucks because my concentration is so shot. I've turned into a huge space cadet. I"m also finding myself eating more-I've read that tends to happen when you're tired but I"m not sure its not some sort of emotional comfort thing, and I've never been an emotional eater. I don't want to complain to my husband because he's tired in his own rite-he drives 1-1/2 hrs one way to his job to support all of us (he makes twice what I do). Also, he's always been extremely supportive when it comes to my Lupus so by him making a comment like he did almost makes me think that he thinks I'm exaggerating/using this as some sort of excuse or crutch. I swear I"m not at all! (I'm always on the defensive about it it seems).

If I'm going to feel so crappy all the time despite the meds-isn't it just better to push through and get some things done than to feel crappy and anxious because nothing is getting done? I'm having such a terrible time finding a balance or a compass. I feel like I don't know which way is up. I've never doubted myself or my abilities and now that's all I do. I'm hoping someone else has some insight into this. I just feel so incredibly alone and confused sad.gif

#2 dogdreams

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Posted 29 November 2008 - 04:15 PM

Oh you totally are in the right place! I've been there trust me. I can completely identify with what you're going through.

What medication are you on? I tried Cylert first and not only did that make me totally dopey like I was high on street drugs, but it put me right to sleep every time. Then I tried Ritalin but it only worked for 30 minutes at a time. I found once I controlled my Cataplexy with Vivactil, the sleepiness wasn't quite as bad, but I did get some success with Provigil. Except that if I missed one dose, it would take a week of taking it for it to work again and I got headaches. What a pain. Meds take time to figure out what works for you, if anything. Usually people find the right dose of the right meds, but its not ever going to eliminate the fatigue. But it can help you get to the point where you can function and "push through" your day again.

I'm currently med free. I found that certain foods were making my symptoms horrible so I just eat a severely modified diet to control my N. That doesn't mean it works for everyone, but there are other avenues to explore. The fat lady hasn't sung yet! Don't give up hope.

[quote] But before I was dx'd-I was tired and still pushed through and got things done even though it was horrible. Is that what you have to do when you have N.? Just keep pushing through it? Even with medication? [quote]

Yes.

[quote]Does it get any better? [quote]

Yes it can. It certainly did for me. Everyone's different. Some people get better and better, some people get worse over time, and some people do both on a cyclical basis. Only time will tell for you. Can I ask how long you've had N? I found that the first couple of years were the absolute pits for me, but after the initial 'degenerative' period, things got better.


[quote] ...he came back at me with, "didn't you get a nap yesterday? I didn't get one yesterday or today!". [quote]

Geez, resentful much? I've totally been there.


[quote]...I don't recognize any of my life as I used to know it...and I LIKED my life! I used to run a couple miles every day. [quote]

Been there too! It has been shown that exercise can improve your symptoms. It might take a couple of weeks but it does help. For me I find that for the first 2 weeks I get sleep attacks right after exercising, but if I keep going I feel more energetic once that initial period has passed. And running was always my favorite because it was my meditative alone-time. Maybe if you go running again it might help you focus your mind a bit, too. But I know how hard it can be to get up and get going! It's not like I'm the paragon of fitness myself! lol


And heck no you're not being lazy. You're busy as heck! I'm a mom, too. I can barely keep up with my one 3 yr old. If I had to get up that early and do all that in a day I'd be wiped too! Any normal person would. Then add on top of that the fact that your brain just can't handle the load without a few naps and some powerful medication and it sounds pretty daunting!

Try making lists for yourself. If you can, post them where you'll need them, like in the twins' room, in the kitchen, etc. It works for me. If you find a lucid moment, make lists of what you have to remember and plan out the week's dinners in advance. Then you don't have to think so much. Just read the list. Memory problems are big with this crowd, believe me. I couldn't get by without my lists! I'd probably go mad.


(snip) I"m also finding myself eating more-I've read that tends to happen when you're tired but I"m not sure its not some sort of emotional comfort thing, and I've never been an emotional eater. (snip)

Narcolepsy and appetite have a link, but it isn't fully understood what it is yet, I don't think. Hypocretin (Orexin) was discovered by 2 groups: 1 studying sleep and 1 studying appetite. Don't beat yourself up, but that might be a good long-term goal to work on. I don't want you driving yourself crazy with food right now if you haven't adjusted to living with N yet. I know how hard a different diet can be to get used to!!

(snip) I don't want to complain to my husband because he's tired in his own rite (snip)

Try talking to him instead. Use "I" statements and tell him what you're struggling with, what you feel, and what you fear he thinks about it all. Tell him you know he works hard and is tired too and that you appreciate his hard work. Maybe he won't be so resentful. Who knows? Don't say anything that could sound accusatory. I don't know what kind of relationship you two have, but that's my advice anyway. It may be that he's also struggling with the adjustment. If you openly discuss it, maybe you guys can find some common ground to work from. Ask him what he thinks of it all and ask him to be honest. Whatever he says, at least then you'll know and you won't be speculating all the time. I know I tend to think things are worse than they are, so that's why I suggest it. But I could be giving terrible advice. I don't know.

(snip) If I'm going to feel so crappy all the time despite the meds-isn't it just better to push through and get some things done than to feel crappy and anxious because nothing is getting done? I'm having such a terrible time finding a balance or a compass. I feel like I don't know which way is up. I've never doubted myself or my abilities and now that's all I do. I'm hoping someone else has some insight into this. I just feel so incredibly alone and confused sad.gif
(snip)

Oh I've been there too! I know exactly what you mean. It sounds like maybe you need to talk to your doctor about exploring other medications to find what works for you. I'm not sure what to tell you about not getting things done...that's my conundrum all the time. But I do always feel better when I push through and clean something...I can relax a little more knowing that I accomplished something, even though I wish I had accomplished everything.

I hope you feel better after reading some of our responses here. You sound like just about every PWN I've ever met! What you're going through is completely normal and the confusion and chaos can pass as you learn to cope and figure out what works for you. Living with N is not easy. Hang in there!! biggrin.gif

#3 amazingracie28

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Posted 29 November 2008 - 07:17 PM

[quote name='dogdreams' date='Nov 29 2008, 04:15 PM' post='6955']
Oh you totally are in the right place! I've been there trust me. I can completely identify with what you're going through.

What medication are you on? I tried Cylert first and not only did that make me totally dopey like I was high on street drugs, but it put me right to sleep every time. Then I tried Ritalin but it only worked for 30 minutes at a time. I found once I controlled my Cataplexy with Vivactil, the sleepiness wasn't quite as bad, but I did get some success with Provigil. Except that if I missed one dose, it would take a week of taking it for it to work again and I got headaches. What a pain. Meds take time to figure out what works for you, if anything. Usually people find the right dose of the right meds, but its not ever going to eliminate the fatigue. But it can help you get to the point where you can function and "push through" your day again.

I'm currently med free. I found that certain foods were making my symptoms horrible so I just eat a severely modified diet to control my N. That doesn't mean it works for everyone, but there are other avenues to explore. The fat lady hasn't sung yet! Don't give up hope.

[quote] But before I was dx'd-I was tired and still pushed through and got things done even though it was horrible. Is that what you have to do when you have N.? Just keep pushing through it? Even with medication? [quote]

Yes.

[quote]Does it get any better? [quote]

Yes it can. It certainly did for me. Everyone's different. Some people get better and better, some people get worse over time, and some people do both on a cyclical basis. Only time will tell for you. Can I ask how long you've had N? I found that the first couple of years were the absolute pits for me, but after the initial 'degenerative' period, things got better.


[quote] ...he came back at me with, "didn't you get a nap yesterday? I didn't get one yesterday or today!". [quote]

Geez, resentful much? I've totally been there.


[quote]...I don't recognize any of my life as I used to know it...and I LIKED my life! I used to run a couple miles every day. [quote]

Been there too! It has been shown that exercise can improve your symptoms. It might take a couple of weeks but it does help. For me I find that for the first 2 weeks I get sleep attacks right after exercising, but if I keep going I feel more energetic once that initial period has passed. And running was always my favorite because it was my meditative alone-time. Maybe if you go running again it might help you focus your mind a bit, too. But I know how hard it can be to get up and get going! It's not like I'm the paragon of fitness myself! lol


And heck no you're not being lazy. You're busy as heck! I'm a mom, too. I can barely keep up with my one 3 yr old. If I had to get up that early and do all that in a day I'd be wiped too! Any normal person would. Then add on top of that the fact that your brain just can't handle the load without a few naps and some powerful medication and it sounds pretty daunting!

Try making lists for yourself. If you can, post them where you'll need them, like in the twins' room, in the kitchen, etc. It works for me. If you find a lucid moment, make lists of what you have to remember and plan out the week's dinners in advance. Then you don't have to think so much. Just read the list. Memory problems are big with this crowd, believe me. I couldn't get by without my lists! I'd probably go mad.


(snip) I"m also finding myself eating more-I've read that tends to happen when you're tired but I"m not sure its not some sort of emotional comfort thing, and I've never been an emotional eater. (snip)

Narcolepsy and appetite have a link, but it isn't fully understood what it is yet, I don't think. Hypocretin (Orexin) was discovered by 2 groups: 1 studying sleep and 1 studying appetite. Don't beat yourself up, but that might be a good long-term goal to work on. I don't want you driving yourself crazy with food right now if you haven't adjusted to living with N yet. I know how hard a different diet can be to get used to!!

(snip) I don't want to complain to my husband because he's tired in his own rite (snip)

Try talking to him instead. Use "I" statements and tell him what you're struggling with, what you feel, and what you fear he thinks about it all. Tell him you know he works hard and is tired too and that you appreciate his hard work. Maybe he won't be so resentful. Who knows? Don't say anything that could sound accusatory. I don't know what kind of relationship you two have, but that's my advice anyway. It may be that he's also struggling with the adjustment. If you openly discuss it, maybe you guys can find some common ground to work from. Ask him what he thinks of it all and ask him to be honest. Whatever he says, at least then you'll know and you won't be speculating all the time. I know I tend to think things are worse than they are, so that's why I suggest it. But I could be giving terrible advice. I don't know.

(snip) If I'm going to feel so crappy all the time despite the meds-isn't it just better to push through and get some things done than to feel crappy and anxious because nothing is getting done? I'm having such a terrible time finding a balance or a compass. I feel like I don't know which way is up. I've never doubted myself or my abilities and now that's all I do. I'm hoping someone else has some insight into this. I just feel so incredibly alone and confused sad.gif
(snip)

Oh I've been there too! I know exactly what you mean. It sounds like maybe you need to talk to your doctor about exploring other medications to find what works for you. I'm not sure what to tell you about not getting things done...that's my conundrum all the time. But I do always feel better when I push through and clean something...I can relax a little more knowing that I accomplished something, even though I wish I had accomplished everything.

I hope you feel better after reading some of our responses here. You sound like just about every PWN I've ever met! What you're going through is completely normal and the confusion and chaos can pass as you learn to cope and figure out what works for you. Living with N is not easy. Hang in there!! biggrin.gif



That makes me feel better actually. Maybe its just is going to take some time.


Right now I've been taking Adderall. Sometimes it works and sometimes it doesn't. I tried Provigil and it did absolutely nothing for me. I'm honestly not sure how long I've actually had N.-I've always been really tired but its gotten worse over the last year. I've also just started having some cateplexy in the last year-Nothing major, my knees just feel like they're going to fall out from under me but I've never actually fallen. I've always had a pretty crazy schedule and with the Lupus I just always thought it was normal to be as tired as I am. I started taking it more seriously when I started to doze at red lights even after a full night's sleep. Had the MSLT about 3 weeks ago and that's when I was actually diagnosed. My doctor was running an hour late the day of my appt so basically I got to see him long enough for him to say, "hey, you have N.-here's some amphetamines, go ahead and play around with them". I was not impressed. Tried asking some questions and he kept telling me we'd talk more at my next appt. Since then I've been reading everything I can find.

As far as my hubby goes-I don't want to paint him in a bad light or anything. He's great and has always been really supportive. He's really is wonderful. He's always been very receptive to things so when he said what he did I took it that he just must not get it-otherwise he would know that I need naps. I didn't say anything at the time b/c its really hard for me to admit to myself that I may need to slow down and saying that out loud is really scary to me....makes it very real-you know? Also I did try to email me an article about it and I don't think he read it. He told me it had been erased from his computer but he never asked me to resend it or anything. I didn't want him to feel like I was trying to shove it down his throat so I didn't bring it up again. I feel like such a burden on him though he never says anything to that effect.

I'm definitely going to try to make lists when I have a moment where I'm using my whole brain. Thanks for the great suggestions. I don't mean to sound whiney, I'm just very frustrated. Overwhelmed. Its nice to know that there are others who have been there or are there now. Helps me feel less alone.

What kind of foods do you find trigger your N.? The modified diet works pretty well for you? What about caffeine and that sort of thing-do you try to avoid that? How long have you had N.? I know this sounds really choppy but I swear my brain doesn't walk in a straight line anymore.

#4 dogdreams

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Posted 29 November 2008 - 07:40 PM

You don't sound whiny. No one here is going to think you are whiny or lazy. Trust me.

I've had N for 10 years. I have more cataplexy than sleepiness, and I get sleep paralysis, HH, and the rest.

I avoid all grains, particularly gluten, all processed sugars, and some fruits & herbs I find trigger my C right away. (bananas, kiwi, peaches, mangoes, apples, chamomile, etc. etc.) It was all trial & error for me and I've heard everyone with N food sensitivities has a different list (although carbohydrates tend to top everyone's list, and a lot of people avoid foods with choline like eggs & peanut butter,) so I can't exactly just hand you mine and guarantee success. But if you ever decide you want to try it, just find instructions on how to do an elimination diet and then slowly re-introduce foods one at a time and see if you get a reaction. That's how I did it.



#5 greatbig47

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Posted 30 November 2008 - 11:21 AM

hi AG!

So many newly diagnosed go through this instant life change. All of a sudden our symptoms ooze out of us. We look in the mirror and think, "Why am I milking this? AM I milking this?"

I don't think we are. I think we find ways to "get by", and once we realize we can't do it forever, we sort of...let go.

It really doesn't have to be that way, and I think you know this. You listed the way some things used to be, and they can still be that way. A lot of people find ways to make things works. It's one of the really cool traits we have (oh...I bet NO one has told you there are some really great things about being narcoleptic yet, have they?).

When we first get news that there's a name for these things that happen to us, it often seems to throw our world into a crazy tail spin. I know for me, I had to be able to take everything I used to do as a marker for what I was still capable of. I did it before the white coats told me I was N, and I have to know inside myself I was still able to do those things. Not to prove it to my wife...or Mom....or my own kids...but to me.

Everyone in the world can say I'm lazy...and that my doctor has crippled me with a mere passing of his magic diagnosis wand. People will say whatever they are going to say. For me, I had to realize what I was telling myself mattered much more, and whatever I was telling myself directly affected every minute of my existence.

The people around you might not ever "get it". If you need a sympathetetic ear, we're hear for you. It doesn't have to be this way...it can actually be much, much better than you can imagine.

We're here for you, ag!

It can (and will) be okay wink.gif

-Stu

#6 amazingracie28

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Posted 30 November 2008 - 11:40 AM

QUOTE (greatbig47 @ Nov 30 2008, 11:21 AM) <{POST_SNAPBACK}>
hi AG!

So many newly diagnosed go through this instant life change. All of a sudden our symptoms ooze out of us. We look in the mirror and think, "Why am I milking this? AM I milking this?"

I don't think we are. I think we find ways to "get by", and once we realize we can't do it forever, we sort of...let go.

It really doesn't have to be that way, and I think you know this. You listed the way some things used to be, and they can still be that way. A lot of people find ways to make things works. It's one of the really cool traits we have (oh...I bet NO one has told you there are some really great things about being narcoleptic yet, have they?).

When we first get news that there's a name for these things that happen to us, it often seems to throw our world into a crazy tail spin. I know for me, I had to be able to take everything I used to do as a marker for what I was still capable of. I did it before the white coats told me I was N, and I have to know inside myself I was still able to do those things. Not to prove it to my wife...or Mom....or my own kids...but to me.

Everyone in the world can say I'm lazy...and that my doctor has crippled me with a mere passing of his magic diagnosis wand. People will say whatever they are going to say. For me, I had to realize what I was telling myself mattered much more, and whatever I was telling myself directly affected every minute of my existence.

The people around you might not ever "get it". If you need a sympathetetic ear, we're hear for you. It doesn't have to be this way...it can actually be much, much better than you can imagine.

We're here for you, ag!

It can (and will) be okay wink.gif

-Stu





You all honestly and seriously rock! biggrin.gif

#7 becky

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Posted 30 November 2008 - 11:43 PM

amazing,

i'm going through the EXACT same thing as you right now--i was just dx'd this august and have been finding that now that i'm getting my meds sorted out and i actually know what's wrong and what's going on, i feel like the N's gotten WORSE. some days are MUCH better than others, i'll admit it, but what really helps cheer me up when i'm frustrated or think too much about how it's going to influence me the rest of my life (blegh) is knowing i was diagnosed relatively early. even though i KNOW i've had symptoms since the beginning of high school, i'm only 21 and caught it early enough so it didn't start to spiral crazily out of control and manipulate my life like i've heard it can (to all y'all who have dealt with it for years while handling life and jobs and kids and THEN were dx'd--i don't know how you did it. i wouldn't have handled it half as well as some of yall! SO much respect). so there's always a silver lining to everything...and i'm really hoping it does get better, but that does seem to be the general trend according to everyone else hahah. so i'm right there with ya!

and yeah, i do get overwhelmed and frustrated, and being in college is so difficult sometimes, and my brain's never really worked well--i have a horrible memory and i'm ADD so i can't focus on anything or find motivation when i should or finish work on time--and so many mornings i'm too tired to get up or to go out at night, but just knowing that i actually have N and i'm not just lazy or unmotivated or stupid is so liberating. i know it sounds to others like i use it as a crutch sometimes, but i don't think we ever really can--i mean, who honestly understands what we're going through BESIDES us? so don't worry about that. at least you have a husband who's supportive and others around you who are trying! my boyfriend just read an entire website i sent to him about N and it really made my DAY. oh, and one thing i've found helpful--the gluten-free diet. i'm on 70 mg vyvanse, 90 mg supplemental adderall and then provigil and sonata when i need them, but i've felt a lot better since i've stopped eating gluten and have gotten to cut back on the provigil for wakefulness's sake...now concentrating is harder than not being sleepy sometimes! so just try different things out and you'll find some solutions eventually--and even though they won't ever be perfect or cure-alls, then at least they help : ) and i just realized i'm rambling as well and i really need to get off here and start a paper hahah, but the point was that there are people that understand and that are going through the exact same thing you are, whatever it may be (current example prima facie = moi hahaha), so don't get too down. the grass is always greener on the other side, but there's so many good things on our side too! : ) now i need to go ahead and take my own advice and sign off--take care!

becky

#8 sleepless sleeper

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Posted 30 November 2008 - 11:48 PM

faster heartbeat, little faster breathing-but I'm still tired through it.
I take it that you're taking stimulants? Dextroamphetamine works for me, but it can make my heart race. I try to not take the max dose.

By the way, how is your sleep? Are you taking a sleeping aid?

my Lupus
This alone is enough to make anyone tired. Is this a progressive disease? I thought that it was. If so, maybe this is part of the problem.

I slept almost 12 hrs last night and am still falling asleep for naps on the couch
I do the same thing, and I know how frustrating it is. I feel completely worthless.

before I was dx'd-I was tired and still pushed through and got things done even though it was horrible.

I look back at what I used to be able to do, and I don't have a clue how I did anything. It's gotten easier to accept because I just don't allow myself to walk down memory lane. There was no other way to cope with the depression that came with it.

Is that what you have to do when you have N.
When I was a teenager, a friend of mine said something that literally changed my attitude towards life: "You gotta do what you gotta do." I had to work full time in 12th grade because my parents had so many health problems, so that saying became a mantra. It is now so deeply ingrained in my head that it makes it difficult for me to accept the fact that I can't do much of anything. Be easy on yourself. Be kind to yourself. Not being able to do something is not laziness if you want to do it. Remember that what needs to be done is a never ending list. Actually, you'll (most people) never get your perpetual "to do" list completed. What you have to do when you have N is probably not much different than what someone must do with any other disease: cope.

Does it get any better?
Not for me so far, but it does for many others!


I want to answer more, but I've got to bed. Hang in there! You're loved and understood here. Don't feel like you're whining, either. As for me, sometimes a good whine helps, but you're doing beautifully.

#9 amazingracie28

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Posted 01 December 2008 - 11:55 AM

I take it that you're taking stimulants?
I'm taking Adderall 3 times a day-total of 40mg daily. I really wish it had a consistent effect-sometimes it works, sometimes nothing, and sometimes I feel like I'm getting ready to have a heart attack!


By the way, how is your sleep? Are you taking a sleeping aid?
Usually I have no problems getting to sleep, but there are nights when I feel like I've done nothing but dream all night long. Lately though I've been waking up during the night here and there. Not very consistent.

my Lupus
This alone is enough to make anyone tired. Is this a progressive disease?

I don't know if its so much progressive-parts of it are I think, like the joint problems and such. Otherwise, I usually just wait until something goes haywire and deal with it at that time-I am prone to blood clots though I've been able to control that with blood thinners and have not been in the hospital for about 10 years-woohoo!

I look back at what I used to be able to do, and I don't have a clue how I did anything.
That's exactly how I feel!!!!! I think that people look at me thinking, "you always got things done before". I just never let on just how hard it was. So many people have said once you're diagnosed its almost like you let go and give in to it. I think that's where I'm at.

Remember that what needs to be done is a never ending list.
Excuse me while I go get this tatooed on my forehead so I can get this into my head!!!!
This is so true!!!!



Sounds like I just need to keep talking to my sleep doc and try to find what dosages/meds work the best. I'm going to really try to lighten up on myself and roll with things. I've gotten so much awesome feedback on this from everyone. I'm actually starting to feel somewhat normal...lol....

#10 amazingracie28

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Posted 01 December 2008 - 12:08 PM

(to all y'all who have dealt with it for years while handling life and jobs and kids and THEN were dx'd--i don't know how you did it. i wouldn't have handled it half as well as some of yall! SO much respect).
I couldn't agree more-my woes are nothing compared to some of the things I've read on here....


my boyfriend just read an entire website i sent to him about N and it really made my DAY.

That's so great-just knowing that someone will take the time to try to understand N. is awesome! I'm so happy for you wink.gif


and i just realized i'm rambling

lol-I've become a huge rambler these days, sometimes my brain is screaming for my mouth to stop but it just doesn't happen....


Hang in there with school-I can't imagine how hard that is. I was able to get through school before the N. got bad thankfully. I give you a lot of credit for what you're doing and the problems you're having to deal with. There are so many inspiring people and stories here....

#11 sleepless sleeper

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Posted 01 December 2008 - 01:03 PM

have not been in the hospital for about 10 years-woohoo!
CELEBRATION! Streamers... confetti... AWESOME!!! laugh.gif


So many people have said once you're diagnosed its almost like you let go and give in to it.
I don't know if this is harsh or not, but it's what I've come to accept as life. Regardless of what causes a disease - food allergies, mosquito bites, genetics, you name it - once a person is diagnosed with an illness that is not curable (some people beat the odds) that person has that disease. Some illnesses don't really become that noticeable until they are full blown, or a person may blow off symptoms thinking that they're tired or have a bad cold. My mother had a gleoblastoma multiforme brain tumor that was the size of a large orange and it had actually invaded the corpus colosum (sp?), which means that it had crossed into a deep part of the brain and was irreversible. She was so horribly ill before she was finally dx'd. The same with my father. What I'm getting at is that maybe your N is not such a simple disease that is going to be dx at the beginning stages. Maybe you've had it for many years, and it was at a stage that you could still function with more steam. Maybe the way your N interacts with your Lupus really kicks your butt. Some people on this website will say that your N is not you, and that is true. But if N and L wear you out, then that's the way it is. I've wasted too much energy worrying about what N is doing to me and fighting it. I'm lucky to get my sorry butt out of bed and to the couch. If I can focus on my kids for more than 30 minutes without operating on automatic pilot or fading out, then I count it as a good 30 minutes. I usually have to do that: break my day into little bits so I can feel as though I've accomplished something. Yep, that sounds harsh, and I used some extreme examples. I hope you get my point, though. I'm sorry about that, but if I go back and try to reword what I've written then I'll really mangle it rather badly.

It seems that some of the users here have had luck with changing their diet. It's my understanding that if you go the gluten free route, then you should be extremely strict with it. Think of it this way: It has to do with food allergies. If you are allergic to something, then the slightest amount of that something can start a reaction so it's best to just not expose yourself to whatever that somethig is. I hope that makes sense. User HeidiL has a website that has so much info on it along with many links. She's done an extreme amount of research on this topic. Personally, I could probably benefit from this, but I'm having a difficult time. My night time binging is better!

I'm going to really try to lighten up on myself and roll with things.
Good job!


#12 amazingracie28

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Posted 01 December 2008 - 03:28 PM

Maybe you've had it for many years, and it was at a stage that you could still function with more steam.
I think that may be the way it is-I remember having symptoms years back, I just always shrugged them off. In hindsight I definitely remember having sleep attacks, but I was a stay at home mom until about a year ago when I started working full time. Back then if I needed a nap I could nap when the kids did and it made a huge difference. Now my schedule is so different with no opportunity to nap during the day at all. Much more demanding than it used to be. Not that stay at home moms have it easy by any means-for me it was just a lot more flexible. You don't sound harsh at all-I completely understand where you're coming from smile.gif
As for the diet-I'm with you on the nightly binge, although my office is starting its own version of the biggest loser (today actually)...lol....I'm going to try to cut down on the binging since the weight is going to be out there for the whole office to see...yikes! Maybe that will help get out of this slump and get me back to some version of my life.




#13 sleepless sleeper

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Posted 02 December 2008 - 10:31 AM

Naps are the only way to go
[attachment=69:naps.JPG]



The buddy system is the best. Good look with the weight loss program!
[attachment=70:buddy_system.JPG]



Yes, Kimberely, I too, adore the I canhascheezburger site.

Any of you needing a chuckle? go to the site for some righteousness laughter. Some of ultrakawaii is doable, although it does become overload.

But laughter is the best medicine for any condition, especially N!!!!!!

#14 jenji

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Posted 02 December 2008 - 01:36 PM



my Lupus
This alone is enough to make anyone tired. Is this a progressive disease?

I don't know if its so much progressive-parts of it are I think, like the joint problems and such. Otherwise, I usually just wait until something goes haywire and deal with it at that time-I am prone to blood clots though I've been able to control that with blood thinners and have not been in the hospital for about 10 years-woohoo!


Do you have antiphophilipid syndrome? If so, (raising paw) so do I. However, I went off blood thinners about 10 years ago b/c I just couldn't deal with it anymore after I had a serious car accident whilst on them. Yeah, that was not pretty. Anyway, gradually my PTT levels went down and now my APLA tests are pretty okay. I haven't been tested again in a long while though.

Anyway, I was just curious if this is what you're dealing with b/c it seems a lot of people with N have other immune system conditions as well. Just doesn't seem to be a frivilous coincidence to me.

be well,
jenji

#15 amazingracie28

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Posted 02 December 2008 - 02:10 PM



Hi Jenji,

Funny you should ask that-antiphospholipid syndrome was what I was first diagnosed with. From there is progressed into Lupus, so I guess that part of it was progressive...I also have a horrible time with Raynaud's-My rheumatologist said it was part of CREST syndrome? I only have two of the three letters in CREST though (calcinosis, Raynauds, esophogeal dysfunction, and I'm not sure how to spell the "s" and "t"). My major problem with the Lupus are blood clots-I tried not taking the blood thinners when I was younger but it always landed me up in the hospital. I read that some think N. can be caused as an autoimmune reaction so I asked my doc if he thought my N. could have been brought on by the Lupus. He said it was possible but that's about all he said. I agree that there seems to definitely be some sort of connection between N. and other autoimmune type things....








#16 jenji

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Posted 02 December 2008 - 04:31 PM

[quote name='amazingracie28' date='Dec 2 2008, 02:10 PM' post='7014']
Hi Jenji,

Funny you should ask that-antiphospholipid syndrome was what I was first diagnosed with. From there is progressed into Lupus, so I guess that part of it was progressive...I also have a horrible time with Raynaud's-My rheumatologist said it was part of CREST syndrome? I only have two of the three letters in CREST though (calcinosis, Raynauds, esophogeal dysfunction, and I'm not sure how to spell the "s" and "t"). My major problem with the Lupus are blood clots-I tried not taking the blood thinners when I was younger but it always landed me up in the hospital. I read that some think N. can be caused as an autoimmune reaction so I asked my doc if he thought my N. could have been brought on by the Lupus. He said it was possible but that's about all he said. I agree that there seems to definitely be some sort of connection between N. and other autoimmune type things....


Wow. Consider me floored. I have never heard of CREST syndrome and I thought I'd heard it all! I never had the positive ANA test, but I had many, many symptoms of lupus when I first became ill and basically they told me that we should just treat it as lupus provided I had the positive APL test and therein began to call me a "false positive" case of lupus. I mean, wow. Really? It took everything I had not to ask if the doctor had pulled that particular dx out of her ass. Frankly, CFIDS/FM is a far more accurate dx as far as onset and symptoms go, but doctor after doctor just came back with various results and different conclusions from MS to CFIDS to lupus. Finally, I said enough--the steroids, antimalarials etc all made me even sicker so I just stopped taking all of that nonsense and went with my gut--that I definitely had a classic case of CFIDS/FM and that most of these rheumy docs were useless.

Years and years later, when I was finally dx'd with N it made perfect sense as to why I'd have FM b/c I wasn't sleeping properly and getting restful, rejuvenating sleep; so yeah, my body was a jacked up. For years I insisted that my something was wrong with my sleep and for years they told me I needed to practice better sleep hygiene...they asked: had I tried that? That's where I would recite my sleep hygiene to them and they'd be surprised to see that I had been through this nonsense before and was indeed looking for some real answers, as opposed to the pat on the head.

The Raynaud's has been with me since a kid, so I dunno the links between autoimmune/N etc, but there are definitely some links. You know another link I've seen over and over? That those dx'd with these autoimmune diseases were extreme extroverts before getting dx'd. Usually go-go-go overachievers in a sense, yet the paradox is that when you first become ill many docs will treat you as lazy or weak or neurotic. It's extraordinary how insensitive and blind some docs can be.

I'm just a bit confused, so they say you have CREST, but also lupus? B/c I see that CREST is a type of lupus (scleroderma type), but wait.... ..what? Does CREST have flares much the way lupus does and how can you make the difference betweent lupus fatigue or N fatigue? Then again, does it really matter---beat tired, is beat tired, yeah? Do they think that CREST is triggered by something? Hereditary?

Just curious...

jenji

#17 sleepless sleeper

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Posted 02 December 2008 - 07:42 PM

schleroderma would be hardening or scarring, right? The same as the "sclerosis" in MS is derived from Latin meaning scarring? You're both very strong women, and I really admire you.

N can be an autoimmune disease. I believe that many of these autoimmune diseases and/or neurological diseases have so much in common. Especially considering that several of them have had research tracing back to some of the same genetic mutations, or the same genes, I hope you get what i mean! I can't remember each tidbit of info.

I guess that we have to be set up genetically in order to get most diseases, which is probably why some people have something that their parents had even though doctors say that whatever that something is is not hereditary. Hope that sentence makes sense. What do you think? I've made this comment a few times and not many people give their thoughts on it so if you don't mind, I'd really like to know your opinion. Several years ago I read about some research that made such a huge impression on me. It was about a common genetic mutation that researchers found among a very few African women. These women were prostitutes that had been repeatedly exposed to the HIV virus yet they had no infection. I know HIV is not exactly a N topic, but this bit of data made me change the way that I think about illnesses and how people get them.

You can probably, very easily, actually, tell that I'm not in the health profession. I can't help but think that when a true cure is found for one of these diseases that seems to have related symptoms with other diseases then that cure will most likely be able to at least help with the other diseases. Maybe I'm saying something that's a no brainer for most folks. I suppose that my ignorance is showing.

Again, both you ladies have my respect. Actually, most people on this site do. You're an inspiration for me. Thanks for sharing so much about yourselves, it helps me to put my health issues into perspective.

#18 Mike M

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Posted 02 December 2008 - 10:21 PM

QUOTE (sleepless sleeper @ Dec 2 2008, 06:42 PM) <{POST_SNAPBACK}>
I guess that we have to be set up genetically in order to get most diseases, which is probably why some people have something that their parents had even though doctors say that whatever that something is is not hereditary. Hope that sentence makes sense. What do you think?


While I realize that this question was not necessarily directed at me, I feel like sleepless needs to be acknowledged for being on completely the right track with this. We are genetically predisposed to this condition. Dr. Mignot (super Stanford guy) gave a great talk at the NN 2008 convention. With the mapping of the complete human genome, many autoimmune diseases are becoming more understood. Dr. Mignot is months away from confirming that narcolepsy with cataplexy is clearly an autoimmune disease tied to at least two genes AND an environmental onset. Likely, most of the autoimmune diseases follow a similar pattern (and some do share common genetic factors). A person must have the genes and experience the external onset event.

Dr. Mignot in his research on narcolepsy with cataplexy has found a gene that works with the HLA *0602 gene like a glove fits a hand. He needs to replicate the experiment to validate it, but everything says he has made a huge breakthrough. It won't "cure" narcolepsy, but it will provide huge insights, and it may lead to being able to prevent narcolepsy in some people who are pre-disposed genetically. He also has seen a few patients soon after initial onset. All of them have had similar results on a western blot test and have carried a similar viral load (likely indicating that it is a viral onset). The other thing that his results should do is clearly confirm that narcolepsy with cataplexy is an autoimmune disease, meaning that immunologists will get interested and excited about working on it.

Since Dr. Mignot's efforts are focused on narcolepsy with cataplexy, it is a question mark what his work means for someone like me who is likely narcolepsy without cataplexy (or if I have it, it is mild or "abnormal" which is still grouped as narcolepsy without cataplexy). At the same time, knowing how narcolepsy with cataplexy "happens" can only help in understanding how narcolepsy without cataplexy "happens."

I hope it was okay that I responded. I also want to voice my admiration for everyone who posts here. The longer I deal with this, the more I come to appreciate what we all can do. Narcolepsy is not easy, and some of us have situations that blow my mind, but we each do what we can, how we can. We all deserve praise for that. Thank you for sharing your stories and your wisdom.

#19 amazingracie28

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Posted 03 December 2008 - 03:13 PM

Hiya Jenji

CFIDS/FM is a far more accurate dx
CFIDS/FM-I'm having a brain drain, what does that stand for?

The Raynaud's has been with me since a kid
I HATE the Raynauds-Its not so bad since I moved down south, but I lived almost my entire life in Wisconsin and I could hardly use my hands for several months out of the year...and it hurts!

That those dx'd with these autoimmune diseases were extreme extroverts before getting dx'd.
Usually go-go-go overachievers in a sense, yet the paradox is that when you first become ill many docs will treat you as lazy or weak or neurotic. It's extraordinary how insensitive and blind some docs can be.

I was very very extroverted-always outgoing. Lately though I've just kind of pulled back from everything and everyone. I so sympathize with you as far as the doc who look at you like you're a loon-would you believe there were actually doc I went to as a kid who had no idea what antiphospholipid syndrome even was? I shouldn't be explaining this to them-they don't pay me enough..lol...

I'm just a bit confused, so they say you have CREST, but also lupus
To be honest with you, around the time my rheum was telling me about it all I really heard was blah blah blah. She did say that since I only had 2 of the 5 letters I didn't TECHNICALLY have CREST....blah blah... I really don't know if its part of Lupus or not, I kinda stopped listening around that time...lol...
I have systemic lupus and have not really had too much of the skin involvement unless I go hang out in the sun, that's never a good thing. There's probably more info on Crest these days-this was like 10 years ago that I talked to my rheum at the time about it. I agree though, I haven't seen my rheum in like 2 years now b/c she just never does anything but charge me for the visit! Kinda useless.....

AG


#20 amazingracie28

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Posted 03 December 2008 - 03:40 PM

While I realize that this question was not necessarily directed at me, I feel like sleepless needs to be acknowledged for being on completely the right track with this.
Absolutley! I've been a little slow on the draw today-sorry sleepless!! I completely agree with you all as far as the genetic links and environmental triggers. Its interesting in my case that neither of my parents have any autoimmune problems but both my sister and I do-she also has Lupus, but with features different than mine. I've often thought that mom and dad must have some sort of recessive gene (is that the word I want, recessive?) that for some reason happened to become activated for both my sister and I. Genetics as a whole I think is so interesting. Its awesome to actually have a discussion about it-not really the sort of thing that comes up at the office...lol....


I hope it was okay that I responded. I also want to voice my admiration for everyone who posts here. The longer I deal with this, the more I come to appreciate what we all can do. Narcolepsy is not easy, and some of us have situations that blow my mind, but we each do what we can, how we can. We all deserve praise for that. Thank you for sharing your stories and your wisdom.
Thanks SO much for responding!!! As someone newly diagnosed I feel like I've come into such an environment of support and understanding. And for a bunch who seems to routinely bemoan the loss of our brains (lol) there sure are some very thougtful and insightful conversations that go on....makes me feel like I have my brain back for at least a post or two laugh.gif I also would like to say how much respect I have for everyone-I don't know how you all do it, especially with the things some of you have to deal with-I'm learning a lot about how to keep on keeping on smile.gif


I may be MIA for a few days....my family is flying in tomorrow, haven't seen them in almost 2 years...take care ya'll, muah!