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Now I Have A Diagnosis - But Is There Hope?

narcolepsy xyrem

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#1 jennel

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Posted 17 July 2013 - 11:01 PM

Well - I see some of you have been around the narcolepsy block a while, while others like me are new to this game. Not that any of us are new to coping with the symptoms it seems. 

 

Honestly, the last time I "remember" sleeping like a "normal" person was when I was eight years old...and I'm less than a month away from the big - Four-Oh....so ya, it's been a LOT of tests including a LOT of sleep studies...living on stimulants for years and only progressively worsening fatigue and illness....remember one stage where I was contracting and making very little. Without insurance I went every week to the cheapest pharmacy I could find to buy my week's worth of Provigil - for $250 at the time, i.e. $1,000 a month. I'd get my grubby little hands on those few pills like a junkie with his dealer...and then I just had enough left for bologna and bread. How I used to feel such jealousy for those folks pushing their carts full of a variety of food ... me and my barren little my basket and my crackly pharmacy bag. That year I cleared $20,000 in income and had $11,000 in deductions. 

 

I remember saying at one point, How many thousands of dollars do I have to spend to learn how healthy I am?  I honestly could not tell you how many sleep studies I've had. I lost count some time ago. Don't even ask about other bizarre tests - like getting shocked 250 times or having needles with electrical currents running through them...oh joy.

 

Let's stop here and insert - Me: Happy, cheerful, encouraging by day, lately - whiny and feeling sorry for myself.  I actually thought when I told some folks about my diagnosis I was going to get some validation. How many of you have heard the ol' "You just need to..." <insert lifestyle change/mental adjustment> i.e. <go to bed earlier> <push harder> <stop being weak> <when you sleep too much it just makes you more tired>....and how about when I was at my parents and my father would break down my door (I did have six alarm clocks blasting, roommates used to say my room sounded like a bomb going off) and YELL in his deep, thundering voice "Get your A** UP! You're gonna lose your job."  And all I wanted was for him to leave so I could go back to sleep.

 

Last summer the onsite nurse for my company called the paramedics because she was convinced I was having a stroke. I kept begging her to just let me sleep. I actually napped in the ambulance, sirens blaring and some four hours later awoke, asking why the doctor hadn't arrived. He's tried to wake you multiple times and we couldn't. I have been seeing a sleep "specialist" (somewhat renown!) for FIVE years!!

 

Am I allowed to be upset about this? To be told I'm weak or lazy - some deficiency that i could/should be able to just "will" myself up out of...and then when I try to tell people now...it's not even better. Oh, yes, I'm tired too!! Really? You are? Do you take the modern day equivalent of speed four times a day plus a little to just drag your sorry butt home to sleep some more? And just this weekend my father had the gall to tell me the real issue is all my medicine...in other words, it's just in your head. If you would just stop those dr's and pills and exercise you would be okay. There's nothing "really wrong with you!"

 

How many people got the, "Are you taking another nap?" talk?  I really am not wimpy, whiny, full of self-pity typically....but I'm really tired of being tired. I know everyone on this forum is and forgive me, I really just want someone to know how much strength it takes to live WITH this crud! I know it can't happen, but I wish my naysayers, really could just slip into my mind for five minutes to try to live through it all.

 

The constant battle to know when I actually DO need ANOTHER dang pill....versus putting my foot down and saying NO MORE! And all the people who love to tell me how FEW pills they take. Oh, why thank you very much. Wasn't that helpful to my life? I guess we're all selfish by nature and in my selfishness I will say here and here only - for just a couple of minutes, could we let it be about me? Without judgement? Or condemnation? Could somebody acknowledge this condition isn't a result of bad decisions on my part?  Could somebody say, Wow. That sounds really harsh. Way to go for fighting through thirty-one years of increasing fatigue and illness, through angry bosses and lost jobs and having people tell you to give up on a normal life and just take disability and fighting for the closest thing to a normal life as you can get.

 

Sometimes I feel like if it weren't for medical advances natural selection woulda taken me out...some days I kinda wish it did, but mainly I keep on fighting, holding out for (ya it's cliched) a "better tomorrow."

 

Soooo, I was up to six stimulants with a mixture of amphetamines and Provigil and a C-Pap machine to haul with me, gawd forbid I should ever want to spontaneously crash at a friend's house after an evening out. Also have a lovely little cocktail of other symptoms - type II diabetes with worsening neuropathy, hypothyroidism, blah, blah, blah. Yes, it seems my body has all but broken down.

 

I'm trying to not want Xyrem to be my salvation, but look to it as an aid for assistance. The worst of the side effects are past, but I wonder if I'm not trading in one set of issues for a new set of issues. To cloud the matter further, I started a new diabetic med and of course like every pill it has its own lovely little symptoms list ... and I would hit that jackpot of course! (i.e. got the side affect now treating THAT!)

 

And I could hardly eat before .... now... oh my gosh. And since I'm severely overweight despite eating about 1/2 what most healthy people I know eat, I really don't think people believe me when I tell them I can't eat.  I mean it's an issue. I feel sick from hunger and I don't want to eat. I force down a few saltines or applesauce and have solace for a few minutes....it is about 10:00 p.m. before I want to eat anything. Just as it's time to take my medicine.....

 

I love not feeling exhausted. Is there anyone here who has seen a betterment to their life through a Xyrem regimen? Or just anyone to say - hey, it won't always  be this rough? I'm really struggling right now - enough to pour out my sob story to strangers cuz I refuse to be THAT person on FaceBook and no one i know wants to know how hard it really is...I can see them start to sorta freak out after only a couple details, so I really limit what I tell people. 

 

I think about life as a football game sometimes....How the players bound onto the field in overflowing energy and enthusiasm....fast-forward and it's the end of the third quarter and the first string is still in...and they pause for a second before arising from the ground after a tackle...their movements slowed...slurred by the wear of the exertion....My fight feels all gone. I just don't want to fight just to feel normal.  Worn and tired....I really hope someone can tell me a story of hope to help reignite my flame to keep on....keep on....keep on....



#2 Hank

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Posted 18 July 2013 - 06:43 AM

It will get better - if you just try harder. HA- just joking. I have heard all that !@#% before too. I never feel lonelier than when I look for the support of others. When I have needed support, I either log on here or pay a co-pay. In general, my "support button" has delivered an electric shock, so I have been conditioned to be very careful about discussing my symptoms.

 

You are a gifted writer- I enjoyed reading your post.

 

I was on Xyrem for 7 months until I discontinued it in Jan. I am still benefiting from being on it. My EDS is very manageable. Many have benefited greatly from Xyrem- others have had mixed results. It is not an easy drug to be on, but it works like nothing else.

 

I hope you get some relief soon.



#3 jennel

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Posted 18 July 2013 - 12:07 PM

Ha Hank! You are FUNNY!! I did laugh out loud at your opening line. Hee hee! :)  I ended up finding a thread under Day to Day I think it was about when family doesn't understand. So realizing that lots (most?) folks with narcolepsy receive the indifference/lack of understanding etc. is helpful. It's always surprising to me to find I am comforted just to know that I am not alone in my "misery!" Guess that's the thinking behind the old saying, "Misery loves company!"

 

I don't want to be negative, but I do need somewhere to go when it gets to feeling like too much. I'm glad to know this forum is here for connecting and seeing others experiences.  Thanks for the compliment on writing. I always appreciate feedback. :)

 

Yes, with health stuff/meds in general I have learned as I'm sure pretty much all have that it is best to just not share much. I guess I still think I can share a LITTLE but usually it turns out I'm wrong! Ha. Would think I'd be used to it by now - ;) hee hee.

 

For some reason I keep replaying this moment Sunday. Set up - about once a month I go see live music and have ALCOHOL!  This = No Xyrem. Without a complete play by play I end up with two hours of sleep. My apartment is thoroughly trashed from the escalating illness/fatigue prior to diagnosis and the craziness of the first few weeks on Xyrem. I feel like it is an archaeological dig....ahh, yes, that layer would be dated third week from complete lack of effort onset. My carpet is covered in layers of clothes and this "shoe storage project I started on a good day to transition my winter/summer shoes...yes...I realize it's now July and I've not handled the shoe thing. This is my life.

 

I had points where I woulda paid big money for saltines...except...I didn't want to open the door or let anyone in my apartment because it's an utter shambles and I don't want the judgement. Hmm. So, I manage to hide much of the mess in my closet, deal with what I can deal with and grapple to believe my friend will love me regardless of the cleanliness (or lack thereof) of my home.

 

She does tell me that it is nowhere as bad as I described it and that she was afraid there would be nowhere to sit! Ha!! So I heave a mental sigh of relief that she's not judging me. But then (why does it feel like there is always a "but?!") she says, You have to care for yourself enough to clean your apartment.

 

I tell her, Oh, well, you see me sitting here and I seem fine, but you should understand that I have been..." and I do this imitation of me - sprawled back on the couch, limbs slack, jaw agape, almost let a little drool piddle out...i.e. this is me.

 

And there it is. That look. I dissect it and try to determine it but I see it over and over and over. I do think it's motivated by various things depending on the person. And yet I see it replicated again and again....disbelief-terror-confusion. I bet in those shows on TV where they show you this "face" equals this emotion, like on the cancelled Lie to Me or the super sleuths that can see through folks masks. But they show something there in that look to me. It's my "Shut Up Jenne" queue. 

 

C'est la vie.....and I remember that laughter is good. So I dial up me some John Pinette on YouTube and laugh until I have to take a break cuz my ribs are hurting so much.

 

Anyone who looks this far - have issues with being unable to eat on Xyrem?  I have all the symptoms of NOT eating but still fight to eat. And as I'm laughing I realize I'm still sorta disgustingly sick to my stomach and it's not just that the laughter is making my ribs hurt, I also half feel I'm gonna hurl.

 

And I ask myself why in a moment of feeling resplendent and glorious I made a commitment to speak tonight at bible fellowship! LOL But I decide to switch my message to one of endurance and patience and not asking the dreaded "Why??!" question and not focusing on our circumstances, etc. etc.

 

It is helpful. And in the facet I'm exposing in this forum that part of me is probably not so very evident. However, I suspect we all have these many sides to us and we have the good the bad and the really really omg just look away horror of horrors - UGLY! ;)

 

Thx for seeing "muh uglee" and still making me laugh. :-D

 

(Is there a way to upload a photo here? I actually took a pic of the studio i live in in all it's unbridled mess glory....now you can see the floor!! Yippee!!)



#4 Ferret

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Posted 18 July 2013 - 10:32 PM

Sometimes, as Hank says, you're damned if you do and damned if you don't. I don't like scaring the crap out of people but will keep silent until something happens. Then, I will explain. Depending on their reaction, they either come into the fold or get shut out. Life is way too short to deal with the stress of those who don't get it.
Diagnosis is a turning point but there is no magic pill that fixes the problem. Be patient with yourself and take the time to listen to your body. It's a process and you will find a way to have a reasonable life again even while making concessions for your disability. Take the time to read about dietary and lifestyle changes that may help. IMHO, ANYTHING IS WORTH A TRY...but,then It's only been 27 years since I was diagnosed and I'm still learning.
The journey of a thousand miles begins with a single step.

#5 jennel

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Posted 18 July 2013 - 11:12 PM

Hank & Ferret your words are sincerely appreciated! Truly. I know about the judgement stuff - just about life in general. I am Christian and recently left the group I was associated with all my life to a new group. I experienced a lot of the old group saying they didn't judge and I kept seeing judgement occur. I have to say this new group is pretty amazing, but even with them it's more a case of they just don't understand, and I also see where the couple folks I've opened up more to want to make sure I keep a balance of not identifying too much with the disease. I know this will be a balancing act of accepting the reality of how I am impacted while not quitting on life. 

 

I haven't seen much written about that balance yet but I'm new to the site and have only read a handful of threads. 

 

I will admit I let myself believe for a little bit Xyrem was the magic cure. But even as I did...I knew from past experience that was a slippery slope. I did have a really good conversation through the Xyrem patient mentor program. Our conversation was my first real awakening to the reality that there is a lot of discipline and regimen to control this disease. That has me a wee bit nervous. I can lean toward impulsiveness and being a night owl. But I've had periods of discipline and they were helpful so I can see that I can return to that lifestyle.

 

Thinking about it earlier I realized my life will likely continue to be controlled through uppers and downers. But at least now I'm not taking six stimulants and still feeling utterly and completely exhausted.

 

I am having some strange symptoms - even an almost drunk, loopy feeling, sorta disconnected from myself...I can have conversations and do things, but then I'm driving and I find myself spacing out and I'm a little scared....I don't know if I could have a quick reaction time if needed. Hmm.

 

Ferret, I just saw that statement on FaceBook and now here from you. I am encouraged by the words the journey of a thousand miles begins with a single step.

 

And then I have to bring myself back to remembering I've survived and even been successful without the knowledge I have now. 

 

And Hank, sadly I've found some of the most hypocritical people to be religious. However, I have been extremely blessed to finally land among a group of people, many with similar scars from other organizations, who are living life and loving folks and honestly striving to not judge.

 

Even before my diagnosis, I had a great conversation with a couple. The wife shared, When people get to a point in the conversation or begin with - You Need to [Insert Change/Action] - that's when you know you need to take a step back mentally. We get to encourage each other, but we really can't tell each other what we "ought" to be doing. We can only encourage and accept. It sounds so basic, but really, we do want to be loved, understood and accepted. And even if folks close to me are not able to comprehend what I experience, I'll take the love they offer. It really does energize me and get me through the other people.

 

It's still sad to realize how self-involved folks are...I know I am but I also know I really work at putting myself in someone else's shoes and even saying to people, I haven't had your exact experience, that sounds really rough!

 

I do think a lifetime of struggle has made me a lot tougher and more understanding than others. I've been shocked by how many people have told me I was the only one they could open up to regarding an issue and how much it meant that I didn't judge them or how much I encouraged them. I just get really happy to help folks cuz I know how much it sucks when I want encouragement or help and I don't find anyone to help. Journaling helps sometimes. And sometimes I have to burn the journal entry!! HAHAHA But it gets it out somehow. 

 

I sometimes talk to others who share their "struggles" and in a lot of cases I could so easily "one-up" them, but c'mon those peeps are so seriously annoying!! Hahaha. I try to use my experiences to help and not to compare. A good friend once made a valid point of - even if someone else's suffering is "greater" than mine, it doesn't mean my issues aren't valid.

 

And I do believe God is just and that he knows how much harder so many tasks are and that he repays in ways we might never realize - spared from incidents and provided strength or encouragement in a moment of need. But - whadduh I know?? Ha!! And at all costs we must avoid the "Why" question. It's a trap!!! Don't drink the kool-aid!! Hee hee (who remembers that reference? ;) 

 

And I saw a clip of that amazing dude from Australia - Nick with the impossible last name - dude with no arms or legs and happy and inspiring people. It helps put my life into perspective. Like maybe I will have to change course based on what symptoms I experience, but I find a lot of times life hands us an either or scenario and it's a lie. Like the Star Trek test to be a captain. They provide only two options and both suck! And Kirk cheats the test. I aspire to cheat life and succeed despite the obstacles. So I say in a good moment. LOL This statement does not prevent future rants about the unfairness of life and the complete cruddiness of people!!! HA I don't want to shut that door - haha. :)

 

Ya'll rock!! Take care ;)



#6 jennel

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Posted 18 July 2013 - 11:22 PM

And ... for extra background I have a hyper-critical, super-judgemental, has all the answers father. He completely lacks any empathy, sympathy - pick an adjective that isn't negative ;)

 

Great in more ways than I could list and I love him, but I have to severely limit my time with him. I can be right there with him having all kinds of behaviors and symptoms and he doesn't SEE it. He only sees what he has already decided. And I honestly see all the FEAR in him. He is so flipping afraid to accept anything outside of what he has personally experienced.

 

He's the one who told me as I mentioned that I just need to get off my meds and start an exercise regimen. He's one of those dudes who puts on the "happy face" for ALL the world except his family. There he passes judgement on people and criticizes and insults and in general will spontaneously lose his mind in fits of rage.  He would come close to knocking me upside the head when I lived with them as an adult (as a kid he did).

 

He's had serious health issues, but the kind that the world acknowledges and honestly that are handled and after a recovery period he just goes on. Fit as a fiddle, strong as an ox and no comprehension or acceptance for anyone who isn't. I do get he had some stuff happen with his mom as a kid that put this deep, deep fear in him. And I think a lot of folks are maybe scared of the unknown. To try to understand someone else's pain...oh maybe it's just laziness!! Lol ;)

 

Ok i'm seriously loopy and need to quit on this day and accept that it's time to take the Xyrem. G'night, g'morning and g'day to you. :)



#7 sk8aplexy

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Posted 19 July 2013 - 10:26 AM

Have always been, more or less, the same in my mannerism and behavior, character; quiet until you know me, serious (that is, in appearance as well as tone and topic/s) but at the same time really not so much so, contemplative/questioning/hesitant, cautious and very much I try to be conscious (of myself, others and nature being nature -in so many directions and senses of the word-).

I try very hard to judge myself, first and foremost.  And that is, not in a strict or condescending manner, which is unfortunately, how it seems others so often judge upon others.

Before being diagnosed, I was not necessarily at all more outgoing, but maybe much more willingly attempting to participate in the many social settings.

After the diagnosis, I am much more reserved and less willing to attempt such participating, although in ways I feel more sociable because I can, at least to an extent, define or explain odd aspects of my behavior.

The behavior prior to diagnosis seemed very odd, uncommon and definitely unusual, but to me I had never let such matter, because why let others stereotypes bring me down and/or rule me.

My behavior is still what it was and to be specific to what I'm talking about; living with my Mother at 33, having been (being still) single most all of my life, really never having dated or been one to manage such (Cataplexy definitely is a huge aspect of such, which I only realized a couple years back), just not engaging in a lot of social activity but rather engaging in sport activities when I can manage such, keeping to myself and avoiding a lot of what people seem to enjoy (bars, parties, chit chat)...   

I've always had a lot of patience, and I've always been very willing to take the blunt; which is to say, I do not like drama nor being in confrontational interactions, I tend to be very upfront and entirely 100% honest as such allows me to not have the stress and anxieties that, it seems like, many others enjoy and get off on.  Within that all, there is a lot of difficulty but also it is very lovely, because at the end of the day, I am in a good comfortable and calm place, which helps me to get any good sleep.

 

I'm not sure if I've just gone 100% off topic and am just venting or writing pointlessness.

I guess the intent was to just put out my perspective and say don't let others impact you, only when it is someone you really care for and have a genuine connection with, that you should perhaps be pained by their judgements.  Often, being quite upfront and descriptive of what is at the root/s, does bring closure as well as perhaps mutual respect.

Not always, but life is that way.

We so often, don't begin to recognize so much going on, so much changing/morphing/evolving day to day, from technologies to nature it is fascinating yet also comes with certain caveats and/or biases...

 

I'll add that the way I see it, is like this:  I was dealt the hand of cards that I have and that's that, what I have to do is play them however they can be played (without cheat or manipulation).  At times, there are different games we are within, often the hand I was dealt seems to be very much, for the wrong and/or a different game, so it is no good.  But, at different times, it is the right set of cards and play well within.  There's good and bad, I know what is good and I know what is bad, I follow my own beliefs and they are based upon the interactions and the experiences that I've had throughout my life, along with how I was brought up and taught; activities, sports, instruments, arts, public/private schools, college, travels, 1st world, 3rd world, music, tv, movies, show, internet web/s..!



#8 jennel

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Posted 19 July 2013 - 10:52 AM

Thanks Sk8aplexy. I am definitely coming to terms with the reality that those that "understand" or "sympathize" will be the exception rather than the rule. And I have to say it is this site that has allowed me to understand that just in the last few days. 

 

I love the variety in people - folks come in all shapes and sizes and unique blends to form their personalities. I was pretty social and had to start stepping away from activities in my 20's. Now, perhaps like you, I have found I don't have to give up on activity but I have to realize I may not be up to doing everything that some folks do. I had a couple serious relationships but have come to be quite content being single. And I don't know how I would have children - just even the need to come off of my meds to go through a pregnancy and then caring for a child, etc. And I'm peaceful about that. I did go back to live with my folks for a good spell - initially in part to help my mom with MS and it went a lot longer than I meant and almost all of my 30's were with them. However, I was finally able to get UP and OUT last year and I'm so thrilled to be living on my own supporting myself and even just bought a new car - or let me rephrase - I purchased a loan ;)

 

I feel the same about "no drama." It's unnecessary and quite exhausting in my opinion! And keeping ourselves honest helps that sweet sleep we need! I do endeavor to be honest with myself - without condemning myself, which I did for a long, long time. And I do realize a lot of it is from the narcolepsy symptoms. I felt guilty for not being able to do things that others could do. Even last month I got stuck without a car at my parents and my dad decided we'd all go to see some musicians. But I knew I was too tired...I ended up spending 1/2 the show in their car resting - not that I can actually sleep without my c-pap anymore, but I couldn't even hold my head up. And it's slightly annoying that he says that and doesn't care or register that there is an issue. Ahh, c'est la vie, c'est la vie!! :)



#9 Hank

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Posted 19 July 2013 - 11:12 AM

I think one of the hardest things for the people to know me is to understand the chronic nature of this illness. I have become an expert "poker face" when it comes to managing my symptoms. When I am feeling well and when I am not, I look the same from the outside. This can be deceptive. N ebbs and flows throughout the day- it does not go away- ever.

My wife understands more than anyone else in my life. She is as supportive as she can be. That is all I could hope for. And there are still big gaps in her understanding- I accept that.

The past few nights she slept poorly and has been carrying a heavy schedule. When she was leaving for work dragging herself, I asked her to do an experiment:
1- don't tell anyone you are feeling wiped out and haven't slept well.
2- think of me a few time throughout the day. How you feel right now is me on a good day.
3- tell me how your day was when you get home and I will give you lots of sympathy and a foot rub.

When others are sleep deprived- it is rare and they do not like it. Their sleep deprived is maybe a 5 while we live at a well managed 10. It is just hard for others to conceive what their "tired" would be like every day. No more than I could imagine having a headache every day. Or being deaf every day. Or blind every day. Or being in pain every day. It is our ability to live with the "chronic"- ness of N that seems the hardest for others to understand.

#10 jennel

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Posted 19 July 2013 - 11:39 AM

First Hank - I appreciate anyone with narcolepsy and a relationship. Though pros/cons to married and single. It's nice that your wife at least tries to understand.  I love your "experiment" with her!! And your promise of sympathy and a foot rub!! HA!  

 

I think especially your last paragraph is excellently stated. I don't think I've known enough long enough to put it into words so well as you did. The chronic aspect of it. 

 

I remember like twenty years ago thinking, I don't know what or why but I know I am just more tired than everyone around me. I'm still in that stage of reviewing my life through the understanding of narcolepsy - for example, Oh that time in that class where I was crying because I was sooooo tired and just couldn't even hold my head up!! etc. I know everyone here has those stories.

 

As I mentioned earlier I was encouraged to see some clips again of Nick Vujicic. If you don't know the name you may remember him as the Australian gentleman born with no arms and no legs. He suffered severe bullying, depression, questioning, etc. I think he is such an inspiration of someone who came to terms with "the cards he's been dealt" and legitimately makes the best of it. And he says if his coming to terms with his life and being happy only helps one person, "Bring it on."  

 

Not that most folks are going to look at us and understand or get inspired, but I think already so many of you inspire me to keep on keeping on! I know I keep saying this, but I still mean it, thanks for posting and putting into words the concepts I could not. It does help my mind make better sense and accept things/figure things out. Saves me some mental noodling around trying to identify emotions and concepts.

 

I mentioned in another post that I do still struggle with the part - and maybe this is what so much of these conversations are about - of how people in my life have certain expectations and how I can't live up to their standards and how to  a) figure out some way to communicate or B) let go and accept that they just may judge me. Like here's a couple examples - the apartment getting totally trashed and my friend thinking it's a matter of me not loving myself when it was a matter of a bad spell or a friend who I started working on editing a booklet and I haven't worked on it in months and he is really excited for me to provide more feedback, but I have to feel "sharp" and energetic to take on editing not only for grammar but for content....and I start to feel bad that I haven't gotten back with him....or when friends come into town and they want to spend the whole day running around and I know if I want to go to the show that night I can't spend the day doing all this other stuff. For me separating myself to live by myself has allowed me to take out a good bit of judgement I was receiving from family or roommates when I lived with them.

 

But even by myself there are new challenges....like - I haven't had the energy to go to the grocery store for a week. And I'm on my last  bag of coffee!! Lol. 

 

When you were on Xyrem - did you have trouble eating? Also did you have any sorta loopy, almost drunk sensations at any points? It's not constant but...like driving last night I was getting really spacey and it was scaring me a little....I think though I was getting that drunk tired sensation too... cuz I stopped and ate and felt all warm and fuzzy to have a full belly and I was like buzzed getting home!

 

After a horrible couple weeks starting Xyrem - and developing worsening diabetic neuropothy - I finally requested two weeks off. See the dr today and not sure if I need another week off or not....not sure if it's time to just "man up" or if I just take advantage of a little leave time as I'm completely out of leave for the rest of the calendar year. The company requires we "pay" for the first five days of leave. As I was out and I'm a horrible saver....I needed to pull out two years of stock purchased through the company (just like $10 a pay) to cover my five days. 

 

Hank - now that you're off Xyrem do you utilize stimulants and sleeping pills to manage your symptoms? Curious - if you don't mind sharing!



#11 jennel

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Posted 19 July 2013 - 11:54 AM

And Hank I suck at a poker face. :(  I give you kudos cuz when I crash - woah nelly,  :blink:  My head just like drops til it's practically on the table...but hmm maybe it depends on the setting. That's with family/friends.....I'd say if I were sitting in a meeting with my boss, I do better at faking it.



#12 sk8aplexy

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Posted 19 July 2013 - 01:04 PM

Definitely Chronic...  For years prior, I had chronic fatigue along with chronic headaches.  I struggled through it, near 5 days of the week for a stretch of each day, I'd have an annoying headache.  When younger I'd get more severe and debilitating, to the point of puking, headaches about once to three times a month, on top of regular less severe ones. 

Through my 20's though, it was rough and I had no idea my sleep was crap; I thought I was a great sleeper because as long as I wasn't stressing something and waited till I needed to sleep, I'd sleep for hours and hours. 

Unfortunately, I think the table has somewhat flopped, in terms of now I sleep real crappy and not longer than 4 to 5 hours a stretch, even though I remain in bed 7 to 8 hours a night (waking randomly). 

The 'Idiopathic Central Sleep Apnea' was a shocker, but then not really after reflecting on the activities I've partaken in (skateboarding and ice hockey which both involve physical damage, over time).  The VPAP ASV actually made my Cataplexy so much (500% times) worse than ever prior in my life, and getting off of it after the 9 months, of trying so desperately to make it work, was definitely the right thing to do (and Mayo Clinic agreed).   It took months and a lot of other steps, but it did regress thankfully.  However, like I said above, the table has flipped as to how well I sleep nowadays and I never had as many sleep attacks prior either; but hey, it's all a trade off, and I'm content with less headaches, less cataplexy and more naps...

The diet changes, and I think also just grasping the Narcolepsy, accepting the sleep matters, but most of all 'not rushing and pushing myself endlessly' like I did prior, have dramatically helped all around.

 

The poker face, I don't even try any longer, I was never able to begin with; unless of course I was fooling myself, which I did for a long while and still at times discover myself doing such (it can be hard to catch on...).  I get a lot of flack, oh well, so be it.  I can so often, see right through, others discontent or 'not wanting to be serious'...



#13 Hank

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Posted 19 July 2013 - 01:08 PM

I have lived with this from childhood and was recently diagnosed at 45. The poker face took a long time to develop. When I cannot maintain the "illusion" I retreat into privacy. So, socially, I am often a moving target. Never let them see you sweat- or sleep.

Since discontinuing Xyrem I have been able to manage without stimulants. I have unfortunately been unable to tolerate most medications I have tried. I think a big part of that is because my brain went through the wringer with Klonopin withdrawal- after being incorrectly diagnoses and treated.

I take Effexor for Cataplexy and Trazadone for sleep. A routine bed time, modest exercise, stress reduction and morning coffee are working for me currently. I seem to benefit from the "less is more" approach when it comes to medication. I would love to try Xyrem again in the future if I start to decline.

One of the things I appreciate about this forum is that it allows me a sounding board while I try to make sense of all this.

#14 jennel

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Posted 20 July 2013 - 12:15 PM

Hey there Sk8aplexy and Hank. :)

 

Sk8aplexy - I don't know about Idiopathic Central Sleep Apnea. I have sleep apnea and even had surgery back in '08 and was told it was "cured" until Abilify caused me to gain about 50 more lbs (and I wasn't thin when I started it). I'm also not familiar with VPAP ASV...I'm learning little by little as I read various threads etc.

 

Hank - dr's tried me on antidepressants for a number of reasons, but I learned the hard way that I can't tolerate any serotonin medications. I know Effexor is great for some folks, but wow, that was one of the roughest meds I've ever been on. Everyone reacts differently though. I've heard folks say provigil is hard and for me it was just a life save. Also, I have a slight case of tourette's - trilling my tongue and stretching my pinky - but it gets compulsive and it had almost gone away, but when I pulled back on the dexadrine after starting the Xyrem I noticed the tics increasing. Grr - what a balancing act!!

 

I got moved up to 6.5 grams of Xyrem earlier in the week and I have to say...I'm starting to sleep pretty good. I'm realizing I still need to add back some more dexadrine as I'm getting a mid-afternoon punch drunk feeling. Kinda stunning to see that an extra .5 grams a night equals an additional $14,000 a year....thank God for insurance...and try not to wonder what what Obamacare will do to it?? I don't know much about that but what i'm hearing isn't good, but perhaps that's just the perspective of the people I've been around.

 

I was a little concerned about my dr's appointment yesterday. I've been seeing a psychiatrist/sleep specialist for five years and  back in April I couldn't reach him (turns out seven of the office's ten phone lines weren't working!) and I went to see a straight up sleep specialist. That's when I finally got my diagnosis. I have been trying to figure out whether I want to maintain both dr's and had all but decided to drop the new dr when an issue came up with the Xyrem that the new dr addressed in the manner I really felt I needed and the old dr didn't . But there are areas where I really appreciate the other dr. 

 

Any rate the dr yesterday was very cool and we agreed I would continue to see the sleep specialist for the Xyrem while he'll manage my abilify, mood stabilizer and stimulants. Whew. I try to limit my specialists, but sometimes it's a necessary evil. ;)

 

It does bug me a little the dr I've seen for five years and who steadily increased my stimulants never thought to retest me on the MSLT. He's done sleep fellowships with the Mayo Clinic and the University of Chicago, been on Fox News and CNN and in USA today newspaper and some more - all on sleep issues. But the dude never wondered why I was so exhausted. And I wonder of the three or four sleep studies done while with him did I exhibit the same lack of deep sleep that was seen in my latest test? I know they say dreaming during naps is a key to diagnosing narcolepsy, but what really spoke to me was when they showed me the 45 minutes of deep healing, restorative sleep that I got during the six hours I was down for the night. That to me spoke so loudly. I mean, no wonder I've been so sick from everything if my body never has an opportunity to regenerate and restore the cells etc. I've not heard much focus on that but that was the selling point for me.

 

When I was describing all this to my parents and explaining how Xyrem needs a second dose and even an alarm to ensure I wake up to take that second dose my da said, Well if I was asleep, I would just stay asleep. Umm....yes. As usual you're missing the point.

 

Hope everyone's having a good weekend. Hey Hank - do you mind sharing why you went off of Xyrem?

 

Thanks all!



#15 sk8aplexy

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Posted 20 July 2013 - 08:37 PM

Idiopathic (for unknown reason) Central (brain and respiratory system miscommunicating) Sleep Apnea.  I breathe very shallow, too shallow in my sleep, I do not snore... 

As I said in the earlier post, perhaps I've injured some important spot; brainstem, nerve/s, diaghram? 

 

It's quite uncommon, except in heart failure there are 'mixed apneas' which are somewhere between Central and Obstructive.  About 5% all sleep disordered breathing cases involve Central Sleep Apnea.  Obstructive is the more, and most, common.  Mixed Apneas fall in the 30% range, I think I'd read...

 

VPAP ASV (Ventilator Positive Airway Pressure Adapt-Servo Ventilator) is meant specifically for Mixed and Central Apneas as it adjust more to how you actually breathe rather than blowing as 'strongly' continually (more like, it kicks into action when it catches that you're having an apnea -it is always blowing hard though).  It's a step up from, and newer than, the BiPAP (Bi-Lateral Positive Airway Pressure). 

 

A bit more of the (horror) story below:

I started with the CPAP, than right away went to BiPAP, then a 3 months later the VPAP ASV (3 sleep studies, no MSLT as was supposed to occur after the first).

The sleep lab (at a hospital, in a medium sized city) and especially, the neurologist (physicians assistant, I could never see the actual neurologist, and I did ask to...?), were not good (to put it bluntly).

I also had surgeries prior to this, septoplasty and turbinate reductions, to open up my nasal airway as one nostril was basically grown shut.

I'd had an injury to my shoulder and neck a couple years back, perhaps it relates directly?

It took walking entirely away from both that lab and that neurologist; in fact, I went to Mayo Clinic, were I was treated better and got the confirmations as well as discussions I'd been after (which was all that I was after).  The neurologist prior, had convinced me the breathing machines may do the trick.  She refused to perhaps believe I had Cataplexy, she knew nothing about Hypocretin, and said "what is that" when I asked her about it, following that up with "you should not read online, there's a lot of ..." jibber jabber or some word  (SIGH)...  Also she would get snappy with me, even at one point mentioning if I don't come back in 6 weeks ready to try the meds, that we'd discuss my license.!  By then, I was at Mayo...

That was an awful year, am glad to have moved mostly past, as I still have to vent on it now and again.

I use a 'Pulse Oxymeter' every now and then overnight, then download it to the PC and glance at how I'm doing, or how often I have apneas which cause a drop in my Oxygen Saturation level.  Having had a minimal AHI (Apnea Hourly Index) of 11 after the first study, then 9 months later it being an AHI of 22, I was heading down hill.

I don't seem to drop low, thankfully, I'll have an occasional drop into the 80's and remain in the mid 90's most the time; as long as it doesn't drop below 90 and especially under 88 for any extended (or much at all) time, I'm doing alright.  IMO. 

Everyone has apneas now and then, I've read a lot on it, if when an apnea matter is discovered and the AHI falls within the minimal category (less than 15 hourly) treatment should not be, necessarily, started; a lot can be done in terms of other avenues prior to getting on the machines.  I'm not telling anyone to, or not to, do anything.  That's what I've read in multiple places...

 

I get no where with docs though, nor quick and I have no money, nor any real interest after the crap I've been through.  That's not to say at all that they are all bad or that they can't help, in certain situations/circumstances, but I've been through a few ringers so I choose when and if, as necessary, need be.  I would not be here if it weren't for them, as I had 9/10ths of Pancreas removed at 4 months old, due to severe hyperinsulinemia hypoglycemia which went 'unnoticed' and considered epilepsy -until I was taken to Mayo Clinic as a last resort by my parents (who were frustrated and worried)...







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