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Insurance Categorizing Narcolepsy Meds As "mental Health"


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#41 cmanbrazil

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Posted 24 June 2013 - 11:58 AM

I don't think cataplexy is necessarily an indicator of how severe a PWNs case is. Almost everyone on this board is a pretty bad case, I'd say. We're all here because nothing has quite done the trick completely, so we need to vent and share treatment suggestions and mitigation strategies. Most definitions of narcolepsy mention no mental handicap beyond what a person who is tired would normally go through. But for us rough cases, we know that's patently untrue. I have been exhausted previous times in my life  prior to N and never experienced anything like the stupor I get sometimes. It's like being drunk, high, and sick all at the same time. And it though it's usually accompanied by fatigue, sometimes I'll have a fairly decent energy level and I won't think I'm impaired until I sit down and try to concentrate and realize I can't hold on to even the simplest of concepts. And the impairment is never completely gone. Even on clear days, sometimes I'll actually get even more depressed because I'll realize how much I've forgotten and how I've lost the knack for deductive reasoning. I think being in a fog of some sort or another 90% of the time means that my neural networks are trashed, and even the 10% of clear-headedness I get is still impaired. It's like if you lived in a city that was being constantly bombarded by artillery. Even if the bad guys lay off for a day, the buildings they've shot up are still rubble, and a brief interregnum is not gonna allow time for reconstruction.

 

 

I don't think cataplexy is necessarily an indicator of how severe a PWNs case is. Almost everyone on this board is a pretty bad case, I'd say. We're all here because nothing has quite done the trick completely, so we need to vent and share treatment suggestions and mitigation strategies. Most definitions of narcolepsy mention no mental handicap beyond what a person who is tired would normally go through. But for us rough cases, we know that's patently untrue. I have been exhausted previous times in my life  prior to N and never experienced anything like the stupor I get sometimes. It's like being drunk, high, and sick all at the same time. And it though it's usually accompanied by fatigue, sometimes I'll have a fairly decent energy level and I won't think I'm impaired until I sit down and try to concentrate and realize I can't hold on to even the simplest of concepts. And the impairment is never completely gone. Even on clear days, sometimes I'll actually get even more depressed because I'll realize how much I've forgotten and how I've lost the knack for deductive reasoning. I think being in a fog of some sort or another 90% of the time means that my neural networks are trashed, and even the 10% of clear-headedness I get is still impaired. It's like if you lived in a city that was being constantly bombarded by artillery. Even if the bad guys lay off for a day, the buildings they've shot up are still rubble, and a brief interregnum is not gonna allow time for reconstruction.

 

 

Yeah I think the severity just depends if a IED went off in your orexin system or if it was firebombed. I'd hazard a guess if they autopsied my brain, that part would all be dead/scarred tissue.

 

EDIT: I know this is going to sound really elitist, and I don't mean it that way. I think just as an average IQ can be boosted by drugs like the Vigils (and even the stimmies to some degree) to an above-average level, if you have an above-average IQ, N can bust you down to the average level with brain fog. I was never a genius, but I did graduate Magna Cum Laude, adn that was after N already was taking effect. I used to have an IQ of probably 135-140. Not close to a genius or anything, but nice enough that I didn't have to try to hard at thinking on thigns that others struggled with. Now I'd say on my good days, I maybe manage 120, and on bad, it's probably as low as 105. I sometimes wonder if this was a pride goeth before fall thing. I don't think God is vengeful and petty, but maybe he is and he was like "I'll teach this arrogant ass mother*BEEP*er a lesson. Bam, Narcolepsy beotch! How's that brain work now, you self-righteous prick!"

 

I too have Narcolepsy as well as Sleep Apnea.  I think my Narcolepsy probably started in High School. It's hard to tell at times depending on how severe it is and what you are trying to accomplish.  I know in high school I was always bored and tired until after school, but I thought that it was because my school sucked. In college I learned that i could learn vast amounts of information quickly, which compensated for my inability to focus on normal days.  I also loved college because I could lay around and daydream a lot. 

 

I agree with Deathrabbit, that intelligence can compensate for ones inability to focus for long periods of time or without a lot of stimulation.  However, it caught up to me, and now that I am forty six, it feels like an unbearable shackle.  I live in a foggy world, constantly forgetting things, and struggling to focus long enough to complete paperwork, deal with bills, etc.  I am better the more I can keep moving.  I do better in meetings when I am constantly talking, but I can't sit quietly and focus.  I live reading short articles on google news, etc. while trying to pay attention to a meeting.  Now I am listening to a conference call, writing this response, and watching Limitless - I am the main character- at the same time.  I wish I was bragging, but I need to do this to stay awake.

 

All my doctors want to do is give me drugs in the 15 minutes they have to spend with me. Nuvigil really didn't work.  I refuse to deal with the cost of X.  However, I will need to try something else, because I feel my opportunities sleeping away.



#42 Hank

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Posted 24 June 2013 - 12:20 PM

Your post sounds like I could have written it about myself. I don't have sleep apnea but I do have Cataplexy. Like you, I have dragged myself through and revved myself up.

I was on Xyrem for 7 months. Although I could not tolerate it long term, I am still benefiting from having been on it. My EDS is very manageable and I now make it through most days without feeling it at all.

I take trazadone at night to assure a decent night sleep. Without it, my night sleep is soooo interrupted and wrecks me the next day.

Adderall helped me. Since Xyrem, I no longer take any stimulants, other than morning coffee.

What are you doing with "lifestyle adjustments" like sleep schedule, naps, diet, exercise, stress management/relaxation. I know those were very difficult for me to manage when my life was on a roller coaster of insomnia/fragmented sleep at night and sleepiness during the day.

Exercise after work helped me a lot- mostly to sleep at night and to stay awake until bed time.

I hope you find something that works for you. It is trial and error. Just keep doing what works and eliminate things that do not.

#43 cnlmustard

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Posted 13 July 2013 - 05:22 PM

Yeah DeathRabbit has the depressive side described perfectly. I tried to do it in a poem I once wrote for the network. But he nailed it.

 

I experianced the opposite effect with "IQ" from meds. I used to be quiet, inhibited, never spoke up. I stagnated in a large company, and never tried any thing new. When I started on Ritalin 14 years ago, I became super-dude! No more introverted shy guy. I was alive for the first time in my life, and was like the guys in the commercials for the Army. "We get more done in a morning than most people do in one day, before most people have even had thier first cup of coffee" Or something like that. I've acheived things I'm proud of, and have made a differance in many other peoples lives since then.

 

I can focus on a complex task like a laser beam and tear it up like nobody's business. But I absolutely can not multi task! Single focus only. It's not like I'm wired up like a coke junkie, I just feel very aware and alive, instead of living in the foggy daily stupor. I would ask other people if I seemed edgy or hyper, and no one thought I was. My family were glad to see I participated like a "normal" person finally.

 

On the inside, it feels very liberating and exciting. I'm only saying this, not for ME, but because I'm trying to tell anyone who wants to give up, that they should CONTINUE the quest for climbing out of the soup of drowsy senility fog. It is WORTH figuring out whatever will work for any of us to get there, because it feels great! I sleep normal (used to sleep like dead meat), no crash at night, have dreams, I can nap at will, drive at night, work in artificial light without nausea, and stay awake through movies!

 

My concoction is Ritalin, Topamax, Valium, and Antivert, which has me almost like a totally "normal" person now. It's an incredible feeling, but I fought hard every step of the way to get there! I've spent a lot of $$$ on doctors, tests and meds. over the years. But it's funny now, sometimes I'll ask my wife about something and say, "is this what normal people experiance?" Because I really didn't know before what normal felt like.



#44 sk8aplexy

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Posted 13 July 2013 - 06:09 PM

I don't believe much in a normal anymore, in my mind it's a sort of an in-existent, yet too common, condition (that may make no sense to any other?)...

 

For a while there, I was describing it all sort of like this.  I'd say this more or less, still, fits my general pattern. 

Experiencing perhaps on maybe 1 out of each 10 days or so, feeling for a few hours like I was both physically and mentally strong, being energetic and focused.

The common feeling though was/is being physically weak and mentally focused, but mentally fragile or as though I am on edge when (not over stimulated) weighed upon (pressured/crowded/tugged).

To have both the mental and physical strength with energy at the same time, is rare, it may be one or the other briefly.

To push through either a mentally challenging task or a physical task, when there isn't strength from both, requires draining the one with strength while over-draining the already weak one.

When I can remain steadily stimulated, with some task that isn't tedious or too repetitive, or when I'm with one to two or three others doing some activity which is stimulating (but not too draining); I am able to maintain my energy levels much longer than say, when I'm not stimulated, as that is immediately when it all hits.

Each time, regardless it seems, when I begin to actually feel strong and then think that I can act (or continue acting) on it, very quickly I'm struck down in some manner.

Struck down by a headache, a grouchy/snobby/uninterested/intense attitude/demeanor, a strong intense need to lay down or actually fighting to the point my eyes spasm and I'm hunched over trying to maintain whatever I'm doing, interference from a cataplexy episode, endless yawning and/or inability to focus/concentrate/participate, etc...

It's a vicious cycle or pattern, which seems to vary and have no, real fix.  Battling it, is exhausting, I do like though to remain attentive (however, much, possible).

 

I'm not sure if I'm perhaps lucky to feel mentally strong typically, or if (which, my guess is) it's more that I just don't have many pressures and am able to just, be, for the most part, for now (which I'm thankful for). 

I don't smoke (I have somewhat in the past, but never much), drink or take meds.

I have crazy allergies and sensitivities, with headaches/breathing troubles/body aches all resulting from occasional basic consumption of many everyday common foods/drinks (dairy, certain sugars and flours).

IDK



#45 cnlmustard

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Posted 15 July 2013 - 09:39 PM

Yeah, maybe not "normal, but just when you feel good, and you make one of those breakthroughs, and you pray it holds. I do absolutely HAVE to take a afternoon nap some days, (or else keep looking at every couch and sofa like some it's some hot bikini model I'm walking past), but that's not a bad trade off. Physical endurance has never ever come back, so I guess I forgot I ever had that! 

 

Getting back to topic, maybe this means something; my insurance last year all of a sudden wanted to block my ritalin, because they said since I'm over 25 I can't have it, even if for ADD. Some new law. Well I'm 55. My doctor had to send them the 14 year old MSLT lab results to prove it was for narcolepsy, for them to release it again.



#46 DeathRabbit

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Posted 15 July 2013 - 10:32 PM

I do absolutely HAVE to take a afternoon nap some days, (or else keep looking at every couch and sofa like some it's some hot bikini model I'm walking past)

 

I lol'd IRL