CarlaWilS

Insurance Categorizing Narcolepsy Meds As "mental Health"

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Hi all! I'm new to NN and Narcolepsy in general. I was diagnosed in March and it really blindsided me. I didn't (and still don't) know much about N, but I never in my wildest dreams would have thought it was causing my extreme sleepiness.

 

In addition to this shock, I'm having a lot of trouble getting any prescription covered by my insurance. I'm covered by Anthem Blue Cross Blue Shield in Indiana and my contract has a benefit exclusion that prohibits coverage for anything they deem "mental health." Conveniently for them, they have categorized literally every medication that is commonly prescribed for Narcolepsy under the umbrella of "mental health." In my opinion, this is severely inaccurate, but that's a discussion for another post entirely. They won't even cover generic Methylphenidate or Modafinil, which are both listed as Tier 1 drugs in my formulary. I find it funny that they covered more than half of my sleep test, but once I'm actually diagnosed with something and need treatment, they pull coverage.

 

I tried a two-week sample of NuVigil, but didn't see drastic results so my doctor wanted to prescribe me the higher dose. This is when we found out it wouldn't be covered. We tried doing a prior authorization but they wouldn't even review it because of this benefit exclusion. My doctor sent in an appeal this week, so I'm waiting to hear my fate. Until then, I payed the full price for Methylphenidate because it was the least expensive to buy not covered and my doctor wanted me to be on something. I've been on it for two weeks and am less than thrilled by the results. It's very inconsistent and I'm lucky if it keeps me awake for the full 4 hours per dose. 

 

Has anyone else run into this ridiculous "mental health" issue? If so, how did you work your way around it? What meds were you able to get covered? This has been extremely frustrating and defeating and I hate it that the insurance company has the power to tell me and my doctor was is medically necessary.

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That's some bullcrap. Many anti-convulsants are used to treat mood disorders, so does that mean if you were epileptic, they wouldn't give you anti-seizure meds? That's some stupid reasoning for sure. Just because something can be used for mental issues, doesn't mean it has no broader applicability. I don't know if there's anything you can do though. If they don't cover the med, then they don't cover it. Is switiching insurance an option or is that something you get through work?

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Funny thing is that I'm taking Gabapentin at night, which is commonly used for seizure patients and that was almost completely covered. It almost seems like they specifically decided not to cover any medicines commonly prescribed for Narcolepsy. I'm on my mom's insurance still, but I'll probably be getting my own soon. Especially if Anthem doesn't accept my appeal. This will be my first time getting insurance for myself, and I just have to idea how to go about it and make sure I avoid this problem.

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I've been seen by a couple of Neurologists at a top notch world renown large facility.  From near the first instant that I began speaking with them (there were 2), completely not only were they quite rude in there demeanor towards me (as I assume had to do with what I was told) but said both, now quoting them, that "Narcoleptics brains are wired and function differently than that of a normal person" (I don't disagree entirely there; but it definitely seemed to limit their view, or maybe I should say limit their willingness to not have a shallow view of me, as they were so hesitant to go in any other direction/s of analyzing my health matters) and then I was also told (likely due to my resisting of the treatments which I've had no success with in the past and in part also related to that I don't feel enough is proven regarding them) that "antidepressants aren't that which kill the person, it's the person" (pertaining to suicide)...

 

And, I couldn't think of a more backwards place to live (within this country) than perhaps IN; I know it all too, too, well... ;-/

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I've been seen by a few Neurologists at a top notch world renown large facility.  From near the first instant that I began speaking with them (there were 2), completely not only were they quite rude in there demeanor towards me (as I assume had to do with what I was told) but said both, now quoting them, that "Narcoleptics brains are wired and function differently than that of a normal person" (I don't disagree entirely there; but it definitely seemed to limit their view, or maybe I should say limit their willingness to not have a shallow view of me, as they were so hesitant to go in any other direction/s of analyzing my health matters) and then I was also told (likely due to my resisting of the treatments which I've had no success with in the past and in part also related to that I don't feel enough is proven regarding them) that "antidepressants aren't that which kill the person, it's the person" (pertaining to suicide)...

 

And, I couldn't think of a more backwards place to live (within this country) than perhaps IN; I know it all too, too, well... ;-/

I understand trepidation about meds. Often times it does seem like posion is the cure they like to propose. But don't be completely closed off to trying new thigns either. Close-mindedness runs in both directions sometimes. Just a friendly reminder, not trying to dig you or anything. I have certainly had my own gripes with medical-pharma complex.

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No worries DeathRabbit. 

Edit-> The real point of that post was to just say, I think N is sort of considered 'more often than not' to be a sort of 'mental condition' even though it's autoimmune/brain related. 

One aspect to why I speak how I do so often, is that I feel that many are pressed and have limited time, are very anxious as well as perhaps unobservant within the realm.  That is to say that when you go down this road of trying to seek and/or find help, that it is easy to lose focus and/or to perhaps just skip over things, get sidetracked.  That for me occurred on my first actual journey down this single (relating to Nw/C) path, which I describe in a other recent 'horror' post.  It's hard and painful at times either way you go,  and one should not have a harder time after going down the road, especially for a long while; only one (you) can have insight into actually gauging where one is going and/or ends up... Hope that makes a tad bit of sense. <- End Edit   

I more than recognize my bitterness.  Sure, I know that I do, and/or may, go a bit overboard; but never to be harmful, ever.

And I also am very much in entire agreement as to close-mindedness going both directions, at times.

Having the health matters (complex ones) I've had, and the experiences I've had within the realm, I like to remain safe rather than sorry; that is not to say though that I've not tried medications, because I have and as I've mentioned in other spots, the benefits 'for me' have not outweighed the negative side effects.   A lot of that relates directly to headaches, rebound headaches and more headaches or respiratory madness; neither of, is ever fun...

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I haven't necessarily had problems with my neurologist (she tends to practice selective listening every now and then, which is annoying but hasn't caused any problems). I was hesitant to try Ritalin because of the bad side effects you hear about people taking it for ADD, so I understand what you're saying about not wanting to take a certain med. I've read about PWNs having success with Ritalin, but so far that hasn't been my experience. I think the most frustrating thing about all of this is that PWN react so differently to the available meds that I don't even know if NuVigil would work for me if I did get it covered. It would make our lives so much easier if insurance companies allowed you to try the available meds until one clicked for you. But it doesn't seem like they're in the business of making anyone's life easy.

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I haven't tried this yet, but I just lost my health insurance so I was looking into how I'll pay for my meds, and I found this website, goodrx.com. They have coupons you can bring to your pharmacy to get meds a lot cheaper. I don't know how it works, but it looks legit, and worth a try.

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I haven't tried this yet, but I just lost my health insurance so I was looking into how I'll pay for my meds, and I found this website, goodrx.com. They have coupons you can bring to your pharmacy to get meds a lot cheaper. I don't know how it works, but it looks legit, and worth a try.

I'll check that out! Thanks! There's another website, needymeds.com, that also has discounts. You have to meet requirements that the drug manufacturer sets, but if you do the process doesn't seem too difficult after that.

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I think only people with very mild Narcolepsies can be completely fixed by small stimulant doses or Provigil/Nuvigil. For those of us with more serious cases a pick me up just doesn't cut the mustard, and if you take enough to actually try to have it really help the side-effects and crash at the end make it zero sum gain.

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I think only people with very mild Narcolepsies can be completely fixed by small stimulant doses or Provigil/Nuvigil. For those of us with more serious cases a pick me up just doesn't cut the mustard, and if you take enough to actually try to have it really help the side-effects and crash at the end make it zero sum gain.

 

That is one thing I've been a little confused about; what would you consider mild Narcolepsy? I have experienced mild episodes of cataplexy, the worst being extreme tinglyness and weakness of my arms to the point where I could barely lift them. My legs were weak, too, so I sat down. I've been very lucky in that I've never fully collapsed, just had some localized weakness, head rushes, and slight knee dips (really hoping that doesn't progress to something worse). I experience HH as I'm falling asleep, but they're not scary, it's more frustrating because they'll "wake" me up even though I know I haven't actually fallen asleep yet. I've only experienced SP twice that I can recall. My most prominent symptom is EDS and muscle fatigue. I don't remember what it feels like to go through the day without feeling what I call "background sleepiness." I can feel alert and focused but there's a foggyness about me that I can never shake. At the worst of times it's a full body fatigue where all I can think about is wanting to sleep and I have the most overwhelming desire to at least sit down. I've never fallen asleep at work because I work in a kitchen with lots of sharp knives and corners so I don't let myself. I consider it a good thing to have that control because I know others don't, but that still doesn't make the overwhelming sleepyness any more bearable. During my sleep tests, my polysomnagram was normal but my MSLT showed a mean sleep latency of 3.1 minutes that my neurologist found very "interesting."

 

From what I've read of other PWN's experiences, I experience cataplexy, HH, and SP to a lesser degree, but I have no way to measure my sleepyness against theirs. I only know that I don't remember what it feels like to be normal. I don't remember what it feels like to be me. And the worst part is knowing that I probably won't feel that ever again.

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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.

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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.

 

Wow. That's a really good metaphor. I read somewhere that the exhaustion a PWN feels every day is comparable to the exhaustion a normal person would feel after being awake for 72 hrs. Living like that day to day, sometimes it feels like the tiredness stacks up from one day to the next, so even a relatively "good" day has a poor quality of life. It's like trying to erase a sleep debt by sleeping in on the weekends, it just doesn't work like that. 

 

I know what you're saying about feeling pretty good until you sit down. Some days it feels like I run myself ragged because I know if I let myself stop for just a moment and sit down, my body will immediately want to fall asleep. 

 

How do you cope from day to day? Apart from the medicine. I haven't been able to find any conclusive information on diets. I know a lot of people take scheduled naps, but that's not an option for me with my work schedule. I've also read that it helps to go to sleep and wake up at the same times each day. I'm trying to do that, but most days I'll let myself hit snooze or reset my alarm clock without thinking about it, then I wake up 30 minutes later mad at myself. Ugh. What are your best every day tips for a Narcolepsy newbie?

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No worries DeathRabbit. 

Edit-> The real point of that post was to just say, I think N is sort of considered 'more often than not' to be a sort of 'mental condition' even though it's autoimmune/brain related. 

One aspect to why I speak how I do so often, is that I feel that many are pressed and have limited time, are very anxious as well as perhaps unobservant within the realm.  That is to say that when you go down this road of trying to seek and/or find help, that it is easy to lose focus and/or to perhaps just skip over things, get sidetracked.  That for me occurred on my first actual journey down this single (relating to Nw/C) path, which I describe in a other recent 'horror' post.  It's hard and painful at times either way you go,  and one should not have a harder time after going down the road, especially for a long while; only one (you) can have insight into actually gauging where one is going and/or ends up... Hope that makes a tad bit of sense. <- End Edit   

I more than recognize my bitterness.  Sure, I know that I do, and/or may, go a bit overboard; but never to be harmful, ever.

And I also am very much in entire agreement as to close-mindedness going both directions, at times.

Having the health matters (complex ones) I've had, and the experiences I've had within the realm, I like to remain safe rather than sorry; that is not to say though that I've not tried medications, because I have and as I've mentioned in other spots, the benefits 'for me' have not outweighed the negative side effects.   A lot of that relates directly to headaches, rebound headaches and more headaches or respiratory madness; neither of, is ever fun...

Yea, I'll give anything a shot once. I'm currently trying out Vyvanse. It's looking like it's gonna be just as useless as the other stimmies I've been on, but hey, at least that helps me in my process of elimination. I'm taking 30 in the morning then 20 at lunch time. Trying to avoid peaking and crashing. We'll see how it goes. If it's still suckign after a few weeks, I'll knock it off. Gosh, I just realized, I really need to throw some old meds away. I've got enough stimmies and Xyrem on me that if someone broke into my house they'd prolly make off with about 15k street value of pharmaceuticals.

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Wow. That's a really good metaphor. I read somewhere that the exhaustion a PWN feels every day is comparable to the exhaustion a normal person would feel after being awake for 72 hrs. Living like that day to day, sometimes it feels like the tiredness stacks up from one day to the next, so even a relatively "good" day has a poor quality of life. It's like trying to erase a sleep debt by sleeping in on the weekends, it just doesn't work like that. 

 

I know what you're saying about feeling pretty good until you sit down. Some days it feels like I run myself ragged because I know if I let myself stop for just a moment and sit down, my body will immediately want to fall asleep. 

 

How do you cope from day to day? Apart from the medicine. I haven't been able to find any conclusive information on diets. I know a lot of people take scheduled naps, but that's not an option for me with my work schedule. I've also read that it helps to go to sleep and wake up at the same times each day. I'm trying to do that, but most days I'll let myself hit snooze or reset my alarm clock without thinking about it, then I wake up 30 minutes later mad at myself. Ugh. What are your best every day tips for a Narcolepsy newbie?

The schedule is a good thing. Also, 5-htp right before bed helps. Be careful with that if you are already on ati-depressants, though. It's a cheap OTC supplement that converts to serotonin, promoting SWS. Also, if you live in a medical MJ state, a small hit or two before bed has been shown to help improve sleep architecture. Just don't get full on blazed, as that just makes you stay in alpha all night.

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Again, I agree with you most entirely, DeathRabbit.!  

Not only does that go for sleep, but Cataplexy as well; and the last sentence you mention is very relevant.

Tried a 3 month course of 5-htp, L-theanine and Taurine, which ended around 5 to 6 months ago and it had some positive effects yet odd effects. 

It basically made my Cataplexy triggers vary in an odd way, to simply put it, I had more physical strength for longer during activities which trigger my Cataplexy often (that is to say that I could skateboard easier and longer before Cataplexy triggering from either landing some trick or someone's hollering at a trick I landed, both combining with exhaustion from skating -that was a good positive effect-) but I had more Cataplexy triggering from chit-chat or (an example) being asked for directions, or change, on the street (which was a bad negative effect).  'I' do not plan to take it again as it seemed to balance out.  Also, 5-htp may be not good if you have any heart valve matters, from what I've read...

For me, I think that being near 30 years old before realizing that 'sleep' was at the core of 'some' of my health matters, and having been so adjusted as well as used to it (tiredness/fatigue/foginess/dreaminess/weakness) being there; that I still just tolerate it as 'normalcy for me and am content with that'. 

In my teens and even most of my 20's I was very active (skateboarding, hiking, playing ice hockey), in a large part (with much thanks) that is due to staying at home and living a quite mellow (compared to many or more likely most peoples) lifestyle.  Throughout though I slept a lot of hours every night, missed and/or skipped many activities and chose to remain in the manner which I still basically, remain in to this day.  The Narcolepsy with Cataplexy is only a piece of it all though..

Although I have made progress in ways, the disease (seemingly and oddly 'for me') progresses (or has) and others emerge also; always in degrees of variation, from one thing to another and sometimes regressing and/or just varying.  Autoimmune/Central Nervous/Neurological/Respiratory/Cardio/Musculo/Skeletal systems all at play. Degenerative.?

Allergies and intolerances to food are definitely an element of it all, I believe anymore for me at least, as such has been a real struggle since I've caught onto it, for what it is, and can be.

So, food has been one of the more major things which has helped me, but it has taken years to figure out; plus I basically prepare and cook 'everything' that I eat, which is not cheap and influences in difficult ways a lot (eating out, traveling, participating socially, availability and convenience)...

Keeping a routine schedule does seem to help quite a bit. 

Avoiding both stress and anxieties are 'huge,' for me, as they definitely play into Cataplexy being 'more likely' to occur from the simple pleasures in/of life...

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I have a mild form. I have the "fog", daytime sleepness, irregular sleep patterns, and uncontrollable sleep attacks. No cataplexy (yet, *knock on wood*). A low dose of Armodafinil at 150mg does me just fine. I cycle off of it once or twice a week.

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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!"

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I have a mild form. I have the "fog", daytime sleepness, irregular sleep patterns, and uncontrollable sleep attacks. No cataplexy (yet, *knock on wood*). A low dose of Armodafinil at 150mg does me just fine. I cycle off of it once or twice a week.

 

Do you ever experience SP or HH? And I'm confused about how Cataplexy develops...I've read about people experiencing mild cataplexy that progressed to severe cataplexy (one good example is Julie Flygare, a narcolepsy advocate who wrote a book about her experiences). I talked to my neurologist about this because it seems like each time I experience a cataplexy attack, it's a little bit worse. They are still very mild and not very frequent, but it's disconcerting. She said that it probably won't progress further.

 

Now, my neurologist is a nice lady and all, but she hasn't been very helpful in giving me information about N. When she diagnosed me and I practically laughed in her face because I was so shocked, she didn't explain to me what N is or why I feel the way I do, she just gave me the diagnosis and sent me on my merry way. A month later in my follow-up appointment I understandably had a lot of questions, but I didn't leave with many answers. So I'm sorry if I ask a bunch of stupid or common-sense questions or if I need things to be spelled out because I don't know anyone with N and the person who should know the most about it hasn't been very forthcoming with information. 

 

That being said, DeathRabbit, I have no idea what a 5-htp is...The only before-sleep meds I know about are Xyrem, which I understand to be mainly for people with cataplexy, and Gabapentin, which my neurologist put me on to help me fall asleep (you'd think I would have no problem with that part...) because I have a lot of muscle pain and fatigue and many nights when I'm extremely tired, I'll start dreaming before I've actually fallen asleep (I consider these HH, but I don't know...) and my arm or foot will twitch in correspondence with something I'm doing in my dream and it will "wake" me up. It ends up taking me forever to fully fall asleep, even though I'm exhausted. So far the Gabapentin has helped with that, but I don't know if my quality of nighttime sleep is any better. I keep telling my neurologist that I wake up a lot at night and I think that makes a difference in how sleepy I get during the day (duh), but she keeps telling me that my polysomnagram was normal, so she doesn't think it's a problem.

 

Sk8aplexy, you've talked about being gluten-free. That's not really an option for me. As a pastry chef, I'm surrounded by things with gluten in them. I could give it up, but that's one of my non-negotiables. I'll cut back on gluten and sweets, but it's my life. I have to do some quality control eating :) Would you suggest eating fewer carbs? I also assume a high-protein diet would help give me more energy.

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Understandable, I definitely hear you and would think it only really a necessity if it was causing negative reactions, upon you.

For me, it had more to do with headaches from the sugars (now I stick to honey) and inflammation from the flours (there are many I can use), perhaps those mixed together more than not, as most the foods seem to...

As for cutting back on carbs and a high-protein diet for energy, sorry but I'm not real sure what to say.

Try one thing at a time, or go for it all at once?  But, give whatever you do some time to take effect. 

It was all mostly gradual for me over years and had to do with multiple elements, including dropping some weight, which I managed to do after deciding to really drop the gluten and dairy around 9 months ago (I'd begun seeing a D.O. who suggested and recommended both, and I trusted this guy due to his being very respectable as well as a long time doctor of my friends family).

For energy I consume fruit or spinach smoothies. 

I try not to eat a lot of meat, because I can easily slip into (as I did for many years) basically eating, way too much or, an all meat diet (unlikely to happen again though).

I eat a lot of Kale in salads, every day, as well as a lot of Guacamole!

Hope I don't sound discouraging.

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Not discouraging at all! I don't eat as well as I should, so this gives me an excuse to start eating better. I know I need to eat less sweets, I just can't give them up entirely! The smoothies sound like a good idea for breakfast, normally I eat a bowl of whole grain oatmeal with fruit, but I think it may be too heavy and cause me to crash a few hours later. A smoothie would be light and give me a good boost, which I could definitely use in the morning. Thanks for the suggestion!

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5-htp is usually harvested from herbs. Ever heard of tryptophan, the amino acid in meat that makes you sleepy? Tryptophan becomes 5-htp becomes serotonin, which promotes SWS and suppresses REM. It's for that same reason that antidepressants that inhibit serotonin reuptake are used for N management sometimes. I figure why do that when you can just directly supplement the serotonin and avoid all the side-effects of those pesky SSRIs, plus it's cheap, and as an herbal, it's OTC.

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I'll definitely look into that! Thanks for your help.

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Do you ever experience SP or HH? And I'm confused about how Cataplexy develops...I've read about people experiencing mild cataplexy that progressed to severe cataplexy (one good example is Julie Flygare, a narcolepsy advocate who wrote a book about her experiences). I talked to my neurologist about this because it seems like each time I experience a cataplexy attack, it's a little bit worse. They are still very mild and not very frequent, but it's disconcerting. She said that it probably won't progress further.

 

Now, my neurologist is a nice lady and all, but she hasn't been very helpful in giving me information about N. When she diagnosed me and I practically laughed in her face because I was so shocked, she didn't explain to me what N is or why I feel the way I do, she just gave me the diagnosis and sent me on my merry way. A month later in my follow-up appointment I understandably had a lot of questions, but I didn't leave with many answers. So I'm sorry if I ask a bunch of stupid or common-sense questions or if I need things to be spelled out because I don't know anyone with N and the person who should know the most about it hasn't been very forthcoming with information. 

 

That being said, DeathRabbit, I have no idea what a 5-htp is...The only before-sleep meds I know about are Xyrem, which I understand to be mainly for people with cataplexy, and Gabapentin, which my neurologist put me on to help me fall asleep (you'd think I would have no problem with that part...) because I have a lot of muscle pain and fatigue and many nights when I'm extremely tired, I'll start dreaming before I've actually fallen asleep (I consider these HH, but I don't know...) and my arm or foot will twitch in correspondence with something I'm doing in my dream and it will "wake" me up. It ends up taking me forever to fully fall asleep, even though I'm exhausted. So far the Gabapentin has helped with that, but I don't know if my quality of nighttime sleep is any better. I keep telling my neurologist that I wake up a lot at night and I think that makes a difference in how sleepy I get during the day (duh), but she keeps telling me that my polysomnagram was normal, so she doesn't think it's a problem.

 

Sk8aplexy, you've talked about being gluten-free. That's not really an option for me. As a pastry chef, I'm surrounded by things with gluten in them. I could give it up, but that's one of my non-negotiables. I'll cut back on gluten and sweets, but it's my life. I have to do some quality control eating :) Would you suggest eating fewer carbs? I also assume a high-protein diet would help give me more energy.

CarlaWils, hi, my sleep doctor & neurologist statements both do NOT concur with your neurologist comment that she doesn't think u waking up a lot at night is a problem (since your polysomnagram is normal). I am new to NN & only diagnosed w N w/out cataplexy for 2 months (though I had misdiagnoses & debilitating EDS for many years). My polysomnagram was also "normal" but verified I woke up excessivley all night long. It took ~ 9 hrs for me to get 6 hrs of sleep, and that sleep was very disturbed. My MSLT confirmed the N dx, as I immediately enter REM sleep with naps.

My sleep dr stated that we needed to treat both the disturbed sleep pattern in addition to the EDS in order to improve my ability to function and improve my health. (c meds below that r working ok for me- lunesta & stimulant). Also, upon learning of my N diagnosis and that i wake up frequently at night, my neurologist (another specialist I've been seeing for yrs 4 severe migraines) also agreed that it was critical for me to get consitent refreshed sleep at night, as that could be a key trigger of my migraines (my migraines worsened from 1-4/ month 10 yrs ago to daily-weekly migraines 4 me for last 4+ years; very debilitating.). My neurologist also reiterated something (basic) well supported in medical literature -- that receiving quality sleep at night is critical for general body repair & health.

Carlawils- Also, anyone who has had a baby & experiences the resulting distrubed sleep of getting up w the infant nightly for months can tell u the severe impact sleep depravation has on an ability to function both in terms of clear thinking & physical fatigue in "healthy" people. I don't want u to alienate your doctor, but if she had a child, she may be able to relate to this analogy. (Unless she is one of the rare ones who doesnt have sleep deprecation issues). I'm not advocating to change your doctor without dialogue, but waking up a lot at night IS a problem if u r not getting refreshed sleep. In my initial consult w sleep dr b4 sleep study conducted, I told him that I wake up at least 6 times a night on average of which I am aware. Sleep dr said that is "a lot". (I thought this was normal...) I sometime woke up much more... Perhaps u need to tell the dr the # of times u wake nightly.

To try to improve my abiltiy to sleep, sleep dr continued a previous rx i was taking of lunesta with a change from taking lunesta 3mg, four nights/wk to taking it nightly at same 3 mg dose. Nightly lunesta plus EDS meds & maintaining a very new pretty strict sleep-wake rotuine (w fairly consistent wake times - requires 2 alarms & taking EDS med 1 hr before i wake up) have been effective in me getting sound sleep 4 the 1st time in years!!!

- Note 1: i have only been taking this combo for 2 months so far, and I MUST set alarm 1 hr b4 wake time & take EDS med to get up & be able to function. The alarm is counted in my 8 hrs sleep. I occasionally turn off alarm w/out taking EDS med & keep sleeping, so I also use a 3rd alarm-kitchen time as a backup now. It has an annoying beep. I bought 2 if one fails 2 make me take meds....

- note 2: I have also taken 3 mg melatonin at bedtime for years bec it helped me become sleepy. Without it, I have had difficulty falling asleep (I dispense my meds in weekly containers so I can keep up). My hubby also notices that I am much more alert if I don't take it and a night owl without it. With it, I am usually sleepy in 45 min. after taking.

So lunesta nightly w EDS med is currently working for me. (not perfect, but much better). As background, my sleep dr wanted to continue the lunesta b4 trying others (eg, xyrem) bec 1- I was still taking it, and 2-- had ONCE been somewhat effectively 4 me to sleep on nights I took it prior to N dx. (I chose 2 take it before the days that were most imp in the week for me to function; took only 4 nights/week bec of tolerance concerns). A 2nd Fyi- About a year ago (b4 N diagnosis & EDS meds), my dr prescribed lunesta nightly for 3 months to see if that would help; it did not improve overall EDS after 3 mo & i was waking up frequently at night over the last year regardless of whether I took lunesta 4 or 7 nights weekly. (All my docs know @ all meds & coordinate). He also wanted me to continue the 3 mg Melatonin (I didn't ask if he thought effective or bec. It would have been a confounding change to discontinue.). He did say if I thought it worked, it was worth taking (natural). My dose is 3 mg -I'd advise asking dr if u take more.

Since starting meds for EDS (1st nuvigil, now adderall bec of nuvigil rash), & taking lunesta nightly, i sleep like a rock!!! This was not at all the case with me taking lunesta b4 daytime EDS meds were added. I am not sure how long this will last (only on month 2 now ....) but my dr references studies that show that lunesta taken longterm does not show a tolerance buildup. I've been taking lunesta at least 4 nights/wk for about 4-5 YEARS. Lunesta did 'stop' being effective for me in the last year, but i was not taking it nightly. I looked for studies, and only found one that said pateints did not show a tolerance effect after 6 months taking nightly.

i currnetly still have more brain fog than I'd like compared to a former verison of me, but dr said that can be effect of long term sleep depravation & something we need to try to improve. I also now function w/out the obsession of taking a nap all day... It's amazing. Going off nuvigil for a few days (due to rash) & b4 I started adderall was so depressing. I again experienced the overwhelming EDS to where its difficult to function, even w taking lunesta.

Fyi--Insurance will try to have u take ambien/zolpidiem first b4 lunesta bec of cost. I hallucinate & perform tasks w-out memory (hubby confirms this) on ambien, so can't take. Ambien CR is probably much more effective than ambien if u can take it (only could sleep 5 hrs on ambien, wh isn't enough 4 me). I have a lot of negative (rare-unusual) side effects from numerous meds. I can take lunesta well it seems.

Good luck!

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CarlaWils, hi, my sleep doctor & neurologist statements both do NOT concur with your neurologist comment that she doesn't think u waking up a lot at night is a problem (since your polysomnagram is normal). I am new to NN & only diagnosed w N w/out cataplexy for 2 months (though I had misdiagnoses & debilitating EDS for many years). My polysomnagram was also "normal" but verified I woke up excessivley all night long. It took ~ 9 hrs for me to get 6 hrs of sleep, and that sleep was very disturbed. My MSLT confirmed the N dx, as I immediately enter REM sleep with naps.

My sleep dr stated that we needed to treat both the disturbed sleep pattern in addition to the EDS in order to improve my ability to function and improve my health. (c meds below that r working ok for me- lunesta & stimulant). Also, upon learning of my N diagnosis and that i wake up frequently at night, my neurologist (another specialist I've been seeing for yrs 4 severe migraines) also agreed that it was critical for me to get consitent refreshed sleep at night, as that could be a key trigger of my migraines (my migraines worsened from 1-4/ month 10 yrs ago to daily-weekly migraines 4 me for last 4+ years; very debilitating.). My neurologist also reiterated something (basic) well supported in medical literature -- that receiving quality sleep at night is critical for general body repair & health.

Carlawils- Also, anyone who has had a baby & experiences the resulting distrubed sleep of getting up w the infant nightly for months can tell u the severe impact sleep depravation has on an ability to function both in terms of clear thinking & physical fatigue in "healthy" people. I don't want u to alienate your doctor, but if she had a child, she may be able to relate to this analogy. (Unless she is one of the rare ones who doesnt have sleep deprecation issues). I'm not advocating to change your doctor without dialogue, but waking up a lot at night IS a problem if u r not getting refreshed sleep. In my initial consult w sleep dr b4 sleep study conducted, I told him that I wake up at least 6 times a night on average of which I am aware. Sleep dr said that is "a lot". (I thought this was normal...) I sometime woke up much more... Perhaps u need to tell the dr the # of times u wake nightly.

To try to improve my abiltiy to sleep, sleep dr continued a previous rx i was taking of lunesta with a change from taking lunesta 3mg, four nights/wk to taking it nightly at same 3 mg dose. Nightly lunesta plus EDS meds & maintaining a very new pretty strict sleep-wake rotuine (w fairly consistent wake times - requires 2 alarms & taking EDS med 1 hr before i wake up) have been effective in me getting sound sleep 4 the 1st time in years!!!

- Note 1: i have only been taking this combo for 2 months so far, and I MUST set alarm 1 hr b4 wake time & take EDS med to get up & be able to function. The alarm is counted in my 8 hrs sleep. I occasionally turn off alarm w/out taking EDS med & keep sleeping, so I also use a 3rd alarm-kitchen time as a backup now. It has an annoying beep. I bought 2 if one fails 2 make me take meds....

- note 2: I have also taken 3 mg melatonin at bedtime for years bec it helped me become sleepy. Without it, I have had difficulty falling asleep (I dispense my meds in weekly containers so I can keep up). My hubby also notices that I am much more alert if I don't take it and a night owl without it. With it, I am usually sleepy in 45 min. after taking.

So lunesta nightly w EDS med is currently working for me. (not perfect, but much better). As background, my sleep dr wanted to continue the lunesta b4 trying others (eg, xyrem) bec 1- I was still taking it, and 2-- had ONCE been somewhat effectively 4 me to sleep on nights I took it prior to N dx. (I chose 2 take it before the days that were most imp in the week for me to function; took only 4 nights/week bec of tolerance concerns). A 2nd Fyi- About a year ago (b4 N diagnosis & EDS meds), my dr prescribed lunesta nightly for 3 months to see if that would help; it did not improve overall EDS after 3 mo & i was waking up frequently at night over the last year regardless of whether I took lunesta 4 or 7 nights weekly. (All my docs know @ all meds & coordinate). He also wanted me to continue the 3 mg Melatonin (I didn't ask if he thought effective or bec. It would have been a confounding change to discontinue.). He did say if I thought it worked, it was worth taking (natural). My dose is 3 mg -I'd advise asking dr if u take more.

Since starting meds for EDS (1st nuvigil, now adderall bec of nuvigil rash), & taking lunesta nightly, i sleep like a rock!!! This was not at all the case with me taking lunesta b4 daytime EDS meds were added. I am not sure how long this will last (only on month 2 now ....) but my dr references studies that show that lunesta taken longterm does not show a tolerance buildup. I've been taking lunesta at least 4 nights/wk for about 4-5 YEARS. Lunesta did 'stop' being effective for me in the last year, but i was not taking it nightly. I looked for studies, and only found one that said pateints did not show a tolerance effect after 6 months taking nightly.

i currnetly still have more brain fog than I'd like compared to a former verison of me, but dr said that can be effect of long term sleep depravation & something we need to try to improve. I also now function w/out the obsession of taking a nap all day... It's amazing. Going off nuvigil for a few days (due to rash) & b4 I started adderall was so depressing. I again experienced the overwhelming EDS to where its difficult to function, even w taking lunesta.

Fyi--Insurance will try to have u take ambien/zolpidiem first b4 lunesta bec of cost. I hallucinate & perform tasks w-out memory (hubby confirms this) on ambien, so can't take. Ambien CR is probably much more effective than ambien if u can take it (only could sleep 5 hrs on ambien, wh isn't enough 4 me). I have a lot of negative (rare-unusual) side effects from numerous meds. I can take lunesta well it seems.

Good luck!

 

Yeah, I thought it was odd for her to completely brush it off because that was the reason I went to see her in the first place! In my first appointment I told her I woke up about 5 times each night and she agreed that it was a lot. I even told her about my muscle pain and fatigue, which I thought was caused by my insufficient sleep. She initially had me take medicine for restless legs because I experience restlessness when I get really tired at night but haven't gone to bed yet. After taking various doses of that medicine for 6 months without any results, she finally agreed to have me do a sleep study. My polysomnagram even shows "frequent awakenings" but I still got 6 hrs of sleep so it was considered normal. I don't understand that because we hear all of our lives that 8 hours of sleep is necessary for proper functioning. I even tried to ask her if some issues I have with hormonal regulation could be caused in part if not all by insufficient night-time sleep since so much restorative and regulative stuff happens while we sleep. Again, she pretty much brushed it off. 

 

I'm doing a month-long trial of the Gabapentin and then I have a follow-up appointment, so if I haven't noticed much of a change I'll definitely bring it up again. I'm beginning to learn how forceful I need to be with doctors if I want them to consider something I'm concerned with seriously. So far, the Gabapentin is working alright. Some nights I sleep like a rock (but then feel like I've been hit with a rock when I try to wake up) and some nights I still wake up, but not as much, so hopefully by the end of the month I'll see more of an improvement. Thank you so much for your advice.

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