CarlaWilS

Insurance Categorizing Narcolepsy Meds As "mental Health"

46 posts in this topic

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.

DeathRabbit, I agree about the pesky SSRI side effects. Do you have any concerns that the 5-htp is not "regulated" pharmacologically as compared to SSRIs? Also, are you aware if there are 'withdrawal' side effects from stopping 5-htp or if you need a titration process to stop it as often advised for stopping a SSRI? I realize this may be just your opinion or experience. I haven't researched 5-htp yet, and may need to look for other threads @ this on this site or others for these questions. Thx for your input!

Note I am not a fan of the drug regulation process that now exists for several reasons (ex- the restrictions that can be put in place to medical access); but, I do like knowing there are standardized quality control measures and recognize the importance of knowing the content of the meds. However, I am not a pharmacologist, pharmacist, or physician (etc) & may not recognize an ingredient 'problem' unless I know it is one I cannot take.

Fyi-- I'll be sure to talk w my doc 1st if I were to pursue taking or changing any meds. I have found my docs support both prescription and OTC meds. For ex, all docs I have seen over the years (primary care, neurologist, endocrinologist) have supported me taking 3 mg of melatonin bec I notice a significant difficulty in my ability to fall asleep if I don't take it. (I become a "night owl" without it, which doesn't work in my world.). This is true even with taking a sleep prescription.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

DeathRabbit, I agree about the pesky SSRI side effects. Do you have any concerns that the 5-htp is not "regulated" pharmacologically as compared to SSRIs? Also, are you aware if there are 'withdrawal' side effects from stopping 5-htp or if you need a titration process to stop it as often advised for stopping a SSRI? I realize this may be just your opinion or experience. I haven't researched 5-htp yet, and may need to look for other threads @ this on this site or others for these questions. Thx for your input!

 

Well that is the rub with supplements. Could be of variable quality, not being gov't regulated. I usually opt to go for one of the vitamin-store brands. Costs 4x as much, but I feel much less likely to be taking a sugar pill or a capsule full of cancer rabies. However, I'm not really sure how "well-regulated" pharma manufacturing really is, considering how many generics get pulled all the time for having impurities or other issues. After all, our government is pretty ineffectual at regulating stuff, anyway, due to bribery and general incompetence. As for withdrawal, I've stopped and started it several times. In fact, some nights if I'm already sleepy, I don't even take it. And I definitely know SSRI withdrawal. Headaches, psychic brain lightening (my name for brain zaps), nausea, malaise, almost any other bad symptom you can imagine. Of course, I was on my SSRI for years, and it was Paroxetine which is now widely regarded to be the most side-effect inducing and withdrawal causing SSRI. So that made my withdrawal hell. Finally had to put me on fluoxetine, a weaker SSRI to wean me down. Naturally, though, no one told me that it was addictive when I started taking it. I was assured it was "non-habit" forming. SSRI discontinuation syndrome and side effects have finally gotten enough widespread press though that more doctors are aware of it and big pharma has been forced to acknowledge its existence, despite their earlier efforts to suppress earlier studies showing these issues. SSRI discontinuation syndrome has been cropping up in research and trials since the late 90s, but only within the past 3 or 4 years has it become widely accepted fact.

Share this post


Link to post
Share on other sites

Well that is the rub with supplements. Could be of variable quality, not being gov't regulated. I usually opt to go for one of the vitamin-store brands. Costs 4x as much, but I feel much less likely to be taking a sugar pill or a capsule full of cancer rabies. However, I'm not really sure how "well-regulated" pharma manufacturing really is, considering how many generics get pulled all the time for having impurities or other issues. After all, our government is pretty ineffectual at regulating stuff, anyway, due to bribery and general incompetence. As for withdrawal, I've stopped and started it several times. In fact, some nights if I'm already sleepy, I don't even take it. And I definitely know SSRI withdrawal. Headaches, psychic brain lightening (my name for brain zaps), nausea, malaise, almost any other bad symptom you can imagine. Of course, I was on my SSRI for years, and it was Paroxetine which is now widely regarded to be the most side-effect inducing and withdrawal causing SSRI. So that made my withdrawal hell. Finally had to put me on fluoxetine, a weaker SSRI to wean me down. Naturally, though, no one told me that it was addictive when I started taking it. I was assured it was "non-habit" forming. SSRI discontinuation syndrome and side effects have finally gotten enough widespread press though that more doctors are aware of it and big pharma has been forced to acknowledge its existence, despite their earlier efforts to suppress earlier studies showing these issues. SSRI discontinuation syndrome has been cropping up in research and trials since the late 90s, but only within the past 3 or 4 years has it become widely accepted fact.

Thanks Rabbit. Ive learend the hard way to now ask a lot of questions B4 taking any new med -esp a SSRI- from my horrible SSRI discontinuation experience from Cymbalta (prescribed for me b4 my N dx for presumptive fibromyalgia). It's critical to know not only the side effects when chossing to take a med, but what can happen when you discontinue. I also now ask the same ?s to my pharmacist before I take a medication; the answers are usually more comprehensive from the pharmacist.

Cymbalta was ineffective for me in proving more energy or improved general feeling. After a yr I wanted to discontinue to not be on any meds I didn't need. The dr prescribed discontiuation schedule prescribed was too abrupt for me (after taking 60 mg for a yr, take 30 mg for 2 wks then stop). He prescribed low dose celexa to get me thru the cymbalta dicontinuation. There really needs to be more provider awareness about SSRI discontinuation. i have shared my experiences with my docs to try to better inform them. Luckily my SSRI discontinuation didn't include the brain zaps; i hope yours stopped. I've read they r terrible, can continue long after discontinuation, and at one time not believed to be a SSRI discontinuation symptom, but were thought to be a psychiatric problem. (!!!). My SSRI discontinuation caused excessive anxiety and unusual emotional swings to an extent that I never had prior to the SSRI! Luckily, the extreme symptoms subsided for me, but the experience was hell.

Share this post


Link to post
Share on other sites

Is it not beyond odd and a bit disconcerting that one of the withdrawal side-effects of these SSRI's, is in fact: Cataplexy, or to be more specific using the words used by the top notch Dr. in Narcolepsy, 'Status Cataplecticus'...    These meds are to be used lifelong, if they benefit you; if the meds do not, the recommended course is to get off of them (also the words of the above Dr. -whose name I'd rather not mention but you most all, likely, know of him).

 

The following is only 'my own opinion' and I recognize that this may sound once again bitter and/or paranoid.

I ask, please recognize such 'again it's only my own opinion' and please also 'agree to disagree' if you choose to. 

I am not telling anyone to, or not to, do anything; nor am I trying to start any tantrum...

 

I've not tried many of the SSRI's and really have no (0) desire to try any other/s, I may be stubborn and I am strict with what I will try anymore, at this point in time; for what I feel is good reason.

In a larger part that reason, specifically has to do with how susceptible and/or easily I get severe headaches alone; but as well as there are so many other 'no fun' health matters which relate (some I've experienced) insomnia, rashes, franticness/nervousness/respiratory, erectile disfunction/impotence, worse Cataplexy (that's just some of the possibilities)...

Having adjusted to Cataplexy over my lifetime, so far, I'll live with it and refrain from what it limits me from doing (I know that may sound beyond stubborn); such is not always so easy but from what I've tried none has benefited me.  5-htp did something, but there was no real gain.  Xyrem, I unfortunately can not try due to respiratory matters...

The nasal 'orexin' spray is something I may be open to in the future when such is perhaps available.

It comes down to 'for me' needing more convincing of safety along with longevity, and definitely more assuring data/studies/research.

Who knows, maybe 20 years down the road there will be available stem-cells (that Dr. again, mentioned such) or maybe some other more so 'natural' thing will appear (5-htp is at least an 'amino acid' found in an african plant root -I'm not planning to take it again though, partly due to the 'heart valve' possible risk, considering I may have related matters which such would not be good upon-). 

Edit -> Just came across this, not that it's for us or even people yet but - "Researchers cure epilepsy in mice using brain cells" [May 5, 2013]:

http://medicalxpress.com/news/2013-05-epilepsy-mice-brain-cells.html  <- End Edit

Be aware (that's my main point I guess).

For shizzle (?), they're growing ears made from calf cells and Nanoparticles that ‘Hears’ Radio Frequencies!  http://www.wired.com/design/2013/05/3-d-printed-ear-hears/

 

Please I ask that you don't quote, and/or copy 'n paste, my words here. Thanks and Good Luck out there.

Share this post


Link to post
Share on other sites

SSRIs should not be a lifelong treatment for sure. I'd say any longer than a year and you're dancing with the devil. And yeas, many false positive N diagnosis have come out of the fact that if you discontinue after a really long time, you can get a REM rebound that takes months to clear up.

Share this post


Link to post
Share on other sites

Great comments.  Quite a way up the page cloudtalk mentioned goodrx.com for discount coupons on meds.  I found their coupons are not always accepted.  And Cloudtalk wondered about paying for meds without insurance.  Just FYI - the short acting Ritalin (methyphenidate) at Sams Club is $4/mo on their generic list which could be less than an insurance co-pay.  You do not have to join to use the pharmacy. 

 

Dr. Mignot at Stanford also has an article published for docs and patients at http://med.stanford.edu/psychiatry/narcolepsy/articles/Neurotherapeutics20102.pdf

which includes his comments about the various stimulants and mentions the assumption (evidently not totally proven) that they all basically work by raising dopamine in the brain.  He also points out the amphetamines (including Ritalin) are water soluble so readily absorbed and can therefore be given in smaller doses.  The vigils are not water soluble so you need much larger doses (plus they cost a fortune).  So if cost is a barrier, lower cost generic methylphenidate could be worth considering.

Share this post


Link to post
Share on other sites

Trazadone has been outstanding for me as a medication to help me sleep.

Lunesta and Sonata were like taking Pez.

For me, Trazadone feels like normal sleep. I don't wake up at night, I don't move around (formerly a huge problem) and I feel awake in the AM.

Share this post


Link to post
Share on other sites

That's sounds good. I've been generally doing better, but last night, I tossed and turned and dreamt/hallucinated all night. Waking up felt like I was getting a rest from sleeping. Ugh.

Share this post


Link to post
Share on other sites
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.

 

I have not had an issue with "mental health." I also have Anthem.

 

Consider this:

Pick up Benadryl (diphenhydramine) and you are buying an"allergy medication."

Pick up Unisom (diphenhydramine) and you are buying a "sleep aid."

 

Notice the actual drug is the same (diphenhydramine), but the companies that produce Benadryl and Unisom market the drug (and label the drug) as two completely different things. One is a sleep aid (induces drowsiness) while the other is an antihistimine with drowsiness as a side effect. Technically speaking, these two drugs (Benadryl and Unisom) are the same drug. So then, why is one considered an allergy medication and the other a sleep aid? Simple: Marketing and labeling.

 

Similarly, a pharmacedical (as in perscription-only) can be prescribed for multiple ailements. For example, I was put on an SSRI briefly to help me deal with Sleep Parlysis. SSRI drugs are usually prescribed for depression and related disorders, but in my case, the drug was prescribed not to treat depression but to treat sleep paralysis. Translation: my prescription was for a sleep aid, not depression.  I'm no longer on this medicaiton, but when I was, it was not categorized as a "mental health" drug because it was used to treat a symptom of my already-diagnosed neurological disorder.

 

My doctor also prescribes me adderall for EDS/sleep attacks during the day. Most people who take adderall take it for ADHD or similar ailements, but my prescription was to treat two specific symptoms of narcolepsy.  Another prescription I am currently on for insomnia is doxepin. From what I understand, doxepin is normally used to treat anxiety and/or stress-related ailements, but my doctor prescribes them to treat insomnia/fragmented sleep. So even though both medications might have originally been arbitrarlity qualified as "mental health" prescriptions, my prescriptions for them are NOT mental-health related.

 

You might be able to produce coverage by having your neurologist write a letter explaining the prescriptions and their function. This is similar to the letter some doctors write for women who are on a birth control pill as a form of hormone therapy (i.e. to treat Polycystic Ovarian Syndrome). Some insurance companies won't cover BCP unless it is prescribed to treat a hormone imbalance, and the only way to make that happen is for the prescribing physician to write a letter explaining the reason for the prescription to the insurance company.

 

Also, if they are qualifying medications like Provigil, Nuvigil, or Xyrem as "mental health," that's something you should be able to shoot down, as these medications were develeoped specifically for Narcolepsy which is a neurological disorder. When I was first diagnosed and originally prescribed Provigil, my insurance threw me  and my doctor a number of hoops to jump through before they begrudgingly covered it. You should be able to challenge their refusal to cover your prescriptions for Narcolepsy, or at least your doctor should be able to.

 

 

drago

Share this post


Link to post
Share on other sites

Drago, I think my specific problem is happening because my mom's insurance is an individual plan. She's retired so isn't under a group policy and I work for a very small company that doesn't at the moment offer health benefits. The research I've done leads me to believe that this mental health exclusion is specific to anthem's individual plan. I thought that explaining my diagnosis and the reason for my using the medicine would change their mind about the coverage. I sent in an appeal with my sleep study results and notes from every neuro appointment before and after diagnosis and a letter from my neuro saying that I have clinically definite narcolepsy and NuVigil/provigil are the preferred treatments. The letter they sent back recognized my diagnosis, but said that provigil/NuVigil are stimulants and therefore can't be covered because of the benefit exclusion. Apparently diagnosis and purpose if the medicine doesn't matter. The only thing that matters is this arbitrary categorization of the medicines under "mental health." My next option is to go in front of a panel. This is so defeating and wrong.

Share this post


Link to post
Share on other sites

This is wrong and I hope you do go in front of a panel. For example, Cataplexy is often treated with antidepressants, that does not make cataplexy a mental health issue.

Note that Adderall is licensed for Narcolepsy and ADHD. It is wrong for them to pick and choose like that. It is worth pushing for something to help you.

Share this post


Link to post
Share on other sites

I have not had an issue with "mental health." I also have Anthem.

 

Consider this:

Pick up Benadryl (diphenhydramine) and you are buying an"allergy medication."

Pick up Unisom (diphenhydramine) and you are buying a "sleep aid."

 

Notice the actual drug is the same (diphenhydramine), but the companies that produce Benadryl and Unisom market the drug (and label the drug) as two completely different things. One is a sleep aid (induces drowsiness) while the other is an antihistimine with drowsiness as a side effect. Technically speaking, these two drugs (Benadryl and Unisom) are the same drug. So then, why is one considered an allergy medication and the other a sleep aid? Simple: Marketing and labeling.

 

Similarly, a pharmacedical (as in perscription-only) can be prescribed for multiple ailements. For example, I was put on an SSRI briefly to help me deal with Sleep Parlysis. SSRI drugs are usually prescribed for depression and related disorders, but in my case, the drug was prescribed not to treat depression but to treat sleep paralysis. Translation: my prescription was for a sleep aid, not depression.  I'm no longer on this medicaiton, but when I was, it was not categorized as a "mental health" drug because it was used to treat a symptom of my already-diagnosed neurological disorder.

 

My doctor also prescribes me adderall for EDS/sleep attacks during the day. Most people who take adderall take it for ADHD or similar ailements, but my prescription was to treat two specific symptoms of narcolepsy.  Another prescription I am currently on for insomnia is doxepin. From what I understand, doxepin is normally used to treat anxiety and/or stress-related ailements, but my doctor prescribes them to treat insomnia/fragmented sleep. So even though both medications might have originally been arbitrarlity qualified as "mental health" prescriptions, my prescriptions for them are NOT mental-health related.

 

You might be able to produce coverage by having your neurologist write a letter explaining the prescriptions and their function. This is similar to the letter some doctors write for women who are on a birth control pill as a form of hormone therapy (i.e. to treat Polycystic Ovarian Syndrome). Some insurance companies won't cover BCP unless it is prescribed to treat a hormone imbalance, and the only way to make that happen is for the prescribing physician to write a letter explaining the reason for the prescription to the insurance company.

 

Also, if they are qualifying medications like Provigil, Nuvigil, or Xyrem as "mental health," that's something you should be able to shoot down, as these medications were develeoped specifically for Narcolepsy which is a neurological disorder. When I was first diagnosed and originally prescribed Provigil, my insurance threw me  and my doctor a number of hoops to jump through before they begrudgingly covered it. You should be able to challenge their refusal to cover your prescriptions for Narcolepsy, or at least your doctor should be able to.

 

 

drago

I believe Unisom has a slower release than benedryl though.

Share this post


Link to post
Share on other sites

Drago, I think my specific problem is happening because my mom's insurance is an individual plan. She's retired so isn't under a group policy and I work for a very small company that doesn't at the moment offer health benefits. The research I've done leads me to believe that this mental health exclusion is specific to anthem's individual plan. I thought that explaining my diagnosis and the reason for my using the medicine would change their mind about the coverage. I sent in an appeal with my sleep study results and notes from every neuro appointment before and after diagnosis and a letter from my neuro saying that I have clinically definite narcolepsy and NuVigil/provigil are the preferred treatments. The letter they sent back recognized my diagnosis, but said that provigil/NuVigil are stimulants and therefore can't be covered because of the benefit exclusion. Apparently diagnosis and purpose if the medicine doesn't matter. The only thing that matters is this arbitrary categorization of the medicines under "mental health." My next option is to go in front of a panel. This is so defeating and wrong.

 

Hey CarlaWilS:

If this is the case, I encourage you to go to the panel and push. The mental health exclusion is that your insurance does not cover mental-health-related costs; I am assuming this includes office visits as well as medications, correct? Since narcolepsy is a neurological disorder, and not a mental health disorder, the treatment you receive for the symptoms of said disorder will be covered even with mental-health-exclusion, since it wouldn't apply.

 

Provigil/Nuvigil were specifically developed to treat narcolepsy and other sleep disorders, so there is no excuse to put them under "mental health" in terms of medication. Categorizing all stimulants as "mental health medications" is illegitimate in medical terms. This is not opinion, medical or otherwise, this is fact. Nuvigil and Provigil are not "mental health" drugs; the FDA has approved them for use in narcolepsy, shift work sleep disorder, and other sleep disorders with EDS. There is NO mental health disorder that is treated "on label" by provigil (by on label, I mean accepted FDA approval kinda thing.) How can they categorize Provigil/Nuvigil was "mental health" under these circumstances?

 

Adderall, too, is approved for the treatment of narcolepsy by the FDA. So if you're appealing for that, you can point out that the FDA approves adderall for the treatment of narcolepsy.

 

One question: Have you had your doctor send in a letter? When I was having trouble with the insurance company, having the doctor send in a letter explaining the treatment and diagnosis was the only thing that worked. I could talk to people until I was blue in the face, but the doctor's letter actually pushed things forward.

 

And if they won't cover provigil and nuvigil, have you considered asking about Xyrem? This medication was developed exclusively for the treatment of narcolepsy, so it cannot possibly qualify as "mental health" in terms of category, and many people here have posted that it stops their sleep attacks.

 

Anyway, I hope you have good luck with this. Push ahead, get your doctor on board (important!) and if you do have to go in front of a panel, be prepared with facts about the drugs, facts about narcolespy, etc.

 

drago

Share this post


Link to post
Share on other sites

Thanks for the advice, Drago. My doctor did write a letter, but they still didn't approve it. My parents and I met with an insurance broker and he said that Anthem's individual plans are awful because they basically don't give a sh*t about you. It is written into the contract that they get to decide what is medically necessary. I'm going to file a complaint with my states department of insurance and switch to another provider. Never going with anthem again unless its a group plan (which, incidentally, the broker said are awesome).

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now