6 replies to this topic

[N-86]

I was was recently diagnosed with Narcolepsy (on November 15, 2012), and this is my first post to this forum. My doc prescribed me Modafinil 200mg (generic Provigil), but thanks to my insurance it still was going to cost $250. Due to my inability to afford that he then prescribed Adderall 10mg (my insurance will only do generics so i got the amphetamine mixed salts). That seemed to work really well for the first week, then i begain to go back down to my "normal". When it was time for me to get my refill i talked to the doc and he uped the Rx from the 10mg to 20mg, and that is when the trouble begain. I have been on the 20mg Adderall generic sence December 15th. I do not know when the trouble begain exactly, because remembering things is even worse now then what it use to be. This is what has happend to me on the 20mg: Worse memmory, slower thinking, slower moving, slower reaction time, slower speaking, increased depression, vision problems, worse headaches. Im sure there is more but i cant think of it, anyway this is what I noticed, unbenownst to me i was also becoming agitated and mean. i only found this out after Christmas, aperently i was extreamly mean and yelling at people. I do not remember this, i remember being more depressed and withdrawn than usual but i dont remember ever yelling or being mean. affter Christmas my wife confronted me and told me how horible i had become and made it clear that i had ruined Christmas for her, our daughter (1 year old girl), my side of the family, and extreamly upset/pissed off her side. So she made me go back to taking 10mg 2x a day, she wants me off of it but says i cant just stop taking it because of withdrawl symptoms (she does alot of reaserch online, but realy doesn't know how to pick good sorces or aply what she reads to real life apropiatly). So i am now back to 10mg adderall, my sleepiness is returning (i fall asleep driving to work and at work) but aperantly i am "less" mean. I have a doc appointment thursday Jan 3rd to "fix" my problems, but i am completely lost on what to do. I cant aford much, i already have about $100 a month in Rx for other problems. I need to be able to make it through the day without falling asleep and be able to get stuff done. Narcolepsy and now the meds to treat it are ruining my life, i was able to manage for years but it has gotten to the point that it is way more then i can handle. My wife blames me for nearly everything, witch i am usually at fault. now i have ruined the already broken ties with my family. No one around me understands what i deal with. I am only able to keep my job because i work for my dad, but he has made it ovious that i am not doing good enough. he now tells me on a daily basis when i leave to "get some rest", which is his way of saying i was to tired and didn't do enought today. My house is a complete disaster and my life is worse. I have to find a way to manage this before i lose my job, wife, family, and whatever else it can take.

Well i just realized iv been ranting, and i didn't mean to. I guess my question is what is there i can take to help eliminate my EDS and is there anything i can take to get better sleep at night? (I lave REM sleep problems like most/alot of others with Narcolepsy). I have looked on here the best i could, but my ablity to comprehend and organize thoughts has gone out the window. I have found the list of meds/stimulants for EDS, but i cant seem to find anything on helping sleep. Is there any advice or resorce that you all could point me to?

Just an FYI i am only going to my general doctor, i cannot find a Narcolepsy specialist in my area.

[munky]

Let me preface this by saying: I am not a doctor. I am not offering medical advice or recommending a particular medication. I am only trying to offer advice on how to deal with the costs of medication.

Xyrem is supposed to help with sleep, I think, but I don't know what diagnostic criteria you have to meet to get the prescription. Also, there's no generic available, so it may well cost more than you can afford, and I don't know if the manufacturer has any special programs to help cover the cost for people who can't afford it on their own. Many manufacturers, however, do--as long as there is no generic form available.

I take Nuvigil. Nuvigil is a newer medication that's a slightly different formulation of Provigil. Because it's newer, there's no generic. Because there's no generic available, the manufacturer offers special programs to help cover the cost of the medication. I found out about this when I got my first prescription, because the medication is not on the formulary for my prescription insurance and I was afraid it would end up costing more than I could afford (I got lucky, it didn't). I believe there's a toll-free number on their website you can call to find out if you'd qualify. I'd consider doing that and, if you qualify, mention it to your doctor AS AN OPTION. It may be something that would work, as long as it doesn't interfere with your other medications, but only your doctor can determine that.

Narcolepsy is, unfortunately, one of those disorders where every patient requires a different treatment. No single treatment works for everyone, and everyone ends up with some different medication or combination of medications. Nuvigil works for me, but may not work for you, especially with the other medications you're on. Your doctor is the only one who can safely recommend medications or medication changes for you.

I've found that I've been very lucky to have extremely understanding and supportive family and friends. A lot of people have problems in their home and work life as a result of this disorder and its treatments, especially while trying to find the right combination of medications to treat it. I wish I could offer you some kind of help more substantial than my own understanding and a shoulder to cry on, but the only thing I can offer is the knowledge that you aren't alone. There are people out here who know what you're going through and understand all the problems you're having, and some of them may have better advice than I do on how to handle it.

All I can say is, talk to your doctor--not just about the medications, but about their costs. If you have a good doctor, s/he will do his/her best to help you find a treatment plan that not only works medically, but works within your budget. S/He may know about programs to help you with the costs of medications, as well.

Good luck, and remember: we're here to listen when you need to talk. We will offer what advice we can on all aspects of living with this diagnosis, but we are not ourselves doctors, and any medication/treatment-related advice you get here should be discussed with your doctor before you implement it.

[N-86]

Thank you for your reply! I know no one here can give actual medical advice, and what i was looking for was just advice on what to talk to my doctor about on my upcoming vist on thursday.(which you gave some me some great things to discus with him, and i thank you very much for that!)

I have looked into the Nuvigil and found they offer a copay reduction of up to $50, that makes it an afordable option so i will be discussing that with my doctor. As far as Xyrem i dont think that is considerable, my estimated copy is $1,000 for 30days worth!(i pay 25% retail with my insurance) im not sure that is correct though because it list 540 qty of 500mg/ml for 30 days worth. I did find the list of medications to help with REM problems, strange that i was unable to find it even though it was just under the EDS ones . so i will be taking that with me as well, seing as how i need to change my antidepresant anyway, it is a great reaferance.

On a side note, has anyone ever taken Celxa and seen a reduction/improvment in sleep quality or REM intrusion? I have been on it for a while now (long before being diagnosed with Narcolepsy) and didn't think anything of it other then a antidepresant. Thinking back however i rember i use to have intrusive "daydreams" alot more often, and though i rarley remember dreams, i use to remember at least having one more then i do now. Never payed any atention to the effect of the daydreams becoming less frequent, but sence it is a SSRI mabey it was having a effect on REM?

Anyway thank you for your advice, and for anyothers that do as well!

[DeathRabbit]

Thank you for your reply! I know no one here can give actual medical advice, and what i was looking for was just advice on what to talk to my doctor about on my upcoming vist on thursday.(which you gave some me some great things to discus with him, and i thank you very much for that!)

I have looked into the Nuvigil and found they offer a copay reduction of up to $50, that makes it an afordable option so i will be discussing that with my doctor. As far as Xyrem i dont think that is considerable, my estimated copy is $1,000 for 30days worth!(i pay 25% retail with my insurance) im not sure that is correct though because it list 540 qty of 500mg/ml for 30 days worth. I did find the list of medications to help with REM problems, strange that i was unable to find it even though it was just under the EDS ones . so i will be taking that with me as well, seing as how i need to change my antidepresant anyway, it is a great reaferance.

On a side note, has anyone ever taken Celxa and seen a reduction/improvment in sleep quality or REM intrusion? I have been on it for a while now (long before being diagnosed with Narcolepsy) and didn't think anything of it other then a antidepresant. Thinking back however i rember i use to have intrusive "daydreams" alot more often, and though i rarley remember dreams, i use to remember at least having one more then i do now. Never payed any atention to the effect of the daydreams becoming less frequent, but sence it is a SSRI mabey it was having a effect on REM?

Anyway thank you for your advice, and for anyothers that do as well!

As an SSRI it will have an effect on REM. Most of them seem to demote it, but occasionally, such as with my roommate, paradoxical reactions can occur. His Celexa caused him to have manic episodes where he couldn't sleep. So yea, reactions can very, but in general, I would say if you are noticing REM reductions, it's prolly doing it. Which is a good thing. Just be careful about relying too much on those. I have good experiences and not so good experiences with SSRIs, but it's coming to light now that they do cause dependency and can cause serious cessation issues.

[N-86]

Thought i would give an update.
 
I have stoped taking Adderall completely, and am now on Nuvigil 150mg Daily.  I started the Nuvigil on January 3rd so i have been on it just over 2 weeks. So far i am doing much better on it then the Adderall, much less side efects.  The side efects i have been having on the the Nuvigil are mainly headaches (Allways had them, but they started becoming more frequent, they are starting to return to normal as i 'adjust' to the med), and eye problems (Allways dry and burning, eydrops help for a few minutes but thats all.  Also pain above and behind my eyes.  Increased senitivity to light.  Constantly changing vision. Different pupil sizes.).

 

As far as effectiveness of the Nuvigil, I beleive it is doing a great job.  It has pretty much eliminated my sleepyness (wanting to fall asleep), but it has done nothing for my fatigue (wornout & exausted).  From what i have found it is not suppose to relive fatigue, just sleepiness, so i am not counting it against it.  Anyone else taking Nuvigil know if it does/should help with fatigue?

 

I started taking my Celexa 20mg at night instead of the morning, and it has helped improve my quality of sleep a little bit.  Its not much, but any help at all is needed, lol.  I am still looking into changing the Celexa, but am still on it for the time being.

 

I having been looking around when i have time (not often these days), and i have noticed something.  Everywhere seems to include fatigue as a sympton of Narcolepsy, but i have never seen information on how to treat it.  All i ever see is stimulants for EDS, and meds for Cataplexy.  Am i missing something here or what?

 

As always i apreciate any help and info anyone can offer.

[DeathRabbit]

The stimulants and Vigils can help, but ultimately, the fatigue will most likely always be there to some degree. Managing your sleep rigoursly will net you the most gains there, methinks.

[Megssosleepy]

Xyrem does have a program to help with your copay.  You should look into what they can do for you.  Xyrem is a medicine that you take at night to force your brain into slow wave sleep.  Our brains get little to no SWS on their own.  This in turn would help with your REM problems.

 

The fatigue kind of goes hand in hand with EDS.  I have found that stimulants just mask the overly sleepyness.  Unfortunitly, there is nothing on the market right now that can "cure" or completely diminish the symptoms of Narcolepsy.  Its all about finding what works best for you.

 

Hopefully your side effects will lesson with time.  I heard that it can take a month or so to get past the headaches and such.  Good Luck!