Tuesday, September 14

Narcolepsy and The Medication Nightmare

I think we've established that there's no cure for narcolepsy. 

There are however, several medications that are used to treat narcolepsy and it's friends. My husband has only tried a few so far, but the differences between them are astounding... and  a little scary.

Upon his initial diagnosis approximately 2 years ago, he started on Provigil. This was a drug that we'd never heard of, but then again, we didn't know a whole lot about narcolepsy either. I liked my husband on Provigil. He seemed like himself. That may sound silly, but it's the most accurate way I can put it. You see, narcolepsy often turns him into a different version of himself. He's muted and distant, like a faded photograph that you have to hold at an angle to see. It's like he's not all there - and in reality, he isn't. But with Provigil... wow, what a difference! Suddenly the photograph is in color, sharp and clear - it was great! For me, anyway. For my husband, it was just OK. The side effects included headaches and stomachaches which were quite bothersome, but went away over time. We thought we'd found a viable solution.

Then our health insurance got in the way. 

With insurance, the amount of Provigil my husband was prescribed amounted to about $400 per month. The cost was way beyond our modest budget. Just in case you didn't catch it before - that was with insurance. Suddenly, Provigil wasn't the answer anymore.

Next up, Aderrall.

Initially, it didn't seem  so bad. It kept him awake and alert and we didn't notice any side effects right away... It definitely wasn't like Provigil, but at least he was awake, right? That was when I learned that there's a lot more to treating narcolepsy than keeping a person awake. I've already gone into detail about how much I hate Aderrall, but I can never say it enough. At least it was cheap, I guess. With our insurance, it comes to about $12 a month.


Most recently, my husband was prescribed Nuvigil. He said that he felt the difference right away. Although I'll go into more detail in a different post, suffice it to say I loved him on it... but it didn't last long.The drug, I mean. The amount that he was prescribed was a free trial, and after that, we were on our own. Unfortunately, insurance doesn't cover it - at all. Fortunately, we're not the only ones who can't afford it. Drug manufacturers of Nuvigil have created a prescription assistance program that will help cover the costs of the medicine. We're in the process of applying for that.


It is a nightmare, finding the right medication to treat a chronic illness. With narcolepsy, one has to be so careful. A drug that may keep you awake might also trigger attacks of cataplexy. A drug that helps with cataplexy may make the night binges worse. It's such a delicate balance...

...but so worth it.

12 comments:

  1. I went through the same thing. Nuvigil is the best thing I've tried so far, but even with insurance my copay is pretty pricey. Adderall, on the other hand, is dirt cheap by comparison-but it makes me feel edgy/anxious and gives me palpatations if I take it for an extended amount of time. Grrr! There should be a 'frequent flyer' program or something for long term drugs...buy 2 months worth and the 3rd month is free!! Just sayin'.

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    1. Sounds like a plan to me... buy one month, get one free...

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  2. Great blog! My wife was diagnosed with narcolepsy (without cataplexy) about 14 months ago. I notice in your discussions of medications you have mentioned stimulants, but nothing to help the narcoleptic get restorative sleep. My wife takes Xyrem at night to help her sleep, and stimulants during the day (only some days, because of side effects of the stimulants).

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  3. Adderall and Nuvigil..my body has grown tolerant of them
    Nuvigil was ok to start...now it doesnt do much anymore..and that's taking it with coffee twice a day and either No Doz or 5 hour energy...and still always sleepy..i wish i could take Xyrem, but that's a no go for my house

    good luck...it seems like money or ineffectiveness seem to stand in the way of a quality life sometimes

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  4. Jeremy, you're right, I haven't addressed that part of it at all. We're still learning so much about how to treat him so that he can have a better quality of life all 'round - not just be more awake. Thanks for the input - it sounds like your wife may have found a good combination!

    D'lorah, I totally agree with you. It seems like quality of life is sometimes out of our hands, which is frustrating and unfair, I know.

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  5. This post reminds me that along with finding suitable medicine is finding a suitable doctor that will address the social aspects of treating narcolepsy...in other words, counseling. Finding the right medicine can depend of your lifestyle....work, entertainment, marriage, children, personal goals and how you feel about yourself. You're right...it's a delicate balance but it's harder if the scale is unstable...fortunately your solid love for him truly gives him a stable foundation for that scale....

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  6. Thanks very much! I really hope so... I personally think that the "social aspects" of Narcolepsy are the hardest. As if the physical aspects weren't bad enough, I know.

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  7. I'm so sorry to hear about your troubles. My husband has narcolepsy and I'm so glad we live in the UK and have the wonderful National Health System. I can't imagine how difficult it must be for you. SEnding you love and support.

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    1. I think we'd love to try National Health Care! Thanks so much for your kind words.

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  8. Dear Narcoleptic's Wife,

    I myself have Narcolepsy and Insomnia. I wish I only had one or the other, but I sympathise with you. I worry about how my family and husband feel. If you would like to contact me through e-mail I would love to talk to you. I know my husband is more scared than he reveals. Which, bothers me. For the longest time no one believed me about having these disorders. I commend you on your blog and would love to speak with you. Thank you

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  9. Thank you Lindsey - that means a lot...
    XO

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  10. I was diagnosed after moving to Canada from UK nearly 4 years ago. It was my girlfriend (now my wife!) who asked why i was acting funny when i laughed...which i now know is cataplexy. I had gone for years in my twenties working all the hours i could and following the usual UK route of drinking after hours to relax. I've found out through reading your blog and others that there are so many social aspects to Narcolepsy that I would never have guessed. I spent a year on Effexor...which like your husband was "OK" but had side-effects. Now i'm on Concerta which has zero side-effects and i can say i am pretty happy. But then my Narcolepsy was never debilitating.

    I hope you keep writing your blog, my wife found it and sent me the link. Understanding the wider aspects of the condition is only possible through people such as yourself, sharing their experiences.

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