Quantcast

Living with Narcolepsy

Meds No Longer Working: Need ideas!

Hello everyone. I’m a new user and this is my 1st post. I’ve been living with narcolepsy for >20 years. I have tried Provigil, Nuvigil, all kinds of anit-depressants but the only thing that has ever helped is Adderall. I’ve been taking 30 mg twice daily for 2-3 years and it has lost all effectiveness. Does anyone have any suggestions?

Hi there.

I was diagnosed almost 20 years ago and the most useful thing for me has been to avoid long-term dependence on medication, which always came with severe unpleasant side effects. I also think the silver bullet approach to disorders by some doctors is ridiculous, as these are complex issues that a single pill is unlikely to fix. None of the medication ultimately helped me have a healthy balanced life, but behavioural therapy and a strict lifestyle did.

So I suggest you look at all the non-medicated aspects of your life that you can control, like routine in sleeping and eating times, sleep hygiene in terms of tech habits and light regulation in your room (black out curtains!), cutting out all foods that interfere with hypocretin (eg concentrated sugars and starches), eating more foods that promote orexin production (eg fermented foods), exercise (for the same reason), as well as as mindfulness-based cognitive therapy (to deal with mood imbalances that worsen cataplexy) and other behavioural therapies.

Funnily enough I have not yet tried Adderall.

Hope this helps.

K

2 Likes

And I have to agree with kaiza. My situation is pain related and not sleep, but whether it’s pain meds or sleep meds my body builds up a tolerance to the medications and I find I need more and more of the meds to do the same thing. I’ve found I need to regulate my intake or when I have a severe need they tend not to work.

I also agree with Kaiza in regard to examining other life aspects/treatments outside of the medication realm. Chemical treatments can work short term, but long term they can really mess with the mind and body, well, they do with me.

Merl from the Moderator Support Team

I have to use Modafinil twice daily along with Adderall twice daily to even have a chance on having a productive day. Maybe you could try that, to see if it works. Hope the info helps, good luck.
Dee

I’ve also tried a lot of different medications and Adderall is the only thing I find that has helped me. I’ve been able to maintain the same dose (one 30 mg extended release and two 20 mg instant release) by taking “drug holidays” (or just not taking the medication on days I’m not working or have a social obligation) - so I’ve avoided increasing tolerance by skipping days. I’ve been on the same dose for maybe 6 years now. So I’d say that maybe varying how you take the medication (instant vs extended release, how often you take it in a day - hey, maybe it would work if you did a lower dose more frequently? Not a doctor, just an idea) and also incorporating those days off may be something that could help. Best of luck.

Hi there. I have been living with Narcolepsy for a long time. I wasn’t diagnosed until 2015 though. Anyways I have been on Nuvigil for almost five years now and I want to try other medications like Zyrem for the cataplexy. I have to take my medicine. It gets really bad if I don’t. My cataplexy gets worse and I just feel horrible. But I will say somethings that have worked in conjunction with the meds is working out, taking naps, being consistent with bed time and trying to stay off sweets(it’s usually hard for me because I love chocolate).

@trust_level_0

Hey, @RADKINSON, @wolfgal269 and @WhiskeyPhillip, welcome to the community! Great to see you posting and sharing. Narcolepsy is a difficult condition, and it sounds like you have lots of tricks and skills for dealing with it. And @AJ47, we’re glad to see that you are back.

We have another new member, @Briana, who is going to fit in here just fine. You can see her profile by just clicking on @Briana . Same goes for all the other @ tags.

From the “Did You Know” department: you can click on any member’s avatar, to instantly see their profile AND (ta-da!) have a image button that you can click to send a private message? Fast and easy.

@AJ47, I hear you on the loving chocolates, but needing to stay off the sweets. Have you tried developing a taste for dark chocolate? It has less sugar, and I find that it takes far less dark chocolate to satisfy “that” craving. It does have a higher caffeine content, but that may not be such a bad thing for you.

Anyway, welcome and welcome back everyone! If there’s any way that ModSupport can help, you know how to get hold of us. Yup, click on the avatar and you’re on it.

Seenie from the ModSupport Team

Hey everyone. @ModSupport thank you for suggestion. And yes to be completely honest. I have not indulged in chocolate too much lately. I feels good to be back! :smile: I have made a few lifestyle changes. I am meditating more, have a regular workout routine and I am eating healthier. ( with the occasional slip-up of junk food.) I have been having insomnia for a while now… Sometimes its so bad I will go to bed at 4am and wake up at 9 or 11am. So you can imagine that’s not at all an adequate amount of sleep. I want to get into the habit of taking naps during the day. I also have been keeping track of my sleep patterns and doing that actually helps. if you do not keep a sleep journal, I highly recommend everyone do that. I look forward to hearing from every and welcome @Briana

That is awesome! I have had narcolepsy since I was ten but didn’t get diagnosed tell about five year’s ago. I’m 38 now. Before I was diagnosed I would always go to sleep. Unless I was working or I knew I had to stay awake for my kids. My Mom learned that I would move to the tempo of music. So, if it was slow I was slow. If it was fast I was fast. Then if it had a steady tempo it was just right. So, that’s what I would use to help me focus. After I was diagnosed I was put on meds. It was the first time I can remember staying awake all day. I started working at a new job after being diagnosed. During that time of 4 and half years I went from taking no meds, to take 12 meds and having more migraines and more attacks. Then they found away to get rid of me. I’m glad they did! I quit taking all of the meds, I’m eating like I should and I can control my triggers alot better.

Wow, what a great start to an interesting thread! The posts on this thread are full of interesting tidbits about eating better, meditation, regulation by music, sleep journalling and more! I think we need more information like this here, don’t you?

A belated but warm welcome to the forum, Radkinson, Wolfgal and WhiskeyPhillips! And hello again to AJ47 and Rachel. It’s nice to hear from you again.

This discussion has been dormant for a bit, but it seems to me that it’s the kind of thing that a lot of members here might find really interesting and even USEFUL!

I’m putting this “out there” for the entire membership: a lot of us are sheltering in place and going a bit ants-y. Why not put in your 2c worth? Somebody’s bound to benefit from your wisdom, or at the very least, enjoy your company.

Hope everyone’s keeping well! Drop a line, why don’t you?

Seenie from ModSupport

If it’s been a while, here’s how to get back into livingwithnarcolepsy.org:

  • Sign in with the email address on this message
  • Say you’ve forgotten your password, even if you remember it
  • Follow the instructions on the screen
  • Retrieve the new email from your inbox (or maybe your spam folder)
  • Follow those instructions and …

image

cc: @trust_level_0