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RedFawnMom

Nuvigil Losing Effect

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Hello everyone. I am new here, and new to narcolepsy. I was diagnosed about 2 weeks ago after a night time sleep study and the daytime MSLT. I do not have C, and my night time sleep study was normal (I take attivan at night to sleep, though). But, during the MSLT, I fell asleep within 4 minutes during each daytime nap, even after having "normal" sleep the night before.

So the neurologist at the sleep clinic told me I have narcolepsy, and then told me about this amazing drug, Nuvigil, that would make me feel awake during the day. I practically hugged him, I was so happy it was that easy. I've taken it for a little over a week now - started with 1/4 of a pill (I am usually very sensitive to meds and was nervous) and increased by 1/4 each day until I got to the full 150mg dose. I felt very alert and very focused for the first three days on the full dose, but I was feeling very lightheaded for a couple of hours in the middle of the day. Then on the fourth day, yesterday, the lightheadedness was gone, but I was back to feeling very sleepy. Today, again, I took the full dose, and felt nothing. I had to take a nap at noon today and was fighting off sleep the rest of the day.

The neurologist never even hinted at the fact that this could happen, but after joining here I see this has happened to a lot of people. I am going to call him on Monday, and I am guessing he will suggest increasing the dose. I hope that works, but if it doesn't, what's next? The thought of taking amphetamines terrifies me. I'm so down about this....I was ecstatic to finally have a diagnosis and was really thinking this med would change my whole life, and it did, for three days....and now, I'm just feeling depressed that I have narcolepsy, and that that will never change.

I guess I'm just wondering if anyone else has been through the same process with Nuvigil suddenly not working, and what you ended up switching to. Thanks.

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I do not think it stopped working per say. The time it needs to build up has not even come in 1 week. What you felt was the "rush" or beginners high. This "rush" is often very potent. Then you went without some sleep because of the "rush" then you went back to needing a nap. So give it time to build up and I think the net positive will begin to show.

One trick I use is to mix and match Provigil and Nuvigil. I take a strong dose in am and a weaker in pm. When 1 weakens I switch to the other as primary and when it weakens I go back. I now take Nuvigil am and Provigil pm for the last year and it is just now falling off again, it might be time to readjust and go opposite again.

I have never taken serious stimulants and I don’t want too. One thing I would like to try is adrenaline (I had one adrenal gland removed as an infant and have never had much adrenaline) but my Doc will not even consider it.

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Oh, yes, I'm experiencing the same thing! I began with the 150 mg, and now I'm on 250. I've been taking it a couple months, and I had the same exp. as you. Yes, it is very exciting to know you'll be awake! I started out on generic ritalin at 10mg 3x a day... which was so horrible. my doctor said I'm small so I wouldn't need more than that. He was very wrong in that assumption. I eventually increased my dose and it didn't help. Ritalin made me shaky (nuvigil does too after a while) and sometimes it didn't work at all, or if it did, it was so short that I'd crash in an hour or two. You know how you have good days and bad days? I think that it only worked sometimes b/c I happened to have a good day. Whether that was affected by my diet or stress levels or whatever, I do not know.

So onto Nuvigil... I've been on it a couple months and at first I was in love. Couldn't believe that after a year of wondering what it would be like to try it out, I finally did! I had it, and for the first week I didn't need a nap at all. The second week, i began to feel just a bit tired and could use a nap, but still had the ability to fight it if I wanted. But then I got to where I had to take a nap. And even now, when I do lay in bed waiting to fall asleep bc I'm so tired but my body is being kept awake, I get super bad anxiety. Every sound in the house makes my heart race, every thought. I have to wear ear plugs and an eye mask lol

I take a couple days off the meds every two weeks. Sometimes I take one day, sometimes two. Lately though, I've been considering taking a full week off and starting over. I'm also looking into diet, exercise, and vitamin/supplements. I know that this won't eradicate the condition, but it make make it a bit more tolerable. Do you take a multivitamin or b-complex? I do feel that taking vitamins that are related to energy enhancement do bring a small bit of relief. And on my good days, they work really well.

P.S. I apologize for my rambling and inconsistent speech. I'm so tired right now and my arms feel like noodles. Hard to hold them up to type.

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I do not think it stopped working per say. The time it needs to build up has not even come in 1 week. What you felt was the "rush" or beginners high. This "rush" is often very potent. Then you went without some sleep because of the "rush" then you went back to needing a nap. So give it time to build up and I think the net positive will begin to show.

One trick I use is to mix and match Provigil and Nuvigil. I take a strong dose in am and a weaker in pm. When 1 weakens I switch to the other as primary and when it weakens I go back. I now take Nuvigil am and Provigil pm for the last year and it is just now falling off again, it might be time to readjust and go opposite again.

I have never taken serious stimulants and I don’t want too. One thing I would like to try is adrenaline (I had one adrenal gland removed as an infant and have never had much adrenaline) but my Doc will not even consider it.

Thanks for the reminder about giving it time to build up, I appreciate it. I think as soon as I didn't feel it working as much, I started to panic. With your combo of Provigil and Nuvigil, do you still need a nap during the day?

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Oh, yes, I'm experiencing the same thing! I began with the 150 mg, and now I'm on 250. I've been taking it a couple months, and I had the same exp. as you. Yes, it is very exciting to know you'll be awake! I started out on generic ritalin at 10mg 3x a day... which was so horrible. my doctor said I'm small so I wouldn't need more than that. He was very wrong in that assumption. I eventually increased my dose and it didn't help. Ritalin made me shaky (nuvigil does too after a while) and sometimes it didn't work at all, or if it did, it was so short that I'd crash in an hour or two. You know how you have good days and bad days? I think that it only worked sometimes b/c I happened to have a good day. Whether that was affected by my diet or stress levels or whatever, I do not know.

So onto Nuvigil... I've been on it a couple months and at first I was in love. Couldn't believe that after a year of wondering what it would be like to try it out, I finally did! I had it, and for the first week I didn't need a nap at all. The second week, i began to feel just a bit tired and could use a nap, but still had the ability to fight it if I wanted. But then I got to where I had to take a nap. And even now, when I do lay in bed waiting to fall asleep bc I'm so tired but my body is being kept awake, I get super bad anxiety. Every sound in the house makes my heart race, every thought. I have to wear ear plugs and an eye mask lol

I take a couple days off the meds every two weeks. Sometimes I take one day, sometimes two. Lately though, I've been considering taking a full week off and starting over. I'm also looking into diet, exercise, and vitamin/supplements. I know that this won't eradicate the condition, but it make make it a bit more tolerable. Do you take a multivitamin or b-complex? I do feel that taking vitamins that are related to energy enhancement do bring a small bit of relief. And on my good days, they work really well.

P.S. I apologize for my rambling and inconsistent speech. I'm so tired right now and my arms feel like noodles. Hard to hold them up to type.

I really appreciate your reply, thank you! I am so grateful to have found a place where people understand what it is like to always be tired (though I wouldn't wish it on anyone). Do you think the Nuvigil is helping you at all most days now? Do you feel different than you would without it? I am also small and usually take half or 3/4 doses of medications, which is why I am very surprised that I might need the larger dose of Nuvigil. But I guess everyone metabolizes medications differently.

I actually get vit B12 injections, because I cannot absorb B12 through my stomach. I found this out about 7 months ago when I finally talked to my primary care doc about my tiredness, and they tested my B12 level, which was very low, and continued to drop even after taking an oral supplement. It's coming up, but slowly. I know it contributes to my tiredness, but it's not the primary cause. I also take vit D -- I was also very low on that, which can make you feel tired. Everyone I know who has had their vit D level checked has been low, it's so common.

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I do still nap and probably always will. My attacks come at 11:00 - 11:30am and 3:00 - 3:30pm or after 1-2 hours of hard physical labor. I have had some signs of N since pre 2001 but it was 2001 that it became a go see a Doctor condition. I was in trying to get diagnosis since 2001 and it got worse every year since. 2008 to 2010 it really accelerated. In 2008 it was suspected it was N but it was only Jan 2010 it became official. Over the last two years since I started Provigil I’ve seen a drastic ramp up of my attacks. Provigil at first (the first week) was wonderful, then declined over the next six months, yet it was still a relief over not being treated. With Provigil / Nuvigil I can fight the need to nap when necessary, even miss a nap for a whole day on occasion, without meds I cannot fight off an attack for long, at best 1 nap a day, at worse 2 - 3 naps a day. With meds all the other symptoms are lessened, without they all are more severe.

But the meds for me serve a more important reason, without them I am a grumpy, impatient, frowning, depressed and groggy person. With them I am able to moderate my mood and I can deal with having N mentally, I am not happy about having N but I can deal with it.

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Hey, Kat. I just wanted to tell you I started taking Vit D3. It is helping a bit with being so tired. I of course am still tired, but it is taking a bit of it off which is nice.

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