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Lesson Learned


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#1 munky

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Posted 15 December 2012 - 01:08 AM

So, when I got the Dx of narcolepsy, I decided it was finally time to get around to making a few diet changes I'd been waffling about for ages: reduce sugar intake, cut out the artifical sweeteners and the caffeine, start drinking more water.

I've tried cutting out caffeine in the past, and ended up just cutting the amount of caffeine I consume in a day ... and kind of fizzled out there. I never managed to go as far as cutting it out completely. However, I went from drinking a 12-pack of Mountain Dew a day to drinking 4-5 cans of Diet Coke: much less caffeine and artificial sweetener. And I decided that the best way to cut the caffeine out was to reduce my consumption until I was able to cut it out completely. On a normal night, I would wake up, have a can of soda while eating dinner and getting ready for work, pour another can before I left and drink it on the way to work and through the first part of my shift, and take 2 cans with me--one for the last half of my shift, and one for the drive home. Then, sometimes, I'd come home and have another while doing chores or homework before I went to bed. To cut back, I decided I would not take any soda to work with me. I cut some lemons and limes into wedges, put them in my lunchbox with my lunch, and at work I would use those to add a little flavor to water. I still had the soda with my dinner and the one for the drive/start of my shift, however, so I was cutting my caffeine intake about in half. I expected headaches, but knew I could handle them.

I didn't think about the Nuvigil headaches. I hadn't, at that point, started getting them yet. I believe, however, that they've now started, because I've had 3 full-blown migraines in the last 7 days. Now, caffeine withdrawal headaches are headaches. Yes, they hurt, and they can hurt a lot, but they aren't generally migraines--at least, in my experience. They don't come with the nausea, dizziness, sensitivity to light, sound, smell, touch ... everything. And while I've heard of Nuvigil causing headaches, I hadn't heard that they were full-blown migraines. So, I'm thinking that the caffeine withdrawal headache and the Nuvigil headache joined forces, ganged up on me, and pounded me straight into bed.

Today, I decided to return to my previous caffeine consumption for now. I'll give it a couple of weeks and see if I was right and the migraines were caused by a combination of the Nuvigil and the caffeine withdrawal. If I'm right, and I think I may be because I can feel a headache lurking in the back of my consciousness at the moment, then I'll wait until the Nuvigil headaches go away, and then start cutting down on the caffeine again. I'll also take it much more slowly, instead of immediately cutting it in half, I'll back down a soda at a time. Also, I need to figure out what I did with my caffeinated peppermints, since I can use one of those to take the edge off while I'm weaning myself down--3 of them provide the same amount of caffeine as a can of cola.

So, lesson learned. And a question: For those of you who are taking or have taken Nuvigil, do you remember how long it took to get past the headaches?

#2 Hank

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Posted 15 December 2012 - 10:08 AM

So, when I got the Dx of narcolepsy, I decided it was finally time to get around to making a few diet changes I'd been waffling about for ages: reduce sugar intake, cut out the artifical sweeteners and the caffeine, start drinking more water.

I've tried cutting out caffeine in the past, and ended up just cutting the amount of caffeine I consume in a day ... and kind of fizzled out there. I never managed to go as far as cutting it out completely. However, I went from drinking a 12-pack of Mountain Dew a day to drinking 4-5 cans of Diet Coke: much less caffeine and artificial sweetener. And I decided that the best way to cut the caffeine out was to reduce my consumption until I was able to cut it out completely. On a normal night, I would wake up, have a can of soda while eating dinner and getting ready for work, pour another can before I left and drink it on the way to work and through the first part of my shift, and take 2 cans with me--one for the last half of my shift, and one for the drive home. Then, sometimes, I'd come home and have another while doing chores or homework before I went to bed. To cut back, I decided I would not take any soda to work with me. I cut some lemons and limes into wedges, put them in my lunchbox with my lunch, and at work I would use those to add a little flavor to water. I still had the soda with my dinner and the one for the drive/start of my shift, however, so I was cutting my caffeine intake about in half. I expected headaches, but knew I could handle them.

I didn't think about the Nuvigil headaches. I hadn't, at that point, started getting them yet. I believe, however, that they've now started, because I've had 3 full-blown migraines in the last 7 days. Now, caffeine withdrawal headaches are headaches. Yes, they hurt, and they can hurt a lot, but they aren't generally migraines--at least, in my experience. They don't come with the nausea, dizziness, sensitivity to light, sound, smell, touch ... everything. And while I've heard of Nuvigil causing headaches, I hadn't heard that they were full-blown migraines. So, I'm thinking that the caffeine withdrawal headache and the Nuvigil headache joined forces, ganged up on me, and pounded me straight into bed.

Today, I decided to return to my previous caffeine consumption for now. I'll give it a couple of weeks and see if I was right and the migraines were caused by a combination of the Nuvigil and the caffeine withdrawal. If I'm right, and I think I may be because I can feel a headache lurking in the back of my consciousness at the moment, then I'll wait until the Nuvigil headaches go away, and then start cutting down on the caffeine again. I'll also take it much more slowly, instead of immediately cutting it in half, I'll back down a soda at a time. Also, I need to figure out what I did with my caffeinated peppermints, since I can use one of those to take the edge off while I'm weaning myself down--3 of them provide the same amount of caffeine as a can of cola.

So, lesson learned. And a question: For those of you who are taking or have taken Nuvigil, do you remember how long it took to get past the headaches?


When I had reduced/eliminated caffeine (coffee) in the past, I used Excedrin (or just 1/2) for the headaches. Excedrin contains caffeine and asprin. This allowed me to get used to not drinking coffee, but easing off the caffeine and controlling the headaches at the same time. You will know what works best for you. I hope your headaches clear up soon- not fun at all.

#3 munky

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Posted 18 December 2012 - 01:38 AM

Talked to my GP today--I've been getting quarterly bloodwork, because my cholesterol is borderline, and today was one of them. She also wanted to talk to me to find out about the results of the sleep study. So, we discussed the N w/o C diagnosis, the Nuvigil, whether I was experiencing any side effects, etc.

She explained the Nuvigil headaches in this way: "Nuvigil is a CNS, which means it crosses the blood/brain barrier. While your brain may like the results, it does NOT like having things cross that barrier, and that's what causes the headaches. If the headaches are not debilitating, and you keep using the medication, your body will acclimate to it and your brain will stop complaining about it crossing that barrier."

A very simplistic way to describe it, certainly, but also very easy to understand!

Also, she told me not to try to cut out the caffeine until the Nuvigil headaches have stopped for at least a week, and then to cut the amount very, very slowly--by 1 daily soda every 2 weeks, because even after I've gotten past the headaches, the caffeine withdrawal headaches may well be exacerbated by the medication.

So, I feel much better. The Nuvigil headaches alone haven't been much of anything at all, so far. It's more like an almost-headache. I can feel a headache lurking in the back of my head, just waiting to pounce, but it hasn't yet. Heck, it's not even enough to take any ibuprofen for.

I don't take Excedrin because I don't do well with aspirin ... and I don't take Tylenol because I took it a lot as a child for arthritis, and it no longer does anything for me.

#4 Pkay

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Posted 18 December 2012 - 11:08 PM

had headaches with both provigil and nuvigil. Couldn't take it and asked to go back to Adderal

for me the headaches were very similar to the headaches I get from drinking wine (even casually).

#5 munky

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Posted 19 December 2012 - 01:10 AM

Perhaps it has something to do with my unusually high pain tolerance, but headaches just don't bother me if they aren't migraines. Yes, they can hurt a lot, yes they can make me miserable, but I can take some ibuprofen and at least take the edge off the worst of them (not migraines), and go about my day.

Then again, I've been prone to headaches all my life, though migraines are rare. I was diagnosed with osteoarthritis in my ankles when I was 6, my knees when I was a teenager, my left shoulder, wrists, and fingers when I was in my late teens/early twenties ... so I've been pretty much in some kind of pain my entire life and like anything else, you build up a tolerance for it. You learn to set it aside, live with it, whatever.

I'll never forget when I was diagnosed with carpal tunnel in my right wrist. Neurologist did a nerve conduction test that clearly showed it. He sent me to an ortho to be treated, and the ortho told me he didn't believe I actually had it because I wasn't "in enough pain" (his words). He told me if I had carpal tunnel as bad as the tests showed, I should be in complete agony, and the stupid little chart where you rate pain from "no pain" to "the worst pain I can imagine" didn't show that. I should have been in the "worst pain I can imagine" category. My answer was to smile at him and say, "Doc, let me put it this way. If you were in as much pain as I am right now, you would probably be a quivering, sobbing lump on the floor. And "the worst pain I can imagine" would probably kill you. So get over yourself, get out your cortisone shot, and we can both go on our merry ways."

So maybe that makes it different for me. The headaches aren't that big a deal to me because, as the Black Knight said, "I've 'ad worse!" But to others, they may well be intolerable. I'm just glad I can tolerate them, because there's a chance I can stick with this and only have to take the one pill a day. I hate taking pills.