Friday, November 27, 2009

Narcolepsy, Migraines, and the Migraine Threshold

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(image from www.howtocopewithpain.org/blog/316/migraine-statistic/)

As my birthday present, my husband recently took me to Munich for a few days. 

What did I do for one of the three days?  You guessed it: I lay in bed with a terrible migraine, silently praying for the pain to end and for housekeeping to leave us alone.  Fortunately, we still had a few days to see the city, but it was still not fun to miss a day.

If you have Narcolepsy and get migraines or headaches, welcome to the club.  It turns out, you’re not the only one. 

According to one study done in Germany, Narcoleptics get headaches and migraines far more frequently than non-Narcoleptics. 

Having interviewed 68 patients with Narcolepsy for headache symptoms, the study found that a whopping 81% of participants reported headaches that fit the diagnostic profile and 54% of the patients had the profile for migraine (64% women, 35% men).  That is much much higher than stats for the general population.

Even stranger, though, was the finding of another study that said that on average a Narcoleptic who gets migraines or headaches will start to get them about a decade after they first started showing Narcolepsy symptoms.  As one article points out, this suggests that there is some connection between migraines in Narcoleptics and having Narcolepsy.  This was news to me.

Skeptical (it does sound a bit strange), I did the math myself, and was shocked to discover that I fit the ‘migraines after a decade’ theory almost exactly: I started getting migraines about 10 years after first showing symptoms of Narcolepsy.

Years later, although I still can’t imagine why Narcoleptics would get headaches 10 years after getting Narcolepsy, I have come up with a theory on why they might get more headaches and migraines than the average American.

My hypothesis is simple: I think the “migraine threshold,” or the number of “triggers” that must build up before one gets a migraine, is simply lower in Narcoleptics because we don’t get enough refreshing sleep (or because of the EDS that is part of Narcolepsy).  In other words, it may take fewer migraine triggers (such as food, stress, or the weather) for a Narcoleptic to get a migraine, compared to someone in the same situation who doesn’t have Narcolepsy.

I recently read a book on migraines called Heal Your Headache, whose basic premise is this idea of the migraine threshold.  The book then goes on to detail the ways you can raise your threshold so you no longer get migraines (higher threshold = less likely to get migraines).  In the book, Buchholz, the author, explains at one point that your sleep habits (and especially how much sleep you get each night) can be a migraine trigger, lowering your threshold and potentially making you more likely to get a headache.  Apparently not getting enough sleep is a migraine trigger for some people.

When I read this book, I thought to myself: well, not getting enough sleep isn’t my problem.  I always get at least 8 hours at night! 

But today it occurred to me that this (the number of hours I sleep) is besides the point: sure, a Narcoleptic might get what should be ‘enough’ sleep at night, but the quality of that sleep is going to be relatively low, leaving them still tired after the recommended number of hours.  Regardless of their nighttime sleep, a Narcoleptic is going to be tired during the day.

Put simply, one way to look at things would be to say that Narcolepsy (like lack of sleep for the average person) itself is a trigger that lowers one’s migraine threshold, resulting in more Narcoleptics getting migraines and headaches.

I’m not a doctor or a researcher, but I think this makes sense.

The good news is that this book details ways you can lower your threshold, including the migraine elimination diet that has made the book famous.  I am still trying this diet, which is quite restrictive, but I can say that since I’ve been on it I’ve gone from having at least one migraine a week (sometimes for multiple days) to only getting them maybe twice a month.  I’m hoping that if I start following it more strictly, I’ll finally stop getting headaches all together :-).

What about you?  Do you also get migraines or headaches?  How long have you had them and how do you deal with them?

13 comments:

  1. Reading this blog post is so comforting - to know that someone else is having the same problems...and doing the same research. I just bought that book on amazon this morning after having a migraine for the last 20 days in a row :( Do you like the book?
    I too have Narcolepsy (without cataplexy) and I DEFINITELY think any change in sleep triggers one. However, as you expressed in your post- us Narcoleptics ALWAYS feel like we didn't get enough sleep.

    It's so terribly frustrating. Are you on topamax? My doc wants me to be on it...but I don't know how it will do in terms of making me even sleepier!

    Good luck to you and thank you for posting - I need to read the rest of your blog!

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  2. Hi Jalinz,
    I love the book. I have to warn you, the migraine diet part, which is the only part i've really used so far- it is quite difficult to follow but it has helped for me. recently i was so sick of doing it and so i tried to add back in some things that are forbidden, thinking that it would be okay - but i've had a bunch of headaches since (more than normal). it seems to help me. i need to implement all of the other suggestions of the book, plus i need to start doing the diet perfectly. you'll discover that you almost can't eat out or use any processed foods on the diet- however some bad for you foods are okay.
    I've tried a few meds for the migraines, also acupuncture and a chiropracter and massage. the massage helped a bunch but i still had frequent headaches, but the meds never seemed to help all that much. the preventive meds i took at one point helped some but i thought they made me really sleepy, until i went off of them and felt the same...
    if i can't make the headaches stop from making more changes i will have to start taking preventive meds...
    i still get migraines on this diet, however i get them much worse and more frequently without it and i will also get daily headaches (not migraines) without it...
    good luck!

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  3. Ellie,

    Thanks for writing back! Reading your blog makes me laugh - so many of your thoughts and experiences are similar to mine! It's really comforting, I cannot say it enough, thank you!!! I'm 26 too by the way. My name is Lindsay, I'm in NJ.
    Update: I just finished the headache book and started the diet. I'm on 50mg Topamax bid now. I need to get rid of these migraines if its the last thing I do so I'm going to be strict, but you're right...its not going to be easy! The hardest part for me is not reaching for the Relpax or Excedrin Migraine or caffeine which I am so used to taking (which work so well). I am sitting here in throbbing pain, just envisioning all of the excellent ratings this book got on amazon...thinking wow...I hope I made the right choice by trusting reviews on amazon.com! I am praying this is worth it, but I really have no choice.

    Narcolepsy is bad enough. Narcolepsy with migraines is the worst! At 26 years old I should be enjoying my first few years of marriage, going out with friends, traveling the world, hanging out at night...but instead I'm in bed by 10pm on weekends and napping all Saturday and Sunday.

    We will fight these migraines! I Dr. Bucholz is onto something amazing in this book and I look forward to hearing of your success as well as sharing mine :)

    - Lindsay

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  4. Excellent topics, I really like this topics. Can you please publish more articles? After long searching I found this online that, the best chiropractic clinic helps people in Lawrenceville GA with back pain, neck pain, headaches. Call their office and speak to any one of their friendly staff to make an appointment for a FREE consultation.
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  5. Thanks so much for this blog. I'm in my 40's, and I just found out a few months ago that I have narcolepsy (also without cataplexy, but with some of the other weird stuff, like hypnagognic hallucinations). For me, a sleeping pill at night and Dexedrine in the morning makes me feel better than I can remember feeling in 20 years. I've also always had a lot of headaches, and some migraines, but I never associated the two problems. Here's the interesting part that's relevant to your post: I went COMPLETELY off caffeine when I received the narcolepsy diagnosis and started on Dexedrine. I had always experienced a caffeine headache if I didn't have a cup or two in the afternoon. I was surprised at how easy it was to quit this time. NOW I notice that any day where I forget to take the Dexedrine in the morning, I get a headache...and it feels exactly like the caffeine headache of old, even though I am caffeine free. When I noticed that, I googled narcolepsy and headaches, which brought me here. Again, it's great to know that it's not just me!

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  6. Thanks for this post! I'm so glad I stumbled up on it.

    I actually started having migraines about 10 years before I can remember feeling symptoms of narcolepsy. I was about 3 or 4 when I can remember my first migraine, and my parents had to rush me to the ER. My migraines get so bad that I hallucinate from the pain sometimes.

    I'm on Topamax (100mg--50mg during the day and 50 right before bed) and it works great. In fact, I think the night dose is actually helping with my narcolepsy. I forgot to take it last night, and had horrible lucid life-like dreams all night long. When I woke up, I felt sore and more tired than when I had gone to bed (just like the good ol' days), and somehow I knew I had forgotten to take the Topamax. Sure enough, I found the two untouched pills in my pill organizer. I also woke up with a migraine, which is something that hadn't happened in ages.

    My neurologist put me on Nuvigil and Topamax. It took a long time to find a good migraine abortive but eventually settled on Relpax. My neuro also happens to be a sleep doctor, so I think he may have seen potential benefit in the Topamax, too!

    It's really rough having narcolepsy and migraines because if it's not the one, then it's always the other! Good luck, everyone!

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  7. My boyfriend (now husband) started getting chronic migraines when he was 16. He was also tired all the time and fell asleep while driving (wrecked once). He went to dozens of doctors, went on tons of different meds for the headaches, and finally just gave up on medicine and tried going natural. The medicines were causing all sorts of side effects like depression, anxiety, and general moodiness. At this point he was 20.

    His migraines kept getting more and more frequent and he kept getting more and more tired. He slept 14 hours a day, took naps, and was still exhausted with bags under his eyes. He missed classes and wouldn't respond to phone calls or text messages because he was always asleep! Last year over his Christmas break we decided to try more doctors. We set up appointments with a migraine specialist, a sleep doctor, an allergist, and his nose doctor. He had surgery to correct a deviated septum but that just helped him breathe a little better. The migraine doctor just tried to put him on another anti-depressant. The allergist put him on some other medicine. The sleep test results came back with a diagnosis: Narcolepsy.

    The medicine the doctor wanted him to go on made me nervous (Nuvigil) because it can be addictive and just makes you wired. He agreed that he would wait a few months to start the medicine while we try to come up with alternative treatments for his narcolepsy. We knew that the migraines weren't causing the narcolepsy, so that helped us get started.

    I looked on-line for natural treatments for narcolepsy and came across several message boards. A lot of people were sharing how they went on the South Beach diet or the Atkins diet and their narcolepsy symptoms almost disappeared (I remember one in particular that used to have severe cataplexy that went away!) I thought they were on to something and thought maybe it was a blood sugar level thing. One DAY of not eating any simple carbohydrates and my fiance felt so much more awake! That week I came across more posts and articles, even research studies that linked celiac disease (gluten intolerance) to narcolepsy.

    The first test for celiac disease is a blood test. There are a lot of false negatives for this blood test though, and they recommend a biopsy of the small intestine if you want to know for sure. My fiance got the blood test done and it came back with a weak positive for celiac disease. He eliminated gluten from his diet that next morning (after eating a huge hamburger with bun and drinking a beer the night before) and the results were amazing. By the end of that first week he could sleep for 7 hours a night and feel rested all day! After a month or so, his headaches started to subside! He still gets migraines, but they are not NEARLY as frequent as before. We are still discovering new things that have gluten in them. You really have to be rigorous about reading every ingredient label, and even then it isn't always called "wheat" or "gluten."

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  8. To the last poster:
    It's great that your fiance is feeling better! However, I have to disagree with you about what you said about Nuvigil: it's exactly what you said it isn't - you said that it makes you wired and can be addictive, but in fact, the great thing about nuvigil, compared with traditional stimulants, is that it is not addictive and doesn't make you feel wired like a traditional stimulant. It's one of the better Narcolepsy meds, and yes, while of course no one likes to take drugs, without them, most Narcoleptics have trouble having much of a life... If your fiance is still really tired, I would encourage him to try one of the narcolepsy drugs, as there really isn't any alternative therapy that alone helps much besides drugs... notice that I said alone - most Narcoleptics are trying alternative stuff IN ADDITION to drugs...
    I actually don't do the migraine elimination diet anymore - for me, a low carb, low glycemic index diet traditionally used for epilepsy called the low glycemic index treatment (not diet) has reduced my headaches by about 50%...
    all the best!

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  9. I am also a narcoleptic but I am not on medication. After some bad side effects of taking medicine back when I was first diagnosed when I was 18 (I'm now almost 40), I have decided to not medicate until I absolutely need it. Of course this means that I don't drive, but I live in Copenhagen and I mostly bike anyway. I leave the driving to my hubby. I also only have a part-time job which allows me to get the rest I need.

    I have begun to get what I call "narcolepsy headaches". I would say that I started getting them about 2-3 years ago. So I don't fit the 10 year profile, since I know that I've suffered from narcolepsy for at least 25 years now. And I wouldn't call them migraines, but I am worried that it will develop into that. Sometimes I just feel weak in my head and I feel that it has absolutely nothing to do with how much rest I've gotten. I wonder if it is some kind of delayed reaction to stress because there is no logical reason why I get them at the times I do. Do you experience that your symptoms get worse the older you get? I don't seem to be able to do quite as much as I could even just 5 years ago. Then again, I am almost 40 :)

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  10. I am a narcoleptic, I'm 18, and will be a senior in high school in about a month. I was diagnosed about a year ago, the beginnning of my junior year. Narcolepsy has been really hard for me. No one understands what I go through, especally my dad. Every since my freshman year I have missed A Lot of school, and we never knew why until i was diagnosed. My dad thinks i'm just faking, and it's just hard to explain to him. Not only is the narcolepsy hard being in high school, and starting college in a year, but I also have terrible migraines. I have had headaches everysince my freshman year, when evrything started. In the last year they have gotten so bad that When the pain gets to its most intense part I cant even function. Before this year I had headaches, but it was never an actual pain in my head, but now the pain is unbearable at times. I get the head aches every single day, most days I get them a few times a day, they just come and go. My neurologist put me on nuvugil when he diagnosed me. It worked really well for the first few months. I had so much energy, and my grades shot up! they went from D's to A's and B's. My freshamna dn sophmore year I have almost straigh D's, then my junior year when on the nuvigil I had mostly A's all year with a few B's, which worked out great, its helping me get into college. But now the nuvigil just doesnt seem to do anything anymore, and my headaches are worse than ever. We recently figured out that I am allergic to "triptan" which is in most of the medications the neurologist perscribed to help the migraines. At my last appt. My neurologist told me he just didnt know what to do to help me anymore, so he refered me to a new specialist. Hopefully the new doctor can help in some way, because I still have one more year of high school and 4 of colege! I'm going to school to be a social worker, so hopefully I can help kids like me, beucase it's hard when you have no support.

    I was just wondering if you knew of anything I could try? At this point, anything could help!

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    Replies
    1. Taylor,
      If you've only tried nuvigil, then you've only tried the tip of the iceberg of narcolepsy medications - the next to try would usually be something like concerta and then if that doesn't help, xyrem, which helps a lot of people but is difficult to get because of price and can have bad side effects for some people. it sounds like you need to find a sleep doctor who is very familiar with narcolepsy (not all of them are!). i could go on and on with advice - if you're reading this and interested, e-mail me for more and we'll talk, i'd love to help. and with the migraines, don't give up just keep trying new things and i find it doesn't hurt to talk to people, it seems like everyone in the universe has migraines, lol.
      help is out there! don't give up!

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  11. Hi Ellie,
    I know this post is old, but I came across your blog researching narcolepsy for the first time. I went to my doc because I have been anemic in the past. One month ago my bloodwork came back borderline so they suggested an over the counter iron and a retesting in a month. I was taking my iron faithfully for one month, more extended periods of sleep (might be in my head, but I feel like the iron makes me sleepy) but I was falling asleep on the highway, but not with my eyes shut, more like I could feel my brain shutting down and there was nothing I could do to stop it. I would pull over at a Sbux, use the bathroom and grab a water or coffee and continue usually with no trouble. I wondered if I had celiacs disease as I know any sort of gluten aggrevates the symptoms, doc suggested narcolepsy which was a complete shock to me! I have had these symptoms my whole life (with migraines) brain shutting down in class, needing lots of naps, going to bed at 10 every night etc. etc. But always assumed it was the iron and wheat intolerance. Waiting for the bloodwork results but I will also be undergoing a sleeptrial.
    Thanks for you info, I will check back you now and again!

    (I am almost 30, married mom of 3, singer and working on my masters ;)

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  12. I am so glad that I stumbled upon this website. I am 38 and live in Nebraska. I had suffered from episodic migraines since I was about 25. October 2012 I had a debilitating migraine that knocked me down for 10 days. Taking 100 mg of Topamax every night and 800mg of Ibuprofen every 8 hours keeps my chronic migraine at about a pain level 4. I have been in constant pain since that migraine in October. I have had so many tests ran and finally yesterday I was officially diagnosed with narcolepsy with cataplexy. I have had the narcolepsy symptoms since I was a sophomore in high school.

    I am so exhausted in the morning from my movie marathon dreams/nightmares during the night. That no matter what time I go to bed I never felt rested. I couldn't stay awake during the day at my desk. There were pieces of my day that I would 'come to' and not remember what I had been doing for the last 5 to 10 minutes. I actually had an appointment to meet with my neurologist about my clumsiness and falling when I wasn't even walking.... I didn't realize that was cataplexy.

    I have not started any medications, waiting on my insurance to approve them now that I have an official diagnosis.

    I am just hoping that I won't be in pain 24/7 any longer. I don't know if the chronic sleep deprivation has just caught up with me over the years or what.

    I am also scheduled to try botox injections for the chronic migraines. We shall see if that works. I look forward to reading your blog and thank you for sharing your story!

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