Narcolepsy and Nicotine

When I first went to Narcolepsy’ Networks patient conference in 2012, I had never met another narcoleptic.  In fact, I in part went to the conference to meet my good internet friend and kindred spirit Heidi Lindborg over at the Zombie Institute.

Firstly, if you have never done so, I would highly recommend meeting another narcoleptic. And, meeting another narcoleptic at the patient conferences every year gives you an opportunity to meet more than one! For me, finally meeting someone that really & truly understood my sleepiness and had adopted some of the same lifestyle accommodations that I had was beyond an emotional experience. It was like meeting a long-lost sibling.

One of the first things I noticed about narcoleptics is that we tend to try and find stimulation wherever we can get it; and we must undergo these measures to simply function (and especially to get up at 7:30 AM for breakfast and seminars).

Sure, we have our prescription pills, coffees, Five Hour Energies, and carb-loaded sugar-drinks to keep us going, but that just doesn’t always cut it. What does seem to cut it are cigarettes. I have never seen more smokers gathered on one place in my life than at the Narcolepsy Network conference.  There were Camels, e-cigarettes, nicotine patches and nicotine gum (my personal preferred method).

So what gives? Is it just the fact that it’s a stimulant? Or could it be that nicotine is a “special” stimulant for narcoleptics?

After that first patient conference, I started asking opinions and reading up on what nicotine does to wakefulness, and I was totally stunned. What I found was some scientific literature to support nicotine as an acceptable (and anecdotally preferred) stimulant for narcolepsy.

How might nicotine help us narcos?

1. Getting our *ss up in the morning. Did you know that normal people don’t have to force themselves half-awake, drink coffee, take a Ritalin, go back to sleep and then “wake up for real” half an hour later? No, it’s true. Normal people don’t do that.  Sleep inertia is one of the most frustrating parts of narcolepsy for me, and in my opinion greatly contributes to the “lazy” stigma we face.  Not only that, but most people aren’t so angry in the morning either.

Anyway, these two doctors in Tennessee had a 17-year-old male narcoleptic patient that they had some trouble treating.  Like a lot of other narcoleptics, his morning sleep inertia was so bad that he couldn’t wake up to take his stimulants and go back to sleep to wait for them to kick in (on top of that he was “combative” if you did try to wake him. The solution? Nicotine patch!

The genius plan these two doctors came up with was for Mom & Dad to sneak in this kids bedroom, slap a 14mg nicotine patch on his arm, wait 20 minutes & rip it off.

Just for comparison for the non-smokers out there, one cigarette has about 1-3 mg of inhaled nicotine. So this guy got a mega-dose for never having been a smoker.

Note: he is reported to have successfully graduated highschool and not been kicked out for truancy thanks to the patch.

2. Warding off EDS in general.

In another study, researchers surveyed narcoleptics about nicotine use.  In this particular study, apparently all narcoleptics who smoked asserted that smoking reduced EDS, and one woman even claimed that it helped her cataplexy.

I’ve spoken with many narcoleptics who no longer use cigarettes and prefer e-cigarettes (way to go!), and the effect seems largely due to the nicotine as opposed to smoking itself.

3. Less sleep after eating.

Smokers also have impaired glucose and lipid metabolism after eating. Taken one way, this means that smoking is bad for you. Taken another way, it means that smoking may help mitigate some of the postprandial (post-meal time) sleepiness narcoleptics often experience.

4. Attention. Pay attention. FOCUS!

Smoking might also help us pay attention. Nicotine has been demonstrated many times previously to enhance attention and nicotine patches have been used for cognitive deficits in other disorders.

In addition, attention deficits have been demonstrated in narcoleptics and are a common complaint, although everyone used to think it was merely a symptom of the sleepiness.

In a recent paper published in The Journal of Neuroscience, orexin and nicotine were shown to excite the same neurons in the prefrontal cortex. This is important because these projections are necessary for some kinds of attention.

5. Get your [anti] self under control.

Certainly, smoking itself exacerbates inflammation without a doubt, and probably contributes to the progression of some autoimmunities, although may be protective for some others (reviewed here, here, here, and here). Whether the immune suppressive effects of nicotine itself is at play in these cases of supression is not entirely clear.

Smoking has been demonstrated to be associated with decreased IgG levels (mostly IgG2), and nicotine replacement lowers only IgG4. Narcolepsy has also been associated with decreased IgG1-3 levels and increased IgG4 levels. In addition, narcoleptic smokers have even less IgG than normal smokers (although whether they also specifically have lower IgG4 has not been determined).

This is entirely speculative, but if elevated IgG4 is a negative event in narcolepsy, maybe smoking and nicotine replacement therapies effects on IgG4 could bring these levels down to “normal?”

 6. Orexin Activation!

Nicotine administration has also been demonstrated to directly activate orexinergic neurons. So, if you have some orexinergic neurons left they are activated (and presumably increase orexin production)… and, there’s nothing more anti-narcoleptic than upping orexinergic neuron activity!

So, should all narcoleptics be smoking? Absolutely, not. But there is some data to suggest that nicotine could have beneficial effects on performance, attention, and wakefulness in narcolepsy, and could provide some clues as to why so many of us are seen lighting up at the conference.

8 thoughts on “Narcolepsy and Nicotine

  1. Have I told you lately how wonderful you are?
    Thank you thank you thank you for writing this. Great research.

    I personally love the ecigs.
    Just want to add, if you do use oral nicotine- gum, snuss, ecigs and the real ones- you need to do antibacterial periodontal maintenance. It does seem to promote gum disease.

  2. Hello!!! Great article! I am just weaning off Xyrem and still on adderol. However, I am getting married in December and we want to start a family right away. I know both are terrible in pregnancy. But I still have to work and need a stimulant. How are nicotine patches and pregnancy? I can’t find much on it. I also eat Paleo and exercise daily but am still in a fog and feel like a cloud is following me. I began to be anxious and depressed with Xyrem. I am stressed bc of moving and marriage prep and need to find balance with my narcolepsy (just diagnosed in April) – any suggestions???

    • I would say, based on current research, that nicotine in all forms should probably be avoided during pregnancy. I found that transitioning to a full autoimmune protocol with the paleo really helped to identify other food triggers (I also have since learned I can not tolerate eggs very well, or foods with a lot of MSG).

  3. Having been diagnosed with Narcolepsy for 27 years it has been a wonderful experience. Lol. Started at 13 on Cylert which was removed from the market by the FDA roughly about 8 years ago. Switched to Provigil which worked good the last seven years until I lost my health insurance and found out that months supply of Provigil cost $540 without insurance. For the past year I have been chewing Camel Snus. The Frost flavored ones. That hit of nicotine works good and they are small enough that no one can tell you are chewing tobacco. Found this article great info. Had been wondering if anyone else had success with nicotine products.

  4. Just for the record I developed Narcolepsy within two hours of putting on a nicotine patch for the first time. There is definitely a link but in my case it was catastrophic rather than helpful. It was my trigger.

  5. I’m only 14 now,an I got diagnosed with narcolepsy an cataplexy a year ago…It took a while to be diagnosed ad the doctors were just saying it was my diet or my age but in the end it wasn’t it was my narcolepsy an people would make fun wen I laugh as the muscles in my face would drop And I’d be looking for at thing I could hold on to to keep me up beng diagnosed was a good thing for me as I had a reason for why I was falling asleep and a reason for the way my body goes week with different emotions,I soon got put on to the medication provigiland venlafixe at first it wasn’t agreeing with my body I’d be very sad an have strong thoughts…I’m not a heavy eater neither which didn’t help as I only have the medication in my system I did have some reactions with my teeth jittering etc but I soon agreed with this medication I know nobody with the Same condition as me I have never met someone with the same condition as me an I would love to it would be meeting someone who is the same as me,my parents don’t want me smoking as nicotine is known as to be unhealthy but it helps with my anxiety,if anyone with this condition is willing to contact me and talk about things that help there cataplexy an narcolepsy that would be a great help !

  6. Here’s an article about how nicotine stimulates the same receptors that are stimulated by hypocretin (orexin). This is the chemical that is missing in narcoleptics.

    http://www.jneurosci.org/content/25/21/5225.full

    I found out I had narcolpesy earlier this year and googled hypocretin receptor affinity and came up with nicotine. I tried a piece of nicotine gum and after about 40 minutes I was more alert than I had been in years.

    I don’t advocate smoking, but nicotine can be used without cigarettes. I find the effects are a little better than modafinil [which I tried but really gave no benefit over nicotine but gave bad nausea with a decent modafanil dose. I get the exactly the same nausea with oral nicotine.

    I tried gum and patches but vaping ejuice is by far the most effective and no systemic side effects. My doctor is amazed that this works better than the expensive medicines.

    Also Vitamin D levels are depleted in narcoleptics so it seems sensible to take supplementation I have started taking 10,000IU per day of D3 and it has made a small but noticeable improvement. I think it takes around 3 months to get your D levels up.

    Hope this helps

  7. I used to take an oral form of nicotine which contains a very large amount of nicotine compared to smoking. I did that for almost 10 years. I stopped for more than 1 year ago, but the cravings are still there. I dont think they will ever stop.

    I agree that the narcolepsy is hormone fluctuations and that its plausible to controll it by controlling those fluctuations.

    So the bottom line is “It helps you control your symptons”.
    I fall asleep no matter what drug i take. The only difference is that the drugs “numb” the sleepyness – i dont feel it, but i still fall asleep if i relax.

    So in my mind its the same with or without the medications, because they basicly work as painkillers (only for sleepyness)
    I would rather be sleepy than taking all those drugs, because by the end of the day the drugs make me feel worse. They give you random headackes and makes you feel shitty if you go a couple of hours without them.

    Take a job where you can fall alseep and still keep high productivity, and they wont care. All that matters in the end is how much money you make anyway.

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