Narcolepsy, dopamine and tyrosine.

Recently, I have been intrigued by the link between dopamine and narcolepsy.  About a year ago, I had a blood test done for neurotransmitters, which indicated that I had normal serotonin, but low circulating dopamine. Nutritionally, this would indicate a deficiency in intake of L-tyrosine, or maybe a defect in the conversion to dopamine, or some other mechanism of dopamine release in the brain.

I didn’t really appreciate the bloodwork, until I realized there were signs of dopamine deficiency in family members on my mother’s side. My maternal grandfather has long suffered with restless legs syndrome, which can be caused by dopamine deficiency (and, also iron deficiency, which is important for dopamine storage and neurotransmission in the brain). Prior to going gluten free, I often struggled with restless legs, and still cannot take anti-histamines without feeling like my legs are going to dance off my body (anti-histamines are known to aggravate RLS).

I also am a runner, and thrive off of the runner’s high that I get. Running stimulates the release of beta-endorphins, which disinhibit dopamine transmission. In otherwords, running increases dopamine levels in the brain.

In addition, my mother, sister, and I have all struggled with attention deficit disorder (ADD), which has been demonstrated to be connected to low dopamine transmission.

Though not well currently reviewed in the literature, dopamine and narcolepsy appear to have a close association with one another. Orexins act on dopaminergic nuclei, which express orexin receptors, indicating that orexin influences dopamine neurotransmission. In rats, infusion of orexin increases dopamine in the brain. Additionally, increases in orexin (and correspondingly dopamine) increased the time the rats spent awake. For narcoleptics, a deficiency in orexin neurons and orexigenic neurotransmission could cause a secondary dopaminergic neuron transmission deficiency. (i.e. – if orexin isn’t released, dopamine isn’t released).

From a therapeutic perspective, dopamine agonists have long been used to treat cataplexy and excessive daytime sleepiness associated with narcolepsy.  Amphetamines (such as Ritalin) have long been used to reduce daytime sleepiness associated with narcolepsy, and amphetamines have been shown to increase levels of dopamine in the brain. In addition to the traditional stimulants, a more recently adopted wakefull-ness promoting drug, Modafinil, has also been shown to increase dopamine (and histamine) release, potentially by inhibiting the reuptake of dopamine.

In addition to conventional medicinal treatments, administration of the amino acid L-tyrosine, which is a precursor to dopamine, has been shown to positively affect symptom management in narcolepsy.  Patients were administered 100 mg/kg/day (which is about 6 grams of L-tyrosine for the average person) for 6 months, and were reported to have complete remission of symptoms.  Another study found that quantities of about 9 grams/day provided some wakefulness promoting effects, but it was not deemed a suitable alternative for use alone.  There are limited reports of the use of L-tyrosine in scientific literature, however, and no studies have been published on it’s use recently.

Another compelling  piece of the dopamine/narcolepsy connection comes from another neurodegenerative disorder, Parkinson’s disease (PD), whereby individuals lose dopamine-producing neurons in the brain. In fact, PD shares many features with narcolepsy including REM disorder and hallucinations as well as daytime sleep attacks. Indeed, it has been demonstrated that orexin-producing neurons are also lost in individuals with Parkinson’s disease, and narcolepsy has recently been implicated as a potential risk factor for PD, although it is unclear if this is an intrinsic risk factor, or if the treatments associated with  narcolepsy (i.e. long-term amphetamine use) contribute to the deterioration of dopaminergic neurons and development of PD.

Due to the compelling literature evidence that dopamine and narcolepsy are interconnected, I recently began a regimen of 6 grams of L-tyrosine a day. I have had great results so far, and have noticed a significant reduction in daytime sleepiness and  total time spent at night sleeping. I suspect that the effect will gradually wear off (I have been taking L-tyrosine for about 4weeks now), and I am interesting in speaking with others using L-tyrosine for it’s wakefulness-promoting uses; so, anyone out there?

24 thoughts on “Narcolepsy, dopamine and tyrosine.

  1. Great article! My naturopath had me taking tyrosine for narcolepsy (1000-2500 mg/day), but I had to stop because it made my thyroid levels difficult to manage. But this is making me consider another tyrosine trial.

    • Michelle, as I also have thyroid issues, I was wondering if you would mind sharing how it made your levels difficult to manage? This is an interaction I haven’t thought about, but would be interested to hear your results with it. Again, I am taking 6000 mg/day, but haven’t noticed anything that seems like my thyroid levels are off. Out of curiosity, do you have any other autoimmune stuff? I am always so interested to hear of other people with narcolepsy and other autoimmune diseases.

  2. Taking tyrosine made me slightly hyperthyroid. I was warned that this could happen because tyrosine is a precursor to thyroid hormones, so when my TSH dropped, I went off the tyrosine. However, I wonder if this could have just been a coincidence because I’ve remained off of the tyrosine, but I’m still on a lower dose of Synthroid than I was when I first started the tyrosine. I’ll report back on how things go if I start the tyrosine again.

    My confirmed autoimmune diseases are Graves’ disease and narcolepsy. I also have a lot of inflammatory-based conditions that some people are starting to think could have an autoimmune connection, such as eczema, allergies, type II diabetes, primary Raynaud’s disease, CFS, and migraines. Going gluten-free eliminated my migraines and helped my narcolepsy enormously. Eating paleo has helped everything else.

    • Michelle, thanks for sharing and do update if you start the tyrosine again! Our stories (headache, skin rashes, Raynaud’s) sound very similar… Glad you are reading and very glad to have found another gluten free narco! Good luck with everything!

    • I have confirmed narcolepsy. Glad to hear someone took notice of the thyroid levels. All the studies I read where those with narcolepsy were given L-tyrosine, not one listed thyroid tests.

      Over 20yrs I have taken pseudoephedrine for narcolepsy symptoms. It is a NET substrate. My TSH increased over 6. Thyroid meds increased my heartrate far to high so they were discontinued.

      I take L-tyrosine which brought the TSH back down to normal without heart rate increase. If I take a larger dose the TSH continues to drop but again with no heartrate increase. Weight loss increases but is a wasting. This is not normal for people who take L-tyrosine, even in a large dose. Not having orexin neuropeptides makes for unexpected outcomes.

  3. Gluten sensitivity and casein sensitivity seem to be related to lack of Orexins, opoid receptors, Dopamine and GABA imbalance and thence: Narcolepsy, Parkinson’s Disease, MS, Diabetes, Schizophrenia, Celiac Disease, Auto-Immune Thyroid Disease, ADHD, Restless legs Syndrome, Anxiety and Panic Attacks to name a few. If you look the terms up in any groupings you’ll start seeing many parallels. Have you tried eliminating either or both of them from your diet? It worked for me.
    I thought this slide video explained the gluten connection rather well. http://www.glutenology.net/glutenology-health-matrix-free-video/

  4. I suffer from CNS Idopathic Hypersomina & have been taking Dexamphetamine Suplate (5mg) twice a day for around 15 years now as treatment but due to an illness last year I am wanting to look at alternative treatments.

    What I am wondering is, while taking the Tyrosine, did you also continue with the prescribed drug or were you funcitional just on the Tyrosine?

    • I have not taken prescription stimulants for quite a while; so no, I did not take them together. With a gluten free diet and extensive exercise alone, I am highly functional for an individual with narcolepsy. After the tyrosine experiment (a couple of months with taking about 6-9 grams per day), I weaned myself off and now only take tyrosine if I have to work extra hours in the week or really need to focus. I quit taking the tyrosine on a daily basis due to negative effects of the tyrosine on my anxiety levels. If you still have a sleep doctor, I’d get a professional’s opinion on combining the two.

      • Im wanting to try my son on l tyrosiine as he has N he is not on any medication, he won’t take drugs. He is 16 and needs something that can help him.
        It’s hard to get him go gluten free as we don’t have that much here in NZ.

        Thanks
        Terri

  5. Pingback: Anti-Narcoleptic Vitamin Regimin | Autoimmune Patient

  6. Is “500 mg/kg/day” a typo? If my math is right, that puts me at 30.5 grams a day, not 6. I’m 135 pounds, which is ~61 kg. 500mg * 61 = 30,500mg = 30.5 grams.

  7. Pingback: Paleo Narco: Applying Paleo Principles to Narcolepsy

  8. Are you still taking the 6 grams per day? What have been your results over time? Did it become less effective?
    I’m starting at 500 MG and working my way up. (on empty stomach with vit C and B50 complex (which has 50mg B6)) Some days the difference is huge, others it has no effect.
    Looking forward to hearing your results.
    Thanks!

    • Hi there John, I am constantly changing up what I’m taking, but am currently not taking the 6g / day of tyrosine. I found that after extended use it contributed greatly to anxiety. Now I just take 1-2 g in the morning (before noon) on days I need an extra boost. I didn’t become less effective over time, though.

  9. I’m a doctor living with Narcolepsy since 2004. L_Tyrosine (a supplement), really helps with augmenting the effects of standard recommended treatment …
    1. Modafinil
    2. Ritalin
    3. Anafranil, Prozac & Effexor
    4. Propanolol,
    5. Night time REM sleep induction with GABA_A & GABA_B agonists.

    I take 6g L_Tyrosine per day, in two divided doses before daily physical therapy, (circuit, weights & cardio exercise drill).

    Check my TSH level monthly and adjust the Tyrosine dose as necessary.

    Thanks.

    Sid.

  10. Im 24 and have ADHD, Anxiety, RLS (all indicating low dopamine) and Raynauds and Factor V (prone to blood clots). Everything I’m seeing says L- T can help all of these but some dopamine increasing perscription drugs says don’t take if you have Raynauds or clots. Why? Can someone explain the relationship of all these. I know Raynauds can be autoimmune, how does autoimmune relate to dopamine?

    • My educated guess (I was a scientist) as to why one is not to take dopamine-releasing drugs if one has Reynaud’s or is prone to clots, is that such drugs, being stimulants, cause constriction of blood vessels. You wouldn’t want this if your hands/feet are turning blue and cold. 🙂 Narrowed vessels would also make clotting tendency more dangerous since complete blockage could more easily occur. So this answer doesn’t involve the autoimmune angle. I don’t know if it is relevant in this case.

  11. My father has Narcolepsy, I am clinically diagnosed as ADD, with OC tendencies. I stumbled on to this link while researching why I develop excellent focus and motivation if I take 1/2 of a pain pill. I am prescribed Vyvanse for the ADD and was told that it is a medicine that does not have to be taken daily. I experience extreme sleepiness now when I do not take it. In studying the effects of pain medication, and the increase in dopamine, I started linking things. I am finding that the tremors I have are also associated with low dopamine levels. My next course of action in self diagnosing is to try the L-T. I will report back on my findings. That being said, I have a 22 yr old son that demonstrates characteristics similar to both my own and my fathers. I am seeing that these can be genetically predisposed, my question is, is there any correlation between any of this and the fact that we are all left handed?

  12. My name is matt, ive got 2 kids and a wife that have trouble understanding my narcolepsy along with nearly every other person I know. That catapults anxiety tonsuch a high degree esspecially when I am in need of certain things at times and am denied. I never truly fell normal and have tried to find outlets. The only time I feel normal as I can tell is during times of axrenaline rush. If I ride a f o urwheeler or sport bike on the road. If I was falling asleep while driving a car I knew I could speed up and act like I was suddenly racing on a track since I normally.drive on unoccupied backroads. At those times I feel calm, relaxed, awake, focused ( only thinking of the moment looking for signs of another car ,deer or how to take that corner with speed n traction) by the time I get to a public road that rush helped me finish my drive to destination trouble free. I dont know why those activiities do this. If I am intimet with my wife and things heat up to say, I will be awake for a time after. If we are just be relaxed n intimate I can fall asleep before it starts. I have had a sleep study and
    Been diagnosed with narcolepsy exhibiting nearly all symptoms except the worst of cateplexy. I dont trust myself most times but if offered a chance to ride a fast motorcycle I wont hesitate with confidence. When I vet anxious and stressed and start feeling tired and confused I become angry now wanting to beat my fist in something or pick something up and break it. I do not do these things but those feelings are followed by a numbness of feelings and desire to not care. I then sleep horrible waking from dreams every few minutes and immediatly falling back to dream, definatly not sleep. I then hide from everyone debating to leave my room to use the bathroom until I feel better sometimes finding a different way to pee since I seem to pee every 2 minutes when I get in this state. I tried buying a fourwheeler to help continuously outlet my stress and anxiety but no one thought or thinks now that it would be worth it. I am the only one in my corner and would love to move to a.small villige in the rainforest. Anyone else feel this way? Lol. I have had accounts when taking aderall where I suddenly remeber things I learned such as reciting quotes from the book”moby dick”, but cant seem to remeber them before or now. I become manic taking adderall and it stops working quickly. Ridilin seems to be melower and continously helping more often. Moxifinal doesnot work at alll even if I took the entire bottle in a few days, I figured if 10 dont wake me up then what is it for. Amodifinal for some reason works but not everyday, specific thc helps keep me awake n focused while lowering anxiety.while some thc strands make my axniety.skyrocket but help me sleep better sometimes. Any drs out there that can figure me out cause my dr.and myself are clueless cause I exhibit all symptoms of it but only the worst emotions ( kinda like A-typical depression) make my symptoms worse to uncontrollable

  13. Hi…. I am so glad to have found your site as it is speaking so clearly to symptoms I’m experiencing that are connected to my having been unable for two years nine months to stabilize my thyroid levels.

    I have suffered from thyroid hormone resistance and consequential vertigo when T4 medication began to flood, not be taken up by receptors and synthesized into T3. One siege of vertigo had me collapsed on the floor, holding on for dear life, for five hours before help came.

    In the last two months episodes of narcolepsy have repeatedly sucked me into overwhelming collapse. This did not begin, however, until after I began taking tyrosine as an aid to thyroid metabolism. Now I find I am dependant on the tyrosine. If I don’t take it……… I simply cannot stay awake.

    My thyroid condition is Hashimoto post RAI ablation decades ago. I believe that both my father and I suffered from dopamine insufficiency. We had RLS and had depressions of the lethargic variety. (He never developed PD)

    My situation became expreme in the first week of a fluoxetine scrip when I totally capsized into rapid cycling of catatonic-like depression alternating with a totally normal state/no mania/no hypomania. I was helpless against this close to a year and a half before it “stabilized” to cyclothymic levels. It continues to this day. Three days alive. Three days dead.

    I read that increasing serotonin decreases dopamine. I’ve always wondered if this is what happened. Does anyone have any info about this and how Hashi, vertigo and narcolepsy interplay with the tyrosine conversion cascade?

    Yes. I’m a lefty, have ADD and fibromyalgia.

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