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?

15 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.

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