Restless Legs Syndrome and Niacin


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Self-tracking study to measure the effects of niacin on restless legs syndrome (RLS).

Published in: Health & Medicine
  • Thank you for your kind comments. The 'uncomfortable' factor was simply the absence of meds controlling my RLS. Interestingly, I experienced a strong rebound effect after returning to medication.

    Fortunately, I have a 'quant-friendly' doc who has been very supportive of these activities. For example, I am returning next week for some lab work to see if the niacin therapy has improved my HDL levels.

    Ultimately, my goal is to see if self-tracking and crowd-sourced health discovery can significantly contribute to healthcare and wellness.

    Incidentally, I just posted a video of the presentation to my blog:
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  • Fascinating presentation and good luck with the iron therapy. I'm interested in the lines where you say that 'QS can be uncomfortable' and 'Work with a quant-friendly doc'. As a physician I know that many of my colleagues are wary to provide patients with what they would consider TMI.... (sigh)

    But I can't imagine that a physician would be put off by this level of data collection in the hopes of solving a problem. Personally, I would love for my patients to be this committed.

    Thanks again for sharing.
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Restless Legs Syndrome and Niacin

  1. 1. Restless Legs Syndrome and Niacin K. Thomas Pickard Quantified Self Show&Tell #21 San Francisco, CA October 27, 2011
  2. 2. What is Restless Legs Syndrome (RLS)?• Uncomfortable/unpleasant sensations in legs• Often with periodic limb movements of sleep (PLMS)• Symptoms usually worse at night• Affects 5–15% of the population
  3. 3. What can RLS look like? RLS Patient Healthy Sleep PatternSource: Markus Mueller, RLS, Wikipedia 3
  4. 4. Restless Legs Syndrome and me• Had it since early 20’s• Diagnosed at age 38• Taking clonazepam 0.5 mg/day• Started with 2.5 mg/day (!) clonazepam 4
  5. 5. Some previous work• “Drug” experiments (2002-2009)• MBA and $1000 genome (2009)• Coriell Personalized Medical Collaborative (2009)• 23andMe (2011) 5
  6. 6. Genomera: QS + genomics • Crowd-sourcing health discovery • Genomics meets Facebook I am sharing my genome with everyoneSource: 6
  7. 7. RLS/niacin study protocol• Seth Roberts: blog post on RLS and niacin Niacin –• 0 to 1000 mg/day niacin over Vitamin B3 four weeks• Track “flush,” RLS and PLMS severity, sleep hours daily• Check cholesterol before and after (HDL benefit from niacin) 7
  8. 8. “Instruments” on Genomera Niacin Dosage Facial Flushing RLS SensationSource: 8
  9. 9. Data sharing on GenomeraSource: 9
  10. 10. I used some other instruments, too. For measuring sleep For niacin remindersSources:, 10
  11. 11. Meds go down, symptoms go upSource: 11
  12. 12. Meds go down, symptoms go upSource: 12
  13. 13. How well am I really sleeping?NormaltrackingSensitivetracking Lost fitbit in washing machine 13
  14. 14. Talking about RLS with my doctor• 23andMe RLS variant: rs3923809 (AG)• – has GWAS info!• “Let’s check your serum ferritin level.” 14
  15. 15. RLS and genetic factors• Dominant inheritance: 40%• Recent 23andMe RLS update• For me—mixed results: 2 higher-risk markers 1 lower-risk marker 3 typical markers Source: 15
  16. 16. What about ferritin?Hemoglobin carries O2 in blood 13.8–18 g/dL for males 12.1–15.1 g/dL for females My hemoglobin: 15–16 g/dL HemoglobinFerritin stores iron 30–400 ng/mL for males 13–150 ng/mL for females My ferritin: 14 ng/mL Ferritin 16
  17. 17. What’s the theory? • RLS patients may have diminished brain iron stores • Tested with CSF, MRI, US, autopsy • Iron therapy may improve symptoms RLSSource: 17
  18. 18. What did I learn?• Niacin did not improve my RLS• Low ferritin may be the cause• Work with a quant-friendly doc• QS can be uncomfortable• New talk if iron therapy works 18
  19. 19. For more information• RLS• National Sleep Foundation related-problems/restless-legs-syndrome- rls-and-sleep• CureTogether Source: 19
  20. 20. Questions?K. Thomas Pickardktpickard [at] statement: Nothing to discloseSlides posted to: syndrome-and-niacin 20