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Restless Legs Syndrome and           Niacin         K. Thomas Pickard    Quantified Self Show&Tell #21         San Francis...
What is Restless Legs Syndrome (RLS)?• Uncomfortable/unpleasant  sensations in legs• Often with periodic limb movements  o...
What can RLS look like?                                         RLS Patient          Healthy Sleep            PatternSourc...
Restless Legs Syndrome and me• Had it since early 20’s• Diagnosed at age 38• Taking clonazepam 0.5 mg/day• Started with 2....
Some previous work• “Drug” experiments (2002-2009)• MBA and $1000 genome (2009)• Coriell Personalized Medical  Collaborati...
Genomera: QS + genomics • Crowd-sourcing health discovery • Genomics meets Facebook                                       ...
RLS/niacin study protocol• Seth Roberts: blog post on RLS  and niacin                                     Niacin –• 0 to 1...
“Instruments” on Genomera       Niacin       Dosage       Facial      Flushing        RLS     SensationSource: www.genomer...
Data sharing on GenomeraSource: www.genomera.com/studies/effects-of-niacin-on-restless-leg-syndrome   9
I used some other instruments, too.       For measuring sleep                                                 For niacin r...
Meds go down, symptoms go upSource: bit.ly/pT1zok        11
Meds go down, symptoms go upSource: bit.ly/pT1zok        12
How well am I really sleeping?NormaltrackingSensitivetracking                          Lost fitbit in                     ...
Talking about RLS with my doctor• 23andMe RLS variant: rs3923809 (AG)• UpToDate.com – has GWAS info!• “Let’s check your se...
RLS and genetic factors• Dominant inheritance: 40%• Recent 23andMe RLS update• For me—mixed results:       2 higher-risk m...
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–...
What’s the theory? • RLS patients may have diminished   brain iron stores • Tested with CSF, MRI, US, autopsy • Iron thera...
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...
For more information• RLS  www.rls.org• National Sleep Foundation  www.sleepfoundation.org/article/sleep-   related-proble...
Questions?K. Thomas Pickardktpickard [at] pickardexpress.com@kthomaspickardwww.linkedin.com/users/kthomaspickardDisclosure...
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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: www.genomedad.com
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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: www.genomera.com/users/ktpickard 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: www.genomera.com/studies/effects-of-niacin-on-restless-leg-syndrome 8
  9. 9. Data sharing on GenomeraSource: www.genomera.com/studies/effects-of-niacin-on-restless-leg-syndrome 9
  10. 10. I used some other instruments, too. For measuring sleep For niacin remindersSources: www.fitbit.com, www.tonicselfcare.com 10
  11. 11. Meds go down, symptoms go upSource: bit.ly/pT1zok 11
  12. 12. Meds go down, symptoms go upSource: bit.ly/pT1zok 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)• UpToDate.com – 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: www.diygenomics.org 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: www.rls.org/Document.Doc?&id=605 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 www.rls.org• National Sleep Foundation www.sleepfoundation.org/article/sleep- related-problems/restless-legs-syndrome- rls-and-sleep• CureTogether www.curetogether.com Source: www.curetogether.com 19
  20. 20. Questions?K. Thomas Pickardktpickard [at] pickardexpress.com@kthomaspickardwww.linkedin.com/users/kthomaspickardDisclosure statement: Nothing to discloseSlides posted to: http://slideshare.net/kthomaspickard/restless-legs- syndrome-and-niacin 20

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