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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).

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

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  • 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 Restless Legs Syndrome and Niacin Presentation Transcript

    • Restless Legs Syndrome and Niacin K. Thomas Pickard Quantified Self Show&Tell #21 San Francisco, CA October 27, 2011
    • 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
    • What can RLS look like? RLS Patient Healthy Sleep PatternSource: Markus Mueller, RLS, Wikipedia 3
    • 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
    • Some previous work• “Drug” experiments (2002-2009)• MBA and $1000 genome (2009)• Coriell Personalized Medical Collaborative (2009)• 23andMe (2011) 5
    • Genomera: QS + genomics • Crowd-sourcing health discovery • Genomics meets Facebook I am sharing my genome with everyoneSource: www.genomera.com/users/ktpickard 6
    • 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
    • “Instruments” on Genomera Niacin Dosage Facial Flushing RLS SensationSource: www.genomera.com/studies/effects-of-niacin-on-restless-leg-syndrome 8
    • 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 remindersSources: www.fitbit.com, www.tonicselfcare.com 10
    • 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 washing machine 13
    • Talking about RLS with my doctor• 23andMe RLS variant: rs3923809 (AG)• UpToDate.com – has GWAS info!• “Let’s check your serum ferritin level.” 14
    • 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
    • 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
    • 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
    • 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
    • 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
    • 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