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Effects of Niacin on Restless Leg Syndrome
Objective
Testing niacin supplementation as a potential treatment for people with Restless Leg Syndrome.Description
BACK STORY: This experiment is inspired by Seth Roberts' case studies of RLS being immediately ameliorated or eliminated by niacin supplementation:http://www.boingboing.net/2010/05/17/restless-legs-syndro.html
HYPOTHESIS: Niacin will decrease the symptoms of restless leg syndrome in patients. The "medium" dose may generally be more effective, than both the "low" and "high" doses, in eliminating symptoms of RLS and avoiding side effects of niacin.
ABOUT RESTLESS LEG SYNDROME: Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations.
POSSIBLE SIDE EFFECTS OF NIACIN: Diarrhea; dizziness; headache; heartburn; increased cough, indigestion, or upset stomach; nausea; temporary skin redness, itching, tingling, or feelings of warmth (flushing); vomiting.
Inclusion Criteria
Participants must have Restless Leg Syndrome.Exclusion Criteria
Those who do not experience Restless Leg Syndrome.
This is a one month study. Participants may start this study on their own at any time.
WEEK 1: Data Gathering/Control--Take 0mg/day niacin. Track symptoms.
WEEK 2: Test "Low" Dose--Take 250mg/day niacin. Track symptoms.
WEEK 3: Test "Med: Dose--Take 500mg/day niacin. Track symptoms.
WEEK 4: Test "High" Dose--Take 1000mg/day niacin. Track symptoms.
DAILY: Track all symptoms including any side effects (eg: hot flushes) in severity (scale of 1-5, highest severity=5) and frequency. Also note all medication/supplements you take.
OPTIONAL (Find out if your cholesterol has improved as a side benefit): Take two blood lipid panel tests:
a) During Week 1.
b) 1-7 days after Week 4.
WEEK 1: Data Gathering/Control--Take 0mg/day niacin. Track symptoms.
WEEK 2: Test "Low" Dose--Take 250mg/day niacin. Track symptoms.
WEEK 3: Test "Med: Dose--Take 500mg/day niacin. Track symptoms.
WEEK 4: Test "High" Dose--Take 1000mg/day niacin. Track symptoms.
DAILY: Track all symptoms including any side effects (eg: hot flushes) in severity (scale of 1-5, highest severity=5) and frequency. Also note all medication/supplements you take.
OPTIONAL (Find out if your cholesterol has improved as a side benefit): Take two blood lipid panel tests:
a) During Week 1.
b) 1-7 days after Week 4.
Discussion
ktpickard The results from this study are posted on my blog, GeneNomad: http://bit.ly/xuxebT You can also view the data uploaded to Genomera by clicking the "Download Data" link in the Instruments box on the right. By sharing data, we all benefit. Sign-up with Genomera and learn how crowdsourced studies can enhance your health and wellness.
ktpickard End of week 1. It's amazing how much the RLS sensation varies by day, even by hour. I will begin taking niacin tomorrow...useful info about when and how much to take here: http://www.doctoryourself.com/niacin.html My (baseline) cholesterol results arrived today: 168 total cholesterol, 42 HDL. Let's see if HDL improves.
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ktpickard Yes, I am meeting with my doctor tomorrow to discuss the study and order the tests.
ktpickard Although I finished this study two months ago, I continued to take niacin at 100 mg/day. I recently re-tested my cholesterol: 170 total cholesterol (unchanged); triglycerides dropped from 58 to 26 (over 50% decrease - good!); HDL increased 14% from 42 to 48 (great!); and LDL remained the same (117). My exercise routine did not change over the past teo months, so the niacin may have influenced these improvements.
gbiggers If you edit the study and add the RLS/Niacin tracker as an instrument, others can contribute data along with yours. Let us know if you need help with it.
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ktpickard I hope to see Janet next week at the QS meetup. We'll talk about next steps...
janet I posted on a RLS group forum to see if there's any interest there from the yet-to-be-cured. In doing further reading, it looks like some RLS-ers have seen improvements with Earthing/grounding: "I myself immediately experienced the elimination of an annoying restless leg syndrome when I slept grounded and I saw how Earthing helped give substantial relief for my wife’s back and knee pain." (source: http://www.earthinginstitute.net/index.php/site/blog/Earthing_Institute_Reports/)
ktpickard End of week 3. The niacin was not working, so I abandoned the experiment on Wednesday. I went back to my original medication and am doing OK. A final note: I met with my doctor recently—he suggested getting my ferritin level checked. Ferritin is the protein responsible for storing and releasing iron. Some people with RLS may have this hidden iron deficiency, even though they do not have anemia: http://www.sleep-journal.com/article/S1389-9457%2801%2900160-5/abstract
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janet One person with RLS on a forum says: "I take, calcium, iron and Vitamin B supplements. I am on dialysis and I do blood test each month. So I noticed that when my hemoglobin and iron goes down RLS gets worse."
ktpickard My hemoglobin is OK, but my ferritin level is very low. I started taking ferrous gluconate 27mg/day about two months ago, and my energy is up. I just asked my doctor for a baseline vitamin B test. Toying with the idea that since low iron is associated with poor vitamin B12 absorption, low ferritin could be also.
ktpickard I will be presenting the results from this self-tracking study at the next Quantified Self meetup on October 27 in San Francisco: http://www.meetup.com/quantifiedself/events/34089092/.
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ktpickard Thank you for the tweet! @kthomaspickard
ktpickard I posted the video of my presentation to: http://www.genenomad.com
ktpickard This week, 23andMe released a new preliminary report on RLS:
https://www.23andme.com/health/restless-legs-syndrome-preliminary-research/
The results include 6 SNPs from 3 GWAS studies; all SNPs are included in 23andMe v3 data.
This preliminary report aligns with other RLS variants detailed by deCODEme and Navigenics (with a shout out to DIYgenomics for the comparison!)
janet One person posted on an RLS forum that calf massage works: http://www.healthboards.com/boards/showthread.php?t=866518
ktpickard Cure Together has a nice set of RLS treatments reported by their members: http://curetogether.com/restless-legs-syndrome/treatments/ae/ (Get a free account to see the entire list.)
ktpickard added the "Restless Leg Syndrome & Niacin Tracker" instrument to this study.
ktpickard We recently added a tracking instrument to the study: http://www.genomera.com/instruments/restless-leg-syndrome-niacin-tracker Thank you, Jonathan!
ktpickard End of week 2. It has been a tough week...no improvement at 250mg/day. Going to 500mg/day tomorrow. Good backgrounder on RLS (including genetic markers!) here: http://www.uptodate.com/contents/restless-legs-syndrome?source=search_result&search=rls&selectedTitle=1~42#H4
SydneyBennet Have you ever taken anything for RLS before?
ktpickard I have been taking clonazepam (.5mg/day) for the past 10 years with great success. I tried Requip a few years ago, but it did not work as well. Right now, I am only taking niacin. Other suggestions are most welcome!
ktpickard is now a study organizer.
ktpickard Beginning the RLS study today after tapering off meds for one week. For the next month, I will be keeping my data in a spreadsheet here: http://bit.ly/pT1zok Maybe some of these items could be tracked with Instruments (?)
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EriGentry Can you explain the vocal tics metric? I have not heard of that before. I suspect RLS for myself (I've kicked myself awake) but am not sure. It's interesting to note these non-intuitive symptoms.
ktpickard The metrics seem to be working, so I'll request some instruments. As for vocal tics...it's a subjective measurement. It turns out that I sometimes make a noise with the leg jerk. Go figure...
SydneyBennet joined as a discussion participant.
EriGentry Funny: My dad became interested in my work once I told him about this study. ;) He wants to know whether it works and how much niacin to take. I told him he has to do the study (and I'm not qualified to give medical advice!).
ktpickard Before taking meds for RLS, I used to kick my wife in bed. She did not like it very much. :)
ktpickard joined as a data participant
Rickson joined as a data participant
kevinburke is no longer a study participant.
kevinburke joined as a data participant
derekja interesting article today: http://www.sciencedaily.com/releases/2011/07/110714191424.htm
derekja joined as a discussion participant
EriGentry Janet, I think it would be interesting to hear your experience with RLS. Can you share? :)
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janet That sounds like a good idea. I know Seth Roberts, who was personally involved in a friend's niacin-on-RLS study. I can ask to get in contact with his friend who experiences RLS.
EriGentry How did it go? Seth was extremely helpful with Butter Mind. Hope he was able to give you some good feedback!
janet If anyone has ideas on how to recruit more data participants, toot your outreach-and-marketing horn!
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EriGentry Since you're in Mountain View, you could find someone at Stanford who studies RLS and ask them to help you do outreach
janet Thanks for all the suggestions!
EriGentry Thanks for sharing. I tweeted from @genomera. PS: Can you explain your nomadic approach to wellness? Very curious :)
ktpickard The name of my blog, GeneNomad, is a combination of "Genome" and "Nomad." Health and wellness is a nomadic journey--pitching a tent, then pulling up stakes--looking for health on higher ground. It's the journey that matters.