Tag Archives: restless legs syndrome

Restless Legs Syndrome and Niacin Study #2: Quantified Self Meetup in San Francisco

I will be presenting results from my second self-tracking study at the Quantified Self San Francisco meetup at Microsoft later tonight in San Francisco.

Experiment

By participating in a crowdsourced study on Genomera (now defunct), I tested niacin supplementation as a potential treatment for Restless Legs Syndrome (RLS).

Methods

This experiment had two main differences from the first one. First, I tapered off my current medication, clonazepam, after ramping up with niacin. Second, I increased the daily niacin dose from 500 mg to 2000 mg, which meant that the ramp-up was also much longer.

RLS-Study2-Pickard.xls

I recorded some sliding scale measurements of RLS sensation, leg jerks, etc. in a spreadsheet (see above).

Results

Like the last experiment, niacin did not improve my RLS symptoms, even at the higher dose. However, RLS severity was less after tapering off clonazepam, perhaps due to the niacin. Since the first experiment, I also started taking an iron supplement to increase my ferritin level, which might also account for diminished RLS severity. As before, I saw my doctor after the experiment to discuss the results. We changed my medication to Mirapex, which is also commonly used to treat RLS. Compared to clonazepam, I feel more alert. The RLS symptoms remain under control, and amazingly, feeling returned to my sciatic nerve about one month ago–I can feel it all the way down to the top of my left big toe. I am unsure what this means, but after injuring my back 30 years ago it seems significant.

Finally, I wanted to mention that my psoriasis flared once I started taking niacin at 2.0 g/day. Subsequently, I read several articles discouraging psoriatics from taking large doses of niacin.

Overall, this QS journey has been worth it. I learned more about my RLS, but more importantly, how to ask better questions that improved my health.

Slides

Self-Tracking Presentation at Quantified Self Meetup in San Francisco

I presented results from my self-tracking study at the Quantified Self San Francisco meetup at WellnessFX in San Francisco.

Experiment

By participating in this a crowd-sourced study on Genomera (now defunct), I tested niacin supplementation as a potential treatment for Restless Legs Syndrome (RLS).

Methods

The protocol is based on ramping up from 0 mg to 1000 mg of niacin over one month. I had to taper off my current medication that I have taken for 10 years, clonazepam, for a week and then take nothing for a control week.

RLS_Study_Pickard.xlsx

I recorded some sliding scale measurements of RLS sensation, leg jerks, sleep, etc. in a spreadsheet (above), and worked with Genomera to create an “instrument,” a web page for data entry. I used Tonic to remind me to take niacin with meals, and Fitbit to record my sleep.

Results

Two weeks after taking niacin (500 mg/day), I did not see any improvement so I stopped taking niacin. Afterwards, I saw my doctor and we had a great discussion about the genetic factors that contribute to the disease. He also suggested that I check my ferritin level, since some people with RLS have this hidden iron deficiency. I learned that my ferritin level is very low, so I am starting an iron supplement. With luck, I will be able to report some improvement in my RLS in a future post.

Video  Slides