Caprylic acid/Octanoic acid: A possible treatment for Essential Tremors

 Over on Reddit, sarazepeda wrote: “I’ve been taking caprylic acid, and don’t wanna jinx it… (I feel like right when something starts to help, it slowly stops helping)… but it’s been almost a week and a half now and the difference is astounding.”  

Now I’m very much ‘mainstream’ in regard to the treatment of Essential Tremors, but a quick google surprised me. Caprylic acid is more commonly known as Octanoic acid.  Wikipedia concluded its article with “Caprylic acid has been studied as part of a ketogenic diet to treat children with intractable epilepsy.[13] Caprylic acid is currently being researched as a treatment for essential tremor.[13][14]”.

[13] Dose-escalation study of octanoic acid in patients with essential tremor and [14] Octanoic acid in alcohol-responsive essential tremor which lead me to a study I had previously read, The Effect of Octanoic Acid on Essential Voice Tremor: A Double-Blind, Placebo-Controlled Study.

From [13] “Recently, 1-octanol has been shown to have efficacy in treating patients with essential tremor (ET). The primary metabolite of 1-octanol is octanoic acid (OA), which is now thought to be the active substance that mediates tremor suppression.”

All this leads me to a summary position: If your Essential Tremors are alcohol responsive, you can take Caprylic/Octanoic acid food supplements and get similar results without the downsides of actual alcohol consumption (maybe)!

Caveat Emptor: I am not a medical person. My background is STEM, in particular Electrical Engineering/Applied Physics.  I have been formally diagnosed with Essential Tremors. I actively research ETs and potential treatments. Do your own research and come to your own conclusions.

[13], the “Dose-escalation study of octanoic acid in patients with essential tremor” was a study to determine the “maximum tolerated dose”.  In this study they tested doses up to 128 mg/kg and found “most frequent AE (Adverse Event) was mild abdominal discomfort.” and “Secondary efficacy measures suggested a dose-dependent reduction of tremor.” Further, “Although our trial did not reach an MTD (maximum tolerated dose), a dose-dependent effect was demonstrated in the PK/PD (pharmacokinetics/pharmacodynamics) model as well as in secondary efficacy outcomes. Future studies are needed to explore the safety in higher dose ranges and to confirm dose-dependent efficacy in a placebo-controlled design.?

 “In conclusion, our results are promising for the development of OA (Octanoic Acid) as a treatment of ET.”

There you have it. It may be effective if your ETs respond to alcohol.  It’s a food supplement that is readily available at a reasonable price.

AMA: Ask Me Anything

What use is tremor measurements?

 On Reddit Temporal_Delusion writes: “Man reading your blog is pure depression fuel not gonna lie.”

Sorry that my blog depressed you.  My only intention with the blog was to offer information without the medical speak that can be confusing to understanding the problem we have.

TD: “Especially the one mentioning forearm and wrist tremors killing fine motor skills no matter what. Mine is also affecting the wrist movement (up down) and the forearm in the right hand mostly. Testing what you mentioned to be the wing beating position for the first time was dreadful.”

My back and forth rotation of the forearm tremor (pronation/supination) is relatively uncommon in the Essential Tremor population.  More common is the left/right movement of the hand (adduction/abduction).  The most common tremor in the hand/arm is the up/down (flexion/extension) tremor of the hand about the wrist joint. I use the wing beating position as I can provoke a visible tremor on demand making it easy to measure.

Action tremors, like when you move your hand to point at an object, are stronger than positional tremors such as the wing-beating position.  Eating soup with a spoon is also an action that can provoke a tremor.  Action tremors are more difficult to measure as you have to remove the ‘action’ component to see the tremor.  So I have a lot more work to do in measurement of my tremors.

TD: "It's sad to see that since this problem is relatively rare, there is pretty much no real help in the works one can hope for. I also got tinnitus which is very similar, a lot of anecdotal stuff that helps some, but not others. Once you exhaust the long list of "try this" "try that" and nothing changed, not for the better at least... hope is in short supply."

Essential Tremors are not relatively rare.  Learned studies suggest that perhaps as many as 5% of the general population has Essential Tremors.  Most of us don’t do anything about it and many general medical practitioners are not aware of it.  For all its prevalence, Essential Tremors did not have its own medical classification until 2013. Its ‘big brother’ Parkinson’s gets more attention. Even now, many Essential Tremor studies include references to Parkinson’s. The situation is improving and Essential Tremors is getting more research attention. We live in hope.

There is some, non-anecdotal stuff that helps with ETs. Propranolol, a common beta blocker, can suppress tremors in about 50% of the ET population.  There are other drugs that work for some but with a lower success rate and with more side effects.  If you have alcohol responsive tremors, 1 drink can give temporary relief.  The Cala Trio (very expensive) can give an hour or so relief after treatment for a slightly lower percentage of the ET population.

TD: I'm also somewhat of a realist about things, some call me a pessimist. At 25 years old, I've been on the decline for the past 5 despite best efforts on multiple fronts. The world is falling apart, I just wish I was older, that this happened in my 40s 50s or 60s where I could chalk it up as "expected".

It seems that Essential Tremors is different for each individual.  The progression of this condition is one area that is poorly studied. This is mainly due to two factors.  First in the world of scientific studies, it is “publish or perish”.  To study the prognosis of conditions like Essential Tremors takes time.  Time which could be used to conduct less time consuming studies and produce more published papers.  Secondly, at present, it is difficult and expensive to conduct a multi-year study of Essential Tremors as it requires a trained clinician to assess the severity of an individual's tremors. I was hoping to address some of the problems of tremor assessment with a multi-sensor device.

TD: What would you use your findings for? Even if you perfected the sensors and have all this data, what will you use it for? Aside from giving visual, quantified feedback on "how fucked we really are", I don't see where this is going.

Let me tell you a little story.

Once upon a time there was this retired IT/Software developer that liked to paint (pictures) and he decided to take an online drawing course; 7 lessons, each comprising three parts.  He failed to complete the first third of the first lesson because of tremors in his hand/forearm. 

He was super pissed off and after a while he went in search of a solution. Long story short: he "found" the Cala Trio but it cost $3200 + $156/month which was way beyond his budget and it doesn’t work for everyone.  Expensive but not technically challenging.  Also he found other "interesting" possible approaches to the treatment of Essential Tremors through electrical stimulation.

With the assistance of two fellow techies he finally settled on trying to do what Cala Health had done but with Commercial Off The Shelf technology. It wouldn't be pretty to look at but it should work and if it did it would only cost a small fraction of the Trio.  But how do you know if it is working?  You have to measure the tremor before and after. 

...and there you have it.  I need to be able to accurately, impartially, and consistently measure my tremors if I want to experiment with electrical simulation as a partial solution to my Essential Tremors.

AMA: Ask Me Anything

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)

Frequency analysis of a forearm/hand Essential Tremor

 Here is what my arm tremor looks like with a bit of frequency analysis applied to the raw data.

You can see that the data clusters around 5hz. There are a few data points in the 4.6 to 4.9 range and a larger spread on the upside from 5.1 up to 6.2 with a few scatter points all the way up to 7.0 hz.

I’ve not been privileged to see frequency plots of other people with Essential Tremor.  The few other charts I have seen show a similar profile.  

This particular chart was created with Google sheets.  Google is responsible for the somewhat odd numbering of the X-axis of this chart.  In an attempt to overcome this auto-numbering “feature” the data was reduced to a single decimal point but the chart failed to acknowledge this fact.

The data was captured this afternoon, Sept. 18, 2021 using the latest version of SensorGlove.ino.  The sample rate was 250hz and about 40 seconds of data was captured on an SD card.  I held my left arm in the “Wing Beating” position while recording this data set.

The data capture equipment consists of an Arduino Mega 2560, a Seeed SD card, and an Adafruit LSM6DS33 + LIS3MDL - 9 DoF IMU with Accelerometer/Gyroscope/Magnetometer. The IMU is mounted on a Velcro strip which positions it on the back of the hand.  The ‘X’ axis is aligned parallel to the wrist joint.  The ‘Y’ access is pointed in the direction of the fingers, and the ‘Z’ axis is normal to the hand.  The IMU, wrist band, and the electrical lead to the sensor have a combined weight of 0.8 oz.  As such they do not interfere with the free movement of the forearm/hand.

The raw data was post-processed into a CSV format file.  A low pass filter was then used on the raw data to remove most of the high frequency noise.  The tremor frequency was calculated by determining the distance between every second zero-line crossing point. With a sample rate of 250hz the average error rate should be 2% or less.  A plot of the data confirms that assumption.  What was surprising was the spread of the frequencies particularly on the upside of the 5hz peak. 

All this suggests that further work is needed in the frequency analysis for use as an input to a tremor stimulus device.  The measurement and analysis of tremors needs to be expanded beyond postural tremors.  The next prototype of the sensor glove should provide the ability to measure tremors across the 7 degrees of freedom of the arm.  Once we have the ability to measure and quantify this, the  Sensor Glove can be expanded to include thumb and finger tremors.

All fun and games for the Citizen Scientist. AMA

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)