Albuterol and Essential Tremors

I just had a complete Pulmonary Function Test (PFT).  The final part of the test started with four doses of Albuterol!  Yes, 4 doses!  Exhale, nurse dispenses, inhale, hold for 10 seconds.  Repeat 3 more times.

Then you have to wait for 10 minutes before the final test.  It’s all to see if bronco-dilators affect your lung capacity.

This is not my first experience with Albuterol. I’ve got a persistent dry cough which I’ve had for years.  Nothing cures it.  Some treatments make it  go away for a while.  Spring and sunshine helps sometimes.  Been prescribed Albuterol twice now.  Usually doesn’t do anything for the caught and usually doesn’t affect my mild Essential Tremors.

But this time it was different.  I felt a bit light headed as I left the medical centre.  I was OK to drive but by  the time I got home I had bad tremors. Worse than any I have experienced.  I had to use two hands to hold a small bowl of fruit while I ate.

I had visible tremors in my right hand, my non-dominant hand.  Usually, my tremors are only visible in my left hand.  My fingers in the right hand have started to develop some slight tremors over the past couple of years, but this was different.

My left arm tremors are Pronation/Supination tremors.  Known frequency of 5.2Hz with an amplitude of 2-3 centimetres.  Something like 2-3 on the TETRAS scale. Mild to moderate.

Today, the tremors in my right hand were just about as bad as what I normally experience in my left hand.

After two and a half hours, my tremors appear to be returning to my “normal” state.

A quick search of Pubmed, the National Library of Medicine shows a 1986 study shows Albuterol exacerbates Essential Tremors by as much as 50%. 

Caveat Emptor!  Another drug to be avoided or used sparingly with pre-knowledge that it may make one tremors worse.

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.)

An Essential Tremors Moonshot?

 After a few weeks, our small Essential Tremor working group settled on the first two projects we would work on. We first identified the need to be able to accurately measure tremors before we started to explore any treatment options. The online scientific literature available to us seemed to indicate some shortcomings in the area of measurement of Essential Tremors.

There is a well established consensus that about 90% of people with ETs experience tremors in the hands and arms. Astonishingly, we could only find one paper that accurately measured tremors in all 7 DOF (degrees of freedom) of the shoulder-elbow-wrist. Most studies that measure tremors are limited to 1 or 2 measurements.  Additionally almost all of these studies are limited to measuring positional tremors.

Now I don’t know about you, but I am not particularly concerned that if I hold my left arm in the “wing-beating” position, I can trigger a Pronation-Supination tremor in my forearm.  What bothers me is putting toothpaste on the tooth brush. An Action Tremor.  Or eating soup with a spoon which I now find impossible.

Action Tremors or Kinetic Tremors that affect the Activities of Daily Living (ADL) are the tremors that we should care about the most.  In approximately 95% of cases these kinetic tremors are more severe than positional tremors.

Why then do most ET studies measure Positional Tremors?  Why?  Because it is easier to measure Positional Tremor.  That is not entirely correct!  It is much more difficult to measure Kinetic Tremors.  We need a moon shot on measurement of Kinetic Essential Tremors.

So far we have one accelerometer/gyro combination sensor integrated into a data logging software package that records to an SD card.  This first test rig was built using Commercial Off The Shelf (COTS) hardware, two Open Source Software packages and a tiny amount of custom written software. Our first test was to record about 35 seconds of my Pronation-Supination forearm Essential Tremor.  The data was processed by Google Sheets to  produce the following chart.

The sensor was mounted on the back of my hand with a Velcro strip holding it in place.

The Blue x-axis is parallel to my fingers when they are extended straight out.

The Red y-axis is in the plane of the hand and parallel to the wrist joint

The Yellow z-axis is vertical to the hand.

In other news, the global chip shortage is real!  We have been waiting for several weeks to purchase some additional sensors.  Twice they came into stock but were sold out before we could place an order.  We now have secured an order of these sensors and will start to build our next prototype SensorGlove in the next week or so.

Let’s hope this doesn’t take a decade like it did to reach the moon.

(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.)

Essential Tremors and a visit to to the Dentist

 First, let me say this was not your normal dentist visit.  It was not ‘a clean and polish’ visit.  It was major oral surgery: two implants and a gum graft.  More than 5 hours in the chair! Oh, he kept me well numbed so not much pain involved but there was a fair amount of stress in the procedure.

I had promised Jill I would keep her informed about progress.  When I had a chance, I reached for my mobile: MIA!   We were waiting for the aesthetic to kick in so I asked for a couple of minutes and grabbed my laptop.  I could not type a short email.  My tremors were so bad I had to one finger, “hunt and peck” to get her a message. Even then it was garbled.

From a previous visit, I knew that the local anesthetic contained Epinephrine.  A little pain getting the injection + a little stress + Epinephrine == really bad tremors for me.  You can request a local anesthetic without Epinephrine.  I was informed that it takes longer to become effective and it doesn’t last as long. IIRC with the old teeth anesthetic you had to wait for 15 minutes or more before the dentist could start working and it took what seemed to be forever to lose its effectiveness. Something like a  half a day with a numbed mouth.

Opinion: The addition of Epinephrine to the local dental anesthetic is a money/time saving strategy without tangible benefits to the patient. I could be wrong. Perhaps I am.

Using a TENS on my Essential Tremors

 Jill is selling her condo and on Tuesday the purchaser did an inspection of the property.  There were a  couple of minor “gotchas” that needed to be addressed so a visit to Home Depot was called for. Because it can sometimes be a nightmare trying to locate a specialist item, I came prepared with the item pulled up on my laptop.  I asked the checkout clerk on the “Pro” desk where it was and received directions to the correct aisle.

The same young lady was there on the way out but the item wouldn’t scan.  I said they needed better scanners and mentioned at one time I wrote software for Point of Sale.  She mentioned she was studying computing a Predue and was hoping to work in BioMedical.

That prompted me to describe my latest computing project. Using an Arduino microcontroller, a couple of solid state switches, a miniature accelerometer and a COTS TENS unit.

There are several scientific papers describing the stimulation of peripheral nerves with an electric current that can be beneficial to a proportion of the Essential Tremor population.  cite cite cite As with almost all treatments of Essential Tremors, it only works for some of us but it works well enough to interest me in a test drive.  Unfortunately the cost of an FDA approved nerve stimulation unit is well outside my budget even if I excluded the ongoing monthly charges.

Our Essential Tremors working group had a lively discussion over the possibility of using cheap, Commercial Off The Shelf (COTS) hardware for the benefit of Essential Tremors.  The idea of a peripheral nerve stimulation unit evolved from these discussions.  A TENS unit looked to be a good  source for the electrical current. Relatively inexpensive, with controls for frequency, duration, and strength and even better, portable battery powered units are available.

At first I thought I would need to build some special hardware to switch the output of the TENS unit between the Median and Radial nerves.  Mechanical relays would be too slow as we needed to switch the output between the nerves at or near the frequency of a person's tremors; about 5-12 hz. I sourced a pair of solid state switches for the Arduino microcontroller from Hong Kong.  They will arrive someday. ;-)  There is an overwhelming selection of inexpensive accelerometers available.  I may need to try a couple before  we settle on one suitable for measuring hand tremor frequency.  The cost of materials so far will be about $50 USD + the TENS unit and my time to write some control software and integrate the whole.

Stay tuned for future developments.

The dual solid state switches arrived yesterday and here is a photograph of my working prototype.  Next up is the accelerometer to measure my tremor frequency.

(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.)