Gee whiz when I began to realize the rarity and lack of clinical awareness,
I started loading every research article I could find, along with every OT support site and then began studying the people on the sites, their history, and stories.
While my physician said –
“Nope never heard of it.”
Why have I contributed so much effort to OT awareness?
Why have I invested so much time and energy towards OT awareness?
Why have I blogged so relentlessly with a whole series toward ORTHOSTATIC TREMOR AWARENESS?
Regardless of September being Orthostatic Tremor Awareness month…..
When I read the quotes regarding its rarity from leading researchers, I simply feel challenged. If I were to be analyzed with the “fight or flight” theory, presently – I am in fight mode. I feel like “unawareness” and “unknown” are walls to be kicked down.
Read the following quotes within the research articles.
“Orthostatic tremor (OT) remains among the most intriguing and poorly understood of movement disorders. “
“Owing to its rarity, the current understanding of OT is limited and is mostly based on small case series or case reports.”
“Scientific understanding of OT is in its infancy.”
“OT is not widely recognized by physicians who are not movement disorders experts, which often results in misdiagnosis for the unfortunate patients, who then may be subjected to inappropriate or unnecessary tests and treatment.”
“Primary orthostatic tremor is a rare disorder that is still under-diagnosed or misdiagnosed”
“We review the clinical signs of POT that may help to increase the awareness of doctors and improve the diagnosis accuracy”
“Nevertheless, this condition is relatively easy to diagnose when you listen carefully to your patients, as they often report the main clinical features: lower body tremor activated upon standing (with feelings of unsteadiness and decreased time immobile in the upright position) which is improved by walking and absent when sitting or lying down”
“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public.”
In collecting articles and research studies, I discovered most of them to be outdated. Many are articles of opinions of research studies. There are articles of updates and republishing. Nothing new comparatively one to another. Cerebellum involvement studies. Classification opinions regarding hertz values. All very interesting articles and resources, just many are simply outdated.
Mayo Neurology research has delivered the most current conclusive research of 2019;
Clonazepam has been the first-line drug of treatment used for many years and seems to present good results for many and not so good for many. The downside; our body builds up a resistance maybe as OT progresses. Many patients seem to have an intolerance to the side effects. The Mayo Movement Disorder Neurologist was careful to tell me that treatment is very limited, with sometimes minimal results.
It seems most patients who have had OT a long time, chose to not take medication, due to side effects, mainly drowsy with slower thought processing. We are all different. Gabapentin along with the Clonazepam seems to be a combo with many OT patients. Primodine is the second line in treatment.
In more recent years there has been a push for DBS (Deep brain stimulation). I have observed on the support boards of those who have had DBS; it’s invasive, expensive, and insurance does not pay for it. I have heard of successes and also not-so-successful stories with DBS procedures. I would believe it probably is a last resort for the more severe cases and patients with medication-refractory OT (term used when they are not responsive to medication.) DBS is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders. Maybe future improvements will come with DBS and insurance will be forced to consider the quality of life improvement.
One of the newer technologies in process for treatment
https://institutducerveau-icm.org/en/actualite/a-new-non-invasive-therapy-for-the-treatment-of-primary-orthostatic-tremor-pot-trans-spinal-electrical-stimulation/ a quote from the above article.
“A study led by Jean-Charles Lamy, member of the Mov’it team and operational manager of PANAM the platform for the exploration of movement at Paris Brain Institute has just shown, thanks to research, that trans-spinal electrical stimulation improves both the time in a standing position and reduces the amplitude as well as the frequency of tremor. This study is published in the journal “Movement Disorders”.
Below Dr. Karen D. Sullivan’s Orthostatic Tremor videos, she is very informative and gifted in speaking directly to OT patients. She is a strong advocate for patients with Orthostatic Tremor. Below are her utube videos that have helped so many patients better understand OT. She is a doctor of Neuropsychology.
Orthostatic Webinar preview https://youtu.be/ea6yHr4ssPw
Orthostatic Tremor https://youtu.be/i58rPitK5uw
Orthostatic Tremor and Gait https://youtu.be/iU3dOqBkoHA
She is also on Facebook called, I CARE FOR YOUR BRAIN
Below is a fairly current (2019) research on DBS (from Mayo Clinical research)
I noticed one of the researchers, being Dr. Bryan Klassen, the Movement Disorder Neurologist who administered my EMG (electromyographic) analysis at Mayo. The classic test of determining and confirming OT.
Mayo is an impressive American medical legend, globally. Ken Burns produced a 2-hour video of its iconic history. It’s can be accessed on PBS.
As I realized Mayo of Rochester was my hope for processing expedient diagnostics, I ask to be referred to Dr. Anhar Hassan, who had been involved in the most recent advanced research study completed in 2019.
My original appointment was with her. I was so disappointed when on the day we drove into Rochester, MN., I got a call informing me; she had something come up and was unavailable. My husband comforted me in that they were getting me in with another neurologist who would examine me and begin the process of diagnostics. We processed through in 4 days last mid-April 2021 and returned the second week in May for results and a confirmed Orthostatic Tremor diagnosis.
I am presently on Clonazepam 0.5 twice daily along with Gabapentin 300mg 4 times daily. I can stand still for around 5 min or so, though I feel uneasy as I stand. If I shift side to side, I can last around 15 minutes and then I sit. Sometimes if I push my limit, I get a weak ill-feeling, break a sweat, and feel nauseous. The onset of leg tremors upon standing began for me in February 2021 with 1-2 minutes induced leg tremors, consistently. Towards evenings tremors were immediately and present with slow walking as I got to bed very early trying to put them to rest. I could feel them advance upward with evening fatigue and spinal back burning after a day’s fight to be normal. This was after many years of being unable to stand still for over 15-20 minutes, before having, an overwhelming need to sit down. (My story is in blog 3 of this Orthostatic Tremor awareness series)
This is an article By Diego Torres-Russotto, M.D., Neurologist – he leads out in the Orthostatic fight with a wealth of knowledge – he is our advocator.
There are also a series of uTube videos to be found of OT conferences he has been presented in. (Search them out on UTube)
With his opening quote-
“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public. But for the small number of adults who develop OT around midlife, it’s very real, very life-limiting, and very, very hard to explain to others.
Patients with OT can walk quite well at a brisk pace. But if they slow down or stand still they feel that their legs no longer hold them up! It has been compared to riding a bicycle: you’re fine when you’re riding along, wobbly when you slow down, and unable to stay upright when holding still.”
(The above word picture is true – you slow down on a bicycle and you fall over without propping.)
In this article, he mentions Gloria Nelson MacWright he quoted in tribute to her this, “After her diagnosis in 2000, Gloria Nelson MacWright created a website called http://www.orthostatictremor.org to see if there was anyone else out there. She began hearing from others worldwide, and now over 1,100 people have registered on the site to create the Orthostatic Tremor Community.”
Below is her site that she contributed for awareness and help.
I appreciate that she logged her journey for us in this article below;
And also join in with interactive support on Gloria’s resource of helpful support;
This U.K. National Tremor Foundation site is great to help to inform others with simple details;
If you go on Facebook and search; Orthostatic Tremor groups, you will find several that have very random postings, from the U.S and the U.K., I found support in them all helpful, although Australia has the most volume in traffic postings and people involved, I appreciate their support and the work they put into helping encourage and inform their members, Primary Orthostatic Tremor on Facebook.
OT Being a marginalized community within research, support groups are essential. We learn from one another.
Hopefully, research may learn from us with observations into our groups.
Research you are welcome, we invite you.
Go to the support groups and study patients with their experiences.
Observe the ages, there are many young patients with OT.
Observe that many of us who are older, tell of an inability to stand for very long when we were younger.
Observe that we have spinal issues, include that in your research.
KNOW that our medical communities do not know of or have ever heard of Orthostatic Tremor.
Being very thankful for research, I pray for clinical curiosity to be a driving force among the many researchers and physicians who do care about Orthostatic Tremor. Please help us in making Orthostatic Tremor KNOWN, so that diagnostics have a path to us.
Below is our National source for calculating rare diseases
2021 Orthostatic Tremor has been documented with 390 cases in our nationwide. (US)
Once again Mayo Clinic has completed the most current, conclusive article to date. It would be my go-to for valid information.
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Kim of: http://happytrails2u.blog
Blog Series for Orthostatic Tremor Awareness
9) Orthostatic Tremor Encouragements and strength in Faith.
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AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.
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