My Orthostatic Tremor Journey

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My story - Orthostatic Tremor

1st by way of a personal introduction;
My husband and I have been cross country motorcyclists for the past 15 years, sharing our empty nest adventure together. I have ridden all my life (9 years old - got my street motorcycle license when I was 14), I absolutely have to throw that information out there because, I am doing a silent eye roll inside my head when asked - you ride your own bike.
My husband and I usually put 2500-3000 on our shorter cross country adventures and 5000 - 6000 miles on longer journeys, besides riding around the in our Ozarks of great riding. I mention this because with my recent Orthostatic Tremor diagnosis, my intent is to not let it be an abstacle to my love for riding. I am hoping the leg to leg resetting will help when stopping in traffic, or use my kick stand when stopped in standing still traffic. I will find away.

On multiple occasions even as far back as five years ago...
standing still talking; I felt weak with an overwhelming feeling like I needed to sit down, nauseous and a sweat breakout, with a great need to sit down, feeling like just melting to the floor. I was embarrassed and also trying to stay focused into discussion and engaged. I left the room to find a seat on one occasion. Sitting revived me. I expressed this to my husband and just passed it off to very familiar auto immune fatigue.
In more recent years, when showering for over 15 minutes or so especially in the mornings, I would become so weak I a couple times I curled up in the bottom of the shower, even though we have built in seat, I felt to weak to sit.
I began to hurry my showers and also sit on the built in seat to keep away from the overwhelming feeling of exhaustion. I adjusted the temperature to be not so hot. I would rest for awhile after a shower. I brainstormed to try to figure it out.
After having cut my husband’s hair for 42 years, I had to sit down after about 15 minutes, rest and then finish. I felt weak. Thought I was totally out of shape. Felt I appeared lazy.
Standing while doing a mammogram, I felt sick clammy standing up through it, I had to ask sit down a few minutes. Taking a rest helped.
When shopping, walking slow, after around 30 minutes I was exhausted.
My husband was use to me sitting to rest a while.

Because I have experienced years of fatigue that comes with Sjogren’s much of what I experienced in the past few years, I rationalize to blame either my existing Hashimotos or Sjogren’s auto immune. Thinking maybe I needed to adjust thyroid medications or maybe it was a Sjogren’s flare.

This inability to stand for very long seemed to advance on me along with back spinal burning that only occurred occasionally in the evening; both issues seem to come along together more frequently. I used ice packs on the radiating back burning spine discomfort occurring every evening, worsening with nauseous fatigue, I believe both issues developed together leading into the Orthostatic Tremors. I believe my burning back comes with end of the day fatigue, possibly, how I uniquely hold my balance in resistance, always feeling much better in the mornings.

Has research come far enough to study what precedes Orthostatic Tremor? Do we all have diverse issues leading into this progressive neurological disorder.

Thursday February 4th 2021 while standing to long in my kitchen doing dinner prep; weak shaky, and clammy I felt determined to continue, feeling angry, frustrated and sad at my weaknesses and thinking I am not stopping till I’m through.
Later that evening, sitting reclined beside my husband, relaxing, and trying to ignore my burning spine pain; watching TV, I felt a strange feeling, light headed, dizzy, blurred vision and a rushed feeling in my head. I leaned forward and told my husband - something is not right. We took my blood pressure. I am usually low to normal with my BP. It was 173/110. I had NEVER had high BP, I did not break into 3 digits until well into my 50s with some weight gain.
This was alarming to us, something new, we neither one were familiar with a BP spike as this was. We thought - do we call an ambulance. We took it again and it was 183/110. We loaded up in the car and was headed towards a near by town about 12 miles away to the hospital, we live in a smaller town near to the bustling NW Arkansas, I had a feeling of it increasing higher, feeling I could pass out. We called and ambulance, it was then 207/110
and 173/124 on our arrival to the hospital. They did a few test, gave me medication to bring it down and we went home.
I believe, looking back, with knowing more surrounding factors with my Orthostatic Tremor diagnosis, that pushing through earlier that evening while standing doing kitchen prep caused my body unusual stress, along with the spinal back burning pain causing a BP spike. I don’t believe it was something understandable medically in the ER on that evening. Everything checked out okay and we went on home.
The next day 2/5/21 - I already had an appointment with my Rheumatologist for the spinal burning pain and using ice pack every evening just did not seem normal.
He ordered all the appropriate test.
I had a follow appointment with my PCP in regards to the BP spike and ER visit.
I expressed to him my inability to stand over 15 minutes and my back feeling like it’s on fire every evening around 6:30pm. I felt the two problems were connected. He gave me an RX for in case my BP spikes again.
2/9/21, I woke up and rolled over my whole body began to tremor/shudder and I broke into a sweat. I had never ever experienced anything as such, it lasted about 5-6 seconds.
My husband called the ER and told them what I had experienced and they told him to bring me to the ER.
My legs were shaking as I got ready and I felt unsteady.
I would say this was the beginning, of knowing my leg tremors.
I have had essential hand tremors most of my life and I have been on medication since my early 50s to control them. (propranolol 10mg twice daily, I have also been on regime of Gabapentin 300mg three times daily for many years for my Sjogren’s and migraine support)
They did more testing and all was normal.
The ER doctor advised me to reduce my propranolol to once a day. Of which advice I was thinking (not out loud) - ARE YOU REALLY A DOCTOR !

I would guess that the fact that I had been on propanalol and Gabapentin, both may have lended a measurable amount of support to the impeding Orthostatic Tremor. And also looking back on these occurrences, I believe I overwhelmed my nervous system with the abnormal spiked BP, caused by me fighting long past my standing endurance. I also believe my burning back in the evening is the fatigue of fighting for balance - it just may be my individual reaction in my Orthostatic Tremor fight.

The intolerance of standing over 1-2 minutes producing leg tremors-feeling unstable consistently continued.

February 18th
Labs test and MRI (cervical, thoracic and lumbar) I can’t stand up long enough to register into these appointments, thankfull for my husband’s assistance in support, as we were both mystified and overwhelmed.

Appointment with PCP
Wednesday, March 10th
He ordered some labs. Stated it looked like my Rheumatologist covered everything throughly.
All testings revealed nothing.

My PCP was mystified, as I had exhibited my consistent standing leg tremors - onset 1-2 minutes as I stand. I told him they stop when I walk or sit.
I ask him if he had ever heard of Orthostatic Tremor.
He said - no.

At this point I had googled - leg tremors when standing, stopping when I walk, sit or lay down. No matter how many ways I re-formed the wording of that particular description on google…..Orthostatic Tremor was the ONLY thing to pop up.

I had collected every article and been logging into all the support groups of OT and with great certainty, I realized I was on my own little medical island that my local physicians had no answers. I had concluded in all my research, that no PCP would have any knowledge of OT, very few regular neurologist have knowledge of it and movement disorders neurologist themselves, have minimal resources to pull from, with this very rare neurological disorder, treatment is also very limited.
I did not expand on all this to my PCP.

But I did informed my PCP that day - I am not going to stay here in my area and go from door to door, appointment to appointment, test to testing and more testing for the next few years with what I am dealing with.
I watched his overwhelmed face at my desperation for answers and told him it was expedient that he give me a referral, I handed him the name of Dr. Anhar Hassan, who had completed the most recent research of Orthostatic Tremor, I want a referral to this movement disorder Neurologist at Mayo.

I learned the word expedite as an insurance passage to pre-authorization and appeal, re-appeal and when all else fails do a fast appeal. I was pursuing, “out of network,” medical care.

There were failures in the sending/faxing process; when that happened I got advisement to - obtain the referral letters from my PCP personally and Fax them myself.
The systems fail us. They just do. Advocate calmly and relentlessly. Not saying there were no tears in these failures.
I called Mayo Neurology Department in the afternoon after faxing them in the AM; my PCP referral and my own letter too, I wrote that particular neurologist a brief account of my tremors on standing, but not walking or sitting, I FAXED it personally to her. And then at the end of that day I called the neurology department to make sure she got my FAXed letter......and I got my appointment.
They processed all my rule out tests and the classic standing EMG test mid April, I went back
early May to the movement Disorder Neurologist, receiving my diagnosis of Orthostatic Tremor diagnosis.

Kim of
https://happytrails2u.blog/2021/08/20/orthostatic-tremor-awareness/

I am just beginning a blog of 9 series in honor of Orthostatic awareness month of September.