Blog 3) My story – Orthostatic Tremor

(Orthostatic Tremor is a rare neurological disorder of the cerebellum, causing the inability to stand without leg tremors, feelings of instability, and imbalance with gait freezing, tremors cease when walking, sitting, or laying down.)

Mission statement;

“Leaning toward the relevancy of articulate details in each Individual’s experience preceding into Orthostatic Tremor, and relevant symptomatic details of endurance lending support towards further research and awareness to health care facilities and medical communities of un-awareness”

First, by way of a personal introduction;

For those reading this who do not live in my circle of life;
I am a 65-year-old female (born in 1955), very blessed in a marriage of 42 years (1979), and I have 2 daughters who are blessed in marriage and have gifted us with 8 GRANDS. I am a pastor’s wife of the same church for 30 years (1991).
My husband and I have been cross-country motorcyclists for the past 15 years, sharing our empty nest adventures. I have ridden all my life (since the age of 9 years old and got my street motorcycle license when I was 14). Although, I did not ride in my very blessed mothering years. Riding has been my, therapy, escape, freedom, adventure, and pleasure all my life and into my cross-country journeys with my beloved buddy/love.
I started this blog site to log our journeys. My husband and I usually put 2500-3000 on our shorter cross country adventures and 5000 – 6000 miles on longer journeys. And also we have the pleasure of riding together throughout our beautiful Ozarks. Motorcycling is something I do not want an Orthostatic Tremor diagnosis to take from me. I am hoping the leg to leg resetting will help when stopping in traffic, or use my kickstand when stopped in standing still traffic. I will find a way. And if I don’t – it’s all good.

Orthostatic Tremor is a rare movement disorder characterized by a rapid tremor in the legs that occurs when standing. The tremor disappears partially or completely when an affected person is walking or sitting. Individuals with Orthostatic Tremor experience feelings of unsteadiness or imbalance.

Walking slowly in a small area or stalling within a shopping scenario is difficult. Standing in a line waiting, and standing conversations cause us to become anxious. Shifting our weight back and forth or stepping leg to leg helps push the tremor into control, as this action resets the leg tremors. Deep breathing helps with the anxieties in a public setting of standing in lines or a slow shopping pace, although after around 10-15 minutes, we simply have to sit down. Pushing past tolerance levels causes major fatigue and discomfort. Many with OT have much less tolerance in all the above described, using assistance devices; canes, walkers with a seat, rolling kitchen stool, and wheelchairs. We are all at various progressive levels. Explaining all this is not a possibility for people around us to understand.

Many chronic illnesses and disabilities are invisible to those around us.

From my own experience, I know that there is much to learn from patients themselves. Tests can verify and bring conclusions, but patients and their story of experiences, in chronological order leading up to OT hold pieces to this puzzling rare disorder. Physicians and researchers who understand this are advocates for our cause and interested in the details of each Orthostatic Tremor patient, I would assume.
I would hope.

I have sensed a bit of stigma in OT research, as an outsider and patient, I have seen a lack of acknowledgment within renowned health facilities even though it is easy to diagnose with a stethoscope and even more profoundly with standing EMG testing. My guess is, this happens because of the minimal treatment options in medication and also the DBS procedure having minimal success. There are no answers to the cause, there is no cure or solid classifications as of yet, and of course, because it is profoundly rare.

Orthostatic Tremor affects mobility and is progressive. This should bring about much concern as it not only affects the elderly, such as myself but many younger people, also.
Research must continue.

My Orthostatic Tremor journey.
I have debated telling the long story of it or the short condensed, which may be more compelling for a reader to invest time in. I have been stalled out on this internal debate for a few weeks. I know it will be hard to invest your time in the long story, though I lean toward the relevancy of articulate detail having important factors in research. We all know when we visit a specialist or any physician, they all have minimal time for the details. I believe that is a factor regarding to Orthostatic Tremor being suppressed from an expedient diagnosis, along with the fact that the majority of our care providers in our health fields…..have NEVER heard of OT. My major goal is to change that FACT into an acute AWARENESS

So here we go with the long details of it.

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

On multiple occasions even as far back as five years ago, I would be with my husband in a hospital room visiting with families from our church, standing still for a while, I would begin to feel weak with slight nausea. Breaking a bit of a sweat, needing to sit, or just melt to the floor. I was embarrassed and also trying to stay focused on the discussion and engaged socially. 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 autoimmune fatigue.
In more recent years, when showering for over 15 minutes or so, especially in the mornings, I would become so weak a couple of times I curled up in the bottom of the shower. Even though we have a built-in seat, I felt too 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 a while 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 10-15 minutes, rest, and then finish.
I would help my husband (Pastor) cook his famous breakfast at church on Wednesday evenings and helped serve. My husband who knew how weak I felt would offer for me to sit on a stool to help serve. But I refused, too embarrassed of my weaknesses. I would go home feeling overwhelmed with exhaustion. Disappointed in myself, failing at having the energy I needed to serve with my husband.
Standing while doing a mammogram, I would feel sick and clammy, I ask to sit down a few minutes during it. Taking a rest helped.
When shopping, walking slow, after around 30 minutes I was exhausted, with a necessity to sit down.

All those details of intolerances and weakness for standing were progressing. My limitations in the years before February 2021, I believe are relevant symptoms leading up to the standing leg tremors and my Orthostatic Tremor diagnosis, a rare neurological disorder.

Also, in the past 2-3 years, while I was having standing intolerances, every so often, in the evenings my spine would begin to feel hot; like it was on fire with a burning sensation. In the 3-4 months leading up to my February 4th, 2021 crisis, it was every evening. I used ice packs on my back to help it feel better. This burning made me feel ill with nausea, from late evening occurrences moving up into earlier evening occurrences of 6:30 pm to 10 or 11 pm and later into my nights, disturbing sleep. It was not something that bothered me throughout the day at all, just in the evenings. Those advancements led me into making an appointment with my rheumatologist because it had begun to feel intolerable. That appointment was on the 5th of February 2021.

Both of those symptoms seemed to move along together and were progressing. I had been ignoring them both and just trying to cope. I had fears in stating my symptoms to my physicians, that it may all be thought of as anxiety much like years earlier (2011) before I was diagnosed with Hashimoto’s autoimmune. I was placed on anti-depressants that did not help me. My autoimmune test for thyroid (by the time I was tested) would indicate me being 5 times off the charts. When I ask the Endocrinologist, “Is my thyroid working?” He said, “Your thyroid is dead.” That was my major lesson in advocating. A malfunctioning thyroid can be like a crazy roller coaster ride. When I was placed on thyroid replacement medication I began to feel normal, mentally and physically. Most doctors know the effects of a non functioning thyroid. Because of that experience, I am very apprehensive of having anxiety pinned to my medical record when there is a real physical condition to conclude. I was very much aware of the balance in communication to my physicians….as in, well you know – I am not a crazy person, just a desperate person. When physicians don’t know what’s going on, advocating to make sure we are not pushed aside is essential.

So….this is my February through May 2021 pivot into an Orthostatic Tremor diagnosis beginning;

Thursday, February 4th
While standing too long in my kitchen doing dinner prep I became weak shaky and clammy. I felt determined to continue, feeling angry, frustrated, and sad at my weaknesses, I thought – 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 while watching TV I felt a strange feeling. Lightheaded, 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. A BP spike like this was something new that we were not familiar with. 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 nearby town, about 12 miles away, where the hospital was. We live in a smaller town near the bustling NW Arkansas. I felt like it was increasing still, with a feeling like I could pass out. We called an ambulance. It was then 207/110 and by the time we arrived at the hospital, 173/124. They did a few tests, gave me medication to bring it down and we went home.

(I believe, looking back, knowing more surrounding factors of my Orthostatic Tremor diagnosis, that pushing through earlier that evening, while standing to do kitchen prep caused my body unusual stress, along with the intense spinal pain being a contributing factor. Knowing more about OT, holding balance throughout the day my back is under the stress with balancing against standing leg tremors, maybe causing fatigue with fighting all day for balance. I have observed within the Orthostatic Tremor support groups that there are many others with back issues)
I don’t believe it was something understandable medically in the ER on that evening.

Friday, February 5th
I already had an appointment with my Rheumatologist. He ordered the appropriate tests since the spinal pain and using an ice pack every evening just did not seem normal.

Monday, February 8th
I had a follow-up appointment with my PCP in regards to the BP spike and ER visit.
I expressed to him my inability to stand for over 15 minutes and my back feeling like it’s on fire every evening around 6:30 pm. I felt the two problems were connected. He gave me an RX in case my BP spikes again.

Tuesday, February 9th
I woke up in the morning when rolling over my whole body began to tremor and shudder. It felt like it generated from my spine and I broke into a sweat. I had never experienced anything like it. It lasted about 5-6 seconds. We felt it wasn’t something to ignore. 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, the first of 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 a 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. I was thinking (not out loud) – ARE YOU A DOCTOR!? I do not intend to marginalize any doctors or use names on these plubications, but it is essential to stress the use of common sense in our health care choices.
In a bit of rebellion, I quit taking both doses of propranalol and the results in the few days ahead proved to be very shaky. A few months later the Movement Disorder Neurologist at Mayo Clinic informed us propranalol, is used by some surgeons for steady hands. Military snipers use it and it is illegal for use in competitive archery and billiards too. I had begun taking it when I was a dental assistant on days that I worked, as my hand tremors advanced with my age. This was under the care of my PCP. A migraine specialist increased my dosage to twice daily of 10mg Propranolol (Orthostatic Tremor and Essential hand tremor are different as various clinical research have concluded)

I would guess that the fact that I had been on propranalol and Gabapentin, both may have lent a measurable amount of support to the impeding Orthostatic Tremor. Both medications have a history with OT and are on the list for treatment. Neither showed evidence in solving my Orthostatic Tremor as it persisted. Though, perhaps without those medications, I may have presented with leg tremors much worse or maybe sooner without them.

Wednesday, February 10th
I had leg tremors within standing 1-2 minutes. This had progressed over the previous week, following the spiked BP incident caused by pushing past my standing tolerance and the continued burning spinal pain of the evenings.

February 9-17th
Frequently, as I rolled over in the night, I woke with shuddering from spinal tremors. I went to bed every night with an ice pack on my burning spine. I was having hands spasms when I woke to reach for my bedside water. They only lasted a few seconds. Mostly, my right hand, but also my left. Just briefly and then they would stop.

(I often wonder if the evening burning pain was spinal inflammation causing the spinal tremors and shuddering throughout my body in my movements during my sleeping hours. I also wonder if OT affects our spines more than research has revealed. A night’s rest always brought recovery, except with the standing leg tremors. Orthostatic Tremor, being rare, has minimal research, so I continue to stress the importance of details).

Thursday, February 18th
I had labs tests and MRI (cervical, thoracic and lumbar) I wasn’t able to stand up long enough to register for the appointments. Thankfully, my husband was valuable support, while we are both mystified and overwhelmed.

Sunday, February 21st
I applied to the Mayo Clinic online and had a phone interview the following Thursday. I was beginning to realize my physicians were all mystified. (As it turns out, it takes a strategic sequence of hurdles to get excepted into Mayo.)

Monday, February 22nd.
I woke at 1:30 am with a right leg episode in the night, like an electrical current, (right leg seems to tremor more than left and this was also held evident in my Mayo EMG) I woke from a sound sleep with spinal/tremors, my right leg felt like a jolt shot down my leg and into my foot with an ache and some brief numbness.
At 1 pm I met with my Endocrinologist for a routine Hashimoto’s (autoimmune thyroid) check-up. I consulted with him on current tremor issues. I showed him how long I stand stationary before leg tremors begin. (about 1-2 minutes) My endocrinologist is one I value because of his deeper medical knowledge. He examined my tremors, legs, and hands, and advised me that I needed a Movement Disorder Neurologist. I told him I was pursuing admittance to Mayo Clinic of Rochester, MN. He advocated on the pursuing of Mayo for expediency as he concurred the neurological wait in our area was too long. He recommended the only Movement Disorder Neurologist in our area and sent a referral on my behalf. I was denied, as he was not taking new patients.

Tuesday, February 23rd
At an appointment with my PCP, I expressed my need for direction to a movement disorder Neurologist with referrals as advised by my Endocrinologist. My tremors off propranalol made this issue very apparent as I exhibited standing tremors and hand tremors. All testing so far revealed no help towards a diagnosis and direction.
My PCP advised returning to propranalol 10mg twice daily.

I began to explore, google and research for myself.

Thursday, February 25th
I had my Mayo phone interview and filled out a neurological questionnaire. (The Mayo neurological evaluation form I filled out, may not be fitting regarding Orthostatic Tremor)
The status continues in all physical areas.

My Insurance case manager expedited a pre-authorization if I was to be excepted into Mayo Clinic care.

Wednesday, March 10th
I had an appointment with PCP. He ordered some labs and stated it looked like my Rheumatologist covered everything thoroughly.
I ask him if he had ever heard of Orthostatic Tremor. He said, “no”.
I told him to look it up. 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. (Since I noted it’s a rarity, I thought, surely it was not that)

I collected every article of research on OT and began logging into all the support groups of Orthostatic Tremor all causing me to realize I was at a dead end within my local options for medical direction. Very few regular neurologist have knowledge of OT and movement disorders neurologists themselves, have limited research resources to pull from with minimal treatment options. I did not expand on all this to my PCP. But I did inform my PCP that day I was not going to stay here in my area and go door to door, appointment to appointment, test to test, 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 on Orthostatic Tremor. And told him I wanted a referral to this movement disorder Neurologist at Mayo.

I had moved from the couch back to bed, (my husband had followed me bed to couch and couch to bed). I had liked the couch because back-pressure gives me a bit of relief. I would press a cylinder memory foam pillow down my spine. My back continued with burning sensations every day. It was always worse in the evenings. I continued to use a towel-wrapped ice pack to distract from the intense burning sensation (below shoulder blade level to waistline). My BP spiked with the pain occasionally. I continued to wake up, as I would roll over or reposition in my sleep, to all-over body spinal tremors/shuddering. Standing leg tremors continued.

Within my research on Orthostatic Tremor, I was making some mental adjustments, slowly realizing I need to process some grief in the changes this could mean to me personally. There were days that my husband would come home to me mourning in my uncertainty. I didn’t want to lose my normal physicality. I didn’t want to be a burden on him or anyone, in the progression of OT. I was fighting insurance dead ends, doctors with dead ends, and Mayo admittance failure. I had no direction. With the length of time in those months of feeling helpless, uncertain, and ill, my mental state was beginning to fall. Expressing the details of despair revolving around this OT battle is as important as medical details for understanding. We are human and our emotions come with us. I am not complaining, I am simply verbalizing realities for anyone who processes through any dark tunnel of despair. Even in my deep faith, I can lament just as David did in the Psalms, in the very heart of the Bible, well placed in the center. We cry out. So, I include this for the understanding of our physicians, specialist, researchers, and anyone who needs to know the depression aspects are included in this writing.

I had been feeling weak in waiting for each new test appointment, results, and subsequent cycling of each appointment.
I was weak with each appointment, it depleted me just to get in the building and while standing to check in my legs began to shake.
Thinking my way through repeating everything over and over was overwhelming. The push for medical help was draining my body. I had lost 10lbs since it all began. I had days that I charge on at the gates toward help. And other days I had not one ounce of energy.

As I meditate on this journaling of my medical crisis, I can not help but think about people/patients who wouldn’t be able to mentally process this medical WEB. Those who do not know how to advocate and those who do not have a husband or loved one for support. That is heartbreaking to me. People who deal with much more than OT.
We need to be heard….our stories matter.

Tips and advice I pass on to you

  • 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. A good insurance case manager is also an advocate when she understands the cause. She was my angel from God.
  • Letters of Referral to get to an expedient diagnosis need to be sent to the referred doctor and your Insurance company. Timing is essential.
  • There were failures in the sending/faxing process. When that happened, I got advised to obtain the referral letters from my PCP personally and Fax them myself.
  • The system fails us. It just does. Advocate calmly and relentlessly.
  • I called Mayo Neurology Department in the afternoon after faxing them in the morning.
  • I sent my PCP referral to the Mayo Neurology Clinic of Rochester, MN., and also a letter to that particular Movement Disorder Neurologist of the most recent OT research, 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. 😊

I was relentless in my pursuit of advocating. I got an appointment in mid-April for all the rule-out testing and the standard standing EMG that verifies Orthostatic Tremor. I returned for the concluding diagnosis with the Movement Disorder Neurologist who confirmed OT in mid-May.
I was diagnosed with Orthostatic Tremor. Nobody wants this diagnosis but it gives me a direction. It gives me an explanation for understanding. For me and those in my surroundings of life.

I am fueled for a fight of AWARENESS, in support for my fellow OTer’s, who suffer in very intense ways. The young ones with Orthostatic Tremor, who will have a very long battle.

Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.

To share this blog simply touch the FB share button at the bottom. Or hold down on the icon button below and chose to copy.

Blog 3)

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calender, you can navigate from blog to blog.

Kim of:

Blog Series for Orthostatic Tremor Awareness

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

Use the share button.

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happytrails2U blog

Sharing my journeys and observations of life. I am Kim Fowler in the Arkansas hills, wife of a pastor, mother of two daughters, two son-in-laws and MeMaw to 8 GRANDS. Married to my beloved buddy/love for 42 years (1979) I have life journeys to share, a busy mind of thoughts and meditations in Christ my Lord. I began this blog to log our cross country motorcycle journeys.

10 thoughts on “Blog 3) My story – Orthostatic Tremor”

  1. I feel you and I’m so grateful to you for your words.
    I’m on the process of accepting this situation and it is not that easy. Well, step by step…
    Thanks to you I got the strength to send a message to my former neurologist to let her know about OT so other patients don’t have to wait for nearly a decade, as I had to, to get diagnosed.
    Many thanks and the warmest hug.


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