Shaking the Silence: My Intense Journey with Head Tremors

Head Tremors2

Have you ever experienced uncontrollable head tremors? The kind that shakes your world and leaves you wondering if this will ever end.

I’m almost positive this is not an issue or thought, for most people reading this. And Head Tremors might not even be an issue for most in our Ataxia community. But for me, this is one of the worst parts of my condition.

Head Tremors: Understanding the Condition

Head tremors are characterized by rhythmic shaking or oscillations of the head. While they can occur independently, they are often associated with underlying conditions, including ataxia. Head tremors can be classified into different types, including essential tremors, dystonic tremors, and Parkinsonian tremors.

Causes of Head Tremors

1. Essential Tremor: Essential tremor is the most common cause of head tremors. It is a neurological disorder characterized by involuntary, rhythmic movements, often affecting the hands, head, and voice.

2. Dystonic Tremor: Dystonic tremor occurs due to involuntary muscle contractions and is commonly associated with dystonia, a movement disorder.

3. Parkinson’s Disease: Parkinson’s disease can cause head tremors, often accompanied by other motor symptoms like rigidity and bradykinesia.

My story with tremors starts in 2011. 

I was working in New Mexico as the retirement representative for one of the larger hospital systems. One of my responsibilities was to travel to the regional clinics and meet with the staff. On this trip, I was traveling to Ruidoso, which is around 3 hours from Albuquerque. 

Never will I forget that feeling when I arrived and stopped to eat. I had this uneasy feeling inside of my body and my head was slightly twitching. Assuming I was just tired, I finished and drove to the hotel. But the rest of the night, I could not shake that feeling.

The next morning, I went to the clinic to start my day of appointments. But just as my first person walked in, those shaky feelings started again. Since I cannot see myself as I am talking, I am just hoping and praying that they are not too obvious. 

A thousand questions and thoughts run endlessly through my mind as this is happening. Questions such as “What if this never ends” and thoughts like “I am not prepared for this in my life.” Little did I know what was about to happen going forward. 

1 month on and 2 months off

That was my pattern. Almost to the day, my tremors would be present for a month and then be gone for 2 months. And one of those weeks, during that month, is so extreme that I cannot safely drive. Isn’t that time structure unusual? 

Even though I had tremors, my life did not stop. I still had to work and participate in all the parts of daily living. Imagine trying to have meetings with people about their retirement and investments with your head twitching in a “no-no” motion. And at times, it is so bad that I cannot focus on the people in front of me. 

Many medical professionals worked with me during this time to try and control this issue. I had medications and most of those made me sick to my stomach. We tried Botox injections to my neck and upper back but still no luck. Nothing would break this pattern.

It amazes me that I continued to try and live a normal life while these movements were happening. I gave a Toastmaster’s speech, gave work presentations, went shopping, and even a couple of dates, while this was happening. Wow, I am sweating right now just thinking about it!

May 2021

This was the last time I had a tremor or that specific unsteady feeling. It was the middle to the end of May 2021 and my latest round of tremors was ending. I had no idea that this time was different. 

As the months progressed, I was showing no signs of the tremors returning. I remember keeping a mental record. At first, I made it 3 months, and then 6, 9, 12, etc. Suddenly it was May 2023 and I had made it TWO full years, and still no signs of a tremor. That was until right now.

That familiar feeling

Everything seems to have hit me all at once. A couple of weeks ago, I took a very hard fall and thought I broke my hand. But, as I think about it now, was my nervous system building up before the fall? Did that cause me to lose balance? I just do not know.

The next day, I was talking to my dad and told him about that feeling in the pit of my stomach. I didn’t explain it earlier, but a few days before my tremors started, I got that feeling. It can only be described as a tight, very tight, ball of energy. That ball starts in my stomach and grows as it spreads up my chest. When it expands enough and I am feeling completely unsteady inside, that is when the tremors start. Usually starting slow and somewhat mild; and progressing from there.

Once they start, they must run their course. And when it gets to the point where I cannot even focus on what is in front of me, I know I am in the worst of it, and they will hopefully start to go down. But right now, as always, I feel like they are never going away! Let me describe what happens at the most extreme point.

Driving

Last Sunday morning I decided I should get some groceries in case I couldn’t drive for a few days. My tremors had started the week prior, and I wanted to be prepared. I had no idea what was about to happen.

I order everything online so that I only have to pick it up and not struggle to get around in the store. The store is only about 10 minutes away and I assumed I would be fine. I was not!

Driving in the middle lane, I was maybe 2 blocks away. My head started to tremble, but it was mild at that point. I opened the window and I was starting to sweat as the movements got worse. In the blink of an eye, my head was uncontrollable. It was shaking so violently that my entire upper trunk was moving, and I obviously couldn’t see the road clearly. I signaled to my right so I could pull over and luckily, there were no cars.  Even if there was, I couldn’t have seen it!

For the life of me, I don’t know how I pulled into the parking lot. I was shaking, drenched in sweat, and completely, wiped out. Someone had to come get me and drive my car back home. I have been homebound for 10 days now and I cannot wait for this to end.

Conclusion

There is no good ending to this story, not right now anyway. My hope is that I can describe my struggle with tremors and detail the process. That way, anyone having similar issues with tremors, will realize you are not alone! That goes for the Ataxia community or anyone in general.

But don’t think for a second, I have all the answers on this issue. I have been struggling for over 10 years with no solution. And every time my tremors are here, I wonder if they will ever go away. 

I must continue to believe these will end and a solution will present itself, at the right time.  Whatever your unique issue is…. whatever problem you are facing…….. just remember, it could always be worse!


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