I’ve done a few posts detailing Jake’s health struggles over the last little while. For some reason it isn’t a big deal to explain his health problems, even though some days I feel like the setbacks hurt us both equally. Now, though, I thought it was time to share my journey with Essential Tremor, because I feel like there might be someone out there reading this that has no idea why they shake- and this might help you.
I’ve never really shared my issues with you all, mostly because I had no idea it was a problem that could be diagnosed. I thought at 14 I developed a weird shake in my hands and that was just something God wanted me to live with as I aged. We all are given a cross of some kind to bear, at least I believe this. I thought this was mine.
It wasn’t so bad for a really long time. I’d have really shaky days and days where I was perfectly still. Days where I only shook ‘inside’ and days where I couldn’t write legibly, paint my nails or even pour a drink without spilling it everywhere.
After Addie was born, the shaking grew worse. I adjusted. Piper came, even worse still. With each pregnancy though, I began to lose strength in my hands, I was having nerve pain in my right arm. All nerve test I’ve had came back negative for damage.
It’s almost been fourteen years since I started to shake, and over the last two years I have gone downhill pretty quickly. I told you all in this post that I have driving anxiety. My tendency to begin to tremor out of nowhere is a big part of that fear. When I start to shake, I don’t have a whole lot of control over my movements. So as you can probably imagine- the thought of driving with my girls in the car and causing an accident of some kind is terrifying.
After being told by my doctor for two years that it was a physical manifestation of anxiety and a psychiatrist would be my best bet, and psychiatrists telling me anxiety medicines were addictive, I finally demanded a neurological consult. Things finally got bad enough that we said this can’t be something as simple as anxiety.
My tremor started to move to my head about four months ago. I have what is called a yes/yes tremor in my head. Sometimes it also causes me to have trouble getting words out. I also have migraines, and this new tremor has made my headaches so much worse.
My husband has lovingly nicknamed me: Bobbles. We try to lighten things up by laughing at ourselves. While I do get highly discouraged and embarrassed when I shake in public, I think I will get over it in time.
While waiting for my neurology appointment, I started to so some research, as one does. After a lot of reading I pretty much convinced myself that I did not have Parkinson’s Disease, my biggest fear. This was different, thank God for that. I learned about something called Essential Tremor. I kept this in the back of my mind with a couple other possibilities to talk over with my new neurologist.
At the appointment, my doctor, quite possibly an actual angel from heaven, sat for an hour with Jake and myself. Listening, testing my strength, feeling in my limbs and movements, and listening some more. She agreed that her gut told her Essential Tremor as well. Our first step is lots and lots of blood work, and a MRI.
We are scanning my orbit (my left eye), my brain and my cervical spine. This will help her to rule out something more insidious like a tumor or MS. Once those things are ruled out, we will start treating the symptoms of my tremor and migraines.
There is no cure for this and it does get progressively worse with age, but there are ways to treat it. There are medications and even an amazing surgery called Deep Brain Stimulation. So I am optimistic that I have a lot of options in front of me to live a better life after my official diagnosis.
Even if there is no cure, there are ways to make it to where this is not something that stops me, or debilitates my life any more than it already has. I look forward to learning to hand letter, and other normal things that are just hard for me. I look forward to being normal or at least more normal soon.
I’m sharing this because I have gone so long being told to try this antidepressant or that breathing technique. I’ve waited a long time for someone to actually hear me. I’m sharing because if there’s one person who is maybe 16 and wants to know why she can’t control her body, that it is not normal. It is not something you need to learn to accept. There is a reason. A legitimate reason for your movement disorder. It’s important to fight for yourself, as I have learned. As my smarter-than-me husband has been telling me for years.
All of that said, I wanted to share with you a couple things that could help you along your journey to see if you are struggling with Essential Tremor as well.
- If a family member of yours has ‘the shakes’, you can inherit the trait, but you also might not! If we are correct in my diagnosis, it’s pretty obvious I inherited this from my grandmother, it skipped my dad and voila, a bobbles is born.
- Essential Tremor usually calms down when you are at rest, and this is one of the main things that differentiates this disease from Parkinson’s Disease, as well as it affecting both sides of the body as opposed to just one side.
- It usually starts in your hands. It can spread to your neck, head vocal cords, tongue and limbs.
- Anxiety or other strong feelings can trigger a tremor but it is not usually the reason a person has tremor. My neurologist explained to me that she things my tremor is made worse by situations where I am having strong emotions such as anger, being overwhelmed, and even being excited!
- It is important to see a neurologist, because the first step needs to be a MRI and blood work to rule out autoimmune diseases, nutritional deficiencies etc. So if you feel like this is you, tell your primary and ask for a referral.
- This video is extremely educational, it was sent to me by a person I met on Reddit with Essential Tremor. He is great at explaining, and can maybe also help you along your journey to finding a diagnosis.
- A child of a parent with ET has a 50% chance of presenting with a tremor at some point in their life. It may be worse that the parents, not as bad or it may not show up at all.
I hope me starting to share this journey with you guys helps someone. Even if it isn’t a movement disorder that you struggle with, I hope to encourage all of you to go with your gut. Trust how you feel. If a doctor is not listening to you, tell them what you need, and definitely do not be afraid to fire your doctor. I was not offered a neuro referral, and I don’t know if I ever would have been. So, ask. Tell. Demand. Because in the end you are the one living your life- not any doctor.
Tell me below, do you struggle with a movement disorder? Or something else that is considered a lifelong incurable illness? How do you cope with your diagnosis? What treatment has worked for you?
Double points if you are a Deep Brain Stimulation success, tell me all about it!