March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others and share your comments and words of encouragement.
By Anna,
I first noticed I had a head tremor when I was approximately 10 years old. I remember people would ask me why I was shaking and I really didn’t know. And at that age, I didn’t seem to care that much as it didn’t happen that often. I actually blamed it on a neighbor pushing me out of a tree when I was around that age. I thought I had jolted something out of position. My dad didn’t have his tremor yet as it only came on for him when he was well into his 60s.
As I got older and into high school, the tremors seemed much more frequent. But as long as I kept moving (didn’t stay still) they weren’t noticeable. So I began vigorously shaking my leg when I sat still, especially in school. I remember my teacher asking my mom if I did drugs. My mom just said “she’s a bit anxious” which also was true. The hardest part was feeling out of control and not really knowing why.
After I graduated and found out I actually had essential tremor I decided to try some different medications to see if I could calm it a bit. I tried gabapentin, topiramate, propranolol and primidone but none of them were worth the side effects they brought on. I even tried Botox injections in my neck but after all the pain and the money, I felt no relief. I started taking antidepressants in my early 30s which helped me deal with the tremors a bit better than without them.
Into my 40s, I found out about deep brain stimulation (DBS) surgery and from then on I was on a mission. You see, I was starting to become an introvert. I hated going anywhere where I had to sit still. I had three beautiful children and worked full time at a bank and as long as I could move a bit I could camouflage the shaking. Honestly, I think it was way more pronounced in my own thoughts than it actually was outwardly. But that didn’t matter. To me, I was a freak and I couldn’t stand the thought of people looking at me and either wondering what was wrong or feeling sorry for me. It was really hard to concentrate or focus.
“I can’t count the number of times people asked me if I was cold and I would say yes just because I didn’t want to attempt the ET story and have them feel bad for asking.”
Whenever my bank manager called a meeting, which was almost daily, I literally felt sick to my stomach because I WAS IN THE DREADFUL SITUATION OF TRYING TO SIT STILL AGAIN. And it was actually physically painful because the more I tried to sit still, the harder it was. It was like an internal/external battlefield and all I wanted to do was fall asleep and be still.
The dentist was just as bad or worse. And the time I had a small precancerous spot removed from my forehead was absolutely horrifying because the nurse could not hold me still while the doctor cut me. I even stopped going to church, which I only started in my 30s, but was enjoying. I do remember praying, “Oh Lord, please take this tremor from me!”
Well, in 2006 my prayers were answered! I got my double deep brain stimulation (DBS) surgery. It worked! I was over the moon. I had to get my chest opened again in 2011 and 2016 to get new batteries, which as fine. In 2018, I needed new batteries again and I noticed my tremor coming back quite a bit. From 2006 until 2016 whenever I noticed my tremor creeping back, I would just turn up my stimulators and I was pretty much still again. But the downfall in turning them up was that the wires implanted in my brain were so close to my speech center that every time I turned them up it would be a little harder to talk. Unfortunately now, 13 years later, I sound like I have a speech impediment and it is a chore to talk. But don’t get me wrong, I will NEVER regret the surgery and I will take the speech issue over the tremors any day.
Now I’m hoping and praying to get the new focused ultrasound surgery. I am always positively searching for a better quality of life. So my advice to anyone else suffering with ET is: do what feels best for you. The DBS was an absolute godsend for me and gave me 12-13 years and it’s still not bad, but if the new surgery can help my speech and I am eligible, that will be my next quest. I want to live my best life.
Hi Anna,
My name is Dave, my tremor started when I was in my early 20’s, by that time I had delved deeply into a career I loved, precision welding. I know it may not sound like much, but I have a bit of an artistic streak and I threw that into every assembly piece I put together. As the years went on I found it more difficult to make that perfect weld that I was so proud of, as a result my work slowly suffered as much as I did because the work was still going to be as good, but it would take longer, by having to correct mistakes. During this time I noticed my dad and my brother both had the shakes in their hands and arms, by the time my dad passed he couldn’t carry more than a half filled glass of anything, he always refused any sort of treatment. I’m beginning to understand why! As soon as this began to effect my life I started talking to my doctor, my PCP, who at the time was clueless about ET, but smart enough to get me to see a neurologist, then it was trial and error for several years with a lot of different meds and dosages. I had some that made me sleep all day, some that put me into a rage after taking it for about 4 days, buut then they tried me on one of the oldest meds, usually used for epilepsy, Mysoline, more commonly known as Primidone. As always, I started on a low dose and worked my way up, to what I still take today, 250 MG 2X/ day. It didn’t eliminate my ET, but it was more manageable and I realized it wasn’t a stigma, I didn’t have to hide it from the world, especially if I wanted to belong to that very same world. I went from being the teen who would think nothing about taking a pair of tweezers if someone got something in their eye and plucking it out, I had to turn my life around and not be embarrassed about a defect in my nervous system. I actually started writing this as a warning. You see, about 5 years ago, I had a slip and fall, which end in back surgery, L3,4,&5 fused so I could move and not be in constant pain. It also increased my tremor, my neurologist doesn’t understand the how of increase, just that a shock like that to your nervous system can compromise an unbalance that has already been there. So, I’m looking at more meds and this is a new neurologist at a very prestigious medical facility, so I of course looked her up before seeing her and she is very well respected so I was very relaxed when we went over my past history with other meds that had failed me, I was at the max I could tolerate with the Primidone, even a 1/2 a tab more caused me double vision, so she recommended something fairly new called Topamax. Did 2 week trials starting at 25 MG 2X/day until I reached where I am at 100 MG 2X/ day. the stuff really did the trick, my tremors are nearly gone. Now at 62 yrs old I find a combination that would have made my career soar or so you would think! I’ve been on this for several months now, I don’t even know how long, I’d have to check my calendar for when I last saw her. You see, this med, while it works great for ET, it robs your mind, they even have a nickname for it “Dopamax” because it makes you foggy! One of the side effects is even dementia(worst case scenario). I’ve been seeing another doctor for memory issues that just been getting worse and worse, who put me on Adderall for it when it could just be the Topamax. Memory issues, confusion, slowed alertness, concentrating, paying attention, all listed as side affects which the doctor never discussed with me. Now I am retired and spend my days with my wife who gets very frustrated with me because I can’t remember a few simple list of things that I should be able to, to go to the grocery for. Sorry to drone on so, but I wanted to get my whole story out there, hopefully, someone will read this and be more educated as a result. It’s all I want, thanks, good luck to you all!