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.
By Rhonda,
I guess I’ve had essential tremor all my life. I remember as a child, my mom took me to the doctor and he would have me hold my arms straight out in front of me with my fingers spread apart. Then he would give me some type of injection. I never knew what it was and my mom never told me.
I never knew I had essential tremor until I was in my late 50s. I went to a neurologist for something else and that’s what he told me. The minute he walked into the room and took a look at me shaking, he knew.
As I’ve gotten older it has worsened. I’ve tried to work at a coffee shop and couldn’t carry a cup of coffee to a customer. All of my life I’ve had people ask me why I shake. Am I scared? I’ve even had people laugh at me because I was shaking. Some people have said I’m on drugs because I shake, or am an alcoholic. I’m so tired of the embarrassment. I just want this nightmare to end.
I tried a medication called propranolol. But I was on blood pressure medication and other medication at the time and went into the hospital because I was sleepy and tired. That told me I was being over medicated. So I got off everything but the blood pressure medicine.
If I’m ever blessed with something that helps me with my tremors, I will be sure to share it.
This echoes so much of my struggle. I was born with ET, but nobody in my family thought it was a big deal (daddy shook, too, so it was just a thing we did,) so I didn’t start asking doctors about it until I was in my teens.
All throughout school, I was asked if I was cold, scared, etc. I have been asked if I was a “crack baby” or if I had Teal Alcohol Syndrome. I was able to laugh most of it off, but as I get older, they have gotten worse. I have seen the stares and odd looks when I am shaking so bad I cannot hand a cashier my money. Or the looks and whispers when I shake my food all over at a restaurant. I still brush most of it off, but I’d give anything for relief!
I’ve tried Primidone, but cannot take Propronolol (low blood pressure that tanks very easily.) I take Clonazepam for anxiety, but it doesn’t help the tremor. I’m keeping my fingers crossed that I can get DBS soon, as I have seen so much success from it! Good luck to you on your journey!
I had dbs last summer. My hands don’t shake, but it’s hard to speak. I guess that just the way it is for me. I like my hands not shaking!
have you had your batteries reprogrammed lately?speech can be a side effect of the wrong programming.
I know everyone is different but I have found when I have upped my protein amount per day the Tremors seem to be less.
Im sorry that’s happened to you. When I see that, I try to ignore it. What would you recommend to others?
Having Essential Tremor can be maddening. It makes it so difficult to perform my job and do routine tasks and showering, hair, makeup, etc. I am almost out of Propranolol. I’ve been to several doctors, neurologists, CT Scan, acupuncture, PT. I need to see another neuro but don’t want to be disappointed again.
Disappointed that it’s the 27th of March before I knew this was a thing. Let’s get some media attention at the start of March. If as a sufferer of ET and I don’t know about it. How can we hope to spread the word…… just saying
Are you on our mailing list, Kim? You can sign up to receive notices by email and mail, which would include information about National Essential Tremor Awareness Month. The sign up is at the bottom of our website, https://www.essentialtremor.org/.
I have had ET my entire life. Tremors are mostly in my head which causes people to think I am shaking my head at them or saying no. I wasn’t diagnosed until I was in my 30s and it was such a relief to have a name for it. I tried propranolol and it caused my blood pressure to drop to low. I take topirimate now and it helps unless I am upset or stressed. I don’t really care what other people think but I do look at others sometimes that are able to sit so still and I envy them so much. I would love to know how that feels.
I have had ET since I was 16. It runs on my mother’s side of the family. I believe I started at that age because I was on diet pills (uppers.downers{?} at that time) and was taken off them without a slow withdrawal. I saw a neurologist when I was in my 30s and told him what I had. He responded by saying he was supposed to tell me what I had. What a joke. I didn’t see him again but saw another in his practice. I couldn’t take inderal/propanolol because it gave me heart palpitations. He put me on an antidepressant which had me in tears constantly. I was taken off that and given diazepam as a last resort. I haven’t bothered with another neurologist since.
I am 52 yrs old and have ET. My symptoms are not yet severe but are worsening with age. My Dad and his mother, my grandma have them also. My Dad’s tremors are severe and have been life altering. He has tried numerous medications to no avail. His next step with Neurologist is to be sent to a specialist surgeon who will perform the implanting of the DBS (Deep Brain Stimulation) device. We are all very anxious for this but as you know anything medical moves extremely slowly. If this or other methods don’t work for him I don’t know what my poor mother will do. Currently she has to almost everything for him. Helps him bathe, get dressed, makes and feeds him most all of his food. It’s bad!
Does anyone know if any sort of Home Health is covered for severe ET??
Thank you.
I have had Essential Tremor for as long as I can remember. Alcohol was the only thing that stopped my shakes entirely. The specialist who diagnosed me said that the pills would only ever reduce it and not eliminate it. It has taken me to the age of 56 to finally decide that deep brain stimulation is the only way to go now. It is a shame this is an American site and as I live in Australia I cant sign up for e-mails
I was just diagnosed with ET as a nursing major in my freshman year of college. I have been unable to do any of my labs the tremors have gotten so bad. I have started taking propranolol, but the highest dosage you can take has stopped working. It is so hard to live day to day with this so young, but it is amazing to read all of these stories!
38 finally my name is liam
bless you…sounds so much like my husband – he is 64 and had un-diagnosed tremors in elementary school and every since. hoping/praying also for DBS as some point in future. thanks so much for sharing!
I have been treated for ET for about 25 years. Primidone is the only medication that I have been able to tolerate out of the five my Neurologist has tried. My right hand tremor makes eating, writing and putting on eye makeup very difficult.
Good news I want to share with you.
Two years ago I met a Lady from Michigan who was using CBS oil to treat children with seizures. The medication primidone is a medicine used to treat seizures so I started using it in a very small dosages. Taking 7.5 mg twice a day. Morning and bedtime. I did talk to my Neurologist and He said it would not hurt me if I wanted to try it
I didn’t stop taking my primidone.
I do think it helps make the trembling less.
I only have used the company Made by Hemp. Com. They have been in Business for years. They’re website and customer service is outstanding.
I prefer the Tasty Drops in 300mg strength or the Gummies that I cut into 3 doses because they only come in 1000mg. The side effect of being too strong is dizziness.
Good Luck and God Bless.
I developed ET (Essential Tremor) in January 2017 for the first time – it affects both my arms. Prior to this I had a 3 year period of ESD (Estream Sleep Disorder). I am not sure if the two things are related, does anyone else suffer extreme sleepiness with their ET? I sleep for 11 hours straight at night and also am sleepy throughout the day.
I first noticed my essential tremor in my hands when I was in college. My mother had it, and my son has it. I am now in my 70s. It has gotten worse and makes many tasks more difficult – cooking, hanging up the hummingbird feeder, turning pages…the list is endless. I tried primidone but did not tolerate the headache or lightheadedness well. I’d like to know more about cannabis; it will be medically legal next year in Missouri. Maybe that will work. Reading all of the stories here makes me grateful that it continues to only be in my hands and forearms.
Best wishes to all.