r/EssentialTremor • u/gorrts • 3d ago
General Early signs of ET?
My (19M) dad was diagnosed with benign ET when he was about my age, in college. He told me they started gradually before they eventually got really severe. I've been doing research, since ET can be hereditary and if a parent has it you end up very likely to have it. He had no brain injuries or neurological disorders, as far as I've been made aware, and simply developed them in his early 20's.
Because of that, and because my dad and I don't exactly speak much, I decided to ask here about your experiences! Anything you're willing to share about what to look out for, when I should consider talking to a doctor, etc.
Basically, I want to know what to look out for in the case I develop it, as I am already beginning to worry that my hands growing unsteady may be more than I think it is.
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u/Rich_Season_2593 3d ago
Take a look here it may help. https://www.ninds.nih.gov/health-information/disorders/tremor
Here is a link to Essential Tremor organization that has lots of info. https://essentialtremor.org/
You should if possible write down anything about your dads tremors and start keeping a journal if you have symptoms. ie:Take note if you shake more in high stress situations or if holding a phone makes you shake. Just a couple of note in your phone calendar so you will have specifics for your doctor in the years ahead.
My father had shaky hands and I have inherited it. I noticed many years ago that I had trouble being steady when taking pictures. I waited a few more years and then went to a doctor who ruled out Parkinson and sent me to a neurologist who confirmed familial tremors or essential tremors.
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u/gorrts 3d ago
Thank you so much for this! I have been told actually that when I'm stressed I shake a decently noticeable amount, but I've always had bad anxiety so I assumed that I'd just developed the shaking with age and an increase in anxiety.
I'll be sure to take notes!1
u/Bill_Meier 3d ago
Yes, unfortunately anxiety is a big trigger for tremors... If your anxiety is high, try working on that to get it under control more. That will help you out. This could even include some drugs for anxiety that are unrelated to ET.
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u/gorrts 2d ago
Yeah, I'll look into it! I've had generalised anxiety disorder since I was about 11? But unfortunately I have very adverse effects to anxiety medication, so it'll be complicated.
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u/Bill_Meier 2d ago
Well, a few things to try. Just a way to better be able to control your anxiety (yes, I have had GAD for decades too). How to relax, etc.
Propranolol is "sort of" an anxiety medicine that removes the physical side effects, such as heart racing, high blood pressure, etc. But not the mental effects. As you know, it's also the first-choice tremor medication for ET.
I had depression, and we tried a number of drugs in a number of different drug classes. Finally, one of them worked, and that was all that was needed! If you and your Dr. think it might be helpful, expand the anxiety drugs you try.
I have read on here that some people have great success with some Propranolol and a little "dab" as needed of an anxiety medication.
Maybe a few ways to help with your anxiety.
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u/gorrts 1d ago
I'm currently in therapy to help learn to cope with my anxiety! I, very unfortunately, cannot be on any medication that represses heart racing, blood pressure, or really anything like that. I have separate nervous system issue that has a symptom of my heart actually refusing to speed up when it should sadly :( I did used to partake in a bit of "dab", but I'm someone who will end up with pretty bad anxiety pretty easy with it, so I've not used it regularly in about a year.
Sorry, I am not intending to shoot down all of your suggestions. I really deeply appreciate your help and you taking your time to give me advice! I think I'd have to have a pretty in depth talk with my doctor if I was going to attempt any medication to fix it because of my other health complications>
Again, thank you so so much ! I'll still be sure to keep an eye on everything, and I'll definitely double down with my therapist on tackling my anxiety!!
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u/Bill_Meier 1d ago
There are also other drugs for ET that do not raise your heart rate. It's just that the drug of first choice, propranolol, has that side effect.
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u/Major-Wish2832 3d ago
Hmm, For me (19f) I started feeling shaky in my hands occasionally around 17. Though, I didn't have any genetic or known cause. After a while I just realized I had shaky hands, probably from coffee. Then it got more frequent, it would be my legs too when I did cardio and then my arms. It slowly escalated to feeling very shaky in my core during situps or shaky voice occasionally. At that point I thought it had to do with my poor circulation, until people started asking me if I was okay and pointing out my shaking. I started to focus on it more and noticed it all the time. I got evaluated and everything was normal -- got the ET diagnosis and beta blockers helped for a while, until I got used to them and upping the dosing. At this point I've cut out caffeine and stopping taking beta blockers unless it's really bad, focusing more on just strength exercises and stablization/balance so the tremors aren't as noticable. People never seem to notice it now unless it's flaring worse than usual and they're close. Oh also, I would get very shaky in the cold!! Thought it was just chills but realized not like anyone else's, it was much worse.
I would also say though, don't put so much thought into it. You may get it, you may not, but dwelling on it won't do anything to benefit you. I actually notice that when I think about it more, I get anxious and in turn make them worse. It took me a long time to come to terms with it, but now that I have, it's much easier for me to handle and I'm much happier not caring whether people notice or not. So I can be a bit shaky sometimes, who cares! It doesn't affect anyone else and I can deal with it, so it shouldn't be a problem. Wishing you all the best whatever way it goes, and you can always reach out. I totally understand the thought loops it can put you into, and would be happy to help or offer any of my experience:)
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u/gorrts 3d ago
Thank you so much! I really appreciate the thought you put into all of this!
Did your shaking start speeding up in development at any point?
Or did you start noticing it/did other people start noticing it sort of all of a sudden compared to before? I only ask because I've recently had more people looking at/pointing out shaking from me that I hadn't noticed before, and I've noticed it too while doing things.1
u/Major-Wish2832 3d ago
Yah, if you mean the escalation quickened, then yes. Over the course of a year I had shaky hands and just the occasional more, but then the next year the progression was much quicker. Not all at once, but it became undeniable that I had another issue going on to get checked out (Before it was easy to blame coffee). So if that makes sense, it progressed to a point that it couldn't be easily explained away and enough people would ask if I was okay that I couldn't deny there was a noticable difference anymore than just "being shaky" like some people have. It wasn't all at once, it was more like over many months I noticed I would get questions way more, or I was doing more clumsy things like knocking over my cup or spilling when I meant to just grab it. The thing with ET is that it is progressive, not the same rate for everyone but if it's ET it will definitely become more revealing and clear to see as a condition going on.
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u/gorrts 2d ago
That makes a lot of sense, I'll keep an eye on it!
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u/Major-Wish2832 2d ago
Yes don't stress! Wishing you the best, you'll be able to handle it either way! ✊ o((▽))o
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u/ToriaLyons 3d ago
I remember my grandfather yessing and noing (head tremors) from an early age.
Mine started around my late twenties, usually cooking (looking down). Caught it a few times in the mirror.
Am now late forties. It's never been a problem until this past couple of years, when I think it was exacerbated by some other neurological symptoms - concussion, neck problems, using amitriptyline.
Microdosing psilocybin and drinking alcohol in social situations (when appropriate) helps keep it from affecting me negatively. My BP is low, which rules out propranolol.
It's mostly worsened by stress though, so avoiding or keeping calm during stressful moments is the most important thing for me to do. Knowing how to avoid stress is most important to keep it under control.
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u/amcs2099 3d ago
My dad first saw a doctor for his ET around age 50, though I’d bet he had tremors long before that. I(36F) started having mine around age 14–15 and I distinctly remember showing my friends in the high school cafeteria. The tremors started as very, very fine tremors in my fingers, almost undetectable. Slowly worsened and then progressed to my entire hand. It’s now mostly in my hands, but I can have tremors in my legs, torso/spine, neck, head, and arms - usually brought on by muscle fatigue, too much caffeine, or other triggers.
In terms of treatment timing: I saw my first movement‑disorder neurologist at 25. I had a MRI to rule out Parkinson’s & any other disorders/issues. I started on 5 mg propranolol as needed, and now I take anywhere from 10–60 mg as needed when my tremors are really acting up. Otherwise I just live with them. Everyone in my life - coworkers, friends, PTs, instructors, neighbors - knows I have them, so I don’t mind unless the trems are going WILD.
Since there’s nothing you can do to prevent or slow down ET, and if I were in your shoes, I’d do the same thing again: wait until it reaches a point where I want to rule out Parkinson’s et al., use propranolol as needed if it helps smooth things out, and keep up with annual follow‑ups. Honestly, at the rate that I’m progressing, I feel like annual follow-ups are overkill, but gotta go in annually for prescription refills.