Didn’t expect it to blow up so much but there are so many people saying this is the first time they’ve seen someone else with ET. I think it’s so important that we’re visible so that others know they’re not alone with it like many of us felt for years. It’s nothing to be ashamed of and we need to normalise our condition. If nothing else, so fewer people ask annoying questions. 🤣

Is no one else freaking out about the factories coming to the US? How am I supposed to screw in a tiny screw for the new iPhones or stitching together a new pair of Nike’s without ODing on propranolol, should I go ahead and apply for disability now or wait??? /s

Hi everyone 👋

I’m working on a tool to better support people living with Essential Tremor - specifically around understanding how lifestyle, stress, sleep, and other factors affect tremor severity over time.

To make sure it’s truly helpful, I’m running a short (4-minute) anonymous survey to gather real experiences from people like you.

If you have ET, I’d be incredibly grateful if you could take a few minutes to fill it out:
👉 https://form.typeform.com/to/sFR2YCkD

The insights from this will help guide how we design this tool. Thank you so much in advance. If this isn’t allowed here, mods please feel free to remove - and if anyone has suggestions for better places to share this, I’d really appreciate it 🙏

Hi, I've recently started taking propanolol to help control essential tremor and it seems to work very well for me. This weekend, however, I missed a couple of doses. Last night, I kept getting woken up by my arms twitching or jerking. Not painful, though it did result in me smacking myself in the face at 5 in the morning!

Is it possible the twitches were a result of propanolol withdrawal? Has anyone else had anything similar?

I've heard about propranolol, betablockers etc. but these are all prescription and getting to the neurologist around here is Mission: Impossible, I'm asking for something to relieve it before I get to the doctor.

Is there anything else that can help me? I'm currently taking Mg-citrate and Acutil, and so far I feel 100% better in every way, except the shaking. I'd say it got even worse in the past few months (even before I started taking acutil)

Alcohol helps a lot, but you know, it's alcohol. It's qddictive and all that stuff

I get out in less than a year and it is already well documented in my medical record. I’m worried I don’t have enough proof to make it service connected but I know for a fact that my constant levels of stress and fatigue have progressed it faster than it should have. Any advice is appreciated.

Hanging on to anything for dear life, am I right? 😁😜

I can't find any ,medical research related to this, but I'm curious if others have experienced this. I've noticed that sometimes on rainy days with low air pressure, my tremor will get worse despite medication. Yes, I still experience other weather related aggravations with it, but I can't find anything about air pressure. Anybody else get this?

I have a head tremor that is really more of a twitch than a tremor. It usually is worst when I'm focused on something like typing this message or buttoning my shirt. My wife says she doesn't really notice it anymore, but I think she's just gotten used to seeing it. Anyways... I tried propranolol for a while, but it didn't seem to help. I'm now starting primidone and it does seem to help, but there is some anxiety and brain fog. I go through the motions, but it almost seems like I'm not really in my own body. I'm wondering if anyone else has had this experience and does it get better? I think I'd rather deal with the tremor than this feeling.

What do yall do when you're having an 'episode'? I know tremors don't really have episodes, but I'm pretty sure yall know what I'm talking about. I don't have access to any medications due to having no insurance (AGAIN), but I'm literally sitting here, uncontrollably shaking ten fold worse than my baseline. I'm not anxious, not stressed, hardly even doing anything. Any tips?

And it isn't just my hands. It is a full body complete tremor, which I almost never have like this. It's normally only ever a few things at once.

Like many of you I'm always trying to find another supplement or other idea to tame my tremor. Yesterday after searching on YouTube for solutions, I came across a young woman that described using acupressure to help with ET. I've just used it a short time, but the results have been good. I just tried drawing a spiral after using acupressure and the results were very good. She said to massage my middle fingers. I know, it seems too simple. But it really seems to work. After researching "Acupressure to help with ET, on YouTube, there were many specialists that explained there is a pressure point located three finger widths below the wrist to massage, between the tendons. I'd love to hear from others who try this and if it shows results. It's free. Why not?? I used propanalol for 6 months and stopped because it just zapped my energy, along with other issues, although is was effective to a degree, it was no longer worth it.

Hey all I’m currently pretty miserable and unable to get any more than three or four hours of sleep. I started to get terrifying sleep disruptions that I can only explain as feeling like my body is trying to shake me out of a terrifying episode. Like my brain is shutting down, but my body jolts me up, my heart rate jacks up I shake and breathe heavily.

I live very healthy, workout hard, eat clean and have regular meditation and rest practices.

I am beginning to think that this is acutely physical and not psychosomatic.

I’ve struggled with anxiety and panic attacks in the past, but I always seemed to get a hold of them with deep surrender practices, patience, and mindfulness.

For the last six weeks, these sleep, disruptions and seizure like sensations have really got the best of me.

During the days I have felt acute clenching sensations in my jaw, hands and feet. I can’t tell at the onset what causes them.

It’s ambiguous and terrifying . I’m seeing a neurologist who was quick to prescribe me primidone. It seems to help a little bit, but only cause it just kind of calms me down. I really would rather not become dependent upon a barbiturate. The sexual side effects among other nasty things are enough to scare me away.

I’m aware that occasional myoclonic jerks are very common in all people, but this feels like a fucking monster crawling inside my skin.

I had a brain MRI done yesterday (which I’ll get results back in two days). I have a sleep study scheduled.

I am also tentative to get an EEG done because I’ve heard how intense they are and how much they can misdiagnose a person. I’ve always been slightly sensitive to strobe lighting (makes me nauseous).

I really don’t want to get diagnosed with epilepsy and then have this be a huge complex in my life that might be something else .

Please help 🙏🏼🩵

Anyone had any mental or emotional issues while taking gabapentin? Since I started taking it about three months ago my mental health has completely spiralled - but I do have mental illness that has episodes of greater severity anyway, so I can’t be 100% sure if there’s a link

I'm an adult. So yesterday I did the deed for the first time. However I noticed I started to shake a lot more. This seems to also happen with arousal as both times I become dizzy. He says it's a good thing as it means I'm into it so I guess it's normal.

He thought I was close (and tbh I wasn't sure) because I was twitching a lot there too. Maybe I was idk. Was about to hurt but I expect that with a first time.

He was concerned asking me "...are you ok?". I told him I think it's my tremor and it's worst. I think it felt good for him though so I guess it's not all bad :). Still need time to get used to it and it might be making me dizzier.

Anyone else have this experience?

I have PD and ET diagnosed in different places so my current medications are not super effective... and I also have undiagnosed social anxiety I take care of with the given propranolol for ET.

How do you travel with plane when you have severe ET? My head and hand tremors are really bad right now. I am worried that the plane agents at the scan will think weird and off about me just because I'm shaking a lot. I have anxiety about the idea of them thinking I'm anxious and hiding something just because I'm shaking a lot. I'm really shy as a lamb in real life and I'd probably end up crying if I get accosted for tremoring a lot because they think its suspicious... I can't control my tremors at all.

Is there something I must do in advance to avoid such a situation? It is my first time travelling with a plane. Do I need something? Do I just put a sticky note on my forehead in big sharpie that I have essential tremors (just joking...)

I went to a shop lately to buy some things for home and was shaking so much a clerk kept following to look at me. Maybe they thought I was anxious and wanted to steal? I overthink it a lot. It made me so horrible emotionally. I don't want this to happen at the airport it's my worst nightmare right now...

New to ET but kinda wild story and looking for advice. In my late twenties (now 43) I noticed when painting or drawing my right hand would shake. At first I could steady it with my pinky finger but it eventually got worse and I quit art. within the last three years, my handwriting has become atrocious. I kinda brushed it off as I didn't really notice any tremors, just poor penmanship and I couldn't text with my right thumb. About a year and half ago, my head started doing a quick little shimy and it startled me at first. What the heck was that? It happened about 3x a week at first, and over some time quickly began happening several times per day. I brought it up to the doc once but we were trying to get through an icky mess with diverticulitis and put it on the back burner.

Fast forward to last December. I started getting tender spots of pain all over my body but at random spots. My head, my thigh, my armpit, my foot. Always random with no sign of unjustly or bruising. Just pain with touch or clothing. So I went to the doc who referred me to a neurologist. I first saw her Feb 25. We did all the tests. She diagnosed me with mild essential tremors and possible Orthostatic tremors in my legs. I started on primidone 25mg to be increased 25mg to 100mg total. The very next day I could see a difference in my writing at work. I was happy. But I felt like dog shit. It took a few days to realize it was because I had been taking THC gummies for sleep for multiple years and I was making myself sick. I stopped the gummies cold turkey (do not recommend) and went into withdrawals. Three days later, I looked like I had severe parkinsons. My head shakes almost constantly. My hands are worse than ever. It went from 0-100 in a matter of a few days. I went back to the neurologist with my head between my legs and she figures I was masking my symptoms for all those years and they were becoming apparent over time, peaking out. The skin pain is most likely due to really low b vitamins so most likely not related but that alone feels like I'm sunburnt all the time. I'm now about a month into this and up to 250 mg of the primidone. The problem is the neck pain. I didn't have a gradual increase in this and I'm constantly in pain. She assured me that the pain would get better but I'm struggling. I've tried ice and rest and otc pain meds. Heat and massage. It's too much. What have you done to help? I know there are treatments like Botox and DBS but I wanna tackle one thing at a time since this is all so new. Have you tried anything else or have tips for me? Thank you.

Started developing an occasional, positional tremor in my thumbs about 2 years ago. It's now a daily occurrence (but not all day,) and the tremor is more pronounced and in all of my fingers, but worse in my dominant hand. Still isn't limiting my activity. Neurologist said "I think it might be essential tremor. Just keep an eye on it and come back if it gets worse." Hmmmm. I also have benign fasciculation syndrome. Here's my question - Anyone else on here diagnosed later in life? And do you have days when you have almost no tremor at all? Thanks for your response(s).

Even after practicing for over 90 days straight now I still mess up basics, miss strings, hold the guitar wrong, etc. It's so unfair. Today I almost smashed it because I'm so frustrated and yes I had a teacher before but I only can get so far I feel before I reach that threshold between beginner and at least decent at the instrument

I'm a 51f and have had hand tremors since childhood, legs on occasion since 30s and body and head in the night since late 40s.. recently nightly and interfering with sleep. A couple of weeks ago my GP prescribed propanalol and bingo, it seemed to be the magic bullet I needed. I never felt the calmness people describe but the tremors were minimal. The last few doses have resulted in a feeling like a bowling ball in my chest/neck. Not pain or tightness just full and heavy. I have researched and can't find any description of side effects like it. Idk whether I am intolerant or this is a normal side effect. BP and pulse are normal.

Tldr: propanalol gives me an odd chest feeling.

Recently I've joined an Internship in a software company , Now my tremors are really interfering me and taking away all the confidence , I also have social anxiety I guess , Its mostly related to my tremors ,I fear that people might notice my tremors , Which makes me more nervous!! What should I do??

Hello, I'm (38F) hoping to get some advice. I was diagnosed 2 weeks ago with essential tremors and decided to accept the prescribed primidone, which I'm already familiar with bc hubby used to take it when he got his PD diagnosis. It has helped greatly, I didn't realize my internal tremors were so bad (thought majority of it was anxiety). I've had slight hand tremors since maybe my preteens/teens but they've gotten worse the older I get..

That said, the neurologist I saw was not thorough at all and was quick to diagnose. I don't doubt I have ET but he didn't order any other tests or bloodwork or anything to rule out any other possibilities. I've scheduled an appointment with my pcp to get a second referral but the problem is, there are no movement disorder specialists anywhere near me. There's a clinic 2hrs away but the reviews are awful and that's just not a risk I'm willing to take. I can't afford to drive all that way for a likely bad experience. They're also very difficult to get into.

So, idk what to do. I know regular neurologists aren't specialized but should I try again and hope they rule out other possibilities?

One thing that is making me question (aside from the obvious lack of thorough testing), is, while my tremors are gone, I'm still having these episodes, for lack of better word, where I get head tremors/ shaking (yes/no,etc movements) that are intense enough to make my upper body rock back and forth, major hand tremor in my left hand, vocal tremors and difficulty speaking, increased eye blinking, muscle spasms, headaches and on a rare occasion leg jerking. The whole experience is overwhelming and I usually end up crying or tearing up. I try my best to breathe through it, as getting upset and crying only makes it worse.

So yea, idk of those are flare ups of ET or if it's something else. I am on mental health medications and that doctor told me that if I get a full neurological clearance then she'd look into treating me non epileptic seizures.

Sorry this was so long, and please be kind. It may be obvious to others what I should do but I'm overwhelmed and options are lacking...

I have had a tremor in my hands for about 5 years now, increasingly getting worse. Recently I've noticed that the ET really escalates when I yawn. Has anyone noticed similar things or any idea why this happens?

Hello!

Our team is creating a prototype and business plan for a new hand tremor aid product in our undergraduate entrepreneurship class. 

This survey is to help collect data and ideas to help us brainstorm potential uses and features the Parkinson's and other communities would like to see in a new assistive product.

This survey can be answered from the perspective of those with hand tremors, family, friends, or caretakers.

Every answer and idea will be greatly appreciated! Thank you for your input and ideas!

I have my first neurology appointment with a neurologist for essential tremors in two days. I’m currently a freshman in undergrad, and it took me a whole year to finally decide to pursue pre-med because I was weighing out the potential of having these tremors getting in the way. I kind of gaslit myself saying it mostly gets worse only with anxiety or if people are watching me. Basically told myself it was just anxiety even though I knew it was a tremor because I wanted to give myself a shot at pursuing what I really wanted. I’m kind of heartbroken to say this, but after being in microbiology it is difficult to even run tests or pipette things because my hands are much more shaky than I ever noticed. It’s always been a dream of mine to pursue medicine, but should I switch out now while I still can? I can’t ever see myself being able to place an IV into someone or doing any small procedure on somebody. I would never want to pursue surgery or anything like that, I’ve always been interested in psychiatry or neurology and I know that they don’t really have to do super minuscule things with their hands, but even so, do I even have a shot in med school or residency at this point?

EDIT: Honestly, this was my first ever post and I never expected to get such helpful feedback. I’ve been literally juggling with what to do with my career choice for the past two years. I even gave up playing the flute because it was getting so obvious I had a problem with my hands, and even playing golf was getting in the way. Just started day two of propranolol on only 10mg. I see a huge improvement in lab, I mean literally it is crazy the difference it made. I’m so passionate about microbiology and it honestly made me so happy even just streaking a plate smoothly. Also answered a question in class without my heart rate jumping to like 130?! ET still there a little bit but honestly I really don’t mind, it’s even only the lowest dosage is. Crazy the difference medicine can make. Thanks guys :)

For 12 years or so, I’ve had facial spasms that are triggered by facial muscle contractions. For example, smiling will trigger unsteadiness around the lips, nose, and cheeks. Raising eyebrows will trigger around eyebrows/forehead.

This is infinitely worse in social situations. It turned me from someone who handles social situations very well to someone who avoids them unless I’m using propranolol. Stimulants also make me worse. Dehydration makes me worse too.

I’m curious who else deals with this and if you’ve found anything else that helps you? I personally was much, much worse back when I regularly drank alcohol. I also drastically improved when I removed gluten and various other trigger foods from my diet (I have an extremely sensitive gut). I made these lifestyle changes in 2019. The spasms still prevail, just not as drastically or consistently as they were before 2019.

For those of you that suffer from this, do you have any other health issues? Like gut issues? Back issues? Neck issues? TMJ? Brain fog? Feel free to mention anything at all, even if you think it doesn’t correlate. Also, feel free to list things that make your condition worse.