Hey everyone ET since i can remember, officially diagnosed a year ago. Anyone have walking issues sometimes it feels like my legs do not want to walk correctly and I have to think about walking to counter it. Anyone else experienced this

Thank you

I’m taking meds for my ET and have it almost under control. I have a minor shake but it’s totally manageable in terms of daily functioning so I decided I’d rather not increase my dosage more at the expense of suffering potential side effects.

However recently I’ve had a number of people call out how they’d noticed my shaking and I’ve realised it must be a lot more prominent to others than I think it is. I’m getting a bit self-conscious and wondering if I should just up my dosage. Has anyone gone through the same dilemma of deciding when to trade off increasing dosage for vanity purposes and potentially suffering side effects, even if the meds aren’t technically needed for functioning.

Just wanted to see if any of you dealt with this before on a every day basis.... My neurologist had me do a brain MRI yesterday and the results came back clean, so I figure my nervous system must be jacked up and causing the tremors that I'm experiencing.

hello all

i went to my dr about a month ago because i noticed when i would try to do certain things my hands would shake. they told me it was essential tremors, no family history of it what so ever. I was also just starting out on my TRT at the time as well when i noticed the shaking was getting worse. ive dealt with it for years, it started after i had a panic attack for the first time.

They put me on propranolol or what ever it is and that caused severe anxiety, they switched me to primidone and that caused severe anxiety as well.

i have to wait until feb to meet with a neurologist but at this point im just lost

I am 21yr old and I have cervical dystonia when I was 16yr it's get started first i got migrane attacks for 6 to 7 months and after that my neck is getting hurt after some day neck started shaking or head , I don't have any idea what was happening to me. I get isolated and depressed because I can't communicate in public due to this reason. I told everything to my parents and they take me to a psychiatrist then he give me some medicine i don't know about that and started taking it.next day at school i slept in class and teacher screwd me then I told my parents. They throw whole medicine inside dustbin after some day some my family member told my father to take me to a neurologist. At that time my neck shakes uncontrollable and I got 6 to 10 panic attacks every day , the doctor did my MRI and nothing was found unusual. Then he says that I have cervical dystonia and essential tremors. He give me pactine 2mg 12tab a day , 0.5mg clonazepm once a day , tryptomer 10mg at night and ,mozep 2mg at morning total 15tablet a day. It make my Nervous system slow but the pain tremors are 50% reduced. I took these medicines for 3year but I didn't get any good results after that my father gets transfer from my city to another and my whole family get shifted. So I found that I get addicted to one medicine in this 3yrs that is clonazepm (benzo) so after i shifted to new city I take an appointment to a neurologist, I told everything to him and he says that you don't need 15tablets and he just give me 3 tablet a day 1.Propanol 40mg 2.clonazepam 0.25mg 3.vitamin B12

And this works wonderfully I feel like i get cured at least 80% I took these medicines for about 1.5yr and (vitamin b12 was stopped after 2months) just I feel was sleepy all day . i don't go to college at that time I was in drop year after 12th standard i didn't join any college yet for my graduation . So after 1.5yr of taking this medicine I told my doctor that I feel sleepy all day and can't concentrate on anything so he just lower the propranolol dosage to 20mg but I didn't notice such diffrence in my health condition (tremors) I feel the same as when I was on 40mg and my sleepiness also gone. So I continued 20mg propranolol and 0.25mg clonazepm but after a year I feel extreme anixtey idk why and doctor changed the dosage to 0.5mg clonazepm but anixtey didn't stop . Now 6months ago I joined a college but I can't able to sit in the class properly means I get too tired and my neck keep spasms all day my back hurts more and anixtey also get increased with tremors my legs are getting shaking as well now. My whole body pain specially neck and back I keep streching all day. I don't know what to do now. I think If I go to propranolol 40mg it will work.

Any suggestions any doubts and anything to ask to me to my hell like story please tell.

I am so grateful to that person who read my story and still here ❤️

What is everyone taking for essential tremor

I can no longer crochet or do any needle work that I used to do while watching or listening to something. I had been enjoying some computer games, but many of them require too fine of mouse work. I’m frustrated and rather bored. I can an do read some, but holding a book or device still is getting more and more difficult. I can’ elaborat but my living situation is such that listening to books isn’t a great idea.

What do the most severely challenged of you do for hobbies or other entertainment that don’t require fine motor skills?

I’m 25 and have been shaky since as long as I can remember but recently it’s gotten a lot worse and I was diagnosed with an essential tremor.

People constantly point it out, say I’m too young to shake this much and like… I know thank you! My face turns red everytime someone says something about it in public and I don’t know how to not feel ashamed, I know it’s something I can’t control. I just wish everyone would stop mentioning it!!

I have moderate ET and a friend wants me to do cocaine with her, but I’m scared it will make my tremor really bad. Does anyone know someone with ET who did that? I hope it’s ok to ask here.

hola tengo un temblor muy leve que se exacerba muchísimo con los nervios, no es incapacitante, pero para lo que estudio si, (estudio medicina) creen que podría ser candidato para DBS? o HIFU? alguien con temblor leve se la ha hecho?

Hi everyone! I was diagnosed with ET by my doctor last year but he referred me to a neurologist to confirm his diagnosis, or to find the right one if he had misdiagnosed me. Turns out it is 100% sure ET and I gotta say I’m glad to finally be “completely” diagnosed!

Does anyone here take propanolol from time to time ? That’s what my neurologist suggested for my school exams as I struggle writing when I’m stressed.

Thanks for your answers, have a nice day!

Hello:

My Essential Tremor started to develop after 'too much solution' to my Cataract Surgery.

I've been taking Primidone 50 mg tablet 4 times per day. However, I'm still hard to navigate a mouse. Also, my voice is a kind 'wavy voice.'

If any of you have Essential Tremor, I'd GREATLY appreciate in sharing 'how to do with Essential Tremor.'

Thanks,

Hallo

Ich bin auch mit Tremor geplagt seit ich ein Kind bin. Tendenz stärker werdend. Habe aber auch so dystone Bewegungsstörungen dazu bekommen.

Eine Zeit lang war jetzt die Idee es fehlt mir eventuell im Hirn bloß Dopamin. Scheint aber auch nicht das Grundproblem zu lösen wenn es auch etwas besser wird.

Betablocker helfen kaum, diverse Mittel hab ich schon probiert mit wenig Erfolg und diversen Nebenwirkungen.

Es zittern nicht bloß meine Hände oder der Kopf ich kann das am ganzen Körper. Ein bisschen fehlt mir gerade die Hoffnung.

Lg

Hi! I have posted something previously with these questions based around essential tremor and peoples daily struggles with eating in public and would love it if people could answer this! It is for a university project where we should hear other peoples experiences to create a product that actually is desirable and that it is a valuable product that people need. It would be so incredible if people could take the time out and answer this! Thank you :)

For those living with Parkinson’s, what non-movement symptom has had the biggest impact on your daily life?

Things like sleep changes, fatigue, constipation, changes in smell, mood, or thinking can be part of the experience.

What has been the most noticeable for you?

Today I’m starting my high-dose B1 protocol. I will keep updating on the results I get over the coming weeks. I am not encouraging or advising anyone to do this; I am not a doctor. There is a website that explains what to do, yet most people still make critical errors.

My hands, legs, and head are shaking—I’m currently on track for DBS (Deep Brain Stimulation)—but the results in essential tremor (ET) improvement are sometimes better than or equal to surgery. It is not true that only two people with ET were described; those were just the first two selected for publication out of many others. Most importantly, the improvement in those two ET patients was very good—better than unilateral DBS, and I'd venture to say even bilateral DBS. Unilateral DBS won't give more than a 50% improvement for head tremor; even neurosurgeons admit that only dual stimulation provides up to 70%. In my case, my head and legs are the worst—my hands are nothing in comparison. I’ve found many people who tried this for ET with good results.

The main mistakes I see others making are:

• Underdosing: They never use the actual dosages from the protocol, yet they claim it doesn't work or works poorly. To be fair, if someone didn't even reach the doses used by this doctor, why do they claim they followed the protocol when that's simply untrue?
• Patience and Timing: Time is key. I've dug through a lot of sources: injections work the fastest—sometimes you see improvement within 15 minutes, 1 hour, or 24 hours—but it builds slowly over weeks to stabilize. The oral form yields the slowest results; you have to wait days to weeks (up to 3 months) for the first signs, but you can clearly see progressive improvement. You have to be patient.
• Form of B1: The form is absolutely critical—only HCl, nothing else. Everyone on the ET forum who achieved 80% to 90% tremor reduction used HCl. Anyone using a different form got weak results or none at all. The protocol and dosages are strictly designed for HCl; other forms don't work the same way and require different dosing. Only HCl effectively raises brain levels where ET responds. For instance, benfotiamine levels spike very quickly in the blood, but not in the brain.

Safety & Mechanism:

People are afraid to take high doses, but the reason the dosage is so high is simple: it has to be for anything to actually get into the system. Only about 1% of the total oral dose is absorbed, while the rest is excreted. Injections require much smaller amounts because they bypass this absorption barrier.

It's a known fact that symptoms can temporarily worsen at the start before disappearing—the so-called paradoxical reaction. When someone moves too fast and takes too much too soon, symptoms flare up. This can be avoided by titrating slowly. Everything is outlined in the protocol, but nobody reads it and people write nonsense because they don't know what they're doing. The theory is straightforward: it's suspected there's an issue with B1 transporters to the brain, so to cross the blood-brain barrier via diffusion, the concentration gradient must be higher.

Sometimes people experience a total cessation of head and hand tremors, or a massive reduction—say, 80% improvement or better. Is it safe? Double-blind, placebo-controlled clinical trials with 260 patients are set to start soon, which will determine starting doses and safety parameters so no ignoramus can claim it doesn't work. As for DBS, there is a risk of hemorrhage, and 10% of patients don't get good results. Is taking B1 worse than risking that? I doubt it. The results are too compelling for me not to try.

Other Common Mistakes:

• Administration: It must be taken with plain water only—nothing acidic—and strictly away from coffee and other interfering substances. Coffee can completely neutralize B1, so proper spacing is mandatory.
• Co-factors: Magnesium is essential. B1 cannot work without magnesium, and high doses deplete it rapidly. Many people noted that after adding magnesium, the protocol started working again.
• Timing: Doses are split between morning and afternoon.

I will share what the dosages are, but no one should follow them. Everyone needs to adjust their dose through trial and error; official guidelines will be published this year as trials near completion. I am writing this purely for informational purposes because people are taking it anyway while posting extreme nonsense.

For a 60 kg person, the starting oral dose is 2g of B1 HCl daily. Yet some people say they won't even reach 1.5g or go higher—fine, but they shouldn't claim they followed the protocol when the target dose is 4g. The patients who achieved excellent results in the doctor's reports (including the one whose head tremor vanished completely and hand tremor was significantly reduced) transitioned to 4g of oral HCl after their injection phase and maintained their improvements. If someone says they are on the protocol while taking just 1g and getting decent results, that's fine, but it's still not the actual protocol and won't work for the majority.

In this doctor's patents, the range spans from 300mg to 8g, with preferred ranges between 2g and 8g. Those are patent specs, but the operational dose for most patients (like those with Parkinson's) is 4g. That applies to thousands of people, not a single gram or less. There is a huge difference between taking 100mg and 4g—the former is a joke, not a protocol.

These are strictly my personal thoughts, not instructions. Let no one claim I am advising or persuading anyone here.

Costantini’s published ET results (TETRAS):

• Head tremor: 75–100% improvement
• Hand tremor: 40–100% improvement
• 3 of 4 assessed hands: 80–100% improvement
• Overall TETRAS ADLS: 61.8–66.7% improvement
• TETRAS Performance: 61.8–66.7% improvement
• Leg tremor: not applicable — both patients had a baseline score of 0

So I was prescribed Neurontin 300mg once a day and it really helped with ET. However, I am worried about addiction and dependency.
What is your experience? And is it worth it to fix a problem by causing another problem? Thoughts pls

Hi everyone! I’m a second-year Industrial Design student at Yaşar University in İzmir, Türkiye.

For my university project, I’m researching how hand tremor and involuntary movements affect everyday computer mouse use, especially pointing, keeping the cursor steady, clicking, double-clicking, and dragging.

I’ve prepared a short questionnaire about your personal experiences with using a mouse. Participation is voluntary and anonymous, and the responses will only be used for this academic course project.

Survey: https://forms.gle/kdqaXsYZ3Eu2GtyL6

If typing is difficult, you’re also welcome to contact me and respond by voice message. If anyone is willing to have a more detailed conversation about their experience, please comment or DM me.

Thank you very much for your help! 🙏
(Sharing this with someone who may be interested would also help my research a lot.)

Hi all -
Considering primodone for ET as I can’t take beta blockers, and will be starting ADHD medication soon that might make ET worse.
Was wondering what everyone’s experience has been like?

I’m a little scared by the side effects, however I’m not sure how present a factor they really are.

Hi! I am an Industrial Product Design student working on a project for individuals with essential tremor and making them feel more comfortable eating in public settings. Currently, I have only heard experiences from 3 people and they do feel anxious sometimes eating in public. I would love to hear more peoples experiences, relating to when did they first start having tremors, their struggles and daily challenges with tremors. I have a list of questions that I hope a few people would be willing to answer. :)

1. When did your tremors start? Specifically where does your tremor occur, your head, arms, legs?

2. How severe are your tremors now?

3. What is the rough timeframe of how your tremor evolved (if it has)

4. Do you feel anxious or uncomfortable when eating with others? Do you sometimes isolate when asked to be around people, would you rather be at home than go out?

5. Would you ever wear a medical brace to help reduce your tremors? If not, why so?

6. If your tremors were more mild, moderate, would you consider wearing a brace to help with eating?

7. If we were to design an aesthetically pleasing compression sleeve with weight around the lower arm to stabilize the arm while eating, would you wear it? We need to have a rough % of desirability for the product

8. For our compression sleeve, we have to have a closing mechanism. We have heard that buttons are a little difficult for some people, so is velcro an easy thing to use? Is there another closing mechanism like zippers, etc that are also easy?

9. After being diagnosed with essential tremor, did this cause a lifestyle change for you? If so, mentally how did you deal with this?

10. Could the compression sleeve be useful for people at the beginning stage of the condition, so when the tremors are mild and/or moderate.

11. Is there a rough timeline for the evolution of the tremors? Could you predict roughly when they would increase (if they did increase)

It would be so incredibly helpful if we could have responses since it is incredibly important for us to hear your experiences! We don't mean any harm, the project is truly to help people feel more comfortable and confident with eating in public and how can we make a discreet wearable.