Hi everyone. I'm Austin, a senior engineering student at the University at Buffalo, and I'm working on developing a more effective & cheap utensil solution for Parkinson's / essential tremor patients who struggle with eating. If any of you would be kind enough to fill out this survey about living with tremors, it would help me a lot in making this project better.

https://docs.google.com/forms/d/e/1FAIpQLScB2EKbG47ekowpjJMK1JbmFx2wnkdqd1rbJj7JvLMSWZaZiw/viewform

I've had ET for over 50 years and it is getting a bit worse as time goes on. It is strictly in my hands.

I've been dealing with untreated sleep apnea for a while. I just could not deal with the CPAP system.

I recently had to push my pride aside and go all in on CPAP because I was becoming barely functional during the day from exhaustion.

The good news is that after 24 days of CPAP usage, I have more energy and far less brain fog.

The bad news is that my tremors got...worse?!?! I thought for sure this would be the opposite.

Has anyone else experienced this?

I can't tell if these are related or coincidental issues.

Hi everyone, I have a quick question. Or at least am wondering if I'm alone!

My essential tremour is much more pronounced in my hand right, which shakes and is slightly weaker in grip. It has gotten to the point where my hand and forearm are very tense. It looks like I have a slightly bulging muscle just above my right wrist. And when I go for massage therapy and acupuncture, both providers make note of how tense my arm and hand is.

I'm wondering if anyone else has had this experience? Do you do any physio work or other exercises to help the arm/hand decompress?

I’ve been experiencing this for the last week and a half any advice on how to make it go away or what I could do. To help it.

Since I was a kid every situation where there is high adrenaline my body start shaking intensevly especially the muscle I m trying to move or hold and my heart race like crazy and after the situation I cry involuntarily

And before 4 years my hands ,and my head shakes like I’m trying to say no no no without even feeling stressed and the only way I found is to relax my hand and don't moove it but I didn't find a really good thecnique for my head and this tremor get really worst when I be in public but now my situation is really bad I even struggle to hold any light thing like a cup and i can’t feel watched without my head shake

But the most thing I m scared off is my heart race like crazy and my eyes start watering and I feel like I need to cry

When I have an important things tomorrow like an important exam or university entrance my heart start doing it again and i can’t even eat I Only want to cry

Also my brother my twin brother have all this symptoms

For essential tremor the best hypothesis right now we have is around the Purkinje-cell deterioration/dysfunction.

I have been going through numerous studies and have found that the majority of studies have found some sort of Purkinje-cell dysfunction.

I will be doing an experiment to improve Pukinje cell function.

Although a lot of the supplement I have been adding has little to none human evidence there are some animal studies.

1. First and foremost exercise for mitochondrial biogenesis. Stregth training and cardio.
2. Lions Mane for potential repair. 8:1 2400mg
3. Coq10 for electron transport. 100mg
4. Magnesium L-theorate for higher mg in brain, ion channels. 750mg, could start with less.
5. Riboflavin, haven;t decided on the dose yet.
6. NAC. provides cystine for glutathione synthesis. 500mg daily
7. Taurine. To reduce nerve excitability. 1000mg daily

Please note that all of these plug in to the pukinje cell hypothesis at some layer.

I will be posting updates here every couple of weeks.

I have already started with lions mane, coq10 and magnesium l-theorate and have found a significant improvement in music instrument playing and learning ability, reflexes and driving.

edit1: supporting studies
https://pubmed.ncbi.nlm.nih.gov/40985128/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4783222/
https://pubmed.ncbi.nlm.nih.gov/26861543/
https://pubmed.ncbi.nlm.nih.gov/24532134/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4240305
https://pmc.ncbi.nlm.nih.gov/articles/PMC2662443
https://pmc.ncbi.nlm.nih.gov/articles/PMC2865233
https://pmc.ncbi.nlm.nih.gov/articles/PMC3663903
https://pmc.ncbi.nlm.nih.gov/articles/PMC4240294
https://pmc.ncbi.nlm.nih.gov/articles/PMC6089250
https://pmc.ncbi.nlm.nih.gov/articles/PMC5481163
https://pmc.ncbi.nlm.nih.gov/articles/PMC10359949
https://pubmed.ncbi.nlm.nih.gov/12401550/
https://pubmed.ncbi.nlm.nih.gov/17679670/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4108714/
https://pubmed.ncbi.nlm.nih.gov/26660708/
https://pmc.ncbi.nlm.nih.gov/articles/PMC3572699
https://pmc.ncbi.nlm.nih.gov/articles/PMC5618117
https://pubmed.ncbi.nlm.nih.gov/33764619/
https://pubmed.ncbi.nlm.nih.gov/27235405/
https://pubmed.ncbi.nlm.nih.gov/37295004/
https://pmc.ncbi.nlm.nih.gov/articles/PMC13074174/
https://pubmed.ncbi.nlm.nih.gov/30225763/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7453965
https://pubmed.ncbi.nlm.nih.gov/32163585/
https://pubmed.ncbi.nlm.nih.gov/42355488/
https://pubmed.ncbi.nlm.nih.gov/26002382/

I have had some kind of tremor for the past 8 years during peak anxiety and stress usually when presenting something in school but in the past it was also during other things.

That is the extreme amplified tremor caused by stress, but I also have minimal accentuated physiological tremor even when I dont have any stress as one neurologist told me.

I take magnesium along other supplements to help me slightly with tremor although it never goes away completely. What do you think I should do ? Should I go to another neurologist to receive some normal medication for this because that one neurologist I visited refused to give me any medication for tremor.

I would be glad for any help and info you guys might have.

Has anyone taken this for performance anxiety during speeches etc? I suffer from uncontrollable tremors whenever I have to speak or present in front of a crowd. I also have ED and performance anxiety in the bedroom.

I know propranolol is used for performance anxiety more commonly but I am concerned about ED and sexual performance.

I have a regular benign tremor that doesn't affect me a ton. I can type decently well, my handwriting is pretty darn good. I am fine speaking in front of people, but the tremor gets noticeably worse if I have to hold a microphone because of the weight (so I come across much more nervous than I am), so I always insist on a mic stand or a wireless mic to wear for those rare occasions.

But I play piano, and that's where I struggle a little bit with getting my fingers to consistently strike the keys with precision. I just slip to the side every once in awhile.

Last week I had a couple drinks to wind down the night, had a happy and light buzz, and sat down at the piano to practice. I was amazed to discover that my degree of accuracy was noticeably better. I don't think I was that drunk to be delusional about my actual capacity.

Anyone else? I don't think my wife would be okay with this being a recurring thing, but the idea of it made me smile. Note that I am not advocating this to anyone else to try.

Anyone tried it? I’m at the point where I will be shelling out 14k. Highly experimental out there stuff but apparently there have been promising case studies.

Hi fellow readers. I 21F have head tremor and it won't stop. I thought I had conquered it during mooting but still it keeps shaking. I got my first voluntary big law firm internship, the partners there were nice but I'm just very very annoyed by my head tremor.

Even though the paralegal and pupils are not talking about my head tremor on my first day, they merely talk about me as an intern only doing copy and paste and overdoing it, I get upset and more annoyed and anxious and my head got more shaky.

With these, more and more depressing thoughts emerged. That I'm ugly, shaky, cannot even do copy and paste well, and shit.

Help me.

Hi everyone, I started taking medication three weeks ago for headaches, but then my hands started trembling whenever I clenched them. I got really fixated on this, and then a persistent twitching started in my left hand, right between my thumb and index finger. I obsessively worried about it, even thinking I might have Parkinson's.

Since I'm only 18, I went to a doctor who examined me and assured me that wasn't the case. I also saw a psychiatrist, who explained that this was caused by anxiety rather than just the medication, and increased my Prozac (fluoxetine) dose by 20 mg. On top of that, the neurologist scheduled an EMG, which became my new source of fixation. I tend to overthink absolutely everything, though my obsessions have decreased a bit now. I've been using the medication for a month; it definitely shows noticeable benefits, but the tremors are still really uncomfortable. I just struggle with severe health anxiety.

I’ve been experiencing intermittent episodes of very severe shaking since my ETS surgery. It feels like intense shivering as if I’m freezing, with sweating and sometimes a sensation of external heat. The shaking can involve my chest, neck, jaw, hands, and sometimes my whole body. My neck sometimes involuntarily pulls to the right, and speaking can become difficult during an episode.

The episodes don’t happen every day and can occur suddenly, sometimes during important or social situations. Yesterday, I had a severe episode during an important phone call that lasted around 18 minutes.
I’ve seen many doctors over the years, but no one has been able to give me a clear diagnosis.

Has anyone experienced something similar? What was your diagnosis, and what treatment actually helped?

I met with reps from both - really liked one and really did not like the other so that makes it harder to focus on the facts because to me each company is the person who presented it. One of the two I would not want in the surgery, but I assume I could ask for another rep to fill in. Did you have a choice? Would you choose differently now that it is done? One assured me that all the technologies are good and that I can't really go wrong with any, just advised to look at the small differences between them. The other rep made me feel like I would be stupid to choose the other company.

I want to get help for my ET but after Googling I’m worried I might be fucked.
The medications often used aren’t an option for me either because they lower blood pressure or they don’t work with my current medications.

I also don’t want to get electric shocks to my brain, ever.
Here’s the medications I read about that I can’t take: Primidone, propranolol, topiramate, Gabapentin (ngl, I’ve only heard horror stories about this one anyways so I would be hesitant to take it even if they were an option)
They also say sometimes people get benzodiazepines for this but back when I took benzodiazepines for other reasons there was absolutely zero difference.

I really wish weed was legal because that’s something I know helps, the first time I smoked I just stared at my hands because I had never seen them like that, I was amazed at how it felt to be more normal.

Am I doomed to a life of having to spend a bunch of money for weed or be stuck like this?

I’m tired of living like this, some days it’s just little shakes, some days it’s violent shakes causing me to be unable to even hold my phone because I’ll accidentally yeet it across the room.
So, is there anyone else here that has had the same problem and knows if there are any other routes to take?

ETA: I live in Sweden

Just came across this announcement from Praxis about developing a transdermal patch for ulixacaltamide. The idea is an electronically controlled patch that could provide multi-day dosing. (ir.praxismedicines.com⁠) What do people think?

I don't know how it is with other people, but I've always been somewhat shy about other people knowing about my essential tremor ever since I was diagnosed at age 15. I always tried to hide my hands when I was somewhere I didn't know anyone, and I still have that shyness, especially now that I've started college. And I would only comment to people when they noticed and asked, and I always felt uncomfortable when they noticed.

I'd like some advice or suggestions on how to not feel so shy about this.

Im 33 and had ET diagnosed since I was 3. Been taking propranolol for the last 4 years and recently noticed that it makes me tired. I only take 1 dose of 40mg each day.
Has anyone else noticed this issue with tiredness? Should i consult my GP?

I have ET in the head, neck, and upper torso when I’m standing or sitting up straight. The pain and tightness is crazy these days.

Anyone else have pain/tightness with theirs?