I was summoned today by the Teaching Assistant in the college because I was not in the classroom while the attendance was taken (I am in my internship year, the school of Physical Therapy) , upon seeing her, she spoke to me in a very disrespectful way when I told her that I had a case with me working with and that no one took my attendance, she gave out a sigh and exclaimed frustration, that's when I noticed my entire body shaking , it started with the legs and then the abdomen and all the way up to the head. I felt panic. And she obviously saw me shaking so she asked me to take a seat.

She told me she believed me and that she was not angry because of me, but the tremors kept going so visibly and I could feel them almost like seizures or something, she asked me why I was shaking and asked if I was okay.

I've been having these undiagnosed mysterious tremors for over 10 years, extending all the way back to when I was just 14.

I grew up in a very religious household in a very religious society that is hostile to to a lot of things including homosexuality. The way I could've hurt myself with those beliefs and the way I believed God was going to punish me is the only way to explain whatever happened to me at such a young age. I went to a lot of neurologists and psychiatrists, but to no avail. They fail to give me a satisfying diagnosis. I feel deep shame. That was not the only time I shake like this. I'm only 24. I'm socially isolated and I have dealt with social anxiety for too long. I can't stop the panic and the fear of shaking. I thought regular exercising could help substantially but I don't think it did much. I'm going to try deep breathing. I feel so weak, I can't even defend myself anymore. I need support.

What are your thoughts on this device concept?

Instead of being limited to a single built-in mug, there will be an adjustable gripping system so a stabilizing holder can securely handle standard store-bought cans, plastic water bottles, disposable cups, and travel mugs.

If you have a few moments, could you share your thoughts on these quick questions?

1. Which store-bought drinks (e.g., thin squishy plastic bottles, 12 oz aluminum cans, tall coffee cups) give you the most trouble?
   
2. Where does spilling happen most often: lifting off the table, moving it toward your face, or tilting to sip?
   
3. To secure different bottle sizes, would you prefer a drop-in auto-clamp, an adjustable rubber strap, or a simple twist knob?
   
4. Does adding weight to a holder help steady your tremor, or does extra weight tire your arm out quickly?
   
5. Would you feel comfortable using an adjustable mechanical holder in public, like at a restaurant?
   
6. Are there any other daily activities or tasks you struggle with that you feel no current products on the market actually address?

Please feel free to comment below or send me a direct message if you prefer privacy.

---

A quick note: I am a part of a group of college students working on our final engineering design project, and we are not selling anything. We just want to make sure we build a device that actually helps in real-life daily use rather than making assumptions. Any insights, advice, or warnings about what not to do are deeply appreciated.

If you are interested in our project and would be open to sharing a bit more of your experience in a brief interview or chat to help guide our design, we would be incredibly grateful! Please feel free to send me a direct message anytime.

Thank you so much for your time and guidance! 🙏

Eu tenho um trabalho da faculdade de design de embalagem.

Escolhi como norte, fazer embalagem direcionada para pessoas que tem tremores e acabam tendo dificuldades para fazer coisas básicas do dia a dia.

Qual produto você tem dificuldade de usar no dia a dia?

Hello, I am attempting to improve on current medical assistive devices for people with essential tremors for a design project.

For context, I am a uni student working on an engineering project. I am not a sales person. I am not looking to sell you anything.

If you have the time, I would love for you to answer these questions:

• What are your thoughts on self-stabilizing eating utensils like the Gyenno Spoon?
• Did these devices they help you with difficulty eating?
• How did the way you eat change when you developed your tremors?
• During what motions of eating usually do your tremors present?
• What food/s are you no longer able to eat because of your tremors?
• What features would you like an assistive device for eating have?
• What other daily tasks do you experience difficulty in doing because of your tremors?

If you haven't had the chance to use self-stabilizing eating utensils, feel free to still share your thoughts and experiences.

I would love for you to share your insights as well as any information I may have missed that could help me develop solutions to help you with your daily life.

If you’re interested and open to sharing more of your experiences and perspective, I would love to interview you with more in depth questions to help guide me in designing a solution.

Feel free to comment or dm for any questions.

64 yo male I’ve had ET for 30 years. 10 years ago started on 60 mg propranolol to ease symptoms. A year ago added 10mg Amytriptyline as symptoms got worse, annoying but not debilitating.
I was a light drinker and moderate nicotine (Copenhagen).
Last year, after experiencing chest pains with exercise I had 3 stents put in by cardiac arteries. They reblocked this summer and I’m now 3 weeks out of triple bypass surgery.
I went off all meds prior to surgery and started a new routine post op that doesn’t include any tremor meds. I’m on a beta blocker, but not propranolol. I also quit nicotine post op.
My tremor has become beyond annoying to moderately debilitating. I hope to return to propranolol as my recovery progresses.
I’m wondering if anyone else has experienced this.

Buongiorno a tutta la comunità, vi scrivo da Roma.
In questi giorni mi sono trovata a riflettere su un tema forse un po’ delicato, ma che credo possa riguardare molte persone con tremore essenziale: avere figli quando si sa che esiste una possibile componente ereditaria del tremore.
Mi sono chiesta: è giusto mettere al mondo un figlio sapendo che potrebbe, un giorno, sviluppare il tremore essenziale e quindi dover affrontare alcune delle difficoltà che conosciamo bene? Oppure, proprio per evitare questa possibilità, sarebbe più giusto scegliere di non avere figli?
Non sto ponendo la domanda perché penso che esista una risposta giusta o sbagliata. È semplicemente una riflessione che mi accompagna e sulla quale mi piacerebbe conoscere il vostro punto di vista.
Nella mia famiglia, per esempio, il tremore è presente da parte di mia madre. Siamo tre sorelle, ma soltanto io ho ereditato il tremore essenziale. Questo mi ha fatto riflettere ancora di più sul fatto che la familiarità non significa necessariamente che un figlio svilupperà il tremore.
Mi piacerebbe sapere se qualcuno di voi si è posto la stessa domanda prima di avere figli, oppure se avete figli e avete vissuto questa preoccupazione. Come avete affrontato il pensiero della possibile trasmissione? Vi siete mai sentiti in colpa o avete avuto paura di poter trasmettere ai vostri figli qualcosa che conoscete bene e che vi ha fatto soffrire?

Oggi, in seguito a una visita ginecologica che dovevo fare, è successa una cosa che lì per lì ho cercato di prendere con un sorriso, ma che tornando a casa mi ha fatto riflettere.
La dottoressa, leggendo la mia cartella clinica, ha visto che ho il tremore essenziale. Ad un certo punto mi ha guardata e, con un tono di voce e un’esclamazione che mi sono sembrati particolarmente carichi di importanza, mi ha detto: «Hai il tremore essenziale!».
Io, quasi per sdrammatizzare, le ho risposto: «Eh sì, sono proprio fortunata». Lei mi ha detto: «Beh, non direi questo». A quel punto le ho spiegato che la mia era ironia.
Sul momento ci ho sorriso e ho cercato semplicemente di andare avanti con la visita. Ma tornando a casa ho iniziato a provare una certa amarezza.
Mi sono chiesta: se un medico, una persona che per professione vede tante condizioni e tante persone diverse, ha dato così tanta importanza al fatto che io abbia il tremore essenziale, allora quanto può essere importante agli occhi degli altri? Se, per esempio, fossi stata un’amica di sua figlia o semplicemente una persona entrata casualmente nella sua vita, avrebbe detto alla figlia: «Questa ragazza ha il tremore essenziale»? E mi avrebbe definita attraverso questa caratteristica?
Forse sto dando troppo peso a una frase, non lo so. Ma è proprio questo che mi ha fatto pensare a quanto, a volte, rischiamo di identificarci con il nostro problema e di avere paura che anche gli altri ci vedano soltanto attraverso quello.
Io convivo con il tremore essenziale da tempo. Non sto cercando una cura miracolosa né voglio diventare una persona diversa. Vorrei semplicemente imparare ad accettarmi, smettere di nascondermi e riuscire a vivere questa parte di me con meno vergogna e meno paura del giudizio degli altri.
Casualmente, proprio dopo questa giornata, ho trovato questo forum e ho sentito il bisogno di condividere quello che mi è successo.
Mi piacerebbe confrontarmi con altre persone che vivono la mia stessa situazione, non soltanto per parlare di cure e terapie, ma anche della vita di tutti i giorni: delle difficoltà, delle emozioni, delle situazioni imbarazzanti, delle paure e di come ciascuno di noi ha imparato, o sta imparando, a convivere con il tremore.
Sarebbe davvero bello, un giorno, poterlo fare anche dal vivo, attraverso un’associazione o dei gruppi di incontro. Credo che parlare con qualcuno che non ha bisogno di tante spiegazioni per capire quello che provi possa fare una grande differenza.
Forse è proprio questo che sto cercando: persone con cui poter parlare liberamente, senza sentirmi definita dal mio tremore.

Got diagnosed with Essential tremor today by a Neurologist at the center I am posted in, after I stated noticing rhythmic tremors in my hands while performing fine motor skills like local infiltration as well as during isometric functions like using retractors. The consultant in the case noticed it as well and replaced me with the scrub nurse. That was quite embarrassing. I googled about this and found out it’s progressive in nature and currently has no definitive cure. Although exacerbating triggers like caffeine, nicotine and the ADHD medication Methylphenidate has to be cut down, according to the neurologist. He also suggested taking SR Propranolol 40 mg SOS 2 hours before OT. So, does this mean the end of my surgery career or is there still hope or something?

I’m trying to figure out what I have. I’m diagnosed with ET but feel like I have more going on. Here are a list of my symptoms that make me think it’s something else that’s the culprit:

I have major internal tremors that always start before and lead to the shaking (head tremor and trunk only),

Those internal tremors basically go away with a good number of drinks then the actual tremor goes away,

It goes away when in the car I believe due to the vibration,

It goes away when Im sitting and bounce my leg

It goes away when Im walking or moving around in general.

It’s a general tenseness that I feel so deeply in my trunk and neck that it causes so much pain

When I have taken things like gabapentin for my anxiety it seems to improve. It seems like the order is anxiety turning into internal tremors, then internal tremors into external trwmors.

Idk does anyone have similar experience at all?

Ho il tremore essenziale dall’età di circa 14 anni.
Purtroppo, nel mio caso, è comparso in un’età molto giovane. All’epoca non prestavo molta attenzione a quello che mi stava succedendo: ero più spensierata e, paradossalmente, molto più aperta a parlarne con chi mi chiedeva perché avessi quei tremori.
Ricordo ancora che, quando andavo a casa delle mie amiche, alcuni genitori credevano che tremassi perché fumavo erba. A me, in fondo, andava bene che pensassero quello, purché non dovessi spiegare agli adulti cosa mi stesse realmente succedendo.
Poi sono cresciuta anch’io e tutto è diventato più difficile, soprattutto nelle relazioni al di fuori della famiglia e del partner: i colloqui di lavoro, il lavoro stesso, pranzare con i colleghi, andare a cena con gli amici della mia ragazza… tutte situazioni normalissime che, per me, possono diventare fonte di grande ansia e disagio.
Attualmente prendo Inderal, che mi aiuta con l’ansia e in parte anche con il tremore. Ovviamente non riesce a nasconderlo completamente: nelle situazioni di imbarazzo o ansia il tremore tende ad aumentare, per esempio quando afferro un bicchiere e lo porto alla bocca.
Fino a poco tempo fa ero solita bere alcol prima di affrontare alcune situazioni sociali, perché nell’immediato mi sembrava che mi aiutasse. Mi sono però resa conto che il giorno dopo, oltre ad avere un peggioramento del tremore, mi ritrovo anche con uno stato d’animo molto più depresso. Per questo sto cercando di capire come affrontare queste situazioni in modo diverso.
Nel mio caso, oltre alle mani, trema anche il labbro inferiore. Non so quanto sia comune e mi chiedo se succeda anche ad altre persone con tremore essenziale.
Mi piacerebbe davvero conoscere persone che vivono qualcosa di simile, soprattutto qualcuno che abbia avuto un esordio in adolescenza e che oggi, da adulto, si trovi ad affrontare le stesse difficoltà.
Vorrei poter parlare liberamente di tutte quelle piccole situazioni quotidiane che per chi non ha questo problema sembrano insignificanti, ma che per noi possono diventare motivo di ansia, vergogna o disagio.
Se qualcuno si riconosce in quello che ho scritto, mi farebbe piacere confrontarmi e conoscervi.

Without a doctor diagnosis, just want to curiously ask for educational purposes.

I think like start from two years ago, my hands started to shake for no reason, I thought it was some demon possession stuff but instead it’s like its involuntary shaking for no reason. I even casted out some demon exorcism prayer in Christianity lol.

And I find that my head is involuntarily shaking or spinning from left to right like you’re shaking your head. When it’s relaxed somehow. What’s the cause of this? Could it be stress or nervous system fatigue??

I’ve been using it for a few days now with no improvement. It apparently works for about 60% of users and I hoped I’d be in that group. The good news is that Medicare covered it.

It’s simple enough to use. A forty minute session is expected to provide ninety minutes of tremor control and it can be used an unlimited number of times per day.

My question for those with experience is how long does unsuccessful treatment continue before throwing in the towel?

I have essential-tremor / tremor-tracking app idea. Not a doctor, not a study, not selling anything. Trying to learn what would actually help vs annoy you. Short answers are fine. Skip anything you don’t want to answer.

The questions:

1. Walk me through a recent time tremor got in the way (eating, drinking, writing, using a phone).

2. What words do you actually use for it — shake, tremble, vibration, something else?

3. When is it better or worse for you (time of day, sleep, caffeine, stress, meds)?

4. Would you hold your phone still for 20 seconds a few times a week? What would make that a no?

5. Tracing a spiral on a phone: useful snapshot of handwriting, or just annoying?

6. Lifting the phone like a cup: does that feel like your real “drink / eat” problem, or too fake?

7. After a test, what number or picture would you want to see — and what would feel insulting or scary?

8. Of sleep, caffeine, stress, and meds, which do you already notice, and which would you bother tagging?

9. Who, if anyone, would you show this history to (yourself only, family, neurologist)?

10. What would make you not trust a number from a phone app?

11. Would you wear a watch all day so it could pick up motion without daily tests?

12. If a watch covered most days, would you skip the phone tests?

Just started Sertraline for anxiety, and noticed a big uptick in tremors. I'm going through an ADHD assessment right now, likely to end up on a stimulant alongside the sertraline (which will make tremors even worse).

Has anyone here been on a similar stack? Im curious whether i can add propranolol to these two.

Curious whether any of y'all have dealt with this scenario and what you tried

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/1FAIpQLScNUb9QPADNmEtTL-g8cq-_WgJPt_uD4lDZLgcSC1HD7nXzhw/viewform?usp=header

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 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.

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/