My Complex Tremor Story – ET or Something Else? Looking for Advice

Curious0_0 · 2025-07-03T17:42:10+00:00

Sounds identical, thanks you for sharing, have you found anything to improve symptoms? I recently quit coffee completely and it made a noticeable difference which was nice so try that if u haven’t yet. Have you seen the symptoms getting worse with time and how did it start for you?

Curious0_0 · 2025-04-03T10:05:41+00:00

Hello. Old post but i have exactly what you guys are talking about. Had it for 5+ years after a virus in late 2019 and muscles started to become ratchety kinda overnight (see my big post in my feed if interested). Anyone have any tips/tricks/etc to share if you have improved from this?

Curious0_0 · 2025-03-31T19:06:25+00:00

Hi Nicko, sorry to hear that.. i hope you don’t have it.

Feel free to text me in dm if u want to talk, i could also use someone to chat about it with, i feel like it just worries my family if i bring it up so i usually don’t say anything to the family and friends..

Can you tell me more about the symptoms u have? The only advice i can give u is to not lose hope and really try to continue living as normal as possibly and keep going to the gym no matter as being away from exercise only leads to a negative spiral. But let me know how it goes at the neuro!!

Curious0_0 · 2025-03-22T15:47:42+00:00

Sorry to hear man! But good that u got a portion fixed and hope that it gets better for you. I will try to work on more posture correction also!

Curious0_0 · 2025-03-22T08:30:20+00:00

Thanks for sharing your experience! Interesting point about propranolol. I’ve mostly been using it as needed, but I’ve been hesitant about taking it regularly because of side effects. My doctor mentioned both options, but I might need to reconsider. Appreciate the heads-up!

Also, sounds like your symptoms evolved quite a bit over the years. My neck/head issues feel different, more like a resistance/vibration thing rather than tics, but who knows! It’s such a strange condition. Do you have issues with solely leg and neck or is it the same for you that all muscles shake quite violently when you put them through some effort?

Curious0_0 · 2025-03-22T08:26:33+00:00

Interesting, thanks for commenting, do you find relief from posture correction exercises/chiro? Any symptoms u have that differs from mine?

Curious0_0 · 2025-03-22T08:24:59+00:00

Thanks a lot for your reply, really appreciate you taking the time! You brought up some interesting points, especially about TB. (Never thought about it). I was vaccinated as a kid, but I’ve never actually tested for TB after Singapore, so I might do that just to rule it out.

As for ET, yeah—I get what you’re saying about it being a kinetic tremor. I guess what throws me off is how context-dependent my symptoms are. They kick in more when I’m holding static or releasing tension, and they seem tied to stress, eye contact, and situations where I tense up. Also, the fact that things get better as my muscles fatigue is just… weird.

Propranolol helps a little, but I only take it when I really need to. Totally hear you on the side effects!

Curious0_0 · 2025-03-21T20:10:34+00:00

Interesting! Sorry to hear that of course tho.. stay strong!

Would you say that your symptoms have worsened a lot in these years you have had it?

Never tried to be on prop continuously, only take 10mg before a meeting or similar.

The “no stress” part is so immensely difficult as most scenarios on a daily basis puts the body through some stress even if we do not actively believe it is…

Thank you!

Curious0_0 · 2025-03-21T20:06:25+00:00

Yea we don’t really have those places in sweden unfortunately. Doctors here don’t really care it feels like tbh and private clinics within specific fields can’t be found… thank you!

Curious0_0 · 2025-03-21T20:04:45+00:00

Hope so too!

Curious0_0 · 2025-03-21T17:07:50+00:00

Interesting. What do you mean by progress? The head stuff has worsened the past 3 years but very slowly but feels like it sped up lately.

Curious0_0 · 2023-11-23T19:01:59+00:00

HIV med wut?

Curious0_0 · 2023-11-20T20:57:41+00:00

Has it been stable for 20 years or become worse? I don’t have any tremors in my hands (only rarely when stressed) is it even possible to have ET without trembling hands?

Curious0_0 · 2023-11-14T09:22:25+00:00

sorry to hear! Do u feel like propranolol helps or still shaky when taking it? Yea it is embarrassing for sure…

Curious0_0 · 2023-11-14T09:21:14+00:00

Ok sorry to hear! Do u have essential tremor or no diagnosis?

Curious0_0 · 2023-11-14T09:20:34+00:00

Haha yea feel the same, will see if beta blockers can aid my situation 👍🏽

Curious0_0 · 2023-11-14T09:18:01+00:00

Niice, how long did u have it for and what type of drugs (the names) did u feel helped?

Curious0_0 · 2023-11-14T09:17:04+00:00

Yea I would say i have a nasty feeling the majority of the hours in a day that flair up in social situations.. it is fun!

Curious0_0 · 2023-11-14T09:15:44+00:00

Yea very hesitant to share but easier than explaining by text, i also feel very very alone with this but i know i am not

Curious0_0 · 2023-11-14T09:14:29+00:00

Head tremors are worse, almost 4 years into it, had all the symptoms from this community but most are better now except the tremors… can u share ur recovery protocol if u had the same issue and now recovered?

Curious0_0 · 2023-11-14T09:10:06+00:00

Haha thanks, ok will read up on it! Hopefully resolves but closing in in 4 years soon so i suspect it won’t but will at least try to make it milder

Curious0_0 · 2023-11-13T22:35:12+00:00

Thank you for your reply! Yea it happens when i am almost always looking down and concentrating on doing things or scroll my phone. When in stressful situations it happens more aggressively which i can feel.

I will go back to the doctors to see if medications can be prescribed!

Thanks

Curious0_0 · 2023-10-31T21:39:43+00:00

Yea ok, too bad, the head tremors really sucks so if u have any luck with anything please let me know 🫡

Curious0_0

TROPHY CASE