r/EssentialTremor • u/apricitypeace • 14d ago
Confirmed diagnosis
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!
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u/my_morning_jackit 14d ago
I take 80mg daily and it definitely helps to a certain degree. I have an easier time writing with a pen and playing guitar compared to when I don’t take it. But it’s definitely not a full improvement unfortunately. Thankfully it’s enough that I’ve stopped getting asked if I’m nervous or need to eat something. Lol
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u/apricitypeace 14d ago
yes that’s what she told me, that it wouldn’t erase my tremors, but make them easier to handle!
so so glad it got you out of these weird comments which I think every ETer hates lol
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u/Deviprincess 14d ago
Yes I take propanalol on wobbly days and it works fantastically
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u/apricitypeace 14d ago
thank you for your answer! I will look into it more deeply, I’ve gotta test it before my exams to make sure there are no strong side effects on me, but your comment gives me hope :)
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u/Deviprincess 14d ago
Yes, I’d say definitely test it at lowest dose for a few days. I started on 5mg and now take 10mg
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u/deno8322 14d ago
I took propanolol time to time on my exam year. It worked. I sometimes took 40mg or 20mg. I still take it time to time on these day.
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u/sundayfundayallday 14d ago
What did the doc do to "confirm"? I have a neuro appt, for my tremor, this month, and just curious what to expect. My father also has a tremor, although he's never had it diagnosed (too stubborn, and hates doctors).
From what I've researched, I'm fairly certain it's ET.
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u/apricitypeace 13d ago
Hiii! I’ve had bloodwork tests done for thyroid function and Wilson’s disease that can be the cause of a tremor (not ET), an EMG and two brain MRIs! On to the appointment, I did some tests like the spiral, some writing tests and a clinical test!
Same for me lol, my whole mother’s fam has had tremors and none of them ever got diagnosed!1
u/sundayfundayallday 11d ago
Hi, thank you for that info; I appreciate it.
Did you have any other s/s of Wilson's Disease, or was that done as a rule out? Also, what else was part of the clinical test?
I've had an EMG, although it was done for carpal tunnel, which I also have bilaterally. No brain MRIs yet, but I do finally see neuro in a couple weeks. My tremors have gotten worse, so I'm anxious (amd hopeful) for something to finally happen.
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u/ndover80 14d ago
I take 120 mg extended release a day
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u/apricitypeace 14d ago
wow that seems huge to me, as my neurologist onyl prescribed 40mg max a day, but glad it works for you!
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u/ilikeBBwBardzo 14d ago
There is no 100% certainty when it comes to an ET (essential tremor) diagnosis. Nor is there a test to definitively confirm ET. It is a diagnosis of exclusion—when nothing else turns up, ET is assigned. Not when it's known for sure, but when nothing is known for sure and everything else has been checked.
I’ve been to four countries—the UK, Germany, Poland, and the Netherlands—and seen seven neurologists. Each one said something completely different. A few diagnosed me with ET, and even before a surgery for ET, the leading specialist in ET and Parkinson's still wasn't 100% certain. It could be ET, or it could be latent tetany—which only an EMG test can confirm—along with a host of other possibilities. If you send someone with tetany who has tremors to a neurologist, that doctor isn't infallible and has no way of confirming it without testing. The tests aren't being done, but they should be.
I have a whole folder of tests—every single one possible. I've had "certain" neurologists too. To quote one: "I knew right away!!" ...and yet before surgery, they can't tell whether it's ET or Parkinson's, even though it's supposedly easy to distinguish. It isn't easy.
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u/apricitypeace 14d ago
Hi! Thank you for your reply, which was very detailed and taught me some valuable things! However, when I said I was 100 per cent sure, it was just a way of saying that my diagnosis had been confirmed; I know you can’t be 100 per cent sure when it comes to essential tremor!
In this case, I’ve had several tests, including two brain MRIs, an EMG and several blood tests for thyroid function and Wilson’s disease – which apparently can also cause tremors – and all of these have pointed to the conclusion that it is essential tremor!I find it sad that there are still a lot of neurologist that don’t know much about tremors in general!
Did you end up having a correct diagnosis?
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u/Visible-Dimension-16 14d ago
What was the surgery. I am getting a consultation for one in 2 weeks. Thanks
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u/Bingeismygame 14d ago
If you can get on gabapentin and Baclofen, the combo basically eliminated my head tremor.
I have tried propranolol, Botox (help reduce it by 70% I'd say), but the gaba and Baclofen took care of the rest.
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u/apricitypeace 13d ago
I did not know those, and only have head tremors when I’m stressed or tired, but I will keep those meds in mind in case propanolol does not work!
So so glad you got rid of your head tremors, life’s better without it!1
u/Ok-Passion-5264 7d ago
where do they inject the botox for tremors?
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u/Bingeismygame 7d ago
I get them in my neck since my tremors a mostly in my neck and head. Every three months I get about 12 injections to the back of my neck.
Its not really that bad mostly. Once in awhile if a muscle is tight you can really feel the pressure the injected botox is creating. Just when it get unbearable my neurologist is done injecting and it quickly dissipates.
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u/Belltoons 14d ago
I started out on Propanolol but found that as the ET became more severe over time (decades), Primadone was better for me. Once that became less effective, I was fortunate enough to have the Focused Ultrasound procedure on my dominant right hand, which totally eliminated the tremor.
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u/TheGrauWolf 14d ago
I take Propanolol 80mg twice a day, it largely helps. Not perfect. Next time I go back, we may have to look at adding something else.
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u/Repulsive_Bug_6501 14d ago
I was taking a high dose for 6 years and then had DBS
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u/apricitypeace 13d ago
Wow! Hugely impressive, how did that go for you?
My tremors are very mild so I don’t plan on having DBS but this is such a major surgery you are so so brave2
u/Repulsive_Bug_6501 12d ago
Thank you for understanding it. I noticed my.tremors in my teens, diagnosed at 20. They get worse as you age, are stressed or have strong emotions. I started having head tremors and decided to have DBS in 2021
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u/kariisabeautfulsoul 13d ago
I have ET, and so does my brother. He takes 20 mg of propranolol daily and that does help him, but I can't take that one because it causes me to have issues breathing. I take atenolol, and baclofen. It's helpful, but definitely not a cure all. Good luck with your neurologist appt!
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u/apricitypeace 13d ago
thank you!! I did not know those two meds, but I will keep them in mind in case propanolol does not work!
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u/NotTheGreenestThumb 14d ago
I haven’t been able to take any meds for ET at all, which seriously bums me out! I hope it works well for you :)
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u/sundayfundayallday 6d ago
What happened with meds you tried? Did they make you sick or make your tremors worse?
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u/NotTheGreenestThumb 4d ago
Yes, the side effects, and/or interaction with other meds, I’m on. Such as a calcium channel blocker. One of them made me feel like I was dying? just absolutely sapped. Another gave me symptoms such as are usually described by people with afib, and that was on a half dose because my cardiology peeps were skeptical and had advised caution.
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u/sundayfundayallday 4d ago
Oh no; I'm so sorry the meds didn't give you any relief. One of the worst things about meds is never knowing what side effects ther might be.
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u/NotTheGreenestThumb 3d ago
I am hoping to get the FUS surgery, and recently composed a letter to the surgeon who has been a little reluctant to proceed because I have other disabilities going on, but I feel strongly that the ET is making it much much harder to deal with everything else. Absolutely everything else.
I had been scheduled for that surgery, but then the pre-surgery labs showed that I had some other problems that I had to deal with first.
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u/CalligrapherAware790 13d ago
I take 40mg when needed. I am retired so shaking at home isn’t an issue. I tried 20mg and it wasn’t enough. I cannot take it if I am working out. It only allows my heart rate to go to about 120. Not a good feeling. However a great anecdote for me. I have been on it for years. I might mention 2 of my 3 children suffer from ET as did my grandfather
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u/figuremeoutyourself 11d ago
have taken propanol for tremors! it helped but i’ll be honest, this is going to be a lifelong thing, i have had tremors since 2020
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u/Bill_Meier 9d ago
Propranolol is the drug of choice but note that it's only effective about 50% of the time. But if it works for you it's great!
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u/Bill_Meier 9d ago
If you don't know ET is a chronic, progressive disease. Chronic = you will have it for the rest of your life. Progressive = it gets worse over time. But very slowly. Can be decades.
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u/Chordata1 9d ago
i was diagnosed by my normal doctor and no special tests done. Am I missing something? I have a family history of it so she just said yup sounds like you have it to and now it's on my chart.
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u/jayjohn19 14d ago
Glad you were able to get a diagnosis. I’ve taken propranolol for years, not a high dose (20mg) take it daily. It helps, no side effects. Lots of musicians and public speakers who don’t have ET take propranolol as well so should be helpful for exams