Essential Tremor and High Focused Ultrasound (HIFU)

Posted by rica @rica, Apr 29 3:14pm

At the age of 24 I was diagnosed with essential tremor. Today I am 59 years old. To help decrease tremor, I take primidone, a beta blocker propranolol and alprazolam for anxiety. As I am older, the drugs have had less effect and the tremors have worsened. A new treatment called High Focused Ultrasound (HIFU) arrived here in Brazil, where I live.
The treatment consists of the emission of a focused ultrasound performing a unilateral strategic injury in dysfunctional pathways in certain diseases, in this case Essential Tremor.
Please, has anyone heard about this treatment? If yes, what is your feedback? Thank you.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

kayak461 | @kayak461 | Jun 9 7:51am

In reply to @brian1141 "This is the first I’ve heard of a positive test for PD. What is a Dat..." + (show)

Hello Brian1141. I had a DATScan last month. When you arrive for your DATScan, they give you an injection of Radioactive material, then you wait for three hours. Then they perform the actual DATScan, which is similar to an MRI. That part of the test takes about 30 minutes. It looks at how well your brain is up taking dopamine! I was diagnosed with Essential Tremors for 9 years. This test confirmed I have Parkinson’s!

margm | @margm | Jun 11 2:52pm

I have had what we called familial tremors since 6th grade. Of course, they were not noticed by anyone but me, and if I had to stand up in class, anxiety made it worse. I am now nearing 83. I take propranolol for this, and it is not very helpful, but after this length of time I am as used to it as I can get. I do believe it adds to depression though. I worked 43 years as a transcriptionist and it actually made me type faster, very few mistakes. Now nearing 83, my lower jaw shakes and I wear a mask (like our Covid masks) just hooked to my ears, hoping it won't be as noticeable. None of the new treatments are interested in helping me, which I understand. My dad and his sister had this too, so I was the only gene after them that was affected. Not really looking for help, just misery and company kind of thing. It gets terrible with anxiety.

radioactivems | @radioactivems | Jun 12 4:09pm

In reply to @margm "I have had what we called familial tremors since 6th grade. Of course, they were not..." + (show)

I also have ET and possibly Parkinsons. My sister also has ET. I have good days and bad days.

greenway47 | @greenway47 | Jun 20 5:34pm

I went to a neurologist and was stamped with Essential Tremors. He did blood work and put me on Primidone. To start with they were only in my hands, now with medication it involved my head bobbing once in a while.

Can anyone give me some information or relates to this?

stevelinda | @stevelinda | Jun 21 8:33am

In reply to @rica "Good afternoon Joe. Your information was very helpful. I'm still considering whether to do HIFU or..." + (show)

I have an esential tremor and familial tremor. I went through the Mayo 5 day BeST program for fundamental tremor which helped. I oppted to have DBS surgery 5 months later. My tremor is 90 percent controlled.

booplagirl3 | @booplagirl3 | Jun 23 7:19am

Yes, My Sisters Situation Is More Not Having The Ability To Use Her Hands .. It Started With Her Handwriting In Her Right Hand And Now She Cant Function At All With That Hand And It Has Started To Move Over To Her Left Hand. Tremors Are There But Not As Bad. She Also Can't Get Comfortable As Shes Struggling With Almost Everything. She Can't Dress, Cook Or Do Any Of Her Normal Activities That She Used To Be Able To do . Shes Been Trying To Hold Her Job As An Accountant But I Think We Are Now Going In the Direction Of Disability. 3 Years ago, She Was Fine And Thee Process Of Diagnosis Has Been Frustrating to Say the Least.

Thank You for Your Valuable Information,
Best Of Luck To You and So Glad Something Worked To Help You
Sincerely,
Grace
. .

gethersno | @gethersno | Aug 15 11:08pm

In reply to @radioactivems "I haven't been officially diagnosed yet, but it appears I'm dealing with symptoms of both disorders...." + (show)

I've had ET for 24 years. I'm pretty much maxed on my medications, a beta blocker, a seizure medication, and a migraine medication. I saw my neurologist this week and she sad I was candidate for the Focused Ultrasound Therapy. I'm still in shock and trying to decide.

meitsjustme | @meitsjustme | 3 days ago

This appears to be an old thread, but in case anyone is still reviewing it, I'm interested in knowing if people have had success with focused ultrasound for tremors. My husband has essential tremor and mild cognitive impairment. His neurologist advised him to look into focused ultrasound because the anti-tremor meds he's been prescribed may be adversely affecting his memory.
Specifically, it would be important to know of any permanent downsides.

laura890 | @laura890 | 1 day ago

@meitsjustme
Hi,
Thank you for your post. I am scheduled to have this procedure in December, 2026 in NYC but am considering postponing it. At first it seemed like the perfect solution to my tremors and being able to stop the rather high dosage of Primadone I am taking. However, I have recently met someone who sailed through her first procedure but has had difficult side effects from her second procedure. These include dizziness, nauseousness, and swallowing issues. I have called my doctor’s office and asked more about the frequency of these side effects and was told “more people don’t have them than have them.” That was not reassuring to me.
I would like to hear from more people who have had this procedure done.
I should note here that I have Essential Tremor and not Parkinson’s.

Lisa Lucier, Moderator | @lisalucier | 1 day ago

In reply to @laura890 "@meitsjustme Hi, Thank you for your post. I am scheduled to have this procedure in December,..." + (show)

@laura890 - I moved your post into this discussion specifically on essential tremor and high focused ultrasound so you could speak to others talking about this procedure who have the same condition as you mentioned. Hoping you can chat with members such as @rica @tedalmon @marichu and others and they will share with you what they know about this procedure for essential tremor.