Essential Tremor Support Group

Essential Tremor (ET) is a neurological disorder characterized by shaking of hands (and sometimes other parts of the body including the head), evoked by intentional movements. The incidence is unknown, but is estimated to be as common as one person in 20, and it is the most common type of tremor and also the most commonly observed movement disorder.

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jolene-86 10/16/2017

Hi, I am very new to this, this support group seems like a breath of fresh air to me, reading some of the posts has given me the courage to post. So I am 30 (31 next week ). I was diagnosed with ET when I was 17, I didn't really pay much attention and if I'm honest didn't really believe it. My tremors have gotten worse the older I've become, I have ruled out tobacco, alcohol and caffeine as these make it even worse. I cant have a full cup/glass when I have a drink as I spill it, I eat smaller food with a spoon as I can't keep anything on a fork, my head has become noticeably worse during the day and it takes around 2-3 minutes for it to relax when I get into bed. I have tried different medication and nothing relieves it at all. I also have internal tremors and these are not very nice.

My main question is, has anybody found anything helps them? Other than medication.

Thank you you for reading my post :)

superdecooper 10/18/2017

Hi jo,
I'm not on meds yet but will probably be before too long. Do you drive. Cause Seems like an area where I could have some issues with that.

I do t take anti g yet, but I'm starting to limit caffeine and chocolate.
-S

jolene-86 10/19/2017

Hi :)
I do drive, this is The issue I have, I cannot , not drive as I have to get my son to school then to work and they are 6 miles apart and I have a limited amount of time to do this in.
I do have issues with my head when driving but it's never caused me to have an accident or swerve the car. Although I still tremor it doesn't have a huge impact on driving.
I have thought about this a lot recently and I've come to the conclusion that I'll probably have to stop driving before long.
It took me a long time to pass my test because I was nervous and this made the tremor worse but my instructor just thought I was really really nervous.

Caffeine has always been something I can't have, I once had caffeine tablets as I was working two jobs, it was awful, I was just shaking constantly, I've not had coffee for a long time and can say you will notice a difference with cutting it out,
-Jo

superdecooper 10/21/2017

Hi Jo,
do you have a tremor when you rest you hands on your computer mouse. Or rest them on a table or on you lap? I do. I'm wondering if that's part of essential tremor or something worse.

Also, i hope you are able to drive as long as possible . nobody wants tohave to depend on others for transportation from place to place. that can be difficult. I'm going to stop the coffee and chocolate next week. I don't need that kinda shaking in my life.
-s

Togahoney 10/31/2017

Hi,
I have that problem with my hands, when they rest on my ergonomically corrective pads. The pads help me, since I've had carpal tunnel surgery about a decade ago. When I don't use them, my hands shake worse. Some days are worse than others. I also use Therapy putty to help strengthen the muscles in my hands and exercise them using hand weights. While i did go to physical therapy for another issue with my hand, it has helped somewhat with less shaking.

Togahoney 10/31/2017

Maybe Medical Hypnotherapy may work. I have used it in the past and it helped with so many other things that were ailing me. It helps to calm the mind, and the body as a whole. I also have ET in my hands and voice. I posted about a speech pathologist I am seeing and it is helping with my voice. I have taken many Energy Medicine classes in the past before my ET started becoming more noticeable. I also listen to relaxation CD's during the course of my day and before I go to sleep. It does seem to help. The Medical Hypnotherapy is used more focused on specific ailments and or injuries. Try to find someone who has been doing it for a while and is either licensed or has credentials.

GKSolusions 04/07/2018

You might want to consider Gamma Knife as a treatment option. Essential Tremor can be treated with Gamma Knife, it's called Gamma Knife Thalamotomy, which is a non-invasive procedure. Please visit CaliforniaGammaKnife.com. Dr. Ronald Young is a world renowned Gamma Knife neurosurgeon, who has over 25 years of experience treating Essential Tremor with Gamma Knife. He published several peer-reviewed articles on ET.

gmaof4 07/30/2018

Hi all ,
I’ve had ET over 35 yrs . I’m 66 now , on Lots of Primidone & the tremors are breaking thru anyway . My neuro sent me to a motion disorder neuro & he has recommended DBS on both sides of my brain . I asked about the noninvasive newer surgeries . He said that if theymiss , that can leave “ holes “ or destroy the wrong place ( my description) & that can be a problem . So I’m going forward in the process to see if I qualify for surgery . It’s really scary , but Primidone is not an easy drug to take & I don’t want to increase beyond my 150 mg . Hugs to all .

KevinN 07/30/2018

Please let us know how it goes and what you find out. I am not far enough to need it but it will be good to talk with someone that has it done. Just in case myself or others here need it in the future.

You are far more brave than I would be. Hugs

SimpsonsOK 07/31/2018

Hi to all. IETF has lots of info and research info. (International Essential Tremor Foundation). Thanks for sharing all these alternatives. First diagnosed at 5 y/o, but became worse over last decade. My neurologist sent me to a motion disorder neuro when he saw some signs of Parkinson, however she said it was ET without Parkinson. Agree that the internal tremors are the worst. Always take primidone in the morning med routine. If an out in public day will take a second one later. When tremors are breaking through, I sometimes add 1/2 a clonazepam. Caffeine, largest amount is in coffee, but tea, chocolate, and most soda/pop have some. Lots of teas and soda/pop will have varieties without caffeine. Thanks for all the great shares. Hugs to all.

SimpsonsOK 07/31/2018

Forgot to add that I am on a number of meds for medical conditions, Don't know if some of these may help with the ET. I do think some may. Hugs to all.

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