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Essential tremors: any ideas on coping and managing tremors?

Posted by jmb73 @jmb73, Aug 23, 2019

I saw my neurologist yesterday and he said that I have essential tremors. He said they will get worse and progress to my other hand. Do any of you have this and if so is there any way I can slow the progress. He said it will probably take 3 years to get really bad. I am on Gababentin for fibromyalgia and restless leg and that is one of the drugs that is for these tremors. I am dropping things from my left hand and he said that will get worse too. I am buying plastic glasses as I dropped a real glass in the dishwasher- what a pain that was to get all the glass slivers out of the dishwasher. I would appreciate any ideas on coping with this and how I can manage it. Thank you

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Mary Klimek | @brklimeks | Sep 3, 2021
In reply to @waterboy "jmb... I also have ETs, but they seem to be milder than yours. Mine seem to..." + (show)
@waterboy

jmb... I also have ETs, but they seem to be milder than yours. Mine seem to be worse when trying to do more precise things...like writing, typing ect. I can carry a glass, or cup. I was evaluated at Mayo, Rochester for DEEP BRAIN STIMULATION, OR PRECISE ULTRASONIC ABLATION. However, I was declined for multiple reasons... age, severe COPD, PEs, Alpha 1, and stage of condition. DBS is where they implant electrodes in your brain (like having a pace maker), the PUA is where they use ultrasound to ablate part of the control center of your brain (you can spend 2 to 3 hours going in and out of an MRI machine.)

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Just had semi annual visit with my movement disorder doctor. I gave run the gammet of drugs for ET and none of them helped. I’ve been on Gabapentin for several years including the maximum recommended dosage (2700 of mg) without relief. Chose not to have ultrasound therapy or the implant. I’m going to try a very small dose of Valium only when crafting and sewing as those are impossible to do with tremors. Has anyone tried Valium?

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1 reply
kskill39 | @kskill39 | Sep 3, 2021

Do you have a group for essential tremors?

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2 replies
kskill39 | @kskill39 | Sep 3, 2021
In reply to @kskill39 "Do you have a group for essential tremors?" + (show)
@kskill39

Do you have a group for essential tremors?

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ET can just totally wreck your way of life and dealing with it s a daily challenge, requiring constant checks of whether or not you’re up to doing things.

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dianecostella | @dianecostella | Sep 5, 2021
In reply to @brklimeks "Just had semi annual visit with my movement disorder doctor. I gave run the gammet of..." + (show)
@brklimeks

Just had semi annual visit with my movement disorder doctor. I gave run the gammet of drugs for ET and none of them helped. I’ve been on Gabapentin for several years including the maximum recommended dosage (2700 of mg) without relief. Chose not to have ultrasound therapy or the implant. I’m going to try a very small dose of Valium only when crafting and sewing as those are impossible to do with tremors. Has anyone tried Valium?

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I have not tried Valium. I have an appointment wit a Movement Specialist on Wednesday. I am already taking Gaberpentin for my autonomic small fiber neuropathy (1800mg) and I already take Klonopin. I am nervous because I take the medication they prescribe for this and still have the tremors pretty bad.

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2 replies
dianecostella | @dianecostella | Sep 5, 2021
In reply to @kskill39 "ET can just totally wreck your way of life and dealing with it s a daily..." + (show)
@kskill39

ET can just totally wreck your way of life and dealing with it s a daily challenge, requiring constant checks of whether or not you’re up to doing things.

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I saw a clip on YouTube where a man had essential tremors pretty bad and he had a procedure done under an open MRI it took four hours. When it was over his hand did shake at all. There is a treatment for this if it gets really bad.

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Bill | @waterboy | Sep 6, 2021
In reply to @dianecostella "I saw a clip on YouTube where a man had essential tremors pretty bad and he..." + (show)
@dianecostella

I saw a clip on YouTube where a man had essential tremors pretty bad and he had a procedure done under an open MRI it took four hours. When it was over his hand did shake at all. There is a treatment for this if it gets really bad.

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I believe what you are describing is PRECISE ULTRASONIC ABLATION. I was evaluated for that and DEEP BRAIN STIMULATION at Mayo in Rochester. they decided I wasn't a good candidate for either because my symptoms weren't bad enough.

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dianecostella | @dianecostella | Sep 6, 2021
In reply to @dianecostella "I saw a clip on YouTube where a man had essential tremors pretty bad and he..." + (show)
@dianecostella

I saw a clip on YouTube where a man had essential tremors pretty bad and he had a procedure done under an open MRI it took four hours. When it was over his hand did shake at all. There is a treatment for this if it gets really bad.

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I watched it and feel reassured by this. Thanks for mentioning it.

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1 reply
Kay Rovik | @anniemaggie | Sep 6, 2021
In reply to @dianecostella "I watched it and feel reassured by this. Thanks for mentioning it." + (show)
@dianecostella

I watched it and feel reassured by this. Thanks for mentioning it.

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I have really bad essential tremors that are controlled by propanolol. Be very careful with this drug, as it lowers your blood pressure. It is used for many things such as headaches, anxiety etc. I take one 20 mg 3 times a day and primidone at bedtime that also is an anti seizure, which helps with the anti seizure, which I don't have very often. I seem to have everything. I mean several autoimmunes, 4 rare etc, makes life interesting. My Neuro tried different versions.

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dianecostella | @dianecostella | Sep 6, 2021

My tremors started a few months ago right hand only. I didn’t hame them very often. Now I have one everyday or multiple times each day lasting anywhere from one minute to 40 minutes. I have a few things wrong with me and this is the last thing I needed. I am a woman of faith and I accept the path I was chosen to walk. Acceptance is key because this is something we have no control of.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 6, 2021
In reply to @dianecostella "My tremors started a few months ago right hand only. I didn’t hame them very often...." + (show)
@dianecostella

My tremors started a few months ago right hand only. I didn’t hame them very often. Now I have one everyday or multiple times each day lasting anywhere from one minute to 40 minutes. I have a few things wrong with me and this is the last thing I needed. I am a woman of faith and I accept the path I was chosen to walk. Acceptance is key because this is something we have no control of.

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Words of wisdom, Diane...
acceptance IS key.

May your days be filled with "adjusting the sails". Wishing you peace.
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