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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@purpleturtle

I have been diagnosed with essential tremors in my left hand and take 50mg of Primidone 2x a day. They are getting worse and starting in my right hand so my geriatric doctor increased my dose to 75mg 2x a day. It doesn't seem to make a difference and now I have occasional shaking on the right side of my head. I can't see my neurologist until August.. My sister also has them.
I am not sure what I can or should do.. I had a menginoma tumor removed 3 years ago but I don't think it is causing the tremors. I also take blood thinners so any changes in my dose or medication effects my levels. I use light weight utensils because of weakness inmy Hans I have a hard time controlling and lifting heavier ones .

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@purpleturtle Thankfully, my essential tremor doesn't interfere with my life very much, but enough to know how you're feeling. Before I retired, my second vocation was painting houses. I've always enjoyed doing the trim work, but I would have to find a way to steady my hand. If I could rest my wrist on something, it helped, or if I could, I'd steady my painting hand with the other one. My handwriting has suffered, which is annoying to me because I had such good penmanship. Does using that word date me?

Have you read up on the medication you're taking for it? Do you believe that increasing the dosage is the right thing for you? When I face that kind of question, I send a message to the doctor and tell them my concern. My personal belief is that it's my body, and I know how things feel better than anyone else, so I have to make myself take charge of the care of it. I told my pain doctor today that I want to taper off the treatments one at a time, to figure out which things are helping and which I can do without. I'm self-advocating, something that doesn't come naturally to me.

I hope that your symptoms won't have to continue until August. Are there any adjustments you can make, such as the timing for your meds, or taking them in smaller doses, more frequently? I'm sorry that you are going through this. I pray that you find a way to manage.

Jim

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Hi!
I have ET since I was 20 I am now 81, as the doctors say I am the textbook of just what it is. I have 5 uncles that had it, It does run in
families, now my daughter has it she is 50. As I aged it has gotten really bad in both hands and my arms. I have tried all the meds for it, but nothing
really worked, but I take Klonipin, and Inderal they help, the best..
stops the shakes altogether is a glass of wine before dinner, it will stop shakes for a few hours.

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@marcia115

Hi!
I have ET since I was 20 I am now 81, as the doctors say I am the textbook of just what it is. I have 5 uncles that had it, It does run in
families, now my daughter has it she is 50. As I aged it has gotten really bad in both hands and my arms. I have tried all the meds for it, but nothing
really worked, but I take Klonipin, and Inderal they help, the best..
stops the shakes altogether is a glass of wine before dinner, it will stop shakes for a few hours.

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Marcia, That must've been especially hard to understand the tremors at such a young age and to witness your daughter now experiencing the same thing.

You'll notice that I moved your post to this existing discussion:
- Essential tremors: any ideas on coping and managing tremors? https://connect.mayoclinic.org/discussion/essential-tremors-1/

I did this so you can see the previous posts and connect with other members like @jmb73 @brklimeks @dianecostella @stefspad @jimhd @purpleturtle who have experience with ET.

How is your daughter managing her ET? Does it help her to know that you've lived with them for all these years?

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@thankful

@hopeful33250, @jimb- I still have some triggers though I just checked another one off my long held list. Just got back from Victoria B.C. and went out on a small whalewatching tour boat quite a ways out into the ocean. Luckily is was very calm and there were lots of Humbacks & Orcas for distractions!
All in all walking for me is a great stress reliever. I generally go 4-5 times a week on a 3 1/2 mile trek that is mostly wooded and on some boardwalks through some ponds & creeks that always have lots of wildlife.
Also, since writing is the toughest for me I try noy to put myself in situations that when I need to do it I do it earlier in the day and if it's out in public I try to move down the counter out of the way or simply have my wife sign for me. Seek to be joyful! Jim @thankful

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I lost my writing about 5 years ago, but the bank made me a stamp with my writing before
I lost it, so I can sign my name on legal things. When I have to have things filled out, like
in a doctor's office, I always ask for help and tell them I can't write.
I can't raise a glass to my mouth so with everything I drink I use a straw, In my wine I got these
stir straws and that works. I hate essential tremor, I have had this since I was 20 and I am 81
now, so you see I have dealt with this for many years. I make a lot of messes for myself to
clean up all the time.
What really is bad is so many people do not know what ET is, they don't have enough funding to get it out to the public.

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@colleenyoung

Marcia, That must've been especially hard to understand the tremors at such a young age and to witness your daughter now experiencing the same thing.

You'll notice that I moved your post to this existing discussion:
- Essential tremors: any ideas on coping and managing tremors? https://connect.mayoclinic.org/discussion/essential-tremors-1/

I did this so you can see the previous posts and connect with other members like @jmb73 @brklimeks @dianecostella @stefspad @jimhd @purpleturtle who have experience with ET.

How is your daughter managing her ET? Does it help her to know that you've lived with them for all these years?

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Colleen, I could not find you again I wrote a reply to someone else, I just got on
this and not sure how to use it, but I just found you.
My daughter has it in her legs and not really bad in her hands yet.
I use a straw with everything I drink, I shake too much to bring the glass up to my mouth.
and I make a lot of messes for myself to clean up. using a blow dryer on my hair I bang my
head a lot.
There is also a support group I have been in for a long time. it is ---essential tremor.org that
is very helpful also. Anything you need help with just ask me, I have been through it all.
I can't even write anymore, lost it about 5 years ago. Don't ever rush that will make you
shake even more, never rush!!!
good luck and you just have to try and figure the easy way for yourself.

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I’m not a doctor but I’ve had idiopathic neuropathy for about two decades and after the first few months it never got worse. I think it is possible for it to travel up the extremities. I’ve been on Gabapentin for about a decade and had a spinal cord stimulator implanted to interrupt the nerve signals and reduce the amount of medication. I would get a second opinion if I wasn’t satisfied with the doctor’s treatment plan.

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@marcia115

Colleen, I could not find you again I wrote a reply to someone else, I just got on
this and not sure how to use it, but I just found you.
My daughter has it in her legs and not really bad in her hands yet.
I use a straw with everything I drink, I shake too much to bring the glass up to my mouth.
and I make a lot of messes for myself to clean up. using a blow dryer on my hair I bang my
head a lot.
There is also a support group I have been in for a long time. it is ---essential tremor.org that
is very helpful also. Anything you need help with just ask me, I have been through it all.
I can't even write anymore, lost it about 5 years ago. Don't ever rush that will make you
shake even more, never rush!!!
good luck and you just have to try and figure the easy way for yourself.

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@marcia115, I’m glad you were able to post again and really appreciate the picture you painted of what it is like to live with essential tremors and the support that you’ve found. It sounds like you have learned to have patience with yourself. I can imagine that took a lot of self talk. Never rush is also a good tip. I suspect any additional stress makes the tremors worse.

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@colleenyoung

@marcia115, I’m glad you were able to post again and really appreciate the picture you painted of what it is like to live with essential tremors and the support that you’ve found. It sounds like you have learned to have patience with yourself. I can imagine that took a lot of self talk. Never rush is also a good tip. I suspect any additional stress makes the tremors worse.

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Yes it does. I’m taking Gabapentin and have involuntary jerking in my legs.

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@kskill39

Do you have a group for essential tremors?

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I wanted to also have a group for ET, people don't realize how
this affects everyday living. I myself hate being this way, it is
very hard. I do have a glass of wine before dinner and it stops
my shakes for a few hours, Everything is hard to do.

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@colleenyoung

@marcia115, I’m glad you were able to post again and really appreciate the picture you painted of what it is like to live with essential tremors and the support that you’ve found. It sounds like you have learned to have patience with yourself. I can imagine that took a lot of self talk. Never rush is also a good tip. I suspect any additional stress makes the tremors worse.

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rushing is a big no-no it will really start the tremors going, there
are times when you have to rush and everything goes wrong because
your hands shake so much. Stress your right Colleen does not help. I have
had it for so long that I just learned to work with it. I make a lot of messes that
I have to clean up all the time.
I don't like to go out for lunch, because I shake too much, once in a while I will
go out but I have 5 0z. of wine so I won't shake.

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