Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 01-26-2014, 11:43 PM #1
ashtonblue8 ashtonblue8 is offline
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Default Essential Tremor and your story

Hello my name is Ashton, I am 18 years old and I was diagnosed with essential tremors when I was 3. Well first of all, all these threads are people just asking for help, I will tell my story and I want to hear back from you about your struggles with essential tremors so we can help eachother out.

From the age of 3 to about 9 I had a really hard time growing up. You know how mean kids can be. So I was an out cast, I couldn't draw or color like the other kids, and I couldn't hold on to my drinks they always spilled so I had to have sippy cups, and so on. I had to change schools every year till third grade when my parents had another kid and we finally settled down.

I got so frustrated after that I knew I had to show everyone how I could be better, so I spent the next few years learning to draw and learning how to play violin and viola. Once I turned 16 though I started having seizures and my doctors don't know why. So for tremors/ what they think are seizures I have taken propranolol, and for my tremors it was a miricle, for a month then they came back worse then ever, and it never helped my seizures.

So then I took topiramate and it doen't help my tremors at all but it does help my seizures. The only reason I wrote in my seizures is because my doctor seems to think my tremors and my seizures are connected I don't know whathe means other then they are both neurological. So other then that my tremors are getting worse at an amazing rate, and I am slightly worried because I was going to go into animation as my carrer, and I would really hate for this to take over my life I do love to play music. So whats your story?
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Old 03-28-2014, 01:42 PM #2
mikeymike mikeymike is offline
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Default sorry to hear your struggles

I have had Essential tremmors since i was about 18 or 20. I had tried a blood pressure medication that the DR gave me but it did not seem to help. Mine is not that bad but it is bad enough that people always say "why are you shaking". It seems to really get bad when i am doing hard work in the yard or working out. It get's bad enough that i spill my water sometimes when i drink. I will keep you in my prayers that things get better for you.
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Old 03-30-2014, 10:21 AM #3
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Originally Posted by mikeymike View Post
I have had Essential tremmors since i was about 18 or 20. I had tried a blood pressure medication that the DR gave me but it did not seem to help. Mine is not that bad but it is bad enough that people always say "why are you shaking". It seems to really get bad when i am doing hard work in the yard or working out. It get's bad enough that i spill my water sometimes when i drink. I will keep you in my prayers that things get better for you.
I am sorry that you have it also. Maybe one day there will be a cure to help us all no matter how severe the case our tremors are. I wish you the best, and try your hardest no matter what limits people put on you because of your tremor 'disability'.
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"Thanks for this!" says:
mikeymike (04-03-2014)
Old 04-05-2014, 03:53 PM #4
dbs012014 dbs012014 is offline
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Default Deep Brain Stimulation will control essential tremor.

Ashton, your story sounds a lot like mine. I've had ET since I was 10 (now 66). Please go to *edit* and review their website about deep brain stimulation (dbs). Then go to *edit* and search for dbs + essential tremor. Then you'll have most of your questions answered. Your neurologist can refer you to a neurosurgeon. Good luck and NEVER GIVE UP!

Last edited by Jomar; 04-05-2014 at 03:59 PM. Reason: sorry, no linking or attempted redirects for new members
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Old 04-05-2014, 05:56 PM #5
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Originally Posted by dbs012014 View Post
Ashton, your story sounds a lot like mine. I've had ET since I was 10 (now 66). Please go to *edit* and review their website about deep brain stimulation (dbs). Then go to *edit* and search for dbs + essential tremor. Then you'll have most of your questions answered. Your neurologist can refer you to a neurosurgeon. Good luck and NEVER GIVE UP!
Well thank you for your help. I wont give up.
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Old 08-26-2014, 08:50 PM #6
Kari Ann Kari Ann is offline
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Default Kathy

Hi,

I'm so sorry that you are going through this at such an early age. I am 67 and it has only been a real bother to me for about the last 10 years. It has affected my voice which bothers me the most. I have found a neuro surgeon in Thousand Oaks, Ca at Los Robles Hospital, Dr Ronald Young who does Gamma Ray surgery for tremor. He also works out of Seattle. I am going to have it done next month. I have spoken to several peoople who have had very good success with it. There is an 80% success rate.
I wish you much luck.
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Old 08-26-2014, 09:29 PM #7
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Originally Posted by Kari Ann View Post
Hi,

I'm so sorry that you are going through this at such an early age. I am 67 and it has only been a real bother to me for about the last 10 years. It has affected my voice which bothers me the most. I have found a neuro surgeon in Thousand Oaks, Ca at Los Robles Hospital, Dr Ronald Young who does Gamma Ray surgery for tremor. He also works out of Seattle. I am going to have it done next month. I have spoken to several peoople who have had very good success with it. There is an 80% success rate.
I wish you much luck.
Thank you so much for your support it really helps and I wish you the best as well.
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