Essential Tremor Support Group

I finally found a neurologist that is actually helping me. I went there and he was doing the standard tests touch you finger to your nose etc etc. I have to have the brain wave test done in couple of weeks. I have tremors in my hands that have been getting so bad it effects my job that i said i need to see a neurologist that will understand. So when i was at the nerologist he said to me that et will get worse with age (tell me the truth now) he also could see a slight tremor in my head. not what i want to hear I was there for my hands. So i was thinking ok i am 38 years old and i have a hard time with my hands shaking tired of feeling like everyone is thinking that i am nervous cuz my hands shake now my head is starting to shake will i look like someone who is in their 90's shaking (no offense to older people cuz that is what people think of when your head and hands shake), no one else notices yet thank god but when the neurologist said that he could see does that mean that sooner or later my head is going to start. The dr has me taking mysoline every night when i go to bed i have to take 1 pill a night for two weeks if that doesnt help have to up to 2 pills a night then 3 pills a night etc etc til i find the right dose. Has anyone taken this and does it work?

I know that medically this is not going to hurt me but i feel like it still effects my well being. I hate that i have to explain that when people are talking to me that no i am not nervous i have tremors. When i try to take pictures they suck i have to make sure that if i am taking pictures of something like my sons prom i have to have some else there taking pictures just in case mine dont come out cuz of my wonderful tremors in my hand. My supervisor at work thank god understands what i have cuz when we first where meeting I had to explain that my hands shake from et. and that yes of course i am nervous meeting with her but it is 10 times worse when you have et.

Post edited by: meshel670, at: 03/07/2009 16:07

I haven't heard of the brain wave test. Why will they do that? I've also never heard of your medicine, but I am very anxious to find out how you like it. I have used mine since I was 14 and now I'm 37.

Taking pictures - yuck! I actually got to go to my dream concert this past week - Fleetwood Mac if you couldn't tell by my picture. I brought binoculars with me, but forgot my tremor meds. I found a way to try and balance the binoculars, but I think I also came very close to poking my eyes out because I was pushing them so hard against my head to try and keep from shaking.

meshel - have you gone through your testing yet?

I am new here. I read that you were taking mysoline. My doctor prescribed the same thing for me, and weened me off of the propanolol at the same time. I was up to 1 in the morning and 2 at night. At first, (only about the first 3 days) the mysoline seemed to work. When I got up to 3 a day, I literally had my first seizure! It was really scary. At first I thought it was just the tremors, but it went to places in my body I hadn't had them before. Lasted about 5 to 10 minutes and went away. Since then, I have weened myself off the mysoline and because of the seizure, my tremors are way worse. It's hard to do anything without my hands, arms, legs and head shaking. I hope you have better luck than I. Good luck. And anyone who tries to stand in judgement of someone with tremors (laughing, calling it old syndrome, etc.) ought to have their butts kicked! I've been dealing with this for 4 years now.

Launie

I'm 67 and was diagnosed with ET by a Neurologist about 2 years ago. I have hand tremors and it's also starting in my face or head. Last November or December I noticed the hand shaking worsened. Do your hands shake while you are at rest? Mine do not, only when I have to use them such as holding a camera and handwriting. I can not write legibly anymore and it's very frustrating. How do you handle writing? I may try ordering a weighted pencil through an Occupational Therapy catalog. Keyboarding is a little slower than what it used to be. Can you eat OK or do you need special utensils?

You may even try a different Neurologist.

ET all about acceptance. How does it go....Lord, grant me the serenity to accept the things I can not change.......

Bless you

ET is caused from something in the brain not connecting, consequently a brain wave test.

Seizure, I've never heard of that. And it makes the tremors worse afterwords! Is this common? I'm only taking Colonsapam but my hands still shake but only when I use them...not at rest. I can't do handwriting at all anymore. Can you write? I'd like to know if anyone has ever tried a weighted pencil and what the results were. The shaking is also starting in my face or head - hardly noticable. I retired just before this, not that I want to go back to work but what about those younger people with ET. I'd also like to know if ET goes untreated will it get worse? But, on the other hand, ET gets worse with age but will treatment slow it down?

Chickadee

Hi

Seizures are the ultimate work out on the muscels. it would seem to be a factor in triggering ET's. I have fibromyalgia and when my muscles are tensed I shake ( in my legs too. My penmenship suffers on occasion it is unreadable. some people have used weighted pens with success. My Dad had parkinsons and used weighted utincels. sorry to say it is a progressive condition. There are meds and last resort surgery.

Seisures must very painful. Your description sounds kind of like muscle spasms. I've had muscle spasms in my back and I rate them a 10 on a scale of 1 to 10 in pain, however, they only last 30 to 60 seconds. As long as I keep my core muscles strengthened I don't have the spasms and that means doing physical therapy exercises 3 times a week to maintain the strength. I've been doing this for 4 years.

I hope some new meds or exercises or another doctor can help you with some of your symptoms. That would make your life a little easier. I realize ET is progressive and can, in some cases, lead to Parkinsons disease. I may look into occupational therapy because I don't want to give up my hobby of sewing and quilting.

Just take it one day at a time andn let me know how you are doing.

Chickadee

Hi

Our brain receives information from our 5 sences then it sends that information to differnt parts of the body. In a siezure the brain gets confused and send messages all over the body at one time...rapidly. It's not a spasm but a reaction to a comand. It cause a person the need to rest for awhile afterwards.