Essential Tremor

[elkmagik]

Hello,
I am now a disabled Vietnam Veteran that has among other things Essential Tremors I was diagnosed by the VA four years ago and was told it was from being exposed to Agent Orange.

I first started noticing my hands shook a little back in the 80s but it did not really effect my work as an electrician and high voltage splicer until about 6 years ago. Now I have to eat with a spoon so I can get some of my food in my mouth and can only have a half filled glass of water or I will spill it everywhere. My tongue flops in my mouth when I talk and I have a bobble head.

I also suffer from PTSD, which did not really show it's ugly head until a co-worker was electrocuted and I started having flash backs which lead to contacting the VA in 2003. My PTSD causes anxiety attacks which now throw my ETs into hyper drive to the point I cannot talk or control my body from these horrible tremors which totally freaked me out the first time or two. I hate to go out in public because I shake so bad which becomes a vicious cycle as my anxiety builds. Many times I have had to leave with my wallet in my mouth to prevent me from biting my tongue.

I take Primidone 50MG twice a day now to no avail. I am now totally disabled drawing my VA and Social Security, but this is not what I want to do. I have always worked with my hands, building and creating many things in my life. I have always had a great love for art, but because my tremors increase when ever I bring my arms and hands out of a resting position which makes it impossible to use a pottery wheel, use my camera or type this note to you. ETs have caused severe depression for me and I have come here for counsel and hopes of a little relief so I can regain some quality back into my life.

I have heard of Botox injections but do not know if this is the way to go. I know there is also a surgery that can be preformed too, but I dont know if the VA is ready to do that yet.

Thanks for the ear,
John

[axnightowl]

John,
I would read through the posts and ask your doctor about uping and or changing your medication. It may take some time to find something that works for you. Many of us take a combination of meds

[macacoza]

Hi John
Read thru some of the other post. I take a combination of Primidong and Propranol...It takes both. One alone does not do the trick any more. It started to effect my voice about a yr ago and I am considering botox for that. Was given the name of a Dr that does that especially for ET last week. I knwo it is a short fix, but I want the relief it gives. HAve looked into the surgery, but am not ready to take that step. As long as I can function at the level I am with meds I will continue this way. I wish you much luck..keep talking about it..and asking questions. What works for some does not work for others...and visa versa! God Bless!

[elkmagik]

Thank you for your replies to my thread. I have learned I am not to only one with ET's and that there are other medications besides the Primidone I have been on for the past few years.

I am taking notes from these threads on Essential Tremors so I will have a better understanding of ET's and and what could be done to give a bit of quality back into my life. I have an appointment for 4/4/08, next Friday, with the VA Hospital in Salt Lake City, and I will be prepared with questions on other medications and injections. I want my left hand back so I can write my name and eat with dignity again. I will post as things move along.

Thanks again
Elk

[macacoza]

HEY ELK!!!!
How did the Dr. appt. go????
deb

[elkmagik]

Hello All,
Friday was a very long day. Rising at 4:30am to catch the VA Van for my ride to Salt Lake.
Then the long wait until my 1:30pm appointment with Neurology Movement Disorder Office.

After my examination I was given an increase to 175MG Primidone twice a day, but because I was the last to have an appointment, I opted to have the medication sent to my home, so my fellow veterans would not have to wait an extra hour for my prescription to be filled. Normally it takes just a few days to receive them and then I will start the increase dosage.

My wife made me write some of my inner feelings about my ET's and how it is effecting my motor skills, depression and overall quality of my life and all who love and care for me. This I would recommend to all to do. For me it is hard to express the effects it has on my ability to do the simplest of things and how severe my depression can take me over this wretched ailment when I am face to face with the Doctor. This time it was written and hopefully the new increase will give me a "New Lease" on my life, so I can continue my different projects that have been gathering dust.

I will continue to post to let you know how this new dosage is working over the next few weeks.
Thanks again for all the support and information,
Hugs, Elk

[dduck]

Hi Elk,
I've had ET since I was about 10, so I have years of coping skills. It may be that the propanolol is contributing to your anxiety - beta blockers are bad for causing depression. I had a hard time with it.

I took primidone for many years and it was quite successful, but it began to stop working in about 1995. I continually upped the dose till I was taking about 500 mg twice a day. And it still wasn't working very well.

For me, the best solution has been the Deep Brain Stimulator procedure. I had it done in 2003 and am now pretty much tremor free. There are discussions about it on this forum as well as the International Tremor Foundation http://www.essentialtremor.org website. I wrote a blog article on it in 2005 http://duckalogue.blogspot.com/2005_01_01_archive.html that has more links.

[macacoza]

LEt me know how the upping dosage effects you...I take both propranol and primidone...yes, I am tired...but I ahve been on both so long I just keep chugging along..haha..Good luck to you!
deb

[dduck]

I don't take anything for the tremor anymore, and I couldn't ever take propanolol (tried it for about a month and had a huge problem with anxiety & depression).

The primidone did work for many years. I was on about 325 mg 2x a day and it worked very well for several years. I didn't really have any side effects after the first few weeks. I started at a lower dosage and worked up to that one, which was the best. I've noticed that people's experiences with drugs is VERY different.

After some years, though, it got less and less effective so I upped the dose. It would help for a while then I'd have to raise it again. My neurologist was pretty open to letting me manage my own dose and would just write the higher dosage into the next refill. But when I got up to 500mg 2x a day, we both decided that something else had to be done. He recommended the DBS surgery and I researched it.

[macacoza]

Did you get dizzy while taking the meds?? I am not sure which pill it is, but 1 of them kicks in about 3 hrs after taking them and I get horribly woozy!
I am so happy for you that the surgery worked...
good nite and sweet dreams!
deb