Essential Tremor

[elkmagik]

Hello all,

I have been on 175MG Primidone twice a day for almost a month now and can say it is helping quite a bit. I still have tremors but they are not as severe. I have been dabbling around with my clay a bit and writing my biography for my children and grandchildren while my hands are not bouncing so bad on the key board. I was also able to finally get my truck out of the garage, with the aid of a couple of friends as well.

I did experience 3 or more weeks of "hot flashes" which was very uncomfortable for a man to go through. Of course my wife loved it and teased me about my menopausal hot sweats, but they have diminished now, thank goodness. I feel sorry for anyone that has to go through them now, sorry ladies, I had no idea! I have a Orange 1977 Chevrolet Pickup that is called my "Hot Flash" and now bares the name on its tailgate. haha! [ http://elkzone.blogspot.com/ ] is my blog where I share bits of my life to my friends.

Because I am on medication for my PTSD and have an equilibrium issue, so I cannot really say if my dosage of Primidone made me dizzy or woozy from them though. I have slept sounder because I take my 2nd dose before bed [morning/evening 10/10] They have, much like most my medications I have to take, seem to have an effect on my libido, which I hope will disappear soon. This would be my worst side effect at the moment. Blah!

For me the medication increase have lowered the intensity of my tremors I still use 2 hands getting the tip of my cordless onto the head of each screw I placed into the deck I have been working on. Also, it takes 3 or 4 times longer to accomplish things than normal, but it sure is awesome to "NOT" spill my food and drink. I don't feel like a total bobble head and can hold a conversation without going into an anxiety attack. So it has also helped with my depression and anxiety, which is totally awesome!

I wish all a "Wonderful Summer"! While I am able to do things I plan to remain busy working on my "Honey-Do List" and play in my clay [I now have a kiln], but will return off-n-on to "Our" website.

Hugs to All,
Elk

[macacoza]

Good for you Elk!!..Keep going with the good thoughts and doing that honey do list!..I look forward to hearign more!
deb

[elkmagik]

Hello again,

I thought I should reply to Deb because it is important try and maintain a good feeling about yourselves. I have only dealt with Essential Tremors for maybe 2 decades and it was not until the last 5 years that they have been severe. I have lived an active "on the edge" lifestyle and struggle with depression and anxiety on a daily basis, thanks to PTSD. I survive because of "attitude"!

I have read most of the threads in Essential Tremors "Peer to Peer" and see so many young adults who are as debilitated as I have been; it makes my heart cry for them. I am 60 and just trying to finish or accomplish a few more things before I pass.

Pretend I am Wise, now that you know I am an Old Fart. Keeping a good "Attitude" is a mind set for me. I still get very depressed, I still have tremors and have anxiety attacks, but I really cannot do anything to prevent them; having memory issues helps too! haha! The trick is "Only You can make Yourself Happy", in doing so you will be content within your skin and will effect others in a positive way.

My depression has been severe enough to consider suicide on several occasions, but because death is so final; never have I had the "balls" to actually do it. What if I changed my mind later? Maybe it really isn't that bad! Plus, I have never been one to quit something. So Suicide is NOT a solution.

I hate my Essential Tremors for everything they have robbed from me, but I am stuck with them, therefore I learn to cope, even though sometimes it is almost overwhelming. I am still learning to smile when people stare at my shaking hands or my bobble head when I have to be in public. I stagger at times and actually was arrested because I could not pass the sobriety test by the local police before they knew who and what I was. It is way funny now but I was near postal when it was coming down, unable to talk and shaking all over because I went into an anxiety attack. This could have been on "Funniest Home Videos" and won me $10K.

Find hobbies and other interests that you can bury yourselves into. I play in clay and still try to be creative. I dry flowers and make special things with them. I got addicted to World of Warcraft for 5 years before I realized I was hiding in my room [Man Cave] playing all the time. Now with an increase in medication my hands still shake but through "determination" I am using this time to finish projects I started 5 years ago and to create new and stranger things.

I dwelled for several years on what I could not do anymore and became severely depressed. Then I started writing journals and it helped. I learned by writing I could quell the anger and depression I had inside of me. I am currently writing "John's Journals" and have covered the first 30 years of my life and have roughs of the remaining 30 years. I am doing this for my children, because I have children from 3 different marriages, thanks to PTSD and always running away when things got too close. Through Email and the phone I am in steady communications with 3 of my 5 children; the remaining 2 are sons that are doing things I don't care for and like all parents; had to open my mouth and voice my opinion. Duh?

Summer is here so get out there and plant a flower and watch it grow. Hug your cat or take your dog for a walk and feel good about yourself. If you have gone to my blog you will see that my dogs are my bestest buddies. If Boris could talk ... the stories he could tell.

Hugs to All,
I hope I was not being a total dork writing all of this. There are so many people with ETs out there I thought sharing what works for me ... besides medication ...and the knowledge that you are not alone with the daily struggles with ETs.

Elk

[macacoza]

Dear Elk,
Thanks for responding and for sharing this story. If you read soem of the othe rforums you will see I have been dealign with ET for many years. This past yr it is gettign worse and effecting my voice and my head. The voice part saddens me as I can not sing any more..it is not a thing of JUST singing badly..lol..I truly can barely sing. For those with ET that it effects yoru voice you will understand this delimma. It is hard to control the voice..cracks...breaks..just a mess. Singing was always a very big part of my life and now I feel as if soemthing has been taken from me. BUT...the many blessing that God has given me help to take the palce of this...grandbabies..my my my...and they love me in spite of the ET...I am very active. I have a garden..flowers..my horse..jeep riding..our HArley..and I go to the gym 3-5 days a week. It is good for my physical health and also my mental health. Does it get to me?? YES..at times...and then I stop and say...DEB..this is just a bunch of lemons..so I make lemonade!
Yesterday i went to my DR...he is doign a heavy metals test even though he does nto expect to find anything, but he is very good at trying to put my mind at ease if i coem up with something .
else...haha..
Thank you Elk...it is good to hear from soemoen else that knows the stress..the feelings...the hardships..but also with a good attitude..go for those walks and cherish each and every day!!!
deb

[curly]

hi brother. i am also a vietnam vet with essential tremor. i have always thought that there was a connection between this and exposure to agent orange but have found no doctors to corobarate. any information would be greatly appreciated. your brother in arms, curly.

[bigl50]

Hi I'm Larry
I have ET and a Vietnam Veteran need some information on ET and agent orange.
Who do I talk to about this. Please help Thank You.
I have doctor app. Nov 19, 2008

[lilred]

Hi Big 50,
I am also a veteran, but I did not go to Vietnam. The Air Force base where I was stationed (Eglin AFB in FL) was used to test Agegnt Orange. I went to the VA here and got on the Agent Orange Registry. Once they give you a physical, the information goes into a data base. I don't know what they do with the information. They are supposesed to keep track for any common problems, and research it. I also let them know that I thought that my ET was because of Agent Orange, and it is documented in my papers. I do not qualify for any disability from the VA, nor can I get any medical care because I made too much money for this year. I don't think you will find any physician that will stated that your ET is from Agent Orange. I am female by the way. No one in my family has ET except me. I was diagnosed with it in May of 2007. It is pretty severe. I am not able to work any more. I am/was a Registered nurse. My primary care physician and my Neurologist both have told me to apply for my SS disability.

My onset was rapid. I was able to go back to work for 11 months because I was in good shape once I was started on Primadone. My husband is retired and takes care of most of the things in the house. I drop things and stagger.

Good luck in your search for help from the VA.

Helen (lilred)

[oldvet]

I notice the subject was ET hand, head and speech. Many times Parkinson's disease is missed diagnosed. I would watch for this issue. If you do have Parkinson's I can assure you that it is related to the chemicals you were exposed to in Vietnam. I well over 75 scientific studies that support the association. I am Alan Oates and have Parkinson's disease. For the past 18 months I have dedicated my life to researching to see if there was a connection. The studies a group of us veteran have found just resulted in one of our member's claim for Parkinson's being approved for agent orange exposure.

You may email me if you have Parkinson's and were exposed to agent orange. [moderator note: e-mail address has been removed]

[Spion]

Elk (and others),

I'm an Afghanistan and Iraq vet, 48 years old, and told today by my doc that I probably have ET. I also suffer from PTSD. What a terrible combination!

The doctor said that the meds that he would normally use may exacerbate depression. Have you had problems in that regard? This is in regard to beta-blockers. I'm going back in in a couple of weeks and hope to get on something. The shakes are just bad enough to be really embarrassing and an inconvenience more than anything. I'm thinking of putting off any kind of drugs for awhile.

I don't think I've been around Agent Orange, but I've been around depleted uranium and a lot of old battlefield junk including Soviet chemical decontamination equipment in Afghanistan. My shakes started a long time before that though.

Thanks for listening.

[macacoza]

Hi Spion...I take a beta blocker..it slows my heart down and I do get tired, but not to the point that I cant do what I want. a problem that I do want to let folks know and I dont think i have mentioned before about the beta blockers. My sister passed away at the age of 49 from a heart attack ..will be 4 yrs in 2 weeks...because of heart problems running in our family I decided to go to cardiologist to be tested. Would have been comical if it hadn't worn me out so much! If you take a beta blocker no matter how long ..fast..and hard you walk on that darn treadmill you cant get heart rate up..haha. Just a bit of info to be aware of!...NOW..as for depression Spion...I cant speak for everyone , but depression can be a part of ET..and the meds can make it worse..BUT..a lot of that is up to you too...to all of us...I try to not allow that to overwhelm me..I try to look everyday at the blessings I have..my wonderful family..grandkids that i adore...friends that keep me busy...I love the saying...EVERYTHING HAPPENS AT EXACTLY THE RIGHT TIME...RELAX AND ENJOY THE ADVENTURE!..AND, i am also a great believer that if God brings us to it..HE will bring us thru it...I suggest you read thru all the other posts..there is some great info for you and you will meet a few wonderful folks...hang in there..we all in this together!
Deb