Anyone else suffer with essential tremors?

[Will D]

I've been living with Essential Tremor (ET) for 67 years, since age 10. It's a hereditary condition, mine came from my mother. Two of my five siblings have it also. Fortunately, neither of my children got it from me; so far.

I began taking Primidone about 30 years ago. It's a powerful drug. Folks who suffer from epileptic seizures take 500 mg or more. I started with 25 mg tablets and am now up to 250 mg once a day with the option of taking another half tablet when needed.

Recently, being concerned about the amount of pharmaceuticals I was consuming and having my neurologist suggest Deep Brain Stimulation (DBS) as well as hearing ads in the local media about the availability of laser surgery as a possible cure; I decided to explore the possibilities.

My neurologist provided a great deal of information and had me take a number of tests, including a MRI brain scan and psychological evaluations. What I learned was that I have not one, but THREE tremors; i.e., left hand, voice and right hand. That would require THREE procedures to possibly become completely steady. In addition, he discouraged me from considering the laser procedure because even though it is non-invasive, it is a one shot deal; i.e., they get it right the first time or you live with the consequences.

DBS, on the other hand, while being invasive, is adjustable. There is a great deal of information on the internet about it, including YouTube videos, being used for ET as well as Parkinson's disease. Having a hole drilled in my skull, a probe wiggled around to find the right spot while I was awake and then having a wire strung under the skin of my skull, down my neck to a control unit under the skin in my shoulder; didn't appeal to me.

By the way, ET is a "movement" condition; i.e., it is apparent when hands are moving. Parkinson's disease, which is non-moving; i.e.; your limbs shake even when sitting still. Advanced conditions of both will result in head shaking like the actress Katherine Hepburn, who had ET.

Having considered all the information, I cancelled the scheduled DBS procedure and asked my neurologist to bump my Primidone prescription up a bit. Then, I asked several of my customers (I'm still fully employed in my own business) if my tremors bothered them. All said it didn't bother them so long as I deliver the products they need on time. One customer intimated he suffers the same condition along with his two sons. I referred him to my neurologist, who is now caring for them also.

Regarding shooting with a tremor, this is what I do. First, I'm resigned to not being capable the fine accuracy enjoyed by my steady handed friends. However, I've compensated. I have all my rifle triggers set to exactly 4.5 lbs. The extra weight tends to steady my hand. I shoot semi-autos (1911's) in a "run, dodge & jump" (IPSC) league where I have good runs interspersed with not so good runs. My biggest problem is with single action revolvers at 100+ yard targets. I actually do better shooting revolvers double action so long as they are S&W smooth.

My recommendation? First, insure your neurologist specializes in movement disorders (ET and Parkinson's disease.) Review all the information you can get about all the possible procedures from your neurologist, study the wealth of information on the internet and then decide. You may decide, as have I, that living with Primidone isn't so bad.

 

[Nowoolies]

William Bonnie, l have been a cronic pain sufferer since 2004, too many motorbike accidents and broke my back in a few places, found pain medication not good (especially for shooting) until last year l started a trial of Suboxone, am now of almost all other meds and feeling much better in myself (&can shoot a lot better), in Australia Suboxone is very regulated, hope it's easier for you to try, good luck and l hope this helps you,
Turtle.

G'day Turtle566
See your up at this hour lol
What part of AUZZIE you in mate
Big question, what's and how does this Suboxone work I've tried via the doctors everything from ketamine down , Been looking with the doctors for something that might help and I've never heard of this suboxone
Cheers

 

[Joe Hooker]

Hi,
Newish member and very long time lurker who finally has some good info to share.
I am permanently disabled man due to back and nerve damage from life's activities and my own stubbornness.
During my late teen years I began noticing my shaking hands. As the years go by, shaking hands turn ed to Barney Fife handsl
I seeked treatment from different doctors over the years and all they told me was these are called essential tremors because we essentially don't know what causes them.
Into my fifties, essential tremors turned into earthquakes! Some of my meds can accentuate the tremors they say but I'll tell you, when you have to drink coffee with both hands, eat with a spoon and above all else be embarrassed for yourself in public.
I must mention with extreme embarrassment and utter contempt that I have not wanted to shoot or handle a firearm in over 2 years.
My girlfriend wants to learn how to shoot and once she said that I knew it was time to seek some relief from this pestilence.
I pleaded with my current pain management specialist and he recommended Primadone 50mg. 1 tablet 3 times per day. I took first dose that night before bed and could not get out of bed in the morning. It knocked me for a loop! I finally got up after laying for 12 hours. My tremors were so weak that I could hold cup of coffe with one hand and not spill it on my poor dog who loves to sit between my legs
I can't tell you how much this has changed my life, please if you have half a brain like me and suffer with tremors or shaky hands ask your doctor about Primadone.
Thanks for reading.

Thanks for the info, I've had essential tremors for as long as I can remember. Not as bad as yours but, still annoying.
Dr. appt Monday, thanks again.

 

[Will D]

Normally, ET becomes progressively worse as you age; except if you experience a traumatic event such as accident, heart attack, divorce, etc. Then, it ratchets up a notch or two.

 

[KyCarl]

Best wishes I hope everything goes well! I see someone mentioned Suboxone
That one is a high abuse one here in Ky. and probably will be Very hard to get!
It's odd but my younger brother shakes pretty bad. You can't read his signed name
Two hands for his coffee. I'm 5 years older and I'm steady none at all?

 

[Danehunter]

Our son-in-law has essential tremors and has used beer to "calm" them. But since he is a Ph D professor in telecommunication with very critical responsibilities in and out of government he has to watch his alcohol intake.

I'll tell him about Primadone and perhaps it will help him as well.

 

[Will D]

Our son-in-law has essential tremors and has used beer to "calm" them. But since he is a Ph D professor in telecommunication with very critical responsibilities in and out of government he has to watch his alcohol intake.

I'll tell him about Primadone and perhaps it will help him as well.

 

[Will D]

Make sure his neurologist SPECIALIZES in movement disorders; i.e., ET & Parkinson's.

 

[acudaowner]

hello , i am glad that that is working for you. I was going to suggest trying a squeeze ball or squeezing a racket ball or tennis ball to exercise the muscles in your hand .

 

[Will D]

I tried that & other exercise remedies. Nothing worked. Then, I did my homework and found my mother was the cause.

 

[Wolf76]

For clarity, there are different medical procedures for pain and ET. Neuromodulation is used for both, but the devices differ.
Chronic pain sufferers usually have an RF device planted along the spine to disrupt the pain signals.
DBS simulates part of the brain causing the tremor via an electrical wire going into the brain. The device itself is usually planted in the abdomen or under the collar bone (subclavian) . While the procedure sounds bizarre (awake under local anesthetic), its a rather safe. The new DBS devices are adjustable and work very well in combination with medication(low doses). I'll refrain from providing any more advice due to potential legal issues. The part about seeking movement disorder neurologists is a sound recommendation.

 

[Turtle566]

G'day Turtle566
See your up at this hour lol
What part of AUZZIE you in mate
Big question, what's and how does this Suboxone work I've tried via the doctors everything from ketamine down , Been looking with the doctors for something that might help and I've never heard of this suboxone
Cheers

Hi Nowoolies, l'm in Townsville, North Queensland (tropical paradise),l don't sleep much,
Back to Suboxone, it is one of the drug hehab drugs used primarily on the Methedone program here, they found a sideeffect that it controlled pain very effectively, l was lucky enough to get on a trail here, it's now becoming a more mainstream med to replace narcotic analgesics, tastes like ****, as it's dissolved under the tounge, but worth it, l am about to try miracle fruit to get rid of the taste.
Suboxone is a class 8 drug here, so lots of specialists reviews first and very strict monitoring, l don't have the fuzzy head that Oxicontine gave me anymore, good luck with it, l started by getting a referral from my GP,
turtle.

 

[PApa Black]

Hi,
Newish member and very long time lurker who finally has some good info to share.
I am permanently disabled man due to back and nerve damage from life's activities and my own stubbornness.
During my late teen years I began noticing my shaking hands. As the years go by, shaking hands turn ed to Barney Fife handsl
I seeked treatment from different doctors over the years and all they told me was these are called essential tremors because we essentially don't know what causes them.
Into my fifties, essential tremors turned into earthquakes! Some of my meds can accentuate the tremors they say but I'll tell you, when you have to drink coffee with both hands, eat with a spoon and above all else be embarrassed for yourself in public.
I must mention with extreme embarrassment and utter contempt that I have not wanted to shoot or handle a firearm in over 2 years.
My girlfriend wants to learn how to shoot and once she said that I knew it was time to seek some relief from this pestilence.
I pleaded with my current pain management specialist and he recommended Primadone 50mg. 1 tablet 3 times per day. I took first dose that night before bed and could not get out of bed in the morning. It knocked me for a loop! I finally got up after laying for 12 hours. My tremors were so weak that I could hold cup of coffe with one hand and not spill it on my poor dog who loves to sit between my legs
I can't tell you how much this has changed my life, please if you have half a brain like me and suffer with tremors or shaky hands ask your doctor about Primadone.
Thanks for reading.

OMG! This is amazing my mom just got diagnosed with ET about 6 months ago she's 91. Great info here. Thanks all!

 

[crkckr]

I have great sympathy for those affected by ET or anything else that changes how or even if you can shoot. I went through some pretty serious back problems which had me, over a period of 15+ years, taking some pretty serious doses of pain meds. I didn't have any shaking problems but I was clearly much slower. However, I also aquired a case of diabetes from the original treatment (which didn't work). Now I also have "peripheral diabetic neuropathy" which is nerve damage. Basically, it makes my feet tingle. It's like walking on needles. I took one med that took care of it for 3 or 4 years but it suddenly stopped working. We found another one that works but one of the side effects is my hands sometimes shake. It's not all the time but when it hits, it makes things difficult. I already have lousy handwriting but when I'm shaking even I can't read it! Fortunately it goes away after a few hours but I never know when it will return. I will mention that I got a shot of some stuff called Amniofix (from MiMedx) for a problem with an Achilles tendon but it also fixed a few other ortho problems as well, including my back, which I was told would never be fixed. Getting off the pain meds was a real high point. Unfortunately, it only works on orthopedic problems (it is not a stem cell shot but is in the same family). Now if I could just get rid of the shaking! Hrrumph, Golden Years my rear end!
Cheers,
crkckr