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-   -   Do you or someone you know shake? Essential Tremors (http://www.butchfemmeplanet.com/forum/showthread.php?t=4493)

princessbelle 01-23-2012 08:02 PM
Do you or someone you know shake? Essential Tremors
 
This is definitely the most difficult post i have ever made. I've thought about doing it for awhile, but just couldn't muster up the courage to do it.

I have essential tremors. For those of you who don't know what that is, think...."Katheryn Hepburn" and remember her head shaking. That's what she had. Mine started in my 30s with a head jerk. It has progressed to a persistent "no no" motion that i cannot control. It's not there ALL the time, but it is there.

I was petrified going to the reunion thinking someone would say something....no one did. Even though it is not there all of the time, i'm sure it was some of the time. I thankfully did not get one comment. That's not so common in the general population. Not many days go by that i don't have someone ask me if i have Parkinsons or if i'm answering "no" to something they just said to me.

Here is a little bit about the disease:

Definition:

Essential tremor is a disorder of the nervous system that causes a rhythmic shaking. Essential tremor can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you try to do simple tasks, such as drinking from a glass, tying shoelaces, writing or shaving. Essential tremor also may affect your head, voice, arms or legs.

In a study of individuals with ET, results of an advanced imaging technique known as positron emission tomography (PET), which examines the biochemistry of the brain, suggested an abnormality in the olivo-cerebellar tracts of the brain. In addition, PET testing in patients with essential tremor reveals increased activity in one brain region known as the cerebellum even while at rest, a finding that is consistent with the cerebellum having an important role in the generation of tremor.

The psychosocial effects of ET may be embarrassing and debilitating. ET may eventually affect the patient's ability to perform certain work-related tasks; interfere with activities of daily living; or lead to withdrawal from social activities and interactions due to embarrassment.

I am so self conscious of it. I've went to bed many nights crying because someone stared at me.

My father had it, it affected his gait and his arms mostly. There is a 50% chance a child will eventually get this if one of their parents has it. So far, my kids show no symptoms. But, i didn't either until i was in my 30s. It can affect your head, arms, voice and hands. Usually the hands and arms. I am lucky so far, and it just affects my head. But, i worry. Being a nurse, if my hands are affected, i'm in deep trouble. I watch them constantly and am petrified they will start shaking...so far, so good.

There are some treatments out there. Meds, beta blockers (which i used for 10 years and they worked great but lowered my blood pressure so low, i started fainting so i had to come off them) Anti-seizure meds and meds such as Xanax and Valium. They help to some degree, but not totally. There is also brain surgery where they insert an electrode in your brain. It's risky and it petrifies me to think about doing that.

Two things I hope that will come of this thread....

I am so very curious to know if anyone else here has this or a family member and maybe we can support each other. Maybe i'm not alone. Maybe it would be healthy to talk about this. Maybe i can help comfort another person who has to go through some of the same embarrassing comments and questions that i go through.

Number two.....

My mom called me tonight and she was excited. There is a breakthrough with the tremors and it is neurosurgery without being invasive. It was on ABC News.

Here's the link

http://abcnews.go.com/Health/patient...4#.Tx4LfoHnPR4


Thought i would share and see if there is someone else "out there" that may be very happy to hear about this or just wanna talk.

justkim 01-23-2012 08:07 PM
Just saw this on our local news and thought about how far the world of medicine has come.

princessbelle 01-23-2012 08:12 PM
Quote:
Originally Posted by justkim (Post 511744)
Just saw this on our local news and thought about how far the world of medicine has come.
Yes, you are right and it said that these "waves" may be a breakthrough for all sorts of things including Cancer.

I'm very optimistic. Very hopeful. I'll try and keep on top of it and for sure i'm going to ask my doc about it.....soon.

justkim 01-23-2012 08:26 PM
My foster sons had many speech issues and the Occhealth people used a swing type thing to help develop the inner ear or something like that. The swing looked like a tire that was connected to the ceiling with three ropes and it swung in a pendulum motion, not so much a circular motion... if that makes sense. It is also suppose to help people who have balance issue....
Sometimes stuff just stays in my head and then the knowledge comes pouring out...

JAGG 01-23-2012 08:39 PM
Quote:
Originally Posted by princessbelle (Post 511742)
This is definitely the most difficult post i have ever made. I've thought about doing it for awhile, but just couldn't muster up the courage to do it.

I have essential tremors. For those of you who don't know what that is, think...."Katheryn Hepburn" and remember her head shaking. That's what she had. Mine started in my 30s with a head jerk. It has progressed to a persistent "no no" motion that i cannot control. It's not there ALL the time, but it is there.

I was petrified going to the reunion thinking someone would say something....no one did. Even though it is not there all of the time, i'm sure it was some of the time. I thankfully did not get one comment. That's not so common in the general population. Not many days go by that i don't have someone ask me if i have Parkinsons or if i'm answering "no" to something they just said to me.

Here is a little bit about the disease:

Definition:

Essential tremor is a disorder of the nervous system that causes a rhythmic shaking. Essential tremor can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you try to do simple tasks, such as drinking from a glass, tying shoelaces, writing or shaving. Essential tremor also may affect your head, voice, arms or legs.

In a study of individuals with ET, results of an advanced imaging technique known as positron emission tomography (PET), which examines the biochemistry of the brain, suggested an abnormality in the olivo-cerebellar tracts of the brain. In addition, PET testing in patients with essential tremor reveals increased activity in one brain region known as the cerebellum even while at rest, a finding that is consistent with the cerebellum having an important role in the generation of tremor.

The psychosocial effects of ET may be embarrassing and debilitating. ET may eventually affect the patient's ability to perform certain work-related tasks; interfere with activities of daily living; or lead to withdrawal from social activities and interactions due to embarrassment.

I am so self conscious of it. I've went to bed many nights crying because someone stared at me.

My father had it, it affected his gait and his arms mostly. There is a 50% chance a child will eventually get this if one of their parents has it. So far, my kids show no symptoms. But, i didn't either until i was in my 30s. It can affect your head, arms, voice and hands. Usually the hands and arms. I am lucky so far, and it just affects my head. But, i worry. Being a nurse, if my hands are affected, i'm in deep trouble. I watch them constantly and am petrified they will start shaking...so far, so good.

There are some treatments out there. Meds, beta blockers (which i used for 10 years and they worked great but lowered my blood pressure so low, i started fainting so i had to come off them) Anti-seizure meds and meds such as Xanax and Valium. They help to some degree, but not totally. There is also brain surgery where they insert an electrode in your brain. It's risky and it petrifies me to think about doing that.

Two things I hope that will come of this thread....

I am so very curious to know if anyone else here has this or a family member and maybe we can support each other. Maybe i'm not alone. Maybe it would be healthy to talk about this. Maybe i can help comfort another person who has to go through some of the same embarrassing comments and questions that i go through.

Number two.....

My mom called me tonight and she was excited. There is a breakthrough with the tremors and it is neurosurgery without being invasive. It was on ABC News.

Here's the link

http://abcnews.go.com/Health/patient...4#.Tx4LfoHnPR4


Thought i would share and see if there is someone else "out there" that may be very happy to hear about this or just wanna talk.
No one said anything because we love you just the way you are!!! You're perfect to us Belle!!!!!! =)

princessbelle 01-23-2012 08:41 PM
Quote:
Originally Posted by JAGG (Post 511770)
No one said anything because we love you just the way you are!!! You're perfect to us Belle!!!!!! =)
Stop that!!!!!!

Not that i wasn't crying enough already!!!!!

lol.

Thanks Jagg, you are precious.

:|

Rockinonahigh 01-23-2012 08:52 PM
For years I have had restles leg problems and took flexerill 5mg to help with it,now as I have gotten a bit more down the road I am haveing some twitching in my arms neck and shoulders,it usely happends when im tired or late in the day.I really havent said anything to my doc about it,not long ago I got this pain in my shin bone like being stabed witha 18 gauge needle.I have an appointment with my doc in Febuary with an orthopedic and I am going to see what she says,I have mentioned it to my medicaid doc and he says its cause of my injuries in my spine and neck,he may be right.There are times I dont have anything happen then bam its back in some way.Im also takeing meclizine for an inner ear thing that I have delt with since I was in knickers,in reality its more of a nusence but can be embarrasing when it pops up out of nowhere.The folks I know who are aware of it and the quirkey things that happen just ignore it,the ones who make comments or look at me strange I nignore them.The strange thing is sitting totaly still is near impossable,unless I am reading a book or doing something that keeps my mind locked in to it.
I am not makeing lite of this at all,as it can be serious in some people,I have worked with folks with nervous problems so I take it in stride.Ive also wondered if I am developing some othe nervous thing like parkenston.

Rockinonahigh 01-23-2012 08:54 PM
Quote:
Originally Posted by JAGG (Post 511770)
No one said anything because we love you just the way you are!!! You're perfect to us Belle!!!!!! =)
I will second that,Miss Bell u r awsome.

Novelafemme 01-23-2012 08:59 PM
Quote:
Originally Posted by princessbelle (Post 511742)
This is definitely the most difficult post i have ever made. I've thought about doing it for awhile, but just couldn't muster up the courage to do it.

I have essential tremors. For those of you who don't know what that is, think...."Katheryn Hepburn" and remember her head shaking. That's what she had. Mine started in my 30s with a head jerk. It has progressed to a persistent "no no" motion that i cannot control. It's not there ALL the time, but it is there.

I was petrified going to the reunion thinking someone would say something....no one did. Even though it is not there all of the time, i'm sure it was some of the time. I thankfully did not get one comment. That's not so common in the general population. Not many days go by that i don't have someone ask me if i have Parkinsons or if i'm answering "no" to something they just said to me.

Here is a little bit about the disease:

Definition:

Essential tremor is a disorder of the nervous system that causes a rhythmic shaking. Essential tremor can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you try to do simple tasks, such as drinking from a glass, tying shoelaces, writing or shaving. Essential tremor also may affect your head, voice, arms or legs.

In a study of individuals with ET, results of an advanced imaging technique known as positron emission tomography (PET), which examines the biochemistry of the brain, suggested an abnormality in the olivo-cerebellar tracts of the brain. In addition, PET testing in patients with essential tremor reveals increased activity in one brain region known as the cerebellum even while at rest, a finding that is consistent with the cerebellum having an important role in the generation of tremor.

The psychosocial effects of ET may be embarrassing and debilitating. ET may eventually affect the patient's ability to perform certain work-related tasks; interfere with activities of daily living; or lead to withdrawal from social activities and interactions due to embarrassment.

I am so self conscious of it. I've went to bed many nights crying because someone stared at me.

My father had it, it affected his gait and his arms mostly. There is a 50% chance a child will eventually get this if one of their parents has it. So far, my kids show no symptoms. But, i didn't either until i was in my 30s. It can affect your head, arms, voice and hands. Usually the hands and arms. I am lucky so far, and it just affects my head. But, i worry. Being a nurse, if my hands are affected, i'm in deep trouble. I watch them constantly and am petrified they will start shaking...so far, so good.

There are some treatments out there. Meds, beta blockers (which i used for 10 years and they worked great but lowered my blood pressure so low, i started fainting so i had to come off them) Anti-seizure meds and meds such as Xanax and Valium. They help to some degree, but not totally. There is also brain surgery where they insert an electrode in your brain. It's risky and it petrifies me to think about doing that.

Two things I hope that will come of this thread....

I am so very curious to know if anyone else here has this or a family member and maybe we can support each other. Maybe i'm not alone. Maybe it would be healthy to talk about this. Maybe i can help comfort another person who has to go through some of the same embarrassing comments and questions that i go through.

Number two.....

My mom called me tonight and she was excited. There is a breakthrough with the tremors and it is neurosurgery without being invasive. It was on ABC News.

Here's the link

http://abcnews.go.com/Health/patient...4#.Tx4LfoHnPR4


Thought i would share and see if there is someone else "out there" that may be very happy to hear about this or just wanna talk.
I was gonna say the same thing as JAGG did, Belle!! Kudos to you for having the courage to share. I know we've never met but I think you are the darned sweetest person on the Planet!! And even if you were nodding "no" at me, I'd take it as a sign to keep my mouth shut...which is generally a good idea for me! ;)

I will keep you in my thoughts and let you know if I hear anything.

XOXO, Novela

clay 01-23-2012 09:01 PM
Belle......I am one of those who wouldn't "see it" either...as I look on the inside of a person..at their heart, their soul...
I dated a woman a coupl eyears ago...who was a cutter many years ago...she had prominent scars along inner arms and at sides of neck...I never mentioned it..instead always telling her incredibly beautiful she was...one day she looked at me and asked.."how come you have never said a word about the scars..i said "because I didn't see them, I was so busy looking inside at your heart & soul...she broke out in tears..and I am like..what??? did I say something worng..she said no you said everything right..YOU are a beautiful soul....ETA..she will call me along and ask me to please take her back....that no one had ever treated her like I did....but I can't...she loves ETOH too much!
I have to agree with Jagg...you ARE such a beautiful being..and THAT is what all the Planeteers see...your radinace..your loving soul..your spirit and heart....grin

princessbelle 01-23-2012 09:08 PM
Quote:
Originally Posted by Rockinonahigh (Post 511789)
For years I have had restles leg problems and took flexerill 5mg to help with it,now as I have gotten a bit more down the road I am haveing some twitching in my arms neck and shoulders,it usely happends when im tired or late in the day.I really havent said anything to my doc about it,not long ago I got this pain in my shin bone like being stabed witha 18 gauge needle.I have an appointment with my doc in Febuary with an orthopedic and I am going to see what she says,I have mentioned it to my medicaid doc and he says its cause of my injuries in my spine and neck,he may be right.There are times I dont have anything happen then bam its back in some way.Im also takeing meclizine for an inner ear thing that I have delt with since I was in knickers,in reality its more of a nusence but can be embarrasing when it pops up out of nowhere.The folks I know who are aware of it and the quirkey things that happen just ignore it,the ones who make comments or look at me strange I nignore them.The strange thing is sitting totaly still is near impossable,unless I am reading a book or doing something that keeps my mind locked in to it.
I am not makeing lite of this at all,as it can be serious in some people,I have worked with folks with nervous problems so I take it in stride.Ive also wondered if I am developing some othe nervous thing like parkenston.
Definitely get it checked out.

Just to be clear...I DO NOT have Parkinson's. There are many people who do. There are many diseases that are not diagnosed correctly at the beginning and it can cause them to progress when they don't have to.

I have found with my shaking that people i am around a lot get, i suppose, used to it and don't notice it that much. People who i just meet, however, do notice it. Stress has a lot to do with it too.

You are on the right track. Take ownership of your symptoms and your body. Research, study and demand tests be done that you know would benefit you.

Good luck to you and keep us posted.

clay 01-23-2012 09:12 PM
Belle, I have a friend who was at her doctor's for something, and the doc noticed a fine tremor of her left arm..and asked "how long have you had that" and she answered, I don;t recall what she said..anyway she was diagnosed with MS..and had to go out on disability..as she was an SLP and was fearful of making a wrong decision for someone to get any kind of feeding tube....she gets a shot every night..I have to ask her what the name of it is...anyway...I know she is dx.'ed with one thing and you with another...jus' was sharin'
YOU have nothing to be embarassed about..we all love you totally!!!

princessbelle 01-23-2012 09:19 PM
Quote:
Originally Posted by Novelafemme (Post 511796)
I was gonna say the same thing as JAGG did, Belle!! Kudos to you for having the courage to share. I know we've never met but I think you are the darned sweetest person on the Planet!! And even if you were nodding "no" at me, I'd take it as a sign to keep my mouth shut...which is generally a good idea for me! ;)

I will keep you in my thoughts and let you know if I hear anything.

XOXO, Novela
You know...funny thing about that.

I've always thought that if i was destined to "nod", it keeps me farther away from trouble since i nod "no". If i nodded yes, i may get into some things i didn't plan on.

Dangerous part though....i would never go to an auction. A nod down here in the south and you can wind up owning a head of cattle or worse.

Strange thing is....all my relatives who shake, which is most of them, all shake "yes". I'm the only "no" in the family.

Leave it to me to be different :)

And ya'll thanks for all the love here. I do appreciate the support and i'm very happy that i finally had the guts to talk about this.

xoxoxoxoxo


Rockinonahigh 01-23-2012 09:28 PM
Quote:
Originally Posted by princessbelle (Post 511807)
Definitely get it checked out.

Just to be clear...I DO NOT have Parkinson's. There are many people who do. There are many diseases that are not diagnosed correctly at the beginning and it can cause them to progress when they don't have to.

I have found with my shaking that people i am around a lot get, i suppose, used to it and don't notice it that much. People who i just meet, however, do notice it. Stress has a lot to do with it too.

You are on the right track. Take ownership of your symptoms and your body. Research, study and demand tests be done that you know would benefit you.

Good luck to you and keep us posted.
I will but u do take care of u,this place is better with u being hear.

princessbelle 01-23-2012 09:34 PM
Quote:
Originally Posted by June (Post 511838)
Damnit, I had this long post typed out and I hit the wrong button.

I noticed it, but I just thought/think it's part of who you are.

No more crying about it.

There.

OK. Deal. :)

BullDog 01-23-2012 09:39 PM
It would be interesting to hear from others with similar experiences and I am interested to learn more about the breakthrough.

I hardly ever notice Belle's head shaking and when I do I don't care because she says it isn't dangerous to her health.

You are beautiful just the way you are baby. <3

princessbelle 01-23-2012 09:46 PM
Quote:
Originally Posted by BullDog (Post 511845)
It would be interesting to hear from others with similar experiences and I am interested to learn more about the breakthrough.

I hardly ever notice Belle's head shaking and when I do I don't care because she says it isn't dangerous to her health.

You are beautiful just the way you are baby. <3
Thank you sweetheart. You are right, at least i'm not gonna die from it.

Could be worse things.

Way way worse things.

I am very lucky in ALL aspects of my life. <3

princessbelle 03-10-2012 05:02 PM
Thanks to everyone who has written to me privately here and on FB about having these tremors. I've heard from about 7 people who suffer with shaking and about 4 have been diagnosed with exactly what i have.

Update:

Went to Doc last week due to my back but i mentioned that new treatment with "waves" sent to the brain that has actually totally stopped the shaking in people with Essential Tremors. He said he has been watching this closely as well and is a member, so am i, of the National Essential Tremor Foundation. He says it is too early to request this treatment, but to hang in there. He said another year and it should be a go.

That's good news for me, and for anyone else that shakes due to this disease. I will continue to update this thread with more research and more information as i find it. Feel free to do so yourself if you want, or private messaging me is fine of course.

Hang in there shakers, help may just be around the corner!!!!!


:praying::vigil:

Bella~Vita 03-10-2012 05:33 PM
Quote:
Originally Posted by princessbelle (Post 544484)
Thanks to everyone who has written to me privately here and on FB about having these tremors. I've heard from about 7 people who suffer with shaking and about 4 have been diagnosed with exactly what i have.

Update:

Went to Doc last week due to my back but i mentioned that new treatment with "waves" sent to the brain that has actually totally stopped the shaking in people with Essential Tremors. He said he has been watching this closely as well and is a member, so am i, of the National Essential Tremor Foundation. He says it is too early to request this treatment, but to hang in there. He said another year and it should be a go.

That's good news for me, and for anyone else that shakes due to this disease. I will continue to update this thread with more research and more information as i find it. Feel free to do so yourself if you want, or private messaging me is fine of course.

Hang in there shakers, help may just be around the corner!!!!!


:praying::vigil:
Belle you are very brave to have started this thread . I too suffer from tremors and I also have the shaking yes in my head. It is embarrasing especially in public or if I'm around people who don't know me, will ask me 'why are you shaking?' If I get nervous I get them even worse but the people in my life know what's going on and accept it. Just wanted to tell you 'we are not alone sweetgirl' .(f)


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