Essential tremor

Brain and nerves
1

Hello everybody.

I have essential tremor that mainly affects my hands particularly my left hand. This becomes worse during times of stress and makes it difficult to deal with such situations as the shaking is so bad. 

In in normal situations you can see that my left hand has a slight shake. I do not notice this but sometimes my colleagues and friends do. 

My job involves, on occasion, having to deal with people who may become angry, upset, and agressive. I have developed coping techniques to deal with these situations.

Despite the use of coping techniques, my tremor has held me back professionally and in general life. I would like to deal with such situations without experiencing the tremor.

I discussed this with a doctor many years ago and he said that if there was a severe impact on my life I should consider medication. I chose not to take that option and have attempted in the meantime to live with the condition.

I would like to know if anyone has any advice on medications that would be appropriate for essential tremor and whether these could be taken long term.

It is also important to add that my mother has the condition which appears to be worsening as she gets older. She is also not taking any medication.

Any help would be greatly appreciated.

Many thanks.

2

Hi Hatterlee

My husband has Parkinson's (16 years now), and I write about it and other medical matters (mainly neurological). So I know some....

I'm assuming your mother's been assessed for Parkinson's and it's been ruled out?

What drugs are they wanting you to take for your Essential Tremor? I guess you know that any trmor is exacerbated by stress (that can also include excitement as well as pressure)? Do those you deal with in your work know that you have Essential Tremor - sounds like you may deal with HR or something that brings you in close proximity with others, so there's no harm done letting them know; you may already have done this.

 

3

My mother has a head tremor and I have dystonia and dystonic tremor that affects all my body incl my diagraphm and lower jaw. The tremor is an action tremor so is apparent when I use my muscles in any way. 

I developed this condition about 18 months ago. Before I started on meds I had a few mishaps e.g fell down the stairs twice, burnt my legs spilling hot drinks, wasn't safe driving etc. my condition is also affected by stress and dystonia causes anxiety so I also take sertraline.

i have been taking clonazepam ( for dystonia ) and propranolol ( for tremor) prescribed for me by a neurologist who specialises in movement disorders. 

It it has changed my life in that my tremor is vastly diminished and I can hold a drink without spilling it etc. I'm also back to playing piano,

i believe there are quite a few other meds that help tremor for e.g topimax

i would advise asking your GP for a referral to a specialist neurologist to get the right treatment for you. 

All the best

 

4

Hi Parkinsonswife

Thank you for your response and advice.

My mother has not been assessed for Parkinson's. She is reluctant to visit the doctors despite the worsening symptoms. 

I cannot remember the drugs that the doctor recommended. I have carried out some research on the Internet and from what I have found there are a number of drugs that could be used.

My colleagues are aware that I suffer from essential tremor and are very supportive. My role includes a considerable amount of time dealing with the general public. I feel my tremor hinders me most when I am in these situations.

 

5

Hey Hatterlee

Personally (not wanting to alarm you at all!), I'd get your mother reviewed. There is some evedience that ET can lead to PD sometimes.

Like Tezes said, some drugs can really be a boon! If you come accross which were chosen for you, lemme know.

The general public you deal with; are they face to face or via some other medium. If it's the first, mentioning this (as a sort of 'off the cuff' opener) might help them be in more control so you don't have to be the brunt of their angst?

Good luck!

6

Hi again

I agree tremor symptoms can be similar to lots of conditions. My Neuro has to rule out other condition so one of the medical tests I had before I was finally diagnosed with Dystonia was for Parkinson's, its a type of brain scan called a DaT Scan. 

I am am a community nurse and see patients with mental health, behavioural and disability issues so sympathise. It can be embarrassing and I was very conscious of my tremor especially around patients and colleagues at work, I felt like people would think I had a problem with alcohol  or that I was a nervous wreck. I don't know how I coped without the medication. 

7

Hi Hatterlee,

Have you had this checked by a Consultant Neurologist? An Essential Tremor, can easily be mis-diagnosed by many Neurologists. There are many types of Neurologists, most of them know the main issues, however some specialise in certain areas only, by finding the right one can make a big difference to how what treatments are available. I would takes “Tezes” advice – and get a referral to see a Neurologist ASAP, if not change doctors to get a referral. I am not a specialist in anyway, I have spent years in pain, in a twisted body frame, so imagine a Physiotherapist trying to un-twist muscles which spasm constantly. I cannot stand for more than 10-15 seconds without being in chronic pain, from a twisted stance.

There are many Consultant Neurologists that misdiagnose many conditions especially of a dystonic nature. It took nearly 2 years and many neurologists to eventually diagnose me back in the late 80’s. Eventually, I was diagnosed with Focal Segmental Dystonia, which was later changed to Torsion Dystonia, and then just over year ago to Generalized Dystonia. The reason for difficult diagnosing back in my time was because I was only the 7th known case in the UK, which took a USA Professor of Neurology Dr. David Marsden and teams of Neurologists to eventually find out what was wrong with me.

My main consultant now is the British President of Neurology Dr. Geraint Fuller, whom has a very high reputation and has cured a woman with MS, which was noted in national newspapers. He has helped me out more than anyone, however my own doctor is actually married to another Neurologist, which I guess gives me more advantages over the standard person.

Dystonic disorders become worse with panic, anxiety, anxiousness and stress – the uncontrollable ‘shaking’ becomes much worse, and I find myself changing clothes many times a day from spillages, drinking (even using non-spillage cups), etc.

I have 6 Botulinum Toxin Injections in my spasmodic torticollis (basically the neck, and shoulder, this is done every 10 weeks in hospital). It is very painful, not just the injections but the chronic pain you suffer from this area. Muscles become twisted and tighten, I am on Madopar as well for Dystonia, along with Clonazepam and Orphenadrine. On top of all this, I have to see Neurophysiotheropists weekly, treating the twisting in and roll on my left foot, upper and lower parts off the body. A Neurophysiotheropist is a specialised Physiotherapist that helps people that have damaged nerve systems from accidents or a condition that is stopping you from being independent.

Dystonic behaviour usually progresses to worse conditions like myself, and have further nerve system problems that stem back with it. In my case I have Epileptic Seizures and Functional Episodes (note there are 28 variations), many people get these two disorders mixed up. A patient with Epilepsy produces a huge “overload” of electrical pulses in the brain which causes the muscle spasms, etc. However, a person with a Functional Seizure produces no electrical pulses, and the patient is aware of where they are and what is going on around them, but they have no way of communicating with anyone. The main cause of this type of attack is panic, anxiety, etc on huge levels.

Hope this helps, many people can relate to my detailed posts, if you find any part that is interesting, let me know and I can PM you further details of specialised Neurologists in the UK.

Regards,

Les.

8

It is on a face to face basis. I will mention it as an 'off the cuff' opener and see how that goes. I know, however that this will not work with all my clients.

I will try to persuade my mother to go to the doctors. I was unaware that ET could lead to PD.

Thanks again for your help.

9

Hi Tezes,

I feel the same way you felt. Someone once remarked to me, 'had I been drinking too much'. I have also had comments about being scared or nervous. I am very confident in my job and am certainly not scared or nervous.

I very much appreciate your advice regarding the neurologist. I plan to book an appointment with my doctor and request a referral.

I will update any progress on the thread.

Thank you.

10

Hey Les

First, I must applaud you on your candidness. I must say that Dystonia, although not necessarily neurodegererative like Parkinson's, is a truly awful disease. My empathy goes out to you, for what thet means.

For you, Hatterlee - it's something to consider, but....not necessarily yet. But a point Les brought up is essential: the CORRECT Neurologist! To wade through the quagmire of realistic diagnosis, you have to find the one in your field! IF you feel that your present Neurologist (you can just plum ask him!) has no paricular specialty, ask for a referral to a Dystonic or Parkionson's or Essential Tremor one!! Good catch, Les!

11

Hi Les63,

Thank you so much for taking the time to reply to my post.

I will definitely be taking Tezes advice and will be asking my doctor for a referral to a neurologist.

Will keep you updated.

12

My Husband  Temor started two year ago  his left Hand and Fingers and the Arm Terrible shaking  He was Diognosed with the Illness called  Choreoathetos Chorea  the Medication he has to take does stop all Tremor but sadly if he is Distressed the Tremore in his hand will start  

13

I have essential tremor (diagnosed by a professor of neurology at a top London hospital in 1980s). It now affects my head and both hands.

ET tends to run in families and my mother and her sister also had it so I I think it is more likely that your mother also has ET than Parkinsons.

I have been prescribed Propranolol but prefer not to take it because of side effects so I cope without medication. I find that if I introduce myself to strangers as soon as I meet them they realise that I am a normal human being and we can all relax.

I have problems with some tasks - drinking, pouring, using sissors, serving food with a spoon, eating soup, etc but hey, there's a way round most things -use two hands for your cup/glass, ask someone to help, stabilise your hand by holding your arm firmly against your body, buy a little tray so you can carry two cups, order a different starter.............Be straight with your employer. ET is a  B nuisance but not the end of the world. It will get worse over time but it's not life threatening. There are worse diagnoses. Have a great life!

14

I try to keep out of situations myself that may give me stress. However my Partner, who I believe has it - 9though he's never been concerned enough to have it diagnosed) - has related how at work previously (call centre) a bad stressfull call could result in his hand shaking up to the elbow - had to use the other arm to control it.

he did find the label I was able to give him useful in his previous job - where he had contact with sometimes obnoxious people/customers - he would say it's ET but don't worry it's hereditary not contaigous.

So don't wait for the alchohol comment - say it's ET - what's the big secret, don't be ashamed or embarrased be upfront.