Essential tremor

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.

 

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

 

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. 

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.

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  

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!

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.