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Original poster

essential tremor

26 replies

chocolateegg · 11/04/2012 17:09

I had this diagnosed at 16 and am now in my early forties. Even now I get fed up of people pointing it out and wondered whether anyone knew of any effective treatments for this. I have been mostly prescribed propanalol which only has minor improvements. Unfortunately it goes hand in hand with anxiety though I met someone with it recently who doesn't get anxious at all.

Am interested in getting as much info as possible, especially treatments available in other parts of the world eg: USA (am in the UK)

Thankyou

OP posts:

nightcat · 11/04/2012 18:20

have you had your vit D checked? My friend's ds has a tremor that gone away on vit D (no idea whether it was essential or not though)

Original poster

chocolateegg · 11/04/2012 19:57

My tremor is probably hereditary but found some interesting info on vitamin D. nightcat thanks for your post, will try to get vit d levels checked.

OP posts:

jjazz · 11/04/2012 20:11

there was a 40 year old man with this on embarassing bodies on Mon night this week. He had severe tremour and had had an implant (like a pacemaker) in his brain. He switched it off to show how severe he was and it was an exterme difference. He had whole body involutantry movement without it like a severe parkinsons patient. May be worth looking into.

Original poster

chocolateegg · 11/04/2012 20:30

jjazz I didn't see that one. I have heared of the implant but didn't know if they did it in this country.

What i wouldn't do to not shake, even for one day.

I feel more sad that there is a 50% chance one of my kids will have it.

OP posts:

NCIS · 11/04/2012 22:02

Mine is treated with propranolol. I'm on 80mg per day at the moment which seems to work, mine is also hereditary. Not sure what to suggest if this does not work. What dose were you on?

Original poster

chocolateegg · 11/04/2012 22:23

I take 40mg but my neurologist said it can lose effectiveness over time so I try to take it only when needed though it is not working very well. I have had anxiety so don't know if this is making it worse.

OP posts:

Original poster

chocolateegg · 11/04/2012 22:26

NCIS are you very self concious about your tremor? Do you have children, and have any of them shown signs of it?

OP posts:

NCIS · 11/04/2012 22:29

I was given 10mg tablets and told to up the dose until I found one that worked. I was told I could take it for the rest of my life but might have to up it a bit over time. So far 80mg is fine and I can miss the odd couple of days with no tremors.
I find mine gets much worse if I'm upset or cross but so long as I take the pills it's fine.

AuntFini · 11/04/2012 22:32

I have this too and I feel your pain with regard to people pointing it out! I hate it, people always think I'm nervous etc and I'm not. I can be very self-conscious and I find it quite annoying at times. It's not incredibly severe so I feel as though I can't really complain, but it can get me down.

AuntFini · 11/04/2012 22:35

Also I really love singing but I've developed a tremor in my voice and now I can't sing. Not a big deal but I really used to love it.

NCIS · 11/04/2012 22:38

AuntFini Have you tried medication? I didn't really want to try it until I started a job where it mattered. You can't stick needles into people when your own hand is shaking.
It is worth it simply for a better quality of life.

Original poster

chocolateegg · 11/04/2012 22:39

People can be so bloody insensitive. I am tempted to say I have Parkinsons which might just shut them up. I even had an employer give me something with her hand shaking and she thought it was funny. She was a doctor.

OP posts:

NCIS · 11/04/2012 22:42

chocplate egg I was as I have a very public job ( emergency ambulance) and it is worse when I concentrate. Now I'm properly medicated, it doesn't happen. I really would advocate upping your dose, obviously under medical supervision, as it makes such a difference.
My daughter shows some signs of it, again if she's tired or stressed(she's 20) but I don't let it worry me and have told her that she can get tablets if and when it bothers her.

AuntFini · 11/04/2012 22:50

My doctor never mentioned any kinds of medication. I'm 24 and got diagnosed at 14, and have just got on with it since!

However I am training to be a teacher and the ability to write on the board would be very useful.

What is it that you can take?

NCIS · 11/04/2012 22:52

Propranonlol, it's a beta blocker. Slows your heart rate down a bit too and reduces your blood pressure which is an added benefit for me.

TunipTheVegemal · 11/04/2012 22:56

I have this. Was on propranolol for a few years but stopped when I got pregnant and didn't go back onto it because as a SAHM it doesn't matter so much - at work the thing where people thought I was nervous bugged me, when I met new people and noticed them staring.
If it is stopping you do something you should definitely consider medication.

AuntFini · 11/04/2012 22:58

Thanks NCIS I'll look into it. I feel like I don't know anything! I was just a child really when it was diagnosed and I didn't ask them anything. I don't know why medication wasn't mentioned at the time because they did note that my tremor was at that point very pronounced.

I've just read on NHS direct that it worsens with age. Does everyone else have experience of this?

TunipTheVegemal · 11/04/2012 22:59

Mine worsened noticeably between 20 and 30 but has if anything got less bad from 30 to 40.

NCIS · 11/04/2012 23:00

Mine has definitely got worse with age as did my Mother's. I really noticed it when I had to complain in a shop and was a bit stressed and couldn't sign my name on the form. That's what really made me get help as well as starting my new job.

AuntFini · 11/04/2012 23:02

Yes I can't sign my name on forms either. I'm definitely going to speak to a doctor!

My mum has actually really recently developed a tremor due to some medication she has to take, and she has finally realised what a pain it's always been for me.

TunipTheVegemal · 11/04/2012 23:03

wow, NCIS, that makes me realise I used to have that kind of thing happen up to about 30 but haven't had for years!
I remember going to get money out of a cashpoint and giving up because I simply couldn't physically key my PIN in.

NCIS · 11/04/2012 23:10

I remember my Mum being unable to pour a cup of tea. Horrible to watch but she thought that she just had to put up with it. At least I know that help is available.

Original poster

chocolateegg · 12/04/2012 17:05

Unfortunately medication is not working for me. I did read somewhere that they use different types of medication in the states. Will have to go back to the doctor.

OP posts:

deepbreath · 23/05/2012 14:58

I have a neuro condition, the neurologist thinks it may be essential tremor but I am still having tests. I have tried clonazepam and propranolol (not at the same time) but after putting up with unpleasant side effects, I had to stop taking them. That doesn't mean that they wouldn't work for other people though.

I get muscle twitches all over the place, and once a muscle starts twitching it will not stop for days or weeks. At the moment, it's getting tricky to manage - I've been told that extremes of temperature can make this worse. My right leg in particular looks like something is constantly crawling around in my calf muscle!

Some people with essential tremor say that a small amount of alcohol helps to reduce the tremor, but I haven't tried that myself.

tunaday · 23/05/2012 20:20

My late dad had it and it got worse with age. Particularly when he was in company it was dreadful and he could barely get his food onto his fork and would often launch drinks across the room. Very embarrassing for him. One of my brothers also has it and his is also getting worse (he's mid-50s). Neither my oldest brother not I have it though. My brother's also gets more noticeable when he's stressed or is being watched and he dreads being asked to sign anything if people are looking. He also gave up going to drawing classes about 5 years ago. I had no idea there was any medication for it. He was always told to try a glass of wine to steady his hands. He's in Germany though so maybe things are different there. My Dad was never offered anything for it here though. He was also told to try a glass of wine as it might relax the muscles. It didn't help him though. Will definitely tell my brother about propranalol

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