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Anyone know anything about tremors?

(10 Posts)
TheAccidentalExhibitionist Thu 26-Dec-13 20:24:44

This will probably out me but a few months ago I had two episodes a month apart where I had extreme flu like symptoms with exhaustion, speech difficulties, voice loss, memory loss and various joint pain. I also developed a nodding head tremor and lost my balance plus lost fine motor control in my hands. Most things are gradually coming back and the pain has gone but I'm left with the fatigue, tremor, balance issues and loss of fine motor control.

I'm not in the UK and feel like I've had no answers in this country. A brief couple of visits to a neurologist who did some blood tests and diagnosed me with an essential tremor. I think that diagnosis completely ignores all my other symptoms and I'm worried that I'm not completely recovering.

Can anyone shed any light or offer any experience or advice?

TheAccidentalExhibitionist Fri 27-Dec-13 16:03:02

Anyone? No one else with tremors?

deepbreath Sat 28-Dec-13 17:37:48

I was diagnosed with Essential Tremor just over a year ago, I'm 39. Like many people, I don't "just" have a bit of a shake in my hands or head. Many articles online say that this isn't really anything to be bothered about and to just get on with things, and it was only after reading the recently updated article on Wikipedia that I realised a lot of my stranger symptoms could well be due to Essential Tremor. Before that, I honestly thought I had been misdiagnosed or fobbed off as there was so much more going wrong for me.

I am always in pain as I tend to actively brace against my tremor to try to stop it from being so obvious. Maybe this could be something that you do too?

Have you tried any medication to reduce your tremor? I tried Propranolol and a couple of other things, but for me I found that the side effects were too much for me and I still shook anyway.

If you use Facebook, there is a UK based support group that is quite down to earth. There are people that use that group from around the world, so I'm sure you will be made welcome if you wanted to join.

TheAccidentalExhibitionist Sat 28-Dec-13 19:06:10

Thanks for replying Deepbreath it's good to hear from you. My tremor is pretty bad but fairly well managed with a hefty dose of Propanolol. It's mostly noticeable now when I'm tired or driving. I think the balance and loss of fine motor control are down to the tremor. My body just seems shaky, the propanolol makes me feel more solid if that makes sense. Trouble is that propanolol adds to my fatigue enormously.

I just tried to look at the wiki page you mentioned but didn't find the article. There is a bit of information out there that is helpful though.

I've found an international tremor Facebook group but not a UK one. Would you be able to PM me it's name?

I'm having to rethink my social situations a bit now. My tremor makes me feel self conscious in a way I've not experienced before. I have to do public speaking occasionally and the thought of tremoring through it fills me with dread. My tremors tell my mood (fatigue, anxiety etc) more than I would like..

deepbreath Sat 28-Dec-13 21:43:32

Sorry, I didn't make myself very clear there! The Wikipedia page about Essential Tremor used to just say something along the lines of this - mainly old people get it and it makes your hands or head shake a little bit, but that's it. I remember reading it and thinking here I was telling other people that I have this thing that nobody has heard of, and they will Google it and find this - and it sounds like nothing.

What you said about feeling more solid on your medication does make a lot of sense. I find driving tricky, and have to get up in the morning a good couple of hours before I have to drive anywhere. Do you find that your tremor is worse in the morning when you first wake up?

I'm taking Gabapentin and Baclofen now, so I'm in a bit less pain. The Baclofen is a muscle relaxant as I also have issues with muscle spasm and spasticity. Fatigue is a problem, and most of the meds that are used for Essential Tremor don't help this.

It is difficult as you become very self conscious that people are watching, which makes you tremor even more. I had an incident in a shopping centre early one morning where an elderly man saw me shaking and slightly off balance, my walking wasn't the best. He tutted as he walked past me, he thought I had been drinking!

I will PM you with the details of that group shortly smile

TheAccidentalExhibitionist Sun 29-Dec-13 12:35:00

My tremor is noticeably worse when my propanolol wears off. So mornings, lunchtimes, evenings. Every now and again I lower the dose for a couple of days to see if the tremor is going away. I tremor really badly for a few days after being back up to normal dose, as if it takes my body a while to get back up to maximum propanolol absorpancy. I would like to change it or lower the dose and add something else in to see if I can reduce the fatigue but I don't think my GP could cope with that. She already seems out of her depth.

Does your tremor affect your job deepbreath? I mainly do fine detailed work with my hands and I worry that my career is over. I'm back to working a bit but no where near what I should be doing.
Sometimes I can tell people that I have a tremor but I may not be actually tremoring at the time. I'm sure they think I've gone slightly mad.

Awful to be mistaken for a drunk, I've learned not to judge shakes and falls, they really can be from so many causes.
We got a tut yesterday in the supermarket from a women who was judging my autistic son. I gave her a real mouthful. Between me and him we get quite a few stares!

ChanelTunel Sun 29-Dec-13 13:12:01

This may sound trite,but DH has had a tremor from childhood. Cutting out caffeine,and taking a hefty dose of Oil of evening Primrose helps enormously.

sunbathe Sun 29-Dec-13 13:20:09

Is your diet generally good?

Some minerals play a role in muscle cramping/spasms, so it may be worth looking into?

Willthisworknow Sun 29-Dec-13 17:13:17

Have u ruled out Parkinson's?

TheAccidentalExhibitionist Sun 29-Dec-13 18:15:26

The neurologist has ruled out Parkinson's, how he did that I don't know as he barely looked at me. I think it's more likely to be MS but I haven't had any testing for that.
My diet is fine. If I cut out carbs I have slightly more energy so I tremor marginally less.
I'll try oil of evening primrose thanks.

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