Author Topic: Hello there  (Read 555 times)

macphisto73

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Hello there
« on: December 09, 2017, 06:26:39 PM »
Hi everyone,

I'm Paul from Kingston, Greater London. I was diagnosed with essential tremor in the early 2000s, so in my late 20s. Before I saw my GP I used to experience shaking, panic attacks and general anxiety.

I was prescribed beta blockers (Propanolol), which I am still taking today. I take a 160 mg sustained release capsule first thing in the morning and occasionally top up with several 10 mg tablets as and when needed later in the day.

While the Propanolol does reduce the tremor, it is always there and like most people with ET, varies from day-to-day due to several factors, namely stress/anxiety, health, alcohol intake, sleep (or lack of), work and personal issues. I also take a low-dosage anti-depressant (Sertraline), which I've been taking for around 4 years now.

I have found that the melting pot of the ET, anxiety, and mild depression, have impacted on my confidence in social and work situations, and have held me back in progressing with my career as far as I would have liked. Also, I feel my tremor has worsened over the years, which concerns me.

I am signed up to a couple of other websites in the US, and I have been fascinated to read and watch webinars on Neuravive, a non-invasive, non-surgical ultrasound procedure, as the thought of having any sort of deep brain stimulation procedure utterly terrifying!

I haven't had a full-on look over the NTF site or this forum yet, but would love to know if there are any upcoming UK trials testing this noninvasive procedure. The most recent information I could find here is a year old now:
https://www.imperial.nhs.uk/about-us/news/trust-first-in-the-uk-to-use-non-invasive-ultrasound-for-brain-surgery

I'm sure I'm not alone in my pursuit of this holy grail, but even just sharing experiences would be a huge help on here.

Thanks for listening,

Paul :)

Elizabeth

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Re: Hello there
« Reply #1 on: December 13, 2017, 08:10:36 PM »
Hi, This is my first post, I have had my tremor for many years and take propanol slow release twice a day without them I dread to think how I would manage. It effects my right side, and since having a TBI  2014 it is now in my left hand, head and effects my voice. Last week I spoke to my doctor again and asked for some help, she said to me “it will only get worse” no sympathy or understanding. Any advice  would be appreciated Liz

macphisto73

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Re: Hello there
« Reply #2 on: December 13, 2017, 09:04:53 PM »
Hi Liz,

Welcome. Newbies together!

I'm also very disappointed at the lack of knowledge and understanding of ET since I was first diagnosed. I have a more empathetic GP than you by the sounds of things, but I've not been given suggestions as to alternatives to try besides the beta blockers I've been on for all these years. What I don't get is that I see figures of 1 million people in the UK being affected by ET and yet I've struggled to find anything online about non-invasive trials or treatment in this country.

Paul

JC

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Re: Hello there
« Reply #3 on: December 30, 2017, 03:48:38 PM »
Hi
JohnC here

I was first diagnosed with ET roughly 6-7 years ago when I was also diagnosed with Type 2 Diabetes

Over those 6-7 years the ET has worsened progressively, I have had these 'shakes' confirned as non Parkinson by both my GP and ttwo specialists bth neurologists one from Addenbrokes hospital

In recent weeks I can no longer make a legible signature and can not pick up a full cup, glass without spilling it, a screwdriver [not the drink] with a slot in the head is a no-no

Sometimes my words duplicate the letters

ps I am 78 yoa and take Gabapentin
« Last Edit: December 30, 2017, 03:54:48 PM by JC »

brileo

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Re: Hello there
« Reply #4 on: January 18, 2018, 11:07:13 AM »
Hi, I am experiencing intermittent hand shaking, at it's worst when I first wake up, any advice/suggestions gratefully received.