My name is Lisa, I am 58 years old and I have recently been diagnosed, having developed a minor tremor in my right leg back in Dec 2019. I am struggling to come to terms with having this disease and have been totally traumatised. For the last 4 months the tremors have spread to my right arm, torso and neck. This starts the minute I wake up (I am currently under Zopiclone in order to sleep) to when I take the meds at bedtime. There is no respite, so I can never relax my body. My GP, says I can’t use Zopiclone indefinitely, but how will I sleep with the constant shaking? Can anyone advise if they’ve had the same issue and, if so, how is it dealt with?
Welcome to the forum and thank you for your message.
I am really sorry to hear about the violent tremors you are experiencing. That must be really horrible for you and we know how frustrating tremors can be. I’m sure other members will offer their advice and will have suggestions, but I also wanted to share the information we have on our website on managing tremors: https://www.parkinsons.org.uk/information-and-support/tremor.
You can also call our free helpline to discuss techniques for managing your tremor. We are open Monday to Friday 9am-7pm and 9am-2pm on Saturdays so don’t hesitate to give us a call on 0808 800 0303.
Emily - Forum Moderation Team
Firstly welcome to the forum I’m sure you will find it very helpful in the many many years to come.
I’m Tommy and I was diagnosed around 2016 (I don’t count anymore). I too have an extremely violent leg tremor, sometimes so violent my specs have fallen off my face whilst waiting at the supermarket checkout. I do have other tremor symptoms but they have been very slow to appear and I mainly feel them inside except for chattering my teeth.
After many trial medicines I am now off all pd type drugs and I am on zopiclone, venlafaxine and clonazepam. I have accepted the tremor as part of me now mainly due to an 8 week mindfulness course in Oxford around 2 years ago I no longer bother who stares at me or asks me if I’m cold, I’d bet that is a familiar question for you!.
Insomnia however is my arch enemy.
Your symptoms are spreading much faster than I could cope with but we are all different (another phrase you will read a lot). As for your zopiclone question, well that depends on your daily routine are you still working for instance?. I no longer work despite being the same age as yourself but my daily routine includes caring for my wife who is ill but not pd related.
I am therefore able to nap during the day once exhausted. I don’t know how you get on on with zopiclone but I still fight sleep or the awful metal taste which means that I wake constantly needing water and all the other stuff that comes with that.
I spoke to my gp and cut the zopiclone to three times a week at first and now roughly once a week when exhaustion gets the upper hand.
I hope you have a good gp and can explore any strategies that can extend your zopiclone use for as long as you can.
I fully understand your frustration and worries about the future but I assure you with the help of the people on this forum you will learn to cope one hurdle at a time.
I wish you well on this journey through pd and I am confident that you will find the right path for you.
Thank you, Emily.
Thank you so much for your kind and helpful response, Tommy.
My GP has upped my PD meds in the hope it will calm the shaking.
Not ready to give up Zopiclone yet, as it does give me up to 6 hours sleep. Will see what happens with the meds…
All the best to you, take good care of yourself.
I hope that the increase of your pd meds is successful.
Meantime I have a suggestion, I take melatonin on the advice of my neurologist.
This is not available on prescription as it falls into a category which nice deems of no medical value.
My supply comes from the U. S a company called biovea as the UK company suggested by the doctor ironically wanted a prescription which no one would issue (crazy).
Anyway it is quite a cheap hormone and maybe worth a look at before your zopiclone is withdrawn along the road.
Stay well stay safe
Great, I shall look into that. Thank you Tommy.
I’ve been on zopiclone for 10yrs ,but I do know they have clamped down on as they have been paired with heart attack been on them so long they have left me on them ,but recently not been working as good, so gp introduced 2mg diazepan working really well relaxes muscles as well. Have a word with gp