Dystonia Society

Living with extreme Cervical Dystonia

Hello friends...I’ve had EMG and every medication under the sun, including liquid morphine. I wanted to end my life but I have 3 beautiful children and an amazing family. I am still in dire need of help as nothing works and I became addicted to morphine, tramadol and Diazepam which made things even worse as my Cervical Dystonia is at 85% left, I am an extreme case and lost everything in my life....there is hope. I’ve been seen by the best at St. George’s in Tooting and even they could not help me. I have been reffered to a movement specialist. I saw Dr Jo Flowers for EMG Botox who was absolutely lovely but after maximum dose I had trouble breathing and swallowing so she has reffered me on to a professor of neurology movement....I am at the end of my teather but you must understand it is a long journey and you have to believe you will get better. I lost my job, ant drive, can’t turn my head, lost 3 stone, cried for weeks and I am a very confident 42yr old male. I am still up and down....but I still have questions and have tried every drug anyone will mention (trust me, I’ve had everything) and nothing has worked. I am now being looked as from a cause point of view, not an effect....the effect is my neck rotation and jitters, the cause is my brain making it do this....and I’m dying to know why as it’s ruined my life and I want it back so badly. I’ve been rejected from interview after interview and I’ve always had very good jobs, it can only be my physical appearance, I just can’t prove it. When I was diagnosed funnily enough my work had a restructure and I was offered a ‘package’...I took them to caught and won under unfair dismissal. I need the neurologists to fix me or or I don’t know what I’m going to do....I am currently waiting for an appointment now. I truly wish you luck and much love in your quest for wellness....I’ve been through everything you have. I’m really happy to talk to anyone over the phone if they want my number and on the flip side....does anyone have any advice for me? Either way this is a horrible condition I wish I never got for no reason! Love and light to you ALL. Tim.

12 Replies
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Hi,

I take it that you’ve had full brain mri scan to ensure that there is no other underlying cause.

I have blepharospasm (rapid eye blinking and Botox around eyes every 3 months to keep it semi controlled). One thing I’ve found that helps if HBOT which I have at the local MS Centre. I originally stated it as I also have rheumatoid arthritis and it helps with inflammation and was surprised to see the monitor improvement in my dystonia. It is not an approved treatment for dystonia (or RA!) but if there is a local MS centre near you it may worth exploring - be sure to check that it’s right for you before trying it and talk to the people at the Centre and your doctors.

All the best

Ali

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Thank you. x

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Hi there, hope your well? I have been referred to have Botox for my eyes, I am worried that it will make me eye lids droop? Did this happen to you?

Kind regards

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Hi,

It can do and it took about 3-4 rounds to get it just right for me. I ended up reducing a couple of areas which gave me best results. Ask them all the questions you need and share your concerns, worries and also your ideas. I find that I use my frown muscles to help control it so we didn’t do these but some people need the higher muscles doing and it depends very much on your own quirky blinking mechanism. We do slightly higher dose around the right eye as this eye seems to ‘lead’ with the spasms and the left eye plays along!

Also if you haven’t been given eye drops ask for them as you may get dry eyes due to the slower blink rate and I also get headaches for a few days post treatment so use those forehead sticks (they come in a pink box from most chemists and are around £4.50).

All the best

Ali

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Thank you for your reply, I will certainly share my concerns and hoping for the best really.

Take care

Lauren

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Hi,

Have you ever been assessed for DBS?

Apologies if this is repetition...

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No but I am seeing a neurologist on the 1st of next month and I can only hope, I am in loads of pain today too. :(

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Good luck. Are you seeing a movement disorders specialist? I hope you can get help

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I’m not completely sure, it’s the first time I’ve seen the Gentleman at Tooting. This is because EMG Bottox did not work and my neck is torn at 90 degrees left from the front.

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I understand. I hope you get a full work up and appropriate follow up

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Thank you kindly...I will update the forum and hope others can be guided in some way.

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Hi there Burrowman. How are your symptoms? Just thinking of you as I remember you had your diagnostic workup/Botox recently. Best wishes

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