Neck dystonia

[Dee123456]

Hi I have head tremors and neck tension. Very embarrassed and self conscious about it. Anyone know the best treatment ?

[sarah_1983]

Hiya hun I struggle with same thing I get BOTOX every 3 months though emg also have diazepam and naproxen but do still have tremors sorry I can not be more help my friend had dba surgery which has helped her very much this is now something I'm reading about and will bring up with neurologist next time I see her as it stoped my friends tremors

[sarah_1983 in reply to sarah_1983]

Dps

[Dee123456 in reply to sarah_1983]

Thanks for the reply Sarah. I've tried a few oral medications and BOTOX and found nothing works. Trihexyphenadyl takes the edge off i think. I know it isn't life threatening and there are people alot worse off but this thing realy does affect my quality of life and i think the neurologists could cure this if they put there mind to it instead of just giving sedatives out. But anyway carry on regardless 😀

[Hidden in reply to sarah_1983]

Same as me...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.

[Cashewnut in reply to Hidden]

Hi Burrowman,

Sorry you have suffered so much. I was got rid of too and have taken my ex employer to an employment tribunal. Would you be able to offer me any advice?

[philscott19571 in reply to Hidden]

I had a consultation with Dr Edwards when he wa at UCHL - he is now Prof at St Geroges London.

I was diagnosed some 30+ yrs and still suffer the same condition.

There was a programme on BBC about athe use of technology developed by a Microsoft engineer that generates electricl contractions to your body which negates the electrical impulses sent by your brain..i am keen to pursue this option..is anyone aware of similar options.

[Upsman in reply to Hidden]

Hope you’re still trying , it hit me at 47 , reasonably fit , scared the shit out of me and lost me a girlfriend . Fortunately I had private insurance from work and got diagnosed relatively quickly , 6 months . It is massively depressing to suffer from something with no cause , thought mine was a stiff neck from working away in hotels with small pillows ! It does pay to go out and talk about it , when people ask , their problem if they didn’t expect a long g answer !

[Hidden]

I have heard of 2 medical procedures...both very dangerous because of your central nervous system and know of one person this has worked 100%. It involves electrodes in the brain which block the signals, this also requires a battery implant....the other is simply cutting the nerves but these are very dangerous. X

[Dee123456]

Thanks for the reply mate. My condition is not as bad as yours by the sound of it. I don't fancy dbs just yet or denervation but have you heard of a new treatment they have developed called mri guided ultrasound. I think they're only giving it to people with essential tremor at present but you never know. Try to stay positive mate hope all's well 😀

[Hidden in reply to Dee123456]

Thank you....sincerely.

[philscott19571 in reply to Dee123456]

Dee - I am interested in this can you provide any more info.

[Dee123456 in reply to philscott19571]

Sorry Phil don't know much more than they give it to people with et but if it's successful they may widen the treatment to others. Try googling it. If you find anything out let me know. Cheers.

[13kittycat]

I was diagnosed and then a pain clinic took the diagnosis away (calling it myofacial pain) but still couldn’t turn my head and still tilted and stuck in position. I was already on carbamazepine (trigeminal neuralgia), topomax (migraines), and was prescribed gabapentin for pain as their theory it was all pain related. I had other docs try to force my head to turn it didnt work it’s not like I didn’t turn bc of pain it was stuck. The dose of gabapentin was tripled and all the sudden my head isn’t stuck to the right anymore. It still feels stiff but it can turn which I haven’t been able to do in 2 years since my car crash. I don’t understand how but I don’t want to question it. I’m thrilled as I haven’t been able to drive bc of it.

[NUTZ]

Hi,

I was diagnosed with neck dystonia 12 years ago. It also affects my speech somewhat and also can experience pain in my neck, shoulder and arms.

Anyway I have received botox injections for just over 11 years which worked well to begin with. I'm still able to work though only part time until things improve.

Some advice I can give is to try and relax, do things in your own time and don't rush. Yes it can make you self conscious and want to shy away from the world so remember you are not what other people may think about you. You have a life to live just like everyone else. Enjoy what you do and do what you love.

[Hidden]

I have dystonia in numerous places..but worst in neck n arms,so i get where ur coming from 1000 percent.also VERY self concious about how people act when they see me having an episode.Glad to know I'm not alone