My husband has dystonia which causes tremors . After 4 lots of Botox that didn't have much effect we found a fantastic doctor who re trained his brain my husband has not had a tremor for 15 months he still has very sore muscles and sometimes feels the tremors are on there way back but with self hypnosis they are keeled at bay

Hey! :) i'm female 16 year old, and i was diagnosed with a mild form of Dystonia, and Esential Tremours when i was Just 10. My dystonia manly affects my legs and the Left hand side of my body, i'm not on medication, as it's mild, but still painfull and annoying! Just thought i'd share it with you! My dad has Dystonia and Essential Tremours too, but he's got it a lot worse. The signs started when i was around 4/5 and my parents and teachers noticed my shaking and slight twitching/ muscle spasms at school.

I have Generalised Torsion Dystonia (Idiopathic), meaning I was born with a DYT6 Genetic abnormality. I led a normal life up until the age of 17, although my mum noticed that I walked differently and used to throw my left leg. She took me to the doctors once every cpl of weeks and she was told that she was seeing things. I had a fall at a gymnastics session when I was 14 due to me feeling shaky and unbalanced (I'd been a gymnast since I was 4) and went to see an orthopaedic surgeon and a neurologist, they both told me that my symptoms were in my head and I needed to go to group therapy or see a psychiatrist. At 17 i'd stopped going to gymnastics so much as I couldn't balance anymore. I'd also noticed that controlling my body was becoming extremely difficult. I went to see a neurologist (The same one as 3 years earlier), she apologised for getting it wrong and told me that I had dystonia. After years of different medication, she gave up and sent me to someone else who took my diagnosis away as he didn't think I ad dystonia and started me on new medication. I was on 84 pills a day at this stage. I went to the NHNN numerous times during this period and they took pictures, made videos and did various question and answer sessions. A student (at the time) recommended the Radcliffe in Oxford. I attended there and, because I wasn't DYT1 positive and Prof. Aziz was also of the opinion that I didn't have dystonia, I was rejected for surgery and my local neurologist ended up giving up as he no longer knew what to do. All the while, I was getting consistently worse. After 2 years of having no neurologist or diagnosis, I tracked down the student that had recommended the Radcliffe as, everytime I was at the NHNN,, he'd always take time out to sit and talk to me and, if I was on my own, keep me company until my appointment. He'd always shown great interest in my condition so seemed like the person I needed to speak to. I found him working at the NHNN as a fully fledged neurologist and research fellow. He recognised who I was straight away and made an immediate appointment to see me. He told me that a new gene had been discovered that causes dystonia but the test was only available as part of research. I immediately jumped at the chance to be part of the research and, when the results came back, I couldn't have been happier as it gave me my diagnosis back and therapies that I could try again. He sent a referral to the Radcliffe and, 18 months later, i've had the DBS surgery and so far, part of my shaking has stopped. I have a long way to go but, hopefully, this will be it for me. There is lots more to my story but it hurts to type for too long. Try, try and try again, you'll get there. Trust me; between me and my mum, it's taken almost all of my life and i'm 32 now.

I am 17 and i have Focal Dystonia where it effects my tougue to the point where it locks at the back of my mouth and i cant breathe also it expands and swells out of my mouth and my jaw locks to one side, also my eyes look up and too the right this could happen for 5hours or more !!! (thats when i go to the hospital) its annoying but yet nothing that they can do, but pycological stuff ! :/

im not sure if this is what my partner has but for the last 3 years he has suffered from full body spasms. It mainly happens during the night or when he wakes up. It lasts for a few minutes to a couple of hours. Weve been to the hospital and the inseterted a heart monitor into his chest about the size of a usb stick but everytime we go back for results it shows nothing. Weve pushed and pushed with different consultants but it just gets us no where. Hes had to pretty much stop living a normal life and ittttts affecting him so badly. when it happens he loses control of his whole body. hes fallen down stairs, thrown drinks everywhere and countless times had 2 hours sleep. its making him a broken man and hes only 24! if anyone has any ideas at all i would be so grateful, its killing me watching the man im going to marry fall apart his way. thank you everyone x

hi im 29 years old since sept 2010 i have had facial spasms with my right eye closing and my mouth twisting to the side. When this happens i can't talk this happens at least 4 times daily sometimes more. i have difficult carrying anything as this seems to trigger my spasm. I have noticed my right arm being alot weaker lately. sometimesits difficult to swallow. its ruining my confidence as people can be very rude.When my face isn;t trippin i have pulses in my eyelid and lip. the spasm can last between a minute and five any suggestions as to what it is? kelly

not sure if i have dystonia but i do have terrible twitches and some days are worse than others ,if am relaxing i tend to twitch more and it seems to be getting worse ,by the end of the day my muscles are aching ....others are starting to notice these twitches and am so embarrassed i could cry i've had this for as long as i can remember does this sound like dystonia ?x

Hi, where are you having the Botox injected? I suffer myself from Laryngeal Dystonia (Spasmodic Dysphonia), in combination with spasmodic torticollis (affecting my neck and beck), weakness in my right leg and writers cramp (House!) For these I have botox injected on the right and left side of the neck approx every 4 months and see a great deal of relief. However, I used to have Botox direct to the Larynx (this was administered at Grays Inn Road ENT hospital, London) - this is one of very few clinics for the direct Larynx injection in the country as the process takes great skill and knowledge. I actually ended up stopping this treatment as I found the people I met in the waiting room were far worse off than me (I sound strangled when my voice is bad, these people just could not talk at all) and I wanted to give up the space to someone more deserving. I am not convinced Hypnotherapy would assist with this, I did try it once for the neck spasms but saw no relief. I have seen very little (on some sessions, none) side effects from the Botox, so will be carrying on with it, even though the effectiveness does tend to vary with each session. In answering another query on here, I normally find the Botox takes effect within 3-7 days, if I have no relief after 7 days I know I'm not going to get any (I find it very curious the way it works sometimes, but not others - the Dr clearly marks the areas to be injected and uses the same dosage each time - I'd be interested to hear other experiences of this?). I believe I have actually suffered with Dystonia since I was about 13 (now 38) but it was only in my 30's it was diagnosed when the speech issue kicked in. At the time, the Dr's first thoughts were a brain tumour, so I consider myself (in an odd way) to be lucky to have Dystonia! I can deal with the neck, leg, back and writers cramp easily, but the voice issue causes me problems mostly in telephone calls where I have to keep repeating myself and find this immensely frustrating. Further, when speaking in person I often find myself needing to apologise for my voice, or taking the easy option and saying I have a sore throat. Its irritating as I am essentially a confident person, but the Dystonia puts me on the backfoot in any discussion.