Video

Even today many GP#s and physios are ignorant about it. They could spend 1 hour reading about it and have some knowledge. But in a system that rewards poor performance why bother?

I have the exact same thing as this man. It’s an absolutely horrible and insidious condition. This man is an inspiration.

sangat membutuhkan solusi terbaik untuk sembuh..selain doa dan berusahamencari cara terbaik untuk sembuh..karena kadang sangat menggangu kerja utk mrlanjutkan hidup

I have some right head turning that happens by itself and it is very frustrating. My doctor says it's anxiety, stress, and TMJ. He said he was 99% sure and not to google anything or do research. He said seeing a neurologist is a waste of time.

Thankyou

Plz try biotin tablet my Father suffering from dystonia seens 20 years and my fathers friend suggested biotin tablets.He was completely fine in one day. plzz plzz try it

Hi there I have o problems I am going few the hospitals ATM wen my eyes see sun light or day light my head go's bk looks up and my eyes roll bk in to my head I am under neurology doctors and I can see wen this happens

I have just been diagnosed with dystonia. I am scheduled to meet my move disorder neurologist in January. Have you had Botox injections? If so, do they help?

So brave.

I believe it could be caused by heavy metal toxins..... Detox from the heavy metals and most or all the symptoms will disappear.....

*promosm*

My daughter is healthy, but when she is 5 years old, she fevers and brains swelling .now sh3 is totally disabled. It's ok, but after 1 month, she disabled the start of the distonya .every body part finger ,hand,arm shoulder, feet ,legs, spine, neck,face, teeth, menas every single body part .no any medicine help 12 different kind medicine distonya. But not help any .after distonya last year, start operation, spine, hip,legs. I m really happy now u distonya free.

Only just watched this. 3 months late! Super interesting and I thank the participants for their time and wish them every success in their projects. Such a low number of views considering the number of people with CD

Dystonia is involuntary shaking of the head not just stiffness

Thank you for sharing. Best of luck

Thank you for sharing your thoughts and unfortunate discovery of eye dystonia. I have a very similar paradoxal symptoms including, when I am talking to someone (and not by myself), my eyes open wide. But when I'm listening, my eyes slowly close shut. I do have short term control (moments) when i sense danger, i can open them. But then seconds later, they may try to close or squint (causing blurry vision). My neurologist calls it Meige syndrome, But that is just a general term, and I do NOT have any other symptoms such as tremors or spasms. The eyes just slowly close to a squint (barely open). Botox has little to no affect, so I'm contemplating surgery that will help lift the lids. I just don't want them to remove anything, such as an eye muscle. Finding a qualified and sympathetic surgeon is extremely hard. I hope to find some answers in the Dystonia Society. This has definitely been a life-changing event and after two years, adjusting is exhausting and frustrating. Thanks again for sharing.

I was not diagnosed with Cervical Dystonia until my mid thirties. It took many doctors, M.r.i'.s, misdiagnosis, etc. I was hit by a S.U.V in 2004 while walking and my spine was injured (4 broken bones) there was also trauma to my muscles on right side where it was completely crushed. I have many other spine problems but thats for another day. With Dystonia, it is not known if it is genetic or caused by trauma. I currently see a Neurologist for treatment and get botulinum toxin injections every 3-4 months in my shoulders, head/neck and forehead for the migraines. It has helped some. Which is better than nothing. I am also on other medications of course to help with the constant muscle spasms. But I recommend the treatment if you have not had it. Hope this helps others that reads this. I wish you all the best that are out there suffering like I am.

I have this it does not hurt but is anoyying

I have cervical dystonia, came on from a really bad fall 5 years ago. STOP living in this, retrain your brain, the more you stay and think you have a issue the more it becomes a problem. RETRAIN your head! Listen to a Ted Talk done on this!!

I have this its honestly torture its just horrible you have trouble sleeping drinking just enjoying yourself

is it painful?

czcams.com/video/FRgWOJcfi5Q/video.html Look at these wonderful treatment results! Awesome!

Hi actually i also tend to move my neck sideways sometimes to adjust but i can however control it but it's like when i m doing nothing or just thinking or i am eating it automatically starts happening and then i control it

This is AWESOME 😎 👍🏼 THANKS 🙏🏼

With occupational neurologia it's HELL ...

Mine is from a boyfriend putting me in a headlock. I’m still checking injections every three months to stop the spasms. God bless you brother.

Can Baclofen cause this?

Thank you

It is pcychologist l

Are there things I can do to help reduce the spams when they happen

What a great guy it’s one of the hardest things in the world I got diagnosed with dystonia when I was 16 but i started getting it when I was 12 years old. It was so hard to get diagnosed I had no idea what was happening to me I couldn’t explain it very well and just felt so alone 😔 I’m currently taking epilepsy drugs to calm it down as apparently there’s nothing I can really take for it but it helps take the edge of and reduces them from happening but I have phases when it can be really bad and I’ve been getting it really bad at the moment and I’m so fed up and feel so alone with it but people like this guy really make me realise that I’m not alone and there are people going through the same thing as me. I have so much respect and love for those battling this condition it ain’t easy and I don’t know who needs to hear this but you are not alone you are strong and brave you have got this you beautiful incredible people! 💯👏💙

I was diagnosed with Cervical Dystonia at age 27 in 2007. It wasn't too bad at first, but after 15 years it has gotten worse. I can't even sleep lying down because the neck/head movement keeps me from falling asleep. For the first 10 years or so I used alcohol to deal with the pain and spasms and damaged my liver. Now that I cannot consume alcohol nothing seems to help. I tried Botox injections for the first couple of years, but that didn't help much, if at all. I'm to the point now that I don't where to turn. I cannot drive a car or work because of this condition.

I was diagnosed with cervical dystonia 05/25. It’s horrible. I have severe headaches for days and days. I have it in my feet as well. It’s a nightmare. Sending lots of hugs from the States!!! ♥️

I feel for you..thanks for sharing awareness...my 26 y.o. son had started having involuntary head movement after having intense stress at work and depression...I'm not sure if it's dystonia or not...Which specialist can I go to ? Thanks

Can you guys get in contact with me to help me treat my issue? I'm 21 years old, I did my first surgery in neck when I was 8, and another when I was 11. and now I'm 21 but still the muscle is really tight and my body preformed a bit leaning to right side. Is there any hope to get treatment even though I did 2 surgeries... but now since I'm grown... is there any hope to untight the muscle somehow??? Pls reply

I've had CD since 1995 and realise after seeing your video, that somewhere along the lines I've allowed myself to become complacent about this "Dis-Ease" and had come to believe that this constant daily discomfort and anxiety i feel is something that's always going to be.a part of who i am and i just have to buck up and deal with it. Hell no ! Time to be proactive again acc act and think positively and start.living by putting an end to defining myself as this label. Thank you. I hope after the seven years since you've posted this video things have gotten better for you. I'm very excited to find out.

I have cervical dystonia

When I'm writing or drawing, my eye pupil will randomly and uncontrollably twitch around and my vision will go blurry, also my voice box tightens so it makes it hard for me to talk loud (and makes me only be able whisper) is this dystonia???

I think I have eye dystonia. I've had stabbing eye pains that started in December 2013 when I was only 28. I woke up in the morning with this stabbing eye pain. It felt like my eye was being stabbed from the inside out with a knife or needle. Sometimes the eyes felt gritty like there was sand in them. It was so bad I screamed and thought my eye was exploding in my head. It hurt to open my eyes and tears were pouring out. I've been to so many doctors and specialists and have just been given ointments and drops, but sometimes they don't work. I sometimes need a cane to walk around my house so I don't walk into stuff. I also wear sunglasses every time I leave the house, even on rainy days and in winter. I don't have symptoms every day, but on mornings I do wake up with the pain it really limits what I can do.

The Doctors also said it was in my head. Your story is so inspirational and true to what I am still contending with every day. 3 years of botox shots and no improvement. Still looking for a remedy. Another symptom I am dealing with is balance. It is so difficult to keep focus when you're trying to correct your head in the direction you're heading towards. So depressing and frustrating. Oh, it also is crappy when your friends and family think you're making it up.

Thanks for sharing your story ❤️ . And excellent detailing by the pt.all the best for the channel

What will be the treatment of writers cramp in near future

I was diagnosed with dystonia this year. It's been incredibly difficult and frustrating. I'm a professional dancer so to not have complete control over my body is absolutely devastating. Mentally its been extremely difficult, and I'm still in the phase where I try to hide my symptoms. It's exhausting. I go for my third round of botox shots this week. It doesn't really seem to be helping though. I'm just wondering if there's anyone out here with this disorder who has tried to find the root cause, and treat it that way. I would really like to get to the bottom of this instead of masking it.

After how many year destonia will be stable?

I have this and no one talks about it!!!!!!! I have to get surgery for it

Ben 15 yil bu hastalığı cektim. Tanısı bile zor kondu. Proloterapi botoks hacamat egzersiz kök hücre prp bitkisel tıbbi psikolojik vs vs vs Her aklima gelen tedaviyi denedim. 20lik dişlerimi çektirdim bitti. Dişlerinizi cektirin. Bu konuda bilgi sahibi cok doktor yok. Dişle alakasi yok diyen doktorlardan dolayi yillarca üstünde durmadım diş konusunun. Baska hicbirset yapmadim dişle bitti. Tum 20likleri cektirdim. Tamamen gomulu olani da çıkmış olani da cektirdim. Bu dunyqda cehennemi yasamak biliyorum bu hastaligi. O yuzden yaziyorum. Allah cekenlere şifa versin...

No one believes me in the family that I have it I’m 45 and I will prove them wrong. When I lay down on my back my head turn left itself . Sure my wrong sleeping causing it on my left

i am a victim of neck dystonia from india. please someone tell me the correct treatment. i face a lot of bully dure to this

Hi, my 14yo niece was just diagnosed and we’re all in shock. What should we expect? What can her parents do? What’s the best treatment? Thank you 🙏🏼

Thanks