Neck dystonia (Cervical dystonia / Spasmodic Torticollis)
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- Опубліковано 29 вер 2024
- Ross talks about living with neck dystonia (also known as cervical dystonia and spasmodic torticollis) More information on neck dystonia is available on our website: www.dystonia.or...
Special thanks to Ross and to Dougal Macqueen as well as to onward-productions.com for affordable quality videos.
Please note we do not offer information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you.
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.
Omg thanks for sharing the Botox injection😢that what my doctor want me to do; I totally believe ejercicio and good heathy eating it will improve better than that injection.
i think they say this when their B*S* does not work. Rather than do some research they would rather pass the blame onto the patient.
I had a very scary experience with cervical dystonia due to a medication I was given for suicidal thoughts, which was already unnerving and I was seeking help for and then add in that I had no control over my neck movements. It really frightened me. Thankfully, the dystonia was reversed after the medication was completely stopped and I was given a medication typically used for Parkinson's (Cogentin).
Is it escitalopram?
I happy you are okay.
Find a good Dr. and I know how I deal with it is............ DONT EVER GIVE UP !!
I have dystonia thankyou for sharing
Omg 😱 me too
This is what I just experienced and got diagnosed with recently. ..it is, for lack of a better word, horrible and especially horrible that it took so long for you to get proper help/diagnosis. You are not alone.
Who do i go to get this checked out
@@monsieur420 I unfortunately had to go to the ER because on one occasion the spasms so painful it was debilitating. They did scans and xrays and "nothing was visibly wrong" or out of place, so they narrowed down to this. That's how I was diagnosed though I can't speak for others.
I hope you are well.
I agree with Rain Morrison. I have had 4 different neurologists over 13 years. I now see a chiropractor whose also a neurologist; it provides some relief. I hope y'all can find some help.
@@sarahbojangles1 Same. Had to go to the ER the first time. It was horrible. Hope you're doing better
@@drewm2793 I'm managing better now, keeping up with PT has helped a lot personally. Thank you, though I am so sorry you relate. Wouldn't dream of wishing this on my worst enemy. Hope you are well too.
Hello. my name is Rogério and I am from Brazil. Nice to meet you. I was
diagnosed with cervical dystonia. I would like to know if a remedy
(natural or not except botox since I am already taking it) could stop
the head tremor or at least make it less severe. Thank you.
I have this and no one talks about it!!!!!!! I have to get surgery for it
Please tread lightly when considering surgery. Consult multiple doctors and ask to be referred to patients who have had surgery successfully. Promises are cheap but you will be the one living with the outcome!
only two options are:
Nerve cutting
DBS
Thank you for sharing. Best of luck
Are there things I can do to help reduce the spams when they happen
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
So brave.
I think i have this the symptomps started 3 months ago im seeing a neurologist tommorow. How can this be treated?
Dear @ilyas2625
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
can this cause a lump in the neck?
If you have a lump in your neck please have it evaluated by a medical professional as it could be a sign of a serious disorder - or it might be something as simple as a fatty tumor. But I would say generally cervical dystonia does not cause a lump in the neck other than that caused by a tight muscle.
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! 💯👏💙
Dear Jaden,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
I was just diagnosed this year. I’m so confused by this. Is it true that 5 years it will get better? I know it doesn’t go away. But I’m being told this along with Botox? I pray for everyone here. I hope they find a cure.
@@hirefoo2605это будет намного легче через 5 лет
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.
Dear James, Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
Also, neurologists waste alot of time telling people it's psychological when it isn't. Somebody could spend years in therapy for nothing. If these doctors would spent that time and energy on finding out what it actually is caused by maybe they'd be on the way to a cure by now. I'm getting the impression that most people can't totally reverse it with the current methods available.
Once that gene expresses, you've got it for life; positive attitude or not. Nobody hears much about it because there's nothing much to be done. Doctors don't like to admit they're not gods Only Botox in the right areas works...or specific surgery...basal ganglia, my foot!
Thank you Ross for being so generous as to share your experience. My wife has had cervical dystonia or ST since 1970's. She went through all the same barriers you talk about, it's rather cruel of the medical profession to assign unknown things to psychological disorder, if they don't know, they should say so. She has Botox injections which help with the spasms and help bring her head to a more upright position. I wish you well Ross and hope you'll inspire others who live with this condition. Kind regards Colin, UK
My mother suddenly contracted cervical dystonia (or swinging torticollis or wry neck as it was called then) back in 1959. She suffered until her death in 2005. Can you imagine having to work as a typist? Only Botox injections finally brought temporary relief. Before that, useless medications and then alcohol made matters much worse. I rather believe years of repressed stress led up to the original outbreak.
@@laurencesmelser3083 Thank you for sharing Laurence, I'm sad she had to go through such a long period before any relief. She must have been an amazing person to cope with it and bring up a family.
@@colin101981 In the middle 1960s, the Mayo Clinic thought they had the answer... and they didn't, including ear piercing. Careless remarks made things worse like "why don't you just snap out of it". One day I spotted someone else with the same neck twist (a very rare sighting) and regret not talking to them. For a time Mother kept in touch with other Mayo Clinic patients and that was somewhat helpful. It would be interesting to see all the Mayo Clinic's records on dystonia. I worry today every time I feel a neck jerk (which isn't often) as to whether it's an inheritable condition. Is there any documentation about that?
I have the exact same thing as this man. It’s an absolutely horrible and insidious condition. This man is an inspiration.
Thank you for sharing. I was diagnosed 13 years ago and have experienced several other issues associated with my offset head: tremors, pinched nerves, disc degeneration, muscle atrophy, muscle spasms, tmj, stenosis, chronic pain. I have coped with my conditions by doing my best to stay positive, though at times it is a huge challenge. I'm glad to have found this video & will look into the Dystonia Society for support. Take care all of you!
I have all those symptoms too! Has any treatment worked for you?
@@omg28374 I have tried most everything. I stopped all medication 1 year ago, including Botox injections, which did help for a couple years. I recently started seeing a chiropractor who is also a neurologist and he thinks he can help with tremors and terribly misaligned spine. My daughter has been with him for 5 years for scoliosis and he has changed her life; so I have faith in him. I have tried just about everything else for over a decade, acupuncture is great too if you find a great practioner. Exercise and yoga are also helpful. I hope you find some relief and support Bao-Zhi.
@@christiew5822 would like to connect with you. I've got all the same symptoms. Thank you.
@@zebraplant5977 I'm sorry to hear that you're also in pain. What have you done or been told to do? Am interested in your story.
@@christiew5822 Message me at FB Messenger, "Zebra Plant" I just typed in a lengthy response, and it deleted itself.
check DrGominak.com Neurologist who works with clinicians, including dentists, ENT/sleep apnea.
I am using her protocol, which starts with healing the gut biome, using Vitamin D3+B50s+MVI and tracking the D3/Bs carefully, to allow the Acetylcholine to restore itself and work properly in the body. When that's low, the neuromusculoskeletal system breaks down. Her theory is when the but microbiome is healed, the brain reaches REM sleep each night, allowing the body to naturally restore and heal itself. Takes months of tracking, up to one year to restore.
It's working for me, in one-two weeks, already!
I can write you more about dental work, as it's tedious.
Clayton Chan hosts a blog, known as occlusionconnections.com
Visit the patient case studies, so we can talk, effectively. Watch his videos, learn the process. Get educated. Give yourself OPTIONS to heal!
Do get started on the LEARN tab on Gominak's website. Read, watch the videos, listen to the podcasts and simply GET STARTED. You'll be surprised.
This has been a 25-30 year journey for me. And it is the only thing that is really working. Then, and only then, will I revisit the reconstructive dental work.
If you're simply distraught. I used DrSha.com for healing purposes, when I couldn't find my way. I see now, this all goes HAND-in-HAND! We blasted out 2 benign cysts using healing blessings. I would have rather healed my gut, first, then tried that. Using Gominak's protocol is VERY effective in healing chronic inflammation and repairing what's causing the pain. Thank you.
sangat membutuhkan solusi terbaik untuk sembuh..selain doa dan berusahamencari cara terbaik untuk sembuh..karena kadang sangat menggangu kerja utk mrlanjutkan hidup
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.
This happened to me when I was 11. I was so scared. My head/neck would lock, sometimes backwards, sometimes to the side or drop forward. I remember it clearly.
I was rushed into hospital where they told my mum it was hysteria. Nothing unusual was happening at that time, it just came on suddenly.
Now 58, it's still on my medical records as hysteria.
Has anyone had trouble swallowing and breathing, balance issues and morning muscle stiffness?
Dear Bao-Zhi,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you,
Team Dystonia UK
It was very interesting to hear your experience & I applaud your courage in speaking up so that others may find a way to cope with dystonia. 👏👏👏
I have this it does not hurt but is anoyying
Thank you Ross. I have dystonia too. One of the hardest things would be being videoed while talking about your cervical dystonia. So I think you are doing a fine job of teaching others about this neck problem. Keep up the good work. A*
I have cervical dystonia
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.
Have you researched Joaquin Fatima’s?
Ich habe das auch
Einziger Lösung ist
YJ Care Clinic 🎉
I have this its honestly torture its just horrible you have trouble sleeping drinking just enjoying yourself
what a lovely guy. my mum had neck dystonia. she suffered greatly. this guys attitude is inspiring
Can you tell me what medical problems your mom faced due to dystonia please ?
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 can understand your problems as I too got cervical dystonia due to injury which I am sure nobody will believe my story of the incident. I too have many health problems. I am sorry you are going through all this. I hope you find peace and happiness.
the biggest problem is that too many doctors do not know what dystonia is ..... they mine would simulate or have a psyhic problem .. that is very hard as affected ... that destroyed my life ... but i wondered always what the meaning of my life is .. now I know it .. to help others who also suffer from dystonia and to say what you can not do under any circumstances ... and that is chiropractic !!! and no strong strains ... I'm pretty much at the end but before I go I want this disease known and especially recognized !!!! I was sometimes treated like the last muck .. said things to me like ... do you like sport you go swimming then it gets better .... then you still get antidepessives .... and they destroy you completely ... I pray for all that you will be healed !!!!
I can feel your pain sir. Is it possible so we can connect and help each other by giving support and advice ?
And sir why you feel you are at end ?
you would think with the Internet being 30 years old they would have some knowledge. But they get paid regardless so they don't seem to care. I think UK is the worse. Rather do my own research than se a UK GP
Thank you Ross for this encouraging video. If you ever make another video I hope you can let us know of any neck stretches that you may do for your particular dystonia. Bless you.
I have a few questions about your symphomenes, was it like that when you go through a department store that you feel part of it like on drugs? or the whole reality is funny? I always had such sympthome but they have never been associated with the dystonia .... it was always the case with me since childhood .... at some point the diagnosis torticollis spasmodicus but was not cleared what that is at all :-( years this sympthome and pain in the neck ..... always was done by GPs as if it comes from the psyche .... but I always knew that something was wrong with me .....
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
Sharing your pain. Hope for the cure.
Dystonia is involuntary shaking of the head not just stiffness
ok so where was this guys shaking?
You are wrong. It can be both or either
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...
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
Mine is like the same way, mine goes sideways and I can't control it. Happens when I'm in crowds alot like store or markets or theatres anyway. But when I'm alone it goes away.
With occupational neurologia it's HELL ...
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
Dear Riqqie,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
I could help you. I had the same dystonia and the head tilted more than in your case, I was abled to undo it from some relaxation methods and homeopathy.
+Sunbath Gamage I had dystonia torticollis. what kind of relaxation do you used? it was horrible for me when my head touch the pillow it start pulling!
I have the same, whenever I go to sleep, It's starts shaking the most.. @allen huang
Dude help me. I need it
Can we contact to help me treat my issue? I'm 22 years old, I did my first surgery in neck when I was 8, and another when I was 11. and I'm 22 but still the muscle is really feeling tight
Can you explain what help you?
So can they see it in an x-ray I had this for years a moth ago I slipped down steps now it is unbearable what should I do
Hi Christy, please email info@dystonia.org.uk for more information.
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 🙏🏼
Dear Mariana,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you,
Team Dystonia UK
Can we get in contact please...
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
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
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.
Are the injections painful ?
Exactly this happened to me also....
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.
Dear @SBGames8
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
Same Problem 15 years.. nothing helps.. now an orthopedist destroyed my Life whit chiropraktic...
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
Dear Anmol,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you,
Team Dystonia UK
Sir ab ap kese hen?
have you ever used chiropractic? it will only hurt you and you have more problems than before! i can only say to all with dystonia please never use chiropractic never !!! that will destroy you! I hope there will be a cure for all! and no matter what others say because they do not understand it ... shit on it and keep it !!! love for you all hope you will be healed !!!!
I used chiropractic (at least twice) and it was a total waste of money. Fortunately, it at least did not make it worse. Both times they ASSURED me they could fix the dystonia. What B.S. artists!
@@netbizcarolinawas it a cervical chiro?
@@robertwilliams5618 No, but my husband spent over $1k at one of those (for neck and back pain) that did nothing.
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.
It is pcychologist l
i have same
I’m not sure if this is the same thing I have...I do the same involuntary neck movements, turning my head to the right and forward, and then back to the right again. It happens 24/7 and no one has any idea why. It’s giving me immense pain now, and I don’t know how to handle it. This might be a word for it, but I’m not sure. It’s been going on for 7 months now, and I still have no answers.
Dear Laurelgems,
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you,
Team Dystonia UK
is it painful?
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!!! ♥️
Can Baclofen cause this?
Dear Chris
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
@@dystonia_uk Thankyou :)
Thankyou
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?
Dear @kimberlyforrest3676
Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
Are you cured now I diagnosed this year January
@@venkatsai8734 Thank you for your comment. We do not provide information or support through our UA-cam channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
Barely do they help
I have cervical dystonia and a tremor- Botox has greatly helped me
I have Torticallis
When i was a baby my head was very croced but now it is still but not that much
How did you get well?
He isn't well
@@s.p1512he looks well to me