The National Spasmodic Torticollis Association is a non profit organization dedicated to providing information and support on Spasmodic Torticollis (more commonly referred to as cervical dystonia). Helping patients is our top priority: most of our work involves providing information, answering questions, helping with insurance and Medicare payment problems, and providing hope and moral support. We also work to educate the public and the medical community about Spasmodic Torticollis, advocate for patients’ rights, and support research aimed at understanding, treating, and ultimately curing this painful and debilitating neurological disorder.
- Website (www.cdtorticollis.org) and e-mail support ([email protected])
- Quarterly magazine
- Zoom Webinars
- Medical advice from health care professionals on our Medical Advisory Board
National Spasmodic Torticollis Association
17151 Newhope Street, Suite 208
Fountain Valley, CA 92708
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Diagnosed with Spasmatic Torticollis in 1987. Botox helped with my spams but not the pain I am now immune to it myobloc did not help at all and made it very hard to swallow. I do work full time it’s not easy but I am on my own and would loose everything if I went on disability, PA system. Pain is there everyday all day. Massage helps somewhat and use a heating pad. Depression and anxiety are definitely a part of my life. I take Diazepam daily, baclofen never helped me. I keep pushing on but one thing I know for sure is there are many who are worse than myself. This condition needs to be recognized like other major medical conditions.
Excellent information.
I HATE having spasmodic Torticollis, it has ruined my life.
Botox inj is costly in india. Other medicines are also costly. Is it possible for anyone to make it less cost?
Cervical dystonia. And spine problem. I lost job foreever dusability. Cant work 8 hours a day.
I know lot about. That. Car accident. Or. Chiropractor appointment cause. Dystonia. So. India and. Usa now. Theh start manipulation. Treatment. They damage neck. So. Aware of. Chiropractor. God watch . That only place. Pain come from. I do have. By chiropractor. I visit for lower back little pain. Chiropractor manipulate. Entire. Spine. Neck back. Now. Dystonia. Chronia pain. But not treatment anywhere in world 🌍. I take. Baclafan. Neurontin. Botox INJECTION. . not real cure. Carefull. Chiropractor 😊
Let everyone know. Do not go chiropractor. They damage my spine and neck. As well so many others. 😮. Baclfan help. Genapetin help. Chiropractor do inside othet injury 🩸🩸🩸🩸. Chiropractor damage. Make more spasm on neck and lower back. Person go for little pain. Chiropractor damage futher. That convert in cervical dystonia. Yes
Cervical. Dystonia problem come from chiropractor treatment. Or may sever car accident. So care full go with chiropractor. Than manipulate spine and neck loose real curve. Chiropractor not medical field. Botox only help. But. Cervical dystonia not cure. How many injections human take. Jusy. Not go chiropractor. Chiropractor are liable for that problem
Thank you so much for sharing this information. I have been on this journey since being a young adult. This is a different way to look at maybe finding relief. God bless you.
Hello, thank you for sharing. You may have mentioned in the video but i don’t think i heard what test did you get, Xray, CT ect.. to determine that you nasal septum was off?
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This video is the best on u tube 💯I felt the stretch in many angles I’m trying to fix my tilted head to the left where my chin goes to the right . Thank you so much this helped me immensely ❤❤❤❤❤❤🎉🎉🎉🎉💯
Very interesting and informative
I need help 😢😢😢
Hi Elaine. Email us at [email protected] and let us know what your situation is and what you can use help with.
Brilliant Thanks
This was absolutely fabulous Jamie 💓💓💓 Thank you 🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽
I went to Dr. Demerjian -- his mouthguard improved my symptoms by 50% (I wasn't able to go back for follow-up treatment at the time though). I'm hoping I can go back for further treatment at some point.
How can we reach you? Are there any treatments now that can help?
Very interesting! Thank you.
Can we please have a zoom meeting? I have diagnosed cervical dystonia and having some research lately… can I please message you on any communication app?
HI there. Email us at [email protected] and I can send you information on upcoming meetings or webinars.
What about PTSD or many doctors suggest gabapentin. Saying that your brain is not getting GABAPENTIN.
Any help is appreciated. This is so devastating. I’m so depressed and isolate as much as possible. What about small amounts of alcohol.
Can you please tell me what specific of aspercreme?
Hi there! You can email Ken directly at [email protected]. He is happy to answer any questions about his experience with ST and how you can determine if yours may have similar characteristics.
What a great talk!!!!
I had big nose bleeds and codirized as a kid 5years old. ST showed up in 11th grade
I was diagnosed with spastic Torticollis lateral and cervical dystonia last year. I notice the change in my neck about 7 years ago. Never got an answer till recently. The only thing that started new which is possible why they knew was this mild head jerk. I was reading the progress is 5 years? What exactly does that mean? If my curve was 7 years old will it get worst? I’m I pass that and no hoping I get back to normal with the Botox. Or does that mean the head jerk will get worst for 5 years? I’m so confused. If someone can clarify this for me would be great. Thanks.
How does the effect of botox change after years of injecting, in cervical dystonia? I've been getting this treatment for two years now.
In general if the treatments are 90 or more days apart, patients continue to get help with their symptoms. But patient feel the extent of benefit varies somewhat treatment to treatment. This may not identical treatment each time as to exact injection site and strength per. Vial can vary slightly as it is a biological not yet pure chemical product. Drake D Duane, NS, MD Scottsdale, AZ
torticollis hurts like hellllllll damn
Dude thank you. I have Tourette’s and my neck tics. Last night it caused instant spasms and pain and i was diagnosed with Torticollis. This helped alot
Упражнения отличные,но без перевода очень плохо их делать правильно.
Поражены левые или правые? Перевод плохой, непонятно.
Should I stretch both ways/sides? My head turns to the right.My muscles on the left feel so tight from resisting.
How much time we do for day
I have CD and just found this video too!! These look pretty good but what I learned is that using a heating pad or doing these after a hot shower helps to get a better stretch. Much more effective with heat first.
@@camillecali2 thanku so much
Hi Lanos. The key to these exercises is to listen to your body. Exercising to the point where you are in pain while performing them or will be in pain afterward because you over exerted yourself is not recommended. Start off slow doing a couple of sets of 10 with a break in between. Don't stretch to the point of experiencing pain but you want to get to the point where you can feel a slight pull of the muscles that are being stretched. Give those muscles a day to relax and recuperate and do another set of exercises that focus on other muscles. Then give them a day to relax and move on to the next until you have completed all exercises and then repeat the sets again. Remember to listen to your body and if you are feeling discomfort during or after the exercise, back off a bit on the stretch then slowly progress as you continue the rotation of sets. Baby steps is the key! :)
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Sir how can I do this treatment at home.... I am having torticollis at left side I am 20 yr old since childhood havit this.... But due to lack of awareness got no treatment
Damn bro that sucks i got this to am 15 really sucks it have changed how my face is shaped and my neck hurts what about you?
Hi.... I had ceverical dystonia tortilla How can you help me? I am from Iraq... Is there dress to contact with Dr...
Good Afternoon. If you have questions about spasmodic torticollis/cervical dystonia, please email your inquires to [email protected].
Do you have exercises for oromandibular dystonia?
Hi Doctor, After doing these very good exercises can I expect a good level of improvement after some weeks? Is it possible that I could get total relief from my problem by continuing the exercises over time? Jimmy.
In India it is very difficult for me to find a good treatment
Gracias tengo desde el 2004 con esto y fui sanada con botox y masajes .... por 5 años en tratamiento y paré todo por 10 años estuve normal ,pero este 2020 a regresado Pero no he podido regresar a un nuevo tratamiento por miedo a esta pandemia. Muy buen ejercicio y si tienes a alguien que te ayude con los ejercicios serán más beneficioso
this is a very good and practical thanks
Really helpful series, thank you for posting them!
Dr smasmodic Torticollis explained very well thanks lot god bless you well. danyawad from Bharat.
Learnt a lot from you, thanks!
Thank you for your kind words. Please let us know if you have any questions.
my head tremors began in the year 2005 with my friend saying "do you know your head shakes?" this led to a trip to the neurologist in my area.
We have spoken to many people who did not know that they had a slight head shake or that they were unable to hold their head centered. It was family or a friend that noticed this and brought it to their attention.
We hope that you are able to find a treatment with the movement disorder Neurologist you are currently seeing. If you have any questions about spasmodic torticollis/cervical dystonia, please email us at [email protected]
Thank you for posting, I will try these excercises ❤️
Hello have u got the results from these exercise
Very good Dr....I love him .......
He performed DBS on my dad for Parkinson's. This man is a wonderful surgeon and he is changing my dad's life. For the first time in almost eight years my dad is going to feel good again. I can't thank him enough. It's this doctor and GOD coming together to heal! God bless Devin Binder.