Share your first signs and symptoms of cervical dystonia

Hello,

i just recently got diagnosed with CD. I suspected it was what i had for a while now, but finally went to a neurologist to confirm the diagnosis. I will be starting botox in a few weeks. No idea if it’s going to be a great solution but willing to give it a try.

I did a lot of research on CD online and read a great book on the subject:

https://www.tomseamancoaching.com/product/diagnosis-dystonia-navigating-the-journey/

It has a ton of information on this condition and possible treatments. I highly recommend reading it if you haven’t already.

@ITGuy1 thank you for sharing and happy you finally have a diagnosis to the condition. Once I got my diagnosis, I was kind of relieved that I was not crazy or having some unknown disease.

How is the botox working for you? I noticed pretty good effects rather quickly when I began.

@maritootles I would not recommend going to a chiropractor. they are not skilled beyond their own thought processes... have you ever gone to a chiropractor who actually x-rayed you or had an MRI? They should not just be manipulating with such force without looking at the spine and vertebrae (herniated disc or slipped vertebra)... additionally, our muscles are in a contracted state which will fight their manipulation and could cause more damage.

I would recommend doing botox, acupuncture, or dry needling first... and PT.

@Nicholson13 I remember waking up and having spasms in my neck and not being able to turn it well to the left 

@rooks71 yes me! I went to a Tmj specialist and they do some massage techniques and the Dr also made me a small mouth guard I sleep with every night so I don’t clench my teeth from stress and pain from my neck. It def helps. U can use warm compresses on your jaw also. I also go to acupuncture once a week for my jaw and neck- helps so much! Hoping this info helps you some-

@rooks71‍  yes me! I went to a Tmj specialist and they do some massage techniques and the Dr also made me a small mouth guard I sleep with every night so I don’t clench my teeth from stress and pain from my neck. It def helps. U can use warm compresses on your jaw also. I also go to acupuncture once a week for my jaw and neck- helps so much! Hoping this info helps you some-

@Foxyfoxm what type of acupuncture do you get done? 

Great advice on the mouth gaurd to prevent grinding and clenching!

@Dyston!a Hi , I go weekly and I get the acupuncture in my jaw and various points in my neck to help with movement since I’ve opted not to get the Botox shots yet. It really helps with pain esp with my jaw. I have a hot tub also and I always so - there no pain in the hot tub! Was the best investment ever for me anyway.. Mind you I’m not 2 years in with my cervical dystonia and the progression is 3-5 years altgh I’m hoping this is my progression or at least not much further than how it turns now. 

@Foxyfoxm that is amazing and great that the acupuncture is helping! Can I ask why you did not opt to get Botox yet? Have you found acupuncture also helps with your spasms?

@mvmentme To be honest I am afraid of getting it..  I had finally made up my mind to get it and then upon receiving the prescription with the insert that I read from top too bottom I decided I didn’t wana put that in me unless I absolutely have too. I have dysphagia already from the turning and tightness in my neck and a side effect is greater to loose feeling in your throat for a week or so when ur already at risk with the dysphagia. I’m also not stuck with my neck but if I was I would def get the Botox! I cannot turn at all to my left and my neck is to the right but if this is the progression it will stay at then I’m ok with the treatment I get. I’ve only had this for 2 years following a car accident so I’m hoping this is my progression.