My cervical dystonia diagnosis story

Trying to talk to doctors about dystonia is the worst. I was hospitalized during a storm and was treated as a drug addict because they thought I was in benzo withdrawal. So they detoxed me while I was unconscious and sent me home a dysfunctional disaster. Since then Im not able to control my symptoms at all. I’ve lost everything. And can’t take the same meds anymore, the rapid detox was pretty hard on my brain and now the drugs just exacerbate the symptoms. It sucks that doctors who are ignorant assume they know more than you and just make treatment harder. Living with dystonia is so challenging. Thanks for sharing your story. Its people like you that share your story that bring me a lot of peace.

Bless you! I've never heard of this until today, but it sounds truly awful. A friend's husband has just been diagnosed and is fearful of his future. Thank you for being so honest and I really hope you're able to have something done to give you your life back. My heart and prayers go out to you, truly. ❤️ xx

Girl my heart goes out to you.. I to suffer from all the stuff you talk about. I was told different things by my doctors as well. My prayers are with you. I am so sorry you have to go through all of this. May we both find a miracle from God. I am Sending hugs and prayers your way.

So nice to find you you’re amazing. I’ve had cervical dystonia for 5-6 years, head shakes are similar to yours. Range of motion issues. My head rests to the right with right shoulder elevation. I did find neuro physiotherapist to be helpful as normal physio can excite the dystonic muscles and make symptoms worse. Was interesting to hear about the problem with stairs. I’ve had it where I just don’t take the next step and have to think about what I need to do before my legs will continue, as well as the brain fog and no clarity of thought. You have to make the best of what your given, although I know it can be difficult. Mine seems to have stabilised and my neurologist said after around 3-5 years it doesn’t tend to progress further. Good luck, I will continue to follow your journey. Big hugs, stay strong. Xx

I have had Cervical Dystonia and essential tremor all my life. And suffer from a lot of neck pain, which causes headaches sometimes. I had been to many specialist. When I went to a neurologist about 10 years ago she put my on a medication called, Premidone which is an anti convulsent. It has 90 % eliminated the tremor. I take it at night instead of in the morning before I go to bed so it won't make me drowsy the next day. I still have alot of pain on the left side of my neck, but limited shaking. I also had an MRI done of my brain to find out if there was any problems there. The neurologist told me I had Agenisis of the Corpus Collosum, Which means the Corpus Collosum which separates the two hemispheres of the brain is missing. Which explained alot of misdiagnosis of ADHD. I am also very high functioning. I would suggest you get an MRI of your brain.

Thank you so much for making this video! I can't describe the relief I felt to find someone going through the same kind of turmoil. I was just diagnosed with this in the past month. I am 38 years old. Depression, regret of not having made more of my time while I was healthy, anxiety for the future, and just having to deal with the involuntary movement all day long makes it incredibly hard to cope. Thank you again for sharing your experience. I dont feel quite as alone now. <3

I found your other video first and then found this one and I am literally crying. This is exactly how mine came on. The visual disturbance and then the head tremor coming more often. You have given me hope. and the depth thing I have that too.

I hope you have find some relief.I am still on my journey to getting the help I need...you are not alone in this.

Hi, thank you so much for your video blogs...I have CD but my journey has been quite different as mines due to neck trauma. I was incorrectly dx with MS after a severe neck injury left me with severe muscle spasms, tremors, partial paralysis and more horrible symptoms. I went through several batteries of tests two years apart and was eventually cleared of MS. After 10 years I received the CD dx and have since been on muscle relaxants, gabapentin and Botox injections. Without All of those treatments, I am virtually bedbound, crying from the pain and extremely depressed. I was recently referred to physical therapy when my symptoms worsened - dr was thinking epilepsy, but that was also cleared. The therapist made the most dramatic improvement over the other therapies. She also used the pressure points that you talk about in one of your other videos and once the muscles were released, I was able to start strengthening exercises. Its still really painful with days where the pain is off the charts but I have many days where my muscles just work and that is such a relief! Keep video blogging. One little comment can give someone else that one piece of missing information that can make a dramatic difference in their lives.

Hi, just found your channel! I have Cervical dystonia for 7 years almost, and found your channel looking for exercises recommended for people with cervical dystonia, at first noticed in your videos you didnt have any movement, and then here saw you have a small movement, well, mine compared is greater, i dont suffer pain, just neck tiring all day. I was operated last year with DBS which was fast, in the day and improved a lot my sympthoms, i will follow your channel! If you want to chat you can count on me, dystonia is hell in life, you have to adapt to it, and prevent situations that may worsen it, which is very hard. Really intrested in watching the exercices you were given, in 7 years, i couldnt find a good ways to look for self treatments.

At first when you said I have 2 kids I thought that's great, because I've always wanted at least one kid, but than realized how much harder it must be to be responsible for them with this disorder. I know where you are coming from and my next step is to find out if TMJ is causing my CD. I noticed the more active I am the more pain it causes me. If you check out my channel you will see that I get pretty active lol but after that I need a good nap. I wish you the best on this painful journey and hope you find the right treatment :)

So glad I found your video. And thank you for sharing your story. I was diagnosed with dystonia 7 months ago and I'm slowing learning how to deal with It and except it. Mine is similar... shaking neck and constant shoulder twitching. Have yet to make an appointment with the neurologist even though I was given a referral from my doctor months ago. I rarely talk about what is happening with me. And it's very noticeable that something is wrong me. Been taking a Parkinson's disease medication that helps somewhat. Anyways I'm just relieved that I'm not the only one and I can see that people are going through the same things as myself

Thx for being so open about your symptoms! I got exactly the same set of difficulties. Also years of depression and not knowing why my head was/is shaking. Botox works for me now every 3 months, also Propranolol (but this med can also make you depressed). For now i think everything that removes depression and anxiety (like group therapy) also helps to soften the tremor. I hope you keep on doing videos and give us an update again soon :D

I've been living with cervical dystonia for 20 years you need to talk to neurologist about botox injections it will stop you from shaking so much

I have a shaky head too. Mine started in 2003 in my right hand. I was diagnosed with Essential Tremor. Since that time, I have it in my head and on occasion, my left hand shakes with tremor. Although it is not dystonia, it is very similar. Mine gets worse in public places or if I am stressed. I know I have to live with this because there is no cure. I too, have a deep faith in God. I cast my burdens upon him . I am learning to live with it. You are a lovely woman. I pray God gives you what you need to overcome and still find great contentment and peace in this beautiful world. May God’s grace and peace be with you.

You are not alone. I too suffer from dystonia mine is Dopa Responsive Dystonia (DRD), when mine first started it was similar to yours. I regressed and went through many changes since and finally was diagnosed last November by which point I got really bad. I take levadopa as mine is caused by my body no longer producing dopamine, and thanks to it I can have some normality. I like yourself have had my ups and downs but after getting past the depression and anger, I generally laugh at it all the time. keep your head up; smile and laugh with your kids. One thing about dystonia is it makes you appreciate everything so much more if you look beyond your body and view the world as your 2 year old does. If you are noticing its getting worse then start doing all the things you always wanted to do (a bucket list if you will) make the memories now just in case the dystonia prevents them from happening later. Enjoy life, never let it get you down. Is dystonia a pain, yes, but you can't let it win.

Dystonia is a so difficult to deal with and I truly feel your pain. I was diagnosed with Cervical Dystonia Spasmodic Torticollis like you, when I was 40 years old, I'm now 71. Also like you, it took doctors about a year to diagnose me correctly. For me however I have Dystonia in my family history. We believe my great grandmother had it and my aunt on my fathers side also has it. You may want to check your family history as well. Over the years I have tried various treatments but mostly I endure the discomfort and pain. Unfortunately Dystonia is for life and there is no cure. Dystonia also affects us all differently. Mine was much worse 25 or 30 years ago and has gotten somewhat better, to the point I can live with it. I recently have been taking CBD oil which has provided some relief. People always say to me "how can you live with all that pain every day" and I always tell them, I don't have to look very hard to find someone else how has much much much more difficult than I do so I count my blessings everyday. Don't lose hope, keep the faith and God Bless.

Heartfelt and excellent explanation of how this is and how it's likely to be I've had DBS and even that is not working well better than without but so many variables within that hard to babe scientific. But for yours and kids sake be determined strong and a will to win I explain to everyone that reason I hold my chin is a serious neck injury and in the main they are all understanding so be confident and positive I'm not always but come round in the end and be brave so should you

It's really brave that you are documenting your process of being diagnosed and your thoughts on the whole thing! :) Watching your videos made my day. Don't get me wrong, I'm so sorry you are going through this. At the same time, it means so much to me to see someone else about my own age who is also going through almost exactly the same that I'm going through. I have pretty severe retrocollis and it was getting worse and worse over the course of 3 yrs before I was diagnosed this year. Today when I found your videos was the first time that I found someone talking about being around the same place in this whole mess/thing as I am :) You made a difference to me with your videos. And I think that is very brave. So thank you :)

God bless you. Thank you for your honesty.