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Hear from a XEOMIN Patient with Adult Cervical Dystonia - XEOMIN®

What’s It Like Being An Adult With Cervical Dystonia?

How adult with cervical dystonia symptoms started

I worked in a doctor’s office and within a 2-week period my head completely pulled over to the right-hand side for no apparent reason. It was just stuck there. My general practitioner right away said it was cervical dystonia. But he made me feel like it was all in my head or psychosomatic. He told me to go back into the waiting room and show my mom that I could be okay and that there was nothing he could do for me. So then I went on for several years just struggling with it on my own.

How difficult living as an adult with cervical dystonia can be

My head turned purely to the right; I had a lot of trouble bringing it back to center and a horrible time bringing it to the left. So my life was turned upside down. I was so self-conscious and uncomfortable that I ended up having to leave my job. I would date and be teased about it. It really destroyed my self-esteem. I felt like a freak, it was so obvious. And it also started to restrict me. There was no way I could ride a bike, read, walk, drive, and eat without it being extremely difficult.

I was sort of fortunate in that I didn’t have excruciating pain, but it is the pulling feeling, twisting motion that you’re constantly fighting. It becomes exhausting, and after a while you pretty much just have an ache all the time. Even if I were to let my head go where it wanted to go, it was still such an abnormal position. Being in that abnormal position long enough, you’re going to be really uncomfortable.

Individual results may vary.

How XEOMIN treatment began

I wasn’t treated for many years before XEOMIN was introduced. Instead I tried surgical options, nerve surgeries. They worked for a while, but when my symptoms started returning it was time to do something else. I was the one who mentioned XEOMIN to my neurologist. He said, “Sure, we will give it a try.”

How XEOMIN has helped me

After the first set of injections, it did start to help. And it still helps now. Without XEOMIN, I would be extremely uncomfortable and my head would be falling down toward my shoulder. It would be a real struggle.

There has been definite improvement. When I am on treatment with XEOMIN, it relieves some of the pulling pain and tension. Without as much pain and tension, I can focus more attention on other things in life. For example, at concerts (I love music), instead of sitting with my chin on my hand and just focusing on trying to hold up my head, now I can pay better attention to the music. I feel it’s important to share my story so people know they are not alone. I was personally inspired by a quote from Michael J. Fox that says, “Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way to go through it.” I hope my story can help others the way that his words helped me. After all, we are all in this together.

NOTE: Individual results may vary.

Looking for another patient's perspective?

Watch the videos and learn about Noel's experience.
Noel's Diagnosis
Noel's XEOMIN Experience