Hi, I'm new here. I was Diagnosed about 4 years ago. It seemed to come on relatively slowly-perhaps over the course of 2 years. Others noticed it before I did, telling me to hold my head up straight, or my co-workers teasing me about my head tilt when I was typing. The pain was more evident to me than my head tilting. But then it was there. The day I could no longer hold my head up without the prop of my hand. So within a few months, I went to a Neurologist.
The Neurologist diagnosed me with Spasmodic Torticollis and let me know the treatments available. He suggested we try Trihexyphenidyl to start. I asked him if it was offered in liquid form, because I despise swallowing meds. Well, within a few weeks, I was able to hold my head upright again! It truly was miraculous to me! I told people it was like I regrew one of my limbs! SOOOO HAPPY! There were some negative side effects-dry mouth, dizziness, and imbalance. But, i was more than willing to endure those, as the neck tilt was much more bothersome.
I guess it was about a year after I had been prescribed this, I was admitted to a hospital for a different condition. The doctors did not give my medication while I was there, which at first, I hadn't even noticed because my focus was on my other illness. But when my neck starting twisting, and the head tilt returned, I realized I had not been taking this med. But again, within a few days of resuming this med, I regained control of my neck.
Since I hadn't even realized I had not been given my med for awhile, I know I'm not just getting a pseudo affect from this, so I am EXTREMELY grateful this med works for me. I do notice, however, I still get severe pain and migraines stemming from the affected side of my neck. This occurs mostly when I am overly stressed, or I do something to aggravate it; such as, driving a longer distance, or even holding my head in a certain position for too long.
I was wondering if anyone else has had success with this med? If not, did you try liquid form-which of course, I have NO idea if that would even make a difference. And my other question is, has anyone been prescribed any other type of med that enables you to hold your neck upright, but you still get terrible pains from the ST?