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?
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Picachou
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Hi Picachou, I had a completely different experience taking trihexiphenidyl for my cervical dystonia.I had some terrible side effects;mouth ulcers,dry mouth,I lost my sense of self walking around like a zombie,I became an emotional wreck so it is great to see your experience was an optimistic one.The only thing that stopped my pain was having botulinum injections every 3 months.
I’m so sorry to hear your experience was so awful; although, in the beginning of taking the med, I had most of those symptoms as well, but since I was able to hold my neck up again, I thought the trade off was worth it. I forgot I had a few ulcers in the mouth too, but never knew why I had them. Perhaps it was from the trihexphenidyl as well!
Are you able to hold your neck up with the botulinum treatment? And how is your pain? Thank you for taking the time to reply to my post. It’s reassuring to know I’m not alone in this.
I had the botulinum injections every 3 months.At the beginning getting the injection site right was key.When the neurologist hit the right muscles I could hold my head up for about 10 weeks.These Injections became ineffective after 10 years then I opted for Deep Brain Stimulation.
It sounds like you have been through so much with this disease. I can't even imagine going through all of that! Was the Deep Brain Stimulation a successful treatment for you?
Hi Picachou,yes, what deep brain stimulation did for me was it gave me the freedom I craved.My life before having deep brain stimulation was almost non existent,I was housebound and in agony.I had the responsibility of looking after my 3 year old daughter who didn't fully understand the extreme pain I was going through.My family members had to take over her care.Post DBS my neck was straight again.I could not believe it.However I still experience pain in my neck and shoulders and take daily medications which do help,but nothing like the agony I was in prior to having deep brain stimulation.
What a blessing the DBS worked! I fully comprehend the difficulties you endured by not being able to hold your head up. It is pure agony. I'm so sorry for the emotional pain you must've went through with your 3 year old. I bet she's thrilled you're able to do things with her again. You mentioned you still have pain from the disease. I was wondering if you know why we're able to maintain our posture now, but still experience great pain with our disease? If I'm not real careful, the pain can knock me off my feet for a few days. I am also on medicine for ST, but nothing but rest usually works for me.
Hi Picachou, how are you doing now, 2 years later? Is Trihexyphenidyl still working well? By the way what doses did you take? and how much time did it take for the benefits to appear? Thanks
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Living with extreme Cervical Dystonia
Recently diagnosed Dystonia 
I have been referred to the Psychology dept,who have suggested a 6 week course called Better living with illness. Has anyone been on this?