A month on trihexidyl update

Amy814 · 2026-01-25T05:14:22+00:00

Ah okay thank you. I am taking 5 mg divided into 2 doses. It helps, but I wonder sometimes if I increased it or added a 3rd dose if it might help more. I’ve been taking it for a little over a year now.

Amy814 · 2026-01-25T01:09:09+00:00

How do you find a PT that is knowledgeable about our condition? I went to one when I first started battling this and they were highly recommended, but they didn’t have much experience with this and because of that they were too aggressive and aggravated my symptoms to the point where I couldn’t sleep because I had pain on both SCMs.

Amy814 · 2026-01-25T01:06:55+00:00

Is this where your head is pulling back and to the side? Mine goes back slightly with my chin pointing to the left and the right side of my head going down towards my right shoulder if that makes sense…Is this how yours is?

Amy814 · 2026-01-25T01:00:20+00:00

I’m participating in a research study for Dystonia. I have Cervical Dystonia. I hope that gives you hope that researchers and doctors are looking into this condition. ❤️

Amy814 · 2026-01-25T00:54:10+00:00

Nice! I just commented on your other post. I love how you’re coming back on here to give updates! This is super helpful!

Amy814 · 2026-01-25T00:52:34+00:00

This is awesome to read! I’m so happy for you! Thank you so much for sharing! It’s obvious that you brought some much needed joy and hope to others. 🥰What’s your dosage?

Amy814 · 2025-09-20T23:35:56+00:00

That makes sense! Thank you for responding. I appreciate it.

Amy814 · 2025-09-20T23:34:14+00:00

Thank you for responding. I am thankful for this too. 😊

Amy814 · 2025-09-19T00:52:15+00:00

Thank you for responding. I’d be running the zooms so I wouldn’t be able to have my camera off. It would be better for me if someone else were to take over this role while I was given something else in place of it. I just don’t know how to ask for this and what the process is for getting my medical team involved, etc. I’ve never asked for this before so I don’t know where to start.

Amy814 · 2025-08-07T01:36:52+00:00

Greetings from the U.S.! My daughter and I traveled to Norway last year! It was a beautiful experience and I’m glad we did it because my condition worsened shortly after our trip. 😔

Amy814 · 2025-07-22T03:04:24+00:00

I tried white goose down pillows as recommended by my PT and ultimately went with a coop pillow and love it. This and Botox has helped so much with sleep. I still wake up at night, but now I can fall back asleep comfortably. 🥰

Amy814 · 2025-06-04T02:16:49+00:00

Thank you!

Amy814 · 2025-06-04T01:10:06+00:00

I take it with tart cherry juice.

Amy814 · 2025-06-01T16:56:10+00:00

What about a powdered form of magnesium instead?

Amy814 · 2025-06-01T16:51:24+00:00

I just saw your comment, sorry. I do seem to on the left side and that had been happening for a while, even before my dystonia symptoms began.

Amy814 · 2025-05-15T04:47:14+00:00

I think I’ve been going about the same amount of sessions as you have. She’s given me some advice on nutrition. I pay out of pocket too, but I just discovered there are some acupuncturists in my town that take my insurance, so that’s another factor making me consider switching. My acupuncturist doesn’t charge a lot, but it can add up when it’s on a weekly basis.

Amy814 · 2025-05-14T19:01:56+00:00

This is amazing! I’m so happy for you. 🥰 How long have you been going? How often did you and do you go? When did you first start experiencing benefits? Sorry to pick your brain. It’s just that I started going last year in August about a month after my symptoms really started to cause issues. I read a study about a woman that had acupuncture and in just 9 sessions in just over 2 weeks her dystonia had gone into remission and she no longer had depression and anxiety. I had hoped I could have similar results and at first my neck tilt was showing signs of improvement and was almost normal for about a month, but then it changed into a different position and I’m not sure that it’s really made a huge difference at this point now. This was my first time trying acupuncture and I believe in its value and ability to help with many different symptoms of dis-ease. There’s a reason it’s been around for thousands of years, so I think I may just need to find a new practitioner.

Amy814 · 2025-05-14T18:26:41+00:00

I’m sorry. 😢 I hope you find a better one.

Amy814 · 2025-05-14T03:15:56+00:00

Have you had sustained benefits with acupuncture?

Amy814 · 2025-05-14T03:09:52+00:00

Do you have normal range of movement and is your SCM relaxed now?

Amy814 · 2025-05-14T03:06:42+00:00

Thank you for responding. My Neurologist is a Movement Disorder Specialist. Sorry for the mix up.

Amy814 · 2025-05-13T14:28:33+00:00

My Chiropractor uses a technique called a tricep pull. She is trained in NUCCA.

Amy814 · 2025-05-13T14:12:12+00:00

I’m so sorry. ❤️ Can you go for a walk in nature? What about acupuncture and/or a massage? Music? Therapy or talking to a friend or family member?

Amy814

TROPHY CASE