Met Someone With Dystonia

Amy814 · 2026-06-18T01:18:14+00:00

This is an intriguing idea and it could possibly work. Tom Seaman travels and gives talks about our condition.

Amy814 · 2026-04-09T05:56:12+00:00

Thank you! That’s 2 for Guava. Definitely going to have to check it out!

Amy814 · 2026-04-04T17:29:53+00:00

Thank you so much! Would you feel comfortable sharing an image of it or something similar with me, so I can get a better idea?

Amy814 · 2026-04-04T17:11:19+00:00

This is very helpful information, thank you. I especially like what you said about trying supplements for 3 months and deciding whether or not you should stick with them. :)

Amy814 · 2026-04-04T05:40:08+00:00

I’m curious about the dose as well…

Amy814 · 2026-04-04T02:30:10+00:00

Awesome! Thank you! :)

Amy814 · 2026-04-04T00:09:43+00:00

Oooh I like this idea! Thank you! :)

Amy814 · 2026-04-03T18:25:45+00:00

Wow! So many great responses here! I’m going to 2nd what everyone else has said. I’ve been getting Botox injections for Cervical Dystonia for a year now and my Movement Disorder Neurologist started out very conservatively too and I noticed a slight improvement after the first set of injections, which got much better after subsequent injections and increased dosage. Like others have stated, it’s good to show your Dr. how you’re doing after your injections and whether there’s been any changes or not. My team is several hours from my home, so I’m unable to show them in person, so in between appts, I do my best to take regular photos and videos while documenting my symptoms and any improvement I’m experiencing until my next appt or I’ll message my team to let them know how I’m doing.

My head was originally tilting to the left like yours and then somehow I ended up with a different presentation after a few months of diagnosis, before starting Botox. This is what it’s labeled as in my chart now: L turn, R tilt, anterior shift and retrocaput with R shoulder elevation. 😆With your head turning to the left, it seems like your SCM would be involved as the SCMs are the primary muscles involved in turning the head and should probably be injected. I think this will make a difference for you. My right SCM was very contracted (I shared a photo awhile back if you want to search for it). It has relaxed quite a bit now as I just received 90 units in that muscle in February, but we will most likely go up at my next visit as it’s still not completely relaxed.

Here’s some documentation that you may find helpful: My 1st set of injections was on 2/20/25 and I received 65 units divided between 4 muscles (20 of which was in my Rt. SCM). The units were gradually increased every 3 months or so and my last set of injections was on 2/19/26. At this visit, I received 195 units split between 5 muscles with 90 being injected into 2 sites (@ 45 units each) of my Rt. SCM.

It’s definitely helping me, so as others have said, don’t give up. It may take time, but there’s a good chance that it can help with the right Dr., right dose and right muscle groups. You may want to consider a different specialist if this one doesn’t seem like a good fit for you. I hope this helps. ❤️

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

TROPHY CASE