Anyone else have cervical dystonia?

Posted by kevinkelley @kevinkelley, Nov 2, 2015

@Kaia Hi Kaja, this is Kevin Kelley... just read your post on Mayo Clinic.. I too have and do experience Very Similar symptoms as the ones you described of your daughters...can honestly say, I have tried a very great # of various seizure medicines; I had the VNS and with that upon its battery cycle and the replacement of, experienced an occurence of which I gladly would share; said with zero exaggeration, I experience seizures if not daily than def. bi-wkly and with that those the dystonia movements as well... should there be anything in my history of those that you would like to know, don't hesitate to ask, I will gladly share... should you find anything that is very helpful I would be thankful of you to share thanks, Kevin Kelley

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moldybrain | @moldybrain | Aug 3, 2023

In reply to @shenaaz "I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME..." + (show)

Me!!!
Have you found anything to help. I live my life in pain 24/7

donnahanford933 | @donnahanford933 | May 22, 2024

In reply to @shenaaz "HI, I AM CURRENTLY ON BACKLOFEN, TRIPELENE AND RIVOTRIL. I ALSO HAD BOTOX INJECTIONS BUT THE..." + (show)

I forget the technical terms but my spinal surgeon zapped my nerve ending in that part of my neck/upper shoulders/ upper back and the relief is dramatic‼️ In 4 years I have had it done twice and will need it done again soon - within the next 6 months. It’s outpatient surgery.
I tried Botox but it made my head drop worse. Baclofen didn’t seem to help and it made me feel sleepy all day. I eventually have had to go to round the clock pain meds but I also have Spinal DRegeneration and Fibromyalgia too.

cranberrry | @cranberrry | May 19 10:41am

In reply to @shenaaz "I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME..." + (show)

I have cervical dystonia/spasmodic torticullis, and am in pain but I have a high pain tolerance and just got used to it over the years. I get Botox every three months which sometimes gels and sometimes not. My first treatment was physical therapy with a specialist in this. I worked hard and it did help with the range of motion and the severity of spasms. Then the Botox while still doing PT, but still kind of the same results. I have done acupuncture as well (didn’t do much for this issue but helped with neuropathy). I then requested a chiropractor so could not initially do much in the way of adjustments because my neck, shoulder, and upper back muscles were solid as a rock. He used a TEMS machine and some massage with a power tool (that’s what it felt like at least), and it helped (with the pain) a little more each visit. Then I paid out of pocket for a sports massage. The therapist worked directly with my chiropractor. The first visit was all about him feeling where the issues are, but it was still like a massage. That did wonders for my pain for a few days. I don’t know if it was the path of treatment I took, but that massage was great because I didn’t realize how bad the chronic pain was until I got a bit of relief. However it didn’t stop my torticullis, sadly. Long reply, but maybe someone can relate or got a good suggestion from this?