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neck dystonia

larrallarra Posts: 1
edited 06/11/2012 - 8:50 AM in Neck Pain: Cervical
Ive had dystonia for few years now and getting botox injections which dont work, does anyone else have same problem, it gets me down so much, Ive lost my confidence completely, my driving is getting worse as I cant turn my neck, also Im looking for pillows that can help me sleep, Ive tried all sorts, thanks in advance.


  • I have cervical dystonia and I totally understand your frustration. Botox has never helped my neck despite numerous tries I have three things going for me that help make a huge difference. First of all I have a cervical Spinal Cord Stimulator, which although not implanted for the dystonia, it really helps in managing it. I also am on a rotation of 3 different muscle relaxers. I take one type for 3 months and then switch to the next and then switch again in 3 months. This helps keep the muscle relaxers more effective and was suggested by my PM doc. The third thing that really helps, is moist heat. Either via a moist heating pad or the hot tub, heat is very necessary.

    Are you being seen by anyone doctor in particular that may be experienced in neuromuscular disorders?

    I go through pillows like crazy trying to find the right one. Yeah right! So I make do with what I have.

    Welcome to Spine Health,

  • Hi larra! the timing of your post was inspired. I have had cervical dystonia for almost 17 years, and am being encouraged by my physiatrist to try a scs trial, at i am noon-responsive to Botox and Myobloc,dont qualify for DBS to due segmental aspect. However I've never heard of anyone on the dystonia bb who has had an scs. Also my Nuero gives me 7 doses of muscle relaxant a MONTH - which I think is quite barbaric. Do you really think the SCS helps, and does it each migraines as well? Thx, Lisa
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