Question:
I have been diagonsed with a condition called spaspodic torticollis which is a form of dystonia. It is apparently a neurological movement disorder, affecting the main muscle in my neck, shoulder and jaw. This muscle shortens and contracts dramatically. My head twists around but luckily I do not have the jerky form of it.
It is very painful and I am currently taking anti inflamatories, valium (as a muscle relaxant) and pain relief.
I am waiting on an x ray once the inflammation goes down.
The dr seems to have confuesed me, initially he sadi it was just a shortening of the neck muscle but then mentioned a neurological problem.
There is no cure, and treatment can consist of botox into the muscle.
IMy husband kindly massages my neck and shoulder every night which helps and apparently this 'episode' could subside soon 9althoug I have had it for over 6 weeks so far, and twice before in teh past 2 years.
I have looked on the web to understand it abit more, but I wondered if anyone has any experience with this condition and can suggest an alternative therapy, both to help the acute stage and also perhaps prevent further occurances.
I didn't know the best place to post, hope it is ok here but feel free to move.
Thanks
Bearlily
sorry about typos it is hard to typpe with right hand.
Dear Bearlily,
First I'm really sorry you have this and I hope it subsides soon.
I was going to suggest Reiki, but looking back at a previous thread, you know all about that! Have you looked at homeopathy?
Sharonx
I know, you are right, I have been trying to do reiki when I can but the all the meds I need atm to reduce spasm and inflammation can make my head abit woolly [&:]
Its funny you mention homeopathy-I do see a homeopath and rang her two days ago. This morning she I received a parcel with 2 remedies to help, so fingers crossed!
I was thinking of reflexology or acupuncture or some other energy /meridian medicine as well?? Perhaps i should post on the specific forums.
I think last night I was just feeling so fed up and useless, it is hard to describe :( but themornings are always abit more positive :)
Thanks so much for your reply-I haven't been on here for a while and it is so nice to have friendly replies, hats what makes HP so great;)
Bearlily
I've just sent you some Reiki .Why don't you put in a request in the healing and prayers forum. Good luck with the homeopathy,
Yes this is a lovely friendly place,
Sharonxx
Hi,
I know an excellent Sports Therapist with Dystonia, if you PM me your email address I will pass it on to her. She is also a co-ordinator for the Dystonia Society and also Sports Therapy Organisation, so she will have some useful info.
Rich
Dear Bearlily,
Spasmodic torticollis (dystonia) certainly isn't fun and there are no easy answers. I know 'cos I have it.
Thanks to the internet though, things are a lot better than they were and you'll be able to tap into some amazing people with lots of different ideas of things that have helped them.
For starters go to Abbie Collins' site www.stclinic.com Abbie runs a clinic in New Mexico and also has a home support network. There are some great tips on her site -- things that all ST specialists should know but few do.
Also look at the UK site www.dystonia-support4u.co.uk
Anthing that helps you stay relaxed and positive is worth making time for.
Best wishes, Nicola
It is very painful and I am currently taking anti inflamatories, valium (as a muscle relaxant) and pain relief.
I am waiting on an x ray once the inflammation goes down.
The dr seems to have confuesed me, initially he sadi it was just a shortening of the neck muscle but then mentioned a neurological problem.
There is no cure, and treatment can consist of botox into the muscle.
IMy husband kindly massages my neck and shoulder every night which helps and apparently this 'episode' could subside soon 9althoug I have had it for over 6 weeks so far, and twice before in teh past 2 years.
I have looked on the web to understand it abit more, but I wondered if anyone has any experience with this condition and can suggest an alternative therapy, both to help the acute stage and also perhaps prevent further occurances.
I didn't know the best place to post, hope it is ok here but feel free to move.
Thanks
Bearlily
sorry about typos it is hard to typpe with right hand.
Answers:
Dear Bearlily,
First I'm really sorry you have this and I hope it subsides soon.
I was going to suggest Reiki, but looking back at a previous thread, you know all about that! Have you looked at homeopathy?
Sharonx
Answers:
I know, you are right, I have been trying to do reiki when I can but the all the meds I need atm to reduce spasm and inflammation can make my head abit woolly [&:]
Its funny you mention homeopathy-I do see a homeopath and rang her two days ago. This morning she I received a parcel with 2 remedies to help, so fingers crossed!
I was thinking of reflexology or acupuncture or some other energy /meridian medicine as well?? Perhaps i should post on the specific forums.
I think last night I was just feeling so fed up and useless, it is hard to describe :( but themornings are always abit more positive :)
Thanks so much for your reply-I haven't been on here for a while and it is so nice to have friendly replies, hats what makes HP so great;)
Bearlily
Answers:
I've just sent you some Reiki .Why don't you put in a request in the healing and prayers forum. Good luck with the homeopathy,
Yes this is a lovely friendly place,
Sharonxx
Answers:
Hi,
I know an excellent Sports Therapist with Dystonia, if you PM me your email address I will pass it on to her. She is also a co-ordinator for the Dystonia Society and also Sports Therapy Organisation, so she will have some useful info.
Rich
Answers:
Dear Bearlily,
Spasmodic torticollis (dystonia) certainly isn't fun and there are no easy answers. I know 'cos I have it.
Thanks to the internet though, things are a lot better than they were and you'll be able to tap into some amazing people with lots of different ideas of things that have helped them.
For starters go to Abbie Collins' site www.stclinic.com Abbie runs a clinic in New Mexico and also has a home support network. There are some great tips on her site -- things that all ST specialists should know but few do.
Also look at the UK site www.dystonia-support4u.co.uk
Anthing that helps you stay relaxed and positive is worth making time for.
Best wishes, Nicola
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