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TOPIC: Neck Braces

Neck Braces 5 years 8 months ago #798

  • leo
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Hi

I have been living with Dystonia for the last 2 years and have just returned to the world of work at the start of this year. It has taken me sometime to come to terms with the life i lead now, as opposed to the active and sporty one i used to pursue. Finally though, i feel as if i have got my head around it.

Botox injections worked the first time but since then have had no effect, despite this i am told that there are other strains of botox that could be successfull.

What i am keen to know is if there is anyone who has designed a comfortable and not extremely intrusive neck brace that can be worn to combat the neck spasms. I have been experimenting with some of my own and have recently made a plaster of paris cast of part of my neck. When i strap this too my neck i can stop the spasms. I would like to get it moulded in plastic but dont know where to look for this.

If anyone has any further ideas or owns a neck brace that helps (not for all day, just when out walking) then please contact me.

Leo
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Re: Neck Braces 5 years 8 months ago #799

  • Gill
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Hi

I was not aware that it was not advisable to wear a neck brace as they cause the muscles in the neck to become lazy for want of a better word but i understand why you would want to wear one especially when your head is twisting all day even with Botox and medication of which i take 6 every 4 hrs every day !!.I did at first put a firm sponge type on (the ones they issue in the hospital) and put it on back to front as my neck would twist and go backwards so it did help but my consultant said under no circumstances should i use one but just for it to stop would be wonderful but we have to keep positive that one day they will be able to find a cure. I have my injections via EMG which gives me more relief but nothing is going to be 100%, perhaps you should ask if that would be more beneficial for you.

Regards
Gill
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Re: Neck Braces 5 years 8 months ago #800

  • ABWhisky
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Hi

I also have CD but have never worn or been advised to wear a neck brace. In fact I was also under the impression they are not a good idea but I am no expert so I would talk to your neurologist first. Have you tried both A and B strains of toxin? I have tried various meds and find low dose clonazepam works best for me, combined with gentle stretching of the neck muscles and relaxation tapes to help me sleep. A hot bath and a one of those bean bag things you heat up in the microwave and then put around your neck are also beneficial.

Some people also say suggest magnessium, zinc, B vitamins and taurine/GABA supplements help but again check with your GP especially if you are taking any meds.

Everyone is different and I find every hour of every day varies so good luck and let us know if you find something that helps.

Alison
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Re: Neck Braces 5 years 8 months ago #844

  • Bev
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I use a soft neck collar when I have to walk and funnily enough I wear it back to front as it seems to help support my neck but only slightly. I wear a scarf tied around it sometimes.The Orthotics dept at the National tried to fit me with a special torticollis collar which was enormous and had a high side on one side and came over my shoulder. It seemed to help when I was completely still but as soon as I moved it came undone and fell off. The lady fitting it was amazed at the strength of my neck pull as she stood against me to try to hold it in place and I was practically pushing her over and I'm quite small! I find a travel cushion with beads helps when I am sitting or lying down as I still have some mobility as it is horseshoe shaped but the problem is when I need to move and walk. I pull the hair at the back of my head really hard but my arm gets tired quickly. This condition is so exhausting!
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Re: Neck Braces 5 years 8 months ago #846

  • Gill
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Hi Bev,
Yes it is exhausting and drives me mad, i too put a bean bag around my neck when sitting or in a car, when i go abroad i use a blow up cushion, not as comfortable but i am not sure if they would let me take it through customs ??..also i have very painful shoulders and the muscles in my upper arms are now giving me problems but not sure if thats thro the injections or the Dystonia ??.I also use a special heat pad that goes over my shoulders and it is shaped in a way that it goes between my shoulder blades as well.I try not to talk to my friends and family about my condition as i think they are now bored with the same topic as i have had this condition for several years so its so nice to have this website and talk to others that have the same condition.
Regards
Gill
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Re: Neck Braces 5 years 3 months ago #1395

  • Supergran
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I find a neck brace helped me in that the heat it gave my muscles was good for the pain but I never wear it for longer than about 15-20 mins at the one time. My doc said it was alright so long as it was not for hours because that affects the strength of your neck muscles. I have not needed this since I started epilium tabs.

I can also relate to the family/friends situation and feel quite withdrawn from family life just now. i cant keep up with them and they do not accept that I cant do late nights, going out to restaurants unless I am having a good day. I am finding that my daughter in particular goes out of her way to pick fights with me to the point were I feel really quite vulnerable and intimidated within my own family. This is a really isolating condition to live with and these forums are a god send.

good luck
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