Violent neck tic? Advice?

My name is Alice, I am nineteen years old, and was diagnosed with Tourette Syndrome.

For the past month or two I have had this 'head banging' tic that has only gotten worse. I wear a neck brace to try to save my neck, but I don't know if it is really doing much. It hurts to move my neck at all.

I called my neurologist, but he is currently on vacation. I can't wait much longer. I'm terrified that I will do permanent damage. Any advice would be greatly appreciated.

7 Replies

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  • Hi Alice,

    I haven’t much of advice but a word of encouragement is all. Would you be able to see another neuro or maybe seeing an occupational therapist who would be able to look at the practical side of support for your neck?

    all the best

  • Hi Alice, so sorry to hear about your terrible neck tic and pain you are in. Do you live in the UK? If so, can you email me and I can email a list of therapists in the UK to you. julie@tourettes-action.org.uk best wishes to you and hope this tic soon changes for something less painful or disappears all together!. julie

  • This probably isn't the reply you are looking for but it's bluntly honest from my point of view, so sorry about that.

    The best thing you can do is ride it out - I have had violent neck tics for almost a decade now - they have become a permanent feature of my Tourette's.

    Unfortunately I have sustained some neck damage, but you would be surprised quite how hardy the neck is!

    I found that wearing a neck brace actually made things worse because it not only restricted the tics but it made me think about them more because I had something around my neck (if that makes sense).

    I can honestly recommend anti-inflammatory meds to take away any pain and swelling.

    I honestly can't see how your neuro can help, short of upping you medication - tics have a habit of not going away until they want to!

    Again - sorry if this wasn't the reply you were looking for. Hope it's at least some help.

  • Hi Alice,

    I would agree with Alex - the neck brace will only encourage your neck to tic more, so ditch it.

    I would consider seeing an osteopath to check your neck is okay and to help 'even' it up - my daughter's neck tics when she feels/ the tic senses that her neck/shoulders are uneven and we regularly pop to the osteopath for a body check up so that the tics don't do any long term damage etc and she finds it really helps. I've done this with both my kids with Tourettes and its been worth it. PLUS Look after your neck as if you strain it the tic will want to aggravate it even more. Try getting someone to massage your neck/shoulders daily , perhaps use a warm heat cream or wrap a warmed heat wrap around your neck to help soothe.

    I would also consider distracting the tic - e.g. do something physical whilst listening to music. The music helps gain the tics interest and the physical allows you to regain the brain - body link and allow YOU to dictate what movement you want. Physical exercise is also a great way to gain respite from tics - a bout of exercise can give you a break for a period of time after. My kids skate, bike ride, drum, play instruments, draw etc to regain the focus they want and it does work although it can take practice at first. At one point we had 2 gym/exercise trampettes, one upstairs and one downstairs in our house so they could jump whenever they needed to offset tics and this really helped.

    If you can't do anything big, use gum to chew or have something to fiddle with in your fingers. Both these can really help and are not very noticeable to others around you. Avoid too much static time - watching TV or being on computer games. Move or keep a focus on something - e.g. even drawing or handicrafts can help. MY kids listen to music incessantly to help keep the tic occupied. I refer to the tic as like another person - not saying you have a split personality or schrizophenia but rather think what you can do to keep it focused on something of YOUR choice then it is less likely to interfere or cause disruption. My son sat his GCSE and A levels with his iPod in to use the music to distract the tics so he could focus on the exams. He's now at uni so it worked.

    Both my kids manage their tics med free and use a variety of methods based on the advice above. If you google Greg Storey Tourettes on YouTube you can see my son drumming or skating to help gain a break or control over the tics. We have worked with the BBC to increase awareness so you'll find quite a bit if you look. Its possible to do it med free as both my kids find it better than dealing with the side effects of the medication. But whatever you choose to do, try the above and let us know how you get on. We work on the premise of thinking what it is the tic needs and try to meet it or try to redirect it into something of our choice - hence the exercise/music distraction etc and in really worse case scenarios we try to stop whatever the tic is actually needing to do until it eventually gives up - but we only do this in extreme cases. Otherwise the first two options seem to be the approach that works best in our household.

    Stay positive, look after yourself and good luck. Let us know how you get on.

    Kim xx

  • Hi Kim, Your response to Alice is very useful to us too. our little boy is seven and a half and has been diagnosed about a year ago although we knew for a year or so before that but didn’t feel we needed a diagnosis until we started negotiating support at school. He has periods of no tics at all and periods when it is very strong and I have noticed that when the tics frequency increase his singing increases too. He also has a trampoline and a drum kit which helps. We are going to make sure that her has access to music when necessary especially she he has some writing to do. Kind regards

    Florence

  • I try my best not to use any medication and find music and the gym help and have also taken up photography

    That being said with reference to neck ticcs and the pain and damage caused i use diazepam when things get too bad

    i use diazepam at most twice in one week but might go a month without using it at all

    it relaxes me enough to give my muscles a bit of a break

    GPs dont like prescribing nut i badgered mine as i didnt want anyother meds

    i explained to him i just wanted enough to give myself a break once in a while and by not using them too regularly i wont build up a tolerance

    i get 14 2mg tablets whenever i run out they last me a couple months or more depending on my ticcs

    Everyone is different and we have to find what works to manage our conditions hope you find the answers you need

  • Hi Alice

    I don't have much advice because I am wondering the same thing, since I have Tourette's and i'm always worrying that I'm gonna mess something up forever and it doesn't help me feel better with adhd and ocd. But I want to say that I've heard of many people like this and I actually know of one and they have never damaged anything from it so don't stress and best wishes

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