Living with dystonia head tremors

[Sweetyp]

Hi all.. I just joined today and I have cervical dystonia in my neck which causes really bad head tremors.. it's very embarrassing in public..I was wondering if anyone one else goes through this and how you deal with it

[peonies18]

Hi Sweetyp. It certainly difficult at times dealing with obvious stares from people. Over time I have made a conscious decision to ignore them. I also find that men stare longer and more openly than most women. I feel it has made me stronger on the whole but I still have my moments raging about the unpredictability of dystonia.

[Juliet1962]

Hi I've had neck dystonia for 7 years now and I never get used to people staring. I'm a very self conscious person so struggle. I receive botox every 3 month with fairly good results regarding tremor which is a great help, Recently though I've had much more pain than usual in neck down to shoulders and bad headaches. Not sure whats going on and docs dont seem to be able to help anybody any ideas

[EveLM]

Hi, just joined here! I've had cervical dystonia for a long time now, had Botox treatment in the past but haven't seen anybody for it for a good few years now, I've just really tried to ignore it. But I'm waiting to see someone now as I feel my head tremor getting worse. It gets bad in really any social situation, whenever I try to talk to someone. I feel like I have to put my hand up to my head when talking to people as it's the only way I can control it!! Very difficult and people probably wonder why on earth do I always have my hand up to my head! It really dents my confidence and I just cannot relax out in public anymore. I'm just really looking forward to my appointment now, unfortunately not until September. So until then I'm planning to do as much research online so I can be fully prepared for when I finally see the doctor.