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I have cervical dystonia and suffer from the stare of others

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I have cervical dystonia and suffer from the stare of others

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Cervicaldystonia

05/03/2019 at 10:31

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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Hello, I'm the first to talk, I hope I'm in the right place... I have cervical dystonia and the longer it goes on, the more it impacts my daily life. I feel like people are staring at me, that the girls I meet don't look at me very much... Is it in my head or do you have that feeling too?

Thank you very much...

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JosephineO

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07/03/2019 at 14:48

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JosephineO

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@Cervicaldystonia Thank you for sharing, I am very sorry to hear that you're suffering :(

Do any members have some advice?@Psulsayhi‍ @whoami‍ @orchid‍ @lizouille‍ @OliveJ‍ @LiCricket‍ @wrinklebay‍ @Ph1956‍ @MichelleMc‍ @Avives‍ @urll56‍ @epain10‍ @Rosaly‍ @CyberDezz‍

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Josephine, Community Manager

I have cervical dystonia and suffer from the stare of others https://www.carenity.co.uk/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-2752 2019-03-07 14:48:51

whoami

07/03/2019 at 14:59

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whoami

Last activity on 08/08/2019 at 14:21

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Hi have dystonia but spasmodic torticollis and it affects my neck I get botox injections every 12 weeks injected into my neck muscles which help with the pain and the fact my neck always want to pull to the left.ive had it 18 years now and still I am very conscious of it and if someone is talking to me or I'm trying to concentrate I start to nod.My husband says he hasn't noticed so I do wonder sometimes if I feel it's worse than what it is.

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Psulsayhi

07/03/2019 at 15:11

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Psulsayhi

Last activity on 22/03/2021 at 16:54

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Hi @Cervicaldystonia‍

I've dystonia tremors in limbs, more noticable in my hands. I use s rollator to help me balance whilst walking.

You're not alone feeling this way. If a person really wants to get to know you, will want to spend time with you.

Since I know I'm being watched whereever I go. To counter this I started going to comic cons and get all dress up in my favoourite character Xena warrior princess. When I notice someone starring, I challenge if they would like a photo with me, some do, some don't. At least I'm talking to other people, I wouldn't normally do. This helps me to focus on other people instead of me all the time.

Hope this helps.

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P. Tokarski

Cervicaldystonia

25/03/2019 at 10:03

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@whoami @Psulsayhi

Thank you both for sharing. I think sometimes people think I am drunk even though I don't drink at all. I feel like they avoid standing near me in lines in the bank or sitting beside me on the bus.

I imagine it is very liberating getting dressed and perhaps I am just imagining the stares (or increasing them) due to how low my self-esteem is concerning this.

When did you become diagnosed?

whoami

25/03/2019 at 11:24

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whoami

Last activity on 08/08/2019 at 14:21

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One of the stages I went through was nodding and I used to think everyone would be staring at me and maybe they were but that's there problem not mine.I still have the nodding if I get stressed and other symptoms but for me the botox is wonderful.I was diagnosed in 2001.

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Psulsayhi

25/03/2019 at 21:56

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Psulsayhi

Last activity on 22/03/2021 at 16:54

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I was diagnosed in 2012, dystonia tremors. I always had tremors since I was three due to cerebral palsy. In 2012 tremors in hands got worse, seeking medical advice. I had a brain scan, spparently normal. I was given clonazepam to calm them, it's does help but side effect is drowsiness.

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P. Tokarski

Cervicaldystonia

29/03/2019 at 09:41

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@Psulsayhi @whoami Have you tried botox? I find it has helped me so much too.

I was on other medication before and the drowsiness was a problem too, I would be so tired and sleepy throughout the day and spend the evenings on the couch. Ahh, life with a chronic illness!

Psulsayhi

29/03/2019 at 09:43

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Psulsayhi

Last activity on 22/03/2021 at 16:54

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not tried botox

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P. Tokarski

whoami

29/03/2019 at 10:06

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whoami

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@Cervicaldystonia‍ yes I've been having botox for 18 years,don't think I could have managed without it,sometimes it works better than others but for me it gave me back my life

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Mazza1959

03/04/2019 at 12:47

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Last activity on 14/08/2024 at 11:10

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@Psulsayhi I have cervical dystonia and spasmodic torticollis as well, I Absolutely agree with how botox *Dysport (in my case) injections gave me my life back and have had them now for 20+ years. Before I had the injections, I suffered terribly and tried to develop a number of "coping" mechanisms which included holding my chin, playing with my hair, trying to sit so that I can talk on my left side rather than my right. Also, I found that having a small amount of alcohol before going out gave me added confidence, not ideal but is recognised as helping us sufferers... I was depressed and quite reclusive at times until I was finally offered a lifeline with my regular 3 monthly injections and latterly I have even noticed that my symptoms seem to have improved (as long as I get my injections on time) and this has given me so much confidence I cannot tell you. I don't know whether it is because I have a different consultant administering the injections or if by some miracle, my symptoms are getting slightly better. I would never be brave enough to go stop the injections completely , but it does offer some hope to others (considering I have been a sufferer since I was 17 years old and am now approaching my 60th birthday. Unfortunately, the hospital where my injections are administered are currently having a funding crisis and my next injection has been pushed back by 10 weeks...(this will be 22 weeks post last injection). I have just heard this has been escalated to highest level so am keeping everything crossed that I get another appointment soon as I don't want to go back to where I was at pre-botox injections. With regards to whether people are looking at you, I always used to think this as well, however since I have met my second husband and have been much more open about my condition he has assured me that people don't really notice it as much as we think they do, the way I get around it is by thinking everyone has something about themselves that they are self-conscious of, this just happens to be ours but it is part of what defines us and makes us who we are. I know it is difficult but as soon as you come to terms with this condition, life does start to improve. Good luck and keep us posted xx

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