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TOPIC: Spasmodic Torticollis

Spasmodic Torticollis 1 year 4 months ago #4041

I started suffering with spasmodic torticollis at the age of 32,6 months after my father passed away.Ive now had it for 15 years.My doctors didn't have a clue and at first sent me for physio,when that didn't help I was sent to the Hospital they admitted me straight away and I was there a week while they ran a series of test where I was diagnosed with dystonia.What I am wondering is although sometimes the botox works there are other times when I'm in quite a lot of pain and take diazapam. Do people manage to work? I have worked at my present job for 22yrs but it is getting harder and I'm in quite a lot of pain while there but I'm wondering if I do have to finish work will I get benefits? Thank you for taking the time to read this
Last Edit: 1 year 4 months ago by Bernie.McMahon. Reason: Moderator removed name of treatment centre
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Spasmodic Torticollis 1 year 3 months ago #4047

  • Richards
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Hi, I'm really struggling with mine too. I've only had it for 6 months but can't believe its severity or rapidity of progression. I was signed off work straight away and have had one lot of 5 injections so far...no sign of a change yet but it is only 4 days. I'm concerned that you say the Botox doesn't always work...and I'm concerned that my next one is not until the end of January...my sick pay ends one month after that. I'm just amazed that some people seem to be able hold down a job at all so well done you for that ! I'm a Head of Music in a school so my ability to do that job is just laughable! I ca't even look at the piano or the children, never mind start to do anything with them. I've applied for PIPs - assessment next week but it is difficult to know if it is the best move. You can get PIP whilst in work though if that's any help...
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Spasmodic Torticollis 1 year 3 months ago #4048

Hi Richards,you may find as it's your first lot of injections it may take a bit longer to take effect.I was orginally off work for 7 months and did end up claiming statutory sick pay.In one way I was lucky because when I went back to work I had to come off the department I was working on because even with the injections it was to painful.People do have different levels of pain with it so I suppose can manage to work depending on there pain.When I was first diagnosed I went for injections every 4 weeks but now I go every 12 weeks,with the professor who gives my injections he let's me manage my condition so if I'm in more pain I go for the injections sooner.I am alot better from when it was first diagnosed.It was like I went through different stages,I kept nodding so couldn't drink out of a normal cup, I couldn't drive or sit up because my neck completely locked to the left and was in so much pain.I find if I try and do certain things it can cause a lot of pain,like looking to the left,looking up and certain household jobs but everyone is different so hopefully you will soon find yourself getting more manageable.
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Spasmodic Torticollis 1 year 3 months ago #4049

  • Richards
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Thanks...I suppose it's just all new to me...and this inability to do things, for me is so frustrating ! I too have a travel cup otherwise the drink gets nowhere near my mouth :) saves a lot of washing, and I survive on microwavable meals which I can eat with one hand whilst holding my head with the other...just ridiculous. Playing the piano etc seems a very long way off !
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Spasmodic Torticollis 1 year 3 months ago #4050

It's probably sounds a strange thing to say but the longer you have the condition the more you find out about it and how to manage it.I found out if someone sits by me they have to be straight in front of me or to my right,also if I go to the cinema I have to sit near the back in the middle,it will get better than where you are now but will take a few more injections and a bit more time.I have heard of people where it's gone altogether or almost into remission but after 15 years of living with torticollis I have never had that,yet
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Spasmodic Torticollis 1 year 3 months ago #4063

  • Lee
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I know where your coming from in respect to Dystonia. I've had my neck Dystonia for just over a year and I'm currently on 6 lots of 6 injections of Botox and been unable to work all that time. Its been very hard coming to terms with how it changes your life. I feel I now have 80% of my life back but only 60% work life. My job is working in the Pharmaceutical Industry. My head feels like its in the right place to go back but my body at the moment just wont let me. Things will get better and it can be a long road. For me I talk to as many people as I can with Dystonia. To understand more about it. And to know that I'm not on my own.
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