[mhdavid1987]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3946

I didn’t no – I think I have an issue with my emails.

[mhdavid1987]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3811

Hi Robyn,

I think that is a great idea. We need to really bring attention to Dystonia as a whole I can’t see many places which are doing so other than this site and the brain foundation within Australia.

I’m of the believe it needs more media attention and potentially contacting media outlets to see if they’d be interested promoting awareness around the disease.

This is a question for all,

What current treatments are you undertaking? I’d like to hear because I’m currently looking at alternatives given the recent top-up botox injections haven’t helped, along with the upped dosage of Artane.

The only treatment that is working for me right now is Diazapem (Valium) unfortunately but in larger doses which is really distressing even though it doesn’t impact my work, it is more of a concern from my GP that I am taking such high doses to stop the spasms, so I am assuming he will be reluctant to prescribe them to me until I can get another appointment with my neurologist which I’m waiting to hear back.

Thanks,
Michael

[mhdavid1987]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3809

Hi Robyn,

I grew up in the Campbelltown region but now live in the Eastern suburbs for work reasons.

I’m thinking of speaking with my neurologist about potential authorisation for CBD oil as I want to test some alternatives. I do find meditation does help control my emotions. Have you tried Yoga?

The entire stigma around having CD is the way I feel people look at you, but I guess this is a hurdle everyone has to pass. Not many people have heard of Dystonia/CD, so we definitely need more awareness around the disease.

Please let me know about the next meetup as I’m certainly interested.

Thanks,
Michael

[mhdavid1987]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3807

Hi Robyn,

I work in the IT industry, so office work basically.

I like in Sydney, NSW.

It’s fairly annoying because I feel like I make people feel uncomfortable when the spasms start playing up and it now hurts more than ever mentally because I decided to move into contracting roles because I thought I had treatment under control so I am not permanent. Has anyone ever had issues with discrimination in the work place because of this disorder?

I’m thinking I know what has triggered the latest failure of treatment and that was due to exercising involving the muscles which were being targeted by the Botox. To be honest, I was on valium for many years and was able to stop without and withdrawals or symptoms because in my brain it was helping with an actual disorder/disease rather than being abused as a drug.

Have you heard of anyone that has tried or thought about using CBD oil as a treatment? I know it has wonderful impacts on all sorts of brain related issues.

Thanks,
Michael

[mhdavid1987]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3805

Hello,

My name is Michael and I was diagnosed with Cervical Dystonia over 7-8 years ago. I specifically have issues with my neck muscles which spasm and go out of control which are also exacerbated in stressful situations, especially when it comes to my working life.

Many years ago before the diagnosis I was using diazepam heavily until I was diagnosed and moved onto being treated with Botox without the need of using diazepam for many years. Unfortunately I’ve had failures in the Botox treatment and required dual treatments so we included an anticholinergic which was also working great with both that and the Botox.

I am now finding that recently I have had failed treatments and now gone back to multiple methods of treatment from Botox including top-up injections, anticholinergics and now diazepams to stop the spasms.

Life has become much more difficult as the disease I feel has progressed and my body has become adapt to the treatment. My work life is now being impacted severely due to the diazapam to stop the spasms.

Working is very difficult because I feel I make people uncomfortable with my spasms so I have been forcing myself to use diazapam to stop the spasms. How does everyone deal with work life?

Thanks,
Michael

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