Help

[Toniavis]

Hi I was diagnosed with dystonia a few years ago and am still being told. It's on my head and their is nothing wrong with me is their anyone who can give me some advice on how to be helped thank you

[Ali_H]

Hi,

I’ve found that the answer to the statement - ‘it’s all in your head.’ is ‘Yes I know, it’s a basal ganglia malfunction... same part of the brain as Parkinson’s and Tourette’s but a different response!’ This tends to shut most doubters up and followed with ‘what can you do to help me deal with this neurological issue or who can you refer me onto to get appropriate support?’ Will let most GPs know that you won’t be palmed off - taking a family member or an informed friend as a third person in the room usually gets a more proactive response from medical practitioners as there is obviously a witness to what has been said.

Also educating yourself about your particular type of dystonia and what helps you to ease things for yourself is also usedful. For example I find stretching my eyes open as wide as possible will ease my blepharospasm when I am particularly troubled by the rapid blinking.

All the best

Ali

[Toniavis in reply to Ali_H]

Thank to you ali-H that's very helpful x

[Supergrangran in reply to Toniavis]

I have generalised end spectrum dystonia that started in my neck and progressed. based on my experience I would strongly advise that any new symptoms you get do go online and research it. I have found many professional papers are american based and very useful. One example was my intercostal muscles became involved followed very quickly by the diaphragm and the throat muscles. I printed off the paper and took it to the doctor with me and showed it to paramedics as required and this helped me to get the medical attention I needed. Also be aware that dystonia falls into 3 categories...primary is genetic and secondary is trauma induced and the third which is very prevalent in the emergency room is drug induced and what that means is that should you ever need emergency treatment be prepared for the doctors to ask you if you take drugs as that is the one they are most used to dealing with. Its hard living with this condition without it being made out to be in your head or self induced! Good luck and I do hope this is useful to you

[peonies18]

I too was told by a gp who had never seen me before it was psychogenic. What's more they didnt even know about botox being used as a treatment for cervical dystonia and said somewhat scathingly what they inject your neck?? Yes, it is a well known if not so successful means of alleviating the muscle pulling. Not a cure mind you. I also have other family members who are similarly affected. Is it all in their head too? I suspect not.

[Toniavis in reply to peonies18]

Thank you hun, it's a shame that we are treated like this, otho ugh I have it in my legs and hips I have only. Been given pain meds and they don't do much to help x

[Ali_H]

I was initially told I was being lazy with my eyes by a gp with an interest/expertise in vision issues. Took a further 4 months to get someone to refer me on to a specialist ophthalmologist who took one look at me and told me in less than 5 minutes what I had and what my treatment options were.

I later dropped off to the gp a booklet on dystonia and pamphlets specifically on blepharospasm for her ‘perusal’ - and haven’t been back to her again nor will I ever (she’s not my named gp).

All the best

Ali

[Toniavis in reply to Ali_H]

I have just changed doctors Ali-H and she seems to be a lot better then any of my last GPS, I'm now waiting to see a phisio and the chronic pain team but have been told the wait is long x

[Ali_H]

If you can let them know that you will accept a short notice cancellation and this could speeds things up for you.

Ali

[Toniavis in reply to Ali_H]

Thank you hun i will do that x

[Ali_H]

You keep going... it does get better as support network is slowly put in place and coping mechanisms are developed.

Stay strong

Ali