Alison is a Qualified Counsellor with neck dystonia (cervical dystonia / spasmodic torticollis).

Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).

My journey with cervical dystonia began in 2000, when my son was born. I started to notice that my head would shake from side to side but things seemed to worsen when my much loved dog, Rusty passed away three years later. Five years prior to this I had gone through the trauma of losing my first baby, due to a major abnormality and when I was eventually able to get pregnant again, it was a time mixed with emotions and anxiety. My husband became ill with M.E when my son was a baby and it seems that when my dog died it brought my anxiety symptoms up and out into the open, which led to a diagnosis of Generalised Anxiety Disorder. I was put on medication, which helped but I was becoming more and more aware of my head shaking in a no-no action, which became more obvious the more anxious I felt.

Every time I tried to work, the more I was aware of the tremor and my anxiety developing.  I had always worked in an office and I had to give up three office jobs as it was just too difficult to deal with.  I felt and still feel, that people could see the tremor and this was just too embarrassing to deal with. 

When I was home the anxiety and tremor lessened and so I spent more and more time indoors and I stopped going out socially.  Every time the doorbell rang, or I had to go outside my anxiety escalated. I felt I was going mad and my mood became very low. If I hadn’t had my son to keep me going, I really don’t know how I would have continued to go on. However, I had the love and support of my husband, who himself was very ill at that time and life was a struggle for both of us. 

Eventually I went to see a Hypnotherapist who helped me with the anxiety symptoms and this gave me the idea to retrain as a Counsellor, although the thought was pretty scary. I knew I would struggle to be around people but I knew I couldn’t continue as I was.  I researched courses in counselling and decided to do a course that only met up as a group once a month as I felt perhaps this wouldn’t be too hard.  My anxiety was extremely high each time I attended the groups and my tremor too was at its worst. I met some lovely people there but it was a real struggle to get through. In my second year there my issues regarding the loss of my baby started to surface and the Counsellor in charge of the group suggested that I see a Counsellor myself. 

I think for me that this was the turning point, as I had not had any counselling at all and I was able to at last address what had happened to me and over time my anxiety began to reduce. 

It was during this time that I understood how important it was to complete a BACP accredited course and realised that the course I had been attending for two years was not accredited. I wanted to be taken seriously as a Counsellor and the only way to do this was to sign up for another course that would give me the qualification that I needed. This unfortunately meant that the next course would be over three days a week for two years and I was extremely concerned about how I would manage with my tremor and the anxiety, but I was very motivated to become a Counsellor by then and knew I had no choice but to continue. I was given diazepam to help on the days I went to college, which seemed to calm the tremor but only the benefits only lasted a few hours.

During 2010 I went to see a physiotherapist for my symptoms of tremor, pain in the shoulder and a feeling that my head was pulling to the right, which meant I couldn’t hold my head very straight and she suggested that I had cervical dystonia. 

This was ten years after I first experienced symptoms and she referred me to a neurologist who confirmed the diagnosis.  He said the only real treatment was botulinum toxin injections into the neck and I had a few rounds of this initially which seemed to help, until I had a bad experience during an NHS clinic, where I ended up very bruised and feeling extremely poorly. I decided I wouldn’t have any more botulinum toxin and over the next few years I went to an alternative therapist, which seemed to keep the symptoms under control. I qualified as a Counsellor in 2013 and have now been in private practice for nearly six years. I’m very proud of this achievement, as I know how hard it’s been for me to get here. In 2017 I became an accredited member of the BACP.

Working continues to be a challenge as I feel under pressure to hold my head in a certain way, using sensory tricks to keep my head steady so my clients won’t see the tremor. I decided to start botulinum toxin injections again last year as my symptoms seemed to be worsening and I have had some physical therapy also. 

I decided to contact Dystonia UK as I thought there might be some people out there who would like to talk to a Counsellor who actually has the condition and understands the effect it can have on a persons’ mental health. I offer sessions face to face, over skype or telephone which can be extremely beneficial for those who are unable to leave the house.

If anyone would like to contact me to discuss booking a session please call 07891 010228 or email me at [email protected] Full details can be found on my website at alisonjoplincounselling.co.uk