Cervical Dystonia: “Medical profession thought I was making it all up, I couldn’t go back, so for the next 17 years I just tried to manage on my own!”

Published 26 Jul 2023 • By Lizzi Bollinger

Today we are talking to Marianne, a member of our community, who suffers from cervical dystonia her whole life. Marianne tells us about her diagnosis, and its impacts on mental health and everyday life. She also describes her current treatment regime and gives advice to others, living with chronic conditions.

Discover her story!

Cervical Dystonia: “Medical profession thought I was making it all up, I couldn’t go back, so for the next 17 years I just tried to manage on my own!”

What is cervical dystonia?

Cervical dystonia, also known as spasmodic torticollis, is a painful disease in which the muscles in your neck contract uncontrollably, turning your head to one side or twisting it. The head may also uncontrollably tilt forward or backward when living with cervical dystonia. 
Cervical dystonia is a rare illness that can affect anyone at any age, but it most frequently affects women in their middle years. In most cases, symptoms develop gradually until they stabilize at a certain point when they don't significantly worsen. 

Hi Marianne,

Thank you for agreeing to tell your story to the Carenity audience.

First of all, could you tell us more about yourself?

Hello, my name is Marianne McGunigle. I am 64 years of age and I live with my husband Brian in Leicestershire. I have 2 grown children, Charlotte and Mavera and a lovely Granddaughter called Eva. We have a dog called Honey who is a Cavachon (King Charles cross with Bichon Frise) and a black fluffy cat (rescued when he was a kitten) called Jackson. I have worked for the NHS for 18 years. I work as a medical secretary/PA to a Forensic Consultant Psychiatrist.

Could you tell us about your diagnosis journey. When did you first notice symptoms? How did you get diagnosed?

I live with Cervical Dystonia. My first experience with was when I was 17 bending forward to get a light for my cigarette, I noticed my head tremble. Following this incident, I started to notice my body tremble more and more. At that time, it wasn’t too troublesome, so I just used to laugh it off. However, about 2 years later, my symptoms started getting worse, and I started to feel that I couldn’t support my neck properly nor could I move it fluidly anymore.  My shaking was also getting progressively worse, and I also started to experience panic attacks.

I was a young girl and it really started to affect my confidence. I found my condition excruciatingly embarrassing and started developing coping mechanisms to try to disguise my shaking. I would play with my hair, put my hand under my chin, ask people lots of questions to take the spotlight off me. I didn’t/couldn’t confide in anyone.  People often asked me if I was ok – I hated that question and got very defensive.

Eventually, I spoke to my mum about it, she encouraged me to go to see my GP and get some help. I made the appointment and explained my symptoms. He gave me a prescription for some tablets. I was so relieved, I thought this would make everything ok and I would go back to “normal”. At the follow-up appointment 4 weeks later, I told the GP that I was feeling better and, on reflection I probably over exaggerated this. The GP then said that the tablets had been “placebos” and therefore there wasn’t anything wrong with me… I seem to recall him saying I was being “hypochondriacal” !  I was gutted, and so upset. 

The result of this consultation made my condition flare up again. I now felt that as the medical profession thought I was making it all up, I couldn’t go back, so for the next 17 years I just tried to manage on my own – Some days were horrendous, some days not so bad. I used to bang my head on the wall to try to stop the symptoms. I often used to get home from work, curl up in a ball on the settee and cry for hours. I felt like a freak. 

When I was 37 years old. I had had a particularly bad flare up of whatever my condition was (unknown at this time). By this time, we had moved, and I went to see a different doctor. I was diagnosed with essential tremorsHowever, the GP I saw admitted that he was not familiar with this condition, it was not his specialty and referred me to neurology at Leicester Royal Infirmary Hospital.

I attended my appointment with my parents and was seen by a Consultant Neurologist. He said he wanted to check for things such as Parkinson's, MS and other neurological diseases. Eventually he informed me that I had a rare condition called Cervical Dystonia (shaking) as well as Spasmodic Torticollis (hence the neck turning to one side). At last! I have been given a name to my condition! The next step, I was informed, would be to attend the Botox clinic at Neurology. 

How did you feel when you were diagnosed? Did you receive enough information to understand the disease?

After having the conditions for so long, having a diagnosis was a very welcome breakthrough. I tried to research the condition myself, but the internet was not so user-friendly in those days. 

When I went for my first assessment at the Botox clinic, I was quite surprised to receive the injections there and then. The doctor explained to me how the Botox would hopefully help my condition, and that I would need to come every 12 weeks or so once the Botox started to wear off. After this first injection, I noticed some improvement, but it wasn’t dramatic. At my next appointment, we tried a different form of injection called Dysport. Following this, my condition seemed to improve a lot. I finally felt confident to be able to talk without using my hand as a prop. I was very happy. I noticed that my symptoms started to come back around the 10 + week mark but was reassured that I had another appointment in the not-to-distant future so was able to cope with it psychologically. 

Are you satisfied with your current treatment?

I am satisfied and very grateful in so far that I do get my injections and they are free thanks to our wonderful NHS, however things could be improved, certainly with regards to the appointment systems at my hospital.   

There has been a steady stream of different doctors at the hospital, it seems like they struggle to keep their Botox doctors. There are now far too many patients for the number of medics to be able to keep to the required 12-week appointment. I am now lucky if I get an appointment within 18 weeks and frequently end up having to complain to get an appointment so that I don’t have to take sick leave from work. I am very disappointed that I never get given a follow-up appointment date now when I go for my injections. I find it so stressful and start to get really anxious when I don’t hear from the hospital to schedule my next appointment.

I am surprised that during my treatment, which spans around 30 years now, I have never been offered any other investigative procedures. I have never been offered psychological therapy. I did have some physiotherapy once which was very helpful, but it was removed due to cutbacks.

What is or has been the impact of conditions on your life? What do you think is the most bothersome part of your illness in your daily life?

The most bothersome part is when I feel the symptoms coming on and I struggle to communicate and eat in public. I become a bit reclusive at these times. If it gets really bad (if something stressful occurs towards the end of my cycle) then I struggle to drive and I have to take time off sick from work.

Before I was diagnosed and offered treatment, my condition had a massive impact on my career. I think I could have had a much more successful job if I had never developed the condition or if I had come to terms with it and been offered counselling, psychological therapy, and Botox treatment much earlier. 

What advice could you give to Carenity members also living with chronic illnesses?

The advice I would give is to talk with others. If you find it too embarrassing to talk to friends, share your feelings on forums such as these. 

One of my biggest breakthroughs was when I went on a training course about Linguistics. One assignment was a presentation on a subject close to your heart. As many will empathize, I have never done a presentation in my life due to my condition and the thought terrified me.  I decided to do a presentation on living with Cervical Dystonia. I got a standing ovation from the rest of the class following my presentation. I got through it! It was very emotional. Everyone in the room said that they had never heard of the condition, and it was a revelation.

Any last thoughts to share?

Over the past few years, I have learned to “face my fears” and not to be embarrassed. Even though Dystonia is a neurological illness, it has a major impact on mental health.

I have come to terms with the fact that this is a condition that is not going to go away, it is chronic and lifelong. However, with treatment and my own therapeutic methods there are lots of things that I can now do, and I refuse to be embarrassed or make excuses for the times when my shaking is uncontrolled or my neck won’t stay in one place. I have learned to love myself for what I am and who I am. I have total empathy for others, and I think this has made me a nicer and more understanding person. THIS IS ME – THIS IS US!

With love

Marianne xxxx 

A big thank you to Marianne for this interview! 

Did you find this story helpful?  

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Take care of yourself!  

avatar Lizzi Bollinger

Author: Lizzi Bollinger, Health Writer

Lizzi is a content creator at Carenity specializing in writing health articles. Lizzi holds an MBA in Corporate Social Responsibility from Audencia Business School in Nantes, France. On the personal side, Lizzi... >> Learn more


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