Support us Your stories Living with stories Julia's story Julia lives with neck dystonia (cervical dystonia). Here she shares her story of living with dystonia and pregnancy. 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). I want to share my story of living with dystonia and pregnancy. I thought it would be fitting to share a positive story which I hope may help other women as there are not many articles or stories of pregnancy and dystonia. When I was diagnosed with cervical dystonia at 26 my life completely changed, but I wasn’t going to let it stop me from living the life I always wanted. My life may have been adjusted but it was still the same as any other young woman. When the time was right, I was determined to find out as much information as possible for myself regarding pregnancy and dystonia. I researched online for hours looking for anything that could help ease any anxieties about getting pregnant and how this would affect my dystonia. I found a useful video which gave some anecdotal information regarding how pregnancy may affect the body and the continued use of botulinum toxin, however as with any drug treatments and pregnant ladies there are no real drug trials conducted. I have found that I don’t usually fit into the ‘normal’ box with any treatments I receive and often have unusual side effects, or the outcome is not as clinicians would have expected. You can imagine my worry about stopping treatments. I work in healthcare so knew I would have to stop any oral medications and was fully prepared for this, but what I did need help with was if I could continue with my botulinum toxin treatment. For me, getting these injections has been a game changer and without them I wouldn’t be able to function and be as able as I am. I was still worried about how stopping my oral medications would affect my dystonia so I sought advice from my consultant at Walkergate Park Hospital, Mr Hawthorne. We discussed the pros and cons of continuing with botulinum toxin treatment during pregnancy and that for some ladies pregnancy even helps the condition go in to remission. I didn’t want to get my hopes up, but I hoped that would be me! I decided to wean off my oral medication and continue with the injections, but at a lower dosage than I usually received. Mr Hawthorne was a great support throughout my pregnancy and talked to my antenatal team to support me when it came to delivery. We discussed medications that I should avoid which are typically used during labour and put a plan in place for an early epidural to minimise any flare up of my dystonia. As it turns out my dystonia was much better during my third trimester and I didn’t require any botulinum toxin after week 28 of my pregnancy and my next treatment was planned for six weeks postpartum. I also did not need the epidural or any medication (other than two paracetamol!) during labour and within five hours gave birth to a baby girl weighing 5lb 14oz. Maybe it was the anticipation of finding out the gender of our baby or being used to pain that meant I managed without strong pain relief! Luckily my dystonia did not flare up for a few weeks after the birth of our daughter. I am breastfeeding and continuing with botulinum toxin treatment at a reduced dose with the support of my consultant. We are both doing well, and she is thriving! I hope my story helps others overcome any doubts they may have about starting a family and brings a smile to the faces of others. Dystonia doesn’t mean you have to put your life on hold and having a positive attitude always helps. The body is amazing and mine continues to astound me every day.