Before taking early retirement Sue was an English Teacher in secondary education. She is grateful that TN didn’t strike whilst she was still working!
Originally from the north east, Sue has gradually moved south to the Bristol area via Yorkshire and Warwickshire, teaching in local schools with each move. She has also worked voluntarily as a counsellor, home tutor and as a representative for the Marie Curie charity.
TN crept up on Sue with prodomal pain beginning in 2013. After three years of increasingly severe symptoms, unnecessary dental work and repeated misdiagnoses, she had a successful MVD in 2016. Part of making sense of it all came from joining TNA UK and after attending the annual conference volunteered to join the telephone helpline. Recently Sue was delighted to be asked to join the Executive Committee.
Sue still regards herself as a TN sufferer such was the the profound effect the condition had upon her and remains committed to supporting the association in an effort to raise awareness about TN.
Remaining pain free, Sue has resumed her interests enjoying yoga, singing in a choir, embroidery, cake making and cooking. She walks regularly (no longer worrying too much about the weather) with her husband and Golden Retriever, George, in between helping out with her first grandchild.
Professor Joanna M. Zakrzewska BDS, MB BChir, MD, FDSRCS, FFDRCSI, FFPMRCA, FHEA
John is not a sufferer himself but has witnessed his wife Sue, now Chair, go through her TN journey. Watching the ever increasing suffering of his wife and the various misdiagnoses was a difficult experience as there is so little that one can do to help. Thankfully the MVD was the solution. He joined as a trustee to be treasurer when the vacancy arrived.
John is recently retired after 35 years in software project management and before that 15 years in mechanical and then telecommunications engineering. He was encouraged to become treasurer as there was a vacancy to be filled and he has had some experience of spreadsheets and financial systems in general.
His hobbies are gardening, walking the retriever and restoring an old land rover. Whilst his wife likes to make cakes, John as a diabetic, has limited opportunities to sample them.
Lorraine Woolley MBE
Lorraine worked for many years in the Entertainments Industry in Sales & Marketing working for various companies including the BBC.
She also volunteered as a Special Constable in the Metropolitan Police for 42 years after retiring as Chief Officer and being awarded the MBE by the Queen.
Lorraine continues to Volunteer in the Metropolitan Police helping the Special Constabulary.
She has suffered with TN for over 35 years and her knowledge and experience has helped her run the South East Essex Support Group.
Her hobbies are travelling, collecting Postcards and her dog.
Vanessa feels extremely fortunate in that she herself has never experienced a TN attack, however she has lived through her husband Vince’s journey with TN for many years.
Over the years Vince has had several unnecessary teeth extractions and was prescribed large doses of medication which rendered him feeling like a zombie but he never knew what he was suffering from. Eventually a private appointment with a Maxillofacial surgeon finally diagnosed TN. Vince then had 4 x Glycerol injections with varying degrees of pain relief. Currently his TN is now managed by medication.
Vanessa saw her role which initially started as a supportive carer evolving into the need to become as well informed about TN as she possibly could. She carried out extensive research on the internet and attended all of Vince’s appointments with him. During this time, she came across the TNA UK website and they both attended one of the annual conferences. Vince was so blown away to meet other TN sufferers for the very first time, and who knew exactly what he was going through – this was truly a lightbulb moment for both of them.
Vanessa joined the team of volunteers manning the Telephone Helpline and has now become a trustee.
Vanessa has worked in retail all of her life within a large retail organisation but is now retired and kept very busy with their grandchildren. They both escape whenever they can to their caravan in Dorset.
Helen worked as a primary school teacher and special educational needs coordinator for 31 years before taking early retirement in July 2019. She has had TN since 2008 and found TNA UK when searching for information and support online. As there were no Local Support Groups in Cheshire, Helen started a group in 2012 and continues to arrange meetings. She became a trustee in 2020.
Helen managed her TN with medication for several years but when the increasing doses reached maximum levels and the side effects became too much, she was accepted for radiosurgery. The first treatment in 2013 had limited impact but a second treatment in 2016 has provided good relief with acceptable side effects.
Helen continues to take strategies to try and prevent flare ups, including avoiding cold and windy weather. When the weather is fair, Helen enjoys walking, allotment gardening and travel, both domestic and international.
Deborah worked as an Engineer for 26 years in the Aerospace and Submarine Sonar fields, both in the East Midland and North West regions. She spent the last few years in Engineering as an Engineering Manager.
Deborah suffered with Trigeminal Neuralgia from her early thirties and had a successful MVD in 2017, having suffered for eleven years. Following her MVD she decided to leave her Engineering management role in order to manage the stress in her life better. Deborah turned to cake decorating as a hobby several years ago and upon leaving her Engineering role she decided to set up her own cake business. Deborah now makes cakes for all occasions, especially weddings, is a cake instructor and has won awards for her work.
Deborah started voluntary work with TNA UK in 2017 in order to give something back to the charity, as they were a great source of help prior to her MVD. Her involvement in the Association helps her deal with the mental suffering she went through during the later years of her TN. Deborah, having been told medically that she is still a TN sufferer, is committed to trying to help others with TN and raise awareness.
Deborah lives with her husband and her cat and since her MVD she enjoys taking Motorbike holidays, walking, reading, particularly fantasy adventure, socialising with her friends and cake decorating.
Tony became involved with TNA UK following his somewhat distraught call to the helpline when, after a fifth visit to a dentist following classic symptoms of trigeminal neuralgia, he was finally diagnosed with TN.
Tony currently takes medication to manage hisTN as unfortunately he is not able to benefit from any surgical or other procedure due to undergoing brain surgery earlier in his life.
He believes that maintaining a positive mental attitude helps him to conquer his pain and fears.
Tony has spent most of his working life involved within the property sector and in addition has provided voluntary advisory support to the Citizens Advice Bureau and other charities.
He is now proud to contribute to the TNA telephone helpline service in order to help fellow sufferers to manage their distress and by responding to their concerns.