TRIGEMINAL NEURALGIA - SUICIDE DISEASE
Vicky is my little sister. She is outgoing, lively and the room is NEVER quiet if she is in it....well, thats how it used to be anyway.
Vickys pain came completely out of the blue in October 2019. She sat on the sofa watching TV one evening and suddenly clutched her face in pain and looked in total fear!
Within a Month she was diagnosed with Trigeminal Neuralgia.
Trigeminal neuralgia (TN), also known as suicide disease, is sometimes described as the most excruciating pain known to all humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. It is an intense, stabbing, electric shock-like pain and is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It is usually limited to one side of the face. The pain can be triggered by an action as routine and minor as brushing your teeth, eating or the wind. Attacks progressively worsen. Sometimes it can be helped by medication but for some, surgery is the only option.
Desperate for the completely debilitating pain to end and with the NHS wait to see a neurologist at 24 weeks, she decided to see a neurologist privately. He wanted to do an MRI which meant another 26 week wait through the NHS, so again she and her partner, Tommy managed to raise the funds and had the MRI privately.
With the pain getting increasingly worse and more frequent the neurologist changed and increased her medication. At Christmas she had a horrible few months and had on several occasions been suicidal. She was convincing herself that Tommy was going to leave her and it was probably for the best!
This made Tommy want to show her what she means to him and assure her he wasn't going anywhere- so he proposed!!
The medication slowly started to work and the attacks became less frequent and in February 2020 she returned to work.
Her Mum was then diagnosed with Lymphoma so they arranged the wedding for August that same year as Vicky was fearful of her Mums condition.
Then COVID hit!
To top everything off, in June 2020 Tommy was made redundant due to the pandemic so their finances were massively hit.
Vicky continued to work throughout but agreed with her school that she would need to step down from year 6 teaching, a job that she loved, and took a less stressful position as year 3 class teacher. She did continue to have attacks up until August 2020 and therefore lived a very cautious life. Completely changing the way she did daily tasks such as eating, brushing teeth, not leaving the house without wrapping scarfs around her head and face, keeping doors and windows shut and curtains closed.
About this time she went into remission but due to Covid the wedding had to be postponed. Our Dad then had a series of heart attacks just 2 days before the planned wedding.
Vicky and Tommy had arranged the wedding for the same date the following year.
Although her attacks had stopped she continued to live a cautious life and was taking huge quantities of medication to enable her to work and have some sort of normality, albeit very restricted both due to COVID and through constant fear!
Her life carried on like this through all the COVID restrictions that followed until May 2021, when again, out the blue, in her classroom, in front of her beloved class, her TN came back with a vengeance!
Tommy was studying to become a teacher and managed to find some work but had to cut his hours back to be able to care for Vicky as she was unable to complete daily tasks through pain and fear.
She has now had all confidence knocked out of her and lives with no quality of life having regular attacks. She spends every day trying to sleep as much as possible as the TN thankfully doesn't get her in her sleep. When she is awake she sits in a dark room with little or no noise and entertainment through fear of triggering another attack. She has not been outside for 3 weeks, not eaten (bar smoothies) for 2 weeks. She rarely washes and brushes her teeth because of the fear and she is regularly having suicidal thoughts.
Throughout this she has not been able to see her mum because of COVID and yet again, they had to cancel the wedding. She is constantly worrying about Tommy, her parents health and work and just doesn't want to be awake on good days or alive on bad ones!
Her consultant has told her that there is no other option apart from brain surgery now as the condition has worsened. The NHS waiting list is sitting between 1.5 and 2.5 years. She simply cant wait that long whilst being suicidal.
Private surgery alone is £18,000. There are many scans and appointments that are needed before and after too, all of which add to the cost as well as leaving them with the financial difficulty during recovery whilst work is impossible.
Please help me raise the funds she desperately needs to pull her through this debilitating condition so she can see life is worth living.