Robert Hart-Noddings

Pets at Home Hartlepool 14,000 press ups in November for Trigeminal Neuralgia Association UK

Fundraising for Trigeminal Neuralgia Association UK
£85
raised of £300 target
Press up challenge, 1 November 2024
Trigeminal Neuralgia Association UK

Verified by JustGiving

RCN 1155001

Story

Hello and thank you to anyone reading this. This will be quite long winded so I do apologise but I wanted to share my story in a bit of detail. When I was 24 I was diagnosed with something called Trigeminal Neuralgia. I had never heard of it and never realised how much something could instantly change my life and in this case not for the better. The pain is often called the worse in medicine, it's basically the full side of my face felt like it was on fire and being electrocuted at the same time, and earache headache and toothache all at the same time and a pain that was constant, 24/7, all the time. Not even being able to close my eyes to go to sleep some nights, not because of anything other than extreme pain. My worst night was the night I was diagnosed and given the medication Carbamazepine, I had taken 2 of them, 4 ibuprofen, 4 paracetamol, some anadin and even 2 codeine just to try and help me sleep, I still couldn't even close my eyes. It's not something I could've ever imagined and the only way I could try and help relieve the pain at times was using freezing cold water and holding it in the right hand side of my mouth, this even led to me killing 2 teeth and having to have them removed. The medication helped ease it as it got into my system but there was a lot of side effects with it, things I've never really had issues with in the past, fatigue, dizziness, blurriness, acid, and feeling really sluggish and low. Trigeminal Neuralgia is often referred to as 'Suicide disease' not even because of the mental effects but it's about the physical pain that you are in that honestly feels like it will never end. I had been on the medication for almost 4 years but even with this I was still having painful attacks and struggling with my daily life. What I also didn't know until I was diagnosed that this is referred to as the most painful thing in medicine, forever ending the debate on childbirth or a kick in the nuts for me 👌 Then in April last year I had a type of brain surgery called Microvascular Decompression in which they used teflon and some foam and surrounded the compressing artery to stop the pressure on the nerve. This has so far been successful and I have (touch wood) not had any issues since, although it isn't guaranteed to be that way for life I can honestly say if I need this every 5/10 years I will 100% be going through it as many times as I have to so I don't have to deal with that pain again. I can honestly say I wouldn't have got through it without my beautiful wife and amazing daughter when she came along, 1 day standing out to me in particular was when Freya was around 8 months old and I had just been having an awful day, a day filled with pain and I just wanted to sit and cry. She came over to me and gave me the biggest hug she ever had, even rubbing her tiny hands on my back as if to tell it was going to be okay, I had honestly never felt more strength. My friends and family were amazing and I also want to shout about my incredible team, most of which I still work with now but I will forever be indebted to the team that helped me day to day whilst I worked my way through it all. On days where I could barely lift a finger they were all there to support me going above and beyond to be with me and support me through the hard times.

That leads me to what this is all about. For the past 3 years me and my team have taken on the press up challenge in November to raise money for charity and this year is no different. However this year is a touch more personal to me as this year we will be doing it in support of the Trigeminal Neuralgia Association. This year we will be aiming to raise £300 but more than anything I would like to try and help raise awareness to as many people as possible. Through my own experience of living with it, I really can say it changed my life, and at the time it was definitely for the worst, but at the same time I am a pretty positive person! Now I can say that I really do have an entirely different perspective on life, a person that is 100% a glass half full person and always wants to help people see the same, everyone is fighting a battle and I think it's important that we remember that no matter what. Thank you to anyone who donates, anyone who follows our updates as we go, I'll try to post some videos and photos as we go as well and keep updating the total raised, but please please please my biggest ask for all of this is to SHARE this. It takes a lot to get the diagnosis because there simply isn't enough awareness around the condition and even if this helps just 1 person get the diagnosis that they need this will have all been worth it.

From the bottom of my heart though, thank you ❤️

This is a bit of detail about the charity and the amazing things they do.

Trigeminal Neuralgia (TN) is a little-known illness that affects approximately 63,000 people (0.1%) of the UK population. Caused by a blood vessel pressing against the trigeminal nerve in the brain, TN causes excruciating electric shock pains – often triggered by light breezes, touch, shaving or brushing teeth - that radiate across the face. It is the worst pain known in medicine and, with no cure, has unfortunately been dubbed ‘the suicide disease’. Patients are often misdiagnosed with toothache and so have unnecessary dental extractions prior to the correct diagnosis.

Medication is the first line of treatment and, as the condition progresses, the TN patient then considers whether brain surgery (to move the blood vessel away from the nerve) is an option they wish to consider. This is by no means a guaranteed cure though.

Our work, as the UK’s only dedicated charity to trigeminal neuralgia and facial pain, is to:

Raise awareness of the condition and educate healthcare professionals (doctors, dentists and pain specialist nurses for example).

Provide support to our members through our website, phone and email helplines.

Host national webinars with world leading specialists as guest speakers.

Support research and development into understanding and treatment for TN.

Thanks for taking the time to visit my JustGiving page.

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About the charity

Trigeminal Neuralgia Association UK

Verified by JustGiving

RCN 1155001
It aims to provide information and support to members, and to raise awareness of trigeminal neuralgia amongst medical professions and the general public. Above all, it is there to provide hope and encouragement for patients who can feel isolated and depressed as a result of this excrutiatingly painful condition.

Donation summary

Total raised
£85.00
+ £21.25 Gift Aid
Online donations
£85.00
Offline donations
£0.00

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