Coffee, Cakes, and Quiche, for the King’s Coronation

Turning Your King’s Coronation Celebrations into a Fundraising Opportunity

Are you excited about celebrating King’s Coronation with your friends, family, and neighbours? How about adding a charitable twist to your festivities by turning them into an opportunity to raise awareness and funds?

1. Introducing the Concept

Before delving into the specific ideas, it’s essential to introduce the concept of fundraising and why it’s crucial. Explaining how charitable donations and contributions can help make a difference in people’s lives can encourage your guests to get involved and contribute to the cause.

2. Choosing a Cause

Selecting a cause that aligns with your values and resonates with your guests is crucial.  Supports TNA  health, support and research.

3. Donations Instead of Gifts

Instead of bringing gifts to the celebration, guests can donate to TNA UK. Encouraging your guests to contribute to the cause instead of bringing gifts can make a significant impact on the success of the fundraiser.

4. Cake and Bake Sale

What’s a celebration without cake and pastries? Why not turn your love for cakes and bakes into an opportunity to raise funds?  You can set up a cake and bake sale booth at the celebration and invite your guests to indulge in some sweet treats.

5. Charity Auction at the King’s Coronation

A charity auction can add a touch of excitement and thrill to the celebration while also raising funds for charity. Guests can bid on various items, such as artwork, jewellery, or collectables, and the proceeds can go to the TNA-UK.

6. Raffle

A raffle can be an excellent way to raise funds for charity while also providing guests with a chance to win exciting prizes. You can sell raffle tickets to guests, and the winner can take home a coveted prize while also contributing to the cause.

7. Games and Activities

Adding games and activities to the celebration can make it more engaging and interactive while also raising funds for TNA. You can set up a carnival-style game booth or host a charity sports tournament where participants can donate to the cause to participate.

8. Social Media Campaign

Leveraging the power of social media can help raise awareness about the cause and encourage more people to contribute to the fundraiser. You can create a social media campaign and share posts, stories, and updates about the fundraiser,

9. Donation Matching

Donation matching can help double the impact of the fundraiser. You can reach out to corporate sponsors or high-net-worth individuals and request them to match the donations made by your guests.

10. Volunteer Opportunities

Providing your guests with opportunities to volunteer for TNA UK. This can help deepen their engagement and commitment to the cause. You can share information about volunteering opportunities and encourage your guests to get involved.

11. Thank You Notes

Thanking your guests for their contributions and support can help show your appreciation and also encourage them to participate in future fundraising events. Sending personalised thank you notes or messages to each guest This can help make them feel valued and connected to the cause.

12. Tracking Progress

Keeping track of the funds raised and the impact they are making can help motivate your guests and encourage them to contribute more. Sharing updates and progress reports on the fundraiser and the cause can help demonstrate the impact of their contributions

TNA London Marathon Runner

Supporting TN and Facial Pain Sufferers TNA London Marathon Runner.

A Call to Donate to TNA London Marathon Runner  Honor of Gerwyn Tumelty’s London Marathon Run.

Trigeminal Neuralgia (TN), also known as the “suicide disease,” is a debilitating condition characterized by severe facial pain that can be triggered by even the slightest touch or movement. It affects the trigeminal nerve. Which is responsible for transmitting sensory information from the face to the brain. TN can be excruciatingly painful. Often described as sharp, stabbing, or electric shock-like sensations that can last for seconds to minutes and can have a profound impact on a person’s quality of life.

Gerwyn Tumelty, a brave individual who suffered from TN from 2017 to 2019, has remarkably recovered after undergoing microvascular decompression surgery MVD  in 2019.

Despite his challenges,

Gerwyn is now running the London Marathon, one of the most gruelling races in the world. This incredible feat deserves recognition and support from the wider public.  Not only for Gerwyn’s personal achievement but also to raise awareness and funds for TN and facial pain sufferers.

The London Marathon is no ordinary race. It demands physical endurance, mental strength, and unwavering determination. For someone who has experienced the excruciating pain of TN.

Triggers

The wind in the air, a simple touch, or a slight movement can trigger unbearable agony. Many TN and facial pain sufferers cannot step outside, let alone participate in a marathon. Gerwyn’s dedication to overcoming his pain and completing this challenging race is truly inspiring.

TNA London Marathon Runner also needs to highlight the importance of supporting organizations like TNA UK.

TNA UK is a charity that provides invaluable support to those affected by TN and facial pain, offering information, resources, and advocacy for patients, as well as funding research and raising awareness about this debilitating condition.

Donations to TNA UK go directly towards supporting individuals like Gerwyn and other TN sufferers, coping with the physical and emotional toll of TN, and raising awareness about this often misunderstood condition.

https://www.justgiving.com/campaign/tnalondonmarathon

Supporting TNA UK

Donating in honour of Gerwyn’s London Marathon run is an opportunity to make a real difference in the lives of TN and facial pain sufferers. Your donation can provide hope and support to those struggling with this chronic pain condition,. Helping them find relief. Connect with others who understand their experiences, and raise awareness about TN in the wider public. Every contribution, no matter how big or small, can have a significant impact and make a meaningful difference.

If you are moved by Gerwyn’s story

and want to support TN and facial pain sufferers. I encourage you to donate to TNA UK. Your donation can help provide vital support and resources.  To those affected by TN and contribute to ongoing research efforts to find better treatments and ultimately a cure for this debilitating condition.

Your generosity can make a real difference in the lives of individuals who have faced immense challenges but continue to persevere.

Let us come together as a community and support Gerwyn’s London Marathon run, and the broader cause of TN and facial pain awareness and support.

Your donation

Cn bring hope and relief to those who are suffering and contribute to a brighter future for TN sufferers.

Please consider donating to TNA UK today and join us in honouring Gerwyn’s incredible journey and supporting those who are affected by this devastating condition.

Together, we can make a meaningful impact and improve the lives of TN and facial pain sufferers.

Cheer him on:

If you’re in London on marathon day, consider joining the crowds along the route and cheering Gerwyn and other runners on. Your enthusiastic support can boost their morale and help them stay motivated throughout the race. Even if you’re not in London, you can send messages of encouragement through social media or other means to show your support and motivate Gerwyn to keep pushing forward.

Supporting a marathon runner

Like Gerwyn Tumelty goes beyond just donating money. Cheering him on, donating to his fundraising page, sharing his story, offering practical help, and providing emotional support are all valuable ways to show your encouragement and help him reach his goal. By supporting Gerwyn’s London Marathon run and raising awareness for TN and facial pain. You can contribute to a larger cause by helping those who are suffering from this debilitating condition.

Let’s come together to support any runners and make a meaningful impact in the lives of TN and facial pain sufferers

Practical things you can do

• Make a donation: Every donation, no matter how small, can make a significant impact. You can donate directly to TNA’s fundraising campaign for the campaigns. Contribute to other fundraising events organized by the TNA runner. Your donation will go towards supporting TNA’s efforts in research, helpline support, and regional meetings.
• Share the fundraising campaign: Spread the word about the TNA runner’s fundraising campaign by sharing it on social media, and through email. or by talking to friends and family. By raising awareness about Trigeminal Neuralgia and Facial Pain and the TNA runner’s efforts, You can inspire others to contribute and support the cause.
• Cheer for the runner: Show your support and encouragement to the TNA runner by cheering them on during the London Marathon. You can send them messages of encouragement.  Follow their progress on social media.   Even go to the marathon route to cheer them on in person. Your support and motivation can go a long way in keeping the runner motivated and energized during the race.

Every Little helps

Remember, every contribution, big or small, makes a difference in supporting TNA’s cause and helping those suffering from Trigeminal Neuralgia and Facial Pain.

TNA London Marathon Runner’s participation in the London Marathon is significant. It raises awareness about these conditions and the challenges faced by individuals who suffer from them. Running a marathon requires immense physical and mental endurance.

As does Fergus Morgan running the Edinburgh Marathon!

The TNA runner’s commitment to completing the race despite the challenges is commendable. It also highlights the urgency to support fundraising efforts for TNA. As the association relies on donations to continue providing essential services to its members.

As the world continues to grapple with the COVID-19 pandemic, many people are experiencing a variety of symptoms, including fever, cough, and difficulty breathing. However, for those who suffer from trigeminal neuralgia, the pain caused by the virus can be even more unbearable. In this article, we will discuss the impact of COVID-19 on trigeminal neuralgia and offer some tips on how to alleviate the pain.

Introduction

The COVID-19 pandemic has affected millions of people worldwide, and those who suffer from trigeminal neuralgia are not immune to its impact. In this article, we will discuss the unique challenges faced by those with trigeminal neuralgia during the pandemic and offer some solutions to ease the pain.

What is Trigeminal Neuralgia?

Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which is responsible for sending sensory information from the face to the brain. It causes sudden, intense facial pain that can be triggered by simple activities like brushing teeth or eating. The pain can be debilitating, and it can significantly impact a person’s quality of life.

Covid Aneeta Prem persceptive

Three years to this day after the world was locked down due to COVID-19, the virus has entered the Prem household. We have been careful to the point of paranoia, but today, a very faint line appeared on my COVID-19 test.

Every bone in my body is hurting, I’m shaking, and I have a temperature of 101.6. Having COVID-19 or suspected COVID-19 is bad enough, but every time I blow my nose or sneeze or cough, it seems to hurt and general neuralgia even more.

I’m on my knees in agony, screaming with pain. “Can anything be done to ease the pain?” I asked my GP in vain, and I’m told I should take paracetamol and ibuprofen. “There’s nothing else I can do for you,” they say. While these medications may be helping with the temperature and shakes, they certainly aren’t helping with the trigeminal neuralgia and facial pain I’m going through.

As someone who lives with trigeminal neuralgia and is also the CEO of Trigeminal Neuralgia Association UK, Aneeta Prem understands the impact that COVID-19 can have on those with the condition.

 

COVID-19 and Trigeminal Neuralgia: What You Need to Know

For people with trigeminal neuralgia, COVID-19 can be particularly challenging. The virus can cause inflammation and damage to nerves, which can exacerbate the symptoms of trigeminal neuralgia. Additionally, the pain and discomfort associated with COVID-19 can make it more difficult to manage trigeminal neuralgia symptoms.

As Aneeta Prem explains, “For those living with chronic pain conditions like trigeminal neuralgia, the COVID-19 pandemic has been particularly difficult. The pain and discomfort associated with COVID-19 can exacerbate existing symptoms and make it more challenging to manage the condition. It’s important for those with trigeminal neuralgia to take extra precautions to avoid getting sick.”

COVID-19 and Trigeminal Neuralgia

COVID-19 is a highly infectious disease that affects the respiratory system. However, many people with COVID-19 also experience neurological symptoms, including headaches, dizziness, and confusion. For those with trigeminal neuralgia, the virus can exacerbate the pain and make it even more challenging to manage.

How COVID-19 Affects Trigeminal Neuralgia

When a person contracts COVID-19, the virus attacks the body’s immune system, causing inflammation and swelling. Inflammation in the facial nerves can lead to an increase in trigeminal neuralgia symptoms, including facial pain, tingling, and numbness. Additionally, the coughing and sneezing associated with COVID-19 can aggravate the condition, leading to increased pain and discomfort.

Managing Trigeminal Neuralgia During COVID-19

Managing trigeminal neuralgia during the COVID-19 pandemic can be challenging, but there are some things that people can do to alleviate the pain. Here are some tips:

1. Take Your Medications as Prescribed

If you are taking medications for trigeminal neuralgia, make sure you continue to take them as prescribed. Do not stop taking your medications unless instructed to do so by your doctor.

2. Practice Good Hygiene

Practicing good hygiene can help prevent the spread of COVID-19 and also reduce the risk of aggravating trigeminal neuralgia symptoms. Wash your hands frequently, wear a mask when in public, and avoid touching your face.

3. Stay Active

Staying active can help reduce stress and improve overall health, which can help alleviate trigeminal neuralgia symptoms. Consider low-impact exercises like yoga or walking.

4. Apply Heat or Cold Therapy

Applying heat or cold therapy to the affected area can help alleviate pain and reduce inflammation. Try using a heating pad or a cold pack to see which works best for you.

5. Seek Medical Attention

If your trigeminal neuralgia symptoms are severe or you are experiencing new symptoms, seek medical attention immediately. Your doctor may be able to provide additional treatments to help manage your symptoms.

Conclusion

The COVID-19 pandemic has presented unique challenges for those with trigeminal neuralgia. However, by taking the necessary precautions and following the tips above, you can help manage your symptoms and reduce the impact of the virus on your condition. Remember to stay vigilant and seek medical attention if needed.

Rare Disease Day 2023 28th of February

Introduction

February 28th marks Rare Disease Day, where more than 600 events worldwide are organized to raise awareness about rare diseases, including Trigeminal Neuralgia. Trigeminal Neuralgia is a rare and excruciatingly painful disease that affects approximately 1 in every 15,000 people.

marks living with a Rare Disease and Trigeminal Neuralgia:

The Painful Reality of Living with a Rare Disease

Rare Disease Day 2023 for those with Trigeminal Neuralgia, is a rare neurological disorder.  That causes sudden and severe facial pain. This excruciatingly painful condition affects approximately 1 in every 15,000 people worldwide, and yet many people have never even heard of it.

We at TNA Uk are here to shed light on this debilitating disease and the challenges that come with living with a rare disease.

From the impact on daily life to the challenges in diagnosis and treatment, Trigeminal Neuralgia presents a painful reality for those who live with it.

The Painful Reality of Living with Trigeminal Neuralgia

Trigeminal Neuralgia causes sudden and intense facial pain, which is often described as an electric shock or stabbing sensation. These attacks can last from a few seconds to several minutes and can occur multiple times a day. Unfortunately, even everyday activities such as chewing, talking, or even a slight breeze on the face can trigger an attack.

Living with Trigeminal Neuralgia can be incredibly difficult. The pain can be so severe that patients may avoid basic self-care routines such as brushing their teeth or shaving. The unpredictable nature of the disease can also lead to depression, anxiety, and social isolation. Patients may struggle to maintain relationships or participate in social activities, which can lead to feelings of loneliness and hopelessness.

Challenges in Diagnosis and Treatment

Diagnosing Trigeminal Neuralgia can be challenging, as there is no specific test for the disease. Patients may undergo a series of tests to rule out other conditions, and a definitive diagnosis may take months or even years to obtain. This can be incredibly frustrating for patients who are experiencing intense pain and are seeking answers and relief.

Treatment options for Trigeminal Neuralgia include medication, surgery, or a combination of both. Medications such as anticonvulsants or muscle relaxants can help reduce the frequency and intensity of attacks, but they may also cause side effects such as dizziness, drowsiness, and nausea. Surgery, such as Microvascular Decompression or Gamma Knife Radiosurgery, can provide long-term relief but carries its own risks.

The Importance of Fundraising for Trigeminal Neuralgia Association UK

Trigeminal Neuralgia Association UK is a charity that provides support and information to those affected by Trigeminal Neuralgia. They also work to raise awareness of the disease and fund research into finding better treatments and, ultimately, a cure.

Fundraising for Trigeminal Neuralgia Association UK

is incredibly important to support their vital work. Donations can help to fund research into better treatments and support services for patients and their families. Fundraising events such as sponsored walks or runs, charity auctions, or online campaigns can help to raise awareness of the disease and the challenges faced by those who live with it.

Rare Disease Day 2023 Trigeminal Neuralgia is a rare and debilitating disease that can significantly impact a person’s quality of life. From the challenges in diagnosis and treatment to the impact on daily life and emotional well-being, living with Trigeminal Neuralgia presents a painful reality for those who are affected. It is vital that we continue to raise awareness of the disease and support organizations such as Trigeminal Neuralgia Association UK in their mission to improve the lives of those affected by this condition.

Trigeminal Neuralgia Conference

Empowering TN Sufferers with Practical Solutions for Pain Management

Trigeminal Neuralgia Conference in January 2023 was a life-changing event for Trigeminal Neuralgia (TN) and facial pain sufferers. This conference brought together renowned experts in the field of TN. Providing invaluable insights into the latest developments in treatment and management. If you suffer from TN, the information presented at this conference is not to be missed.

In this article, we’ll delve deeper into the conference and highlight the practical solutions for TN pain management. The empowering experience for attendees, and the commitment of TNA to expand its focus to include facial pain.

Expert Speakers Provide Practical Solutions for TN Pain Management

The conference was expertly chaired by Aneeta Prem MBE and the joint chairs of the medical advisory board, Dr Lambru and Mr Barazi. The event was well-organized, and delegates were treated to an inspiring and informative day of presentations. The quality of the speakers was impressive, and they provided practical solutions for TN pain management.

“Giorgio Lambru Is simply the best thank you for expanding TNA-UK to include facial pain!’

“Mr Sinan Barazi Consultant Neurosurgeon a fantastic compassionate surgeon and a great speaker “

Dr Lambru and Mr. Barazi, renowned experts in the field of TN, offered invaluable insights into managing TN pain. Linda Fisher, a Chartered Psychologist, provided practical tips on how to cope with the emotional impact of TN, while Mark Weatherall, a Consultant Neurologist, gave an informative presentation on the neurological treatment of TN.

The conference provided practical solutions for TN pain management, leaving attendees feeling better equipped to manage their TN pain. As one delegate put it, “The information presented at the TNA conference has changed my life. I feel better equipped to manage my TN pain, and I’m grateful for the support I received from other attendees.”

An Empowering Experience for TN Sufferers

The TNA conference was an empowering experience for TN sufferers. Attendees learned from leading experts in the field.  Delegates felt inspired to take control of their pain. As another delegate said, “The TNA conference was an empowering experience. The knowledge and expertise displayed by the speakers were impressive. I left feeling more informed and better equipped to manage my TN pain.”

TNA Expands Its Focus to Include Facial Pain

In addition to the wonderful insights provided by the TNA conference attendees were thrilled to hear that the Trigeminal Neuralgia Association (TNA) has expanded its focus to include facial pain as part of its work. This decision was met with great enthusiasm, as it recognizes the wide range of pain experiences that individuals with facial pain endure.

Furthermore, four individuals who suffer from TN and facial pain were delighted that research is at the heart of what TNA wants to do. They recognized that research is essential for discovering new treatments and ultimately finding a cure for TN and facial pain. This focus on research shows that TNA is dedicated to providing the most up-to-date and effective treatment options for its members.

TNA Continues to Support Members

Attendees were also pleased to learn that TNA will continue to support its members with its helpline and regional meetings. The TNA helpline is a vital resource for those who need support and advice.

The regional meetings provide an opportunity for members to meet others who are going through similar experiences, share stories, and exchange practical tips on how to manage their pain.

Conclusion

In summary, the TNA conference was a great success, and attendees left feeling empowered, informed, and supported. The decision to include facial pain as part of TNA’s work, the focus on research the continued support through the helpline and regional meetings show that TNA is committed to improving the lives of individuals with TN and facial pain.

feedback

Life-Changing Experience

JH “found the TNA conference to be a life-changing experience. They were impressed by the organization and the quality of the speakers. Who provided insightful information on managing TN pain. Specifically mentioned Aneeta Prem, CEO, as a standout speaker who inspired them with her knowledge and passion for helping those with TN.

Invaluable Insights from Dr Lambru and Mr Barazi

DS was grateful for the opportunity to learn from experts in the field such as Dr Lambru and Mr Barazi. They are both ‘Simply the Best”

They found their presentations to be well-structured and informative, providing them with invaluable insights into managing their TN pain.

Inspiring Presentations by David Martin, CEO of MS Trust

DS was inspired by David Martin’s presentation on the role of advocacy in improving the lives of those with TN. As CEO of MS Trust and Chair of the Neurological Alliance, Martin offered a unique perspective on the challenges faced by TN sufferers and how they can be overcome through advocacy and support.

Linda Fisher’s Insights into Psychosocial Support

SP found Linda Fisher’s presentation on psychosocial support for TN sufferers to be particularly insightful. As a Chartered Psychologist, Fisher offered practical tips on how to cope with the emotional impact of TN, as well as the importance of seeking support from friends, family, and professionals.

Uke Cascarini’s Expertise in Maxillo-Facial Surgery.

TL was impressed by the expertise of Uke Cascarini, a Consultant Maxillo-Facial Surgeon. Cascarini provided detailed information on surgical options for TN, including the latest advancements in the field. The delegate found the presentation to be informative and helpful in understanding their treatment options.

Mark Weatherall’s Insights into Neurological Treatment

LZ stated appreciated Mark Weatherall’s insights into the neurological treatment of TN. As a Consultant Neurologist, Weatherall provided a comprehensive overview of the various treatments available, including both surgical and non-surgical options. LZ found the presentation to be both educational and inspiring.

Trigeminal Neuralgia Conference

Feedback

“Compassionate Support from TNA Speakers” “I was touched by the compassionate support they received from the TNA speakers. They appreciated the empathy and understanding displayed by the experts in the field and felt that their struggles with TN were being taken seriously.”

“Insightful Discussions on Coping Strategies”: “appreciated the insightful discussions on coping strategies for TN sufferers. They found the presentations on psychosocial support and mindfulness to be particularly helpful in managing their pain and improving their quality of life.”

“Inspiring Stories from Other TN Sufferers” ‘I was inspired by the stories shared by other TN sufferers at the TNA conference. They appreciated the opportunity to connect with others who understand the challenges they face, and felt a sense of community and support as a result”.

“Outstanding Organization and Planning”: was impressed by the outstanding organization and planning of the TNA conference. They appreciated the seamless flow of the event and the attention to detail and felt that their experience was greatly enhanced as a result.”

One Million Steps For TNA

As we approach the New Year my thoughts turn to New Year’s Resolutions, and choosing some that will be achievable and sustainable for me! We are launching the One Million Steps for TNA so that we can all focus on trying to become more active and fitter throughout the next year, and I hope that you might like to join me in that challenge.

I know we can’t all venture out, so racking up steps at home or in a shopping centre counts towards your goal. You will need a smartphone with a step-counting app or a pedometer. I am going to start with a target of 1,000 steps per day and try to work gradually towards 10,000 per day. I really do hope that friends and family might sponsor this activity and perhaps even join in too!

Once you have your sponsors and have completed your walk please donate to our gift aid Here and show your commitment to those with Trigeminal Neuralgia.

Christmas Donations

Christmas donations are the most important time for any charity, this is when family comes together and helps make other people’s lives better. If you are able, the Trigeminal Neuralgia Association would greatly appreciate any donation, large or small for those suffering from what is often called the suicide disease. Donating at this time of year means that we can plan, gather resources for essential services, and make sure that the phone lines are always there for people to call in their time of need.

Remember your loved one this Christmas

Regional Support Groups

Your donations help support our helpline as we have a freephone number, and regional support groups, these are designed to alleviate isolation and loneliness and help people meet fellow sufferers, knowing you are not completely alone, these also give you help and support in your local area. TNA needs to grow the regional support groups so that we can have a support group in every support group in the united kingdom.

By donating to TNA you can provide a complimentary membership to a Trigeminal Neuralgia sufferer that will give them access to; our national webinars on zoom, where we have the leading experts on trigeminal neuralgia and facial pain, where we discuss the latest research, procedures and the latest help and support available to our members only, with the opportunity to ask questions to the leading neurologists, neurosurgeons and psychologists.

Donating At Christmas

“This year I am not sending Christmas cards to friends and family, as I am not sure they would even arrive, the £50 I would normally spend on Christmas cards, I am donating to TNA, I have sent an email to all of my friends explaining my actions and they are all incredibly positive” due to the rail strike, we have made it easier for you to donate;

ways to renew your Membership and/or make a donation. With our new website being live it’s a good time to check the housekeeping log-in and update any details and check your renewal date.

Renew Online

One of the quickest ways to pay Login with user name and password. If you have forgotten your username or password, click the reset password link or contact the office

Click on the membership area and renew your membership tick the membership required

You can check your membership status by logging in and going to your membership dashboard here you will see the date of expiry. You can also see any orders you have made and update your address and phone number.

Donating Online via the donate button at the top right of your screen. or Click Here.

Renew or Donate Over the Phone

Please contact the office on

Renew or Donate by Post

Please make cheques payable to Trigeminal neuralgia Association UK

And send to

TN Association UK

PO Box 10973

Nottingham

NG16 9GN

Supporting Someone with Trigeminal Neuralgia (TN) 

Trigeminal neuralgia can have a profound effect on not only the individual suffering but also on close friends and family. Trigeminal Neuralgia is unpredictable and therefore can be difficult to cope with, both for the patient and the carer. Not knowing when the next attack will strike can cause fear and depression. However, some mechanisms can be used in supporting Trigeminal Neuralgia pain. And therefore improve the life of the patient and carer.

To the outside world, it is difficult for people to comprehend exactly what Trigeminal Neuralgia is. Trigeminal Neuralgia pain can differ, during an attack, it can be almost debilitating. As a carer, you need to be the key in supporting their Trigeminal Neuralgia and explain to others what is happening if an attack should occur outside of the home.

Signs of an attack

You, as the carer, will be aware of some of the indications of a Trigeminal Neuralgia attack:

• Sudden immobility or silence
• A physical jerk
• Involuntary facial twitches
• A scream or shout of pain

Whilst Trigeminal Neuralgia can occur without provocation, usually, an attack is brought on by a trigger. For example, a trigger could be a cold wind blowing against the face, brushing one’s teeth or eating a meal. The sufferer will tend to avoid the triggers, not wishing to bring on an attack. Therefore, it is important to think of ways around these issues. As it is paramount that the sufferer can continue to lead as normal a life as possible.

Research into supporting Trigeminal Neuralgia, and building your knowledge

• Trigeminal Neuralgia is a scarcely known condition so the carer must do research. Your research should keep you knowledgeable and well-informed about their condition.
• This can include the latest developments in medication, surgical interventions and any additional help that may available.
• The fact that you have found the TNA website is a great start in your research. Please look at all of the information under all of the available headings.
• If the sufferer is not already a member of the association, may we urge you to encourage them to join us. There are many benefits available not least being able to access the members’ area. Under which are zoom meetings with world-known Neurologists and Neurosurgeons. It is also important to keep members up to date as the website is constantly being updated with new information.
• The telephone and email helplines are also invaluable sources of information and reassurance
• The number of regional local support groups is growing and information and locations of these groups are included on the website. These support groups are a great way for meeting other sufferers. Hearing their stories and giving and receiving tips, advice and hope. They also lessen the feeling of isolation or even depression.

Medications and Treatment

• The sufferer may have visited several practitioners over the years and tried various medications. Some of which may have helped and some not, though these are different for everyone some are promising.
• Several types of medication can be prescribed and very often different ones need to be taken before the most suitable is found. however, in some cases, people can react badly to anti-convulsants and this has to be carefully monitored. Some people may have tried dozens of different medications and treatments. Though some have suffered severe side effects they deal with these for the sake of getting rid of the pain. In these cases, they will need additional care and support from you.
• Be aware that high doses of medication may make sufferers mentally slow, have a muddled thought process and be forgetful and confused. They also may be exhausted, depressed and sleep more.
• The leaflets in the information packs that are sent out when a person joins the association are invaluable. The one titled ‘Treating TN with Medication’ is extremely useful for understanding the various medications available. This explains not only the many different types of medication but how to take them and the maximum dose.
• The leaflet entitled ‘Surgical Procedures for Treating TN’ is also very useful to understand what surgical interventions may be available if needed.

Living A Normal Life

• Encourage your loved one or friend to live as normal a life as possible within the bounds of the condition.
• There is a real danger that they will want to stop socialising and going out of their home. This means there is a large chance they may become isolated by their fear of having an attack
• Devise a plan of action as to what you should do should an attack occurs when you are out of the house. For example at a dinner party, a meeting, playing sport etc. Inform people who you will be with what may happen if an attack occurs and how it will be dealt with. Think in advance of a quiet place for the person to take themselves off to.
• Holidays can cause great fear for a sufferer especially if they have to take public transport, for example flying. Encourage the booking of holidays as they are so important to both the sufferer and the carer. Holidays in the UK might be preferable where you can use your own transport. Though as long as you have a plan of action, do not exclude holidays abroad where you may have to fly. Think of booking airline seats near a toilet or at the front/back of the plane to enable an escape to a quiet place.

Other ways of supporting Trigeminal Neuralgia

• If you are looking after or just visiting someone who is affected by TN, remember that your care and attention is invaluable. It is of great comfort for patients to be with a loved one who they know has done everything possible to understand their condition and who is patient and sympathetic.
• The pain may strike when talking, so be aware that conversation may be halted or may cease altogether. Therefore be guided by them and just remember that your presence and kind words do much to alleviate their distress.
• If an attack strikes during mealtimes, eating may be slow or stop completely. Therefore it may be helpful to have some recipe adaptations for soft food during periods of attacks.
• If you are in company when this happens, you may be aware that the sufferer has ‘seized up’. It would be helpful if you could take over the conversation until they have recovered.
• Because anti-epileptic drugs used to treat TN are designed to suppress electrical impulses firing in the brain, they also have the same effect on other brain functions such as memory and thought processes. Sufferers may have trouble with word recall, repeat themselves, forget important dates or arrangements and appear confused or muddled. To some, this is a great source of embarrassment and it can make them extremely self-conscious. Try not to take over the organisation of their lives, but if you can ‘catch them when they fall’ and not get irritated by their forgetfulness, it would be of great help.
• There may be periods of complete or partial remission from TN for weeks, months or possibly years, but there is a likelihood that it will return. This can be quite devastating for the sufferer if this happens, so be prepared for this setback.

Attending Medical appointments

• If at all possible, it is a good idea to accompany your Trigeminal Neuralgia sufferer to all medical appointments. This is extremely important if they are in pain as they may be unable to communicate coherently. If they are taking large doses of medication this may well affect their memory and thought process during discussions with the medic.
• Before appointments, encourage the use of keeping a pain diary for at least a month noting when the pain occurs, how long it lasts and what triggers it, etc. It may be useful for the carer to keep an eye on this to ensure correct record-keeping. This helps enormously to give accurate information to the health professional.
• As well as the above, having written notes on the patient’s TN medical history including key dates, medications taken and any surgical interventions is all invaluable information to have with you.
• In an emergency, and if the pain is unbearable it is sometimes possible to get immediate (but temporary) relief from a ‘nerve block’. This can be administered by a dentist or a dental anaesthetist at your local A&E department.

Look After Yourself

• As a carer, you will need to be patient, protective and supportive, have a positive attitude and show compassion. This all creates a demanding role and therefore you must look after yourself.
• As you try to balance work, family and caregiving, your own physical and emotional health can be affected over time. Remember that your health is important not only for your own quality of life but also for the person you care for. It’s important that you aside some time for yourself. This is not a luxury!
• You must keep up the friendship and company of others and make sure your family and friends are aware of the situation and ensure they are supportive to help you and lighten your load.

TNA National Conference and AGM

14th of January 2023 Is the new date for the TNA national conference and AGM, It will take place at Copthorne Tara High Street Kensington

TNA National Conference Details

The registration will be from 9 am and refreshments will be available. This will then go straight into the TNA National Conference;

Trigeminal Neuralgia Conference 

14^th January 2023, High Street Kensington London

I am immensely looking forward to our annual TNA conference on 14 January 2023. We have managed to secure the leading experts in their fields who have confirmed their attendance at the conference.

I am looking forward to meeting those of you who can attend on the day.

Timetable for Conference

Introduction Aneeta Prem, CEO

Presentation on the new Chairs of the Medical Advisory Board presenting their visions for TNA,  Giorgio Lambru and Mr Sinan Barazi.

Dental causes of facial pain Francis O’Neill, Consultant in Oral Surgery

Trigeminal Neuralgia and Multiple Sclerosis David Martin, CEO of MS Trust and Chair of the Neurological Alliance

Trigeminal neuralgia diagnosis and management Giorgio Lambru, Consultant Neurologist

Surgical management of trigeminal neuralgia Sinan Barazi, Consultant Neurosurgeon

Psychological treatment of facial pain Linda Fisher, Chartered Psychologist

Patient panel

Temporo-mandibular joint disorders and facial pain Luke Cascarini, Consultant Maxillo-Facial surgeon

Cannabinoids in facial pain: what is their role? Mark Weatherall, Consultant Neurologist

Presentations of trophies for fundraisers

MAB panel discussion and closure By MAB Chairs and CEO.

For many people attending the conference, this will be the first time they are meeting someone with Trigeminal Neuralgia. Those who attend the TNA National Conference last year was the start of making life-long friends;

“I was surrounded by people who just understood what I was going through. The day was so informative and I learned so much.”

The Cost Of Living Crisis

As the cold and dark days of winter draw in, UK residents are concerned more than ever about the cost of living crisis, not only the increased cost of Housing and food but heating too as those of us that suffer from Trigeminal Neuralgia, deal with cold far worse than anyone else because low temperatures are a definite trigger that can spark a TN attack.

Cost of living, CEO of TNA

The CEO of `the TNA Aneeta Prem has written to all the major energy companies in the UK asking for help with the cost of bills for those suffering from TN.

‘Many Trigeminal Neuralgia suffers are fearful of getting overwhelmed by soaring costs. especially in heating their homes, many people cannot work due to the  debilitating pain are at home, and suffering’

Trigeminal Neuralgia Member Report

A member of TN reported that:

‘I am unable to put my heating on as the cost has gone up 300% in the last year, this means that I am cold and it really does affect the level of pain I suffer. Even in my house, walking down the hall is so chilly that my Trigeminal Neuralgia pain keeps flaring up. I have also had to reduce the amount of food I eat as this is too expensive, I am living on Cup a of Soup and noodles”