While I am open and frank, there are elements of my personal life I prefer to keep private. However, in recent weeks, I have been encouraged to speak publicly about living with Trigeminal Neuralgia. It is also known as suicide disease, because it has been said to be one of the most excruciating pains known.
For most of the past two years, I have been privately dealing with chronic pains in my face, but mainly in my head. This has meant frequent trips to doctors and specialists, numerous medical tests and scans, a cocktail of drugs and painkillers, and coping with the symptoms. But, to quote a song by The Verve, the drugs don’t work!
The road to diagnosis has been long and difficult, but I now know I am living with the chronic condition of Trigeminal Neuralgia. I also now understand how high my pain threshold is.
Speaking Up
I had little intention of sharing this diagnosis with those outside my immediate circle, but I have been encouraged to talk publicly about living with Trigeminal Neuralgia.
It is a little-known and largely invisible condition that is greatly misunderstood. Those living with TN endure extreme pain, almost unbearable at times, with no obvious external signs or symptoms. Personally, the colour my face goes or the pain behind my eyes is clearly visible to those who know me well.
I hope sharing my experience will help demystify TN and give others some hope.
My Trigeminal Neuralgia Experience
Everyone living with Trigeminal Neuralgia will have a unique experience. I can only tell you about mine.
When the headaches and pains in my face started, I put it down to stress, late nights, the hours I was working, and other aspects of my life. I’d pop some painkillers and carry on, or often attempt to block the pain out by putting my AirPods in and listening to music.
I had to. I run several companies, employing many people, and was working on a new concept in cryptocurrency trading, Moni Talks. I couldn’t just take time off to nurse a headache.
As the pain worsened and the pills became less effective, I was encouraged to seek medical advice. This was the start of a long and frustrating journey, which I won’t go into the full details of here.
It’s enough to say that it required many appointments, trips to UK-based specialists, tests and scans, and much head scratching. There was also a lot of trial and error in trying to get a medicine cocktail that would work for me. Some failed to stop the pain; others made me drowsy and unable to function. In some cases they made me collapse due to dizziness.
These days I don’t take any painkillers and instead use music and my own pain threshold to block the pain out where I can.
The pain is difficult to describe. I can understand why others living with Trigeminal Neuralgia are unable to continue their previous lives. I was able to, and this was due, in part, to the high pain threshold I have developed for various reasons over the years. It was also partly down to also being a sufferer of Rheumatoid Arthritis, with pain in my feet especially. It is like walking on broken bones or ball bearings most days.
Talking about having a high pain threshold isn’t arrogance. I appear to have a relatively high threshold for pain. Only this – and the support of my close family, friends, and colleagues – meant I could function somewhere close to normal over these months.
This chronic condition has not gone away. It never will. I am learning to manage my Trigeminal Neuralgia, which has included a reassessment of my professional life and significant changes in my businesses.
It’s not a case of giving up, but about managing your time and responsibilities within the confines of this condition. I am living with Trigeminal Neuralgia, not defined or defeated by it.
Why Speak Now
While I have dealt with this privately for many months, I am very aware that others are also living with this debilitating condition. Some may experience the pain and not have a diagnosis to explain it. Some may face workplace discrimination or social alienation because of the pain they experience.
My purpose in going public with my diagnosis is to help explain a little about Trigeminal Neuralgia, improve understanding, and show others that this condition isn’t the end of you. Yes, changes must be made to your professional and personal lives to manage the TN effectively, but it can be done.
What is Trigeminal Neuralgia?
Trigeminal Neuralgia is explained as a severe facial and in some cases head pain condition characterised by intense, sudden, and recurring episodes of pain originating from the trigeminal nerve. The condition can be incredibly distressing and have a profound impact on daily life.
Living with TN poses numerous challenges, both physical and emotional. The constant pain and discomfort can limit mobility, leading to reduced independence and hindering daily activities. Simple tasks like walking, dressing, or even holding objects can become arduous.
Furthermore, the pain can be emotionally draining, causing frustration, anxiety, and depression. Coping with the unpredictability of flare-ups and the chronic nature of these conditions can be mentally exhausting.
For two years, I have been running businesses and building a new platform in the competitive, challenging world of crypto while living with this. The way I am living and working now is a reflection of the need to manage this chronic condition.
High Pain Threshold
Having a high pain threshold can provide individuals with an advantage when living with TN. This has certainly been the case for me.
A high pain threshold refers to the ability to withstand pain for more extended periods or at higher intensities before it becomes intolerable. While this trait is not universal among individuals, those who possess it often exhibit remarkable resilience in managing their chronic pain.
Trigeminal Neuralgia Coping Strategies
Living with TN requires a multi-faceted approach to pain management. As someone with a high pain threshold, here are some of the coping strategies of which some I have found helpful:
- Mindfulness and Relaxation Techniques: Practices such as deep breathing exercises and meditation can assist some in reducing stress and pain levels.
- Physical Therapy and Exercise: Engaging in physical therapy and tailored exercises can help improve joint flexibility, muscle strength, and overall mobility, while also providing natural pain relief.
- Medication and Treatment: Working closely with healthcare professionals to explore appropriate pain management strategies, including prescription medications, nerve blocks, and other targeted therapies.
- Support Networks: Connecting with others who understand what it is to live with chronic pain can give you a sense of belonging, emotional support, and empathy. Support groups, online communities, and counselling services can be invaluable resources.
- Lifestyle Adjustments: Making adjustments to daily routines, implementing ergonomic aids, and pacing activities to avoid overexertion can help conserve energy and minimize pain.
Just the Beginning
Living with Trigeminal Neuralgia is immensely challenging due to the chronic pain the condition brings.
Thanks to my high pain threshold, I have been able to show some resilience, especially by deploying the coping strategies mentioned above and reassessing my personal and professional lives.
My first message is that if you are experiencing extreme pain regularly, don’t wait it out like I did – go to a doctor.
My second message is not to see a Trigeminal Neuralgia diagnosis as the end, but as the start of something new.
My third message is do not judge others just because you can’t see anything ‘wrong’. You don’t know what any other person is going through, physically or emotionally, and we all need to be a bit kinder and more understanding.
Finally, if you are able to manage the pain of this chronic condition, as I am trying to do, then do not be ashamed of making the changes in your work and home lives that are essential for you to continue being the best possible version of yourself that you can.
If you’d like to learn more about TN, or seek support, you can visit the Trigeminal Neuralgia Association.
