- Posted August 31, 2013 by
Trigeminal Neuralgia - My Story
Her baby boy was safely born in February 2006, and Samuel started medications to relieve her pain. But they had little effect, and things seemed to be getting worse. “What was once an aching, throbbing pain was now also stabbing, shocks were flying across the left side of my face, I couldn't tolerate any kind of touch,” she wrote.
In 2008, Samuel had to admit defeat: She left her job because of her illness. It was only in 2012 that she saw a neurologist and was given a new diagnosis of Trigeminal Neuralgia. The disease affects approximately 12 out of 100,000 people per year and is more common in women, according to the Mayo Clinic.
Samuel’s goal is to educate people about the disease, as well as let people know about the first International Trigeminal Neuralgia Awareness Day on October 7, 2013. “Currently it is taking years for people to get a diagnosis because most health care providers haven't even heard of it. If the World Health Organization would take up this health topic, that would change and worldwide there would be much better care and continuity,” she explained.
“It would be wonderful if people learned about a condition that is universally considered to be the worst known pain to the medical world,” she said.
- zdan, CNN iReport producer
I am writing my story in the hope that it will help someone suffering with any form of facial pain. Having lived with pain since 2005 I know how poorly understood these conditions are. I know that many health care providers have never heard of the various types of facial pain and I know that a lot needs to be done to change this.
Trigeminal Neuralgia, the facial pain that I live with, is universally considered to be the worst known pain and at this point there is no cure. With greater awareness people like me might finally be understood, be accepted for disability benefits, have more funding made available to find a cure or maybe, better treatment options.
My facial pain started in October 2005. At the time I was 33 years old, I was 20 weeks pregnant and I was working as a Senior Staff Nurse here in the UK. I had a wonderful career, doing something I was incredibly passionate about and was expecting my first child, so I felt like life was actually on track!
After taking a bite of fruit loaf one afternoon, I felt an excruciating pain across the left side of my face. It was so intense that I thought I might fall to my knees, but within seconds it had calmed down. After tolerating the pain for a few days I went to see my GP. I described what I was feeling as aching, throbbing pain, with sudden bursts, but due to my pregnancy there was nothing I could be given. After seeing my Doctor, I went to see my Dentist as I believed the pain was coming from my teeth. Over the next several weeks I was treated for Gingivitis, an infection. Healthy teeth were drilled into in search of decay (I couldn't have an x-ray as I was pregnant) and ultimately, I begged to have a perfectly healthy tooth extracted. I also kept begging my GP for help and yet, despite all of this, I never had a moment of relief. In fact, the pain gradually got worse, I had to stop working as I could hardly get out of bed due to the severity of the pain whenever I moved. My Doctor, by now, had diagnosed me with 'Atypical Facial Pain'.
I was 38 weeks pregnant when I reached the point that I knew I couldn't go on. I couldn't take any medication, had spent weeks in bed, had lost interest in the world around me and although I wanted to protect my baby, I was very depressed, crying all the time and I thought that my only hope of being free from the horrendous pain, was to take my own life. My Partner spoke to my Doctor and asked if he would refer me to a Obstetrician to discuss the pregnancy because she was so concerned about me. The Obstetrician, not only congratulated me on getting so far while being in so much pain, but he also agreed to induce my labour four days later. At 4.30pm on Tuesday 14th February 2006 I gave birth to a healthy little boy. By 6.30pm I had taken the first dose of medication prescribed for me by my Doctor.
Life with a newborn was incredibly difficult, but between us, we managed. Once my Partner, Sarah, returned to work, my Mum would come and spend the day with me, until Sarah came home. I was never really able, even from newborn, to be on my own with my child because of the pain. The new medications had a lot of side effects, but I felt if I pushed myself through them, the pain would eventually stop. Sadly, despite trying different medications, the pain never stopped. I was now referred to the Pain Management Department.
I returned to work after my 6 month maternity leave, as a Research Nurse, but not in a clinical role. I was seeing a Pain Management Consultant who had tried various procedures to try and help. I had nerve blocks, steroid injections, lidocaine infusions and had tried a long list of medications. I continued to work as long as I could, though I had many episodes of sickness absence because of the level of pain. Finally, in 2008 I had to admit defeat. I was forced to take ill health retirement. Losing my nursing career was devastating. I had achieved my dream and there it was, being taken away from me by this relentless, debilitating pain.
While my pain grew more intense, reacted to different triggers and became more debilitating, my diagnosis or treatment never changed. What was once an aching, throbbing pain was now also stabbing, shocks were flying across the left side of my face, I couldn't tolerate any kind of touch, or cope with the wind on my face and the water in the shower felt like needles on my cheek. The medication was hardly working and nothing I did was giving me any relief.
I carried on like this for a few years, fighting serious bouts of depression, weeks or months in bed with constant, untouchable pain that was progressively getting worse whilst trying to be a Mum to our little boy. Slowly friends, family and ex-colleagues started to disappear from my life. It was difficult for people to understand the severity of the pain, it was invisible and I could imagine that it was hard to appreciate that pain in the face could be so disabling and life changing. So, some just stopped messaging me while others were tired of the constant apologies for cancelling and being let down at the last minute.
I did a lot of research, participated in online support groups and forums, and was confident that I needed some form of investigation and perhaps more intervention. So, in 2011, 6 years after the pain had first started, I decided to do a self referral to a Neurologist at a local private hospital (this forced my GP's hand and he did write me a letter to give to the Consultant. He had previously refused my constant requests to be referred to a neurologist). This meant I would need to pay, but I had so many questions that were unanswered, so I felt it would be worthwhile. As it was a private hospital I was able to see him within a week. He was shocked and surprised to hear my story and couldn't understand why I hadn't seen a Neurologist sooner. He was very thorough, took a very detailed description of my pain, medical history and all the medications and procedures that I'd tried. After 30 minutes he told me that he thought my diagnosis was wrong (though never said what he thought it could be), that given my history (I'd had a significant nerve problem with my left leg several years before where the Neurologist thought I might have MS - but all my tests were clear) I should have had an MRI scan at the very least. He ordered an MRI scan and agreed to continue my care at an NHS hospital. I had an MRI scan very soon after.
On the day of the results I was relaxed and had convinced myself that the scan would show nothing abnormal. However, when I arrived in his office my Neurologist showed me on my scan where a large blood vessel was pressing on my trigeminal nerve. The next step, if I agreed, would be a referral to a Neurosurgeon. It is impossible to describe my feelings at that point. Had the blood vessel been on the nerve all along? Had it done any permanent damage? Would I have found relief years earlier if I'd seen a Neurologist? And, I had no idea whether to feel pleased, devastated or perhaps a little of both.
In January 2012 I saw the Neurosurgeon. He seemed to believe I had Atypical Trigeminal Neuralgia (ATN) but also symptoms common with Classic Trigeminal Neuralgia (TN). This made so much sense. I had the constant, throbbing, aching pain that is often seen with ATN and the electric shocks and sensitivity to any kind of touch that was common with TN.
He offered to do a Micro Vascular Decompression (MVD) but stressed that it might not have any impact on the ATN pain, but is often beneficial for people with symptoms of TN. We discussed all the possible complications and I went home to spend some time thinking and talking about it. It occurred to me that I'd exhausted the medications usually used for TN and ATN, I was barely able to function, let alone be the Mum I wanted to be. I started writing a blog, to document my decision making process, so if the outcome was very bad I would have something to look back over and be able to read and reread how I felt at the time. After further discussion with my Partner and my family I called him and told him I wanted to go ahead. I could only hope that it would give me a period of time that I could completely dedicate to my Son, take him out, play with him, teach him to ride a bike. My surgery was booked for March 23rd 2012 - the first day of Spring.
I vaguely remember waking up in recovery with the left side of my face completely numb, I also remember having a lot of Cerebral Spinal Fluid (CSF) leaking from my nostril and I was still in pain. I say vaguely, because I genuinely don't really recall that time at all. I am stunned when I look online as it appears I uploaded a photograph of my MVD site, but I have no recollection of it at all. The reason for this, I now know is because I was very unwell. I don't recall this either but I'm told that 48 hours after my surgery I was struggling to breathe. The next thing I do remember, is waking up in Intensive Care, I was attached to a ventilator, I had a tracheotomy, tubes and wires everywhere and I could hardly move. Nobody can explain what happened to me, but I went into massive pulmonary oedema. I was put into an induced coma and I was dying. One of my lungs was completely full of fluid and the other was half full and still filling. My family were told to prepare for the worst because the Doctors thought I wouldn't pull through. They bought me out of the coma 12 days later and very slowly, I started to improve. I battled and I fought so hard whenever the physiotherapist came to see me and whenever they turned down the level of support from the ventilator I vowed that I would be fine. Several times I fell asleep, only to be told they'd had to turn it back up again. Breathing through a tracheotomy and being unable to communicate; IV lines in my neck, feet and wrists; a feeding tube up my nose; cables attached to monitor my heart and other important leads and cables made being a patient on Intensive Care absolutely terrifying and I felt very, very vulnerable. But, determination and an obvious will to live got me through those days and 12 days later I left intensive care!
Everything that happened in Intensive care made it the worst days of my life. I suffer nightmares and have awful flashbacks. I still have TN, ATN and now I also have Anethesia Dolorosa (AD) which is a result of the surgery and indicates that my nerve was unintentionally damaged. My pain is worse than it was before my MVD. To add insult, during the procedure, the small sponge couldn't be put into place to protect my nerve because I was bleeding so heavily and it kept 'floating away'. They did manage to 'move' the blood vessel but it seems the nerve is now permanently damaged. I am numb on almost the entire left side of my face (nose, ear, mouth, eye, scalp, cheek) and I have cuts on my tongue and inside my cheek from being repeatedly, obliviously bitten. I also have to wear glasses because I have no feeling in my left eye, it would be easy for debris to get into it without my knowledge. The pain from the AD is extreme, it responds to the tiniest temperature change and on top of the original pain it is all excruciating. I now spend even more days in bed, dosed up on morphine and the rest of my cocktail of medication and hardly able to move and I never leave the house. My recovery has been slow and my mood has been very low at times. I struggle to understand why my body fought so hard to survive, when I was going to live with even more pain.
Nobody can tell me that facial pain disorders, that Trigeminal Neuralgia doesn't warrant greater awareness. It is only by increasing awareness, educating health care providers and the public, getting more funding to find a cure or treatment, that will prevent more people having to live through this pain. It is called 'The Suicide Disease' because people can see no other way forward, because eventually they run out of reasons to hope. But I have to live, I have a 7 and a half year old little boy who needs me, a Partner who loves me dearly and even though I'm often in bed, unable to move, they both know I love them. Thankfully, those lives need me, because I believe I may otherwise have given up all hope by now.
I cannot stress enough, the difference it has made to talk to fellow sufferers of TN or any other form of facial pain. Within online support groups and friendships with other sufferers, I have witnessed so much compassion, understanding and courage. These friends have seen me through some of the darkest times in the last few years. I believe it is vital to find a support group, either on or offline. For me, my online friends have been my lifeline, a place to share hopes and fears, to talk about the good days and the bad and to be a constant in each others lives. TN has taken away many things, but it has given me the chance to 'meet' some amazing people and to make lifelong friendships with people in different parts of the world.
The Facial Pain Research Foundation have a mission. Their aim is to find a cure for TN within 10 years. Having spoken to the Founder, Michael Pasternak, I've been told that they are working with some top Research Scientists and already have some interesting findings. If we know that somebody somewhere is looking for a cure and not just another medication or an even more invasive, risky procedure, it gives us hope. Not just hope for ourselves, but also hope for future generations. I want to imagine a world where nobody has to survive with this pain.