Dear Ellen

Firstly, I need to explain a few things, because using a blog entry to contact someone is quite unusual. My 'followers' (all 3 of them) will wonder if I suffered a bump on the head, but it's a small price to pay if I can get your attention!

Please bear in mind that I've used all of the typical ways of communicating, including the use of your website to email you. 1000 characters is hard to stick to, hence I've resorted to extreme measures! I've been emailing and tweeting you for over 4 years using various images, scan codes, links etc, but knowing how loved and respected you are, I haven't been surprised that my emails have failed to grab your attention. I also called your offices in Burbank California, from here in the U.K, not having a clue what I was going to say. But with the 8 hour time difference, it was late at night here and I believe that's a perfect excuse for my insanity! The young woman that I spoke to was lovely, but definitely thought I was a crazy Brit! I remember blathering on about how much I love you and your show and that I was desperate to get a message to you. To this day, despite all my various attempts over the last 4 years, I don't believe I've managed to get any of my message to you!

So today I'm trying something new.

Trigeminal Neuralgia (TN) is a condition that affects the 5th cranial nerve, causing severe, debilitating pain in the face, mouth, eye, ear, scalp and nose. We have 2 trigeminal nerves, one either side of our head and while most people have TN on one side, there are many sufferers who have bilateral TN. It is universally accepted, that TN is the worst known pain to science. Yet, it has remained unknown, by Doctors, Health Care Providers and the public for far too long.

In 2012 a sufferer from Boston, MA decided to look at ways to change this and decided that we should have an International Trigeminal Neuralgia Awareness Day on October 7th and our own awareness ribbon in the colour teal. She also started a website called TNnME which she updates regularly and is an excellent resource for sufferers and for sharing information to raise awareness. I met Toni Saunders in 2012 on Twitter and became one of many TN Awareness Fighters. Toni also started an online petition to the WHO asking for TN and other facial pain disorders to be added to their health topic list. This would provide more awareness, possible funding for research and better treatment options for all sufferers around the world. I have been very active in creating graphics for use on social media, reaching out to other sufferers and emailing mayors, members of parliament and many other people! While there are many, many things that have been important over the last 4 years, one thing that we remain very proud of, is the number of places that now light up teal on October 7th. These lightings have all been arranged by TN sufferers communicating with the relevant person at each sight. Please take a look at the impressive list which includes towers, bridges, buildings and monuments around the world.

http://www.tnnme.com/2016-light-up-teal-4-tn.html

On October 7th we are always online, posting pictures of events and spectacular lighting. But we use Twitter to help raise awareness by posting these photographs, using the hashtag #TurnTeal4TN
I speak for every sufferer of TN or facial pain when I ask that you join us on October 7th by wearing something teal and posting it on Twitter.

I am in no way artistic, but, to try and help, I have come up with a few very helpful suggestions.

A teal wristband. It could accessorise any outfit, but is often too well hidden!

  

A teal ribbon. Very subtle and often gets people asking questions. Good for awareness!

 

A teal wig. This could be fun and striking while raising awareness!

 

Teal boots or shoes. These could be big, fun clown shoes or a tasteful pair of loafers!

 

Teal earrings. A fashion statement that shout out to be heard. A great conversation starter!

 

A teal scarf. Not often needed in California but something lightweight could look good!

 

A teal handbag. What could be better than a big teal bag on your shoulder?! (Don't answer that)!

 

A teal shirt. Stylish, smart, fashion forward in a stunning shade of teal. A real awareness piece for any world famous actress/talk show host.

 

A teal hat! What could be more fun than a comfortable, slouchy hat?! Something certain to start an awareness conversation!

 

A teal bow tie, brooch and clowns nose. Nothing says 'Talk to me about teal' more than a rather eccentric outfit aimed at the 'Real Awareness Fighter!

 

Ellen, I am almost certain I've managed to identify something that you could wear on October 7th to help us raise awareness of TN - a condition that destroys lives and leaves us taking multiple medications or having major brain surgery, just for a chance to reduce our pain. What we've done is found some fun ways to raise awareness while remaining focused on the severity of this pain and all the sufferers around the world.

Please, please add your name to our awareness day campaign. I don't think you can even imagine how much of a difference it would make to our fight and our determination to make changes to the care and treatment options that are available to us. At the same time, we are all heavily involved in fundraising for The Facial Pain Research Foundation who are looking to find a CURE for TN and other facial pain disorders. They have some of the world's top scientists, giving their time and energy for free, to help people like me look forward to a brighter future. They are doing the research, in several different areas, relying totally on donations from the public. Please, take a few minutes to look at their website and see the magnificent work they are doing.

www.facingfacialpain.org 

Here is our official Trigeminal Neuralgia Ribbon

 

Justification for MY Feelings

My facial pain started when I was 20 weeks pregnant with my first (and last) child. Because of this, medication wasn't available to me, neither were X-rays, scans or even complementary therapies. Those therapies are used during pregnancy, but only if you've had them before and as I never had, nobody would even touch me. I spent weeks and weeks in bed, hardly able to move my head and rarely eating. I stopped working because the pain was so severe, but, because my unborn baby was extremely comfortable, growing perfectly and showing no signs of distress, nobody seemed interested in me and my pain. In fact, all I kept being told was to 'wait until the baby is born'.

At approximately 35 weeks pregnant, I genuinely began to wonder if there was going to be a baby. After all those long painful weeks with nobody listening, after teeth were drilled into or removed unnecessarily, I started to think about ending my life. I was honest about it, to my Partner Sarah and to my Mum, saying that jumping under a bus would make them listen and realise that they'd failed ME. I thought it was the only option available to me and against my better judgement I was talked into seeing my GP, again. I talked to him about my thoughts of suicide, but even then he told me to hold on until the baby was born. He even prescribed medication for me to start immediately after delivery! I remember packing Cocodamol and Diclofenac in my 'baby bag' to take with us when I went into labour.

In all those weeks I was in bed, watching my bump grow, I was too unwell and weak to even feel the inclination to sit at my desk and look on the Internet for more information. I didn't read anything or research anything, I was told it was Atypical Facial Pain and I didn't think I needed to know anymore. In fact, as far as I was concerned, once my baby was born, the medication I had already been prescribed would take away this exhausting pain and I would throw myself back into my life and into motherhood. However, I'd reached a point where I was desperate. Even if I was able to reach my due date, they would still insist I continue for a further 2 weeks before inducing labour. I couldn't face the possibility of enduring another 3 weeks, let alone another 5. After doing everything to protect my unborn child, unless I could get him out and hand him over to Sarah, if I died, he was coming with me. I returned to my GP and I begged him to help me. At this point he referred me to an Obstetrician.

5 days later I was sat in the Obstetricians room, with 7 other health care professionals surrounding me. I had no idea if he could help or if he'd disregard my pain like everyone else had. To my surprise, his reaction was completely different. First of all he congratulated me on getting as far into the pregnancy as I had, which was the first time anyone had really acknowledged my pain and my strength. He said that because I was past 37 weeks, I was considered to have reached full term. He said he would induce labour on the following Monday (this was on Thursday) and that until then, I could take Cocodamol a few times a day. He saved my life that day, and the life of my Son, Harry.

Harry is now 9 1/2 years old. Since his arrival I've done a lot of reading on the subject of facial neuralgia's. I've read a series of medical reviews, journals, newspaper articles and I've even been featured in a few! Like anyone who has searched the Internet I've read the term 'the suicide disease' dozens of times. I could relate to that. I had felt that way and I had my suicide planned out in detail.

I had a good few years where medication and procedures helped me with my pain. I wasn't as active as before and had to be very careful of triggers, but I was able to return to work, albeit not in a clinical role, but as a research nurse. I wasn't the 'fun Mum' I always believed I would be, but I was doing the best I could.

Anyone who's read my blog will know that in 2010 my pain and my situation deteriorated. Despite the same medications and procedures my pain levels increased, I could no longer work and I was back to living in bed. I tried various different medications, but they either didn't suit me or they didn't help and I was back to feeling a similar desperation that I'd felt when I was pregnant. This time I didn't have to consider my unborn child, but now I had to consider my young, adorable, vibrant little boy who I loved with all my heart. The thought of leaving him was unbearable. So I fought for a referral to a Neurologist, who, after seeing a compression on my MRI scan, referred me to a Neurosurgeon.

My MVD experience is detailed in a few earlier blog entries. I won't repeat myself and tell it all again as it was so horrendous, but please take a look at the following entries, if you haven't read them already.

http://nikki-hopewhispers.blogspot.co.uk/2012/04/here-and-now.html

http://nikki-hopewhispers.blogspot.co.uk/2013/01/itu.html

http://nikki-hopewhispers.blogspot.co.uk/2013/01/speeding-up-or-slowing-down.html

http://nikki-hopewhispers.blogspot.co.uk/2013/01/outcome-to-date.html

If someone lives with chronic pain, they each have a story to tell. Everyone has their own experiences, of the pain and the impact it's had on their lives. We're individuals and surely we fight to be treated that way, not only by our family and friends, but especially by health care providers. No two scenarios are the same and we are entitled to feel however we feel about our OWN situation, nobody should dictate how we think or feel.

There is a new uprising in the debate about whether TN should be nicknamed 'the suicide disease'. It was given to TN (and several other chronic pain conditions, ie CRPS and Cluster Headaches) at some point in history. At the time those nicknames were given, treatments, medications and surgical options were very different. But despite all those changes, Trigeminal Neuralgia pain is the same as it was decades ago. If the pain doesn't respond to medications, if surgical options are unsuccessful, or worse, cause even greater pain, we are left with serious, invasive experimental procedures that are extremely costly and still can't guarantee any pain relief.

Perhaps situations like mine are rare. I know that only 1% of people who have MVD surgery are left with Anesthesia Dolorosa, but despite that, TN itself is a desperate situation if left untreated or if it doesn't respond to current medications or procedures.

I have little regard for 'nicknames' and I have never used the nickname for TN for public awareness posts. However, I have used the term to describe my condition to friends and family and I know there are times that people have completely ignored the name 'Trigeminal Neuralgia', but stopped and listened when I've told them the nickname and why it was given. It is still well documented that the pain of TN is one of the worst pains known. I struggle with depression as a result of my pain and the impact on my life. I have days, weeks, where I truly believe that I cannot live through another moment of this debilitating pain and I do think about suicide quite regularly. I have one reason for still being here and that's for my child. My love for him is greater than anything in the world. I could never leave him. However, that doesn't mean I don't think about it or consider it as an option, it means that he is the little person that saves me each time I find myself in that dark place. But I don't feel suicidal to scare anyone or to get a shock reaction from those around me. I don't feel suicidal because of a nickname or because I've been told that people do end their lives or even because I've lost friends, with TN, because they felt that suicide was their only option. I feel suicidal because sometimes the pain is greater than my ability to cope with it, because of all that I've lost and still have to miss out on each and every single day. Despite this, I believe I am still a fighter, a warrior , a survivor, and I continue to hold onto the threads of hope, even when those threads feel as thin as a cobweb. I am not a quitter, but at times I do feel defeated.

Maybe I'm the only person who feels this way, but questionable statistics and a historical nickname do not influence how I feel, the pain does. I won't allow anyone to dictate what name I should use, how I can describe it, the impact it has on my life or how I should feel. The nickname doesn't scare me personally, the pain and everything I've been through and am still going through, scares me; because it is worse than anything I could have ever imagined. However I respect that the nickname does scare people, certainly those newly diagnosed and the children and teenagers with TN. What we cannot do, in the midst of a discussion about 'the suicide disease', is belittle those who feel it, who fight the depths of despair that they feel leaves them only that option. Who are we to judge how someone else feels, they haven't lived the same experience or fought the same battle. I live in fear, because of pain, I refuse to live in fear in case my feelings aren't the same as other people's. I cannot live in fear of upsetting or alienating a community that I am a part of, where I belong and feel at home, because they might not 'approve' or 'accept' how I feel. In my mind, Trigeminal Neuralgia (and the other contributing factors that cause my additional pain), can and do drive people to suicide. The nickname, therefore, is very appropriate in my personal opinion.

There are times in life, where having severe emotional or physical pain, leads someone to believe that there is only one option left.

                                      

                                                           ~ Images created by Nikki Samuel ~

                        

    

It Feels Like I'm Starting Again

It might seem like an exaggeration, but in the last 12 months I have attempted to write a blog entry, only to find I haven't the energy, the patience, or at times, anything new to say. When you bear in mind that a blog is like a diary of events that you feel safe to share with others, I think that says a lot about my life and the isolation I live with.

Over the last 3 years I have come to 'know' my own face. Despite disliking everything about it, I know it well and that makes me very aware of new or changing sensations. I have recently been diagnosed with Cluster Headaches, but somehow that diagnosis doesn't seem to fit. I have also struggled to get an actual 'name' for the burning, dragging numbness in my face. I've had no answers from my own Neurosurgeon, in fact he referred to it as 'unfortunate'. Not to state the flipping obvious, but unfortunate just tells me it wasn't a planned outcome, it doesn't begin to tell me what it is or how to treat it. I have hardly talked to a GP since the one I really felt safe with left the practice a few years ago. The GP that I'm registered with has had some issue with me for a while, so I've felt unable to see him and talk to him. I've relied on telephone calls rather than GP visits. Also, starting to see different Doctors and feeling desperate to find one that listens, understands and wants to help takes up a tremendous amount of energy. Having to tell your story over and over again, is really difficult, but it's essential if you want answers. Sometimes, on this journey with chronic pain, it's alright to stop, rest for a while and then start the search again when you feel ready. I've met so many people along the way who don't allow themselves this time to rest and keep searching, travelling and hoping for answers; in the end, it is the very search itself that makes them feel hopeless and desperate.

Earlier this year I knew I needed to find someone who had a good, if not excellent understanding of TN. The Pain Management Dr I've been seeing has very little knowledge of facial pain but also, gives the impression that he just doesn't want to be there. Rather than discuss my issues, I tend to talk and cry and he tends to 'grunt'. I have no idea if this is in agreement with anything I've said or if he's even aware of what I'm saying. Knowing that this Dr is my only hope for adequate pain relief hasn't helped at all and at times I've felt really desperate for someone to help me, that I've found myself battling more and more depression. It was the realisation that he is never going to help and the serious bouts of depression that made me start to look for someone new.

After reading about different Neurologists, Neurosurgeons and Pain Management Specialists, I found someone who, from the information available to me, appeared to specialise in cases similar to mine. I decided to be proactive and called his Secretary. To my surprise he had availability just a few weeks later at a private hospital in Bristol. 

It was a long, painful journey down to Bristol, as I've only been in the car for a maximum of 15 minutes in over 3 years, but, this Dr finally gave me some answers and some options to explore. He actually couldn't say whether I had TN because he wasn't able to examine my face with any accuracy. My trigeminal nerve is permanently damaged and I do have Anaesthesia Dolorosa (AD), which occurs in less than 1% of people who have a Microvascular Decompression surgery (MVD). This was why he couldn't do a thorough examination of my face.

The Columbia University describe AD as, 'One of the most dreaded complications of the treatment of trigeminal neuralgia.  It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face, with pain present within the numb area. The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain.  The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and “heaviness” can also be part of the pain symptoms. Often there is eye pain.  Cold increases the feeling of numbness sometimes making the face feel frozen'.

I've read a lot about AD since my surgery so the diagnosis wasn't a shock. It was disappointing, because I know there's no treatment and they were words I've been dreading to hear. He did tell me that he's performed Deep Brain Stimulation (DBS) on 4 patients with similar symptoms and all are doing well. However, he also told me that DBS isn't funded by NHS England and that it would cost me £25,000 - £30,000. It's a very long, complicated surgery (some of which I would be awake for) and with no guaranteed outcome it feels far too risky and terrifying. My feelings may change, but I cannot imagine having surgery of any sort, let alone a much riskier brain surgery.

I was also told that I have Occipital Neuralgia (ON). This has occurred following my MVD. The nerve has possibly been damaged during the craniotomy or it has adhered itself to the scar tissue. ON causes pain across one side of your scalp and in my case it radiates from my neck and ends in my forehead, just above my eyebrow. It is a very strong, debilitating pain, making the scalp very sensitive to touch and has similar electric shock like symptoms as TN but over and across your scalp. This diagnosis was a shock and this was when I found out that I don't have Cluster Headaches. He was able to examine my scar and the area surrounding the occipital nerve. He told me that post craniotomy ON is rare, but it does happen. I seem determined to be in the 'rare' group for everything when it comes to anything to do with my MVD and I have to admit I'm angry and frustrated about that.

This Dr recommended Inpatient Pain Management Therapy, but as yet I haven't managed to find anywhere local that runs a programme like this. I can only imagine that weaning off medications and titrating new ones is a very different experience as an inpatient. There would be someone there to talk to about side effects or to decide that a certain medication isn't going to suit you. Treatments for side effects, support, one to one therapy and maybe, ending up on a cocktail of medication that has better results and improves quality of life. This is what I'm hoping inpatient pain management could offer and that gives me hope. 

Why then, if I have a little hope, do I feel so depressed? 

Enough

Have you heard the saying, 'I wish you enough'? 

Well, the story is about an old lady who is at the airport, saying goodbye to her Daughter. Somebody close by heard her say, 'I wish you enough'. After her Daughter had gone through the gate, this person was believed to ask what it meant. According to the story, this was her explanation.

"When we say, 'I wish you enough' we are wanting the other person to have a life filled with just enough good things to sustain them". She explained that it was passed down by generations and continued to recite what she obviously knew by heart.

"I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye."

Author Unknown

I often think about saying or writing this wish to people, but have always avoided it. I don't want to be too clichéd or feel I have to explain it. I worry that it might sound as though it lacked sincerity. However,  I really like the sentiment.
The Oxford English Dictionary defines the meaning of the word 'enough' as, '

As much or as many as required'. Surely what one person considers to be the ideal amount, a suitable level or appropriate measure will be different to the next person? But the biggest factor in this of course, depends entirely on the subject or topic you're talking about. It could be any of the things written above in the story, in fact it could mean anything.

As somebody with chronic pain I use or think the word 'enough', quite a lot. I describe myself as 'not enough' or 'not good enough' and live with feelings of inadequacy most of the time. I don't earn enough because I can't work, I haven't played with Harry enough because I've had to rest or I didn't achieve enough today because I was struggling with medication side effects. The list could go on. Some may say that it's easier or that we're more inclined to focus on the negatives and I'm sure there is some truth in that. However, I can honestly tell you that there's nothing 'easy' about believing you aren't good enough. But this is the reality, in my experience, of most people who live with chronic pain.

Unrelenting, debilitating chronic pain is exhausting. The implications and the effects of chronic pain are devastating. Depression and feelings of low self esteem caused by chronic pain are truly horrendous. Yet, despite this, you can be enough, achieve enough and feel enough. It's really a matter of realising, that within your limitations, you are here and in some small way, you are experiencing life.

I live for the moments when I feel nice and however short they are, I have to accept that they're enough. I know that I achieve what I can, when I can and either way, I'm not inadequate. I might have days and days where I feel it, but I have moments where I know it's not true. For as long as my life has to be dictated at some level, by this griping, burning, zapping pain in my head and face, I will accept, when I can, that I am enough, I am giving enough and that moments of happiness are infinitely better than not allowing yourself to see them or feel them.

Every single person is given the opportunity to have enough, if they let themselves. The secret is finding the way and not allowing the pain to mask everything that's good in your life. I don't manage this all the time, not even every week, but I'm learning and eventually I'll start to notice other times where I'm being given enough. 

I refuse to live my whole life feeling inadequate. Right now I'll accept that they'll be days, maybe longer, but I won't let myself miss out on having and being and feeling 'enough'.

To anyone who might be reading this,

I wish you enough.

Nikki

                                  Graphics created and owned by Nikki Samuel

Fundraising

In 2013 I was very active in the First International Trigeminal Neuralgia Awareness Day, on, and leading up to October 7th. I had created graphics, a video, had some media attention with CNN and the BBC and whilst not focusing on one area, I wore myself out. Several weeks after the awareness day I decided that I wanted to shift my attention to fund raising for the Facial Pain Research Foundation. We had a lot more people dedicated to the cause and as an International TN Awareness Fighter, I could still be involved in awareness, but as part of a much bigger team effort.

The only problem I could see, was how could one person, who almost never leaves the house and literally has no 'social group' actually raise any money? All the ideas I had involved large numbers of people, walking, racing, sponsoring or gathering together for a fete or gala. Unfortunately, none of these were things I felt able to do. So for someone who spends a lot of her life in bed, I admit that I was beginning to feel defeated. 

But then I started to listen to what my fellow TN sufferers wanted and that seemed to be something to wear; an outward sign that they were supporting a particular health condition/cause. So, I started to put some money aside until I had enough to buy some Trigeminal Neuralgia wristbands in our colour teal. Confident I would make back my initial outlay, I also looked into sourcing a ribbon shaped lapel pin and, within 3 days, I had a design I liked. Somewhere on the other side of the world, manufacturing began! These were items I could sell and it was something I could do on my own, without crowds of people and from the comfort of my living room.

I bought some small teal organza bags for the lapel pin and white organza bags for the wristbands, so I could make the presentation of the items look even better. I bought a large bag of dried lavender and I put a small scoop into each package, to make them smell nice when they were opened. I knew that these items were selling to TN sufferers and I sincerely wanted them to smile as they opened up their package from the UK, not only to find their awareness items, but also to see that I'd given them some thought and paid attention to detail. There are days that TN sufferers can't find anything to smile about and I wanted their package, despite being a reminder of the pain they live with, to give them a reason to smile. That in itself was a big success!

I set up a new email address that I would give out purely for awareness items, I knew I had to keep orders separate from my personal email because I get so confused, so easily. I was helped by a friend and fellow TN'er in the US - Debbie Murphy, to set up a spreadsheet that kept a tally as I added each order. That spreadsheet helped me keep myself up to date with invoice numbers, payment details and also if the package had been sent. But because of my medication and the memory issues I have, I had to keep on top of orders and payments as they came in and I needed to keep my documents and files updated. I did have a couple of days, where my pain levels were too high for me to even package an order, but people were patient and very supportive. Even though some people had paid, they were more concerned about my well being than their orders. I was so touched and calmed by their responses. It took me several days to send out the invoices, which involved a lot of concentration for this medicated mind of mine, but I eventually got through them all!

The wristbands and lapel pins sold out within 10 days. Orders were sent to Sweden, Finland, Ireland, Italy, France, Germany, Scotland, Australia, New Zealand, Wales, America, Jersey and Canada. I sent a few to well known people and celebrities for promotional purposes and kept one for myself for my hard work!

In total I raised £1500 (just under $2500 US).

If we believe that one person can't make a difference, they never will. But my fund raising project proved to me, that we can all make a big difference. If we spend too long looking at what we can't do, we'll lose sight of the things we can do. I was feeling defeated by my personal situation and believed that in isolation I couldn't raise any money. There is something everyone can do, if they put their mind to it. Having paid the large one off payment for the lapel pin mold, I think I will invest in another batch as there are still people asking for them. But for now, I have our Second International TN Awareness Day to think about and I have more people and places I hope to ask for support. My TN prison prevents me from doing a lot, but with my trusty iPad and the ability to send emails, use Twitter and contact people electronically, I remain passionate about TN awareness, the Turn Teal for TN campaign and raising money for the Facial Pain Research Foundation. 

                Graphics created and owned by Nikki Samuel