The Most Excruciatingly Painful Condition Being IGNORED By World Health Organization

I believe the title to the press release is perfect to get people to open the e-mail. I really hope we get some response. Here is the link and also the press release


http://www.tnnme.com/tn-press-release.html

Trigeminal Neuralgia

We are asking the World Health Organization to take action on Trigeminal Neuralgia (aka "Suicide Disease") & Facial Pain Disorders by adding Trigeminal Neuralgia to their “Health Topic List" 

Trigeminal Neuralgia (TN) is a chronic severe pain condition that affects the trigeminal or fifth cranial nerve.   Several theories exist to explain the possible causes of this pain syndrome. It was once believed that the nerve was compressed in the opening from the inside to the outside of the skull; but newer leading research indicates that it is an enlarged blood vessel - possibly the superior cerebellar artery - compressing or throbbing against the microvasculature of the trigeminal nerve. Such a compression can injure the nerve's protective myelin sheath and cause erratic and hyperactive functioning of the nerve. It causes extreme, sporadic, sudden burning or shock-like shooting pain in the eye, lips, nose, scalp, forehead, cheek or jaw that lasts anywhere from a few seconds to as long as two minutes per episode. These attacks can occur in quick succession. The intense flashes of pain can be triggered by vibration or contact with the cheek i.e. shaving, washing the face, applying makeup, brushing teeth, eating, drinking, talking, or being exposed to the wind.  Trigeminal Neuralgia is considered one of the most painful conditions known to man.  Trigeminal neuralgia is a long-term condition - a chronic condition - which usually progress over time.   Trigeminal Neuralgia in many cases is resistant to the best available therapies, and tragically linked to depression, fear, fatigue and suicide. Many people go undiagnosed for years.

It is estimated that 1 in 15,000 or 20,000 people suffer from Trigeminal Neuralgia, although the actual figure may be significantly higher due to frequent misdiagnosis.

It is thought to affect about four million people worldwide.

The on-line group TNNME (Trigeminal Neuralgia and Me) is pushing across international borders to bring more awareness to the disease. 

TNNME is asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their “Health Topic List" 

By WHO adding TN to their list of illnesses, it will help to expand awareness, allow for access to resources and create opportunities for funding & research.

We are anticipating that WHO will agree to put Trigeminal Neuralgia disease on their Health Topics List and consider making October 7th 2013 International Trigeminal Neuralgia Awareness Day official. Trigeminal Neuralgia Ribbons have been manufactured and are currently for sale at http://www.tnnme.com/tn-awareness-day-ribbon.html. Profits from the ribbons are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of the world's most excruciating pain and to The Facial Pain Association’s awareness efforts.

This will benefit and save the lives of those that suffer with Trigeminal Neuralgia and Facial Pain Disorders.

For more information about this topic, email to tnawareness@gmail.com

What Do I Choose?

                                                             Image by Nikki Samuel

This post, that I made recently, really resonates with me. There are times, truly, where I really feel that I want to go to sleep and never wake up. There are times when I feel defeated by this pain, the side effects of the medication, the losses, the harsh reality of my existence. But when I feel stronger and I'm not feeling that sense of utter despair, I realise that I actually want something or someone to save me. By someone or something, I suppose I mean a Doctor or a Surgeon, to make me well again and give me back my life and all of those things that I took for granted.

So when I see someone feeling desperate and defeated, I believe they really want an answer, a cure, something more than a mere existence. Given the choice we'd choose life, free from this awful pain and rid of the ridiculous amount of medications that we need to keep in constant supply. All are either addictive or would be dangerous to just stop without being weaned off of them.

Given the choice, I choose life. I choose to be saved. I don't want to die and leave those that I love and who love me, I want to enjoy them everyday and smile at the small things that I know I miss all the time. I want to take Harry swimming, cycling, walking, to the movies, the theatre, on a train and to get him involved in community events. Instead, I have to rely on other people doing these things with him and to be honest, we aren't surrounded by lots of family and friends who can do all of these things. He's 7 and not only have I missed so much with him, he's missed out on so many activities and fun, exciting adventures that I believed I would be able to offer him if I had been able to be the Mum I believed I would be.

No, I don't want to die. I want to live. I want my life back but here in the present with my little boy and my Wife. But I can't have that. There's nothing coming along to 'save me' because there's nothing else that can be done to help me. So do I want to die? Sometimes, yes, sometimes, no. That's as honest as I can be.

Defeated

I'm certain, no matter what chronic pain a person has, they have times when they just feel defeated. There doesn't appear to be a chance to recharge batteries as the pain is constant and debilitating. I get exhausted, from the lack of sleep, side effects from medications and from the relentless pain. So when I hit those defeated times, as I have done several times I don't know what to do with myself.

This week I've hit one of those points where carrying on the fight has felt impossible. When it comes to it though, there's no easy way out of pain. I'd love to have a very long, undisturbed sleep. I only get a longer sleep if I've taken morphine and extra other medications, which gives me some horrible side effects and a hang over feeling for 24 hours afterwards. I also find sleeping difficult if it takes me away from Harry and Sarah. Guilt is an awful emotion and not one we're always able to control. If I could easily tell myself not to feel guilty about being in bed during the day/evening, I would. But sleeping when Harry is awake and leaving everything for Sarah to do on her own makes me lay there feeling guilty and unhappy. I wish there was a way I could stop that and just give myself permission to sleep!

Feeling defeated is so much bigger than feeling fed up. It overwhelms you and deep down you're searching for a way out. You feel as though the pain has beaten you and you have nothing left to fight with. Plus, it is a very, very lonely place to be. I'm lucky because I don't have to feel alone, I have people who care and people who will help me through this. Not just my family but also my friends. I find few understand it as much as my online friends who live with pain. Most have TN/Facial Pain and know the battle themselves. There is no doubt that TN is a disabling pain even though it's in the face. I find that very hard to explain to people who don't have TN or other facial pain disorders. I try, by saying that every footstep and every movement is another pounding feeling to the face. I imagine it's hard to understand that so much can be felt in the face. Only when you have pain there, do you realise that every single thing; talking, eating, moving, walking, laying, sitting, breathing can ALL be felt in the face.

Today I feel defeated. But I WILL hold on to strength and hope and I won't give up.

                                                          Image by Nikki Samuel

Comparison

We all know that everyone is different. As individuals we respond to everything in a different way; situations, personalities, politics, religion, education, medication and yes, evidently we respond to surgery very differently too. Of course it isn't just our response, it is our experience. No two people will ever be the same when they have a craniotomy and surgery on something as delicate and intricate as a nerve. We KNOW this to be true and we also know that recovery will vary in every single person in the world even if they have guidelines and 'expected' results, we won't all fit within certain time frames etc. It is obvious that my surgery wasn't straight forward. Not least because there was so much bleeding during surgery, but also because of the serious complications that came afterwards. The physical, emotional and psychological effects of brain surgery aren't something you can plan in fine detail, even if you have an 'idea' of how you'd like it to be, we have no idea what will happen and how our actual complete recovery will be.

I had a conversation today with someone who is 4 weeks post op. I found some of what she talked about very familiar, the tiredness, the aches and pains and the reality that you've had brain surgery. But there were many aspects of her recovery that I couldn't understand and didn't relate to. Firstly, she is TN pain free! She has some pain from the surgery site, but the TN pain has actually gone. Also, her surgery and recovery went to plan and time frames were as predicted. I can't imagine how those things felt or feel. I'm 10 months on and I felt inadequate and found I was defending myself for 'existing' this way. I no longer leave the house, for which I felt criticised as another person pushes herself to do things for her child. I felt as though I was being told I wasn't trying hard enough and at this point in time, I can honestly say, I am.

Any joy that a person feels can be dented, squashed and belittled when we compare ourselves to someone else. It is easier said than done, but very wise not to compare ourselves to anyone.

                                           
                                                              Image by Nikki Samuel

Positive Thoughts

I'm really enjoying Paint Shop Pro. I used it years ago when I used to use a particular chat room and make avatars. I know only the basics of how to use it, but I can learn little by little, as I need to do. So, I'm finding positive, inspirational quotes and finding backgrounds that I like and putting the text onto them. The pleasure of getting it to look 'right' or to be Virgo friendly (us Virgo's are real perfectionist when trying to create something) is actually stimulating my mind and helping me relax and focus on the positive words and quotes that I'm using. I work for a while on the TN Awareness Day campaign in whatever way necessary and then spend a little time making my own Inspirational Quote designs. I've also been trying to create other designs that we can use for our TN awareness, to either post on Twitter or Facebook, that will try and capture the attention of people.

It's nice to be able to say I'm enjoying something. It gives me some pleasure to see other people sharing the posts and being able to relate to them. If it benefits other people then it is even better, but the main purpose of what I'm doing is to focus on something, to create a finished post and to share it with other people. If it's all I can achieve for a few hours then it's better than nothing. We all have to feel a sense of achievement, whatever it is and however small.


Be prepared for the fact that I will probably be adding lots of my images for a while!