TN Video

This is my first attempt at making a video. Hopefully it will help raise awareness of TN and the need for an awareness day and a lot more knowledge, funding for research and information for health care providers and the public. I hope that in some way my video will help us raise awareness of a condition that devastates lives.

A Little Advice and Advertising!

Several years ago I met an amazing musician who had been called upon at the last minute to save a group of amateur dramatics from missing their opening night. His talent was something you could hardly miss, he was far too good to be there, but out of generosity he did the week long performance and helped the drama society out.

As years passed I forgot about him, until seeing his name on a friends Facebook page. For the life of me I couldn't place him so I had to message him and ask how I knew him. We finally worked it out and it was only then that I remembered how talented he was. He sent me a link to his website which had a full list of all the CDs he'd made or featured on. Imagine my surprise when I realised that I owned several of his albums and they were ones I listened to quite regularly for relaxation, meditation or some crystal therapy.

Since then I've bought more of his CDs. Not because I want to do him a favour and boost his sales, I don't believe he'd appreciate that being anyone's reason to want to own his work. But there is the luxury, on his site, to have a listen to each CD before you purchase them. In recent years I've bought some excellent music, which is why I want to share the link to his website.

Anyone who finds relaxation to be beneficial would really benefit from a quick look and listen. I can assure you,that Chris Conway either already is, or will be, a part of your CD collection and his music will certainly become a tool to help you relax and find peaceful sleep.

I will resist sharing my personal favourites, because nobody is drawn to exactly the same piece of music. In the same way that I don't find the sound of water relaxing, someone might find my choice to be anything other than therapeutic.

Please find a few minutes to have a look and a listen.

http://www.chrisconway.org/index.html

Trigeminal Neuralgia - Public Service Announcement

This is a Public Service Announcement that has been made by the Facing Facial Pain
Research Foundation. It is something that we are circulating far and wide and sending
to television stations around the world. We are hoping that CNN will pick up the
story which will raise an enormous amount of awareness.

http://ireport.cnn.com/docs/DOC-1019024

This is the comment I made in the hopes that the film and the comments combined
might convince CNN to help. This would be televised internationally!

Trigeminal Neuralgia has truly destroyed my life as I knew it. I've lost almost all of my friends, I've lost my nursing career, my freedom, independence, my place in society and I've lost myself. After several different medications I'm now taking a large cocktail of meds that have a multitude of horrible side effects. If I'm lucky enough to sleep it is usually drug induced and it is the only time I'm not in pain. However the pain often wakes me or prevents me from sleeping. If anyone puts 'the suicide disease' into Google, TN is what they'll find. It is widely accepted to be the worst known pain in the medical field and yet, despite all of that, it is still so unknown. If the WHO were to add TN to their health topics list, the world would address this condition. Information would be widely available, more funding for research to find a cure or better medications and give us sufferers some hope. But without awareness and without informing people about this condition, nothing will ever change. People wait years for a diagnosis, have extensive unnecessary dental work done and visit several different specialists before having any idea what they are dealing with. At that point it is often a long process before finding medications that someone can tolerate and after several years and the pain ever increasing, there are surgical procedures available. These are inadequate and can only offer, at best, a period of time with less pain. Many times, surgery causes further problems and an increase in pain.

Please, please help us to get this condition known. The pain is like nothing I've ever dealt with. Not a day goes by that I don't wonder how I will carry on with this 24/7 torture. How can 'the worst know pain, 'the suicide disease', be something even doctors have never heard of?? That's how serious this situation is. It isn't just our friends and family who have never heard of this, neither have many health care professionals. Without the help of other sufferers, the media, social networking sites and WHO this situation will never change. We desperately need to be given some hope for the future. CNN have the opportunity to make people aware of the agony of this condition.

                                                           Image by Nikki Samuel

Planned Emergency Care Please

I've just recently had another awful flare up. Taking all my daily medications and adding in the extras turns me into a zombie. I felt dreadful and nothing had touched my pain levels. Between them, Mum and Sarah spoke to NHS Direct, one of their nurses and an out of hours GP. Not only were we dealing with people who had never heard of TN but the Doctor asked to speak to me (despite me being unable to talk) and he questioned how somebody could still be in pain with all the medication I'd taken. I'd love to have been able to answer that, all I knew was that I was in tremendous pain and that he wasn't going to offer me any hope. He finished by saying, 'Hmmm, you take the maximum dose of Lyrica so I can't increase that. You shouldn't take another dose of morphine so I suggest you call your own GP tomorrow or your Neurologist who might be able to help. There is nothing I can do'! I managed to ask, in my best ventriloquist voice, 'How does that help me NOW'? And I thrust the phone back to Mum. There was a Doctor on the phone when I was desperate for help and, as usual there was nothing he could do. Apparently he told Mum if it was 'that bad' I should call for an ambulance. I didn't need an ambulance, somebody would have willingly taken me to the hospital, but he implied that I could be waiting there for hours and still not be given anything to help. That has been the scenario before, after a long agonising wait I've been sent home with nothing. I've also had an ambulance before now and the paramedic has told me that I have better pain relief than the hospital would give so he advised me to stay at home rather than go to the hospital. Yet I hear of people attending their local A&E or ER before now and I know for a fact that they've been given different medications either by IV or by injection. Surely there would be something they could try?

Since that night I've spoken to several people who are horrified to hear what happened and have told me that their Neurologists or Doctors have written down what they should be given in A&E or the ER if they have pain so severe that nothing they have at home will touch it. I wonder, why then, this has not happened for me. If other people living with the same condition have that to present to their local hospital, which will surely be backed up on the hospital notes or system, why hasn't anyone taken the time to offer that to me? You can bet your life that I've got that written down as a question to ask the next time I see my GP.

I need to know if there is either a hospital protocol for people who present to them in a severe flare up of a chronic condition or if there can be a suggestion given as to what they might be able to give to me in that scenario because next time, I will go to the hospital and I will insist, somehow, that they give me something to knock me out.

I'm making notes for my GP, notes for the Surgeon and notes for the Neurologist and Pain Management Doctor who I eventually see.

                    Image by Nikki Samuel

Who Are We?

Who are we? It's an interesting question isn't it? It's also something that appears to have triggered a recent debate on Facebook. Someone was asking 'Who are YOU'? The question was designed to make people focus on who and what they are now, not who they used to be, but today, with chronic pain, despite the many losses and with a positive angle on what we can do and who we are in the world. I saw and witnessed a variety of responses and emotions, but I knew immediately that I wouldn't contribute to the 'let's focus on the people we are' game that it felt like to me.
I found it even more interesting after my recent blog entry about the true differences between people with TN and how well their TN is managed. I did that exercise, within a TN support group, asking people to give me one word that describes their TN and then to tell me how well they consider their pan to be managed and with what. I did it in such a way that individuals knew I was writing a blog entry and that I would put some of the responses on a new TN Awareness Picture/Post. I was also prepared for my questions to stir up some emotion, because I was asking for information that might make people feel even more isolated or less alone. So, when I saw this question, I already knew that there would be a variety of responses and mixed emotional reactions, but sadly, I'm not sure the person who asked the question was prepared.
I believe, if we are prepared to dig around in the mind and the emotions of someone with TN we have to be aware of what might come next. It is an irresponsible exercise if we won't then accept how people respond. First, people might not be in the same mindset as the person asking the question, they might be in a place that is very dark, very painful and very different. Others might play along, but reach the end and realise that who they are isn't good enough, it isn't who they want to be or, it could be so heartbreaking to compare the changes from who they were to who they are now. I felt, that this exercise might be positive for some, but might lead others to an even darker, lonelier place.
If we ask a question, we shouldn't have an expectation of the answers we want, we should be prepared (at the very least) for some people to express their true feelings and for those feelings to vary. If you read some of the responses and think someone is 'wrong' or 'negative' then you aren't listening and should never have asked the question in the first place. As my last blog entry proved, nobody is the same, pain is not always managed and life is different for everyone.
I refrained from joining in, though I did the exercise in my mind. For me it stirred up a very sad and isolating reality, full of pain and completely devoid of joy. What made me even more depressed was that I knew my response wouldn't have been acceptable to the person who was asking the question. All I can say is please don't ask a question if you aren't prepared for honest answers and if you don't like someone's truth, keep your thoughts to yourself. Someone else's world might not be a place that you can even imagine and obviously haven't been to.

                                                           Image by Nikki Samuel