From This Moment On...

I think it is fair to say, from a personal perspective, that the First International TN Awareness Day was a success. I was interviewed by the Health Reporter at the BBC and the piece was shown on the East Midlands Today news the next day. My story (plus the stories of 3 other sufferers who I know) was published on the CNN website and even made their front page news! Many other personal stories were published in local newspapers, other news items in the USA and all the places that did light up teal made the day quite spectacular! We certainly made people aware of TN, though have a lot of work to do to now include other Facial Pain Disorders. The awareness campaign needs to move forward, with serious attention to it being truly International, needing some explanation from the WHO about why ALL Neurological conditions are currently listed under Mental Health, including pain and creating more and more information to make available in hospitals and dental surgeries. I believe next year will be a bigger event, but I am ready to fight a slightly different fight.

Something that was really highlighted for me, during the last 12 months was the need for more research. At that stage I wasn't aware of the work of the Facial Pain Research Foundation. During the last year I have become very interested in their work and have a real passion and desire to help them move forward, even faster if possible, with their current research. Not only are they looking for a CURE for TN and other Facial Pain Disorders, they are also looking to identify a possible gene that predisposes someone to TN. If that can be achieved, they are looking for a treatment to prevent TN from occurring. It is possible, that in my lifetime a cure and prevention could be found and I want to help.

After discussing fundraising and donations with Michael Pasternak (one of the Founders of the Research Foundation) I have decided that I would like to put my energy into helping raise money for the research site here in the UK (London). I don't intend to abandon the awareness campaign, but in the last few months it became more and more apparent that I was putting ALL my energy into raising awareness and there are others waiting to jump into my shoes. There was so much to do and my energy and ability to function is generally short lived, so whenever I was upright and awake I was on the computer or my iPad busily sending e-mails to Doctors, Newspapers, famous landmarks, Government, TV stations and hospitals as well as creating posts for people to use and share on Facebook. That precious time was always the time I would spend with Harry and I was pushing myself so hard it became obvious that I was making my pain levels worse and for longer periods of time. I was neglecting my family and myself and I knew I couldn't continue at that pace. In my determination to raise funds and 'beg' for donations, I will ensure I only work on this during the day while Harry is at school. I will still need to rest when my face is just too painful to keep upright and when I just feel exhausted from the medication and pain and I know I will still need to remove myself from the room to rest my head back on the bed. But I am hoping that anything I do to raise funds won't take me away from Harry and Sarah and I need to make myself a promise that I'll stick to that. The only time I'll compromise on this is when I'm awake through the night because of the level of pain and need something to distract me.

I am already thinking about some initiatives that could raise money and have some ideas and suggestions to put to other people and companies. I need to be patient, discuss the logistics with the Facial Pain Research Foundation and identify the best way forward. I know a few people who are hoping and planning to help and I believe we will work well as a team. I'm excited about what might happen but will share more when things are set up!

It Shows What a Little Persistence Can Do!

I've uploaded the Trigeminal Neuralgia awareness video onto a CNN iReport. As a result CNN contacted me and asked if I would upload my personal story. I was given 2 days to achieve this, but it isn't a story I was likely to forget! I just wanted it to be worded 'perfectly'. Never mind, it's a Virgo trait that I really don't like!

So by the following night I was ready to upload my story. After doing so I tentatively shared the link, thinking people might not think much of my work, my story, my feelings. It certainly leaves a person feeling vulnerable when they open themselves up. Writing my story was very cathartic. Uploading it and sharing it was very empowering and I was thrilled when it inspired others to do the same. People with rare chronic health conditions have been quiet for a long time. Suddenly we were seeing people giving a voice to their stories and it was amazing. I have no idea how many of the personal stories CNN intend to use. I know that mine and one other was verified very quickly, but others are still waiting to find out. CNN certainly intend to run a TN story closer to our First International Awareness Day, but as yet, I don't know what that will entail. 

One of the next things that started to happen was people sending requests to different tourist attractions, buildings or structures to see if they can light up in teal/blue on the awareness day. Of course I desperately wanted to rise to the challenge. From the 'comfort' of my own bed, dosed up on morphine, I decided to send a very honest e-mail to as many places as I could find. Gradually, one by one the replies started coming in. Each of them said no, for valid reasons, but they were all very disappointing. Then, I finally got a reply from the Lord Mayors Office in London saying they would agree to light up Trafalgar Square on the 7th October!

Toni was having great success, The Illumination Board for Niagara Falls have agreed to light up the Canadian side of the Falls. The Peace Bridge in Canada, the BC Stadium in Vancouver, the Zakim Bridge in Boston, The Mid Hudson Bridge in New York, The Ohio Terminal Towers USA, The Oamaru Opera House in New Zealand and The Miami Tower USA - SO FAR! Between us we've sent many, many requests. The most recent approval has come from the Gateshead Millennium Bridge, UK!

I am thrilled with how much we're achieving. It is really important that people remember we're a group of people who suffer with an awful, debilitating condition. I am proud of what I've achieved while laying in bed on my cocktail of medications. I'm now contacting the media as I really want the press to tell people why the fountains at Trafalgar Square have turned teal/blue. I've also contacted the national press, local news stations and national TV programmes. I really hope someone, somewhere, takes up our story.

In the meantime I have to keep pushing on. I'm exhausted and using so much of my energy on this. I know I'm hit a slump on October 8th but I'll deal with that then and I'll try and enjoy not feeling under pressure to make contact with people.

So many people have a new profile picture to wear on Facebook. They are sending it to their family and friends to wear for the day, to show support. I will send mine to a few people but I really don't think many will bother to wear it. I need to prepare myself for feeling that. In the meantime the change in the weather is making my face really painful and very uncomfortable. I don't know how to cope with it unless I try and make myself sleep for a few hours here and there. I'm tired of the pain and wish we were raising awareness of something 'nice'.

I have shared the link to my CNN iReport: http://ireport.cnn.com/docs/DOC-1029912

                                                         Image by Nikki Samuel

Busy, Resourceful, Hopeful, Sad - All In One Week.

It is surprising, that for someone with no 'life' that I've had a really busy week. I've been very resourceful and I think someone is finally hearing me. I've felt hopeful about the future treatment of TN. I've been so sad and upset with an appointment and by now, Friday, I'm emotionally 'done'.

The week started with lots of e-mails. I've been trying, as we get closer, to raise awareness of our awareness day! Hoping that the things that are starting to happen and the plans we're making are going to help me get someone to listen. I uploaded my TN video onto CNN and very quickly had a lot of comments and responses. To my surprise one of those came from a Producer at CNN. She said she'd watched the video and was very complimentary about the work I'd done. What she wanted was to know if I had breached any copyright issues with the music and images on the video and if I could tell them where I managed to get my informational quotes from. Thankfully, I only ever use images that are free to use and I had direct permission from Chris Conway to use his music. As I wrote the letter to the WHO I knew I'd only have used correct information and my sources were reliable. As well as this information they wanted me to write my story and upload it as another iReport on CNN. I spent most of Saturday working on all this information as the Producer asked if it was possible for me to have finished it by Monday 2nd September.

When Monday arrived the day started with me taking Harry to school. I haven't left the house in several months so I was anxious about it. Thankfully I didn't have to drive, Pete did that part for me! Unfortunately, even though I wore my scarf, the wind managed to catch my face and BAM! I was in pain. However I sent our several e-mails in attempts to try and get even one building, monument, tourist attraction or bridge in London to light up in teal/blue for the awareness day. It wasn't too long before I realised how difficult this was going to be. Just finding the person/department to contact was proving to be a difficult task. But I persevered and did manage to find a few contacts.

Tuesday arrived and despite being very 'hung over' from several doses of morphine the day/night before I was motivated to try and contact a few more companies, media, or buildings to ask for help. The rest of the day was a disaster and I had to rest. I'm so grateful to my Mum for taking care of Harry while I was sleeping. Sarah was at her Parents for a few days. I also received a phone call from Michael Pasternak from the Facial Pain Research Foundation. What an amazing, inspirational, supportive man. I feel proud and privileged that he took 90 minutes out of his day to call me!

On Wednesday I woke up with a determined motivation. I was getting tired of responses that said they couldn't or wouldn't be able to help. I also had my story approved by CNN and they told me they were definitely doing a TN story. They also asked if I knew a few more people who would be happy to upload their personal TN story. Those people came to mind immediately and after a couple of quick phone calls that was sorted. But my frustration with everyone I had contacted in London continued. After thinking of who else I could contact, I believed I had the perfect idea. Instead of trying all the different individuals, companies, tourist attractions etc I decided to contact the Lord Mayor of London (Boris Johnson). Assuming he manages to get to my e-mail in time I hope he can help. After several more e-mails and contact forms I had to call it a day. So far I'd done a lot in 3 days from my bed, dosed up on medication. I was pleased with how much I'd done and although the CNN story is positive, I haven't actually achieved anything else...YET! Sarah also came home today...YaY!

Thursday came and I had my last follow up appointment with my Neurosurgeon. I had expected and prepared myself to go in there and be told there was nothing more he could do and that unfortunately the MVD had been unsuccessful. I never learn. I always try and prepare for what an appointment will bring, but I'm usually wrong. On Thursday I was very wrong. I don't want to elaborate, there seems little point. But what I now know is that I have a lot more knowledge of facial pain disorders than the person who opened up my head and drilled into my brain. Hindsight is a wonderful thing.

It's Friday today and I've had very little sleep. I'm very emotional and tearful after my appointment yesterday and I'm going to plod along until lunch time, when I can take my next dose of medications and then, maybe, I'll manage to sleep.

A roller coaster week which I'm pleased is almost over. Harry is struggling to adjust to being back at school so we've found it difficult getting him there every morning. He'll also be very pleased it's Friday. I welcome the weekend and the chance to rest my head. I've found this week, that I've been able to speak honestly and candidly to everyone who I've come into contact with. It has to be the best approach. If honesty doesn't get you anywhere, nothing else will. Anything achieved by telling an untruth or exaggerating the truth will never be something that makes you happy or proud.

                                                  Image by Nikki Samuel

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

TN and ATN - How Everyone is Different

I knew before my MVD that I had Atypical Trigeminal Neuralgia (ATN) sometimes referred to as Type 2 TN as well as Trigeminal Neuralgia (TN) usually referred to as Classic or Type 1 TN. They are very different things, ATN does not, usually, respond to an MVD surgery. However, it can help classic or type 1 TN. The medications used are usually the same for both, but there are some very significant differences.

ATN is a constant aching, drilling, throbbing, debilitating pain that NEVER goes away. It is present 24/7 but can vary in intensity at any point during the day. There are no pain free hours or pain free days, there is just PAIN.

Add to that the sudden, uninvited zaps that can be triggered by the slightest movement or the wrong environment and those zaps can keep going for seconds, minutes, hours or even days.

Life with TN or facial pain is different for everyone. They can be very well managed on medication and able to function at times, enabling them to work, socialise or simply make it to the shops. However, they continue to have flare ups with periods of dreadful uncontrolled pain, but it passes and they can continue living, but, with the fear that it WILL all happen again. Obviously there are many variations, but most are coping with multiple medications, the side effects, the impact on their lives and let's not forget, the pain! 

Others have severe, unmanaged pain that is constant and prevents them from functioning and having any quality of life, simply existing on a cocktail of medication and desperately trying to cope with environmental and physical triggers, but separated and secluded in many ways from society. This description is how it feels when you have TN and ATN. You may get a 'better' day, but that day will still consist of varying degrees of pain.
Of course there will always be variations, but life with TN is always dictated by pain or the various side effects of medications and treatments. Those 2 things are something all TN sufferers have in common, with the exception of the few who are unable to take medications due to allergies or serious side effects.

I asked other TN/ATN sufferers to describe their pain, life, environment, side effects (or anything else they choose) in one or two words. Here are a list of the answers I was given.

- Debilitating - Insufferable - Overwhelming - Prisoner - Unstoppable - Desperation - Hopelessness - Misery - Anguish - Unbearable - Relentless - Draining - Incapacitating - Continuous - Life changing - Hell - Excruciating - Challenging - Nobody understands - Shocking - Lonely - Invisible horrible pain - Nightmare - Agonising - Never ending
- Tormenting - Affliction - Punishing - Painful - Icepick jabbed in the forehead  -Constant - Unspeakable - Hellacious - Horrendous - Courage - Cruel - Homicidal - Evil - Torture - Possessed - Disorientating - Mind-blasting - Faith-testing - Suicidal - Limbo - Fear

I then asked TN sufferers if their pain was manageable, well managed or not managed very well or at all. These are some of the answers I was given. Names have not been included as I informed everyone that their answers would be anonymous.

• My pain isn't well managed at all despite taking Lyrica, Nortriptyline, Tramadol, Co-codamol, Clonazepam, Oramorph (for breakthrough), Meditation, Reiki, Crystal therapy and Relaxation. I've also had a failed MVD that has caused AD (Anesthesia Dolorosa) which cannot be treated. I have tried psychological input and acupuncture. I wear a snood, even in the Summer so I can cover as much of my face as possible and protect it from the elements. I try to avoid as much movement as possible because the pain escalates very quickly and then nothing but time will help.

• My pain is NOT managed well despite taking Gabapentin, Carbamezapine, Morphine, Baclofen, Toradol and Trazodone. I also had a failed Gamma Knife and a failed Rhizotomy. I am not a candidate for MVD due to previous interventions. I currently see my Neurologist for additional pain shots when necessary and I get Chiropractic massage and lazer treatment with heavy concentration on my neck and shoulders on my TN side. 

• Nothing controls my pain, I hurt everyday all day. I take a million pills a day and none of them help any more. My Momma has taken me for acupuncture. She had creams made for me and lots of surgeries....nothings helps.

• My pain is intermittently managed with Gabapentin. I try to calm the pain with a heating pad, and attempting to distract myself with my iPod or by going on line (until the pain is so intense that I can't deal with distraction).

• My pain is not well managed at all! I am on Neurotin and Hydrocodone and Oxycodone! I also use a TENS machine sometimes! It just depends on how bad it is!

• I think its managed with very high dose of Gabapentin and other meds I can't remember but they just have me believing the TN is under control ... It's certainly attacks whenever it wants to despite my meds x

• Hi Nikki Im one of the lucky ones my ATN is well managed on Lyrica and Metoprolol Tartrate. I've had a period of being symptom free which was brilliant. Haven't done any alternatives but found eating healthy, weight loss and exercise when able has helped feel more positive for the future ...never give up hope x

• My pain is fairly well managed at present: I am on Topiramate with Amitriptyline at night. I also take magnesium, calcium, vitamin B12, and zinc, Tramadol and Dihydrocodeine - both on stand-by if needed. The spikes are lessened to a fairly low level - but still can be felt, and I still can feel the the triggers and the TN responds to changes in weather pressure and so on. All this does is lower the degree - not remove. I also use my wheatie - heat pad zoomed up in the micro, drink loads of herbal teas, try to avoid caffeine as much as possible - it seems to set my TN off - as it did my migraines some decades ago - very little alcohol - doesn't suit. Avoid cold, wind especially - wear a snood pulled right up over my face with only my eyes showing!! Every so often I have a neck/back massage with aroma oils - esp lavender - really helps. I try to keep as fit as possible - swim about 1 mile a day 5 days a week - can't do running/jogging - impact sets off TN!! Sorry for the long answer Nikki!! Oh - I do a wee bit of yoga - more or the meditation sort - nothing with head down! And balances are really very hard, but breathing and mind-set very helpful!

• Hi Nikki, mine is not managed well but I do have low pain days every so often. I take Carbamazapine,Gabapentin, Naproxen, Oramorph on stand by for bad days, Temazapam, vitamin B12 injections 3 monthly, folic acid and magnesium. I also have an alice band(material) which I wear across my forehead to avoid breeze lol x

• Amitriptyline works for me.

• Recently started amytriptiline again, headaches were horrendous to begin with, possibly breakthrough pain but seems to be calming down now, I take Co-codamol too. I dread winter, as cold wind gives me horrendous head pains. Stress can bring on the pain too, also have rhinitis so strong perfumes irritate my nose then triggering the nerve pain off too.

• Tegretol and no stress; my biggest trigger is fatigue.....so plenty of rest when I can.

• My pain is much better than without meds but it is also constant...always there! Heat helps sometimes. Sudden lightening jolts are managed, but now it is this burning that is sometimes so difficult to bear. On tegretol, baclofen, lyrica and nortryptilline, with dilaudid as needed. Meds leave me foggy and loopy but I will take that any day if it helps lessen the pain!

• Right now my pain is manageable. I am on Nortriptyline, Klonopine and Topamax. I am always at a 3. I have tried acupuncture and it helped a little. On bad days my pain gets up to a 10. I don't have pain meds. But I am going to a pain clinic next month.  I should add I do have to go to the ER at times when the pain gets really bad. When I do they give me Demerol, Toradol and Phenagren

• Never pain free and never below a 4, but would say pain is kind of manageable after stopping working... the daily challenge is to figure out how much can be done before pain gets to high (ATN/TN is just part of afflictions I have) ... some days I calculate with more pain the next day as I do activities that I know will raise it.... I'm allergic to anti seizure meds and opium derivatives so on no meds for the nerve pain... on Naltrexone 3,75 mg (LDN), Zopiclone to sleep, and allergy meds... and migraine tablets and regular painkillers (Paracetamol and Ibuprofen) when needed for other pain. Most effective for me is (sadly not to be able to work) deep breathing, some yoga and meditation.

• Hi hon, my pain is fairly well managed, I take lyrica and amitriptyline. Pain killers don't help but I have co-codamol. Heat is the most helpful thing for me, heated wheat bags and hot water bottles. I've tried other things but haven't included anything that isn't effective.

• Some days are managed while other days are unmanageable. I have tried Nuerontin, Carbitrol, Tegretol, Topamax, Nortriptyline, Lorazapam, many other meds including pain meds, acupunture, heating pads, yoga, exercise, rest, meditationI am only taking triliptel 3x daily pain hydrocodone twice day and lorazapam to sleep. My appt in in 2 weeks and he will load me back up again but sometime I just have to clean out my body

•  Tegretol is the only drug that works for me.

• Tegretol was the first one I tried and it worked unfortunately I was allergic to it which limits what I can take..currently taking lyrica 3 times a day which I need to increase from 400 total to 450. Also take Cymbalta.

•  Limiting ...either from pain or side effects from medications or lack of sleep.

• I am currently taking Oxcarbazepine and Tramadol. A "good" day for me (once or twice per week) is waking up to a level 3 pain and typically end the day at a level 6. Average day is waking at a level 3, having a few stabbing attacks throughout the day and ending with anywhere from a 6-8, depending on what other pain I have from my other issues. On very bad days, days when I'm also dealing with migraines, leg spasms from my MS, etc, it tends to set off the stabbing attacks of my TN even more, where I could have near constant stabbing for hours on end which of course raises the pain I have in between attacks. On those days I am just non-functional. I would say I have those "bad" days at least a week out of the months, not necessarily with the days being consecutive. So, to simply answer the question, I don't consider it to be as well managed as it should be.

• Managed with the help of Tegretol. Anxious, because I never know when th shock will come. The last one was drinking cold water. Lonely disease. If it gets bad like the last one, I have to have a Radiofrequency Lesioning again.

• I would say I'm managed as well as a person with AD can be - Klonopin, Morphine, Marinol, Dilaudid (for breakthrough, as needed), Robaxin & Tizanadine (muscle relaxants due to a total joint replacement I had in my jaw). I'm considering getting off the muscle relaxants & go with Botox. Stay on Marinol (this one really helps w the burning) & only use pain meds as needed. Although I tried to come down before & landed me in the hospital, my doc is very apprehensive. But I can't keep living in pain & still be taking meds!

• Not manageable I take Gabapentin, Tegretol, Cymbalta, Hydromorphone, Klonopin. I'm never without pain and it never is below a 5.

• Pain is not managed. I'm taking Gabapentin which makes me "weird" and off balance.

                                               Image by Nikki Samuel

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!

Each Moment

It still amazes me that pain, discomfort, mood and tolerance can alter within just a moment. I still find this surprises me and catches me off guard. My pain level has already varied several times today, from reasonably manageable to a burning sensation with ice picks being poked into my teeth, eye and ear. Inevitably this affects my mood and brings me down, never really getting the opportunity to recharge. My tolerance is something I watch lately. I see myself able to cope with general conversations and I think 'Yes, I can do this'. Then it alters, it builds up or suddenly there are the burning ice picks and I'm in a completely different place. I don't want to talk, I don't want to do anything, see anyone or even be awake. Today I'm aware that I have to take something to make me sleep. Otherwise I will go crazy, crazier than I already am! Plus, I start to think 'No, I can't do this' which is a very negative place to be.

I try not to talk to anyone about my fears, my health worries, my general concerns about what's going on. I know people worry about me, and I feel like they can't cope with anything else being thrown at them. It is my way of protecting them I think.

The last several months have been a difficult time. I don't need to go into more details about that, I don't want to revisit that over and over again. But I do notice things about myself that feel 'different'.

I need to talk about this with my doctor, though actually getting to the doctors surgery seems to be more difficult than you can imagine. If I'm awake all night, all I want to do is sleep. Then another day has past and we're onto another night of sleeplessness. I'm certain I have some insomnia problems, that aren't all due to pain, but also the things that still haunt me. But then a night can come along where, despite the pain and memories I sleep for a good 6 hours. Everyday might look and feel the same, but to be honest, it couldn't be further than the truth. My world can change in a matter of minutes and my ability to cope alters with it.

I need to do more positive thinking.

The Media

There is something to be said for contacting the media and having them tell your story. I did this to raise awareness, to help other people understand and to educate people who just don't realise what life is like with TN.

I've contacted lots of newspapers, not the TV yet, I'm waiting until we can actually buy the fantastic TN ribbons. It won't be long now...

So I've attached the link (at the side of the page) to my TN story that was released in the local newspaper last week. The actual article has a lot more information, including an interview with my surgeon and facts and statistics about TN, including the different types. I wish the whole article was available to see online.

So much work to do, but it is a very positive place to put my energy and if someone suffering with TN can't help with awareness, education and understanding, nobody can.

Short entry tonight. I think the emotion of last night and the tough day today have caught up with me.

Tomorrows a new day, a new dawn, it's a new life...

Inspiration

The lyrics from the song You're the Inspiration by Chicago keep going through my head today. 'You're the meaning in my life, you're the inspiration. You bring feeling to my life, you're the inspiration. I want to have you near me, I want to have you hear me saying, no one needs you more than I need you'. Yes, I know it's a love song, but at the moment the lyrics are how I feel about Harry. He is the meaning in my life, he is my inspiration for living and I do believe that nobody needs him more than I do.

Where we find purpose, wherever we find the reason to wake up in the morning, whoever keeps us strong enough to push forward each moment of each day, is our inspiration and is certainly the meaning to our lives. It doesn't belittle or dismiss other people in our lives, it doesn't mean we don't love them or feel a desire to push on because of them. But, with Harry, he's a young child, almost 7 and I can't leave him. Even in my darkest place I know I have to keep going so that I'm here for him. Everyday I tell myself that he doesn't need me and in fact, he has another Mummy who will meet any need that I would meet. But I try to reassure myself that my role in his life is unique. I have to convince myself that I am essential to his life.

The truth, certainly as I see or feel it, is he would be OK without me around. I offer no positive role model to him as I always hoped I would. I never leave the house and yet I always believed I would do all kinds of things if I was lucky enough to have a child. I would have been a role model to my child as my own Mum was/is to me. But what we believe we'll do or what we think will happen, can change in a heartbeat. So much hope for the future taken away in a second and nothing I (or anyone else) can do to change it.

I can't help feeling this has gone past the realms of depression. I look, anxiously at my box of medication and just wonder...how easy it would be to end this misery. Then I hear Harry laugh or see his little face and feel the huge amount of love in my heart and then I know, that even in this place, I have only one choice...to keep on hoping.

Outcome ~ to date

The densely numb sensation in my face is something I find hard to explain. The closest I can get is the feeling you get when you've had a local injection at the dentist. Your face feels swollen, you can't feel certain areas of your face and mouth and you feel as though you must look deformed. The mirror tells me my face is moving as it always did, but my mind tells me different (in fact I feel like I could be a ventriloquist)! Sadly the left side of my mouth/tongue/lips are numb which means I bite them really easily. I forever have bites on them and can never tell if food is trapped somewhere around my teeth because I can't feel it. My eye is numb too, I can actually touch my eyeball and feel nothing but I have artificial tear drops to help with lubrication and have to wear glasses if I leave the house. The surrounding area, eyelids, cheek, side of my nose, temple and scalp are the same, as is my chin. Imagine a burn, where the sensation is altered other than the constant burning. No matter how much you run your burn under the cold water, the burning remains the same. Each tiny temperature change does this to my face - both hot and cold - increases that burning sensation and discomfort. It is a painful feeling and reacts to those temperature changes. The cold makes the skin feel tighter, as though I'm wearing a mask that prevents my face from actually moving. The heat causes prickly sensations, which I feel before I realise my face is too close to the fire and burning hot. Any exposure to the varying temperatures outside give me increased pain and it is a pain I've not yet learned to deal with.

With physical pain we have medication, meditation, complementary therapies (crystals, reiki, acupuncture, reflexology etc) and at different times I have tried them all. Yet the burning dense numbness is a completely different pain. It is extreme discomfort which destroys any self esteem you might have. When talking to someone you're forever biting your tongue, stumbling over words and the dryness of the mouth just adds to the embarrassment! I realised very early on that nothing I did, or tried, or used to medicate, altered the numbness and the relevant pain it caused. I couldn't reach for morphine because it made no difference. Massage felt nice on one hand but made me more and more aware of what I couldn't feel when compared to the right side of my face. This has made the situation really hard to deal with.

I'm aware now that this will be a process. I still hope, 10 months on, that some sensation might return to certain areas of my face, but I'm also aware that the longer it carries on, the less chance I have of that happening. I have to try and find a way of living with my 'new' face, but I also have to allow myself time to process the outcome of the surgery and the extra problems it has caused.

The TN (I can't be sure if it's the typical or atypical TN pain) is still there. I know this because THAT particular pain feels familiar and does, to a degree, respond to the usual pain relieving techniques that I'm used to trying. On the worst days I reach for Oramorph, a very strong opiate that might only slightly mask the pain but causes me to stop caring as much. It also makes me drowsy, which is always a bonus when you're in pain!

As a result of the MVD I continue to have TN pain that is constant although variable, it can resemble raging toothache that covers a large area or a dull ache that occasionally zaps across my cheek. But now I have the pain and discomfort of the numbness. At this moment nothing will ever be the same for me. I will never smile and feel comfortable, never talk and feel relaxed, I can't eat in front of people because I always dribble something and don't realise it, I can't imagine kissing someone and loving every moment because that sensation has gone. I can't breathe through my left nostril because the heavy, dragging sensation feels as though it's pulling it down and blocking it. As yet I haven't found out if that is a result of the MVD or from a wide bore naso-gastric tube that I had while in hospital that may have caused some damage. Either could be causing me problems, but I can't face pursuing that as yet. I've had my left side front teeth looked at as they are causing me some severe pain. The slightest touch with my tongue feels like someone is sticking needles up into those front 3 teeth on the left. I don't know if I've damaged them from constantly trying to pull the intubation tube out while in ITU or if they are responding to the altered sensation. I wonder if they are irritated from my top lip which can feel 'fuzzy' at times or if they are indeed damaged. My dentist did x-ray them but couldn't see any hair line fracture, but when I saw the Maxilofacial doctor he said he could see a crack in my front tooth with his naked eye.

It is hard to know what to believe yet. I don't have the finances to have a front crown and I don't even know if I need one.