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