Trigeminal Neuralgia Hell.

Unfortunately, I have no good news. I have seen both my Neurosurgeon and Radiologist in the past couple of weeks, and more radiation off the table. My Neurosurgeon was so nice. He is a gentleman and he was completely straight with me. No bullshit. He told me that I may never find any solutions, and I have to make peace with that. I couldn't be angry with him, because I could see the empathy and sincerity on his face. I guess a successful treatment is not in my immediate future. 

I was very deflated coming home from the hospital. A small part of me hoped that my doctors were going to come up with something that will definitely help me. Trigeminal Neuralgia is hell, and it is so tricky to treat. It could take years!! 

At the moment, my pain is off the charts. My left side is between 8-10/10 and my right is between 6-9/10. Both sides are constantly painful, but the pain is more intense in my left side. It is unnerving how painful the right side has become since Christmas. It is slowly getting worse and worse. It is so hard to cope now. 

Simple activities that most people take for granted is virtual impossible for me now. I hate brushing my hair, washing my face and cleaning my teeth. It leaves me with intense zaps and burning pain, and sometimes it makes me cry. Imagine the tears falling down your face when you have TN. It is like acid trickling down your face with constant stabbing pain. It sucks.

The weather is great now, except for the fecking wind. The sun shines, although it's still cold. I could cope with that, wrapping myself up like an onion. The wind is a no go. I can't go outside, and if I do it's just inviting a 10/10 pain level for a day or two. 

My mood has been dark, there are other factors that are contributing to my well-being too, and I can tell you, I am at breaking point. Trying to keep a smile on my face for those around me is exhausting, and I just can't do it anymore. I have a great circle of people around me who try their best to understand. They don't, and it's not their fault, so I don't blame them. I am encouraged to get out and about, as if that will make a difference. 

When you have serious pain, especially Trigeminal Neuralgia pain, there is nothing anyone can do to make it better. That must be so upsetting and frustrating to our families and friends. 

I am also slowly coming off Tegretol. My Pain Specialist wants me to come off it and start on another drug. I reckon that my pain is so much worse lately due to the Tegretol leaving my system. I am going to my GP, and I will tell him I am going back onto my regular dose of Tegretol. I have called and emailed my Pain Specialist's office, asking for a cancellation. 

So much is happening now, and most of it just sucks. We have to keep going though. Don't we? 

Trying To Be Positive

I was so freaking angry the other day. Living with Trigeminal Neuralgia is a life sentence, and all that there is every day is pain. Now I am trying to be a little more positive, so here it goes....

I got to see my Neurologist yesterday, well I actually met one of his registrars. She began by asking me stupid questions that were already in my file. I asked her to read through it, I was in too much pain to talk. She took a few minutes, and then she wanted to do an exam. She asked me to do the usual stuff, like smile, frown, blink, raise my arms and legs while she pushed down on them. She was fascinated with my eyes. My right pupil never contracts, it's called a Homes Aides Pupil, and it was the end result of an illness a few years ago. 

She kept shining her light into my eyes, announcing that she can't see any reason why I can't see normally out of my left eye. The light pissed me off, because it set off a terrible attack. She simply stared at me while I cried out, trying to breath and fight it back. After about ten minutes of her just standing there watching me, I motioned for her to continue. 

I got the usual story..."complicated case....surgery is dangerous....atypical symptoms.....etc" In fairness to her, I don't think she saw a case of Trigeminal Neuralgia before, and she was quite nice. She wasn't condescending and she allowed me time to recover from the attack. 

I am being referred to another specialist that deals with more Atypical cases. Now, I was told this months ago, but I found out today that he was on a month's holiday, so everyone has to wait. He is the only Neurologist in Ireland that has the skills and knowledge for difficult cases. She promised me that she will do her best for me. 

I left the office sore, but a little relieved. There seems to be a plan for me. Some of my meds have been increased, and I am on the fast track to see this "miracle worker." 

I also went to see my GP today, who is awesome. He snorted derisively when he heard the term "complicated case". He said that every single Trigeminal Neuralgia case is complicated. He is continuing to send weekly letters on my behalf and it's a relief that he understands. I also have a wonderful TN family that have been so amazing, and things seem brighter. My pain is still horrendous but I don't feel alone. 

My back is another issue that is annoying me. My GP thinks it's sciatica, and plenty of rest and light exercise with some pain killers will do the trick. He gave me more information in 2 minutes than the idiots in hospital did in 7 hours.

So now I have to wait, try and rest, avoid triggering attacks even though I am in pain all of the time. 

I am a member of a TN group that are working hard to raise awareness, and we are getting there. It's amazing how some understanding, kind words and positivity has given me a much needed boost in confidence, and I feel like I have purpose again. 

Saying goodbye to my old life and embracing my new one is hard, and it's a struggle that I will win. 

Trigeminal Neuralgia Awareness Day is October 7th!!! Please support us by wearing TEAL!! 

Trigeminal Neuralgia Support

Trigeminal Neuralgia is an absolute nightmare. It has invaded every single part of my life, and it continuing to chip away at my soul. 

I am in pain constantly, 24/7 without a break. I never get a full night sleep, and it's even taking control of my dreams. I can't remember what life was like before TN hit. It's a long distant memory, and rather than it being my own recollection, it's like I have read a book about someone else. 

I am not the only one. 

That thought is frightening and comforting at the same time. I hate the thoughts of another person having to deal with this condition, but knowing that I am not alone helps. It's a paradox. 

There are some fabulous support groups out there. The people in them know exactly how I feel, they feel it too. Some people have suffered longer and they are in more pain than I am, and for my sake and theirs, there needs to be a cure. Sometimes surgeries can help, but that option is not available to every TN sufferer. Sometimes these surgeries make matters worse. 

The International Trigeminal Neuralgia Awareness Day is approaching quickly (Oct 7th) and we need to get the word out. Awareness not only helps regarding a cure, but it will help people understand. 

Anyone living with a so called "invisible illness" has the same story to tell. People find it hard to understand and there are even people that don't believe us.

I am a firm believer that if someone doesn't add anything to your life, but leeches every bit of joy and happiness from it, these people need to be cut off. Cut them off at the roots. Life is too damn hard with such people in it. It doesn't matter if these people have been your friend since childhood, cut them off. 

If you have Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, any other facial pain condition there are amazing caring people out there that always have a kind word, a reassuring presence and some good advice when things are hard. I have reached out, and I consider myself lucky because my family are a great support. 

Don't suffer alone, and don't suffer in silence. If the pain gets too much, go to the closest A&E/ER Department, but go with a thick skin. Many of the doctors and nurses haven't got a clue what TN is, so take some time to explain it to them if you can. I have a sheet of paper in my purse that explains briefly what Trigeminal Neuralgia is, what medications I am on, my GP, my Neurologist, and my next of kin. Do not let them label TN as a "headache," it happened to me before and it has happened to many others.

Another thing needs to be said. Only take the medication that is prescribed.  Don't take more than the stated dose, and don't take anyone else's pills. If the meds mess with your memory, a notebook is handy to keep close, even post-it notes are worth a shot. The TN community have lost a few people to accidental overdoses over the past couple of months, and it's a trend that needs to STOP.

Despite the pain, there is always hope. How far has society come in the past five years alone??There is more technology in your smartphone than in the Apollo 11 spacecraft that landed on the moon.. so there is hope for a cure. We need to speak out, inform people and educate those around us about facial pain. 

Contact me if you want some information about support groups, I will be happy to help. 

Trigeminal Neuralgia Vision Issues!!

For the last few weeks I have had major eye problems. One of the reasons I went to hospital was because I lost the vision in my left eye during a very bad attack When I say very bad, I mean that it was a 10/10. I was so scared, so scared that I was going blind! After some time in A&E and after I was admitted into hospital, I was sent to see an eye specialist there. The vision returned, but it is extremely blurry and I have permanent black spot there. 

There is nothing wrong with my eyes, but according to the Neurologist, the nerves at the back of my eye are under pressure due to the Trigeminal Neuralgia pain. So my Neuro was confident that once my pain was "managed" my eye vision would return to normal. So three weeks later, my vision is still blurry. Not only that, my pain is in the extreme and I cannot understand how I am staying sane. The meds are not working so far, and I am beginning to lose faith in my Neuro doctors. They all keep saying that I have to wait for the medication to start working, well it's been weeks and despite increasing the dosages, there is no change on the pain.

I am trying to remain optimistic, and keeping busy but it's not working so well any more. I am really worried about my vision. Living with this constant hellish pain is bad enough, but having problems with my sight is going to tip me over the edge. I have been on to my consultants and apparently their secretaries are doing their best to get me seen ASAP.

I am curious to find out how many people with Trigeminal Neuralgia, or in my case Atypical Trigeminal Neuralgia have this problem? I have tried looking it up, and rather than reading the medical side of it, people's own experiences would be informative and reassuring. 

I have also been told that I would be seeing a specialist regarding migraines and cluster headaches, but yep, still waiting. Maybe that is the source of my vision problems? 
  

TN Ireland

Irish Independent Interview - TN

http://www.independent.ie/life/health-wellbeing/health-features/tn-the-disorder-that-sends-a-shocklike-pain-along-the-nerve-30372993.html

Remaining Sane Through The Pain

I have been out of hospital a few days now, and it is seriously awesome to be home. It is just so hard to deal with the pain. Sleep is evading me. I cannot get any rest. Every little task is a struggle. For example, I decided to dust and hoover my bedroom. (No idea how it got so dusty, it was vacant for two weeks). Anyway, after I cleaned a little, I was so exhausted and in so much pain that I had to go lie down. I could barely see, my left arm was completely numb and the pain was excruciating.

My doctors always ask me to rate my pain from 0 to 10. 0 being pain free, and 10 being the worst pain ever. At the moment, my pain level is a 9. Yep, a 9. It is really unfair, and I am struggling to cope.

I was asked a simple question today, and it has been on my mind. Someone I know asked me how was I not driven mad by this pain. I just answered by saying that I didn't know. How am I retaining my sanity though? How are all the Trigeminal Neuralgia sufferers coping with this monster? It would be really interesting to hear other warriors' tales of woe.

I have been ordered to get a lot of rest, my doctors wanted me on complete bed rest, but that isn't possible. Things need to be done, and I go nuts if I sit still for long. I am really independent, and the fact that I can't drive until my vision returns is pissing me off.

Why is this happening to me?


I have filled in my prescriptions and even though my meds have been increased, I am still waiting for my pain to lessen. Remaining upbeat and positive is almost as hard as dealing with the pain. All I want to do is curl up and sleep until the pain goes away.

That would be surrendering though, and I am far to stubborn for that.

My plan for the next few days is to do nothing. Watch a bit of TV, try and read a little and generally keep my mind busy. This will last until the end of the week if I am lucky and I will want to bash my head against a wall. (I have actually considered this during a level 10 attack.) I used to devour books, I could read a 500 page book in less than two hours, now with my wonky vision, I can maybe read 50 pages a day, and that bugs me. Another thing Trigeminal Neuralgia has stolen from me.

What else will TN take from me?

Free from Hospital, still a Prisoner to Pain

I was discharged from Beaumont yesterday. I have been referred to a new neurologist and pain specialist. When this was explained to me I was quite confused, and I thought for a few moments that I was being fobbed off. A doctor explained this to me and now it makes sense. My current and soon to be former neurologist has carried out every test to give me a firm diagnosis and rule out any of the nasty illnesses and disorders that involve the brain. 

I have been diagnosed now with Atypical Trigeminal Neuralgia and Neuropathic Facial Pain, and my new neurologist specialises in this. I will also be seeing a pain management doctor again. I reckon I have a very long path to go down, but at least this is a start.

I have had a nerve block last Thursday that failed. I was so upset, the way some of my doctors were talking this would temporarily take away my pain. I woke up from sedation, felt the burning and stabbing pain, and cried my eyes out. The nerve block made my pain worse, it felt like someone had bashed me across the face with a hammer. My entire left side of my face was swollen, and I looked like death warmed up. The nerve block was partly diagnostic. If I had typical Trigeminal Neuralgia, chances are the block would have had some effect. My doctors were fairly certain of this and the failed procedure confirmed it. 

I am disappointed and saddened that my pain is still as bad as before. I have been given more medications and the dosages have been tripled. Hopefully this will have some effect until I can see my new doctors. Unfortunately these tablets have unsavory side effects. Memory loss, confusion, and bad coordination are just a few. The vision in my left eye is still blurry and my left arm is still numb with the occasional pins and needles sensation. 

So what do I do now? The sad truth is that I am capable of very little. I am so weak, in so much pain, that everyday small tasks are a major battle. Anyone with chronic pain understands this, but everyone else can't possibly. 

I know that my time in Beaumont wasn't in vain. There is a solid plan in action to reduce my pain, it just takes time. 

Consistant Agony

There has been no respite in this pain. It has been a few weeks since I fought off a cold, and either my tolerance is waning, or this pain is crossing a new threshold. I am seriously pissed off. I have another two weeks to go before I get to see my consultant again. Two LONG weeks with Trigeminal Neuralgia hell.

My doctor told me to go to hospital if the pain gets too much, but the thoughts of going to the A and E Department tends to bring on a panic attack! I can't go back there, and I am hoping that the consultant has a new plan to deal with this monster.

Pain has had such a negative effect on my life. I think fear, and the fear of more pain is nearly worse. When my attacks get bad, I try and focus, breathe and remember that it will pass. Thinking coherently is really difficult, the pain overwhelms both the mind and the body. Techniques that I have used in the past don't work anymore. I have so many more triggers now too. the slightest breeze or the softest touch are pure torture. It's like I am being burned from the inside out.

I am close to my breaking point. Sleep evades me, and I am surviving on a serious amount of coffee.

Is this anyway to live?

It is 2014, the technology out there is scary. We can send missions to Mars, dive to the deepest depths of the ocean, clone animals and humans as well as all the freaky stuff that can be done that's been kept secret. Why can there be no definitive cure for neurological pain? Tablets only do so much. The side effects are sometimes worse.

Understanding

What would we do without a support system? I know that I would be completely lost, and without hope. I have a terrific family who really look after me.


I have been active in many support groups online and there is one thing that caught my attention. Trigeminal Neuralgia warriors are finding it so difficult to describe the pain to family and friends, and they feel bereft and slightly betrayed.  


Invisible pain, whether it's TN or any other beastly condition, is impossible to describe accurately. As I have stated before, when you see someone with a visible wound, eg a broken leg, it is so easy to empathise with them. When our pain is internal, nobody can possibly understand.


Fellow TN warriors, think back to the wonderful time that you were pain free. Now imagine that your best friend told you they were in chronic and relentless pain. Would you fully understand? I believe that unless you suffer from pain, you cannot appreciate how life changing it can be.


If you also find that family and friends tend to lose their patience, cut them a bit of slack. They love and care about you, they do understand on some level. Part of your loved ones frustration is helplessness. They cannot bear to see you in pain, but they are powerless to stop it.

I always believe that you should surround yourself with good people that care. One great friend is better than ten acquaintances.


So go easy on family and friends. I know for a fact that TN can change people too. I am Queen Bitch some days. I don't mean to be, but it's hard to smile, laugh and be happy when there are demons dancing under my skin.

If there is anyone out there with a story to tell about their wonderful support system, feel free to contact me. I want to compile a section where we can tell our stories to help each other.

Have a low pain day!

Pain Nightmare

Do you know what? Living with Trigeminal Neuralgia is a nightmare. Every moment of my life over the past few weeks has been completely overruled by pain, and the pain levels are becoming too much to bear.

I also have a new symptom which is fucking fantastic. Yep, loosing the vision in my left eye for a few seconds at a time. It is frightening, and I am worried. My doctor insists that if it happens again I am to go STRAIGHT to Beaumont, as there are a variety of things that can also cause it.

Seriously, hospital? Not likely. Does anyone understand the state of the Irish hospitals?

Let me explain.

Sitting in A and E for roughly eight to twelve hours, then I am normally admitted (lucky me). Once admitted, routine blood tests and a variety of other tests are done, and then you are sent to sit on a chair. Yes, you heard me, A CHAIR. Let me tell you, if you have spent the night in excruciating pain, sitting in a chair, a trolley is luxurious. Oh and by the way, this is inside the A and E department, and there is NO PRIVACY either. My last time in hospital, I was in A and E for two days before being sent to a ward. Once I got to a ward, I received excellent care, and my neurology doctors were great. The nurses in the A and E department were great too, but severely understaffed.

So after my experiences I am extremely hesitant to go to the hospital, but if I really feel like something isn't right I will have to.

This is just one more thing to stress about. When you suffer from trigeminal neuralgia and chronic pain, more stress is the last thing that is needed. Stress and worry are major triggers for me, so it is a vicious circle.

I am, at this moment hoping for some pain relief. (Meds still are useless) I have read about remission and I am trying to imagine a few hours without pain. Seems like a dream.

Side Effects

There are certain medications that have been documented as having a huge impact on the pain of Trigeminal Neuralgia. As no two people with TN have the very same symptoms, medications will effect everyone differently.

I have tried lots of different ones. Tegretol was the worst. I did notice some improvement with pain, but the side effects were ridiculous. I started off on a fairly low dose, but it did not agree with me. My GP informed me that it might take a few weeks for my body to adjust to Tegretol, but after two months the side effects were worse. I couldn't drive, I was always stumbling, my balance was gone, I was talking complete nonsense most of the time and my memory was bad, really bad. If I needed to drive somewhere, I couldn't take my tablets, or I had to wait about 3-4 hours after taking them to drive.

That is no way to live life.

I was taken of Tegretol and having already tried Lyrica and Baclofen(that made me collapse), my neurologist wanted to give Lyrica another try. As I have mentioned before, I have been on a very low dose and I am slowly increasing it. There is to date, NO DIFFERENCE in my pain. Over the counter and prescription painkillers have little effect on my Trigeminal Neuralgia pain, they make me sleepy so I don't take them. I am also afraid of becoming dependant on them.

Are the medications worth the side effects? There was a subtle difference on Tegretol, but my stupid body can't tolerate it, even in small doses.

My GP knows that I am sensitive to meds, and I highly am allergic to quite a few, so he is very reluctant to change my meds. I am STILL waiting for an appointment with the pain clinic in Beaumont Hospital so hopefully they will find a miracle drug for me.

TN Monster

Trigeminal Neuralgia is an absolute monstrous condition. The pain is refusing to abate, the burning won't cool and as for the stabbing? The pain is inhuman. It's almost like my body has been invaded by a supernatural entity and I am constantly fighting to regain control. That may sound like possession, but believe me it is what it feels like.

It is so easy to loose yourself in the pain, and I have been on the verge of that many times. Simple tasks like washing teeth, brushing hair and applying moisturiser hurts like hell and it starts off these demonic attacks. Everyone with TN knows about these triggers. There are many more, going outside can be overwhelming, especially if there is a breeze, even a light one.

Basics everyday activities can become impossible tasks if you allow them too. There are days when moping around in pj's seems like the only option, and I will honestly say that sometimes the pain gets so bad that getting out of bed can be a challenge.

We cannot let this beat us. It is the hardest possible thing to get out of bed some days, but we must try. Trigeminal Neuralgia is a condition, it doesn't define us.

One way that I cope is by thinking of these attacks as an invasion I must fight. I am too stubborn to let this monster win and defeat me. I know that Trigeminal Neuralgia will never leave me, but it might go away for a while.

Every time I wear make-up, do my hair and have the courage to leave the house, I take it as a small victory, and everyone with TN should! Today is one of those days. 

TN is a monster, and it can invade our bodies, but it sure as hell can't take our souls.

Don't Lose Hope!

The past few days have been really difficult. The pain completely overwhelmed me and I was very down. I felt panic, fear and so much stress that I was afraid for my sanity. The pain attacked frightened me so much I was seriously considering hospital. (And for anyone who knows the about overcrowding in Irish hospitals, this is a last resort). I broke and cried and that made my face burn even more! It was then I knew that I needed to take some deep breaths and try and calm down. It's difficult to think clearly when Trigeminal Neuralgia has you in it's grasp, especially when I was sleep deprived.

I reached out to some terrific support groups and the darkness that had swallowed me up started to wane. I have made some fantastic friends through these support groups and even someone sending a get well message mean so much to me.

When the pain gets intolerable and life feels completely hopeless, reach out. Sometimes finding support from people that KNOW what you are going through helps. I won't mention any names, you guys know who you are and I appreciate the kind words and positive energy so much.

My family are also fantastic, they always listen and do their best to support me. I would be lost without them.

When you suffer from the monster that is Trigeminal Neuralgia, there will be dark days. It's inevitable. My pain is still very bad today, but I'm not as down in the dumps anymore. Worrying about things and stressing out is a serious flaw, and it's something I need to work on to try and prevent anymore days of panic. I don't normally need a trigger for pain, but stress and worry is one of the main ones for me.

Thank goodness I feel a little better, I am hopeful again that I will get some relief soon. My excellent doctor is making arrangements to ensure I get an appointment with a Pain Clinic and he is ordering some more scans and tests for me.

When I sat down to write this post, and I realised how many people have my back, I was astonished and thankful. If you feel alone, think about everyone in your life that are helping you in some way. There are more than you think!

Dark Day

Today is a very bad day. This pain is threatening to take me to levels of complete insanity. Nothing brings relief, it's just never ending and to date, the most pain I have ever felt.

I am trying so hard to keep the darkness from taking over, it's not easy. I am trying to stay positive and fight! This Battle with Trigeminal Neuralgia is turning into a War. It seems to be something that I cannot win.

Jolts of excruciating, incapacitating pain overwhelm me every few minutes. There is a constant burning pain and my neck is in complete spasm. I have only had this since last July, and the prospect of months and years of this Hell is not acceptable.

I am not only in pain, I am in a state of anger! These medications that we with TN are prescribed, often don't work. (Mine certainly aren't) Getting to see a Neurologist is another problem, getting the proper scans and diagnosis is also a battle. I am lucky to have seen a Neurologist, and I may have to invade the A and E Department of the hospital if this pain doesn't relent. I know the pain won't go, but a little reprieve would be an amazing relief.

If I am being honest, I am really getting scared. The way the pain levels are increasing is both hard to handle and freaking me out. Anyone with chronic pain knows what I mean.

The hardest part? It's putting a smile on my face and trying to show the world that everything is ok. Twitching when an attack hits, often makes people stare. It's not their fault. Unless this pain is experienced it's impossible to understand or empathise with.

I hope that I can get through this new level of pain.

Sleep Demons

Will I have another night like last night? Yes, probably. When Trigeminal Neuralgia pain stops me from sleeping, I become a raging bitch. If I'm being honest, I can survive on about four to five hours sleep a night, I'm built that way. But to get NO SLEEP, things get serious.

Sleep is wonderful. It's necessary to keep your mind and body in tip top condition. It allows your body to heal and regenerate after the day's exertions. When that necessary healing power is taken away due to pain, everything seems hopeless.

Anyone with TN, knows that a bad night's sleep is not unusual, and with the cocktail of medications that most of us have to take, sleep is even more necessary. Some meds help you sleep, as in they knock you out! That isn't proper sleep though, and the next morning, I experienced "hangover" like side effects, but without the alcohol induced fun.

Lack of sleep also messes with your head. You become nervous, paranoid and I have even hallucinated. Some things do help me though. If I do an hour on the exercise bike, shower and go straight to bed, I am more inclined to sleep for a few hours. If I read a book, I will stay awake until that book is finished. (It's a flaw, I'm a book addict, so I never start a book at night.)

I have recently started Yoga, and it is truly fantastic. I was sceptical at first, because it seemed like ridiculously expensive stretching, but after watching a beginner DVD and copying some of the easy poses, I was wrecked, and amazingly relaxed. When the session ended and the very flexible lady on my TV screen advised to lie down and focus on breathing, I almost fell asleep.

I neglected my Yoga routine for the past few days and my sleep patterns are ridiculous, so I will try again, and see if it does the trick. Yoga doesn't take away my Trigeminal Neuralgia pain, but it helps me relax, focus on my breathing and it distracts me from the dancing fire ants in my face.

If you are like me and NEED a few hours sleep, try Yoga. Get a DVD, and attempt the so-called easy poses in the comfort of your own home. (I was lucky I did it at home, because I attempted a few poses and fell over, but my dog was my only audience and she doesn't judge.)

Has anyone any tips? Do you have your own sleep demons and what overcomes them?

Understanding the Pain

Cold windy weather is the ultimate enemy when you suffer from Trigeminal Neuralgia

Poets and novelists love to portray the beauty of a soft gently breeze, or a crisp, fresh and frosty spring morning. Well let me tell you, as a sufferer of Trigeminal Neuralgia, those soft breezes and frosty mornings are complete and utter hell. Every time the wind touches my face, I get a severe jolt of pain that makes me want to scream aloud. Going for a walk is completely out of the question, even going outside for a few minutes, takes some preparation.

Summer is on it's way, and hopefully the warmer weather will help my symptoms.

This post is more for the families and friends of TN sufferers. Trigeminal Neuralgia is such a debilitating condition, but because our pain rarely shows on the outside, it is difficult to understand. If someone has a broken arm or a leg, they get a cast on. Their pain is visible. TN is a neurological condition. The nerves jolt and spasm inside the head and it makes simple tasks like washing teeth, applying make-up and even washing hair difficult. A soft breeze to you, feels like millions of sharp knives stabbing the left side of my face, with the occasional electric shock to keep things interestingly nasty.

Just because someone's pain is seemingly invisible, does not make it any less. In fact, anyone with nerve pain will tell you the pain that you can't see is the worst. We all know that if you break a leg, it will hurt for a time, but it will heal. Nerve pain is not like that.

Don't judge someone on how they seem from the outside. Think about what it is like living in their bodies. Have some compassion, and if you don't understand their pain, a simple internet search will tell you all you need to know. I can tell you that I wouldn't wish this pain on my worst enemy.

It is difficult for families and friends of those afflicted with Trigeminal Neuralgia, as I know that they feel powerless. The best thing that you can do for someone living with chronic pain, is listen. That's all that's needed. Work, college and a normal life isn't always possible when  you live with chronic pain, so bear that in mind. When your friend tells you that they can't go to work or out for a drink because of pain, don't laugh it off and call them lazy. That is insensitive, insulting and completely untrue.

Fighting the Dark Days

There are so many dark days when you suffer from Trigeminal Neuralgia. There are days when you would do anything for a respite from the burning pain. It is so difficult to describe the pain. Some say it's like being stabbed in the ear with an ice pick, others say its like being burned. For me the It feels like there are hot coals underneath my skin. The pain radiates from by lower jaw to my ear and the entire left side of my face. I get sudden jolts of excruciating pain, which sometimes last for minutes. On a normal day I can get between 10 and 20 jolts. Medication may be helping, but it's still early days.

On these dark days, it is so important not to let Trigeminal Neuralgia beat you. When you wake up, make a decision. Do your make-up, hair and wear something pretty (if you are a guy reading this, just shower and shave, maybe put on a nice shirt etc)

I find that making a little effort helps keeps me sane and positive. My body does scream at me to stay wrapped up in bed, but I have to fight. Don't get me wrong, there are days when I let Trigeminal Neuralgia beat me. It's impossible to stay strong all the time. Do not let Trigeminal Neuralgia define you, it's a condition and it's serious, but try and maintain some sort of a life!

On a dark day, contact a support group. There are dozens on Facebook for example and I find them fantastic. There are people stuck in the same darkness and by helping each other, there is a light at the end of the tunnel.

Get The Correct Diagnosis!

When I received my Trigeminal Neuralgia diagnosis, I felt both relief and complete and utter horror all wrapped into one.

In one sense, I have a incurable condition that causes excruciating and constant pain. The other side of the coin is, well at least it's not fatal. Trigeminal Neuralgia won't kill me, it's not a degenerative disease and some surgeries and procedures can take away the pain for a while. On the whole, things could have been a hell of a lot worse.

I was tremendously lucky that I was diagnosed quickly. My GP knew straight away what I was suffering from and after speaking to some people with TN, I have found that it is quite rare for a GP to have such knowledge. Many people have had multiple teeth removed, been sent for several useless tests and sometimes they have even been told that the pain is "all in their head." I have heard of people that have waited over ten years for a clear diagnosis, while I barely waited ten minutes. It makes me wonder how people coped years ago, before TN was known about. Were sufferers deemed insane? Were they sent to institutions? It is called the suicides disease for a reason. Sufferers MUST get the care they need.

The moral of the story is this; if your doctor isn't sympathetic, knowledgeable, and willing to ensure that you receive the proper treatment and medication necessary, get a new one!
Remember, nobody knows your body better than you. You know when there is something wrong, and do not give up on getting a correct diagnosis! Go to an Accident and Emergency Department if the pain gets too bad!
Some dentists are also excellent at diagnosing TN, as early symptoms often present as a severe toothache.

Unfortunately in Ireland, there is a severe shortage of Neurologists and pain specialists, but with our abysmal health system that is hardly a surprise. Trigeminal Neuralgia is tough to diagnose, as it normally doesn't show up on scans, it's up to the doctor to listen to their patient and diagnose from the symptoms evident. It is also normal to be sent for CT scans and MRI scans to make sure there isn't anything more sinister going on, ie brain tumours.

Building up awareness will not only help sufferers of TN, but it will also force medical professionals to be more vigilant. Fortunately Trigeminal Neuralgia is quite rare, usually 4-5 in 100,000 people will be affected. Women over 50 are more prone to TN, but at 28 I am in the minority. TN can also affect teenagers and even children, so a correct diagnosis is essential.

The thoughts of a person suffering alone is abhorrent to me. There is plenty of support out there. Should anyone need links to support groups, let me know. There are plenty of great ones on Facebook and Google +.

Trigeminal Neuralgia Awareness!

The lack of awareness out there astounds me. People haven't a clue what Trigeminal Neuralgia is, they think it's no big deal. Someone the other day told me that she had neuralgia after getting a tooth extraction, and after a few days the pain went. Trying to explain what TN is can be a battle. People don't understand, because I look fine. I have no open wounds, no broken bones and o visible sign of pain. It is so frustrating!

The International Trigeminal Neuralgia Awareness Day is on October 7th this year. We need to spread the word about this condition. Please share this post, and I would welcome any suggestions about promoting awareness.
 
Television, radio and print media are options, and I intend on contacting several different programmes, stations and newspapers. If there is a celebrity out there with some understanding of Trigeminal Neuralgia, it would be awesome to get their support.

I would like if other people with TN would join me.