Too Much Pain

Things have not been great lately. The pain from the now bilateral Trigeminal Neuralgia is completely off the charts. It is so draining and soul destroying. 

As I said in a previous post, I am now off Tegretol, but I was put on Topamax. So now I take a delightful cocktail of Gabapentin, Baclofen, Amitriptyline, Veneflaxine, Topamax and Nepramel. I am on fairly high doses of all the medications which makes functioning like a "normal" person difficult. 

Lately, the pain has taken on a new intensity. I do believe that the cold weather is a major factor. It feels like thousands of tiny red hot knives stabbing me, over and over again. The shocks are also increasing and they literally take my breath away. As well as the Trigeminal Neuralgia pain, I have Migraines also. When these two conditions appear at the same time, it leaves me unable to get out of bed. For the past 5-6 weeks I have had a lot of joint pain. It feels like my joints are on fire, and cramping at the same time. I get frequent pins and needles in my arms, hands, legs and feet. I don't sleep, the pain is just too much. My doctor has a theory, but I want to wait and see if he is right or wrong. 

I am overcome with a lot of guilt. There are days that I am useless, I can hardly take care of myself. I hate being stuck in bed unable to move, I hate having to depend on my family to do things for me, I am 31 years old, not 91! I can't shake the feeling of hopelessness and overwhelming guilt. I feel like I am a burden, a leech, with nothing to add to society. Is this a common feeling among those with a Chronic Pain condition? I try so hard to make something of my life, to do something small each and every day, but light housework such as hoovering and washing dishes is a form of torture. 

Logically I know that it's not my fault, I know that I have limitations, but it doesn't mean I have to like it. I want to be able to spend quality time with my family. I want to go and have a small social life, even if it's meeting a friend for a coffee. I want to go back to work, to start contributing to society once again. 

If I am in so much pain now, and I mean that this pain is becoming too hard to cope with, what will the pain be like in the future? Will I be completely confined to my bed in 12 months? Will my doctors confirm that I have another condition to add to my impressive arsenal? Will I ever get back to work? Will I have a family of my own someday> 

So many questions, and they are impossible to answer. I just want my life back. I don't want another diagnosis, even though I believe that my GP is right about it unfortunately. 

I have to work on my feelings of inadequacy and guilt. Logically I know it's foolish, but I get a pain in my stomach when I look around me and realise just how useless I have become. Nobody has called me a burden, nobody has complained that I can't do much to help out anymore. It doesn't change the way I feel, and I wonder are there many of us out there/? Who else feels this way? How do i overcome it? 

Hour by Hour, Day by Day.

My Stereotactic Radiosurgery has failed. I know it can take some time, but I've given it enough time to work. I'm disappointed, and sadly my pain is worse than ever. 

On my left side, I have Atypical Trigeminal Neuralgia, but now I have pain on my right too. Unlike the left side, the pain comes and goes on my right, which means I have TN type 2 on my left and TN type 1 on my right. What are the chances that I would get this hellish condition on both sides? 

The past few days have been really tough and sleep has been practically non existent. Sometimes I grab a few hours sleep here and there, but I can't sleep now. The pain is just too extreme, I literally want to bang my head off the wall. Yesterday I wanted to rip my face off. It's a real worry too, my mood is getting darker and darker as the pain gets worse and worse. 

Finding the positives in life is difficult. I look around me and I see my cat and dog snoozing happily, and I envy them. Writing this is hard, I know what I want to say, but the bright screen is seriously hurting my eyes, sending sharp stabs down my face. If I didn't know how to type I would be in trouble. 

I have said this before and I will say it again. We need a cure. Living like this isn't right and it isn't fair. We are pumped full of medications, used as guinea pigs to see what, if any procedure will work, There has to be a universal solution, they can walk on the moon and dive to the deepest depths of the ocean, yet fixing us is not even on the World Health Organisation's list of priorities! The Light Up Teal campaign is well underway, and we will change that. 

Light Up Teal for TN - TNNME

Taking it hour by hour and day by day is how I survive and I am surprised my sanity is still intact. Will it be intact in a years time? How about 2 years?? 

Petition to the World Health Organisation - TNNME- Trigeminal Neuralgia Petition to the World Health Organisation, please sign and share. 

Panic Attacks and Chronic Pain

Overwhelming sadness is threatening to engulf me every moment of every day. 

Pain is ridiculous, and it is so powerful that it literally brings me to my knees. Trigeminal Neuralgia is nasty, and I wouldn't wish it on my worst enemy. The severity of my pain is impossible to express, but I only have this condition 2 years. What will the pain be like next year? Or the years to come?

The panic takes hold and I am paralysed for a while. I have pain all the time, but when a bad "attack" comes, I can sense it. The knowledge that horrific pain is only moments away is terrifying, and I am powerless to stop it! I am trying constantly to calm down a little, and meditation is working for me. I go to my bedroom and light a candle. I sit down on the floor and try and empty my mind which is a really hard thing to do. When I am in the midst of a really bad panic attack I focus on the animals on my wall. I have put up loads of pictures of my favourite animals, because I need something positive to focus on. My family are on another wall, and even if I am alone, I don't feel it. 

The panic that the pain brings is almost as bad as the pain itself, and it is something that is commonly overlooked. We are given a cocktail of medication to try and combat the pain, but what about our mental health? I am beating it, but it's a daily battle.

With all the work that I need to do to simply function, it's a wonder that I am able to get dressed in the morning. I have also learned to give myself a break. I was so hard on myself, I need to cut myself some slack. 

Panic attacks are no joke and they can be so debilitating. There are so many reasons for them and they cannot be overlooked or ignored. You can't "snap out of it," that is the worst thing to say to someone.  I am stubborn and I choose not to go and see someone about them yet, but if they get any worse I will. There is no shame in seeking help. We all need help sometimes, and that is another lesson I have learned. There are fantastic support groups out there to reach out to. 

Dealing with chronic pain is a full time job, and if our mental health is hurting, that is overtime without any pay or benefits. 

Light Up Teal

3 Diseases More Terrifying Than Ebola - Trigeminal Neuralgia is Listed!!

This video is a must watch. Trigeminal Neuralgia is listed as number 3!!

Stopping the Tears

Well, my eye sight is freaking me out again. Yep, the sight in my left eye is almost gone. The pain is seriously getting worse and worse. I wrote about my pain a while back, and it is even worse now. Trigeminal Neuralgia is a merciless bitch, and I am sick of it. 

I don't know how much pain my body can take. My eye sight is failing, and the question I have is this, what next? 

At the moment, I want to beat my head off my bedroom wall, I have seriously given it a lot of thought, it's not like my pain can get any worse, right??

Perhaps that is not the best idea, but honestly, the left side of my face is on fire. It is like someone is dipping me into a huge furnace, face first. Of course, the burning isn't enough, but every minute or so, I get a shock so bad that I almost yell out. Bolts of lightning are seriously going off in my head. The stabbing in my ear and the vice like pressure in my head in enough to make me crumble. Don't get me started on my teeth...

Crying makes everything 10 times worse, the tears feel like lava flowing down my face and the pressure in my head increases. It's a serious struggle to stop the tears. 

But, my eyes. It is seriously scaring me. I got about 2 hours sleep last night, but when I was woken up, I almost couldn't see. It's frightening. 

What are my options? Go to hospital? 

Waste of fucking time. 

This entire condition has torn my life to shreds, and now, TN is continuing to  rip those shreds apart. Medications are seriously useless, only stupid and scary side effects have taken over. 

What am I supposed to do?? 

Ireland Lights Up for Trigeminal Neuralgia!

The Convention Centre, The Mansion House and The 3Arena looked fabulous in Dublin last night! It made me a little emotional today, as I realised that it really did happen! 

The group Trigeminal Neuralgia Ireland, is full of amazing people that are such an inspiration, and I hope that this campaign will bring hope to people that are in so much pain and darkness. With such an amazing first year, imagine what will happen next year!!

Here are some photo's of Dublin, I will post Waterford and Cobh soon!! 

The Convention Centre

The Mansion House, residence of the Lord Mayor of Dublin

The 3Arena

Ireland is Lighting up Teal!!

Mascara Madness!

Why does a single layer of mascara simulate a punch in the face?

Putting on make up while suffering from Trigeminal Neuralgia isn't easy. As a matter of fact, simple grooming is torture. Some days my pain is tolerable, and on those days I put on my face and try and get things done, but as time goes by these "good" days are becoming quite rare. 

So I was in a lot of pain a few days ago, but I had to run errands. I decided to forego my usual make up routine and opt for a little mascara and lip gloss. I swept the mascara wand over my lashes and it felt like I was punched in the face. I was brought to my knees and I was convinced that when I looked into the mirror I would have a bruise. 

Nope, no bruise.

Dealing with this "invisible illness" is not easy, especially when such pain rips apart your insides and leaves no trace on the outside. With me though there is a slight trace. I have an enlarged pupil and when I am going through a particular bad attack, my pupil expands until my eye looks black. I think it's creepy. My face does swell also, and my left ear goes red, like it's been sunburned.

Would life be easier if what we feel could be visible to everyone else? I don't believe so, but this is why we need awareness.

I find that if I tell people I have "a neurological disorder" or "nerve pain in my head" they look at me differently. Do they think that I am going to keel over any second? Probably.

Trying to hide the pain by putting on make up, doing my hair and plastering a smile on my face is getting too hard to do. I can't even put on a layer of mascara on a bad day! Some women don't wear make up, but I always have and I don't like going anywhere without my war paint on.

So, I have to either go through agonising pain and look half decent, or forget it and look like crap everyday.

This may seem like a silly thing to worry about, but imagine things that you take for granted are taken away from you, without warning, and you have to go through unbearable pain instead. It's not nice.

On October 7th, landmarks around the globe are supporting us by Lighting up Teal for International Trigeminal Neuralgia Awareness Day. We need awareness, understanding and hopefully a cure. 

Trigeminal Neuralgia Awareness

Keep The Ribbon Going!!

Trigeminal Neuralgia Awareness
mytnbattle.blogspot.ie

TN Nightmare

I am so tired. I am exhausted actually. Trigeminal Neuralgia pain wakes me almost every night. The pain is so intense that I am afraid to move a muscle. 

Last night, I was awake until 3am, couldn't even think about sleep although I was wrecked. My face was on fire, it was swollen and when I looked into the mirror I got a fright. I looked awful, I have uneven pupils, one side of my face was swollen and I was trying my best not to cry. Crying makes the pain a lot worse. 

I eventually fell asleep, only to wake up at 5.30am with pain radiating down the left side of my body. It wasn't just my face, it was everywhere. I tried to stay calm and it took about twenty minutes for this to ease a little. I got out of bed and walked around my room for a while, just pacing trying to distract myself. 

I was told my a migraine nurse to refrain from taking painkillers as she thinks there is a migraine element to my pain, but I put my back out two weeks ago and it's still painful. I swallowed a couple and went downstairs. She doesn't have to cope with chronic pain, and it's so easy to give orders like this when sitting down and writing my life story down in bullet points. 

Everything seems so much worse at night, it's the silence I think. During the day there are so many distractions. Whether it's writing tonnes of emails, cleaning the house or talking to my sisters and friends, life seems that bit more bearable. Night time is complete and utter hell. I was always a night owl, even as a child, but waking up in so much pain is soul destroying. 

I know that there are support groups that I can reach out to at night, but it never came into my head. This is not the first time this has happened, and I know it's stupid not to call someone, but realistically what can anyone else do? I would just be worrying them unnecessarily. 

As I am writing this, the pain is sharp and burning. Medications I am taking are not doing their job, and it is really difficult to beat back the anger.  

Trigeminal Neuralgia Awareness Day!!!!

The International Trigeminal Neuralgia Awareness Day is approaching quickly!!! Please wear Teal to support this monstrous condition! 

October 7th 2014

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!! 

Another Hospital Horror Story

Seriously, what a week. Talking about pain! So as you all know, my Trigeminal Neuralgia pain is extreme, and lately it's either a 9/10 or a 10/10 on the pain scale. Completely unbearable. It makes life seem impossible, every single moment is utter hell. 

Last Thursday night, I met with a few people regarding the Irish TN group, and after the meeting my lower back was so sore, I put it down to the chair I was sitting on, and kept going. At 4.20 the next morning, I was in so much pain that I can't even describe it! My back had completely locked. I tried for two hours to get out of bed, and I couldn't. I eventually called for help, and at that point my mother had to call an ambulance. 

I will never forget it. My face was on fire, shock after shock took my breath away, and my back was so sore I couldn't move. I have a high pain threshold thanks to the TN, so that is saying something. When the paramedics arrived, they tried pulling me up, but I screamed in pain. Another plan was some sort of gas that is supposed to numb pain (can't remember the name). That didn't work at all, it made me feel sick. As they didn't have a spinal board, a Fire Brigade had to be called. 

Now I know that it is most woman's dream come true to have 2 paramedics and 6 firemen appear to the rescue, but I was fucking mortified, and I was in so much pain. My hair was wild, I had no bra on or makeup. 

 After a shot of morphine, they were shocked that it had no effect. They ended up pulling me up and guiding me to the ambulance. It was the most painful experience of my life! 

After a very handsome paramedic/fireman held my hand to hospital, I ended up on the flat of my back on a trolley for 7 hours. That evening, a neuro doctor came to see me, and she apologised that there was NO CONSULTANT/SPECIALIST in the hospital as it was a Friday evening. It was a complete disgrace. I got NO x-ray, NO pain relief, NO food or drink. I was told I could go home that evening, and I still couldn't move. 

I called my mother and sister and they came to get me, and they had to try and get me up. Not one medical personnel around even offered to help. After about half an hour, and a lot of tears, I was finally on my feet. I left that shit hole, and I swore to myself that I am not letting this go, and I am not. 

An emergency appointment was made to see a pain specialist last Monday, which was a complete waste of time. Even though it was my back that needed to be fixed, he refused to do anything until I saw my Neurologist. I was told to rest, like I could do anything else!

 An emergency appointment was made for tomorrow (Wednesday) morning. So I wonder if I will get any help. 

The Irish health system is an absolute horror story. Don't get me wrong, the nurses in A&E do the best they can, but they can only do so much, It is dangerously overcrowded and in a developed country like Ireland, it is abhorrent. 

So I missed a very important meeting last Saturday, and I missed out on going to a play tonight. I am angry, no I am fucking fuming. If I was given a little help last Friday, I may feel a lot better by now. 

As anyone with TN knows. stress and other pain can set it off and my face is worse than it's ever been. I feel like I have third degree burns, thousands of fire ants in my face, and I feel like my nerves have been attached to an electric fence, The vision in my left eye is all but gone, and the entire left side of my body is so sore, and that happens to be my TN side, so it's a bit freaky. 

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. 

Stress and New Symptoms

Stress.

That says it all. Stress is the root of all evil and it sets off my Trigeminal Neuralgia pain to extremely unbearable levels. Everyone has stuff in their lives that is stressful, and everyone has worries, whether it is family, money or work. 

So how can I try and relieve some of my stress? 

I have tried meditation, yoga and listening to some of my favourite rock music. None of it has worked. (Rock music chills me out, weird I know). I have even listened to some of my all time favourite pieces from Handel and Beethoven, but yet again, nope, still agitated and stressed out. 

The weather is fairly bad too, well in my opinion. It is dull with many rain showers, but the breeze, it cuts through me like razor blades. It is ridiculous to wear a scarf in August, but there you go. 

I am so sick and tired of the pain. It is wearing me down and I am queen bitch sometimes. I have pains and aches in every bone in my body, my legs feel heavy and my left arm is either numb or very sore. I am beginning to worry if there is more to my diagnosis, and yep that is stressing me out too. I have had a lot more "10 plus" attacks lately, and it terrible to say, that all sorts of messed up thoughts run through my mind. I have a great support network, so that is invaluable. I met these awesome people in a Facebook group, and they have literally saved my sanity. 

I am now afraid to see my GP, because as well as all of my other new symptoms, the vision in my left eye is almost completely gone. I know what he is going to say... back to hospital. I am not going back to that hell hole if I can help it, but if I don't tell my GP what is going on, will the symptoms get worse?

I had to add two new medications to my daily cocktail, perhaps they are the cause? I don't know what to do. 

Is Pain All That There Is?

Trigeminal Neuralgia pain is the worst I have ever felt in all my life. 

Sleep is difficult, talking hurts like hell and every single thing that I need to do on a daily basis is becoming increasingly difficult. Brushing my hair is hell, showering is pure torture and brushing my teeth feels like I am using a cheese grater inside my mouth instead of a toothbrush, Moisturising also hurts, and putting on make-up is nasty. 

I feel really self conscious without my war paint. I despise leaving the house without it. I know that it is a silly and some people would say stupid thing to worry about, but it is how I am. 

I just want some of this pain to ease. Just a little. I have daydreams often. In them, I am working, living my life and completely pain free. I would give almost anything for this. It is futile, and each day passes with extreme burning pain, electric shocks overwhelm me every couple of minutes and the stabbing sensation is never ending. 

I feel that I am loosing myself. I look into the mirror and my appearance has changed, there is a blank and glassy look in my uneven pupils, my skin is pale and the swollen black bags under my eyes make me look like I am much older than my 28 years. 

I also don't recognise the woman reflected back. I am miserable, and there isn't much in life that brings me joy, and I don't care about very much any more. I do try and put up a front, I paint my face, struggle to tame my hair and plaster a smile on my face. 

My medications make me feel drunk and stupid, and I am positive that my IQ has dropped 50 points since my diagnosis, which for me is torture. 

Sleep is certainly my nemesis of late. 

I wonder how long I can go without sleep? 2 or 3 hours a night is ridiculous. I have to keep hoping that one morning I will wake up, and my first thought or yelp isn't due to pain. I want my vision back, I need it back. I read a lot, and I love to drive. 

Will there ever be an escape from the pain? Is pain all that there is??

Greenock Telegraph Article on Trigeminal Neuralgia

http://www.greenocktelegraph.co.uk/news/greenock/articles/2014/07/23/504789-no-cure-for-greenock-woman-who-suffers-excruciating-pain/

An article about a young mum's struggle with Trigeminal Neuralgia

Living with Extreme Pain

Waking up on a beautiful morning like this one used to cause me joy. I love to see the sun out, a cloudless sky overhead and a cacophony of birds singing. But after two hours sleep, and trigeminal neuralgia pain, I barely even notice the weather. 

Sleep deprivation is beginning to take it's toll. I can notice it in myself that I have permanent bags under my eyes, I am extremely pale (and as I am a red head that gets a sunburn in five minutes, that is saying something.) I also have little or no energy. Constant pain is taking so much away from me. The burning never ceases, the stabbing pain feels like there is an ice-pick plunging into my left ear and all those shocks... they literally bring me to my knees. 

These aren't the only symptoms though. I have little vision in my left eye (still, after six weeks) and occasionally my left arm goes numb, then pain shoots up and down from my neck and shoulder to my fingers. The dexterity in my left hand is also poor and I am freaking out over it. This could be a part of the migraine element to my TN coming out to play. As my Trigeminal Neuralgia is type 2, I get no relief, no rest and no respite from this hell. 

I am living in hope that these medications I am taking religiously will start to ease this pain, but after a year the pain is getting increasingly worse. What I called a 10 a few weeks ago is now an 8, the new 10 has hit me like a sledgehammer, I didn't think my body could cope with this, and I don't know what I will do if the pain gets any worse. 

There is so much that I can't do any more, so many things that I used to enjoy that has little or no meaning to me now. Last year I read over 150 books, I devoured them, but with the loss of vision, low concentration and increasing pain, I find it hard to read as much. I still read, but occasionally, and I know I am missing out. The list could go on and on. 

I know there are people out there in a worse state that I am in, and I do have a lot to be grateful for. I have an amazing family, who do everything they can to help and support me. I also have also met some terrific people from a support group (links below).

Depression is something I am trying to fight. I have read a lot of how people cope the chronic pain, and depression comes hand in hand with pain sometimes. Accepting and making peace with the fact that I have this condition has helped. For the longest time, the impact was lost on me, but now I get it. There are things that I can't do at the moment, and that will change in the future (I hope). 

Despite everything that Trigeminal Neuralgia and facial pain can take from us, we have to keep hoping, keep fighting, and although there are days that the excruciating pain seems never-ending, there is a lot to be grateful for. I feel that I have become more understanding of people suffering pain, and although there are people around us that haven't a clue what TN is, they may be fighting their own battles. I know what it feels like to be alone and wallow in self pity, and there are days that it takes over, but every TN warrior needs to reach out to others, accept help and then give help in return. It isn't a vicious circle, it's a great one. 

I have discovered a TN group and the people are all awesome. I know that there are support groups around the globe, and I am also a member of some of these too. The people in these groups are so kind and caring and above all they understand the pain, the desperation and the anger like no one else. 

I know I am suffering from hellish pain and sleep deprivation on top of that, but I am not alone. My GP is also on my side, and that in itself is valuable. He knows everything about TN, and he understands the pain, the anger and the sadness. Having a good doctor is crucial, and if anyone reads this who are not happy with their current GP, it is easy to find another one. 

If the pain is beginning to take over, and the anger is beginning to boil over, reach out! If you aren't on Facebook, contact me and if I can help I will, and if I cannot help I will point you in the right direction. I have this monster for a year, and I learn new things about it every day.

 It is so rare, correct information is so sparse, and that has prompted us at the Trigeminal Neuralgia Ireland Support Group to set up a webpage, fight to light buildings up teal for the International Trigeminal Neuralgia Awareness Day on October 7th, and we have also fought and won to get noticed in the media!! There was an Irish Independent article featuring some of our group members discussing TN! It's a small step to awareness, but right now it's momentous. 

Some crucial links:

Trigeminal Ireland Web Page 

Irish Independent Article on Trigeminal Neuralgia







Trigeminal Neuralgia Ireland Support Group

My Battle With Trigeminal Neuralgia - Facebook