Three Years of Pain.

It's three years this week since the Trigeminal Neuralgia beast started to hunt me down, and ever since that day it has been stalking me, never leaving me alone. The pain has gradually gotten worse over time, and now it's at an unbelievable level, a level I can't tolerate. 

Doctors have tried and tried to help me, but as of this moment it was all a gigantic waste of time. I don't blame them at all, I know that they have done all that they could. It's this illness. It is monstrous and mysterious. 

So let me talk about the last couple of months. To but it bluntly it has sucked. My pain has changed slightly. The TN pain started on my left side originally, and I have ATN, so it NEVER goes away. About 6 months ago, it started on my right side, but not so bad at first. Now, it is a rival to my left side. How the hell can two Trigeminal Nerves screw up at the same time? Every moment is torture, some days are better than others, but on the whole, the burning and stabbing pain is always there. I can't forget about those shocks either, they invade my life regularly. There are days when the shocks are almost constant. 

One fairly new symptom is a crushing pain in my head, with most of the pain targeted over my eyes. Light bothers me a lot too, and sometimes I feel physically sick. It's not often that the nausea takes over though and I am thankful for that. My balance is wonky too. 

I have looked up the new symptoms and it sounds like cluster headaches. I have already been diagnosed as having Migraines, so this latest addition pisses me off. I will talk about this to my pain specialist on my next appointment. My GP is powerless to amend my medication, and he is reluctant to prescribe anything else. 

I dread to think about how I will feel this time next year. Will the pain continue to spiral out of control, OR will one of my Consultants figure out a way to help? I have to keep on hoping. All of us who have been ravaged by this sadistic illness have to keep hoping and to never give up! 

Our Awareness Day on October 7th is all about raising the public perception of this illness, and it is global. There are fantastic places Lighting Up Teal all over the world, including 15 in Ireland. A team of dedicated TN sufferers have committed themselves to creating worldwide awareness, and it is coming along nicely. The full list can be found on the TNNME website. 

TNNME - Light Up Teal 2016

Light Up Teal

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. 

Light Up Teal Venues 2014

To date, we have 5 venues throughout Ireland that are going to Light Up Teal for International Trigeminal Neuralgia Awareness Day on October 7th. They are

• The 3Arena, Dublin
• The Convention Centre, Dublin
• The Mansion House, Dublin (Residence of the Lord Mayor)
• Bishop's Palace, Waterford City, Co. Waterford
• St. Coleman's Cathedral, Cobh, Co. Cork.

This is so exciting that our small country has so much support. There will be photographs uploaded next week!!

Trigeminal Neuralgia Awareness

Keep The Ribbon Going!!

Trigeminal Neuralgia Awareness
mytnbattle.blogspot.ie

Trigeminal Neuralgia Awareness Day!!!!

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

October 7th 2014

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

Light Up Teal

My Battle with Trigeminal Neuralgia

International Trigeminal Neuralgia Awareness Day

Trigeminal Neuralgia Awareness

Today was a shitty day. I don't apologise for the language as this is my blog, and I need to vent. 

This pain is not getting any easier to deal with. How much pain can the body and mind endure? I have reached my limit and I am hoping every day that either my medications will start to work, or this pain would dull for a while.

If you are wondering in disbelief about the pain I describe, let me paint you a picture. 

Imagine that your face is being burned by acid. How painful would that be? Now imagine that pain ALL the time. Not pretty.

Not only does my face burn constantly, but I am getting hundreds of electric like jolts of pain every day. Imagine being struck by lightening over and over again. Not nice. 

Along with the horrific burning and shocks, I constantly feel like I am being stabbed in the ear with an icepick. 

Now I am not writing this for pity or any such crap. I am pissed off. I have went through almost a year of this, and just when I have reached my pain threshold, it gets worse. 

I also don't believe that Trigeminal Neuralgia is as rare as the documentation wants us to believe. I know that there are people out there that have been misdiagnosed. I was in A&E and there were nurses and a few doctors that never heard of Trigeminal Neuralgia. If my medical file wasn't available and if I hadn't insisted that my consultant was informed, I would have been sent home with a couple of paracetamol and told to rest. 

That is just plain wrong. I have read countless accounts of people being treated in that way, and this crap goes on for years! I know that I am lucky to have a diagnosis so quickly and I have had a serious amount of tests and scans that aren't widely available. 

If you are reading this and you feel that you are not being diagnosed properly, speak out. Nobody knows your body better than you. These doctors are being paid to look after you! It is their job. I know that doctors and consultants can be quite intimidating, but they are being paid a lot of dough to fix us. 

We really and truly need more awareness. The blank looks that you get when you say the words Trigeminal Neuralgia will wear you down. I even had some dumbass say to me that that Trigeminal Neuralgia is a fancy name for a headache. I wanted to rip her throat out, and that is me being nice. 

Now I am not normally an angry person, I am quite calm although I have one hell of a temper. 

We are approaching the International Trigeminal Neuralgia Awareness Day on October 7th. Our teal ribbon is available to download on every search engine and it should be shared around all social media sites. Awareness will lead to understanding, funding, and eventually a cure. 

Trigeminal Neuralgia and other forms of facial pain are life altering conditions. How to deal with these conditions on a daily basis is a challenge and one we must win. 

Top 10 Things To NOT Say To Someone With A Chronic Illness

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?

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.

Trigeminal Neuralgia Awareness Day

Click the link below to find out more about International Trigeminal Neuralgia Day 2014. Spread awareness!!

Light Up Teal for Trigeminal Neuralgia