Day By Day, Hour By Hour.

It has been a long time since my last post. It has been quite difficult to put pen to paper, I haven't been in the right head space. 

My pain has been absolutely horrendous. It has gotten worse and worse, to the point where it leaves me incapable of doing anything. Trigeminal Neuralgia has taken over my life, despite my valiant efforts to fight this monstrous condition. The pain is so intense now, it's difficult to function. I do have good days, where the pain isn't as bad. It allows me to be normal for a while, paint a smile on my face and pretend that everything is fantastic. That is almost as hard as dealing with TN. I will write more about that soon. 

What is normal though? Are any of us normal? I don't think so. I have had so much time to reflect on why TN has decided to invade my brain, why I have horrific Migraines and why I have Fibromyalgia. I admit I have spent quite a lot of time feeling sorry for myself. That was foolish, as it serves no purpose. I see things a lot clearer now, it's like a cloud has lifted. We are all unique, we all have our own little quirks and issues. Some happen to be worse than others, and some people seem to have everything laid out in front of them. Why is that?? 

I have been grieving for the life I used to have. My job, friends, and freedom. Trigeminal Neuralgia has taken it away, snatched it out from under me almost 5 years ago. I am now almost accepting the inevitable truth that I will have TN for the rest of my life. It's a hard pill to swallow, but I know things could be a hell of a lot worse. 

My pain is awful now, so bad that I cry my eyes out. I bury my head in my pillow to hide this from others. This is my Battle and I must fight it. I have wonderful support. My family are there when I need them, and I do need them often. 

Fibromyalgia has also decided to wreak havoc on my body. It's insane. I feel like an old woman at times, every bone and joint in my body scream in pain. My shoulders, elbows, hips and feet are really bad. I am always tired, even if I sleep. It's wearing me out. I have an appointment with the Rheumatologist soon, so lets hope he will have a magic wand and make it go away. If not, I will just have to keep going. Taking things day by day, and sometimes hour by hour. I have managed so far, no point stressing about things I can't control. 

Chronic Pain Times Two

It's been a very long time since I posted anything. Everything has been very difficult and up in the air. In my previous post I mentioned that I have had lots of new symptoms. I thought I was getting a bad flu, but the dreaded flu never came, but the pains became more frequent, more widespread and a hell of a lot more painful! I went to my GP, and he thought I may have Fibromyalgia. It was a preliminary diagnosis, as I only had the pains and aches for a couple of weeks. I was advised to just carry on, and hopefully the pains would subside. Guess what, they didn't. 

Along with the joint pain, my skin is so sore. Clothes feel so heavy, and I am so weak ordinary everyday tasks seem like a huge burden. I am also constantly tired, whether I get some sleep or not. My GP says that it's fatigue, another damn symptom of Fibromyalgia. I have been to my doctors many times since Christmas, and both doctors in the practice agree that as well as Trigeminal Neuralgia, I do have Fibromyalgia. But, Fibro has to be properly diagnosed my a Rheumatologist, so I am hoping with every fiber of my being that it's not Fibro. I would prefer something else that can be cured with some magic pill. Having one incurable Chronic Illnesses is bad enough, but two?? 

My Trigeminal Neuralgia and Migraine pain has gotten worse than ever before. The intensity is severe, the constant burning on both sides is so difficult to handle. The shocks are quite frequent, there are days when the shocks are only a couple of seconds apart. Those are extremely dark days, and there is nothing I can do, and nowhere I can go for help. I have vowed never to go to hospital again. The more I think of it, the more I realise how badly I was treated while there. My new Consultant lied to me, straight to my face. After I was discharged, I was promised I would be seen as an outpatient within 4 weeks. That was in August 2016. It's now March 2017, and I am still waiting for my appointment. This Doctor has helped to completely destroy my faith in the health system here in Ireland. (Which is not hard.) She lied to me, patronised me and she was quite aggressive and really mean. I was at my most vulnerable while there. I reached out and asked for some help, but all I got was false hope and lies. I will never go back there for help. I have to go back for outpatient appointments, but I will never go to A&E and if I ever do get a letter from her, I will tell her what she can do with it. I am still angry about this, and I realise that it can't be just me. How many other people out there have been treated cruelly in our hospitals?

Living with constant excruciating pain is such a battle. Trying to stay as positive as possible, plaster the fakest smile on my face is intolerable, but necessary. Someone very wise said to me recently, "We are all fantastic liars," and she is so right! What do the majority of chronic pain patients say when someone asks how they are?

Do they say;
"I'm ok,"
"I'm fine,"
"I'm good thanks,"

or

Do they say;
"I feel like s**t"
"My pain is really bad today"
"It feels like Freddy Krueger is tearing open my skull, while battery acid is running down my face and some crazy person has attached jump leads to each nerve."



I bet most of us go for the 1st option, where we lie and pretend that everything is sunshine and daisies. This deception is necessary for most of us, but it is draining and exhausting. 

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? 

Brain Fog

It's been a long time since I have posting anything, and I am sorry about that. I was in hospital for a week in August and I was worse coming out than I was going in. It's been tough, but some of the brain fog has been lifted. Let me explain. 

My pain had hit a new level of hell. I was so frightened, and I felt so alone. Trigeminal Neuralgia does that to us, it keeps us isolated, afraid and depressed. Anyway I digress. My GP insisted that I go to A&E, so I did, reluctantly. I hate HATE that hospital, and being away from home sucks. 

I was admitted straight away, and surprisingly got a bed in a ward quickly. That was it. I was sent for NO tests, NO scans, and I got NO answers. I spent a week there. A week away from home, away from my family, my dog and my cat. I was pissed off, and I wasn't shy about letting them know. 

A few days into my stay, my medication was slightly adjusted. The Tegretol was reduced and my Gabapentin was increased. The Baclofen and Amytriptaline was the same. The pain got even more intense, and I was given oxynorm and tramadol to try and control it. The opiates didn't even touch it. The new consultant saw me three times, that's all. She came to my room on the last day with a "plan." She was going to increase my Tegretol and reduce my Gabapentin. I saw red. I was being sent home with EXACTLY the same prescription I was already on! So I got mad, and I told her that she didn't have a clue how TN effected my life. I told her that she can go home, sip her wine and put her feet up at the end of the day, my name forgotten in a dusty file in her office.

After a while, she agreed to take me off tegretol and put me on topamax. She thought it would help the "Migraine" symptoms. After all, she specialised in Migraines. It's amazing how doctors can change their mind when confronted. 

I practically ran out of the hospital, but was ambushed by two shrinks. They wanted a chat and gave me info and made me promise to call them. Nope, I am breaking that promise. I don't need a shrink, I need a cure. My mental health issues all stem from the hell of living in chronic pain for the past three years. I know what triggers my panic attacks, so I don't need to sit across from someone and tell them my life story. I have no problem with therapy, none at all. It is just not for me. I have tried it, and it made me worse. 

So a couple of weeks on, some of the Migraine symptoms have lessened,  but the TN pain remains. The intensity is the same, the burning, the shocks and the stabbing pain. I am happy that the head pressure isn't as intense and my left arm no longer goes numb. The Tegretol fog is also gone, and I feel like I have woken up from a two year sleep. Tegretol is a dirty drug, and I will never take it again. I can think clearly again, I can concentrate and I feel more like the old me. If only this TN pain could decrease. 

I saw my Neurosurgeon the other day, and he is reluctant to do any more procedures just yet. He says there are no visible compression's on my MRI, and I am so young, surgery is a last resort. 

So I am still in pain, but the Trigeminal Neuralgia Awareness Campaign has kept me sane. The more awareness, the better. We may finally get a cure.  

I'm Ok.

I have had a couple of comments, and I appreciate all of you who have wondered where I have been. Over the past two weeks, I have spent a week in hospital, and the rest of the time in completely pissed off pain. I'm ok, but I have been told some things that I need to process, it's nothing too concerning. It's just some things are not the way I thought they were. I will give more detail in a further post when I can wrap my head around some things. Thank you all. 

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

Summer v's Trigeminal Neuralgia

All during the winter, I was hoping and wishing that the weather would get warmer. Well, the weather has indeed gotten warmer and it has had the opposite effect on my pain than expected. 

My Trigeminal Neuralgia pain has significantly increased in recent weeks. There are a couple of reasons that this could be happening. Firstly, my pain specialist wanted me to get off tegretol. I started to reduce my doses, which isn't pleasant at all. The intensity of my pain sky rocketed! I thought that I had hit my tolerance level, but I couldn't have dreamt that my pain would get worse. I made the decision to go back on tegretol, albeit a lower dose than before.

Sadly, my pain is still as bad as ever, and the hot weather we are having at the moment isn't helping at all. My face burns constantly on both sides, and the high temperatures suck. It's ridiculous. The cold weather bothers me, the hot weather bothers me, wind bothers me and I can tell when a storm is coming. There is absolutely zero relief at all! 

I haven't a clue what the future holds for me. At the minute the weather is bright, but my spirits are low. I have had to cancel arrangements, let people down and I am a cranky bitch most of the time. I have accepted that this is what my life is like for the moment, but it doesn't mean that I have to like it. 

I wonder if the warm weather bothers anyone else with Trigeminal Neuralgia? Everyone usually talks about the cold weather and wind, especially in Ireland where winter lasts about 10 months. I don't remember being bothered by the heat last year, but my pain has changed in the past 12 months. As well as it being Atypical, it's now more intense, I have pressure between my eyes and the top of my head often, my balance is completely wonky, and it is bilateral now. 

I am begging to see my pain specialist, but the health system here is so crap, I am not holding out much hope. I have regular appointments with him, but I need to see him urgently. I can't stick this pain, I just can't. My GP will help me as much as he can, but it doesn't help my now. Every day that passes feels like a month. There are so many struggles, even brushing my hair or teeth takes it out of me. Anyone with Facial Pain knows what I mean. I am hoping that tomorrow will be a better day. 

Dr. Paul Murphy, Pain Consultant.

Dr. Paul Murphy. Pain Consultant, St. Vincent's Hospital, Dublin. 

He talk about Chronic Pain. 

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? 

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.