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. 

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.  

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

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? 

Hitting a Nerve

So I had a nerve block done yesterday, and I feel worse than ever!

After the procedure, I woke up my face was on fire, my head felt like it was trapped in a vice and I screamed out with pure agony. I was told not to expect it to work straight away, if it worked at all. I had the nurses shove an oxygen mask on my already throbbing face, which caused electric shocks to bounce around my head. They must have thought I was nuts, but I was in such pain I couldn't speak. 

Sometime later, I calmed down. I suspect I was given something, because my blood pressure was sky high. The tightness in my head lessened a little, and as soon as I could stand, and with the doctor's blessing, I left the hospital. There was no way in hell I was going to stay any longer than necessary. 

During the long drive home I slept a little, the anaesthetic kept knocking me out. I got home and I suspected that the block had failed. On top of my usual nightmarish pain, I felt like I was hit around the head with a crowbar. I could feel some numbness on the top of my head, but this morning it was gone. I am so disappointed, and confused. Why aren't any of the medications or procedures helping me? 

Trigeminal Neuralgia is such a monstrous condition, it's so difficult to treat and there is no cure. I am not giving up though, there HAS to be something the doctors can do! They are the absolute best in their fields and I have faith in them. 

I have been told that there may be a Migraine element to my pain, and until I see that particular specialist (I got an appointment for November,) I won't have any answers. If I suffer from migraine's too, and I really suspect I do, I may finally get some medications that will help both my Atypical Trigeminal Neuralgia and Migraines. 

Fingers crossed, and perhaps the block will take effect after all. All I have got is hope. 

H - Hold 
O - On
P - Pain
E - Ends 

Stereotactic Radiosurgery (Gamma Knife)

In my last post, I was battling a serious decision. Stereotactic Radiosurgery (Gamma Knife) is no joke. Despite my reservations and my spine chilling fear, I have decided to go ahead with it.

I have weighed all of my options, and I have asked my family and some good friends for their advice. I have debated, an completely freaked out about what I was going to do. As this pain is getting worse and worse, I think I have no choice. The risks for side effects are there, but every single surgery and procedure has their own set of side effects.

After watching some videos and doing some research, I feel more confident. There is a 20-30% chance of success, but I may be one of the lucky ones. I dream about being pain free, or having some low pain. If it lasts for a couple of weeks or months, it will be worth it. 

Some Scary Decisions Ahead.

This morning I had an appointment with a Radiologist in the Oncology Unit in Beaumont Hospital. It didn't go as planned though, and I am left confused and depressed. 

As I have Atypical Trigeminal Neuralgia, I am very difficult to treat. I have a constant burning pain down the left side of my face, stabbing pain in my ear and jaw with electric shocks joining in. This is going on 2 years now and I am losing hope. This morning I went to my appointment and the treatment initially offered is called Stereotactic Radiosurgery My Neurosurgeon told me that the chances of success is between 20&30% and there are some side effects. 

It turns out that there is a whole lot more to this than I thought. The procedure involves a huge dose of radiation focused on one piece of the fifth cranial nerve. This happens to be close to my brain stem which worries me. Apart from a low success rate, I could be left with numbness down the left side of my face, my face dropping, vision problems, the left side of my body could be numb or there could be severe muscle weakness. As there would be an enormous amount of radiation focused on the nerve, it could cause cancerous tumours in the brain in the future. 

I will admit that I am scared. Although the chances of these side effects are low, it is a possibility!

For the chance of a low pain future, is it worth putting myself at risk? What if I end up suffering paralysis? How will I cope and what will my quality of life be? What if I end up numb? I was told that it could effect my left eye and I could get an ulcer there. If something goes wrong, what will I do? 

I have faith in my doctors, I really think they are excellent, but they are mere men. They are not magicians or miracle workers and they have their limits. 

I really don't think that I can go through with it, although the doctors have to have another meeting to discuss my case. They may decide that it's too risky, or that as my symptoms are so atypical there is little point taking a risk. 

I am seriously confused, and I am sad. I was full of hope, dreaming of a procedure that could remove a little of this monstrous, beastly and constant pain. 

Darkness Into Light??

I never thought that I would say this, but there may be light at the end of my long and painful journey. 

So over the past few weeks, I have been to my neurologist and my neurosurgeon, among others. I have been told that my particular type of ATN is one of the most complicated cases that they have seen, and this didn't make me feel any better. The good news is, that they are determined to try and get me some relief. I was given three options, but the first option preferred by my neurosurgeon is the Cyberknife. It is not invasive and I was told that it was painless. There can be some nasty side effects, but I really couldn't give a damn. I've had enough of this pain. Unfortunately I was told that there is only a 20-30% success rate that there will be ANY difference to my pain, whilst most others with typical Trigeminal Neuralgia have about a 50-60% success rate, according to my doctors. If that fails, nerve blocks and open brain surgery are next. 

I must say here that my Neurosurgeon is excellent. He knows what he is talking about, and he is very direct. He also has enough empathy which makes him likeable. He spoke at length about the procedure, and of course told me that I could be at risk of even MORE painful conditions! I don't really have a choice though, I need to do something about the pain, I have to take the risk. 

I will have this done in about 3 months, which is great considering the completely ridiculous waiting lists and the stupid, stupid Health Service Executive. I have the right to moan and complain, I have sat in A&E in unbearable pain for long periods of time, without pain management and there was one doctor that asked me what Trigeminal Neuralgia was! After sitting in an ass numbing chair for eighteen hours, then being admitted and sitting in another chair for a further twenty four hours, a doctor had the nerve to ask me what trigeminal neuralgia was. The best way to put it is this; I got very angry. I was tired, crying with pain and extremely pissed off. I then began to wonder what kind of a health service can treat people that way. Then I looked around me. Nurses were running from patient to patient, and I could see that they were trying their best. The sheer number of patients, packed into the small department was scary. People in trolleys were lined up against each other, all illusions of privacy gone. Then there were the people in chairs, also lined up parallel to the trolleys, leaving just enough space for the nurses to scurry by. I looked at the doctors too, and that scared me. They were tired, and I wondered how long their shifts were. I could also see that they were trying, and I could forgive the doctor who didn't know what TN was, barely.

Since that stay in hospital, I didn't really have much faith in the system or the doctors. There were thousands of people coming through the doors of the hospital every day, and most of the patients needed their help more that I did. They didn't remember names or faces, did they? 

When I sat in the appointment room to see my neurologist last week, I expected the usual speech. "We'll increase your meds etc... and see you back here in three months." I was shocked that the doctor actually remembered me. He wasn't just saying that, he knew specifics about the case. I went over the usual stuff, and then he called his boss, the neurologist. I will say this, I was treated very well. They both listened to me carefully, and made some observations. They were the usual ones, but the point is, they made the time to listen and give advice. They all wanted to see what the neurosurgeon thinks and take it from there. I would rather honesty any day. As I have said above, my appointment with the neurosurgeon went very well so my faith in doctors has been restored... well for the moment. 

I have learned a lot since my initial diagnosis with Trigeminal Neuralgia. The most important thing is don't give up, and don't sit idly by and wait for a magical cure. I went to A&E when the pain spiked (well I was made go, but you know what I mean.) I sat in A&E and waited for hours and hours each time to get help, because that is my right. I nagged the doctors for appointments, and I often nagged their secretaries for cancellations too. The severity of my case helped push things along, but making the odd phone call, or sending an email can help. 

Don't sit at home in agonising and unrelenting pain. I know TN pain is agonising and never ending, but when the pain spikes, go to A&E if you can. Just because our pain is invisible, it doesn't mean we shouldn't have access to the medical care offered to everyone else. There are also going to be doctors and nurses who have never heard of TN, I simply tell them to "Google" it, and I tell them I have a huge file and give them my consultant's name. I get no more moronic questions after that. There are also fantastic print-out's that can be obtained online (not wikipedia, although it's fairly accurate). 


So I am hopeful at the moment, despite the scorching burning pain and thousands of shocks and stabs I have to cope with daily. 

Worst Pain Ever

Since my last post, I have suffered through the WORST pain I have ever felt. I don't know what's going on in my skull, but the pain is terrible. 

My meds are increasing all the time, so is it weird that the aren't working? Or, how much pain would I be in if I wasn't taking anything? This is not a question I want to answer.

I try to rest as much as I can, I have tried to get out of the house and do stuff and I have tried to push the pain away. It's impossible. I thought if I got out of the house perhaps the distraction would help. I can tell you what happened. I walked like a drunkard, the world was spinning around me, and the pain was even worse! My eye was twitching and I looked peculiar. I have a blown pupil on my right side (my TN side is my left). When I am in a terrible storm of pain, the pupil difference is obvious. Sometimes when I wear my glasses it isn't as noticeable, but I can't wear them now as they hurt my face. So I can't see very well.

Considering I may not find a solution for quite some time, I have to live my life. I am trying to find a way. I hate being locked inside my house for days at a time, especially this time of year and the fucking wind is my mortal enemy. I hate being unable to work, and I despise being dependent on family to take care of me. 

Not too long ago, I was a worker bee. I loved working, even when I changed careers. I thrived in the workplace and I always envisioned myself as having a good work ethic. I want that back. 

I know there are people out there suffering so much more than I am, and I hate to whine. 

I am trying not to take that fecking Oxynorm. It doesn't make any difference, but it does help me sleep for a few hours. I don't think that is what Oxynorm is for though. That's another thing, I don't get a good nights sleep anymore. It's just ridiculous, and there are no quick answers. 

Pain, Pain and More Pain.

Well Christmas has come and gone and Santa failed in relieving some of my pain. I was such a good girl this year... so why did he forget me?

Anyway, I ended up in hospital AGAIN just before New Years. Now anyone who reads my blog knows that I despise hospitals so that is an indicator to my state. My trigeminal neuralgia pain hit entire new levels. Every single fecking time I say that this pain cannot get any worse... I am proven wrong. The pain intensity is inhuman and I get absolutely no low pain moments. I am also constantly dizzy and faint, and I get a sick feeling in my stomach and tingling pain all over my body. My left arm and hands are either numb, sore or completely dead. My GP was concerned about the new symptoms so he sent me to Beaumont. 

I don't know how much more of this crap I can take. After an ass numbing 9 hours in steel chairs and examinations by two nurses and three doctors, the solution was increased meds and a prescription of oxynorm. Now, I know for a fact that opioids and analgesics have no effect on my pain, so why did the young neurology doctor in Beaumont write me a prescription for oxynorm? Well I think that the young man hadn't a fecking clue what to do, and I actually felt sorry for him. Trigeminal Neuralgia is rare, so I can forgive him for not knowing about the condition. He does work in the neurology department though so he should know something about neuropathic pain? 

He wanted me to stay the night and see the consultant in the morning, but I refused. Spending the night in a chair without a blanket or pillow causes more pain and distress. I am not exaggerating when I say that it is actual hell. I also had no interest in seeing the consultant for about two minutes until he moved onto the next patient. The bottom line is this: I need something to be done. I can't wait for months or years while my entourage of doctors use me as a walking and talking guinea pig and they don't care that my quality of life is slipping away. 

My Tegretol is being increased and I am feeling worse not better. I am very sensitive to medications and the tiny amount of oxynorm I am prescribed knocks me out. 

Men have walked on the moon, atoms have been split, and yet there is no cure for the most painful condition known to humankind. What the fucking hell is going on? I know that I am not alone, and that is frustrating. I am due to see my pain specialist later on in the month and a neurosurgeon in March. Let me say here that I will not paint on a smile and agree that their "solutions" are good ones. I am in pain, I am angry and I am sad. I can hardly walk in a straight line! I am only 29 years old. Enough is enough.

Winter and Coping

Winter is here for definite and let me tell you it's having some effect on my trigeminal neuralgia pain. 

The wind and cold triggers my TN to unacceptable levels. Last year I could wrap up in a scarf and try to cope with it. Scarves are not so easy to wear at the moment. The material against my face hurts a lot, but the wind and cold is worse. My symptoms seem to be growing and growing. I never minded winter before, but now I hate it. 

I have this condition a year and a half now, and I really admire those who have suffered with TN for years and some have suffered decades! How are they doing it? 

I try and take each day as it comes. Every time I wake up and the pain hits, it's soul destroying. I am also an insomniac. Why is everything worse during the night? Is it the fact that there are fewer distractions to take my mind off the pain for a while? I sleep about three or four hours a night if I am lucky, It's not enough, but napping helps during the day.

My love of the written word has been my ultimate distraction technique. When my vision is dodgy I still try and read as much as I can, although it is difficult. I love music, and although I can't put an earphone into my left ear and I have to keep the volume low it helps. 

I have tried to exercise a little too. I am not able to work at all so I am at home all the time. I hate it, but I am trying to keep going. Exercise sometimes triggers intense pain. I can't understand it. 

The migraine element is really packing a punch. I have to try and sleep propped up on four pillows. If I lie down flat, the pressure in my head and the pain running down my arm is frightening. I am still waiting to see the migraine specialist, and hopefully he can help. If the migraines are controlled, it might help me cope better with the TN. 

Trigeminal Neuralgia Hell

The past few weeks haven't been easy at all. This pain is getting worse, and every time I think to my self, "This pain can't get any worse than this," I have been wrong. 

Seriously wrong. 

I know that Trigeminal Neuralgia is documented as the worse pain known to humankind, but I am telling you living with this shit is pure hell on earth. 

This pain is relentless. It's like there is battery acid eating through my face, as well as an ice pick stabbing me every couple of minutes. I will say this again... this pain is constant. Oh, and lets not forget the electric shocks. I have said this before and I will say this again, I am sick of it. 

I am on five different types of meds, and I can't really take anything else. Painkillers are useless, but sometimes I take them when the pain gets too much hoping that they will help. They never do.

Another thing that pisses me off is this; being told that "it could be worse!" 

Seriously are they mad? It goes to show how little people know and understand about TN. Imagining such pain must be difficult, and I know that before this condition hit me, I wouldn't have understood it myself. Keeping friends is so hard. This condition has had such an impact on my life that going for a coffee, or going to the cinema are impossible most days. Leaving the house is hard, and there are days when I haven't got the strength to get out of bed. When you cancel plans, I have found that the vast majority of people lose interest and I can't blame them. If I didn't have such a great family, and some awesome TN friends, I would be lost. 


I am not lazy, but I feel that I am when I am unable to do the simplest of tasks. Take today for example;
I could barely get out of bed. Moving hurt like a bitch, and every time I moved my head I felt a wave of nausea. The best I could do earlier is put on my favourite TV show, turn the volume down, close the curtains and try and lie down until it passes. This makes me feel like a lazy slob. 

I just want this pain to ease a bit, wanting it to end is too much of an ask, but maybe the doctors will figure out some sort of a cure. There are new and wonderful things being accomplished all the time, so fingers crossed.

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

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

Body Betrayal

It seems that my body is betraying me. 

My eyesight is still as bad as ever, and that is a complete disaster to me. I have a passion for books, both reading them and writing too. I have a back round in editing and with failing eyesight, that is completely impossible to continue.

At the moment, the sight in my left eye is all but gone, just a little pin prick of vision remains. I have had a rough week with the soul destroying pain of Trigeminal Neuralgia, and as a result my eyesight has suffered. It will improve as the pain eases slightly, but it hits me like a sledgehammer without warning. My pain is continuous, but a few times a day the pain gets so intolerable, strange thoughts float through my mind. They are there for a split second, but they are there. There is no way in hell that I will ever act on them, but when the pain gets so bad, and the darkness threatens to take over, these thoughts can act like an escape plan. 

The entire left side of my body is also betraying me. There are times when the entire left side of my body goes numb, especially after a bad attack. Other times there is some pain in my hand and down my left leg.

It's freaky. 

I could be standing up and I get pins and needles in my left arm, and sometimes in my left leg. I lose the power in my arm and sometimes my leg, so standing up can be a challenge. 

I had an appointment with my pain management doctor last week, and he is concerned about these new symptoms and my level of pain. It is widely known and documented that Trigeminal Neuralgia pain and the frequency of attacks increases with age. I am 28, what will this be like in 5 years, 10 years? 

I am being referred to a Neurosurgeon, and that scares the shit out of me. I don't want anyone messing around in my brain, but can he help me? I have read that Atypical Trigeminal Neuralgia is so difficult to treat, and very few procedures have any effect. 

So now I will have 4 specialists on my case, not including my GP. It is daunting and frightening. some element of my life back, that's all. I want to be able to work, have some kind of a social life and be "normal" again. I want to have the same problems and worries that everyone else has, instead of the constant fear of more and more pain. Maybe this surgeon will have some answers for me?

One thing that I am worried about is this;

I am terrified that there is more to my diagnosis than ATN. I keep getting the impression that the specialists aren't telling me everything, but perhaps it's simple paranoia. I have a few more symptoms that I haven't mentioned, and those are for another day and another post. I have informed my doctors, and I got a piercing look from my pain specialist. My GP is pretty much powerless now, but he is great for advice and some reassurance. I have to touch base with him regularly so he can monitor my medications. 

I want my proper eyesight back, I want this numbness in my body to go away, and above all I want this monstrous pain gone forever. Those may be pipe dreams, but the little bit of hope that I still have is all I have left. 

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?? 

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

Limitations and Lethargy

My life has changed so much since my diagnosis. Atypical Trigeminal Neuralgia has leached the energy from my system. I am 28 years old and I need to nap a few times a day. Seriously, I am only 28! 

I am so tired all the time, and there are some nights that I get a few hours of much needed sleep, but the way I feel now, I could sleep for a week straight. My dose of Amytriptyline has been increased so I am taking 100mg at night. This is effective mostly. There are nights that I wake up and I want to scream. 

It feels like Freddy Krueger has torn open my face and attached jump leads to every nerve. Showing that I am in pain is exhausting, but pretending that I am ok is completely draining. 

Is it the medications that are causing this lethargy? Is it the fact that I have constant extremely bad facial pain? Is it a combination of the two?

I never, ever would take a nap during the day. Even when I was younger and I had a raging hangover, I would still get out of bed and do something constructive with my day. Sometimes when I was quite ill I would have to stay in bed, but I would usually watch old movies all day, feel sorry for myself, but I wouldn't nap.

Napping makes me feel like a child, but it is something that is necessary to function. 

I have realised that there are limitations now, I can't do everything that I used to do and making peace with that is difficult. I have to be kind to myself, and everyone that has Trigeminal Neuralgia or any other chronic pain conditions needs to do the same.