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.  

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. 

We Need A Cure -- Seriously.

It's over a week since my Stereotactic Radiosurgery and my Trigeminal Neuralgia pain is as bad as ever. The procedure was performed on my left side, which is my "bad" side, but my right side is gradually getting worse. I am keeping a pain diary. Looking back through the entries, I can see it all in black and white. My left side varies between 8-10 out of 10, and my right is between 5-8 out of 10. 

I am so disappointed, I hoped and hoped that my pain would be a little better by now. I had dreams of coming off some of the crappy tablets, lifting some of this terrible brain fog. I actually did have dreams, but I awoke to pain. It seems that hoping was pure folly. My doctors have said that it could take several weeks for the pain to ease, but come on, lets be realistic here. It's not going to be that easy. 

Why can't the medical community get up off their arses and find a cure? I do know that the http:Facial Pain Research Foundation are doing their level best to discover a cure for Trigeminal Neuralgia. It needs to become a worldwide issue and I believe that nothing will change unless a celebrity is afflicted with this monstrous condition. Now don't misunderstand, I wouldn't wish it on my worst enemy. It's up to the World Health Organisation to pull up their socks and help the millions of people suffering with Trigeminal Neuralgia. There are some people that don't make the statistic. As well as all the mis-diagnosis, our families and friends are living through it too. 

Watching us in pain, and in horrific pain on a daily basis must be devastating to out families and friends. They are completely powerless and yet my own family are so supportive. I understand that chronic pain is a difficult and sometimes impossible thing to empathise with. Our families are victims of this illness too. They watch us changing from worker bees and social butterflies. We become semi-reclusive and our moods are quite dark. 

So do I still dare to hope that my procedure will work? If I continue to and the pain remains it will be truly soul destroying. I have this monster two and a half years, and unlike many people my age I dread the year ahead.

Here is a link to the TNnME website, where there is a petition to get Trigeminal Neuralgia onto the World Health Organisation's "Health Topic List." It's a fantastic website and well worth a browse! 
TNnME - Petition to the WHO

Pain, Pain and Even More Pain!

The intensity of my pain is frightening me. I have gone through too much of it lately and I do not know how much more I can take. 

I am getting pain on my right side too. Now I have done the sensible thing and I went to the dentist. There was a small chip in a filling, so he fixed that. He took x-rays and there is no dental problem there. Call me crazy, but I was seriously hoping for a rotted tooth, or a missing filling. Alas, my teeth and gums are fine for the moment. I went home, hoping that everything would be fine. 

I waited a couple of days, hoping that the pain would calm down, and it was residual dental pain. Nope, I was effing wrong. My next trip took me to my long suffering GP. I knew by the look on his face that he suspected that Trigeminal Neuralgia is the culprit, but doing his due diligence, he prescribed some anti-biotics and some pain killers. I went home, a little more hopful, but that nagging feeling in the back of my mind was still there. 

The past week has been complete and utter hell. I got through Christmas, and oddly enough my pain was bearable. Since last Sunday week, my Trigeminal Neuralgia pain has been increasing. My left side is my "bad" side and I expect the drilling, throbbing and stabbing pain to be there from when I open my eyes in the morning to when I manage to close my eyes at night. The electric shocks are taking my breath away and I feel like I can't breathe. My right side is not as intense, but it's pretty bad. My head feels like it's stuck in a vice, a sharp knife plunging in and out of both ears. Jump leads are attached to every single one of my nerves and it's driving me crazy!! 

I have been quite depressed too. My general mood is dark, and sometimes I want to fall asleep until they come up with a definitive cure for Trigeminal Neuralgia. Now I want to make one thing clear. I have never, ever thought about suicide, and I hate having to use that word at all. I have cried myself to sleep, screamed into my pillow and stared at my bedroom ceiling trying to retain what is left of my sanity. I still have hope, and I am constantly surrounded by people who understand and who wish they could help me. I have reached out to support groups online, and there are some wise people on there, who know exactly how I feel. 

I am going to my GP again in the morning. The anti-biotics haven't worked, so lets get the ball rolling on a proper diagnosis. I know that my TN is now bilateral, but the sooner my doctor agrees, the sooner all my consultants can amend their treatment plans. I am still waiting for my Stereotactic Radiosurgery procedure, but judging by Ireland's health care system, that is no great shock. 

At this very moment my pain is an 8 out of 10, which allows me to write this. When the pain gets more intense I can't even look at a computer screen. Now that pisses me off. I can hardly stand even this level of pain. 

To anyone that reads this who is in a dark place, please reach out. There are support groups everywhere online, and there are some superb ones on Facebook. Talk to friends or family if you can, but if you can't, go and see your GP. 

It takes tremendous strength to realise that you need help, it's a hard thing to admit. Once it's out in the open, trust me, life will get that little bit easier.

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 

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. 

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. 

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.  

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!! 

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. 

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

Extreme Pain Day

Really bad pain at the moment. I was in a terrible state earlier on in the week and yesterday it eased off a little. It was tolerable, but now it is excruciating. Trigeminal Neuralgia truly is my enemy. 

Feeling so lost and down. Nothing I do helps, the medications are worse than useless and it takes so damn long to see a specialist. I have an appointment in two weeks and let me tell you it feels like two years. 

In the middle of my last bad flare up, I went to my GP, and I actually felt sorry for him. There is nothing that he can do but reassure me and monitor my medications. I still feel that I should go and keep him updated. He wanted me to go back to Beaumont, but that is not going to happen if I can help it. That place is a nightmare.

Every movement hurts, its not just my TN pain, but my entire head feels like its going to explode. It is really hard to describe. I have the usual TN pain, which is constant burning, stabbing pain and shocks every couple of minutes. This pain is so much worse (never thought my pain could get worse.) I don't have a headache, but the pressure is extreme. It's like I have been hanging upside down and all the blood has gone to my head. Light doesn't seem to be bothering me, nor sound, but every time I move my head I want to throw up. Maybe this is the Migraine element of my diagnosis rearing its ugly head!!

My vision is still wonky and that is scary. I told my GP of my concerns and he urged me to go back to Beaumont A&E. I can understand where he is coming from, but horror movies can be made about that place. (See earlier posts)

So now I have another sleepless night ahead of me. I am a professional insomniac at this point and it is a pain in the ass. 

Don't know what to do. I have taken the meds, now I am waiting for a miracle.  

Really Bad Day

So today I feel like complete shit. As well as this damn Trigeminal Neuralgia pain, i have felt a tell tale snap in my lower back and a huge burst of pain. This is not unusual, but I have a problem now.

My back is weak and it has "went" on several occasions, and the one thing that has helped is painkillers, especially difene. Now the migraine nurse has told me that taking painkillers will make my suspected migraine issues worse. Now I have put up a post about my suspected migraine symptoms, but it has not been clearly diagnosed by a neurologist. 

To make a shit day even shitter, my TN pain is off the charts. I feel like screaming, crying and ripping my face off and not specifically in that order. I am so sick of this pain. These medications are not working! I am taking Tegretol, Lyrica, and Amitriptyline. I am a glorified zombie. Yesterday for example, I was so uncoordinated that I dropped a plate, a full container of salt, and I spilled a pint glass of blackcurrant all over important paperwork. 

I look as bad as I feel and believe me for a woman that is hell. Although I force myself to take care of myself, I cannot bear my hair down any more as it brushes against my face, so it is in a high ponytail or a bun most days. Make up is a no no, unless there is a good reason for it. Putting on moisturiser makes me cry, so applying and especially removing make up is torture. 

So do I continue to do what I was told by a bunch of doctors and a nurse when their treatment plan is clearly not working? Or do I take the meds that I need to cope with my back pain?? 

Trigeminal Neuralgia and Migraines

As I was saying in an earlier post, my doctors reckon I have Atypical Trigeminal Neuralgia and there seems to be a migraine element there too. So the Atypical TN bit I understand, but the migraine bit confuses me. 

Up until recently I believed that a migraine was a really bad headache that sent you to bed for a day or so and that was it. I have had these episodes in the past and I never realised that it could be connected to my TN pain. I was grilled while I was in hospital by countless doctors, but then a nurse came along with a different set of questions which shocked the hell out of me. Everything she said made sense! I suffered really bad headaches since my teens, the kind of headaches that make you vomit and send you to bed for a day or two. A migraine is not necessarily a headache, but it refers to nerves in the brain. The problem is that analgesic medications can make a migraine worse, so unless you are on preventative medication, you are in trouble.

I don't have those headaches as often anymore, but the nurse is convinced that some of my symptoms have a migraine and cluster headache aspect to it. She feels that once my migraine issues have been treated, it could in a way help my Trigeminal Neuralgia pain. Unfortunately she said that my pain will never go away, but she is confident that it can be reduced. I am awaiting an appointment with her boss, a specialist who may confirm the diagnosis. The Migraine diagnosis would certainly explain what has happened to my eye.

The statistics regarding migraines are staggering. It is a lot more common that I thought, but how many people with migraine symptoms have been misdiagnosed? Is there a Trigeminal Neuralgia element there too? There are several different types of migraine. 

They are:

• Migraine Without Aura
• Migraine With Aura
• Migraine Aura Without Headache
• Basilar Migraine
• Hemiplegic Migraine
• Ophthalmoplegic Migraine

There are so many doctors in the dark about TN that most facial pain is dismissed as a headache and thats that. It seems that we as patients need to do the research. 

I consider migraine and headaches as a horrific addition to my already hellish facial pain. Correct diagnosis is essential. 

If you are unhappy with a diagnosis, get a second, third and even fourth opinion. Nobody knows your body like you do, and you know when something isn't right. I have been fortunate so far with my doctors, but my battle has just begun. The medications have not even put a dent in my pain, and my symptoms are awful, and in addition to the facial pain, I have an eye with little vision, and a left arm that goes numb often and sometimes I lose the power in it. 

Here is the link to Migraine ireland's Website

Migraine Ireland