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. 

Stereotactic Radiosurgery --- Finally.

I have finally gotten my Stereotactic  Radiosurgery procedure! Beaumont called me on Tuesday the 12th on January, everything was ready for my procedure the following day. I was excited and nervous at the same time, it's a big deal, well it is to me. Anything that involves radiation in close proximity to my brain makes me nervous. The positives are that it has a great chance to reduce my pain, and that would be absolutely indescribable! 

I took some painkillers and the lovely nurses in St. Luke's, Beaumont gave me a mild sedative. It was no match for the horror of the mask. The mask was hell. It was so tight, I couldn't even blink. Thinking about it now makes me feel nauseous. As I have Atypical Trigeminal Neuralgia, I have pain all the time. The slightest touch or breeze is like acid running down my face. The mask was a thousand times worse and I don't know how I got through it. The procedure lasted about an hour and a half, well that's what they told me. It seemed longer, much longer. The staff were so nice and so supportive. I held up my hand several times to get their attention. Each time they told me that I was doing so well and to try and hang on for a little longer. I needed that push, otherwise I would have been out of there after five minutes.

I don't want to put anyone off, this is my experience. I have spoken to several others who have gotten the same procedure. Some experienced pain, and others felt nothing at all. When you live in excruciating pain, it's worth a shot. Ask any person who suffers from any kind of chronic pain condition, they will try absolutely anything. 

There is no reduction in my pain levels at all. The past couple of days have left me bed bound. I am hoping that it will work, but the doctors said if the procedure worked, it may take a few weeks. 

I also want to mention something, something that has really pissed me off. In Ireland, you can elect to have Cyberknife treatment in some private hospitals. Cyberknife is very similar to Stereotactic Radiosurgery.  It costs in excess of €20,000! If you are lucky enough to have health insurance, the procedure is partly covered. Unfortunately, having a chronic pain condition causes unforseen financial circumstances for those afflicted. This means, of course that so many of us are no longer fit to work and we are either on Illness Benefit or Disability Benefit. There is no way that someone on a Social Welfare payment could afford any kind of procedure privately. Now, there is always a way. Despite the cutbacks and how crappy our health service seems to be, the services are there. We need to push our doctors to come up with treatments and procedures as well as trying different medications. It may be a long wait, but asking for cancellations helps.I have received excellent care, but I have always pestered my Consultants secretaries, and literaly begged for help. 

Here is a link where Benefits and Allowances are explained fully. 

Chronic Pain Ireland - Benefits and Allowances


More information about Stereotactic Radiosurgery can be found here;

Stereotactic Radiosurgery - Mayo Clinic

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.

Pain and Anger

So I am having the week from hell. It doesn't differ from any other week I guess, but I am becoming weary of it all. Trigeminal Neuralgia is a condition that has altered my life completely, an not in a positive way. 

I am also becoming aware of all the things that I can't do any more. I used to always focus on what I can do, and banish all the negativity from my mind. I can't do that now. I couldn't go to the cinema this weekend, I can't go to concerts any more, and it's impossible most days for me to leave my house. The inevitable roars of the dinosaurs and the bright flickering lights have stopped me from going to see Jurassic World. I had to leave the Avengers early a month or so ago, I literally couldn't cope with the sensory overload. 

It may seem odd, but loud noises, bright lights (especially strobe lighting) and strong smells, trigger an attack that lasts for days at a time. It's awful, the left side of my face is burning constantly as it is. The burning pain averages at a 8/10 morning, noon and night. Add to that bursts of electric shock and stabbing pain, I often cannot even rate the pain. 

I used to feel sorry for myself, and I was entitled too. Now I am angry. I am so angry that this condition is chipping away at my life with a giant chisel. I am on ridiculous amounts of medications and I am still waiting for the team of consultants to help me. They have acknowledged that my case is possibly the most complicated they have ever seen. Saying that, I have their promises that they are doing the best that they can. 

I couldn't go to Slane this year and there are awesome concerts coming up that I would love to go to. I know for a fact that I can't go, sometimes the noise and lights in a supermarket are too much for me. 

Since when did I become such a delicate human being? It makes me angry and sad at the same time. I am hoping that the Stereotactic Radiosurgery will help me, if not I am willing to try anything else. Well except Acupuncture etc. I wonder if this is normal, do people with chronic pain feel this way? I am battling with increasing insomnia, or painsomnia. It is impossible to sleep whilst in so much pain. It is also a possibility that this is adding to my general bad mood. 

Depression is another thing I can thank this monstrous condition for. I am trying to keep a handle on it, and while I am not a fan of "prayer" or some holistic stuff, I do believe in the power of meditation. Actually writing down how I feel is helping. As I write I can feel some of the tension leaving me, and that is the reason for this blog. 

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. 

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.

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.

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?? 

Mascara Madness!

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

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

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

Nope, no bruise.

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

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

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

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

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

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

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

Trying To Be Positive

I was so freaking angry the other day. Living with Trigeminal Neuralgia is a life sentence, and all that there is every day is pain. Now I am trying to be a little more positive, so here it goes....

I got to see my Neurologist yesterday, well I actually met one of his registrars. She began by asking me stupid questions that were already in my file. I asked her to read through it, I was in too much pain to talk. She took a few minutes, and then she wanted to do an exam. She asked me to do the usual stuff, like smile, frown, blink, raise my arms and legs while she pushed down on them. She was fascinated with my eyes. My right pupil never contracts, it's called a Homes Aides Pupil, and it was the end result of an illness a few years ago. 

She kept shining her light into my eyes, announcing that she can't see any reason why I can't see normally out of my left eye. The light pissed me off, because it set off a terrible attack. She simply stared at me while I cried out, trying to breath and fight it back. After about ten minutes of her just standing there watching me, I motioned for her to continue. 

I got the usual story..."complicated case....surgery is dangerous....atypical symptoms.....etc" In fairness to her, I don't think she saw a case of Trigeminal Neuralgia before, and she was quite nice. She wasn't condescending and she allowed me time to recover from the attack. 

I am being referred to another specialist that deals with more Atypical cases. Now, I was told this months ago, but I found out today that he was on a month's holiday, so everyone has to wait. He is the only Neurologist in Ireland that has the skills and knowledge for difficult cases. She promised me that she will do her best for me. 

I left the office sore, but a little relieved. There seems to be a plan for me. Some of my meds have been increased, and I am on the fast track to see this "miracle worker." 

I also went to see my GP today, who is awesome. He snorted derisively when he heard the term "complicated case". He said that every single Trigeminal Neuralgia case is complicated. He is continuing to send weekly letters on my behalf and it's a relief that he understands. I also have a wonderful TN family that have been so amazing, and things seem brighter. My pain is still horrendous but I don't feel alone. 

My back is another issue that is annoying me. My GP thinks it's sciatica, and plenty of rest and light exercise with some pain killers will do the trick. He gave me more information in 2 minutes than the idiots in hospital did in 7 hours.

So now I have to wait, try and rest, avoid triggering attacks even though I am in pain all of the time. 

I am a member of a TN group that are working hard to raise awareness, and we are getting there. It's amazing how some understanding, kind words and positivity has given me a much needed boost in confidence, and I feel like I have purpose again. 

Saying goodbye to my old life and embracing my new one is hard, and it's a struggle that I will win. 

Trigeminal Neuralgia Awareness Day is October 7th!!! Please support us by wearing TEAL!! 

Another Hospital Horror Story

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

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

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

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

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

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

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

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

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

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

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

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

Trigeminal Neuralgia Support

Trigeminal Neuralgia is an absolute nightmare. It has invaded every single part of my life, and it continuing to chip away at my soul. 

I am in pain constantly, 24/7 without a break. I never get a full night sleep, and it's even taking control of my dreams. I can't remember what life was like before TN hit. It's a long distant memory, and rather than it being my own recollection, it's like I have read a book about someone else. 

I am not the only one. 

That thought is frightening and comforting at the same time. I hate the thoughts of another person having to deal with this condition, but knowing that I am not alone helps. It's a paradox. 

There are some fabulous support groups out there. The people in them know exactly how I feel, they feel it too. Some people have suffered longer and they are in more pain than I am, and for my sake and theirs, there needs to be a cure. Sometimes surgeries can help, but that option is not available to every TN sufferer. Sometimes these surgeries make matters worse. 

The International Trigeminal Neuralgia Awareness Day is approaching quickly (Oct 7th) and we need to get the word out. Awareness not only helps regarding a cure, but it will help people understand. 

Anyone living with a so called "invisible illness" has the same story to tell. People find it hard to understand and there are even people that don't believe us.

I am a firm believer that if someone doesn't add anything to your life, but leeches every bit of joy and happiness from it, these people need to be cut off. Cut them off at the roots. Life is too damn hard with such people in it. It doesn't matter if these people have been your friend since childhood, cut them off. 

If you have Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, any other facial pain condition there are amazing caring people out there that always have a kind word, a reassuring presence and some good advice when things are hard. I have reached out, and I consider myself lucky because my family are a great support. 

Don't suffer alone, and don't suffer in silence. If the pain gets too much, go to the closest A&E/ER Department, but go with a thick skin. Many of the doctors and nurses haven't got a clue what TN is, so take some time to explain it to them if you can. I have a sheet of paper in my purse that explains briefly what Trigeminal Neuralgia is, what medications I am on, my GP, my Neurologist, and my next of kin. Do not let them label TN as a "headache," it happened to me before and it has happened to many others.

Another thing needs to be said. Only take the medication that is prescribed.  Don't take more than the stated dose, and don't take anyone else's pills. If the meds mess with your memory, a notebook is handy to keep close, even post-it notes are worth a shot. The TN community have lost a few people to accidental overdoses over the past couple of months, and it's a trend that needs to STOP.

Despite the pain, there is always hope. How far has society come in the past five years alone??There is more technology in your smartphone than in the Apollo 11 spacecraft that landed on the moon.. so there is hope for a cure. We need to speak out, inform people and educate those around us about facial pain. 

Contact me if you want some information about support groups, I will be happy to help. 

Meds Meds Meds

Well after seeing the pain specialist in hospital during the week, I am on a new cocktail of medication.

I have been taken off Lyrica and instead put on Gabapentin and Baclofen. So my new regime is Tegretol, Gabapentin, Baclofen, and Amytriptyline.

I hope that there will be an improvement, even a small one that will help. This pain is getting progressively worse as the weeks go by and it is frightening.

The pain specialist is brilliant. He knows what he is talking about and even though I have heard fantastic things about him, I decided that he is worthy of the praise. It's the same guy that performed the failed nerve block in hospital. He is hesitant to do any procedures and surgeries yet. The reason mostly is that my TN is Atypical. He is hopeful that we can control the pain. He is not patronising, and he really understands what living with chronic pain is like. He has enough empathy to relate to his patients and believe me that is invaluable.

There is nothing worse than dealing with a Dr. Doolittle that is sarcastic, crass and rude. I dealt with such a person while in hospital, and it took a tantrum (okay, it was a big tantrum) and a chat with the ward sister for him to cop on and treat me like a human being in pain, rather than a child on the naughty step. 

It's amazing the pain that the human body can take, and how much pain the body can produce. I am fucking sick of it.

I have been on this new medication combination for a few days, and it is not nice, the side effects are quite bad, I get confused and lose my balance very easily, and I have pains and aches in my hands and feet. Unfortunately, my eyesight is yet to improve, but I am still hoping everyday that the pain will ease a little and my full vision will return. 

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

Grapefruit and Tegretol

Here is a link to a very interesting piece regarding Tegretol and Grapefruit.I love grapefruit! Damn Trigeminal Neuralgia!!


http://www.livestrong.com/article/352481-grapefruit-and-tegretol/

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.  

Bad Flare Day

I used to really hate the heavy and clammy days, but let me tell you that when you have Trigeminal Neuralgia days like this are really nice.

No breeze.

No rain.

Heaven.

My pain has been really bad over the last couple of days, pain levels are 9 and 10 out of 10. I had a busy week, lots of things to do and everything caught up with me. That really sucks. I have gotten so weak!

I used to work full time, travel two hours a day to a job and have a bit of a social life too. I loved it! Now, a day out to a theme park and another day in the city took everything out of me. I could sleep for a week, except I can't sleep because of pain!

Trigeminal Neuralgia has taken so much from me, and it is slowly taking away my personality! I am a different person now, and I don't like it. I don't like being ill, being in pain and I want my life back.

Medications are also a problem. They make me foggy, confused, mess with my balance and really forgetful. They are still not hitting the pain. 

One positive today, I can go outside without being terrified of a breeze. Imagine that, being so scared to go outside! That has really got to mess with my mental health and that is something that I am concerned with.