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.  

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. 

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. 

Winter and Coping

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

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

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

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

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

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

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

Trigeminal Neuralgia Hell

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

Seriously wrong. 

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

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

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

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

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


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

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

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!! 

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. 

Is Pain All That There Is?

Trigeminal Neuralgia pain is the worst I have ever felt in all my life. 

Sleep is difficult, talking hurts like hell and every single thing that I need to do on a daily basis is becoming increasingly difficult. Brushing my hair is hell, showering is pure torture and brushing my teeth feels like I am using a cheese grater inside my mouth instead of a toothbrush, Moisturising also hurts, and putting on make-up is nasty. 

I feel really self conscious without my war paint. I despise leaving the house without it. I know that it is a silly and some people would say stupid thing to worry about, but it is how I am. 

I just want some of this pain to ease. Just a little. I have daydreams often. In them, I am working, living my life and completely pain free. I would give almost anything for this. It is futile, and each day passes with extreme burning pain, electric shocks overwhelm me every couple of minutes and the stabbing sensation is never ending. 

I feel that I am loosing myself. I look into the mirror and my appearance has changed, there is a blank and glassy look in my uneven pupils, my skin is pale and the swollen black bags under my eyes make me look like I am much older than my 28 years. 

I also don't recognise the woman reflected back. I am miserable, and there isn't much in life that brings me joy, and I don't care about very much any more. I do try and put up a front, I paint my face, struggle to tame my hair and plaster a smile on my face. 

My medications make me feel drunk and stupid, and I am positive that my IQ has dropped 50 points since my diagnosis, which for me is torture. 

Sleep is certainly my nemesis of late. 

I wonder how long I can go without sleep? 2 or 3 hours a night is ridiculous. I have to keep hoping that one morning I will wake up, and my first thought or yelp isn't due to pain. I want my vision back, I need it back. I read a lot, and I love to drive. 

Will there ever be an escape from the pain? Is pain all that there is??

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. 

Greenock Telegraph Article on Trigeminal Neuralgia

http://www.greenocktelegraph.co.uk/news/greenock/articles/2014/07/23/504789-no-cure-for-greenock-woman-who-suffers-excruciating-pain/

An article about a young mum's struggle with Trigeminal Neuralgia

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.  

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. 

Fun and Pains

So today activated my Trigeminal Neuralgia big time and it was my own damn fault. I went on a family day out, well I was persuaded. It was a theme park so it was mostly outdoors, and today it was quite breezy. 
The wind hurt like hell, and I cannot describe how difficult it was to walk casually through there and not scream out in pain. As it is July, I would have looked like a clown wearing a scarf, so I went without. 

I am so sick and tired of letting TN rule and ruin my life. I have been living in fear a year now! How long more of this do I have to take? So today was a big deal for me. 

It was a great day, I saw Emu's, Puma's, Eagles and fricking TIGERS!!! It was awesome, and just seeing those magnificent creatures really helped my mood and I was so grateful for it. 

If I had allowed the TN and the fear and panic that comes with it to keep me at home today, I would have seriously missed out! 

I am in so much pain now, breathing is difficult. I can barely swallow and I know tomorrow will be worse and that is if I can sleep tonight. I have places to be tomorrow so I will have to get on with it. My vision has gotten worse now, and my face is slightly swollen, and as I am female I would like my face to at least look normal tomorrow. Just because I feel like shit, doesn't mean I have to look like it!