Three Years of Pain.

It's three years this week since the Trigeminal Neuralgia beast started to hunt me down, and ever since that day it has been stalking me, never leaving me alone. The pain has gradually gotten worse over time, and now it's at an unbelievable level, a level I can't tolerate. 

Doctors have tried and tried to help me, but as of this moment it was all a gigantic waste of time. I don't blame them at all, I know that they have done all that they could. It's this illness. It is monstrous and mysterious. 

So let me talk about the last couple of months. To but it bluntly it has sucked. My pain has changed slightly. The TN pain started on my left side originally, and I have ATN, so it NEVER goes away. About 6 months ago, it started on my right side, but not so bad at first. Now, it is a rival to my left side. How the hell can two Trigeminal Nerves screw up at the same time? Every moment is torture, some days are better than others, but on the whole, the burning and stabbing pain is always there. I can't forget about those shocks either, they invade my life regularly. There are days when the shocks are almost constant. 

One fairly new symptom is a crushing pain in my head, with most of the pain targeted over my eyes. Light bothers me a lot too, and sometimes I feel physically sick. It's not often that the nausea takes over though and I am thankful for that. My balance is wonky too. 

I have looked up the new symptoms and it sounds like cluster headaches. I have already been diagnosed as having Migraines, so this latest addition pisses me off. I will talk about this to my pain specialist on my next appointment. My GP is powerless to amend my medication, and he is reluctant to prescribe anything else. 

I dread to think about how I will feel this time next year. Will the pain continue to spiral out of control, OR will one of my Consultants figure out a way to help? I have to keep on hoping. All of us who have been ravaged by this sadistic illness have to keep hoping and to never give up! 

Our Awareness Day on October 7th is all about raising the public perception of this illness, and it is global. There are fantastic places Lighting Up Teal all over the world, including 15 in Ireland. A team of dedicated TN sufferers have committed themselves to creating worldwide awareness, and it is coming along nicely. The full list can be found on the TNNME website. 

TNNME - Light Up Teal 2016

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?? 

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. 

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.  

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! 

Trigeminal Neuralgia Vision Issues!!

For the last few weeks I have had major eye problems. One of the reasons I went to hospital was because I lost the vision in my left eye during a very bad attack When I say very bad, I mean that it was a 10/10. I was so scared, so scared that I was going blind! After some time in A&E and after I was admitted into hospital, I was sent to see an eye specialist there. The vision returned, but it is extremely blurry and I have permanent black spot there. 

There is nothing wrong with my eyes, but according to the Neurologist, the nerves at the back of my eye are under pressure due to the Trigeminal Neuralgia pain. So my Neuro was confident that once my pain was "managed" my eye vision would return to normal. So three weeks later, my vision is still blurry. Not only that, my pain is in the extreme and I cannot understand how I am staying sane. The meds are not working so far, and I am beginning to lose faith in my Neuro doctors. They all keep saying that I have to wait for the medication to start working, well it's been weeks and despite increasing the dosages, there is no change on the pain.

I am trying to remain optimistic, and keeping busy but it's not working so well any more. I am really worried about my vision. Living with this constant hellish pain is bad enough, but having problems with my sight is going to tip me over the edge. I have been on to my consultants and apparently their secretaries are doing their best to get me seen ASAP.

I am curious to find out how many people with Trigeminal Neuralgia, or in my case Atypical Trigeminal Neuralgia have this problem? I have tried looking it up, and rather than reading the medical side of it, people's own experiences would be informative and reassuring. 

I have also been told that I would be seeing a specialist regarding migraines and cluster headaches, but yep, still waiting. Maybe that is the source of my vision problems?