Hour by Hour, Day by Day.

My Stereotactic Radiosurgery has failed. I know it can take some time, but I've given it enough time to work. I'm disappointed, and sadly my pain is worse than ever. 

On my left side, I have Atypical Trigeminal Neuralgia, but now I have pain on my right too. Unlike the left side, the pain comes and goes on my right, which means I have TN type 2 on my left and TN type 1 on my right. What are the chances that I would get this hellish condition on both sides? 

The past few days have been really tough and sleep has been practically non existent. Sometimes I grab a few hours sleep here and there, but I can't sleep now. The pain is just too extreme, I literally want to bang my head off the wall. Yesterday I wanted to rip my face off. It's a real worry too, my mood is getting darker and darker as the pain gets worse and worse. 

Finding the positives in life is difficult. I look around me and I see my cat and dog snoozing happily, and I envy them. Writing this is hard, I know what I want to say, but the bright screen is seriously hurting my eyes, sending sharp stabs down my face. If I didn't know how to type I would be in trouble. 

I have said this before and I will say it again. We need a cure. Living like this isn't right and it isn't fair. We are pumped full of medications, used as guinea pigs to see what, if any procedure will work, There has to be a universal solution, they can walk on the moon and dive to the deepest depths of the ocean, yet fixing us is not even on the World Health Organisation's list of priorities! The Light Up Teal campaign is well underway, and we will change that. 

Light Up Teal for TN - TNNME

Taking it hour by hour and day by day is how I survive and I am surprised my sanity is still intact. Will it be intact in a years time? How about 2 years?? 

Petition to the World Health Organisation - TNNME- Trigeminal Neuralgia Petition to the World Health Organisation, please sign and share. 

We Need A Cure -- Seriously.

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

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

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

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

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

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

Pain, Pain and Even More Pain!

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

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

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

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

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

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

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

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

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

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. 

Worst Pain Ever

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

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

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

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

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

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

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

Pain, Pain and More Pain.

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

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

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

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

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

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

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. 

Limitations and Lethargy

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

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

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

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

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

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

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

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. 

Trigeminal Neuralgia Clip

http://edition.cnn.com/2013/10/07/health/trigeminal-neuralgia-awareness-irpt/index.html

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. 

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

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. 

Really Bad Day

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

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

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

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

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

Trigeminal Neuralgia and Migraines

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

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

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

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

They are:

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

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

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

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

Here is the link to Migraine ireland's Website

Migraine Ireland

Dr. Kevin Yao's feature on CBS News discussing Trigeminal Neuralgia.