Trigeminal Neuralgia Hell.

Unfortunately, I have no good news. I have seen both my Neurosurgeon and Radiologist in the past couple of weeks, and more radiation off the table. My Neurosurgeon was so nice. He is a gentleman and he was completely straight with me. No bullshit. He told me that I may never find any solutions, and I have to make peace with that. I couldn't be angry with him, because I could see the empathy and sincerity on his face. I guess a successful treatment is not in my immediate future. 

I was very deflated coming home from the hospital. A small part of me hoped that my doctors were going to come up with something that will definitely help me. Trigeminal Neuralgia is hell, and it is so tricky to treat. It could take years!! 

At the moment, my pain is off the charts. My left side is between 8-10/10 and my right is between 6-9/10. Both sides are constantly painful, but the pain is more intense in my left side. It is unnerving how painful the right side has become since Christmas. It is slowly getting worse and worse. It is so hard to cope now. 

Simple activities that most people take for granted is virtual impossible for me now. I hate brushing my hair, washing my face and cleaning my teeth. It leaves me with intense zaps and burning pain, and sometimes it makes me cry. Imagine the tears falling down your face when you have TN. It is like acid trickling down your face with constant stabbing pain. It sucks.

The weather is great now, except for the fecking wind. The sun shines, although it's still cold. I could cope with that, wrapping myself up like an onion. The wind is a no go. I can't go outside, and if I do it's just inviting a 10/10 pain level for a day or two. 

My mood has been dark, there are other factors that are contributing to my well-being too, and I can tell you, I am at breaking point. Trying to keep a smile on my face for those around me is exhausting, and I just can't do it anymore. I have a great circle of people around me who try their best to understand. They don't, and it's not their fault, so I don't blame them. I am encouraged to get out and about, as if that will make a difference. 

When you have serious pain, especially Trigeminal Neuralgia pain, there is nothing anyone can do to make it better. That must be so upsetting and frustrating to our families and friends. 

I am also slowly coming off Tegretol. My Pain Specialist wants me to come off it and start on another drug. I reckon that my pain is so much worse lately due to the Tegretol leaving my system. I am going to my GP, and I will tell him I am going back onto my regular dose of Tegretol. I have called and emailed my Pain Specialist's office, asking for a cancellation. 

So much is happening now, and most of it just sucks. We have to keep going though. Don't we? 

3 Diseases More Terrifying Than Ebola - Trigeminal Neuralgia is Listed!!

This video is a must watch. Trigeminal Neuralgia is listed as number 3!!

Trying To Be Positive

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

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

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

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

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

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

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

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

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

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

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

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

Another Hospital Horror Story

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

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

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

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

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

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

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

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

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

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

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

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

Trigeminal Neuralgia Support

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

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

I am not the only one. 

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

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

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

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

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

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

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

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

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

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

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

Light Up Teal

My Battle with Trigeminal Neuralgia

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?? 

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

Beating back the Pain

How much longer do I have to wait for these meds to start working? The pain is more than I can handle at the moment, and I am trying all the time to distract myself so I won't start feeling sorry for myself.

That is my huge fear. Wallowing in self pity doesn't do anything to help. In actual fact I believe that it will make everything seem worse. We all have stress in our lives, and we all have things that need to be done on a daily basis. It doesn't matter if you have children to care for or plants to water, we with Trigeminal Neuralgia need to keep focusing on everyday activities so that the pain won't be so hard to bear. Don't misunderstand me, this pain is worse than I could have ever imagined, and for me it is constant.

There are days that it takes colossal effort to run a brush through my hair and brush my teeth. The point is that these things need to be done. It hurts like a bitch, but unless we warriors keep fighting, this pain will win.

When you suffer from Chronic Pain, a lot of the time your life changes. My life certainly has. Some things that I enjoyed before are gone.. I worry sometimes for my mental health, and I am trying to beat back the pain.

So I am waiting for these medications to take some of my pain away, trying all the time to push myself all the time to make an effort, complete necessary tasks on a daily basis. It is not easy and I fail sometimes, but I don't beat myself up about it because it's ok to fail at times. The fact that I try is the important thing.

It is vital that everyone with Trigeminal Neuralgia  tries their best to think positively, pushes themselves constantly and try to avoid wallowing. I know the pain is demonic, believe me I know.

Until there is more awareness and a cure, we need to fight, educate everyone around us and have compassion for those of us who are having a tough time. Lend a hand, even if it is a get well message. It makes all the difference. 

Bad Vibrations

Oh Monday, here you are again! 

Is that the normal response to what is described as the worst day of the week? Doubtful. When Trigeminal Neuralgia is a fact of life, it often doesn't matter what day it is. 

I can't go out to pubs or nightclubs. Now I could go out and drink coke or 7up, but it's the noise that I can't take. I have noticed it and really has upset me. This rules out concerts and gigs, and that is just not cool. 

I love music, and great music needs to be played LOUD, or not at all. The vibrations set off my pain. That rules out clubs and pubs. Normally I hate the stuff played in nightclubs so that's no great loss, but when all loud music is intolerable, that is soul destroying. I can't put earphones in and get lost in a great song like I used to, in fact I can't put earphones or ear buds near my left ear at all! 

What am I going to do when some of my favourite bands announce concerts, or there is a great gig going on? There is no point logging onto the ticketmaster website, waiting for tickets and the adrenaline of refreshing the page to make sure I am in the queue. The excitement when these tickets come in the door, and the absolute nirvana of having a drink in the bar of a venue, waiting for these fantastic musicians to take the stage. Then when they take to the stage and hammer out the songs that I know and love. The palpitations when I get to see my heroes up close, see them clutch their guitars, grab microphones and belt out their masterpieces. Thanks to Trigeminal Neuralgia, that is all gone for me, and it's not fair. 


It may seem strange that facial pain can stop life like this, and I would have been a sceptic. Vibrations and noise set off my pain, especially loud noises. Even the smoke alarm going off when I burned toast set off an attack that nearly knocked me on my ass. 

Does this affect everyone with TN, or am I in the minority? It would be interesting to know.

Remaining Sane Through The Pain

I have been out of hospital a few days now, and it is seriously awesome to be home. It is just so hard to deal with the pain. Sleep is evading me. I cannot get any rest. Every little task is a struggle. For example, I decided to dust and hoover my bedroom. (No idea how it got so dusty, it was vacant for two weeks). Anyway, after I cleaned a little, I was so exhausted and in so much pain that I had to go lie down. I could barely see, my left arm was completely numb and the pain was excruciating.

My doctors always ask me to rate my pain from 0 to 10. 0 being pain free, and 10 being the worst pain ever. At the moment, my pain level is a 9. Yep, a 9. It is really unfair, and I am struggling to cope.

I was asked a simple question today, and it has been on my mind. Someone I know asked me how was I not driven mad by this pain. I just answered by saying that I didn't know. How am I retaining my sanity though? How are all the Trigeminal Neuralgia sufferers coping with this monster? It would be really interesting to hear other warriors' tales of woe.

I have been ordered to get a lot of rest, my doctors wanted me on complete bed rest, but that isn't possible. Things need to be done, and I go nuts if I sit still for long. I am really independent, and the fact that I can't drive until my vision returns is pissing me off.

Why is this happening to me?


I have filled in my prescriptions and even though my meds have been increased, I am still waiting for my pain to lessen. Remaining upbeat and positive is almost as hard as dealing with the pain. All I want to do is curl up and sleep until the pain goes away.

That would be surrendering though, and I am far to stubborn for that.

My plan for the next few days is to do nothing. Watch a bit of TV, try and read a little and generally keep my mind busy. This will last until the end of the week if I am lucky and I will want to bash my head against a wall. (I have actually considered this during a level 10 attack.) I used to devour books, I could read a 500 page book in less than two hours, now with my wonky vision, I can maybe read 50 pages a day, and that bugs me. Another thing Trigeminal Neuralgia has stolen from me.

What else will TN take from me?

Free from Hospital, still a Prisoner to Pain

I was discharged from Beaumont yesterday. I have been referred to a new neurologist and pain specialist. When this was explained to me I was quite confused, and I thought for a few moments that I was being fobbed off. A doctor explained this to me and now it makes sense. My current and soon to be former neurologist has carried out every test to give me a firm diagnosis and rule out any of the nasty illnesses and disorders that involve the brain. 

I have been diagnosed now with Atypical Trigeminal Neuralgia and Neuropathic Facial Pain, and my new neurologist specialises in this. I will also be seeing a pain management doctor again. I reckon I have a very long path to go down, but at least this is a start.

I have had a nerve block last Thursday that failed. I was so upset, the way some of my doctors were talking this would temporarily take away my pain. I woke up from sedation, felt the burning and stabbing pain, and cried my eyes out. The nerve block made my pain worse, it felt like someone had bashed me across the face with a hammer. My entire left side of my face was swollen, and I looked like death warmed up. The nerve block was partly diagnostic. If I had typical Trigeminal Neuralgia, chances are the block would have had some effect. My doctors were fairly certain of this and the failed procedure confirmed it. 

I am disappointed and saddened that my pain is still as bad as before. I have been given more medications and the dosages have been tripled. Hopefully this will have some effect until I can see my new doctors. Unfortunately these tablets have unsavory side effects. Memory loss, confusion, and bad coordination are just a few. The vision in my left eye is still blurry and my left arm is still numb with the occasional pins and needles sensation. 

So what do I do now? The sad truth is that I am capable of very little. I am so weak, in so much pain, that everyday small tasks are a major battle. Anyone with chronic pain understands this, but everyone else can't possibly. 

I know that my time in Beaumont wasn't in vain. There is a solid plan in action to reduce my pain, it just takes time. 

Hospital Hysterics

Unfortunately this Trigeminal Neuralgia is kicking my ass. I had to go back to Beaumont Hospital on Monday night. The pain was unbearable and I briefly lost the vision in my left eye(my TN side)
The pain is still intolerable. The A&E Department is a complete joke. Every trolley us in use, and there are patients lined up in CHAIRS after they are admitted. I spent an ass numbing 28 hours in a chair. Finally at 2 am this morning I got a bed.

I overheard nurses discussing my case and they described it as 'migranes'. I got very angry and lost it. They didnt know what TN is! Hard to believe. However I do recognise that they are doing their best in impossible and often third world conditions.

Our Minister for Health should hang his head in shame. He needs to go. Nobody deserves to be left in a chair for days or even on trollies. There is no privacy, and no dignity. It felt like I was a freak on show. There were people there that were a lot worse than me. Although the nurses try to maintain someones dignity it is often impossible.

I had a MRI yesterday and I have to get another one today. The pain is hitting my pain threshold and I feel that I am loosing grasp on my sanity. Meds aren't working, there is no relief.

Consistant Agony

There has been no respite in this pain. It has been a few weeks since I fought off a cold, and either my tolerance is waning, or this pain is crossing a new threshold. I am seriously pissed off. I have another two weeks to go before I get to see my consultant again. Two LONG weeks with Trigeminal Neuralgia hell.

My doctor told me to go to hospital if the pain gets too much, but the thoughts of going to the A and E Department tends to bring on a panic attack! I can't go back there, and I am hoping that the consultant has a new plan to deal with this monster.

Pain has had such a negative effect on my life. I think fear, and the fear of more pain is nearly worse. When my attacks get bad, I try and focus, breathe and remember that it will pass. Thinking coherently is really difficult, the pain overwhelms both the mind and the body. Techniques that I have used in the past don't work anymore. I have so many more triggers now too. the slightest breeze or the softest touch are pure torture. It's like I am being burned from the inside out.

I am close to my breaking point. Sleep evades me, and I am surviving on a serious amount of coffee.

Is this anyway to live?

It is 2014, the technology out there is scary. We can send missions to Mars, dive to the deepest depths of the ocean, clone animals and humans as well as all the freaky stuff that can be done that's been kept secret. Why can there be no definitive cure for neurological pain? Tablets only do so much. The side effects are sometimes worse.

Get Stuffed

I have a horrible head cold. It's setting off the trigeminal neuralgia constantly, and it sucks because I never need a reason for my face to explode in pain.

Up until now, I haven't had so much as a  stuffed nose since being diagnosed with TN, which is odd. My mission in life lately is to keep as warm as possible, staying away from wind, breezes and draughts, maybe that is why I haven't been sick all winter.

Having TN is bad enough, but when you add crazy headaches, a sore throat and a stuffed nose into the mix, then it becomes a certain brand of hell. The stuffed nose is driving me crazy, every time I take a breath my face ignites and I can't do anything about it.

Is this what my life is going to be like? I am already afraid of going outside, but now I have to fear the common cold too. As everyone knows there is no cure for the common cold, so I am hoping that if I stay warm, take some cold and flu tablets and drink herbal tea this damn cold will go.

I fell like my freedom is in question. Trigeminal Neuralgia has taken so much away from me already, I don't want to loose anything else. I am afraid of being out in the wind, but with the aid of a scarf it can be done. Now, because of this cold, should I stay inside like a pathetic hermit, or should I get on with life and take every problem as it comes? The pain hits me like bolts of lightening when I am indoors, it happens every few minutes regardless. I may as well live my life.

Having a cold with TN is not fun. The common cold never bothered me before, I would have taken some paracetamol and gotten on with things. Now, it's not so simple. Trigeminal Neuralgia really is pain from hell.

Understanding

What would we do without a support system? I know that I would be completely lost, and without hope. I have a terrific family who really look after me.


I have been active in many support groups online and there is one thing that caught my attention. Trigeminal Neuralgia warriors are finding it so difficult to describe the pain to family and friends, and they feel bereft and slightly betrayed.  


Invisible pain, whether it's TN or any other beastly condition, is impossible to describe accurately. As I have stated before, when you see someone with a visible wound, eg a broken leg, it is so easy to empathise with them. When our pain is internal, nobody can possibly understand.


Fellow TN warriors, think back to the wonderful time that you were pain free. Now imagine that your best friend told you they were in chronic and relentless pain. Would you fully understand? I believe that unless you suffer from pain, you cannot appreciate how life changing it can be.


If you also find that family and friends tend to lose their patience, cut them a bit of slack. They love and care about you, they do understand on some level. Part of your loved ones frustration is helplessness. They cannot bear to see you in pain, but they are powerless to stop it.

I always believe that you should surround yourself with good people that care. One great friend is better than ten acquaintances.


So go easy on family and friends. I know for a fact that TN can change people too. I am Queen Bitch some days. I don't mean to be, but it's hard to smile, laugh and be happy when there are demons dancing under my skin.

If there is anyone out there with a story to tell about their wonderful support system, feel free to contact me. I want to compile a section where we can tell our stories to help each other.

Have a low pain day!