Chronic Pain Times Two

It's been a very long time since I posted anything. Everything has been very difficult and up in the air. In my previous post I mentioned that I have had lots of new symptoms. I thought I was getting a bad flu, but the dreaded flu never came, but the pains became more frequent, more widespread and a hell of a lot more painful! I went to my GP, and he thought I may have Fibromyalgia. It was a preliminary diagnosis, as I only had the pains and aches for a couple of weeks. I was advised to just carry on, and hopefully the pains would subside. Guess what, they didn't. 

Along with the joint pain, my skin is so sore. Clothes feel so heavy, and I am so weak ordinary everyday tasks seem like a huge burden. I am also constantly tired, whether I get some sleep or not. My GP says that it's fatigue, another damn symptom of Fibromyalgia. I have been to my doctors many times since Christmas, and both doctors in the practice agree that as well as Trigeminal Neuralgia, I do have Fibromyalgia. But, Fibro has to be properly diagnosed my a Rheumatologist, so I am hoping with every fiber of my being that it's not Fibro. I would prefer something else that can be cured with some magic pill. Having one incurable Chronic Illnesses is bad enough, but two?? 

My Trigeminal Neuralgia and Migraine pain has gotten worse than ever before. The intensity is severe, the constant burning on both sides is so difficult to handle. The shocks are quite frequent, there are days when the shocks are only a couple of seconds apart. Those are extremely dark days, and there is nothing I can do, and nowhere I can go for help. I have vowed never to go to hospital again. The more I think of it, the more I realise how badly I was treated while there. My new Consultant lied to me, straight to my face. After I was discharged, I was promised I would be seen as an outpatient within 4 weeks. That was in August 2016. It's now March 2017, and I am still waiting for my appointment. This Doctor has helped to completely destroy my faith in the health system here in Ireland. (Which is not hard.) She lied to me, patronised me and she was quite aggressive and really mean. I was at my most vulnerable while there. I reached out and asked for some help, but all I got was false hope and lies. I will never go back there for help. I have to go back for outpatient appointments, but I will never go to A&E and if I ever do get a letter from her, I will tell her what she can do with it. I am still angry about this, and I realise that it can't be just me. How many other people out there have been treated cruelly in our hospitals?

Living with constant excruciating pain is such a battle. Trying to stay as positive as possible, plaster the fakest smile on my face is intolerable, but necessary. Someone very wise said to me recently, "We are all fantastic liars," and she is so right! What do the majority of chronic pain patients say when someone asks how they are?

Do they say;
"I'm ok,"
"I'm fine,"
"I'm good thanks,"

or

Do they say;
"I feel like s**t"
"My pain is really bad today"
"It feels like Freddy Krueger is tearing open my skull, while battery acid is running down my face and some crazy person has attached jump leads to each nerve."



I bet most of us go for the 1st option, where we lie and pretend that everything is sunshine and daisies. This deception is necessary for most of us, but it is draining and exhausting. 

Stereotactic Radiosurgery (Gamma Knife)

In my last post, I was battling a serious decision. Stereotactic Radiosurgery (Gamma Knife) is no joke. Despite my reservations and my spine chilling fear, I have decided to go ahead with it.

I have weighed all of my options, and I have asked my family and some good friends for their advice. I have debated, an completely freaked out about what I was going to do. As this pain is getting worse and worse, I think I have no choice. The risks for side effects are there, but every single surgery and procedure has their own set of side effects.

After watching some videos and doing some research, I feel more confident. There is a 20-30% chance of success, but I may be one of the lucky ones. I dream about being pain free, or having some low pain. If it lasts for a couple of weeks or months, it will be worth it. 

Some Scary Decisions Ahead.

This morning I had an appointment with a Radiologist in the Oncology Unit in Beaumont Hospital. It didn't go as planned though, and I am left confused and depressed. 

As I have Atypical Trigeminal Neuralgia, I am very difficult to treat. I have a constant burning pain down the left side of my face, stabbing pain in my ear and jaw with electric shocks joining in. This is going on 2 years now and I am losing hope. This morning I went to my appointment and the treatment initially offered is called Stereotactic Radiosurgery My Neurosurgeon told me that the chances of success is between 20&30% and there are some side effects. 

It turns out that there is a whole lot more to this than I thought. The procedure involves a huge dose of radiation focused on one piece of the fifth cranial nerve. This happens to be close to my brain stem which worries me. Apart from a low success rate, I could be left with numbness down the left side of my face, my face dropping, vision problems, the left side of my body could be numb or there could be severe muscle weakness. As there would be an enormous amount of radiation focused on the nerve, it could cause cancerous tumours in the brain in the future. 

I will admit that I am scared. Although the chances of these side effects are low, it is a possibility!

For the chance of a low pain future, is it worth putting myself at risk? What if I end up suffering paralysis? How will I cope and what will my quality of life be? What if I end up numb? I was told that it could effect my left eye and I could get an ulcer there. If something goes wrong, what will I do? 

I have faith in my doctors, I really think they are excellent, but they are mere men. They are not magicians or miracle workers and they have their limits. 

I really don't think that I can go through with it, although the doctors have to have another meeting to discuss my case. They may decide that it's too risky, or that as my symptoms are so atypical there is little point taking a risk. 

I am seriously confused, and I am sad. I was full of hope, dreaming of a procedure that could remove a little of this monstrous, beastly and constant pain. 

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. 

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. 

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.  

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

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? 
  

Radio Discussion on Trigeminal Neuralgia

Liveline - The Joe Duffy Show. This is a discussion from 30/1/13. Well worth a listen.

Liveline TN 30/1/13

Trigeminal Neuralgia Awareness

Today was a shitty day. I don't apologise for the language as this is my blog, and I need to vent. 

This pain is not getting any easier to deal with. How much pain can the body and mind endure? I have reached my limit and I am hoping every day that either my medications will start to work, or this pain would dull for a while.

If you are wondering in disbelief about the pain I describe, let me paint you a picture. 

Imagine that your face is being burned by acid. How painful would that be? Now imagine that pain ALL the time. Not pretty.

Not only does my face burn constantly, but I am getting hundreds of electric like jolts of pain every day. Imagine being struck by lightening over and over again. Not nice. 

Along with the horrific burning and shocks, I constantly feel like I am being stabbed in the ear with an icepick. 

Now I am not writing this for pity or any such crap. I am pissed off. I have went through almost a year of this, and just when I have reached my pain threshold, it gets worse. 

I also don't believe that Trigeminal Neuralgia is as rare as the documentation wants us to believe. I know that there are people out there that have been misdiagnosed. I was in A&E and there were nurses and a few doctors that never heard of Trigeminal Neuralgia. If my medical file wasn't available and if I hadn't insisted that my consultant was informed, I would have been sent home with a couple of paracetamol and told to rest. 

That is just plain wrong. I have read countless accounts of people being treated in that way, and this crap goes on for years! I know that I am lucky to have a diagnosis so quickly and I have had a serious amount of tests and scans that aren't widely available. 

If you are reading this and you feel that you are not being diagnosed properly, speak out. Nobody knows your body better than you. These doctors are being paid to look after you! It is their job. I know that doctors and consultants can be quite intimidating, but they are being paid a lot of dough to fix us. 

We really and truly need more awareness. The blank looks that you get when you say the words Trigeminal Neuralgia will wear you down. I even had some dumbass say to me that that Trigeminal Neuralgia is a fancy name for a headache. I wanted to rip her throat out, and that is me being nice. 

Now I am not normally an angry person, I am quite calm although I have one hell of a temper. 

We are approaching the International Trigeminal Neuralgia Awareness Day on October 7th. Our teal ribbon is available to download on every search engine and it should be shared around all social media sites. Awareness will lead to understanding, funding, and eventually a cure. 

Trigeminal Neuralgia and other forms of facial pain are life altering conditions. How to deal with these conditions on a daily basis is a challenge and one we must win. 

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!