Is Pain All That There Is?

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

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

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

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

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

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

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

Sleep is certainly my nemesis of late. 

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

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

Meds Meds Meds

Well after seeing the pain specialist in hospital during the week, I am on a new cocktail of medication.

I have been taken off Lyrica and instead put on Gabapentin and Baclofen. So my new regime is Tegretol, Gabapentin, Baclofen, and Amytriptyline.

I hope that there will be an improvement, even a small one that will help. This pain is getting progressively worse as the weeks go by and it is frightening.

The pain specialist is brilliant. He knows what he is talking about and even though I have heard fantastic things about him, I decided that he is worthy of the praise. It's the same guy that performed the failed nerve block in hospital. He is hesitant to do any procedures and surgeries yet. The reason mostly is that my TN is Atypical. He is hopeful that we can control the pain. He is not patronising, and he really understands what living with chronic pain is like. He has enough empathy to relate to his patients and believe me that is invaluable.

There is nothing worse than dealing with a Dr. Doolittle that is sarcastic, crass and rude. I dealt with such a person while in hospital, and it took a tantrum (okay, it was a big tantrum) and a chat with the ward sister for him to cop on and treat me like a human being in pain, rather than a child on the naughty step. 

It's amazing the pain that the human body can take, and how much pain the body can produce. I am fucking sick of it.

I have been on this new medication combination for a few days, and it is not nice, the side effects are quite bad, I get confused and lose my balance very easily, and I have pains and aches in my hands and feet. Unfortunately, my eyesight is yet to improve, but I am still hoping everyday that the pain will ease a little and my full vision will return. 

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!

Top 10 Things To NOT Say To Someone With A Chronic Illness

Pain Nightmare

Do you know what? Living with Trigeminal Neuralgia is a nightmare. Every moment of my life over the past few weeks has been completely overruled by pain, and the pain levels are becoming too much to bear.

I also have a new symptom which is fucking fantastic. Yep, loosing the vision in my left eye for a few seconds at a time. It is frightening, and I am worried. My doctor insists that if it happens again I am to go STRAIGHT to Beaumont, as there are a variety of things that can also cause it.

Seriously, hospital? Not likely. Does anyone understand the state of the Irish hospitals?

Let me explain.

Sitting in A and E for roughly eight to twelve hours, then I am normally admitted (lucky me). Once admitted, routine blood tests and a variety of other tests are done, and then you are sent to sit on a chair. Yes, you heard me, A CHAIR. Let me tell you, if you have spent the night in excruciating pain, sitting in a chair, a trolley is luxurious. Oh and by the way, this is inside the A and E department, and there is NO PRIVACY either. My last time in hospital, I was in A and E for two days before being sent to a ward. Once I got to a ward, I received excellent care, and my neurology doctors were great. The nurses in the A and E department were great too, but severely understaffed.

So after my experiences I am extremely hesitant to go to the hospital, but if I really feel like something isn't right I will have to.

This is just one more thing to stress about. When you suffer from trigeminal neuralgia and chronic pain, more stress is the last thing that is needed. Stress and worry are major triggers for me, so it is a vicious circle.

I am, at this moment hoping for some pain relief. (Meds still are useless) I have read about remission and I am trying to imagine a few hours without pain. Seems like a dream.

Side Effects

There are certain medications that have been documented as having a huge impact on the pain of Trigeminal Neuralgia. As no two people with TN have the very same symptoms, medications will effect everyone differently.

I have tried lots of different ones. Tegretol was the worst. I did notice some improvement with pain, but the side effects were ridiculous. I started off on a fairly low dose, but it did not agree with me. My GP informed me that it might take a few weeks for my body to adjust to Tegretol, but after two months the side effects were worse. I couldn't drive, I was always stumbling, my balance was gone, I was talking complete nonsense most of the time and my memory was bad, really bad. If I needed to drive somewhere, I couldn't take my tablets, or I had to wait about 3-4 hours after taking them to drive.

That is no way to live life.

I was taken of Tegretol and having already tried Lyrica and Baclofen(that made me collapse), my neurologist wanted to give Lyrica another try. As I have mentioned before, I have been on a very low dose and I am slowly increasing it. There is to date, NO DIFFERENCE in my pain. Over the counter and prescription painkillers have little effect on my Trigeminal Neuralgia pain, they make me sleepy so I don't take them. I am also afraid of becoming dependant on them.

Are the medications worth the side effects? There was a subtle difference on Tegretol, but my stupid body can't tolerate it, even in small doses.

My GP knows that I am sensitive to meds, and I highly am allergic to quite a few, so he is very reluctant to change my meds. I am STILL waiting for an appointment with the pain clinic in Beaumont Hospital so hopefully they will find a miracle drug for me.