If you read our last blog post, you will have seen that a physical injury caused Shelley to suffer from permanent facial pain. When the bruising was there, everyone could see her pain. But when the bruises went away, Shelley had nothing to show for her pain, in other words, she had an invisible condition.
This is what TN sufferers are up against all the time. There is nothing to show for their pain. Many non-sufferers can’t understand it because they can't see it. How can we have so much pain, but not a mark to show for it? People sometimes doubt the pain. People think sufferers are possibly exaggerating how much pain they deal with, possibly looking for attention, or possibly even just lazy!
People are sometimes judged on how much medication they use. They are even sometimes accused of being drug addicts.
Even doctors (the very people we rely on to help us) sometimes doubt their patients. Some doctors will not give adequate medication to help. When a desperate patient goes to Emergency because they are in so much pain, some doctors haven't even got a clue what Trigeminal Neuralgia is. They don't know what they can do to help, and often turn patients away suspecting they are drug seekers.
Some pharmacists have also been known to turn people away without filling their prescription because they suspect the person is either a drug addict or selling their meds. Does a pharmacist have the right to question a legitimate prescription written by a legitimate doctor for a legitimate patient? Apparently, they seem to think they do.
There is a huge lack of understanding for many people suffering from not just Trigeminal Neuralgia, but many other forms of chronic pain too.
People often suffer in silence because the feel nobody listens or believes them.
This is why we NEED awareness about Trigeminal Neuralgia. We NEED people to believe us. We NEED people to at least try to understand.
So how can we do that? How can we explain the unexplainable?
How can we make people hear those two words Trigeminal Neuralgia and immediately understand what a person is dealing with?
For a start, we need to describe the pain, perhaps using graphic descriptions, so that people will understand. It can be done. After all, we don't have to break a leg to understand how painful a broken bone can be.
The following are some quotes from some facial pain sufferers on how they describe their pain.
- I sometimes feel like there is a sharp knife between my teeth slicing through my gum and right up my cheek. My cheekbone feels like it should have a huge bruise on it. For a long time, I was forever checking in the mirror because I was sure there must be a bruise there. Sometimes my pain builds up and builds up until it feels like my face and head will burst from the pressure. It is as if my head is in a vice, which is being turned tighter and tighter.
- Feels like a hot ice pick stabbing my eye. It is like I am being tazed inside my mouth. I get sharp stabbing pains. Sometimes achy/bruised feeling and an itchy gum.
- When it feels swollen and painful it feels like I have been hit with a baseball bat. And the electric stabs I refer to as "zingers" stabbing in my eye are continuous, like it is being stabbed, pulled out and stabbed again, etc. And I get a vice gripping pain behind my ear.
- Mine is the burn of a blowtorch on my cheek and around my eye, after it has been scraped raw by a straight razor. Then at times the knife stabbing above and below my eye, trying to gouge my eye out. Also suffer from the pain when eating. Just one bite of a salad that I have already taken the chill off, from putting it in the microwave, and shooting pain from my teeth through my head.
- Imagine you have an abscess under one tooth. Now imagine that you crack the one next to it, right down to the roots. And then some idiot hammers a nail through them both. Now multiply that by every tooth on that side of your jaw. And sometimes both upper and lower jaw, and round your eye socket. Occasionally on both sides. The pain comes and goes, in waves, lasting long hard minutes at a time, up to 100 or more times every day. For years.
- On the TN side of my face, I am densely numb. My tongue, lips and teeth, the area around my eye, eyelids and eyeball are all numb to the touch, as is the area of my upper lip and out from it around and to my chin. These areas burn like a 3rd degree burn all the time. When I blink my eyelid feels pinched. My cheek and forehead aches deep inside. My teeth on top are numb but feel like they are being pushed on all the time. Reminds me of the way my teeth would hurt for a few days after my braces were tightened as a child. I get stabbing pains across my temple area and into my eye and forehead that feels like a knife being hammered in over and over several times a day, and constantly some days. Percocet helps that usually but only takes the edge off the pain. Makes it bearable. My head aches like it is being tightened in a vice from the base of my skull up and across my forehead. I can feel my heart beats as pain in my head and it feels hot. Sometimes my scalp feels like it is being peeled off exposing all the nerves to the air. Touching any place around my mouth feels like touching a raw nerve. I get stabbing pains from the top of my forehead into my area so bad I flinch and squeeze my eye shut. My eye waters all the time. This is my every day existence. This is my life.
- Right now my eyeball is burning and feels like I'm giving birth through it! Plus my jaw is freezing cold, which is often how I feel pain. Stabbing, burning, slicing and aching are all words I'm very familiar with. I also sometimes get a sensation of cramping and my face feels like it gets locked.
- My teeth are my main issue. A constant ache and throbbing with tremendous pressure and sharp stabbing pains. Trying to eat is agonizing.
- Sometimes it just plain hurts so bad you cannot tell what part is affected and what is not, it just goes on and on until it all hurts. I told my daughter last night, that it seemed like I had broken all the bones in my tongue.
- I have just been diagnosed with TN. Had a tooth removed last week cos I thought I had toothache. It's a constant throbbing, piercing, stabbing pain behind my eye, ear and jaw/neck.
- My face constantly feels some level of burning, sometimes the heat is on low, other times it is like a blow torch on high, welding my skin to the bone. There is a vice grip-like pressure constantly loosening and tightening at random, but always present. My scalp feels like needles are poking me, and it feels like the corner of my eye and the corner of my lip are being pulled back. When the pain flares up, it feels like someone is jabbing an ice pick in my ear, and like there is an electrical storm in my teeth and gums, striking frequently yet randomly and the level of pain is blinding. At my worst, I cannot speak, I cannot walk, I can hardly move at all. The most painful episodes happen at random; you never know when it might strike. If a slight breeze hits my face, or a cool air contacts my face; talking, chewing, brushing my teeth, leaning forward…or sometimes doing nothing at all, an intense pain ensues. This pain is debilitating, at best, and at worst, it destroys my quality of life.
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'Broken Mind' by Magdalena Esmailzadeh
This painting has been used with kind permission from the artist
Magdalena Esmailzadeh
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Sometimes people don’t explain their pain because they think non-sufferers will not understand anyway.....but they never will understand if we don’t try to explain it.
Sometimes people feel it takes too much energy and gives too much pain trying to talk about it to explain. If that’s the case, print off some information so you can easily pass it on. We have printable information files on our awareness page.
As sufferers, we are the only people who can really make people understand.
We need to make people listen to us.
