a long-awaited diagnosis, and a weird week.

Monday, 11 August 2014

So, there are certain things I don't like to talk about on my blog. I love blogging, but I also like some privacy; I feel that some things shouldn't be shared. I ummed and ahhed about whether or not to write about this, but in the end I decided I would. Partly to help me get my head around it, but partly because I want to add to the voices of people suffering from neuralgic pain - so difficult to treat, invisible to everyone else, but life-altering.

Hope you don't mind the waffle. Here we go:

I've had pain in my upper row of teeth, spreading up to my temple, on the left side for around eight months now. Assuming teeth problems, I booked an appointment for the dentist, and was given the all-clear - nothing wrong with any of my teeth. She suggested it might be a sinus infection, and to go to the doctors and maybe get some antibiotics.

Surprised (because it really felt like a toothache), I did that. And it didn't go away. I was prescribed more antibiotics. It went away for about a week, then came back again. The doctor suggested I go to the dentist again. Dentist re-confirmed that there was definitely nothing wrong with my teeth.

Basically this has been going on for about eight months. I saw about five different doctors (or spoke to them on the phone) about the same issue. I had all sorts of differing opinions from these doctors, about the usefulness of antibiotics, about the use of nasal spray. One doctor ordered me an x-ray at the hospital to check my sinuses. The hospital said no because apparently they no longer do that. I've had painkillers in increasing strengths, which don't actually take away the pain, they just make me feel spaced out.

In the last week or so, the pain worsened, to the point where I couldn't sleep, eat, or speak properly. I was completely overwhelmed by the pain. On Sunday, I decided I'd plonk myself in the A&E waiting room and see if someone could help me. (At that point, a heavy dose of morphine to knock me out sounded really tempting). As I got ready to go, though, I felt really anxious and slightly wrong about going to A&E.

In the end, I decided to give the 111 service a try again (I had called this number before about the pain, and they suggested I 'take paracetamol' and 'avoid smoking' which wasn't really much use at all, especially to a non smoker). However, bursting into tears on the phone may have convinced the lady on the other end that I might actually need to see someone this time, and my lovely parents came round to take me to the out of hours surgery.

Before I left, I messaged a couple of friends and Chris spoke to his parents. We asked them to pray. My main concern was that I'd go there, be fobbed off by another doctor and be sent away with more antibiotics. I really wanted to know what was wrong with me, and I couldn't bear the thought of another sleepless night due to the pain, and I wasn't sure I had the strength to fight my case. I had lovely messages of support and promises of prayer.

Went to see the doctor. An older man, with graying hair, with a very serious and sombre air about him. He listened carefully to my explanations, and I stammered tearfully into the silence. (I made sure to repeat 'I can't take this pain anymore' a few times). Eventually I tailed off awkwardly as he tapped away on the keyboard.

Then, the doctor reached out for a briefcase behind him and pulled out a book called something along the lines of 'The pocket book of headaches.' He asked me lots of questions, flicking between the pages as we spoke. Then he pulled out a little instrument from the briefcase. It looked like a tiny hammer with a nail on the end. Then he poked me (pretty hard) on the right side of my face and said 'Could you feel that?'

I said, 'Er, yep.' (whilst thinking, 'Duh, you just stabbed my face with a nail.') He proceeded to poke the other side of my face with it.

'Could you feel that?' the answer was no. I couldn't feel anything. My face was completely numb.

'That's your diagnosis.' The doctor had an air of triumph about him, like a scientist who had made a new discovery. 'You have trigeminal neuralgia.'

He went on to explain it and I tried desperately to take it in. It's not easily diagnosed because it's often mistaken for toothache and sinus infections. It comes and goes, which explains my brief relapses from the pain. The hammer-and-nail-thingy test is a sure way to get a diagnosis. I have a damaged nerve, the trigeminal nerve, causing me intense pain. Normal painkillers don't work. Antibiotics don't work. There isn't really a cure for it. It's more about pain management. Some people have it forever, other people find it will tail off eventually, some people have relapses that last years ... etc, etc.

He suggested I dispose of any antibiotics and painkillers I might have left, because they are completely useless, and prescribed me some different tablets instead. Then he smiled and said, 'I happen to have a special interest in head and facial pain, which is why I carry these around with me.' He gestured to his book and the little hammer thing, and I just stared at him.

After thanking him profusely, I practically skipped to the car with my parents as I explained it all. Finally! A diagnosis! After months of going back and forth to my GP surgery and not getting anywhere. And an appointment with a doctor who just happened to know about facial pain! I was praising God for that, big time.

My Dad suggested I write down his name so I could write a letter of thanks or something. He had an unusual name. Let's say its Dr Hill-Smith (it turns out I'm rubbish at making up double-barrelled surnames). I took down his name on my phone so I would remember.

When I climbed into bed that night, my elation turned into worry. A bit of Googling told me a lot of interesting things. For example, TN is known as the 'suicide disease' because of a high rate of suicide amongst its sufferers. Also, it is known as 'one of the most painful conditions known to humankind.'

You can imagine how I felt when I read that.

Two days later I was on the phone to my GP surgery. The tablets he had given me were not working. I was tired to the point of mild hysteria, because every night for three nights, I couldn't sleep because of the pain. I'd drift off, then jerk awake again ten minutes later because I had a sudden spasm of pain. Desperate, I tried to get an appointment with my GP.

The receptionist apologized and said that my normal doctor wasn't in that day. 'We do have a locum available for a telephone consultation,' she said, 'Dr Hill-Smith?'

Seriously? The doctor I saw on Sunday who happened to be good at, you know, facial-pain-related stuff, happened to be at my surgery on the day that I needed a doctor? Awesome.

So now I'm trying to adjust to life with TN. It's not been easy so far. This past week, I've either felt completely spaced out due to the tablets I've been prescribed, or in immense pain. As in, panic-attack-in-the-Matalan-carpark levels of pain. I've been talking to some other TN sufferers online, which helps. I've been learning about the trigeminal nerve and the possibility of having surgery in the future. Tonight, I had such an awful bout of pain that I thought I was going to go mad from it; then, a couple of hours later, it had calmed down to the point of being able to read my baby bedtime stories. Some mornings it's so bad that I can't put on make-up, or brush my teeth; other mornings I feel fine. It's strange, and I feel very wary. I'm always on the alert for when the next attack will arrive. And it's frustrating, because it's not something I can easily explain to people. I am becoming good at hiding how weird and spaced out I feel after taking tablets (I think).

My emotions are all over the place. I'm upset at missing big chunks of time with my loved ones, and I'm upset that I can't do things at my normal pace. I feel that life is a bit chaotic. Some evenings I'm so dazed by the medication that I have to go to bed and leave Chris to sort out the baby. On one particular evening, I slept through Chris getting up with her five times.

Still. I'm praising God for His goodness in providing me with just the right doctor (twice!) Any other doctor might have prescribed me some morphine or something and sent me home. Seeing this doctor has finally given me the peace I needed in understanding what is wrong with me, and set the ball rolling for me to see specialists and get some advice in managing the pain.

I'm also praising God for family and friends, who rally around me with practical support and prayer; I haven't felt alone or afraid, because I'm totally hemmed in with people who care for me. I've been relying heavily on Chris, too, and he has picked up the challenge of work, a demanding baby and a poorly and spaced out wife with ease. As soon as he gets in the door, he takes over without me having to say a word. And I'm thanking God for that every day.

Sorry this is so long. I understand that people around me are suffering with far worse conditions than trigeminal neuralgia. I don't want to come across as selfish or whiny. I also don't want to be defined by it, either. I'm hoping that eventually, when I get used to life with this pain, it will become a background thing about me instead.

I guess I'm just trying to get my head around it. Also, I've found great comfort in reading about people's journeys with neuralgic pain; I hope that maybe my new found companions-with-TN might find the same comfort in reading mine.

I will be back to normal, blog-wise, soon. I've had a few posts going round in my head but they are on the back-burner at the moment. But soon I will be back to normal (I pray!). :)

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