I’m sure GPs must have patients coming in all the time complaining of a terrible pain. Of course a terrible pain to one person might be just a mild discomfort to someone else. I guess the GP should respond, “Okay, on a scale from 0 to 10, where 0 is no pain and 10 is the equivalent of having your leg amputated without anaesthetic, where would your pain be on the scale?”
Well I had what I would class as an 8 on this scale recently. It started as a slight discomfort between my upper jaw and right ear for a couple of weeks. Then one afternoon, I bit into a tangerine on the right side on my mouth. Immediately I experienced an unbelievably intense searing pain behind my right ear. Like someone hammering at a sharp pin behind my ear but it’s hard to explain the intensity of the pain without feeling it for yourself. I dropped to my knees, coughing, clutching the chair leg and groaning with pain. It probably lasted for half a minute before it passed. I got up and eventually recovered. Probably the worst pain I had experienced in my life.
But what was it? I had bitten into something but the pain was behind my ear. Doctor or dentist? I saw them both. The dentist was pretty sure it was trigeminal neuralgia but the doctors I saw weren’t sure. I was treated first for an infection of the salivary gland, then a blood test to rule out polymyalgia rheumatica. I then saw an ENT specialist who said it might not be trigeminal neuralgia and referred me for an MRI scan. The dentist referred me to an oral dentist in the local hospital who diagnosed a temporomandibular joint dysfunction. I had already googled my symptoms and I’m pretty sure it was indeed trigeminal neuralgia. In the meantime, unfortunately I found that biting into meringue also caused the same intense pain.
So by avoiding acidic or sweet foods, I could avoid the busts of pain. Problem is the intense pain then started to occur in short bursts when I was talking, chewing food, turning my head, or even just going to lie down. And finally I got short sharp jolts of pain just when walking around because the nerve is so sensitive to movement. I asked the GP for painkillers for neuralgia and I was initially prescribed 20 mg of amitriptyline daily. That had no effect so the dose was increased to 75 mg daily together with co-codamol and in 2 weeks the pain was almost gone. But it was a worrying time wondering if anything was going to work or if I’d just have to learn to live with it. I have to keep taking the medication for some time to come and I haven’t received the results of the MRI scan yet.
So why the blog post about it? Well, if you ever bite into an orange or meringue and get a searing pain below or behind your ear which brings you to your knees, you might now have some idea what it might be. Just don’t expect your GP to reach a diagnosis straight away. I guess they don’t come across it very often. It affects about 27 people in 100,000. Perhaps when you say you have a terrible pain it’s hard for them to imagine just how severe it is. Thankfully, the right medication and dose may relieve the pain in a few days. There’s a really nice cartoon explaining trigeminal neuralgia here.
Then this thought occurred to me. Just what did they do in years gone by before the advent of the range of medications we have today? It really is a debilitating condition. You can’t talk, chew food, turn your head or walk around without jabs of pain. And I’ve no idea how long the condition would last for. I wonder if they had herbal remedies for this in days gone by? I bet they didn’t. We’re so lucky these days!
Or perhaps you’re reading this and medication hasn’t worked for you in which case I’m really sorry, I know what you’re going through.
Have you ever experienced trigeminal neuralgia? Did you have trouble getting a diagnosis? How were you treated and how long did it last for? Did it recur? I’d love to hear about it in the comments.