When I was diagnosed with chronic facial pain, I desperately searched around for hints and tips of how to cope with my new life, but I couldn’t find anything, other than odd bits in different medical forums. I wish I’d had someone to tell me these things.. I’ve been there and muddled through it, so you don’t have to..
The medication can be just as bad as the pain
Yes, I have often weighed up whether the side effects of the medication are actually worth the edge they take off my pain. My pregabalin makes me drunk and dizzy, my amitriptyline makes me so unbelievably drowsy and my codeine makes me sick. I would have to say the worst side effect is the dehydration I experience from my night medication – I wake up with a dry ‘hangover’ mouth every morning, my mouth so dry I can barely speak, and my lips are often sore and cracked. Invest in some good lip balms and moisturiser! Sometimes I can’t decide whether I’d rather be in pain or be up to my eyeballs on medication!
You have to be pushy with doctors, appointments, hospitals, clinics, tests
I’ve been quite blessed to have such a lovely GP, but that doesn’t mean I haven’t had to do a lot of ‘fighting’ to get myself through the system. The waiting time on the NHS for a non-urgent referral is currently 18 weeks. I personally couldn’t wait that long to be seen by a neurologist, to get an MRI done, to be seen by an pain management team. With an lot of pushing, phonecards and pestering all the right people, I had an MRI done within a few weeks of my pain starting, a neurology appointment a couple of weeks following that and a pain clinic consultation a few weeks after that. I learned to refuse to take ‘no’ for an answer.
The local pharmacist is your new best friend
The usual waiting time at my local GP practice is around two weeks for an appointment, or if you opt for a phone call from your GP, they will call you once at any time during the morning and if you miss the call, they don’t try again. Some questions don’t actually warrant a chat with the doctor – there are actually plenty of questions that can be answered by your local pharmacist. Your pharmacist specialises in medication; they know which side effects are normal, what other people on the same medication have complained about and tips and tricks for managing on new medications. My GP had never heard of my condition before.. but my pharmacist already knew plenty of people struggling with the same medication I’d just been put on!
It’s completely normal to feel depressed
You’ve just been told you have an incurable condition – you’d be mad to not be upset or depressed about this. There’s absolutely no shame in seeking help for a low mood following a life changing diagnosis. Your GP can either refer you or recommend you for counselling, or you may be able to get couselling at your hospital’s pain management centre.
You find out exactly who your true friends are
You will be AMAZED at people who appear out of the woodwork with support for you. I posted on instagram about my condition, using the hashtag #trigeminalneuralgia and I was immediately private messaged by other people experiencing the same or similar problems. My relationships with my friends and family have been strengthened so much.
Your condition will become an important part of you, but it doesn’t define you
I’m not the girl with Trigeminal Neuralgia, but I am the girl who can’t eat icecream and sometimes struggles to brush her hair.. and that’s okay! I’m also the girl who likes jewellery, cats, Sex and the City and going out to eat! My condition is a part of me, but it’s not all I am.