I have had trigeminal neuralgia for 6 years and I’ve been off medication for a couple of years now. This doesn’t mean I’m pain free, I just struggle to cope with the side effects of the medication.
I’m often asked how I cope with my trigeminal neuralgia without medication. In a flare up, not very well. On a daily basis, pretty okay actually. I’m still in pain every day, but I get by and, even though I don’t have the medication to take the edge off the pain, I don’t have all the bad bits like the brain fog, the weight gain, the hair loss, the drowsiness, the dry mouth or the sickness.
Choosing to be in pain isn’t an easy choice. It’s the impossible choice, made only slightly easier for me by the fact that the medication didn’t ever completely take the pain away for me. If the medication had completely relieved me of pain, I can’t say whether I would put up with the side effects or not.
I’m not a medical professional and I’m not telling you to stop taking your medication. However, if you choose to manage day to day without medication, I thought it might be useful to write about how I cope.
I don’t do too much. I might sound incredibly boring, but it would be dishonest of me to pretend I have a completely ‘normal’ life. I can’t just go around like anyone else, wherever and whenever I want, with my face hurting. I have to go to bed early, I can’t go out in the cold. Sometimes I need to cancel the rare plans I’ve made. It’s easier for my pain levels if limit the amount of things I do. I can still do things, I just can’t do everything.
I take Zapain (prescription codeine/paracetamol) when needed. I am not technically completely medication free, as once or twice a month, I have to rely on codeine to take the edge off the pain. I’ve written about this on another blog post, which you can read about by clicking here.
I stay in a temperature controlled environment as much as possible. I actively avoid air conditioning and breezes, going out in the cold where possible and any drastic changes in temperature, as these cause me the most pain. I realise this isn’t possible for everyone. I work mainly from home and I currently have a young child, so I can get away with staying in a lot. As my daughter gets older, I’ll need to leave the house a lot more, in all weathers. My job may change in the future, so this might mean working out of the house. At the moment, I’m very privileged to be able to control the temperature around me most of the time.
I brush my teeth at different times throughout the day, not necessarily when I first wake up, or right before bed. As to not repeat myself, I’ve written about this before and you can read the article by clicking here.
Know your triggers. It’s not always possible to avoid your triggers, but being aware of what they are can help you stay prepared and will hopefully reduce the amount of flare ups you experience.
I try to stay as stress free as possible. This one is so difficult. I try to stay relaxed and calm. Stress tends to flare up my pain. This links back to not doing too much too and knowing your triggers. I want to avoid anything that’s going to cause me to get worked up, or cry, because these two things cause me to have attacks of pain. I avoid stress by offloading on a friend, trying to be honest about my feelings as much as possible and admitting when I’m struggling to cope. I used to keep my feelings to myself, but I think I’m learning that I need to rely on someone else sometimes.
I practice body control pilates. I do not believe that exercise can cure trigeminal neuralgia, but I do believe in time for yourself and the hour a week I spend out of the house at my pilates class has done wonders for my mental health and stress levels. I was advised to take up pilates following the birth of my daughter for pregnancy and birth related complications. I didn’t start the class for my neuralgia, but I have seen the benefits. When you practice body control pilates, you focus on the different areas of your body, on balance and meditation. It takes my focus, completely, and it’s very gentle exercise too.
Accept that you will have bad days. When you choose not to take a daily medication or have a treatment for TN, you have to accept that you will definitely have painful days, as you’re not actively doing anything to mitigate the pain. That doesn’t really make the pain any easier, but maybe making a conscious effort to accept the pain makes a small difference to my mental health sometimes.
Review your personal situation often and honestly. I came off medication for the first time years a few years ago, then after a few bad flare ups, I went back on medication again for about a year. I’m happy to be fluid with my choices about medication, as and when I need to. It isn’t admitting defeat to go back on medication if you need to.
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