Pregnancy with Trigeminal Neuralgia
Pregnancy does all kind of strange things to your body. There are the things that are well known – your feet swell, your hips widen, you can get the most awful morning sickness and a crazy sensitive sense of smell. Then there are the less well known – the fact that your hair doesn’t react to colour the same at the hairdressers, itchy skin and your runny nose. Most things are explained away by ‘hormonal changes’, or “that just happens during pregnancy” and you don’t tend to look any further into them.
Pregnancy put my trigeminal neuralgia into a few months of remission, but not everyone is so lucky. Some people experience pain worse throughout their pregnancy. I have always said that hormones play a big part in my pain levels and I was expecting my pain to be worse than ever, because I get higher levels of pain when I have my period.
Luckily, my pain seemed to take a back seat, whilst all the other pains of pregnancy took ahold of me – my little girl was doing her best to distract me from my face hurting!
When I found out I was pregnant , I stopped taking codeine and told my doctor the same day. If you are on any daily medications for your TN, it is recommended you keep taking these and speak to your doctor right away to discuss whether any need to changed.
At your booking appointment, the midwives will ask about any other health conditions you have. I told them about my trigeminal neuralgia and my eye disease.
They arranged for me to see the opthalmology department, which was handy, because all my appointments had been cancelled due to the pandemic, who reported back to the midwives that.. yes, still have a rare eye disease with no cure, still no improvement on that!
The midwives then got me in for an appointment to discuss my TN with one of their consultants, who also wrote to neurology for their advice.
I always have a really strong urge to say that my pain isn’t a problem, in most situations. Even if it is. I focus really hard on the ‘I can do this’ and sometimes I forget that I can’t actually do this. When the consultant decided that it would be in my best interest to have an assisted birth, I didn’t like the sound of this.
The reasoning behind it was that they didn’t want me to become more stressed than I already would be, therefore trying to avoid a stress related flare. They recommended that I only ‘push’ for a short amount of time, before they would then use forceps or ventouse to assist me through the end of labour.
I was quite upset after speaking to the consultant. I didn’t want an assisted labour – I wanted either a natural labour, or a c section. I didn’t like the thought of forceps, I just thought of them as medieval tools and I couldn’t get that out of my head. I rang one of my best friends really upset after the consultation, who talked me down as much as possible and said I should just wait to see how I feel at the birth plan appointment, how I felt in a few weeks and reminded me that as long as the baby came out safely, it didn’t really matter what happened during the labour.
I also later considered that anything could happen during labour. I might need an assisted birth anyway (spoiler alert: I did need one anyway for my pelvic girdle pain!) so at least it was good to know what to expect in advance.
As it turns out, I never made it as far as my birth plan appointment, because I went into labour 5 weeks early and gave birth to Blake a few days before my scheduled appointment, but she was born safely after a really quick labour, without a facial pain flare up.
So my advice for anyone who is pregnant with trigeminal neuralgia?
Speak to the midwives about your options for your birth plan. Tell them about your TN, even if you are currently in remission, just in case!
If you take any medication, make an appointment to speak to the GP as soon as possible about what is safe for you and the baby in pregnancy. Do not feel you have to stop taking any prescribed medication, unless advised by a medical professional.
Believe that sometimes, the doctors do know best. I had a hard time accepting the idea of an assisted birth, but was really glad of it during my labour.
On the other hand, stand up for yourself if you believe you are not getting the help you need in regards to your TN. Your baby is important, but you need to be able to function as well.
Schedule in an extra appointment or phonecall with your neurologist or pain clinic to discuss any concerns about managing your TN during pregnancy. Ask your midwives or consultant to write to them to arrange this if you feel you’re not getting anywhere when asking.
Enjoy medical appointments that aren’t about your neuralgia. It was so lovely to attend appointments that sometimes included being able to hear a little heartbeat, or see my baby wriggling away on a scan!
If you are interested in reading what happened during my birth story, you can find it here.
If you would like to read about life with a newborn and chronic pain, please click here.
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Thank you for sharing 💛
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Thank you for blogging. I am currently pregnant and my TN pain has flared up tremendously. I am not having any luck getting my pain under control which is making my first pregnancy very depressing. It’s so bad I want to end life some days but then I think about my child and smile through the pain. I was told I would probably have a scheduled C-section because of my size and my facial pain. I don’t have a midwife.
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So sorry to hear this Kristy 😦 x