The question I hear the most at the moment is “can I have the COVID jab? I have trigeminal neuralgia. Will it cause a flare up?”
I have lived with atypical trigeminal neuralgia on my left side for almost 6 years now and I received my vaccine against coronavirus a few weeks ago.
I work with the TNA UK and the neurologists there have stressed the importance of receiving the covid vaccine when you are eligible to do so, because the consequences of getting coronavirus will be much worse for your neuralgia than the side effects of the vaccination.
My vaccine didn’t cause me to have an attack and most people I have come across have, very fortunately, been in the same position of having the usual side effects, but no adverse reactions in terms of their pain levels.
However, I do know a minority of people who have said that the side effects of the vaccine caused their TN to flare up. For some people, the flu like symptoms you get after a vaccination may cause your face to hurt. It could also be triggered by the stress of suspecting an attack, or it could also be just terrible timing. I know my TN doesn’t always follow a pattern. Sometimes, I can do nothing to trigger it and it will show up with full force!
Here are my top tips for getting the vaccine when you live with TN..
- You are given a date for your vaccine in advance, so you are in the unique position of being able to prepare for the flu. You might not get any side effects, but if you do, you can be ready for them!
- Discuss your concerns with either your GP, your neurologist, your pain management clinic or the TNA UK who have a free telephone helpline and email helpline
- Don’t be afraid if you feel you need to increase your medication if you are able to (only as advised by a doctor)
- Get your house nice and tidy the day before your vaccination and stock up on soft, easy foods – so you can do only what you need to do on the day
- Try to stay as stress free as possible, in whatever way works best for you. I find that stress makes my pain levels much worse, so I just thought of my vaccine as ‘something that needs to be done’ and booked it for the first appointment of the day, so it could be out of the way
- Report your side effects of the vaccine here if you have had your vaccine in the UK, so that the NHS have a more accurate record of how the drug affects different people
- If your side effects do not settle down after 2 days, call the NHS on 111
Let me know of your experiences with the vaccine ♡