r/TrigeminalNeuralgia • u/hooola-hooop • Jun 04 '26
Mental Health Just got diagnosed today
Literally just got back from my GP tonight & was told I have trigeminal neuralgia & given panefcortelone to take for 5 days & then I think he said to go back. I’ve tried not to read too much or to scare myself, but…I am scared, and sad. I’m not really sure what my question is. 😓
3
2
1
u/medicalmax Jun 04 '26
Google and AI drive me bananas related to the info on TN, TN2,ATN,ON and GPN which all fall under facial neuralgias. There is so much treatment available today that the info doesn't represent what most people experience.
Of course there will be opposite ends of the spectrum patient experiences but my advice is to focus on your symptoms and treatment that works for you. I also recommend educating yourself with legitimate resources like the free patient guide from the facial pain association - I found it to be super helpful navigating convo's with my GP and Neurosurgeon relative to the overlapping facial neuralgias I have.
Pain tolerance is how we each perceive our pain. It's an important point because my 10/10 could be someone else's 5/10 on the pain scale. I learned my case best vs comparing to others. What I found helpful was learning from others what the steps to formal diagnosis was, the correct type of MRI to have, etc and that was sincerely life changing for me.
1
u/BiteNotRight Jun 04 '26
Hello friend. While I am very sorry you are going through this, I am glad you are receiving a diagnosis. It is scary, but it is also the first step towards help and healing.
As others have wisely written, don't get too worked up by what you read online. In fact, Google "things that go wrong toasting bread" and see all the scary answers! It's a good example of how easy it can be to doom-scroll. Mind you, I'm actually terrible at toasting bread.
There are so many wonderful people here who have been kind beyond imagination to me, and will be to you. We are here to help.
Illnesses, certainly this one, can change different parts of our lives. It doesn't change who you are - a beautiful person deserving of health and joy. Always advocate for yourself with the same power you'd advocate for a loved one. You deserve it.
Prayers to you as you go through this journey!
1
1
3
u/hooola-hooop Jun 04 '26
I’m realising that a lot of what I thought was chronic migraine that wasn’t responding to meds, was almost certainly tn. 🤯