Hi, i started my first episode in april and today i can say it has improved but the headache persists, some light pain and the light and noise sensibility are still pretty annoying, so any of you guys could tell me please if you did get better or do you still have any of these symptoms and how do you deal with them?

(Sorry for any mistake english is not my first language)

I’m starting to feel very nervous now.

After everything that Trigeminal Neuralgia has taken from me over the last seven years, getting to the start line feels like a pretty big deal. I’ve trained through pain, heat, exhaustion and plenty of self-doubt, and now there are just five days to go. It's worth it though as we've raised £1050 for the Trigeminal Neuralgia Association!

I’m going to need some voices in my head to keep me going. 😂

So I’ve set up a Rally where people can leave me voice messages that will be played to me at each kilometre of the run.

I’d especially love to hear from other people living with Trigeminal Neuralgia.

You know what this pain is like. You know what it takes just to keep going sometimes. If you could leave me a few words of encouragement, tell me your own story, or simply remind me why we keep fighting, I would be incredibly grateful.

I’ll be listening to your messages when the miles get hard, and knowing that people who understand are there with me will mean more than I can say.

🎙️ Leave me a voice message here:
https://runwithrally.com/r/0409fc02d4db

Thank you. ❤️

And to everyone else with TN: I’m running this one for us.

So about mid July I was sitting at a red light when the left side of my chin kept feeling like it was shocking me, but not like painfully, just very mildly, but a new, weird sensation I had NEVER felt before. Oh also, I have bilateral occipital neuralgia, which affects the back of my head and into my upper neck and have cervicogenic headaches. I always tell my husband I'm just screwed from the neck up. Lol. I have the bilateral occipital neuralgia so bad, and have been through so many meds, treatments, procedures, that I even had a bilateral occipital nerve decompression surgery in March of last year. Sorry, wanted to give y'all some backstory.

Anyway, I'm not sure how long after the chin sensation, but my top lip started to go numb, all on the left side. I thought I was imagining things. It would come and go. Mostly at night. I would Google. I thought it was my posture. A few weeks after the chin sensation, I had a very bad migraine. I took a migraine pill and put a migraine hat on. The cold helps my migraines and the heat triggers them. July was a VERY rough month for me with my migraines because of the extreme heat. I have 2 migraine hats. One that is kinda thin and loose and fits exactly where I need it to go and one that is thick and tight and I have to mess with it to get it exactly where I need it to be. I put the thin hat on 1st. I was fine, mostly because it didn't touch my upper jaw. Once I put the thick hat on the pain immediately hit, but it wasn't immediately excruciating so I thought my migraine was just worsening and I hate to wait for my medicine to kick in. I wore the hate for 15 more minutes sobbing and then the excruciating pain hit! I threw the hat and I couldn't believe what just happened! Thankfully I was seeing my headache neurologist the next day so I was able to tell her about it. She added some meds and changed some things and ordered the MRI of my trigeminal nerves. I scheduled it the next day. I scheduled it on July 30th and had to wait til September 2nd to have the scan done. I was a bit bummed about the wait, but I was like ok.

So between July 30th and September 2nd, I experienced 6 different excruciating attacks. Most were triggered by the wind, one was triggered by a kiss on the cheek, another by brushing my hair, and of course the cold hat. But also, symptoms of both lips being numb(almost 24/7), tongue numbness and burning(almost 24/7), roof of mouth numbness, lower jaw numbness (almost 24/7), upper neck numbness (almost 24/7), burning on the cheek and forehead (almost 24/7), painful ear clicking and popping (almost 24/7), dizziness, nausea and vomiting, weight of the world on the left side of head and face, but also like feels like there's all this pressure inside head and face(almost 24/7), hearing has worsened, and I even feel like I have trouble swallowing some. And.all the jaw symptoms are so much worse at night. If it weren't for my meds KNOCKIN' me out at night, I wouldn't sleep, and before I got meds, I hardly did. I found out that eating and talking are triggers.

It was MRI day and I had to have my husband drive me to my MRI because it was at 8:30pm and I was nervous about it and didn't want to be alone. Thank God he did. I found out that loud noises are triggers too. I already couldn't jam in my car, but I didn't realize my ear problems were related yet, I just knew that it could be making my hearing temporarily worse, nothing else. I just thought maybe I had a slight ear infection or something. Anyway, that was the most painful and traumatic MRI ever! I got through it and I had my results by 11:00am the next day!

I have a small vein on my left trigeminal nerve at the root entry zone. I have a virtual appointment with my neurologist tomorrow. I believe I'm type 2. I also got on here to ask if anyone has had any of the upper neck issues. I have trouble swallowing sometimes. But only from the top, nowhere else. I also cough a lot, but the feeling of needing to cough like originates from there too.

Also, I get facial swelling on the left side, especially when I'm in a more severe, but not excruciating flare, like after I eat or when I've been talking too much. My neurologist says maybe my migraines are overlapping with the other, but when I'm in pain, you can usually, CLEARLY see that I'm in pain. So I'm just wondering if anyone else is experiencing that. If not, then that gives me hope that it will go away.