Diagnosed with Trigeminal Neuralgia at 26

I was diagnosed with trigeminal neuralgia 16 months ago at 26 years old. Tune in to see what that journey has looked like for me, what I’ve done about it, and where I’m at today.
If you want to skip around/skip ahead, some highlights are at:
1:46 - why I’m making this video
2:17 - when my trigeminal neuralgia started
3:31 - what else my doctors thought it might be if it wasn’t trigeminal neuralgia
5:00 - why I had to have a spinal tap
6:22 - what triggered my shocks
8:20 - what kind of disease trigeminal neuralgia is
9:16 - the mental health piece
12:02 - the hardest part about trigeminal neuralgia
12:33 - why I decided to take more aggressive measures
13:22 - more on those ^ aggressive measures
13:51 - my unsolicited advice :)
IG: marcoffar
#trigeminalneuralgia #mayoclinic #neurosurgery #microvasculardecompression #thesuicidedisease

[@erics7226]

Defeated and hopeless is the best description I've heard. Got my diagnosis at 36. 11 years later and I'm finally ready for surgery. So tired of the side effects from meds and still having pain.

[@sierrastairs1344]

Hey girl just watched your videos and I unfortunately been dealing with all this pain since 2019, but on my left side of my face, you are spot on with it hurting to eat,chew,laugh,talk,breathe anything. Every Dentist/doctor I’ve gone too had no idea what I was talking about(I’m in the military so it’s a little bit harder finding doctors) but you’re definitely right about the medicines nothing has been working. I’m going to a specialist soon but girl I’m so sorry you had to go through the same thing. I had a dentist in 2019 literally tell me”you’re probably just imagining the pain” and now I have a better dentist who actually thinks I have TN and has referred me to a specialist to figure it out. This pain is the worst.

[@caroljennings67]

One of my two best friends recently died of complications of this disease. She was cleared to have surgery on a Monday and passed away the Friday before.

[@cameronmartin5583]

I’m 26 and just got diagnosed with it. Apparently I’ve had it for a couple years already.

[@vampslia]

How have you been since you had the mvd?

[@casket8530]

I have MS and TN, I was diagnosed last summer.I have seen a neurosurgeon who did see the blood vessel out of place. He believe its a possible treatment. Hoping I can get MVD and get at least a few years of my life pain free, at the least..

[@marcoffar]

I hope you can get a lifetime of shock-free days! Good luck if you go through with the MVD 🙏🏽

[@Iamranasameer]

Update

[@casket8530]

@@Iamranasameer Im on low dose of carbemezapine and started pregabalin as well earlier this year. I’ve been pain free all year. When i feel a flare up, I just take an extra dose until it subsides. No surgery yet, ill cross that bridge when i need to

[@natalyashpota5652]

Hi Maria ! How are you feeling now? Any updates?

[@kommandokeks]

I am 23 years old with TN. My neurologist says I'm way too young to be dealing with that stuff.

[@tiffanybarnes8286]

I definitely want to get MVD. I am seeing no help from these medicines, I feel my body is now immune to gabapentin no matter how much the dosage is increased. Gabapentin helped me March of 2020 when I was diagnosed by my neurologist, experienced NO pain for months. I was put on tegretol and baclofen too. Its just not feeling helpful at all. Mine is bilateral too and I am 18. Ugh this is the worst medical experience of my life. I hope to get MVD and I hope its effectiveness is long term.

[@marcoffar]

I’m so sorry you’re not finding relief with medicine alone. The only thing that worked for me was 1200mg/day of tegretol which is the highest dose you can take. I really hope this video and my other MVD-specific videos can give you some insight into what it was like, the recovery, etc. If you end up going down that route, I pray you find a neurosurgeon who knows what they’re doing and is truly concerned for you. I wish you all the best!