Fellow (type A :D) bilateral TN'er here, developed at 26 to boot! Unbelievable. Sadly I'm the fated minutes & hours of attacks person you mention. Everything you say is unfortunate, but spot on. Existing is the main trigger. I'm yet to watch your other videos and see where you're up to, but thank you for doing this, Maria. You know what it's like to be in a position of taking what we can get for something resembling relief or comfort, and while I wouldn't wish it on my worst enemy (would make an exception for Hitler), it's a small piece of assurance, solidarity to know and see the others out there also playing life on extreme/impossible mode. I personally really appreciate your efforts. Especially loving the emojis and snippets of text :)
I am so sorry yours is so persistent. I totally hear you on “existing is the main trigger.” Thank you so much for watching and for your kind words, I really appreciate it. I really hope you can find relief soon. There is hope! I’m happy to answer any questions you may have in the future.
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.
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.
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.
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..
@@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
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.
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!
Fellow (type A :D) bilateral TN'er here, developed at 26 to boot! Unbelievable. Sadly I'm the fated minutes & hours of attacks person you mention. Everything you say is unfortunate, but spot on. Existing is the main trigger. I'm yet to watch your other videos and see where you're up to, but thank you for doing this, Maria. You know what it's like to be in a position of taking what we can get for something resembling relief or comfort, and while I wouldn't wish it on my worst enemy (would make an exception for Hitler), it's a small piece of assurance, solidarity to know and see the others out there also playing life on extreme/impossible mode. I personally really appreciate your efforts. Especially loving the emojis and snippets of text :)
I am so sorry yours is so persistent. I totally hear you on “existing is the main trigger.” Thank you so much for watching and for your kind words, I really appreciate it. I really hope you can find relief soon. There is hope! I’m happy to answer any questions you may have in the future.
I just turned 26 and am Bilateral as well
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.
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.
I’m 26 and just got diagnosed with it. Apparently I’ve had it for a couple years already.
How have you been since you had the mvd?
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.
Hi Maria ! How are you feeling now? Any updates?
I am 23 years old with TN. My neurologist says I'm way too young to be dealing with that stuff.
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..
I hope you can get a lifetime of shock-free days! Good luck if you go through with the MVD 🙏🏽
Update
@@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
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.
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!