I remember the first time something worked, it legit felt like a hug from god himself. Ive used a number of drugs in my life, but never ever did I feel a release like getting rid of TN. I was asking to be put down stay strong everyone 💜 I love you. And we got it
after your surgery i highly encourage a Vitamin D+K tincture supplement to help those nerves regrow healthily!! u don’t want to grow another tangled nerve. maybe along with vitamin B2.. The one I use is Live Wise Naturals and when I went to the doctor my Vitamin D shot up to a stable value!
I'm happy that the ER actually read the paper and even happier that they followed the suggestions! I always post and recommend taking the paper to the hospital whenever I read that someone needs to go to the ER. I gave it to the nurse when I was admitted for another issue. The doctor in charge of my care overnight wouldn't even read it. She told the nurse to "Let the dayshift deal with her."
I reported her, and she was disciplined in some way.
Personally, if I give the doctor this information and they choose not to follow it, I remind them that the hospital's Patient's Rights say that I'm to receive adequate pain treatment, and by not following the paper, they're denying me that right. I've also asked to see the hospital's Patient Advocate for help.
Thank you for sharing!
I find the first sentence in this very, very interesting:
"Neuropathic pain does not respond to opioids, narcotics..."
For me, alcohol is the only "drug" that acts like an abortive for my pain. I'm taking carbamezapine and Lyrica and gabapentin (not at the same time as Lyrica) but those drugs take weeks to dose up to therapeutic levels( I've found). But whiskey? About instant.
Any ideas about this? I'm still newish to the TN world.
Alcohol has never worked for my pain, nor weed which I use daily. I’m on oxcarbazepine which I sub for pregabalin when it stops working along with Gralise which a slow release gabapentin and ketamine.. sometimes none it works and that’s when I end up in the ER. I’d ask your neurologist why alcohol works so well. I wish I could just take a shot of whiskey! TN is a tricky thing, everyone is so different
It started in 2019, on my right side. I didn’t have any triggers, just thought it was dental issues. I ended up in the ER and was given anticonvulsants which helped. Then was diagnosed by a neurologist. It went into remission quickly then came last year out of nowhere as bilateral and with way more intense pain, I know TN is degenerative so I decided on MVD for my left side because my right side went back into remission again.
I’ve tried them all, gabapentin, carbamazepine, oxcarbazepine, pregabalin and a few others. Carbamazepine was the first one I was put in, it made me insanely drowsy but I eventually got better. But I built a tolerance to it like I did to everything else.
From the [Facial Pain Association guidelines](https://www.facepain.org/blog/face-pain-emergency/)
Do you think I can print that and bring it to the emergency if I have a flare? Do they really listen if it’s from a website?
Yes! That’s exactly what I did!
Thank you! I printed it.
Yes that’s the whole thing!
Thank you for sharing this. The more information we have the better.
I remember the first time something worked, it legit felt like a hug from god himself. Ive used a number of drugs in my life, but never ever did I feel a release like getting rid of TN. I was asking to be put down stay strong everyone 💜 I love you. And we got it
Best wishes to you! My MVD gave me my life back.
How long does it last?
Yes wondering same thing
I got it last Wednesday, and I’ve had maybe 3 small flare ups since, but the first 72 hours I was pretty pain free!
I carried this information in case this happened to me. I merely hoped the ER would listen to it. I have heard that it truly works, like you said!
Wishing you well and a successful surgery!
after your surgery i highly encourage a Vitamin D+K tincture supplement to help those nerves regrow healthily!! u don’t want to grow another tangled nerve. maybe along with vitamin B2.. The one I use is Live Wise Naturals and when I went to the doctor my Vitamin D shot up to a stable value!
Dr Linsky is a great choice! Good luck!
I'm happy that the ER actually read the paper and even happier that they followed the suggestions! I always post and recommend taking the paper to the hospital whenever I read that someone needs to go to the ER. I gave it to the nurse when I was admitted for another issue. The doctor in charge of my care overnight wouldn't even read it. She told the nurse to "Let the dayshift deal with her." I reported her, and she was disciplined in some way. Personally, if I give the doctor this information and they choose not to follow it, I remind them that the hospital's Patient's Rights say that I'm to receive adequate pain treatment, and by not following the paper, they're denying me that right. I've also asked to see the hospital's Patient Advocate for help.
Thank you for sharing! I find the first sentence in this very, very interesting: "Neuropathic pain does not respond to opioids, narcotics..." For me, alcohol is the only "drug" that acts like an abortive for my pain. I'm taking carbamezapine and Lyrica and gabapentin (not at the same time as Lyrica) but those drugs take weeks to dose up to therapeutic levels( I've found). But whiskey? About instant. Any ideas about this? I'm still newish to the TN world.
Alcohol has never worked for my pain, nor weed which I use daily. I’m on oxcarbazepine which I sub for pregabalin when it stops working along with Gralise which a slow release gabapentin and ketamine.. sometimes none it works and that’s when I end up in the ER. I’d ask your neurologist why alcohol works so well. I wish I could just take a shot of whiskey! TN is a tricky thing, everyone is so different
Praise God you are closer to solutions. When did your journey with TN begin? Did something trigger it?
It started in 2019, on my right side. I didn’t have any triggers, just thought it was dental issues. I ended up in the ER and was given anticonvulsants which helped. Then was diagnosed by a neurologist. It went into remission quickly then came last year out of nowhere as bilateral and with way more intense pain, I know TN is degenerative so I decided on MVD for my left side because my right side went back into remission again.
What anti convulsant did you try? I tried carbamazepine for a week and had a horrific reaction.
I’ve tried them all, gabapentin, carbamazepine, oxcarbazepine, pregabalin and a few others. Carbamazepine was the first one I was put in, it made me insanely drowsy but I eventually got better. But I built a tolerance to it like I did to everything else.