I've had TN for over 6 years now! Started with Gabapentin for 2 years at the highest legal dosage. Felt like a zombie. Had two glycerol rhizotomies. Then open cranial rhizotomy behind the ear. I had pain relief for 2 years from that. Then, this past March, I had gamma knife radiation with no pain since, but I'm taking a low dose of pregabalin aka Lyrica as a safety buffer. I used to get over 50 of these attacks a day and each of them lasted about 27 seconds. It was completely debilitating. Worse than any MS symptom that I've ever had and makes HSCT look like a cakewalk. I feel your pain my friend. All my best to you.❤️
My wife had her first ocrevus infusion today she's come home with worse symptoms and more scanning of speech and like a bursitis pain in both hips extremely painful for her she's only had ms for 5mths doesn't seem to get better she's normally independent but becoming less independent through lack of mobility speech problems and involuntary head movements lirca never worked praying the ocrevus infusion works 😢
I hope someone else can relate with what I'm about to say. I can't afford insurance to go get checked. I'm going someone has advice for relief. I feel a strange numbness before the pain starts. The numbness feels like novacaine. I feel it behind my right front teeth and it spreads to my right jaw and up around my right eye and right cheek. Very rarely it's only the numbness, usually it turns into extreme pain. At first it was only once in a while, now it's everyday. The pain i feel is intense, like a 10/10 pain scale for the first 2 or so minutes and then comes down to like a 6 out of 10 for another 5 to 10 mins. If I right away get an ice pack and place it on it, it seems to shorten the duration, sometimes. The numbness around my right eye never truly goes away, it almost feels swollen but it doesn't look it. I'm hoping to get a better job soon that offers insurance. Until then I'm trying gaba (natural medicine) but I didn't know if it's helping, really.
Good to know on timing, thanks. I just hit two months in a while. I feel it’s improved, it’s still there a little bit. My impatient self wants to try cutting back on meds, but every time I feel, I want to, I talk myself back from it, or, rather, the pain does!
Wow. I also have this issue and describe it similarly (left side too). I have swelling on the left side of my upper-mouth (inside of the teeth/gum). It feels like a lot of pressure in my face and at the base of my skull, along with inside my left ear. I’ve seen so many docs and they say Trigeminal Neuralgia, yet some good docs tell me it’s likely a viral persistence in the cranial nerves. So I’m taking a lot of lysine and cat’s claw, along with other things to try to stave off viral activity. I’m doing a strict Medical Medium protocol and I’m slowly seeing some benefits.
Oh wow!! Does it feel like novacaine almost, at first and then turns extremely painful?! How are you doing now? Did you stay on that natural medicine protocol and it helped?!
Long list of holistic ways.. Accucpuntcure weekly chiropractor non inflammatory foods psil·o·cy·bin myelin sheath capsules a supplement from the accucpuntcure not sure how to spell quit good job so now almost stressfree lolcmmw wmmmmmmwwmmmmmmmkm m mm lmllllllkkkkkm mm😊😊😅😅😅@@SarahLabbett
@@MakeupAddict0606 Not completely. Carbamazepine 300 mg daily has kept it mostly controlled for several years, but the last couple of months have been pretty bad, where 400 mg is having a tough time controlling it. Really hoping that this will help
I just had a TN flare up start. I feel your pain, stay strong!
It’s the worst when you’ve been “controlled” for so long! I had an unexpected bad one Thanksgiving eve
I've had TN for over 6 years now! Started with Gabapentin for 2 years at the highest legal dosage. Felt like a zombie. Had two glycerol rhizotomies. Then open cranial rhizotomy behind the ear. I had pain relief for 2 years from that. Then, this past March, I had gamma knife radiation with no pain since, but I'm taking a low dose of pregabalin aka Lyrica as a safety buffer. I used to get over 50 of these attacks a day and each of them lasted about 27 seconds. It was completely debilitating. Worse than any MS symptom that I've ever had and makes HSCT look like a cakewalk. I feel your pain my friend. All my best to you.❤️
I have it! And I have MS. It sucks. Mine is near my eye. Yours sounds rough. Thanks for the video!
My wife had her first ocrevus infusion today she's come home with worse symptoms and more scanning of speech and like a bursitis pain in both hips extremely painful for her she's only had ms for 5mths doesn't seem to get better she's normally independent but becoming less independent through lack of mobility speech problems and involuntary head movements lirca never worked praying the ocrevus infusion works 😢
I hope someone else can relate with what I'm about to say. I can't afford insurance to go get checked. I'm going someone has advice for relief.
I feel a strange numbness before the pain starts. The numbness feels like novacaine. I feel it behind my right front teeth and it spreads to my right jaw and up around my right eye and right cheek. Very rarely it's only the numbness, usually it turns into extreme pain. At first it was only once in a while, now it's everyday. The pain i feel is intense, like a 10/10 pain scale for the first 2 or so minutes and then comes down to like a 6 out of 10 for another 5 to 10 mins. If I right away get an ice pack and place it on it, it seems to shorten the duration, sometimes. The numbness around my right eye never truly goes away, it almost feels swollen but it doesn't look it.
I'm hoping to get a better job soon that offers insurance. Until then I'm trying gaba (natural medicine) but I didn't know if it's helping, really.
I have ms and tn for 30 I finally had gamma knife radiation done have had no pain for 3yrs although it took8 months before the pain went away
Good to know on timing, thanks. I just hit two months in a while. I feel it’s improved, it’s still there a little bit. My impatient self wants to try cutting back on meds, but every time I feel, I want to, I talk myself back from it, or, rather, the pain does!
Wow. I also have this issue and describe it similarly (left side too). I have swelling on the left side of my upper-mouth (inside of the teeth/gum). It feels like a lot of pressure in my face and at the base of my skull, along with inside my left ear.
I’ve seen so many docs and they say Trigeminal Neuralgia, yet some good docs tell me it’s likely a viral persistence in the cranial nerves. So I’m taking a lot of lysine and cat’s claw, along with other things to try to stave off viral activity. I’m doing a strict Medical Medium protocol and I’m slowly seeing some benefits.
Good luck with it! I have an appointment with a neurosurgeon next week to talk cyberknife
Oh wow!! Does it feel like novacaine almost, at first and then turns extremely painful?! How are you doing now? Did you stay on that natural medicine protocol and it helped?!
Did you get better ?
Hopefully new remyelination drugs will heal the lesions on our trigeminal nerves.
Our these being made
@@SarahLabbettأين وكيف احصل عليها ؟
I cured mine let me kno if u want me to share
Just share.
How.
Long list of holistic ways.. Accucpuntcure weekly chiropractor non inflammatory foods psil·o·cy·bin myelin sheath capsules a supplement from the accucpuntcure not sure how to spell quit good job so now almost stressfree lolcmmw wmmmmmmwwmmmmmmmkm m mm lmllllllkkkkkm mm😊😊😅😅😅@@SarahLabbett
Did any procedure end up helping you?
I have an appointment with a neurosurgeon next week to discuss cyberknife 🤞
@@mldrohan wishing you luck! Has the TN gone into remission ever for you?
@@MakeupAddict0606 Not completely. Carbamazepine 300 mg daily has kept it mostly controlled for several years, but the last couple of months have been pretty bad, where 400 mg is having a tough time controlling it. Really hoping that this will help
@@mldrohan I really hope so. Wishing you much luck!
I have A-typical TN