My last attack lasted 6 weeks. Morphine, oxy, or fentanyl didn’t touch it, had 2 procedures (first didn’t work) was in the hospital 10 days. This is a brutal condition that takes over your life. I hope a cure is found soon! ❤ my heart breaks for all who suffer
I have had Tn2 for 32 years, The morphine and oxy let me function as a human being, i never abused them, The Government cut the Doctors off from prescribing these medicines, three weeks later i filed for Disability, they gave it to me, but i get 1/5 of what i was making while working. But I was on Bad, bad drugs, i guess. Peace to you and good luck.
You poor soul,I pray you find a cure for this terrible disease.the medical world of science need to start doing more for people who are really suffering from this awful disease.
Thank you for talking about your experiences. I think the most frustrating thing about trigeminal neuralgia is it is progressive. I'm coming up on 3 years and I don't think I could do another 12. You are much stronger than a lot of people. We need a cure.
My heart goes out to you. I feel your pain and the attack you filmed? That was literally like watching myself last night. I was officially diagnosed in 2016, but have had it since 2010. So 12 years. I have TN1 & TN2 on both sides of my face. The left was the worst side and so I had an MVD in 2017. I had four brief TN2 flares on the left side from April 2019-August 2019 and then no pain on that side until my right side decided it was going to sent me into an abyss of pain in the beginning of April of this year and then I started getting sporadic (very short) flares on the left and even though the flares on the left don't last longer than a few minutes the absolute agony of both at the same time has me sobbing and desperately trying not to scream. I have to rely on my mom to take care of me (I'm 34) because I can't work due to the pain. The only reason I can even type right now is Im highly medicated. I'm in charge of my own meds, but probably should let my mom or step dad dole them out since during the 2016-2017 flare on the left I overdosed on my meds about five or six times. I mean, I've been trying to be careful to not repeat that, and I am on a different med, but I may end up having to consider that eventually.
Thank you so much Ruth for sharing your story and thank you Ryan for your love and support. Like probably everyone on this feed, I too suffer from TN, but nothing like you have...my heart goes out to you, you're truly a brave soul.
Thank you for your Courage on sharing your experience of TN. Hopefully, It can be a eye opener for pharmaceutical companies that better medication is needed now. We have to push for a cure an time is of the essence. God Bless You💗
I have been in pain for a yr. I would never compare m🎉y pain with yours but i cant go out. It's because it's to painful. People have no concept of what pain is. Plus people don't believe you. I pray you get better. 😊
I'm only a minute into this video but Ruth's description of her TN2, the crushing/squeezing torturing pain has me in tears because that's how I described my pain to doctors for several years until they finally diagnosed me with TN. I'm still waiting to see a neurologist-8 months and counting- and haven't be specifically diagnosed as it being type 2 but given my symptoms I'm fairly certain. I'm 34 and the symptoms started 5 years ago with burning and itching in my upper teeth, along the gums and a squeezing pain in my cheek with numbness. I didn't match with typical TN symptoms the electric shocks that are common with TN. So doctors suggested TMJ for a long time. Hearing Ruth's description of her own pain feels so validating.
Oh my dear . I know exactly what you are feeling . I have it for more than 20 years now. I was googeling And came across you . I go got therapy Every Week . I have changed my diet . I Hope you find some bit of reliëf from this suïcide pain. Lots of love M xxx ypu hubby is great .
You are an extremely brave woman for doing this video in pain. I was diagnosed with trigeminal neuralgia at age 65 after having botched root canal on a lower molar on my right side. I had first attach for 5 to 6 months intermittent with gabapetin medication. It went away 2 years then returned in February 2023. It felt like the on switch was turned on again. I am on 900 MG gabapetin which controls most pain until it wears off during day. My trigger is trying to eat on right side or talk a lot. I hope they find a cure and I will keep you in my prays. Mary Fiorentino from NY
While I don't like telling people I know how you feel, I actually do know how she feels as I have bilateral t n versions 1 2 and 3 on both sides. I live with this every day and night, all I can say is fine the beautiful people and the beautiful things in your life and hold on to those for the next day
Most people will never experience anything close to pain like TN. They don't understand it destroys every single part of you. You lose your soul and your entire identity. You just don't want to be alive in the indescribable torment you're in.
I feel your pain Ruth and I sincerely hope you will wake up one day to no pain ever again. I suffer from it as well and you give me hope that I can keep trudging along with this. Thank you for posting your video and sharing your experience. I know it must have been very difficult to do so. God bless you.
So do I, I get embarrassed during the non bearable intense pain, because I dont brush my teeth, wash my hair or face. So I feel just absolutely dirty and gross and get humiliated around people when I have to go somewhere.
@@tiffanybarnes8286 I know what you mean. I try to brush them when I am having an episode as I am already in pain and it gives me something to focus on. I find brushing my teeth the second most torturous thing after eating. I sometimes use those little go between teeth flosser things to help if I can’t brush. I am in pretty bad pain every day but not on any meds or anything so at least it is somewhat predictable. Watching you during your episode was just awful and I sure felt your pain. I’m glad to see that you have wonderful support in your husband and I’m sure it must help. Take care!
@@cherylbenish3274 Im sorry mam the woman in the video isn't me. Im just a 19 year old girl here who developed this illness last year. I wish the best to you and hope soon there is a cure to TN so none of us have to deal with the pain
I've had TN for over 3 years now. Recently I discovered a way to reduce the pain and keep it from coming back as quickly. For instance, if you have pain on the left side of your face, locate the same nerve on the right side of your face and massage that area. In fact, it would be a good idea to just massage the whole right side of your face which is opposite of the side that is hurting. This will reduce the pain that you're currently having, and keep future pain from coming back as quickly or severely. I'm only taking about one third of the medicine that I was taking before I started using this technique. This really does work, you have to you try it
I know exactly how she feels. I've decided to go for microvascular decompression surgery in a couple of months. I've tried everything and if it doesn't work, I don't know what i'm gonna do next.
I’m praying for you.. I got diagnosed with this 3 days ago… it happened do to an oral surgery gone wrong… I’m a singer so … ugh idk. Never ever experienced pain like this in my life.. I can’t talk, can’t close my mouth, don’t have control over my facial expression. I can’t laugh or smile.. this is extremely tragic to Live with but we have to remember we are blessed still… we are still here fighting and living the most and best we can. I’m praying for everyone suffering. Let’s us know how surgery goes.. you aren’t alone much love to you. 💕🙏🏻
I am in tears watching this. My daughter has been suffering for over 20 years going from doctor to doctor. I just sent her some info on TN and sources in her city to go to. She has no idea what she has. She is suicidal and Im hoping that the right neurologist and treatment will help.
After having TN 30 years, not constant but very bad at times. It originated from dental work. My last episode a Chiropractor found that my C1 and C2 in my neck was causing the issue. With regular adjustments I have not had any pain for several months now and pain free. I chose to NOT use medications or surgery over the years. I hope others find what works for them as I found over the years it comes and goes and what may work one time may not the next time. This last round I hope was the final for me. I would suggest to anyone to look closely at the neck possibly being the culprit.
@@amalfatoukh9507 From what I remember, it was immediate relief. I did have to gradually wean off of the many meds that I had been on with several follow up visits to the neurosurgeon. My final visit to him was 10 months after the treatment, but I was totally pain free at that point. Just numb.
@@gailfrieder6704 sorry to hear that! I am suffering from atypical trigeminal neuralgia and i get numbness and burning type sensations on left side of my face. I wake up with numb face on left side mostly. Looking at the side effects of gamma knife surgery, i think it will not be appropriate for me! I know it is a blessing for classic trigeminal neuralgia patients as it can relieve excruciating pain, but my struggle is constant numbness and burning sensations and pressure on my face which doesn’t allow me to talk much or laugh or make expressions! I feel like somebody has taken away all the strength from my face, my lips even shiver sometimes when i have to smile or laugh! Thanks for telling your story anyways!!
My sister had bad TN and she would have attacks where the pain was excruciating. We found an Upper Cervical chiropractor in our area (regular chiropractors won't do) and now it is like night and day. He adjusted her Atlas vertebrae. She no longer takes the anti-seizure meds the neurologist gave her and she is on road to recovery. She still experiences a little isolated quick "shock" from time to time but they are becoming less and less. The upper cervical chiropractor says its normal and they will eventually all diminish. Please look for an upper cervical chiropractor in your area.
How many sessions your sister had before seeing results? I had 4 adjustments so far in 1 1/2 weeks with a NUCCA chiropractor, but I have not been feeling any better. Is your sister completely pain free now?
Ruth, maybe you should give a try to Peptide BPC 157 and Palmitoylethanolamide (PEA), they both can help. Keep fighting, science is progressing every day !
I had breast cancer back in 2020 and after my last chemotherapy treatment I started getting pain in my jaw area and now 2024 am learning as it's gotten much worse that they believe it Trigeminal Neurlogia and I have more test and then there going to go over my options since medication were to much side effects for me. What surgery I might benefit from. If it wasn't for my amazing kids I don't think I could have made it . I definitely haven't gotten bad can't eat and my teeth feel like moving and pain 😭😭 it's definitely took over my life. I beat Breast cancer and am trying to be strong but it's definitely the worst thing I ever had to go through.
I have been told I have this seeing this has me scared right now o can kind of take the pain but looks like it gets worse. I said right now o want to die when it happens I can’t imagine how I will feel later down the road 😢 I feel so bad for you Ruth because I know what I’m going threw and I want to die and I just had my 2 attack.
Dear sister, I have seen some videos that pranayama helps in treating this. Anulom Vilom, Kapalbhati, Bhastrika . Pls read more about these. There are people here in India who have almost come out of this. I really pray god this msg will find you and help you 🙏
My last attack lasted 6 weeks. Morphine, oxy, or fentanyl didn’t touch it, had 2 procedures (first didn’t work) was in the hospital 10 days. This is a brutal condition that takes over your life. I hope a cure is found soon! ❤ my heart breaks for all who suffer
I have had Tn2 for 32 years, The morphine and oxy let me function as a human being, i never abused them, The Government cut the Doctors off from prescribing these medicines, three weeks later i filed for Disability, they gave it to me, but i get 1/5 of what i was making while working. But I was on Bad, bad drugs, i guess. Peace to you and good luck.
You poor soul,I pray you find a cure for this terrible disease.the medical world of science need to start doing more for people who are really suffering from this awful disease.
Thank you for talking about your experiences. I think the most frustrating thing about trigeminal neuralgia is it is progressive. I'm coming up on 3 years and I don't think I could do another 12. You are much stronger than a lot of people. We need a cure.
May God find a way to relieve her pain forever! Remember God, he can do anything for his children! There is always a wayout to every problem! 🙏
My heart goes out to you. I feel your pain and the attack you filmed? That was literally like watching myself last night. I was officially diagnosed in 2016, but have had it since 2010. So 12 years. I have TN1 & TN2 on both sides of my face. The left was the worst side and so I had an MVD in 2017. I had four brief TN2 flares on the left side from April 2019-August 2019 and then no pain on that side until my right side decided it was going to sent me into an abyss of pain in the beginning of April of this year and then I started getting sporadic (very short) flares on the left and even though the flares on the left don't last longer than a few minutes the absolute agony of both at the same time has me sobbing and desperately trying not to scream. I have to rely on my mom to take care of me (I'm 34) because I can't work due to the pain. The only reason I can even type right now is Im highly medicated. I'm in charge of my own meds, but probably should let my mom or step dad dole them out since during the 2016-2017 flare on the left I overdosed on my meds about five or six times. I mean, I've been trying to be careful to not repeat that, and I am on a different med, but I may end up having to consider that eventually.
Thank you so much Ruth for sharing your story and thank you Ryan for your love and support. Like probably everyone on this feed, I too suffer from TN, but nothing like you have...my heart goes out to you, you're truly a brave soul.
Thank you for your Courage on sharing your experience of TN. Hopefully, It can be a eye opener for pharmaceutical companies that better medication is needed now. We have to push for a cure an time is of the essence. God Bless You💗
Be strong ❤️ u are not alone.... Thank u for sharing your story
Ruth is amazing. Read more about our research at www.facingfacialpain.org
I have been in pain for a yr. I would never compare m🎉y pain with yours but i cant go out. It's because it's to painful. People have no concept of what pain is. Plus people don't believe you. I pray you get better. 😊
My heart breaks for you...and I understand, as I'm in a similar situation. Sending all the love...♥
I'm only a minute into this video but Ruth's description of her TN2, the crushing/squeezing torturing pain has me in tears because that's how I described my pain to doctors for several years until they finally diagnosed me with TN. I'm still waiting to see a neurologist-8 months and counting- and haven't be specifically diagnosed as it being type 2 but given my symptoms I'm fairly certain. I'm 34 and the symptoms started 5 years ago with burning and itching in my upper teeth, along the gums and a squeezing pain in my cheek with numbness. I didn't match with typical TN symptoms the electric shocks that are common with TN. So doctors suggested TMJ for a long time. Hearing Ruth's description of her own pain feels so validating.
Your in my prayers Ruth you are a very strong 💪 woman and your husband is amazing God bless you both!!
Oh my dear . I know exactly what you are feeling . I have it for more than 20 years now. I was googeling And came across you . I go got therapy Every Week . I have changed my diet . I
Hope you find some bit of reliëf from this suïcide pain. Lots of love M xxx ypu hubby is great .
You are an extremely brave woman for doing this video in pain. I was diagnosed with trigeminal neuralgia at age 65 after having botched root canal on a lower molar on my right side. I had first attach for 5 to 6 months intermittent with gabapetin medication. It went away 2 years then returned in February 2023. It felt like the on switch was turned on again. I am on 900 MG gabapetin which controls most pain until it wears off during day. My trigger is trying to eat on right side or talk a lot. I hope they find a cure and I will keep you in my prays. Mary Fiorentino from NY
While I don't like telling people I know how you feel, I actually do know how she feels as I have bilateral t n versions 1 2 and 3 on both sides. I live with this every day and night, all I can say is fine the beautiful people and the beautiful things in your life and hold on to those for the next day
This is so awful. I'm so sorry for anyone who has to deal with this ❤️❤️
People think they have felt pain have never felt TN not even 5% of it, its brutal I would shake uncontrollable crying nonstop it's pure evil
Most people will never experience anything close to pain like TN. They don't understand it destroys every single part of you. You lose your soul and your entire identity. You just don't want to be alive in the indescribable torment you're in.
I feel your pain Ruth and I sincerely hope you will wake up one day to no pain ever again. I suffer from it as well and you give me hope that I can keep trudging along with this. Thank you for posting your video and sharing your experience. I know it must have been very difficult to do so. God bless you.
So do I, I get embarrassed during the non bearable intense pain, because I dont brush my teeth, wash my hair or face. So I feel just absolutely dirty and gross and get humiliated around people when I have to go somewhere.
@@tiffanybarnes8286 I know what you mean. I try to brush them when I am having an episode as I am already in pain and it gives me something to focus on. I find brushing my teeth the second most torturous thing after eating. I sometimes use those little go between teeth flosser things to help if I can’t brush. I am in pretty bad pain every day but not on any meds or anything so at least it is somewhat predictable. Watching you during your episode was just awful and I sure felt your pain. I’m glad to see that you have wonderful support in your husband and I’m sure it must help. Take care!
@@cherylbenish3274 Im sorry mam the woman in the video isn't me. Im just a 19 year old girl here who developed this illness last year. I wish the best to you and hope soon there is a cure to TN so none of us have to deal with the pain
@@tiffanybarnes8286 We're so sorry you're both in such pain. We're working hard on a cure www.facingfacialpain.org
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I've had TN for over 3 years now. Recently I discovered a way to reduce the pain and keep it from coming back as quickly. For instance, if you have pain on the left side of your face, locate the same nerve on the right side of your face and massage that area. In fact, it would be a good idea to just massage the whole right side of your face which is opposite of the side that is hurting. This will reduce the pain that you're currently having, and keep future pain from coming back as quickly or severely. I'm only taking about one third of the medicine that I was taking before I started using this technique. This really does work, you have to you try it
Stay strong beautiful woman
My dear dear friend, hugs from all of my heart
I'm sorry I was just diagnosed with it on July 2nd. I feel all you feel. I'm scared 😢 praying for you!
I know exactly how she feels. I've decided to go for microvascular decompression surgery in a couple of months. I've tried everything and if it doesn't work, I don't know what i'm gonna do next.
I’m praying for you.. I got diagnosed with this 3 days ago… it happened do to an oral surgery gone wrong… I’m a singer so … ugh idk. Never ever experienced pain like this in my life.. I can’t talk, can’t close my mouth, don’t have control over my facial expression. I can’t laugh or smile.. this is extremely tragic to Live with but we have to remember we are blessed still… we are still here fighting and living the most and best we can. I’m praying for everyone suffering. Let’s us know how surgery goes.. you aren’t alone much love to you. 💕🙏🏻
I am in tears watching this. My daughter has been suffering for over 20 years going from doctor to doctor. I just sent her some info on TN and sources in her city to go to. She has no idea what she has. She is suicidal and Im hoping that the right neurologist and treatment will help.
After having TN 30 years, not constant but very bad at times. It originated from dental work. My last episode a Chiropractor found that my C1 and C2 in my neck was causing the issue. With regular adjustments I have not had any pain for several months now and pain free. I chose to NOT use medications or surgery over the years. I hope others find what works for them as I found over the years it comes and goes and what may work one time may not the next time. This last round I hope was the final for me. I would suggest to anyone to look closely at the neck possibly being the culprit.
I had Cyberknife in 2015 after suffering for 11 years. The left side of my face is numb but it surely beats the pain. Wishing you all the best.
How long it takes for you to the pain go away after gammankife?
@@amalfatoukh9507 From what I remember, it was immediate relief. I did have to gradually wean off of the many meds that I had been on with several follow up visits to the neurosurgeon. My final visit to him was 10 months after the treatment, but I was totally pain free at that point. Just numb.
Hi Gail, did your numbness go away after a point of time or it’s still there?
@@jash2199 It's still here. I don't think it will ever go away, but you get used to it after awhile.
@@gailfrieder6704 sorry to hear that! I am suffering from atypical trigeminal neuralgia and i get numbness and burning type sensations on left side of my face. I wake up with numb face on left side mostly. Looking at the side effects of gamma knife surgery, i think it will not be appropriate for me! I know it is a blessing for classic trigeminal neuralgia patients as it can relieve excruciating pain, but my struggle is constant numbness and burning sensations and pressure on my face which doesn’t allow me to talk much or laugh or make expressions! I feel like somebody has taken away all the strength from my face, my lips even shiver sometimes when i have to smile or laugh! Thanks for telling your story anyways!!
My sister had bad TN and she would have attacks where the pain was excruciating. We found an Upper Cervical chiropractor in our area (regular chiropractors won't do) and now it is like night and day. He adjusted her Atlas vertebrae. She no longer takes the anti-seizure meds the neurologist gave her and she is on road to recovery. She still experiences a little isolated quick "shock" from time to time but they are becoming less and less. The upper cervical chiropractor says its normal and they will eventually all diminish. Please look for an upper cervical chiropractor in your area.
How many sessions your sister had before seeing results? I had 4 adjustments so far in 1 1/2 weeks with a NUCCA chiropractor, but I have not been feeling any better. Is your sister completely pain free now?
Ruth, maybe you should give a try to Peptide BPC 157 and Palmitoylethanolamide (PEA), they both can help. Keep fighting, science is progressing every day !
My heart goes out to her. Poor thing. Get the decompression surgery or cut the nerve. Dont suffer anymore
I feel that pain in my left eye and eyebrow and yeater day morning my bf accidentally poked me in my left in he's sleep he moves alot.ita so painful
I had breast cancer back in 2020 and after my last chemotherapy treatment I started getting pain in my jaw area and now 2024 am learning as it's gotten much worse that they believe it Trigeminal Neurlogia and I have more test and then there going to go over my options since medication were to much side effects for me. What surgery I might benefit from. If it wasn't for my amazing kids I don't think I could have made it . I definitely haven't gotten bad can't eat and my teeth feel like moving and pain 😭😭 it's definitely took over my life. I beat Breast cancer and am trying to be strong but it's definitely the worst thing I ever had to go through.
I feel your pain. I have it to ❤
Cbd oil for neurological pain has helped some. And chiropractic. My neck is very involved.
I have been told I have this seeing this has me scared right now o can kind of take the pain but looks like it gets worse. I said right now o want to die when it happens I can’t imagine how I will feel later down the road 😢 I feel so bad for you Ruth because I know what I’m going threw and I want to die and I just had my 2 attack.
Dear sister, I have seen some videos that pranayama helps in treating this. Anulom Vilom, Kapalbhati, Bhastrika . Pls read more about these. There are people here in India who have almost come out of this. I really pray god this msg will find you and help you 🙏
th-cam.com/video/wboJHOjVtrE/w-d-xo.html
#IHopeSheIsDoingOkNow
Me and my daughter both have it 😢😮
How your tn started?
❤❤
🤗💙
😢😢16 years with this 💩
We are working hard to find a CURE. Learn about our research and join our fight by visiting www.facingfacialpain.org