Thank you for doing these videos. I'm just starting my TN journey and I'm on the same meds as you. They're making me feel really weird atm but it's only day 3... you have encouraged me to stick with it. Such a relief to not be in pain. You're a great source of comfort. xxxx
You give me hope. I am taking this TN journey, one day at a time. Being so new to this, I go about 3 or 4 days without any episodes, and then it hits me with several days of lightning strikes several times an hour, every hour. The face pain is the hardest part to deal with. I know that it will get better over time. Your videos help with holding onto that hope. It helps to know that others are dealing with this and understand. Have a blessed day and thank you. I appreciate you.
I just wanted to comment again that these positive stories of people having success with treatments, procedure or surgeries are super important as you know it is incredibly difficult to stay positive and these give us hope.
Aim smaller is a gold advice for me. I am relatively new to dealing with TN: first it was an eye problems, few months later it was a false alarm about left sinus and a month later I was ready to have my left molar pulled out. This was the end of June 2024, now I December there are no longer episodes but rather constant discomfort on left side of my face. Sometimes mild sometimes severe. I take Magnesium Glycinate, vit. D, B12, alpha Lipoic acid and in the evening 100 mg of Carbamazepine. I was prescribed it 2x a day, but I will try just one first. It seems to help with relaxation. The worst trigger is stress. Do everything possible to manage your stress. We cannot eliminate it, but we can minimize it by taking an excellent care of ourself. Thank you 🙏
I was diagnosed last year but went 5 months before I knew what it was. I thought it was my teeth so went to the dentist but there was nothing wrong. The dentist said it could be trigeminal neuralgia so I went to the doctor and boy was I in pain the worse I've been. When I told the doctor my symptoms he said yes it's definitely trigeminal neuralgia. He's put me on Carbamazepine 100mg twice a day. Now it's subsided I've got a follow up appointment with my doctor he said if it's got better then he wants to take me off the tablets.
@Letsfaceittogether Hi I was diagnosed with TN last year a month before Christmas I've been on Carbamazepine since. But the pain seems to of subsided I've got a follow up with my doctor this week he said if the pain as gone he's taking me off the Carbamazepine. Do you think if I come off them I'll have another flare up?
Hello! I've just found your channel, thank you - it's so good to feel less alone. I have atypical Trigeminal Neuralgia and have had years being pain free whilst taking Amitriptyline but had a recent flare up after having a dental implant (would not do that again!). I've just been started on a second medication (gabapentin) and am hoping for some pain relief when the dose builds up. I have never wanted to take any medication but can't bear the pain! Thanks so much for sharing your experiences, I've felt really sad and alone since the flare up and finding your videos have really helped me. xx
I'm so glad I've managed to help you I'm some way. Really sorry that yoh have had this flare up. It's a little reminder to me that I need to stay away from any dental work!! I hope the new meds work for you 🙏
Please explain.. I have been diagnosed with trigeminal neuralgia last week.. But in my case I don't have a triggering pain episode or excruciating pain.. I just have a burning sensation over my ear and jaw.. I just wanna know whether it starts with mild symptoms and gets worse over time Or do i have a different condition of trigeminal neuralgia?
@@ajaysiva4525wondering the same thing, i have symptoms just like you burning that come and goes, now i have startet to feel like sharp pins and needles feeling 3 months later
I was diagnosed with TN by a neurologist several years ago. Since I already had a number of painful conditions, I couldn't accept yet another painful diagnosis. Since I couldn't live with it either, I finally took the meds and basically got it under control though I do have flareups---I'm having one now. My most affected area is streaking pain across my forehead. That's why I landed on this very helpful site tonight. Many thanks for reaching out to us with your gentle voice and compassionate wisdom
Another uplifting video of hope. What a great way to start the year when people are often at their lowest. Thank you. What often helps me to disconnect from pain and other stressors is an engaging film at the movie theatre. Over Christmas, I took my grandaughters to watch Wonka, and it really helped me.
Ive been going to a pain Dr for years Ive finally found a neurosurgeon whos wonderful.I had my first MVD which helped alot but it did come back. It came back in a different direction.Im so tired of having it. I've had it for 40yr.. i keep on doing what I can and praying for all of us. I had a cousin who suffered with it and died with it. I hope we allcan help each other.
Thank you so much for your video, I find it very comforting listening to your journey. I too have TN. I will start journaling and decoupage to help me keep busy when I have these awful attacks. You take care X
Hey, i am experience trigeminal nerve pain in both side and in all 3 branches its more like burning in my jaw, tingling and some times episodes of sharp pins and needles feeling in both my ears, cheek and jaw but it Does not hurt its just annoying. I was wondering if it is start of trigeminal neurlagia or is it trigeminal neuropathy mri was clean no reason only a small retention cyst in maxillary sinus and i had sinus pressure two days before the symptoms startet it has now Been 3 months i dont feel like the symptoms is progressing. Can you help looking for answere dont know what it is had appointment with doctor they Said this is not like a typical trigeminal neurlagia and sent me home to wait 6 months to next appointment, im 20 years old going crazy beacause of these symptoms if it gets worse and severe tooth pain to, but dentist perfomed a rooth canal and it dissapered had injection in front teet. Hope you Can answer ❤❤
Look into a neurosurgeon… there is a surgery that works and is very successful ., is called vascular decompression. You will get you life back and most importantly, pain free.
I have TN for thirteen years. I went to the neurosurgeon, she told the pros and cons. I m a little hectic about it. She told me the pain may come back again. I m scare about the pain getting worse. She also told me that I m losing the sensation on my face, its a little hard to make the right choice....
Just been diagnosed with TN by GP should I insist on an MRI to confirm or just go on taking Tegrenol that has been prescribed and I’m only 3 week taking low dose and increasing by 100 ml a week but already have swelling eyes so don’t think I’ll be able to tolerate this to get to the dosage to take pain way. All pain in top jaw and teeth. Electric shock treatment to start now really bad dull pain. No obvious pain killers touching the pain. Sorry just after your ideas.
hi Trish, an MRI scan is normally arranged anyway. when I had one, it didn’t really show anything but ruled out other things. Give the tegretol time, it’s a harsh drug, but sometimes side effects calm down and you will be able to increase. There are other meds that can be offered. lots of hugs Nyree
Thank you for your reply was put on Pregabalin but after only one day these aren’t for me. Out for 16 hours flat can’t live life like that so as I have Tegretol I’m putting myself back on them. Another go starting again. Hopefully this time will go okay. Asked GP for MRI but was told inconclusive even though I’ve had a stroke and my sister died of a brain tumour out of the blue in 3 months. Hope your journey keeps on improving and I will sit glued to your posts.
Thank you for doing these videos. I'm just starting my TN journey and I'm on the same meds as you. They're making me feel really weird atm but it's only day 3... you have encouraged me to stick with it. Such a relief to not be in pain. You're a great source of comfort. xxxx
Ahhh, thank you! Yes, keep going, it gets better. Glad the video has been helpful
Thank you for being an example of someone who is living with TN and doing okay. This is helpful for those of us just diagnosed!
You are so welcome! I’m glad it’s a bit of a comfort to you.
I agree I need to hear more of this. 🤗
You give me hope. I am taking this TN journey, one day at a time. Being so new to this, I go about 3 or 4 days without any episodes, and then it hits me with several days of lightning strikes several times an hour, every hour. The face pain is the hardest part to deal with. I know that it will get better over time. Your videos help with holding onto that hope. It helps to know that others are dealing with this and understand. Have a blessed day and thank you. I appreciate you.
Thank you so much Marian, I’m glad I’m giving you something positive!
I just wanted to comment again that these positive stories of people having success with treatments, procedure or surgeries are super important as you know it is incredibly difficult to stay positive and these give us hope.
Thank you ❤️
Aim smaller is a gold advice for me. I am relatively new to dealing with TN: first it was an eye problems, few months later it was a false alarm about left sinus and a month later I was ready to have my left molar pulled out. This was the end of June 2024, now I December there are no longer episodes but rather constant discomfort on left side of my face. Sometimes mild sometimes severe. I take Magnesium Glycinate, vit. D, B12, alpha Lipoic acid and in the evening 100 mg of Carbamazepine. I was prescribed it 2x a day, but I will try just one first. It seems to help with relaxation. The worst trigger is stress. Do everything possible to manage your stress. We cannot eliminate it, but we can minimize it by taking an excellent care of ourself. Thank you 🙏
Yes, avoiding stress is so important I completely agree 👍
Please never feel like a fraud you are giving me hope. I am at the beginning of this journey and I am so thrilled to hear the positive possibilities.
Thank you, Catharine. I hope 🙏 like me, you see improvement over time x
I was diagnosed last year but went 5 months before I knew what it was. I thought it was my teeth so went to the dentist but there was nothing wrong. The dentist said it could be trigeminal neuralgia so I went to the doctor and boy was I in pain the worse I've been. When I told the doctor my symptoms he said yes it's definitely trigeminal neuralgia. He's put me on Carbamazepine 100mg twice a day. Now it's subsided I've got a follow up appointment with my doctor he said if it's got better then he wants to take me off the tablets.
@Letsfaceittogether Hi I was diagnosed with TN last year a month before Christmas I've been on Carbamazepine since. But the pain seems to of subsided I've got a follow up with my doctor this week he said if the pain as gone he's taking me off the Carbamazepine. Do you think if I come off them I'll have another flare up?
@@elainebrooke2728 that’s interesting. I guess it’s a conversation I need to have.
@@elainebrooke2728 I’m not sure if you would have a flare up, that’s a question I ask myself too x
Hello! I've just found your channel, thank you - it's so good to feel less alone. I have atypical Trigeminal Neuralgia and have had years being pain free whilst taking Amitriptyline but had a recent flare up after having a dental implant (would not do that again!). I've just been started on a second medication (gabapentin) and am hoping for some pain relief when the dose builds up. I have never wanted to take any medication but can't bear the pain! Thanks so much for sharing your experiences, I've felt really sad and alone since the flare up and finding your videos have really helped me. xx
I'm so glad I've managed to help you I'm some way. Really sorry that yoh have had this flare up. It's a little reminder to me that I need to stay away from any dental work!! I hope the new meds work for you 🙏
Is there any difference in pain with atypical trigeminal neuralgia than regular trigeminal neuralgia?
Please explain.. I have been diagnosed with trigeminal neuralgia last week.. But in my case I don't have a triggering pain episode or excruciating pain..
I just have a burning sensation over my ear and jaw..
I just wanna know whether it starts with mild symptoms and gets worse over time Or do i have a different condition of trigeminal neuralgia?
@@ajaysiva4525wondering the same thing, i have symptoms just like you burning that come and goes, now i have startet to feel like sharp pins and needles feeling 3 months later
@msmaggie801 did your symptoms get worse over time or is it the same??
I was diagnosed with TN by a neurologist several years ago. Since I already had a number of painful conditions, I couldn't accept yet another painful diagnosis. Since I couldn't live with it either, I finally took the meds and basically got it under control though I do have flareups---I'm having one now. My most affected area is streaking pain across my forehead. That's why I landed on this very helpful site tonight. Many thanks for reaching out to us with your gentle voice and compassionate wisdom
Thank you so much! Lovely to see you here
Another uplifting video of hope. What a great way to start the year when people are often at their lowest. Thank you. What often helps me to disconnect from pain and other stressors is an engaging film at the movie theatre. Over Christmas, I took my grandaughters to watch Wonka, and it really helped me.
Thank you for your encouraging 🙏 😊 and I'm glad the movie distracted from your pain
Ive been going to a pain Dr for years Ive finally found a neurosurgeon whos
wonderful.I had my first MVD which helped alot but it did come back. It came back in a different direction.Im so tired of having it. I've had it for 40yr.. i keep on doing what I can and praying for all of us. I had a cousin who suffered with it and died with it. I hope we allcan help each other.
@@deborawyckoff3509 so sorry to hear you’ve been suffering for so long.
Thank you so much for your video, I find it very comforting listening to your journey. I too have TN. I will start journaling and decoupage to help me keep busy when I have these awful attacks. You take care X
Thank you, Anita. I'm so glad the video has helped you ❤️
I'm happy to see you are doing so much better 🙏
yes, things are so much better.
Iam from India,I have type 2 trigeminal neuralgia, awful pain 24/7 no one could understanding this pain.
I'm so sad to hear you are in constant pain. I hope things 🙏 improve for you x
Hi what's helped you get better?? So.glad you are.
Can you share how you achieved stability? I had a failed rhizotomy procedure and I am feeling pretty hopeless right now.
I'm so sorry to hear that. I just think I'm fortunate that the carbamazepine gradually worked for me xx
Hey, i am experience trigeminal nerve pain in both side and in all 3 branches its more like burning in my jaw, tingling and some times episodes of sharp pins and needles feeling in both my ears, cheek and jaw but it Does not hurt its just annoying. I was wondering if it is start of trigeminal neurlagia or is it trigeminal neuropathy mri was clean no reason only a small retention cyst in maxillary sinus and i had sinus pressure two days before the symptoms startet it has now Been 3 months i dont feel like the symptoms is progressing. Can you help looking for answere dont know what it is had appointment with doctor they Said this is not like a typical trigeminal neurlagia and sent me home to wait 6 months to next appointment, im 20 years old going crazy beacause of these symptoms if it gets worse and severe tooth pain to, but dentist perfomed a rooth canal and it dissapered had injection in front teet. Hope you Can answer ❤❤
I dont have any trigger point either
Look into a neurosurgeon… there is a surgery that works and is very successful ., is called vascular decompression. You will get you life back and most importantly, pain free.
I have TN for thirteen years. I went to the neurosurgeon, she told the pros and cons. I m a little hectic about it. She told me the pain may come back again. I m scare about the pain getting worse. She also told me that I m losing the sensation on my face, its a little hard to make the right choice....
Just been diagnosed with TN by GP should I insist on an MRI to confirm or just go on taking Tegrenol that has been prescribed and I’m only 3 week taking low dose and increasing by 100 ml a week but already have swelling eyes so don’t think I’ll be able to tolerate this to get to the dosage to take pain way. All pain in top jaw and teeth. Electric shock treatment to start now really bad dull pain. No obvious pain killers touching the pain. Sorry just after your ideas.
hi Trish, an MRI scan is normally arranged anyway. when I had one, it didn’t really show anything but ruled out other things. Give the tegretol time, it’s a harsh drug, but sometimes side effects calm down and you will be able to increase. There are other meds that can be offered. lots of hugs Nyree
Thank you for your reply was put on Pregabalin but after only one day these aren’t for me. Out for 16 hours flat can’t live life like that so as I have Tegretol I’m putting myself back on them. Another go starting again. Hopefully this time will go okay. Asked GP for MRI but was told inconclusive even though I’ve had a stroke and my sister died of a brain tumour out of the blue in 3 months. Hope your journey keeps on improving and I will sit glued to your posts.
I am also affected by this past one and half years.
I'm sorry to hear that. 😔
I've found tna flossing !