Hi! I watched one of your livestreams about 2.5 months ago... right before I had a consult with a Neurosurgeon. I had Microvascular Decompression surgery nearly two weeks ago...and have started the process to wean off Tegretol in the next two weeks. I'll know by month's end if the surgery was a success!
I just found your videos after searching for info on this condition. I have it in my left side lower jaw area. But when in a flair up the whole side of my face radiates in pain. My flairs usually last 1 hour on the nose. 🤷♀️. It’s nice to have someone to share this with. Thank you for creating and sharing your journey. I have not been able to take my meds yet as my anxiety is very high. I am just so fearful of the side effects. Hope I get over it, so I can function again.
It's a very difficult journey. I'm glad you have found me. It's definitely difficult with first taking the meds. But I found a solid improvement. I hope your anxiety dips enough for you to give them a try!
I left a comment in your other video about trying the Carnivore diet because I am now fully cured. First: *Elliminate all bottled seed oils like vegetable, canola, cotton seed, soybean, grapeseed, safflour etc., etc. *Elliminate all sugar, glucose, sucrose, fruitcose. *Avoid all processed foods, packaged foods, grains, bread, potatoes etc. Go low on carbs. Eat more red meat than other meats and their organs. Use meat fats and butter. Watch ingredients must be zero sugar, salt, and low or no carb. Eggs, sardines in water, salmon, shrimps are all good. Avoid spinach because they are very high in oxalytes.
hi, thank you for sharing, I did remove your last comment because everyone has their own journey. I am glad this has worked for you, but this channel is not here for making recommendations on cures for this disease. I hope you understand. kind regards Nyree
Just in case anyone stumbles across this comment, having recently developed TN, here's what helped very quickly: Carbamazepine (600mg twice a day) and Baclofen (10mg twice a day). Also, medical Botox injections which last about three months and then another injection is required. Those dosage levels have to be worked up to over a few months, and may be unnecessarily high for you - so, always follow your doctor's directions. Your treatment may be very different, so again, work with your doctor.
@@Letsfaceittogether Yes indeed. This condition is so much more common than I’d ever have thought at the outset, and yet, many doctors seem flummoxed by the condition. It’s the knowledge that there’s light at the end of the tunnel that helps us keep going. Your channel has been an important light on that path. Thank you.
I had been suffering severe trigeminal neuralgia for years since 2012 and doctors have no idea. Yes they do what they are trained to do: mostly treating symptoms by prescriptions even having to operate on many with little to no effect. I really have no agenda but to hopefully share and help as many sufferers. Why allow yourselves to suffer if suggested just to give it at least 30days and try. How would one ever know the difference? The proof is in the pudding. Hope that helps.❤
I realize everyone will react differently to the side effects of the carbamazepine, but how did it make you feel when you first started and do the effects wear off after a few days/weeks ? I have just been told I have TN and have just watched you first video , which was very informative and helpful in easing some of my fears , I am really anxious about the meds and haven’t been able to start them yet but l know l must give them a try , your thoughts and experience would be so appreciated
It was really hard when I first started it, I was very dizzy and unwell. But I could tell it was making a difference to the pain, so i kept going. It took at least 4 weeks for me to adjust to it. Now I'm on a low maintenance dose because I'm so much better. Hope that helps xx
@@Letsfaceittogether thank you I anticipated that the side effects are brutal at times and I have health anxieties particularly about dizziness, l will just have to see and try x
Apologies for all the questions but did the side effects kick in straight away?and how long after you had taken the first medication? I just want to be as prepared mentally as l can be , my GP unfortunately is not that great, just Keeps telling everyone is different, which I know, but l think taking to someone who has gone through this experience is more valuable and reassuring xx
Hello, I have been watching some of you videos and it seems your story is not too much different then mine. I have not been diagnosed with it I would love to learn more from you as our stories are somewhat the same, looks like yours is your left side mine is my right side though. I have not seen every episode but do you have a trigger? Does it cause immediate pain every time?
I didn't really have triggers in the beginning, it seemed to flair randomly. But now, stress or illness are may main triggers. If you look back at all.my videos I probably cover most things. Cone back to me though if you think 🤔 I've missed something xx
My doctor is now suggesting surgery. I find it strange because he’s always pushed meds and to avoid surgery. The meds have kept me comfortable, I have symptoms daily but very light. He said it’s because of I wait too long my brain may develop the signal habit and after I have surgery (when it’s needed) I’ll have phantom pain so it would be pointless.
Please keep making the videos, I hate feeling alone 😢 I’m 33 years old and it’s terrifying knowing I can’t run to my husband or anyone, no one can help me if it ever gets bad. I’ve felt the pain before and I pray I don’t get to that place.
I’m not sure if I’ve asked before. I’m laying here feeling minor symptoms, do you feel your pain daily? Cause I feel mine daily but it’s not that huge lightning bolt. Thank God it’s not very often but daily I’ll feel a minor shock or tooth ache for a little while. Nothing too high in pain level.
Hi Sarah, I will just come back on this comment...after about a year things just got more stable. I was able to reduce the meds to one tablet. I've been doing pretty well
Hi! I watched one of your livestreams about 2.5 months ago... right before I had a consult with a Neurosurgeon. I had Microvascular Decompression surgery nearly two weeks ago...and have started the process to wean off Tegretol in the next two weeks. I'll know by month's end if the surgery was a success!
Amazing 👏 Nancy. I hope you gain strength and that things will get a lot better for you x
@@Letsfaceittogether I'll definitely let you know!
Thank you for your videos!! I’ve been following your journey and it’s incredible to see how far you’ve come. It’s giving me hope ❤
I'm so glad 😊 it's helping you. Hope, is definitely what people need with this condition
I just found your videos after searching for info on this condition. I have it in my left side lower jaw area. But when in a flair up the whole side of my face radiates in pain. My flairs usually last 1 hour on the nose. 🤷♀️. It’s nice to have someone to share this with. Thank you for creating and sharing your journey. I have not been able to take my meds yet as my anxiety is very high. I am just so fearful of the side effects. Hope I get over it, so I can function again.
It's a very difficult journey. I'm glad you have found me. It's definitely difficult with first taking the meds. But I found a solid improvement. I hope your anxiety dips enough for you to give them a try!
Thank you so much for taking your time out of your day to explain things
Oh, thank you for the encouragement ❤️
Thank you for making these videos! We appreciate you very much!!! What's the medical condition that you have other than TN? Please take care!!!
Thank you, hope. COPD from passive smoking as a child. I'm already a chronic asthmatic. I've never smoked.
I left a comment in your other video about trying the Carnivore diet because I am now fully cured. First: *Elliminate all bottled seed oils like vegetable, canola, cotton seed, soybean, grapeseed, safflour etc., etc.
*Elliminate all sugar, glucose, sucrose, fruitcose.
*Avoid all processed foods, packaged foods, grains, bread, potatoes etc. Go low on carbs.
Eat more red meat than other meats and their organs. Use meat fats and butter. Watch ingredients must be zero sugar, salt, and low or no carb.
Eggs, sardines in water, salmon, shrimps are all good. Avoid spinach because they are very high in oxalytes.
hi, thank you for sharing, I did remove your last comment because everyone has their own journey. I am glad this has worked for you, but this channel is not here for making recommendations on cures for this disease. I hope you understand. kind regards Nyree
Just in case anyone stumbles across this comment, having recently developed TN, here's what helped very quickly: Carbamazepine (600mg twice a day) and Baclofen (10mg twice a day). Also, medical Botox injections which last about three months and then another injection is required. Those dosage levels have to be worked up to over a few months, and may be unnecessarily high for you - so, always follow your doctor's directions. Your treatment may be very different, so again, work with your doctor.
Thanks for sharing, although like you say, everyone is going to be different
@@Letsfaceittogether Yes indeed. This condition is so much more common than I’d ever have thought at the outset, and yet, many doctors seem flummoxed by the condition. It’s the knowledge that there’s light at the end of the tunnel that helps us keep going. Your channel has been an important light on that path. Thank you.
I had been suffering severe trigeminal neuralgia for years since 2012 and doctors have no idea. Yes they do what they are trained to do: mostly treating symptoms by prescriptions even having to operate on many with little to no effect. I really have no agenda but to hopefully share and help as many sufferers. Why allow yourselves to suffer if suggested just to give it at least 30days and try. How would one ever know the difference? The proof is in the pudding. Hope that helps.❤
I realize everyone will react differently to the side effects of the carbamazepine, but how did it make you feel when you first started and do the effects wear off after a few days/weeks ? I have just been told I have TN and have just watched you first video , which was very informative and helpful in easing some of my fears , I am really anxious about the meds and haven’t been able to start them yet but l know l must give them a try , your thoughts and experience would be so appreciated
It was really hard when I first started it, I was very dizzy and unwell. But I could tell it was making a difference to the pain, so i kept going. It took at least 4 weeks for me to adjust to it. Now I'm on a low maintenance dose because I'm so much better. Hope that helps xx
@@Letsfaceittogether thank you I anticipated that the side effects are brutal at times and I have health anxieties particularly about dizziness, l will just have to see and try x
I am finding your videos helpful and reassuring so thank you it’s just comforting to know you are not alone on the journey x
Apologies for all the questions but did the side effects kick in straight away?and how long after you had taken the first medication? I just want to be as prepared mentally as l can be , my GP unfortunately is not that great, just Keeps telling everyone is different, which I know, but l think taking to someone who has gone through this experience is more valuable and reassuring xx
@@LetsfaceittogetherWhat do you believe was the game-changer in your situation, the Carbamazepine, time, something else, or a combination of things?
I wish you well with keeping the TN under control and this new condition.
Thank you ❤️
Hello, I have been watching some of you videos and it seems your story is not too much different then mine. I have not been diagnosed with it I would love to learn more from you as our stories are somewhat the same, looks like yours is your left side mine is my right side though. I have not seen every episode but do you have a trigger? Does it cause immediate pain every time?
I didn't really have triggers in the beginning, it seemed to flair randomly. But now, stress or illness are may main triggers. If you look back at all.my videos I probably cover most things. Cone back to me though if you think 🤔 I've missed something xx
I sure will! I have gotten the diagnosis I go to the neurologist in a few months.
My doctor is now suggesting surgery. I find it strange because he’s always pushed meds and to avoid surgery.
The meds have kept me comfortable, I have symptoms daily but very light.
He said it’s because of I wait too long my brain may develop the signal habit and after I have surgery (when it’s needed) I’ll have phantom pain so it would be pointless.
Please keep making the videos, I hate feeling alone 😢 I’m 33 years old and it’s terrifying knowing I can’t run to my husband or anyone, no one can help me if it ever gets bad. I’ve felt the pain before and I pray I don’t get to that place.
I will keep going as long as I can, I know it is terrifying. But you've got this!
I guess, he knows 🤷 best, but in the end it's still you're desicion. I 🙏 you will be confident in the choice you make.
I’m not sure if I’ve asked before. I’m laying here feeling minor symptoms, do you feel your pain daily? Cause I feel mine daily but it’s not that huge lightning bolt. Thank God it’s not very often but daily I’ll feel a minor shock or tooth ache for a little while. Nothing too high in pain level.
For me, no, I don't have pain daily bit I've had for about 3 and a half years. Previously, I did have daily pain
@@Letsfaceittogether ok. Then there’s hope. That was with the meds ?
Thank you.
Welcome!
I got pain in my tongue and its very painful
Icant talk much if Im in pain so i have to take thè pain reliever again
Sorry to hear that. I hope things improve for you
I describe the pain as being hit by a hammer. Ppl understand that.
yes, I guess they do.
Hey is the medicine still working ?
Hi Sarah, I will just come back on this comment...after about a year things just got more stable. I was able to reduce the meds to one tablet. I've been doing pretty well
@@Letsfaceittogether very happy to hear you are doing well. Take care.