Believe it or not I was suicidal because when a normal person wakes up in the morning they say what am I going to do today! When you have glossophyngeal or trigemenial neuralgia you wake up and say how much pain will I endure today! I never believed that the Lord answers prayers! How can he? He’s up there and I’m down here! A miracle happened in my life that saved me from death ! My glossophyngeal neuralgia is gone because I prayed with 3 prayer lines on my phone and within 2 hrs GOD answered my prayers again! I now believe that the Lord answers prayers because he answered mine! I’m no longer suicidal! PRAISE GOD!
One thing that is a silver lining to us struggling with TN, it makes you empathetic towards others. One only needs to read down to the comments on this video to see kindness, gentleness, and empathy. Please, God touch all in this comment section with healing 💔
I'm so sorry Nicole. I completely understand I'm 34 and I want out. I AM GOING TO FIND A CURE. WE DONT DESERVE THIS. WE DESERVE TO LIVE and not just existing. I WILL find a cure for us. I'll never stop
I understand what you’re going through and I’m so so sorry for your pain 💔 I’m sitting in my bed crying right now, feeling so alone. Suffering like this is a very lonely place to be, even if you’re surrounded by people that love you. I want to tell you, do not give up. Hang in there with me.
I was just diagnosed this left side of face a week ago. I got lucky with my doctor first try on diagnosis. I watched these videos and I’m horrified but grateful because the nerve medicine does help at least for now and I pray continues to do so so it makes no sense. I hurt a lot sometimes it sharp electric shock pain sometimes does intense pain, you feel like you’re losing your mind. My jaw half of my tongue, my tooth up by my ear and makes no sense.
Oh God please help the woman in this video! I struggle with this also and I was just diagnosed after 33 years of suffering. It’s so bad that I hit myself in my leg with a hammer to divert my attention away from the pain in my head and neck.
You are not alone I have lived with TN for 38 years, it really robs you and your family of a normal life. Having a bag of meds as a backup is fine, if it helps to get you through the day. Take care
I'm 20 y.o and I got diagnosed with it today. It started 6 years ago since I was 14 y.o. Nobody was able to know my problem until today. The pain is fatal. Been living with it for 6 years now.
I'm so sorry about your pain. I've had it since 2015 and now cluster headaches too. I've been having a few rough months but thankfully it's starting to ease off a small bit
I have had this since I was about 18. I didn’t get a diagnosis until April 2022….I’m 31. I’ve been in the emergency room too many times to count, they probably think I’m a drug addict. Loud noises trigger me too. I got diagnosed with migraines, tmj, and cluster headaches, but nothing ever worked…I got a new neurologist who recognized my symptoms right away, and started me on anticonvulsants….it still has not taken away my pain, but it has lessened it. I haven’t been in the ER since May. I still have like, a baseline of pain every single day but the shocks are less than they were. I hate this f*cking disease
I have been suffering tn for five years.I take gabapentin,pregabalin.but now its so much painful I cant tolerate.I felt irritation ,pain, swealling left side of my face,head. It’s just like a hell for me. I cant talk,cant talk.nowadays I forget everything.
Oh Nicole, oh how I understand. I am 44 and I have 99 conditions. It took way too long to fix me that it's what caused my TN. What I would do to sit down with you, just for awhile. No one understands 😢
That part of saving every medication of one needed a way out. I lost it. I think about it. I don't have fam support or kids. Its so much harder without support. I was diagnosed in Nov 2019.
@aubreysnyder338 I just want you to know that I'm thinking of you and you're welcome to drop me a note. I'm so very sorry you have this hideous disease. No one should have zero support trying to deal with it.
I understand your pain, I'm sad you have this, I also have it, and like you when it gets really bad I have thought about ending it all, but like you I have people and family who love me, and I think of them and don't want to let them down, but the pain gets soooo bad, thankyou for sharing your story, much love to you all xxx
Lass deinen Kiefer auf Entzündungen untersuchen wurzeltote Zähne könnten das auslösen oder die Weisheitszähne! Lass dein Blut auf Rantes Mercaptan und Thioether untersuchen !
@ronaldkrikorian4712 Hi Ron I am well today thanks, and hope and pray I stay that way, but tn is unpredictable, so who knows what's ahead, but I'm positive, so hope I will stay well, thanks for asking, how are you keeping?
@@jeantootell2670 I had the sister to trigemenial neuralgia called glossophyngeal neuralgia ! It’s still the suicide disease as well as the worst pain known to mankind! I had it over 2 years ago for 3 months! I told both doctors that I was going to kill myself if it continued! Thank god it gradually went away! 1 month ago it was coming back and I remember over a year ago when I almost died because the surgeon burned my pancreas during surgery I called these prayer lines and within 2 hours the pain completely went away! I never believed God answers prayers but a miracle happened to me a month before my surgery when God actually intervened to save me! My doctor and friends couldn’t believe what happened but the lord definitely knew and saved me from death! I now believe the lord does answer prayers because he answered mine!!!!!
Trigeminal neuralgia 5 years. Just had Gamma Knife Oct 26, 2023 at Wake Forest Atrium Health and would love to share my 5 year journey. I also suffered a CSF leak out my nostril and had surgery.
Hi, thank you, Nicole, for telling your story. My name is Pari Shah, and I'm writing a paper on trigeminal neuralgia. I was wondering if I could include a quotation about TN affecting your family dynamic in my paper. Thank you!
I so feel everything you are saying. I too have saved enough meds to help me should it come to that, so I totally understand what you are saying. Have you tried the DTR T-Scan from Dr. Ben Sutter, DDS. I’m looking into that now. There have been a lot of success stories. I believe my TN is caused from braces when I was 35 yrs old in 1998. Unfortunately no doctor would listen to me. I had MVD in 2001, which was unsuccessful….
If it helps anyone of you I take amitriptyline, which takes about 3 months sometimes just a few weeks to kick in, but it does work, I've had tn for 15 years and been soo lucky to only have 3 flare ups bad ones, but the last flare up was only due to my doc trying to take me off amitriptyline, please give it a try it might just work for you, xxxx
Nicole, my mom had it first and then I got it 😢 . You have had it a long time ,but Dr. Spencer from Australia can up with a capsaicin treatment. It is/was amazing . Please check out his procedure. It saved me. It breaks my heart seeing people in pain with tnm . Capsaicin oil
Mine is from a tumor. Surgery is too dangerous. Gamma knife didnt work. It is getting worse. I am a caretaker for my elderly mother. I dont know how I can go on.
Lamotrigine I’ve had cluster headaches for more than seven years now been on many medications that do not work But I’ve been using a medication called lamotrigine for few years now and has helped immensely please talk to your doctor to try it.
My name is Yara i have occipital neuralgia an trigeminal neuralgia please tell me what's your best neurologist..to what hospital you went my eyesight is almost gone yes i can't stand no light or noise it's getting worse by time
I live in the UK, I started off taking 40mg of amitriptyline then slowly tapered down and now have been taking 10mg for more than 10 years, it really might help xx
@user-cw5yr5ew8o Yes I take 1 10ml tablet every evening at 9pm, the trick is to take it at the same time every evening, don't take it 10 min late or early, keep it the same time it really helps
I have TN since I was 26 I'm now 69 .I have had 2MVD,Ballon and numerous meds I been on. I believe it's hereditary as my 1st cousin had it along with MS. I thought I suffered but she did worse and now she past. Dr have no idea what we go through and our government would think twice if they suffered with it . How long would they go without pain med. Ipray for all of us with this tragic disease. God Bless.
My husband is not as understanding as yours. Matter of fact my health is ruining us. I feel like ive disappointed everyone 😔 I hope you are doing well now ❤
Nicole ur video said Orlando park....... ur soooo close to me. I don't know how to leave my info for you but unfortunately I don't trust to leave it here
Amen that’s right. I’ve been waiting for for 33 years dealing with this. Just waiting on God. It’s been absolute torment but there have been amazing things happen while I’ve dealt with walking through the darkness.
Root Cause = Atlas C1 And Axis C2 Misalignment / Subluxation In The Cervical Spine. From Trama To The Head And Neck . Research : Blair Upper Cervical Correction , NUCCA , Advanced Orthogonal .
Ok.... there's been medicine for this for over 20yrs. But anything for TN IS only TEMPORARY. There is NO cure... weather it's medication or surgeries. Both are limited. I've been down the path of medication and two micro surgery's .
The pain is so big that nobody cant even imagine how it feels like...Cant put it into words..
Believe it or not I was suicidal because when a normal person wakes up in the morning they say what am I going to do today! When you have glossophyngeal or trigemenial neuralgia you wake up and say how much pain will I endure today! I never believed that the Lord answers prayers! How can he? He’s up there and I’m down here! A miracle happened in my life that saved me from death ! My glossophyngeal neuralgia is gone because I prayed with 3 prayer lines on my phone and within 2 hrs GOD answered my prayers again! I now believe that the Lord answers prayers because he answered mine! I’m no longer suicidal! PRAISE GOD!
I have this horrible disorder too and have for over 20 years. I understand everything she talked about it here and often feel so alone in this.
One thing that is a silver lining to us struggling with TN, it makes you empathetic towards others. One only needs to read down to the comments on this video to see kindness, gentleness, and empathy. Please, God touch all in this comment section with healing 💔
THIS RIGHT HERE 😢❤
@@shonna79 ❤️🤗
I'm so sorry Nicole. I completely understand
I'm 34 and I want out. I AM GOING TO FIND A CURE. WE DONT DESERVE THIS. WE DESERVE TO LIVE and not just existing. I WILL find a cure for us. I'll never stop
Dr. Spencer/ UA-cam capsaicin treatment worked for me! Godsend
You are great, i am suffering from the same. We do deserve to live. Thanks
There is no hope for this
Good for you! This is a dreadful disorder and we need a cure.
I cry every day. It is so tiring. And I pray. Why is this happening to me?
How are you doing today?
I understand what you’re going through and I’m so so sorry for your pain 💔 I’m sitting in my bed crying right now, feeling so alone. Suffering like this is a very lonely place to be, even if you’re surrounded by people that love you.
I want to tell you, do not give up. Hang in there with me.
@@karlaschmid Where are you from?
@@karlaschmid I am here.
I'm sorry for your pain.I will pray for you After constant cries and referrals to neurologists, God healed my pain.Prayer is powerful
I was just diagnosed this left side of face a week ago. I got lucky with my doctor first try on diagnosis. I watched these videos and I’m horrified but grateful because the nerve medicine does help at least for now and I pray continues to do so so it makes no sense. I hurt a lot sometimes it sharp electric shock pain sometimes does intense pain, you feel like you’re losing your mind. My jaw half of my tongue, my tooth up by my ear and makes no sense.
Oh God please help the woman in this video!
I struggle with this also and I was just diagnosed after 33 years of suffering. It’s so bad that I hit myself in my leg with a hammer to divert my attention away from the pain in my head and neck.
You are not alone I have lived with TN for 38 years, it really robs you and your family of a normal life. Having a bag of meds as a backup is fine, if it helps to get you through the day. Take care
I'm 20 y.o and I got diagnosed with it today. It started 6 years ago since I was 14 y.o. Nobody was able to know my problem until today. The pain is fatal. Been living with it for 6 years now.
How are you doing today?
From a fellow , I’m so sorry. I don’t know you, but I’m praying for you.
@@karlaschmid thx alot ! Let's hang in there 🙏💕
I was 23 when I was diagnosed I’m 37 now I’m having a massive flare up at the moment it’s so draining. I live alone so life is hard
How are you doing today?
I'm so sorry about your pain. I've had it since 2015 and now cluster headaches too. I've been having a few rough months but thankfully it's starting to ease off a small bit
@@marshapigott1445 Did she take her life 6 months ago? Greetings from Australia 🇦🇺
I know how hard life is with TR.
I have had this since I was about 18. I didn’t get a diagnosis until April 2022….I’m 31. I’ve been in the emergency room too many times to count, they probably think I’m a drug addict. Loud noises trigger me too. I got diagnosed with migraines, tmj, and cluster headaches, but nothing ever worked…I got a new neurologist who recognized my symptoms right away, and started me on anticonvulsants….it still has not taken away my pain, but it has lessened it. I haven’t been in the ER since May. I still have like, a baseline of pain every single day but the shocks are less than they were. I hate this f*cking disease
How are you doing today?
I've had this since I was 13 yrs old and have had two surgeries. To this day I have yet let anyone that's been though all I have
I have been suffering tn for five years.I take gabapentin,pregabalin.but now its so much painful I cant tolerate.I felt irritation ,pain, swealling left side of my face,head. It’s just like a hell for me. I cant talk,cant talk.nowadays I forget everything.
Oh Nicole, oh how I understand. I am 44 and I have 99 conditions. It took way too long to fix me that it's what caused my TN. What I would do to sit down with you, just for awhile. No one understands 😢
That part of saving every medication of one needed a way out. I lost it. I think about it. I don't have fam support or kids. Its so much harder without support.
I was diagnosed in Nov 2019.
@aubreysnyder338 I just want you to know that I'm thinking of you and you're welcome to drop me a note.
I'm so very sorry you have this hideous disease. No one should have zero support trying to deal with it.
Hi! If you read this, you are always welcome to message me, we can text or whatever would help ❤
My prayers to you Nicole
I live in Platte city just north of Overland Park. Hi! I just got diagnosed by a neurologist at Truman. Thank you for sharing your story. ❤️
Bless you I hope you find a permanent cure .
I understand your pain, I'm sad you have this, I also have it, and like you when it gets really bad I have thought about ending it all, but like you I have people and family who love me, and I think of them and don't want to let them down, but the pain gets soooo bad, thankyou for sharing your story, much love to you all xxx
Lass deinen Kiefer auf Entzündungen untersuchen wurzeltote Zähne könnten das auslösen oder die Weisheitszähne! Lass dein Blut auf Rantes Mercaptan und Thioether untersuchen !
How are you doing today?
@ronaldkrikorian4712 Hi Ron I am well today thanks, and hope and pray I stay that way, but tn is unpredictable, so who knows what's ahead, but I'm positive, so hope I will stay well, thanks for asking, how are you keeping?
@@jeantootell2670 I had the sister to trigemenial neuralgia called glossophyngeal neuralgia ! It’s still the suicide disease as well as the worst pain known to mankind! I had it over 2 years ago for 3 months! I told both doctors that I was going to kill myself if it continued! Thank god it gradually went away! 1 month ago it was coming back and I remember over a year ago when I almost died because the surgeon burned my pancreas during surgery I called these prayer lines and within 2 hours the pain completely went away! I never believed God answers prayers but a miracle happened to me a month before my surgery when God actually intervened to save me! My doctor and friends couldn’t believe what happened but the lord definitely knew and saved me from death! I now believe the lord does answer prayers because he answered mine!!!!!
Trigeminal neuralgia 5 years. Just had Gamma Knife Oct 26, 2023 at Wake Forest Atrium Health and would love to share my 5 year journey. I also suffered a CSF leak out my nostril and had surgery.
Thanks for sharing I have TN due to MS and I’ve just discovered if I walk around or any movement helps me with the lightning pain in my jaw 😢
I understand your "safety blanket". Fellow TN sufferer.
Hi, thank you, Nicole, for telling your story. My name is Pari Shah, and I'm writing a paper on trigeminal neuralgia. I was wondering if I could include a quotation about TN affecting your family dynamic in my paper. Thank you!
Absolutely--take whatever you need.
I so feel everything you are saying. I too have saved enough meds to help me should it come to that, so I totally understand what you are saying. Have you tried the DTR T-Scan from Dr. Ben Sutter, DDS. I’m looking into that now. There have been a lot of success stories. I believe my TN is caused from braces when I was 35 yrs old in 1998. Unfortunately no doctor would listen to me. I had MVD in 2001, which was unsuccessful….
Pulsed Radiofrequency of TN with CT guided imaging… Cure
I've been struggling through this for 16 years and I need to find relief.
If it helps anyone of you I take amitriptyline, which takes about 3 months sometimes just a few weeks to kick in, but it does work, I've had tn for 15 years and been soo lucky to only have 3 flare ups bad ones, but the last flare up was only due to my doc trying to take me off amitriptyline, please give it a try it might just work for you, xxxx
I also take Amitriptyline for TN. I only take it until it helps it to go away and then I stop. It definitely helps.
Are your symptoms same 15 years before too?? Like on pain scale 1-10??
Nicole, my mom had it first and then I got it 😢 . You have had it a long time ,but Dr. Spencer from Australia can up with a capsaicin treatment. It is/was amazing . Please check out his procedure. It saved me. It breaks my heart seeing people in pain with tnm . Capsaicin oil
Mine is from a tumor. Surgery is too dangerous. Gamma knife didnt work. It is getting worse. I am a caretaker for my elderly mother. I dont know how I can go on.
I am so sorry, sending you strength and love ❤
Lamotrigine
I’ve had cluster headaches for more than seven years now been on many medications that do not work
But I’ve been using a medication called lamotrigine for few years now and has helped immensely please talk to your doctor to try it.
My name is Yara i have occipital neuralgia an trigeminal neuralgia please tell me what's your best neurologist..to what hospital you went my eyesight is almost gone yes i can't stand no light or noise it's getting worse by time
I live in the UK, I started off taking 40mg of amitriptyline then slowly tapered down and now have been taking 10mg for more than 10 years, it really might help xx
@user-cw5yr5ew8o Yes, very typical, but the amitriptyline works really well for me, I'm lucky
@user-cw5yr5ew8o Yes I take 1 10ml tablet every evening at 9pm, the trick is to take it at the same time every evening, don't take it 10 min late or early, keep it the same time it really helps
@@jeantootell2670but did you have neurovascular compression too ?? And was your symptoms same when it started like pain level and frequency??
@RealmePad-wo3ul No I didn't, but you still could try, but the pain was bad before they started working
@@jeantootell2670 ok but I read that compression case will not get benefited by medicine in long term .
God bless you. I've had 2 attacks
I have TN since I was 26 I'm now 69 .I have had 2MVD,Ballon and numerous meds I been on. I believe it's hereditary as my 1st cousin had it along with MS. I thought I suffered but she did worse and now she past. Dr have no idea what we go through and our government would think twice if they suffered with it . How long would they go without pain med. Ipray for all of us with this tragic disease. God Bless.
My husband is not as understanding as yours. Matter of fact my health is ruining us. I feel like ive disappointed everyone 😔 I hope you are doing well now ❤
Nicole ur video said Orlando park....... ur soooo close to me. I don't know how to leave my info for you but unfortunately I don't trust to leave it here
Has the Neurologist proposed decompression or other options.
Not a candidate--it's bilateral and combined with occipital and geniculate neuralgias.
Try upper curvical chiropractic
Гамма или кибер нож помогает а хирургический операция ещё лучше избавиться от этой болезни есть ещё РЧД лечение
God heals
Amen that’s right. I’ve been waiting for for 33 years dealing with this. Just waiting on God. It’s been absolute torment but there have been amazing things happen while I’ve dealt with walking through the darkness.
Root Cause = Atlas C1 And Axis C2 Misalignment / Subluxation In The Cervical Spine. From Trama To The Head And Neck . Research : Blair Upper Cervical Correction , NUCCA , Advanced Orthogonal .
There are medicines now
None that I’ve found to work and I’ve tried quite a few
Get the right Dr but then they don't believe you.....
Ok.... there's been medicine for this for over 20yrs. But anything for TN IS only TEMPORARY. There is NO cure... weather it's medication or surgeries. Both are limited. I've been down the path of medication and two micro surgery's .