Life with Trigeminal Neuralgia - Cathryn's Story
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- Опубликовано: 5 окт 2021
- The story of my beautiful sister-in-law Cathryn...
Every year, October 7th is Trigeminal Neuralgia Awareness Day.
To support the research given to TN, and how to better care for TN sufferers, consider checking out facingfacialpain.org.
#tnwarrior #trigeminalneuralgia 
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Since many have asked, here is an update from my sister-in-law Cathryn, as of today (June 29, 2022). Thank you to the many who have shown concern for her and her TN journey! At the beginning of June Cathryn underwent a procedure, and this is her update for you all!
"It is called a Peripheral Nerve Stimulator (PNS), and this one is the permanent implant (I had the trial version in November 2021 to see if it would work for me). There is a battery in my chest that the wires are attached to, and they were placed along my neck, up behind my ear into a loop that was secured to my skull, and then pushed forward along the three trigeminal nerve branches on the right side of my face. It basically provides interference for the messages my nerves are sending to the pain receptors in my brain. The trigeminal nerve is interpreting every sensation (touch, temperature, etc) as pain, the frequencies that are programmed into the PNS interrupt that signals sent by the nerves, which confuses the brain.
The first week after the procedure was difficult with all of the swelling and aches from surgery, but I could tell quite quickly that it was working because I wasn’t experiencing the burning left from my glycerol needle rhizotomy in 2019.
A month post-op I have noticed a drastic decrease in electric shocks and stabbing pains in addition to that burning being so much reduced. I have found that the constant ache or boring, rolling pains still happen, but most of my pain areas are covered by this device and it provides three frequencies that I can switch between and I can change the amplitudes along each wire as well. My pain is not gone, of course, but this therapy provides me the ability to manage it so much better. I am hoping to be able to decrease the medications that I had to add in when my lidocaine & ketamine infusions were no longer covered in September of last year."
That is amazing so glad you found something else, I considered the pain stimulator as backup
I dealt with this insidious condition for 7 years. I had the teflon pillow inserted June 0f 2018 and had instant relief and I am pain free to this day. My artery had been imbedded into the nerve so severe that I was in constant pain near the end. It seems my surgery was a miracle.....no pain at all, immediately. I pray for you and all that deal with this evil handicap. Be strong!
@@colorlessdiamond so happy you have no more pain!!
Wonderful!
I'm glad you got some relief from this. I found a research article on cutting out saturated fats, I adopted a predominately plant base diet(no meat or dairy) and cook with broth or water. I found some hardy plant base meals I cook in large batches and freeze them. I try to get leafy greens (kale, spinach, chard) through smoothies that I make with water, mixed berries, banana and add 3 tablespoon of flaxseed or chia seeds, it's quite tasty. My pain went away in days... I know we are all different and may work differently for each person. It is incredibly frustrating to think there's nothing we can personally do. I didn't have anything to lose, if eating less fat and more plants was going to help, why not? I started this in March of 2022 and happy to say that I am still pain free. I will say, there was a time I was using plant base meats regularly and my pain did return though nothing like before, they have quite a bit of saturated fats in them. If I eat meat or dairy these days it's just a couple of bites. I hope you will give this a try and that it will give you some relief.
My mother was diagnosed at age 79. She said it was like firecrackers exploding on her face. After finally finding a diagnosis, she tried a variety of medications, a variety of radiation treatments, nerve blocks, radiation, you name it; and at age 80 underwent decompression surgery in Vermont. She stayed on medication for a few years, gradually decreasing dosage. She will be 97 next month and no more TGN.
That's amazing, so it was successful?
Thats exactly how I describe it. Its like one of those handheld sparklers. the fire moves down slowly sparking and finally exploding at the end
This has runned my life, I've lost my job, every few days some times everyday I get the pain for 3 to 4 hours at a time, stay strong everyone this TN isn't easy ❤️❤️
❤❤❤stay strong
Yes it's not easy we are survivors
I just found out I have T.N. and the pain has been so debilitating that when I'm in the middle of an attack I'm not myself. I lost control and shouted at my wife because she abandoned me on the side of the road. She has since left me.
well said and I wished the treatment was working with us rather than against us
@@lukeventers4755 it’s not easy all I can say I stay strong
Such a beautifully made video. I can’t imagine enduring this. She is such a warrior. I am praying for her and for everyone who suffers from debilitating pain.
Visit Doctor Ani John herbal home @.his RUclips channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work
Thanks prayers help more than ANYTHING IN THE WORLD. GOD and his only begotten son Jesus . Heating pads too and castor oil
My heart goes to you and everyone who suffers from this condition. I suffer from it and its demonic. I have never felt so scared and frustrated in my life. I was diagnosed about 4 years and the medication was working but I have been feeling the severe pain since two weeks ago. I haven't told my family because I am afraid once I tell them then it becomes real that I am not okay. So far I am trying to do it alone. I am hopefully seeing my physician tomorrow whom I'm praying will help me figure out the next step. I find that physician sometimes don't know what to do so they kinda abandon you. All the best to everyone.
READ MY POST PLEASE
Thandiwe, did you see your Dr?
Yes I have. I am lucky my GP is the best doctor. He tried what he could and eventually spoke to his friends that are specialists(neurologist) they recommend a mixture of medications and it's working so far. I've been referred to a pain clinic though. I don't like taking such strong meds 😫 so I'm hoping I find help at the clinic. Thanks so much for asking
@@thandiwemaphanga1205 which province are you in? Maybe I should look into a pain clinic. I was just prescribed Tegretol. It's nowhere close to helping me 😢
I'm in Mpumalanga. The doctor I've been referred to is in Tonga. It's over an hour from Nelspruit.
I’m 38 and I was diagnosed with this back in 21’ but suffered from the pain since 2018, which I suffered in silence because I literally couldn’t talk. My pain is on the left side of my face and everything she’s saying is absolutely true. The stabbing/shocking pain is indescribable. My body has gotten immune to the meds so they’ve literally stopped working for me. My insurance isn’t as good, so I’m praying that I can get approved for some of the pain treatments. I feel your hurt/pain my sister and being in pain without people understanding is frustrating. 🖤🙏🏾
PLEASE SEE MY POST...IT MAY HELP
God bless you. I just found out I have T.N. and the pain has been so debilitating that when I'm in the middle of an attack I'm not myself. I lost control and shouted at my wife because she abandoned me on the side of the road. She has since left me.
@@lukeventers4755 That is so sad that your other half left when you needed her the most. But I can also understand her decision, especially if she can't quite fathom just how awful TN is. Doesn't take away from the emotional anguish that overlays the actual pain from the TN.
A friend of mine suffers from the condition and I am a witness to the devastation it has wreaked in their life.
What worked for me: 1) Ashwagandha capsules OR seek ayurvedic treatment. You'll see a lot of cases online wherein Ayurveda helped where other coventional medicines couldnt.
2) Cleaning affected side's eye by submerging it under water and looking up, down left and right whilst underwater.
3) Massages. Physical massages at any massage parlour focussing on upper body and shoulders.
4) Workout + Cardio. Cardio helps immensely. Perhaps due to the excess O2 inhalation.
The above has cured countless people including me and isn't expensive to implement either.
@@vishalsakhare1580 That's good info.
As a Husband that’s wife is going thru this I couldn’t stop chocking up …:( you def tugged my Heart String because your saying exactly what she is saying
I sit and watch her and feel helpless
Your courage I applaud you
Thank you
Sending lots of love and Hope that that you and your Family is pain free all around
Thank you for the video
I appreciate your personal testimony. I have been dealing with TN since 2013. Nobody knows what pain we are going through but us. There is no relief from this pain. Suffering everyday is a way of life which is impossible to cope with. Doctors cannot cure this disease. They experiment with us TN patients. Living a life of pills becomes the norm which is horrible to think chemicals invented by man become an everyday & night norm. I have been praying for healing but have not been healed. Life is not fair. Everybody that has TN needs prayer along with other diseases too. "The Good Doctor" had an episode about TN which i was glad to see some exposure about this. Prayer is needed for us sufferers as well as other people suffering from other diseases too.
Don’t describe praying. Praying for you!
I know your pain not because I went through it but because my dad did. You could physically see he was in such pain when the shockwaves sent that pain signal. I am forever in my own pain for anyone that suffers this horrible condition. I live in fear of it cuz it happened to my father, and there is no reason why it happens to one person and not another!!
I am a 28 year old, Canadian male and I was just diagnosed with TN three days ago. I had an attack that brought me to my knees in tears, and I passed out(I'm guessing because I could handle the pain). My pain has barely subsided over these days and I am absolutely terrified. This pain, everyones stories. I am so scared. This video has helped me calm down. I am praying for everyone with this disease. I pray the good days for you are great and the bad ones are bearable. I pray our doctors and the combination with OHIP can help us and recognize the urgency.
Praying for you. I think I have TN and on antibiotics and muscle relaxers now and when this comes it is horrendous so have stopped my vitamins because I can hardly keep track of how many pills I take. I hope OHIP can help you! xo
Much Love to you my friend! ❤ What saved me was turning to Jesus Christ. The Bible. Prayer. He really does give us strength, comfort, help to get us through each battle. Love and bless you!
As I’m sitting here in a major episode I cannot thank you enough for your video. You are strong and that gives me hope
Me to I was looking for relief videos I’m so exhausted from this pain I can’t sleep
Type 1 n 2 sister here we need to bring light to this. So many of us suffer in silence ❤ sending love
Because it just seems like there is no relief 😢😢😢😢😢
I was already crying and finishing your sentences by minute 4. I am a 38 y/o woman suffering from both types of TN as well. Hearing you speak made me feel less alone. I would love to follow your journey if you are sharing it anywhere online. Youve helped me today. Youve given me hope. I'm so sorry you have run into so many walls on your search for a pain-free life and I hope your road has gotten a little smoother over the last couple years.
I was crying to and scared id hurt more at the same time. It gave me hope even though I didn't know it was called the suicide illness. Im glad she shared her experiences of the procedures. I tried reading them and I get like anxiety or panic attacks reading that stuff knowing it pertains to me. I was suffering from type 2 thinking it was from other conditions but type 1 has hit the left side of my face. I already have lots of real rare stuff I was born with. This one had me real scared til I watched this video. I hope you get some relief.
I’m 19 years old and got diagnosed with TN 2 summers ago, I’m glad this video is out to shed light on it. She seems like such a great person. She’s in my prayers ❤️
Cathryn's my sister in law, and she's the absolute best. Glad I could shoot and share her story. So sorry to hear of you own diagnosis... truly.
Im 19 too, I got diagnosed March 2020, within the same month that the pain started
I am so sorry to hear that, I was 21 years old (I am 32 now) when I got diagnosed with TN1... I know TN2 is much worse, same pain, but way more often... Despite what opinions one might have on cannabis, THC really do help, but mostly in terms of coping with the pain. What "legal" medication do you get? I get Tegretol, it doesn't help on the pain itself, but it does lower the duration of an outbreak.
@@tiffanybarnes8286 I'm 20 I got it it's like this constant burning sensation but honestly I don't pay it any mind cuz I live in a 3 world country n we don't have alot of these treatment
@@LorteSandalerMedIs did it get any better
I was diagnosed with TN about 5 years ago. I have type 1, the feeling of electric shocks coming from behind my ear across my face to my eye and nose makes me scream in pain at times. I then went into a pain free phase for about 3 years and it was amazing not have that pain. Then Bam last night it's back with a vengeance.. not the welcome I wanted to greet me to the start of 2022... I have been put on pre gabalin this time instead of carbamezapine, I am hoping it kicks in soon. I wouldn't wish this pain on my enemy and I take my hat off to you for being such a brave woman. Thank you for your video. Xx
That what I’ve just been diagnosed By lateral trigeminal neuralgia on all three branches with both types of pain. At the moment it’s a 9 out 10 nost days. We are trying to find a medication that works as I’m allergic to a lot meds traditionally used for nerve pain, ie pre gabalin, diazepam, Citalapram etc. I’m tired and aching all the time some mights I can sleeps others I can’t.
I too had a pain free phase from August of last up until a week ago, then BAM 💥 sharp stabbing pain from my lower left ear shooting down to my jawline. I’m on carbamazepine 200 and gabapentin 100 and they’re not working as well as they did when I first started the meds! So I totally understand how you feel! 🙏🏾🖤
Add B12 to your daily meds I have read that it helps rebuild the Milan around nerves I have been taking B12 and it seems to help turn the volume down it wouldn't hurt to try it.
@@abigailbarfoot3846 I am allergic to a lot of meds also I take pain medication 5 times a day oxycodone I worked up ti that amount over 20 years I only take gabapenton when I flare up because of the side effects if I took it regularly. And I take effexor antidepressants which helps with pain and depression and 2mg Ativan when I can't sleep. I pray u find some relief from your pain! I did acupuncture it helped but I couldn't afford to keep doing it.
READ MY POST!!!!! PLEASE!
I was diagnosed 12 years ago. I also had the gamma knife and the surgery and soooo many diff meds over the years. I even had all my teeth pulled cuz all the side effect from those meds. On November 2 2021 I had a spinal nerve stimulator put in place on the right side. My pain has gone down so significantly that I am now being apart of my family and friends life. Doing most all daily activities. I do have some pain rated 10 pains on the Richter scale but they are 90% +|~ gone!! I had to mourn who I was pre-TN. my husband and I went thru so much cuz of TN almost to the point of divorce. Ppl can see that you are hurting but (I hate to say it) get tired of not having the whole you. You naturally change your likes, passions, how you think and speak as we get older. And TN changes who you are to your core! Even if we get 100% better tomorrow. We will not walk away without any big scars.
You are all in my thoughts and my heart! You are never alone!
Thank you for sharing your story!
I am married and can relate. That thought was actually going through my head today of (well he's going to get tired of this) that I ask him to not tell me stuff that will make me laugh, I can't kiss him half the time without it hurting, I can't get to stressed or emotional, good or bad without a flare up and my quality of work at home and outside from home suffers. We can't go out to eat anymore because of how I have to eat ( either super slow so that it doesn't hurt, or eat normally while crying in pain). Deep down I know he would not leave me for this reason but sometimes my mind does start going to those dark places.
I had my teeth pulled out too cozz too much pain.
Cathryn, this was posted a year ago now but I’ve just found you because I was searching for any and all TN info. I was diagnosed this year at 46yrs old with both types of TN as well. I can’t work now, and I had to stop the continuing education that I was doing. I have basically been in bed for 2 months! I recently had a molar removed, and wait with cautious optimism that it’s going to relieve some of the pain and flashes of stabbing electricity.
Just know that (unfortunately) you have a community of automatic friends around you that know exactly what you are going through. I am so sorry that you are dealing with this too, I wish for a cure for this awful condition with all my heart!
I am 30yrs old, recently i learnt on my own through the internet abour TN. I am afraid to go to a neurologist, surgeries, And medications. I was a very social person, Very useful to those around me, now they dont understand my sudden change. I cant talk much and loudly,
Here is kenya, we dont have equipments for surgery, personally and my family we cant afford such amount for surgery and treatment. Am now looking at a dark painful future. I dont know how my life will be affected. I am learning quickly how to adjust to the pain and avoiding triggers..
My worst fear is the fact that i have longed so much to be an evangeslist. But now with this condition i can imagine i cant be able to talk with people. I cant generate money. I cant encourage those who are hurting.
I know life will be difficult. I need To Do Gods work, support my young family. Encourage those who are sick and painful like me. I will never give up on Gods work in as much as i will not be very effective. But God will help me!
For those of us suffering, lets give our lives to christ, he is our only hope, he will give us stress free life and give us courage to live with pain. God bless
I was diagnosed with this 2 years ago. I didn’t want to live until my MVD worked. I pray this women finds comfort. This truly hurts my heart I know how bad she hurts 😢
I was recently diagnosed and waiting to see a neurologist. My pcp won’t refer me. I’m so frustrated and ready to just be done with it all, I can’t handle the pain!! Glad you found relief
Bless your heart.. I have been going through this for a year, I’m A1 only, just shocks. The worst one I’ve had is about 50 shocks at once😢 people just don’t know what we go through.. I hope you are pain free forever ☺️
I was diagnosed in 2011 and I just nodded throughout the whole video. It is so debilitating at times. I try to embrace the good time bc the bad times are horrible.
I was diagnosed with TN about 4 years ago when I was 46 in the left side of my face. After 2 unnecessary Root Canals I was diagnosed by a face pain specialist and put on Trilepdal which has thankfully worked very well. It comes in waves, it can be gone for 2-3 months and then come roaring back for months, I'm currently taking tablets like they were tic-tacs but they keep it at bay for the most part. I truly hope for a proper cure for this damn thing one day for all TN sufferers.
I had an unnecessary root canal as well. I had to walk away from my successful business of 5yrs. PLEASE READ MY POST.
@@stj971 my dentist was my first appt due to my pain. My dentist was wonderful and experienced. He told me it was not my teeth and I should go to my doctor.
This woman is a real fighter and a true hero...
My girlfriend has suffered from TN for several years now at a relatively young age. It has been so hard for her at times, but she was just able to get her MVD surgery a week ago. Your video is inspiring to both of us as she is recovering. I hope she continues to fight and heal from this horrible condition. Much love to all of you out there going through it
Visit Doctor Ani John herbal home @.his RUclips channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work
I was quickly introduced to ATN when I was shot in the face 6 yrs ago. The day my doctor told me this constant burning, tight pain was permanent I think my heart was ripped out. So many medications, nerve blocks, therapies have been tried and it just won't stop. Sitting here now just trying to decide why I even stay alive to fight this pain every minute of my life. You are a strong person as I cannot imagine having this on all 3 branches.
Try to be strong. I have it too and have been in "remission" for awhile...
Now it's back and I'm so deeply depressed
Where is your burning? Mine is on the roof of my mouth, as I had bitten into a too hot pizza. My entire roof of my mouth.
My sincere sympathy for all of all my fellow sufferers.
Thank you for your video. I’ve been dealing with this for 20 years. in fact, I’m experiencing it right now, which is why I’m here. I hope she finds comfort.
I was diagnosed with TN in 2016 as well, but I've had it since 2010. It just took them 6 years to diagnose me. I have it on both sides. I have type 1 & 2 on both sides and also type 3 on the left. I had an MVD on the left in 2017 and the pain went away on that side until recently when it's been sporadically flaring ever since the RIGHT side started flaring in the first week of April. The right side has constantly been flaring ever since. The pain is absolute agony. My heart goes out to you and everyone else who is dealing with this agony.
I can't even imagine going thru that surgery and still have pain. I'm so sorry. If you have any silver dental fillings please test for heavy metals.
@@stj971 I have Mast Cell Activation Syndrome and was diagnosed early this year (February) so it's suspected that it may be what possibly set the TN off this time around and why it's been so difficult in trying to get the pain under control.
Whats ure symptoms
What a resilient lady. Love and light from the UK. Hoping for pain free days and some breakthrough with funding for the treatment that was working
I'm so sorry for your struggle. I hope you find relief.
Thanks for sharing your story. I’m amazed at all you’ve been through. You’re a strong person. I can relate in many was to your story. I have it as well. It’s a horrible disease that robs you of so much, but stay strong. I learned from you to let people in, I feel it’s hard to share and people believe.
God bless you, may you have wonderful painless days ahead.
My heart goes out to you. I will pray for you. Thank you for taking the time
to explain your condition. This video has cleared up a lot questions and confusion, in the minds of
others. You have helped others, you have done a beautiful, wonderful, remarkable video. Thank you.
I am in the process of waiting to get in to see a neurologist for trigeminal neuralgia. Went to one dentist, they said it was periodontal desease. Had the cleanings done, was fine for a while. This time the dentist said I had a cracked tooth that needed to be extracted. That took a while to heal but Everything seemed fine then all of a sudden wasn't . They said it can take many weeks for my referral to even get reviewed and/or accepted. It has not been an easy wait. Dealing with a lot of depression lately for the fact that I can't always talk to people when I want to. to smile, eat, laugh, cry, sneeze, sing, run, sleep...all the little things that most people take for granted. The pain is never the same day to day, hour to hour. As soon as I think I can...I can't. I've been told by others with trigem not to do surgery because it doesn't work. I only have one kidney so can't take alot of medication. There are other reasons that make me nervous to go to the neurologist, scared of what they might find. I'm really just struggling to keep hope. This is the second video I have watched on this particular issue and it is at least reassuring to know that I'm not alone in the feelings that I'm having. God bless you.
Omg this is soooo sad! I cannot describe how sorry I am for you and your family. I was just researching as I think I have TN and tour story is devastating. Wishing you all the best. Hopefully you get better and can manage your pain.
TN warrior sister ~ Thank you for doing this ~ Sending you good vibes and hope for pain free days ((hugs))
I feel your pain sister 🥰 how I wish I had the wonderful support you are blessed by x
I’m so sorry that the one medication that worked for you has been defunded 😢 Chronic pain is never taken as seriously as it should be. My heart goes out to you.
Hi. I’m 46 and I was diagnosed with Trigeminal neuralgia in January 2021 I had MVD surgery in October of 21. The pain is back This has really take over my life. It’s hard to do my job at work but somehow I’m pushing through. It’s a life changing experience that people can’t see with the eye , so they think your normal. I really felt your story and I cried with you 💚
Praying for you, Cathryn! Don't give up the fight!
Sending prayers, hugs and love to all affected by this horrible disorder. Good luck in your journey, I know it’s not easy ❤️🙏🏽
Thank you for this video. I was just diagnosed yesterday after being in intense pain for a week. Its tough to hear about her terrible journey but its a great learning tool, especially for me right now.
I was crying with you but you seem like you are strong nice person. Love the way you shared this video it could help someone else. It has help me already. Peoples don’t understand this It’s real. I felt your pain
My heart goes out to this wonderful, strong lady. TN is the pits. Especially when you have the added stress of having to pay for your own treatment, I just couldn’t imagine.
Prayers up for all of you. It is not easy to be a hero in some small corner of the world, unadvertised, that others don't even know about, but that is what you all are, every one -- heroes. Remember that and fight on. God bless.
Thank you for telling us your story. I truly can understand your situation as I have it around right facial sinus. It’s a living hell. Burning, numb pain, pain as something is pushing my sinus, feeling of some nasty inflammation. For several years I though it was bad tooth so I have removed “wisdom tooth” and number 4, that was very unnecessary !! Last year I have been diagnosed with TN but I was not believing in this diagnose willing to pull out another tooth out as I thought it was real problem. Just last Thursday I have been again diagnosed with TN and it is time to accept it. It is very weird pain sinus/tooth like which is crushing me. For several years I was expiring it and biting my teeth and thinking that I can handle it without seeing doctor but naaa, it is living hell and I can understand why is called “The suicide disease” . It sucks out all energy from me.
Have you heard of suna or sunct?? My neurologist has diagnosed me with trigeminal neuralgia as well as sunct/suna I’m confused. Trigeminal neuralgia has absolutely destroyed my life 😢😢every day I wake up & want to end my life. I feel like my neurologist & doctor don’t really care. I’m sorry you’re having to go through this I truly understand how you feel. I’m in bit of pain now but nothing I can’t handle. Keep praying one day we’ll be pain free xxxx stay strong xxx
Sorry to hear you're battling this... it's hard enough to deal with, without having doctors and neurologists that aren't on your side...
theres a doc in florida cures this disease
I feel the exact same way.. I have atypical and it’s constant and drives me mentally insane.. I have the worst anxiety ever c which makes me more moody or angry and I’m separating myself from my family and I don’t mean too..
@@arthurmarshall8200 who and how???????
@@joshuawalker1341 The pain and condition causes us to isolate. It's a nightmare for sure. Please see my posts above, it may help.
Thank you for sharing your story. I have been dealing with TN for several years. I went a while without episodes, but it’s started back up with a vengeance. Prayers for u dear.
I have GN type 1 with the electric shock pains and I have them less often than Cathryn. It is absolutely horrendous to deal with and I am going through it right now. I know exactly what she is saying. I wish nothing but pain free days 💓💓💓
God bless you for putting this out there. Some of us aren't very good at explaining just how bad TN is. This described me to a t.
Hi, what a terrible thing that you are going through by having both. heartbreaking really. I was diagnosed with TN in June last year ( 2021) after having to take a rapid covid test for work. the Dr doing the swab must have stuck the tip of the swab stick in to deep and damaged the nerve. I was given medication to help but they made me so drowsy and dizzy that I could't function or work and I need to work. I am currently taking vitamins to help, but for the past two weeks it hasn't helped. by the sound of it I have TN type 2 which is the pain that feels like its deep in the bone and its constantly there. it has changed my life drastically from not being able to drive far distances, sing, eat, talk or sometimes to smile. thankfully for now I am able to handle the pain, but life will never be the same. love from Botswana, Africa
Thank you for sharing your journey. I just wish that some sort of a broadcasting network, news reporter whoever it may be could put this on national television, of course, with your permission, to give people an insight into what we live with each and every day 24 seven for a lot of us. as I sat listening to your personal story, tears of sadness for all of us ran down my face. People just don’t understand this thing Called Trigeminal Neuralgia! I, like you, have classic and a typical Trigeminal Neuralgia. I have had two MVD‘s. The second one alleviated a lot of the electrical shocks. I live every day, in constant pain without any medication at all. I am so afraid to try the stimulator‘s as my body reacts so violently towards medication and other procedures that I have experienced. Again, thank you so much for using your voice and giving people a little window into our world of Trigeminal Neuralgia
Aaaaaa my heart goes out to you So sorry off your illness
Lots of love and blessings for you ❤❤
I have so much empathy for anyone with this. I have it. Please if you think you have this or anything else with pain… please see someone for actual pain treatment. Sometimes just taking the very edge off is what makes a huge change of quality of life ❤
I never had experienced compassion from people, now with this shock sensations not sure. I understand you very well thought. I got diagnosed back in November 2022 past a root canal. I took tegretol for two and a half months thinking it was resolved. To my surprise is back as you mentioned with more power.
Job. From hearing you you go
Back in 2011 i had an accident..i went to the docs for years always stating severe pain in 2021 a doctor finally told me i was actually diagnosed back in 11..i felt like the doctor was scared to tell me but yeah..i suffered from tn for over 10 years and only now taking meds..strong meds to help either strong anti seizure stuff (cannabis works best) or opiods ..the worst thing is how damaging the pain is.. you cant hide it..if you meet someone you like you either have to take meds before during or after to stay visibly ok..its an inner pain that few barely can understand..its excruciating..it zaps your hope..thank you for the video
Same with me i am in college my home is far so I have to take medicine in college too , I don't want to tell others about my problem but when ever I take medicine someone or the other is always around and unfortunately I had to tell them
This hit me so close to home for me as I suffer from TN and have for over 13yrs 💗
So so sorry to hear this...
Please read my posts.
Hello my name is Pearl from London I was diagnosed in 2020, I have both 1 and 2 TN. I also suffer with fibromyalgia and other chronic pain conditions. I am waiting for my first neurological appointment soon. Wishing you well. I have been in pain since I was in my 20s I am 58 now. So sad to hear that you have the challenges around funding.
I have fybro, as well, cased by scheuermanns desease, awaiting my first Neuro exam for TN. Best of luck to you.
What do you take for the pain? Or what procedures have you done? Thank you!! 🙏
My heart goes out to you. I have Fibro and depression which sounds like my worst day is a 1 on your scale to your 10. God bless you. Quality of life is difficult with chronic pain.
I have lived with TN for about 6 years and this year I started going for cold laser therapy. It has really helped. Reduced the pain and the frequency immensely. If you are able to, please try
Curious if the cold laser therapy continues to help you? I’ve been enduring TN1 and 2 and my meds (gabapentin 700mg 3 times a day seems to no longer cover pain… I’m in pain rated between 6to8 within six hours. 😢
Cathryn thank you so much for sharing your journey with this disease. I too have TN and have had it for 6 months and I can’t imagine what you have been through. I’m so sorry to hear that your progress to a road of recovery is taken away by setbacks. I have chosen to not go ahead with the meds or medical procedures and deal with it for a different perspective. It may be because I am new to this disease and you may have tried some of these things when you were first diagnosed as well. When you mentioned you are a helper it made me want to let you know about a book that I have read. It is called When The Body Says No - The Cost of Hidden Stress by Gabor Mate. I was informed that TN is a rare disease but yet when I notified my clientele about my predicament and that talking was a painful endeavour for me, I found out that 5 other people had this disease before as well. One woman who is now 80 told me she had it in her 30’s for 6 months and she was a nurse and then one day it just went away. I have heard of others like her as well. I am constantly trying different things and like you the rug is pulled out from under me and it is back to square one all over again. It seems like you have tried conventional medicine and I wonder if you have tried other things like acupuncture etc. I wish you the very best and I hope that you will regain your health and life back. God bless you.
I’ve had several medication changes since I last commented. After all the years of working at Social Security helping people file for disability, now I am a person that has filed. I just recently went part-time from full-time, hoping I can do that. It has been so hard trying to get through. These breakthroughs are horrible. My family is very worried and I have isolated from many friends and family because of my speech and unsteadiness walking. Never in a million years would I have thought I’d be afflicted with something like this.
I'm so, so sorry...
You are so very lucky having a loving husband and extended family. Its good you appreciate that.
I'm so unwell and alone, been alone for 20 years, im 48. I have no family. Friends fall away as you're no fun when youre unwell.
Thank you for sharing your story.
Very useful and i feel for you, wishing you love.
❤🇬🇧
Like she said...the pain brings you to your knees, its teŕrible.
But..after paying a lot of attention to my body, I discoverd that the pain has to do with my shoulder and neck.
Doctor said impossible, but I found a therapist willing to try. She did not know what tn is and just started pushing and kneading whatever. I was black and blue the next day, but that night I was able to sleep a few hours.
From there I started to do exercizes and taking care of the way I sit and hold my body. No more slouching in a chair watching netflix.
Life is much better now. There are still days I cannot eat or talk, but its bearable.
My doctor said I had to learn to live with the pain....
I know there are many people suffering and needing an operation.
But when nothing helps, the maybe the cause is the shoulder or neck.
I appreciate this reply as I too have been living with TN pain for years. I notice if I slouch especially in a chair the pain is so much worse. Sometimes it only takes minutes of sitting crooked or sitting on my foot sideways in a chair and the pain of a normal 4 becomes a more painful 6 or seven and I quickly change the way I sit.
My neurologist no longer wants to increase my meds to cover break through pain… as I’m on a high dose already of 700mg three times a day. Some times this pain is almost unbearable… I struggle often to sleep and just can’t get out of this cycle of pain. But as you said, keeping the neck and shoulders straight helps some.
I can sympathize with you. My life has changed since I was diagnosed in 2018 with TN. Very painful. I have my pain on the side of my face. None can understand what I go through.
Thank you for sharing your experience with all of us.
I have type 2 and listening to you has brought me back to all that I’ve lost (career)
For me I’ve found what is giving me the possibility to keep my pain around a 6-7 almost all day if The weather and my activities are nice and smooths.
Nothing was working for me… no surgeries, lidocaine drip,and no opioids; until my doctor suggested Methadone… and it works!!!!
Like I said. I still have to watch myself: not to chat to long, do bouncing exercises, or even travel for hours as the cars goes there’s a vibration added to all the pots and holes that rapidly bring it back to 10.
Peppermint essential oil’s are a relief for a short while (10 -20 min) It’s better than nothing and it smells so relaxing.
In 2017 I attempted suicide and was at a hair to loose my life (mixing all of my opioid s and everything I had with a full bottle of Champagne).
My husband saved me and today I’ve given my life to Jesus, I’m a new me in Jesus so even if Life goes bad or the pain comes back and nothing is working anymore, It’s a no no to Kill myself , It’s God’s Law and I turn to him for strength, it works all the time!
He’s the answer to all our problems and pains.
Amen✨🙏🏻✨❤️✨
Amen I can relate to you hun
That's what worked for me as well. However, you still need to find the cause. Do you have silver dental fillings? Could be Mercury POISONING. Also herpetic lesions like to live in the ganglions. Valtrex works wonders for that. Please see my post.
I was just diagnosed. I'm 38. This has helped me tremendously ❤️
Visit Doctor Ani John herbal home @.his RUclips channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work
I am so sorry for your pain :( I don't believe I have Trigeminal Neuralgia but I have Occipital Neuralgia that is excruciating, a pain that's un fathomable and makes me black out at times. I wonder how close the two are in pain levels because I've just never met anyone that has this like I do and just looking at her talk I relate immensely.
I never heard of this, but this is so sad i hope your feeling better 💜 💗
Love and best wishes to all with tn. Just as upsetting are those who believe it's just toothache and have no idea how crippling the pain is. All kinds of pain grip my face and I become frozen and unable to move. It's a life changing situation with little relief until it subsides of it's own accord.
I have been living this hell 24/7 for two years now,,,day and night non stop.....I can definitely sympathize with her. Both sides of my head feel unreal...I never thought in my life that I would be "living " with this......sigh 😔
I hear ya. Read my posts, possibly can help. Stay strong.
Thank you for this!!!! I have TN a and I don’t wish it on anyone. I am 38!
So sorry to hear you battle with TN alongside my sister in law... Glad her story is out there!
I'm 25 I'm so sorry for people that go threw its so painful
Is there any pain support groups
I'll pray for u God bless u
I am 66 years and was diagnosed in 2017 and it has destroyed my life as a single carer of my youngest daugther who has intellectual disability.. Today in life we are it to cope and do the best possible in surviving life. My family members are all deceased so it’s very challenging as I have not been able to take any of the many things due to the fact I am a carer and need to drive a vehicle as we live rural …
I was diagnosed with TN around September 2021. I started to get twitches around May 2021. I have been on medication. Neurologist recommends botox but I am afraid of needles. Dr increase meds. I use a heating pad at night after taking meds to help me sleep. At times the twitches get so intense. I don't go out as much n I don't socialize as much at work like I used to. It has effected in every aspect of my life. My husband had a stroke last month and this intensified TN. I am trying to keep myself together.
I finally had to step aside from being with my husband at the hospital to take care of me. It has help a little. I pray, pray and pray.
Catherine, my heart goes out to you. I have had TN and the shocks send me to the floor. This is such a long journey and so painful. It is hard to remain positive when treatments do not work. Stay strong. You are a true Warrior. It's been a while since you did this video and I just found you. I hope you are having better days than not.
PLEASE SEE MY POST
My mom has both types too. She's had it for over 20 years and she still fights on every day. Me, watching her, and other people with this monster disease, makes me SO very mad that they don't put enough effort in to fixing this! It's literally the most painful thing on Earth... you'd think that would warrant big help.
I'm sorry for everything you're going through :(
I have this same condition due to impacted wisdom tooth just not all on 3 branches. My stabbing pain in right under my jaw by the gland. I feel for her and everyone else going thru this.
Thank you for your video
I do not have TN. But something is going on with my neck and occiptal area it's been difficult for this progression to take me down. Laying on a couch with a heating pad remind me of me. Ugh. E be got to over come you are dying and aren't giving up that's awesome because dealing with a condition like this cause people to give up. They don't have it in them anymore because of their issue.
I wish you the best i hope something comes around that works for you. And i hope the doctors figure out what's wrong with me.
I have tn2 it’s very painful my meds stopped working as good so I have good days some days I take two drugs I have it on all three branches my heart goes out to you praying for you as well
Hi Cathryn. I’m sorry for your pain. I also suffer from Trigeminal Neurolgia. 2019 I was given the gift of unbearable pain. Fortunately for me, pain treatments have been fairly successful with limiting the number of episodes. I just received gamma knife treatment last week and I am hoping that there is some success. My goal is to get off some of the meds. They have created a whole different set of issues and are slowly taking my life away. I cannot function normally as I have very little memory and lose my words far too often. I sincerely hope that you find a way to get the help you so desperately need. If I could, I would send you the funds in an instant to continue your treatments. In the meantime I am sending you prayers, light and love. By the way we also have the same couch!! Small comforts. Lol
I had this horrible condition in my 30s (I 'm now in my 70s.) I had a procedure called the Janetta procedure which cured it. Haven't had any pain since then. It was a miracle.
You are one brave momma. Thank you for sharing. ❤ I have TN and occipital neuralgia. It started around 10 years ago when i got a root canal. Still not sure if this was the exact cause of this. But i ended up getting a mri with and with out contrast and found on both Sides my blood vessels touch my 5th cranial nerve. I have good days and bad days. I dont always get the lightening strike feeling of pain. i get the pain feeling like someone is pushing on my head non stop like its going to pop. My blood pressure also gets high when im in pain. I have triggers like flossing cold drinks hot drinks. The only thing ive had done so far was the nerve block into the occipital nerve and that didnt work. The pain came back 4 days later. I take my meds when needed and work around the triggers.
Do you have pain both side and contact is normal even in many asymptomatic patients,then what we can expect
Thank you for your brave testimonial, is a very sad and painful condition, that my husband facing for over 8 years. He had radiation, surgery, and an injection that I don't recall the name. He is taking 4 different medications, for this condition, and unfortunately, his quality of life has declined. Now, he is going for a second surgery, which the Doctor suggested is less invasive than others. Apparently, he has a legion that is grown against the Nerve. He was diagnosed with atypical Trigeminal Nerve. If doesn't resolve the problem, we will try the treatment mentioned about the injection, and hopefully, the insurance can approve. It is very disturbing to know the insurance company does not pay for treatments necessary for the patient's suffering. Sending prayers for you. Thank you.
You mentioned OHIP so you are in Canada. I have just started this journey or nightmare. My step mom has been having ketamine treatments for her fibro and it helped her tremendously, but like you her funding was pulled also.
Good Morning. Thank you for your story. I was recently diagnosed and I am scared. I’m having side effects from the meds and was recently referred to a neurosurgeon. In any case, I can relate to you. I thought people thought I was crazy initially but now I am here. I’d like to speak with you more. If you’d like to and I can figure out how to reach out to you without compromising your privacy. Thank you! ~Monica
DO NOT HAVE THE SURGERY! PLEASE READ MY POST.
I was diagnosed with neuralgia trigeminal when I was 12 I got it on the 5 , 6 and 7 cranial nerve i when to toomany doctors because the pain was I. My eyes , my head and the left side of my face all my teeth’s on left side , my father took me to get neurologist that said they will kill my nerve I was 15 already taking so many pain killers that did not work and when I was 18 after having it for so many years I was studying pharmacy and in one of my classes physiology a profesor said that the cause of that pain was lack of vitamin B ! I jump on my seat and I ask her if I can talk to her after class she said just get an complex injections called Neurobion that was just vitamin B complex and I did I got32 treatments deep injections that took care of my problem for so many years this was In1975 it only came back when I was pregnant of my second child in 1986- and I took the injections again and it was gone !!!! I suffer 7 years of my young life having that pain was worse than delivering a baby or having kidney stones ! The pain was so unreal I could not eat anything cold 🥶 or see any light 💡 my eyes were hurting and also a sharp pain in my head like a cold knife was get in in ! I was on a dark room because any light will trigger more pain and every tooth hurt and the dentist keep telling my father she does not even have cavities , but my family believes my pain therefore they keep taking me to different doctors, I only found the answer when I got to my physiology class
Hi there my dear
"pain sister",survivers&commenters..
Thank you for this video&comments.
I was diagnosed with TN 1&2 in all 3 branches about 6-7 years ago and it took about 5-6 years to get the diagnose.
I am 41 years old.
I went to many doctors who said just migraine,that it could be teeth problems(There was none but I started having them pulled out in hope that it stop the terrible pain,it didn't),that it could be related to my back problem(split disk)or my fibromyalgia,was related to a car crash many years ago,my P.T.S.D. or that I was just simply crazy..!Well I was starting to think so to.But all that or some could have had something to do with the TN.If I could ask do you or you commenters have fibromyalgia and/or migranes or someone else in your family with TN??My specialists say that it really could be related to migraine but not fibromyalgia.They say it does not run in families but I have 2 close nieces that have TN,they have TN 1&1 of them has both migraine and fibromyalgia.The other has split disks in the back and neck.Once I had a neighbor with TN&know of 5 others with TN in my town,that has 25.000 inhabitants and the my land,Iceland has 350.000.But it is said that TN is a really uncommon disease.
Im on Gabapentin,Lyrica,Tegretol,
Baklofen,Lamictal and Isoptin.Some both for TN&migraines.I also have Botox injections every 3 months&Ketamin+Lidocaine every 2 months but because of Covid it has been really hard getting the Ketamin..So life has been extreamly difficult,sometimes non excisting&a couple of times about to end it all.But I really don't want to leave my kids&family.
Now more and more are getting TN so what could be causing it..?Something in our environment,air or food??I heard that in USA about 150.000 a year are getting diagnosed with TN,kids&babies.But they say it's not common for people under 50 years get it.
Some years ago the first TN conference was held&that they were trying to get money for researches but I haven't heard about it since.
I am getting sooo tired&fed up,the pain is getting unbearable at times..I get so terrified thinking about having to "live"with this for maybe 20-30 more years.Sorry to say&so sorry for"putting it out/on to you all.But all we can do it try to stay strong&have hope...
It's so terrible that it costs so much for you to get Ketamin,for us it is a LIFE SAVER!!
I say it every time I get my treatment&I would not be here if I wasn't getting it.
Stay strong,fight&try to have some hope but I know how hard it is but it's all we can do...Giving up or killing us is not an option❤
I would really like to get to know more people with TN,getting more information&maybe getting some friends if anyone is interested...🙂
My best regards&wishes to you all
Indiana from Iceland
I was fortunate that I was diagnosed when my husband took me to the ER. It was my first episode. Meds are helping but still feel it. Neurologist appointment isn’t until August.
TO ALL TN SUFFERERS...I DO HOPE YOU READ MY POST ABOVE. IT MAY BE A SOLUTION FOR SOME OF YOU. IT TOOK ME ALMOST 20 YRS BUT I WAS DETERMINED.
IF YOU DO FIND OUT THAT YOU INDEED HAVE AMALGAM/MERCURY POISONING, I'D REALLY LIKE TO KNOW TO SEE HOW COMMON IT MIGHT BE. DON'T FORGET TO FIND OUT ABOUT THE HERPETIC LESIONS. THOSE FOR ME WERE THE ELECTRIC SHOCK ONES AND SEEMED TO RADIATE FROM A DISTINCT SPOT. MY BEST TO ALL. NEVER GIVE UP, IF I COULD DO IT SO CAN YOU! 🌻
I am interested to share my problem ....it's very difficult to survive with this pain
I have bilateral atypical trigeminal neuralgia. I went in to get a tooth pulled last week due to SEVERE unbelievable pain, like touching the raw nerve, but they wouldn't pull it. It still hurts like this all the time. I'm trying to find help but my medicaid runs out in June. I can't eat and can only carefully sip warm water and ensure. I can't brush the teeth that are hurting but most others I can but CAREFULLY. I'm terrified for myself, my future, my family's future. (I also have oddi dysfunction so I can't take any opiates, at all.)
I had the microdecompression surgery in around 2006 at Westchester Med cntr in NY and it almost completely stopped the pain.the surgeon told me I had 2 blood vessels compressing the T nerve and he placed a sheet of teflon against the nerve.the only problems I had were the piece of titanium he put over the hole was killing me-It was pressing on a nerve -so I had it removed a year after the TN surgery.And the other problem was no so bad but strange: my hair in the back where I was shaved grew back in very curly which looks strange with my usual straight hair. i hope and pray that everyone who has this can get help.Thank you
Has anyone got this with itching every day, burning, it can last for hours. 😢
YES!!! ME!! it's absolute hell. I'm in UK..
Mine actually looks red raw like burns from a fire
My heart & prayers 🙏🙏 goes out to you. I am having micro decompression surgery on May 12th 2023.
Update? Hope you’ve found some relief!! 🙏
TN2 - it's so sad living this way. Sometimes I can't wait to die. My nerve is very very sensitive to just living. Throbbing all day. Cold teeth. Numb. I hope you hang in there my friend 💓
My father had this terrible diagnosis on top of several health issues he was facing. He went through several surgeries that helped a little for a short time. The neurologist told me this was called the suicide disease! I was so overcome with despair. After several surgeries he finally had the gamma knife procedure and that worked for him although he was left with a disfigured face but non of us cared so much about that but he was out of that pain.
Visit Doctor Ani John herbal home @.his RUclips channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work
I had a severe vitamin deficiency and didn’t realize it. I had a Trigeminal attack as a result. So help me God there is no pain compared to Trigeminal nerve pain! I have given birth, absolutely no comparison. It was the worst pain I have ever felt. Like a hot knife in my face and brain. I got my vitamins right and it went away. I was getting nerve damage due to the vitamin deficiency.
Of which vitamins were you deficient?
What vitamins, was it vit b12
I have type one and I had the Gamma knife procedure done and was pain free for three years. It's slowly coming back and I'm having a new procedure done this month that is supposed to work better for those with MS.
God bless you. I know how it feels, got diagnosed recently, I suffered for years in vain and never realised it's that big.
It has got me into depression and i am dealing with it. When I got my X-ray done because I had doubts that it's a jaw related thing, I got to know that I have Mastoiditis as well.
I am into Pregabalin as well as Tryptomer.
I get triggered by almost everything these days.
I am learning to deal with it and hope to lead a peaceful life.
I was diagnosed at my current age 48 after a face injury from a fall in the street (in April 2022(right side of my face) My doctor says its Trigeminal neuralgia. I feel like dental freezing wearing off 24/7. I have it from my right side of my cheek, goes straight to the right ear (to back of ear) sometimes its back of my head, then goes up to the temples, chewing it zaps (just on the right side of my upper and lower lip (not the left side).
It last from 3 mins and the worst I have had it last is 7-10 hrs. I tried the heat pad (did nothing). I tried the ice pack (best comfort). I am taking medication during the day and at night (some days it helps other days ice pack works better) I did see the dentist (no issues found) Most days I see intermittent swelling (when the pain hits) other days I don't see the swelling (when the pain isn't hitting) People have asked if I got into a fight when they see the swelling. Trigeminal neuralgia is no walk in the park and I never recommend anyone this feeling. (This isn't the first time I injured this side of my face: I had a face accident (same side) when I was 14, flipped over a hose and fell down concrete stairs) At that time I had zero ongoing pain but still a face trauma. (this pain is unreal.
I appreciate your story and glad you shared with us. I wished my pain would get relief from a heat pad. This pain is so brutal if you work or try to attempt this sleep thing.
You are so strong 😊 how do u push through, I have 3 autoimmune diseases and I’m struggling? I feel helpless, I can’t imagine what your going through.
Visit Doctor Ani John herbal home @.his RUclips channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work
Ruined my life too. I was happy once upon a time. It absolutely ruined my life in every way🥀.
My heart goes out to you I have also been diagnosed since 2006 I have had two surgeries the GABA and the deep compression also did not work. I was wondering if you could post the link for the Instagram I believe you mentioned in your story my thoughts and prayers go out to you. I have also had three children in my life was taken away. I am lucky that I have flareups and controlled by medication and then they do go down and come back with more of a punch than ever each time I have not decided to do more surgery just taking the medicine which makes you tired
Thought I had clusters but your experience is very close to what I experience.
I have a friend who suffers from this too. My heart breaks for you