Trigeminal Neuralgia My Story My Journey

[@sandractallant2703]

My husband had his Trigeminal Neuralgia surgery this past Tuesday. The Neurosurgeon said his was terribly messed up on his nerve. He is doing wonderful. Has suffered since 2000 but worked for himself and didn't have insurance. He like yourself was taken to the ER bc he hurt so bad he couldn't eat. Thank God he is recovering well and praying he will be coming home tomorrow. Don't wait for it to get worse. God has you. Have the surgery.

[@vivianacasallas238]

Hi Sandra I hope you hasband is recovering well. I’d like to know if before the surgery your hasband had gamma knife ? I got it but the pain is back again

[@jamessullivan-in2xo]

I understand the best surgery is placing a packer between the artery and worn nerve

[@TiaraRoyal33]

Thank you so much for this video. It’s been 2 years since I’ve been diagnosed with occipital neuralgia. I feel the pain in my ears and neck and sometimes I just don’t know what to do with myself. Right now I’m currently pregnant and I’m scared that I won’t have the strength to take care of my child and I want to be strong for my baby.I haven’t felt like myself. I’m tired of crying and I really appreciate you making this video. I just pray I can find a neurologist that won’t blow me off and experiment on my body with different medications and nerve blocks. Praying I really find someone who cares and understands my pain.

[@somalistories5037]

I am sorry.

[@KnowingDogs]

Tiara, I have both TN and ON. Occipital nerve blocks are a huge help to me, hope you have a pain management doctor who can do those! ON is very difficult, prayers for you, can’t imagine going through it in pregnancy. I was 54 when diagnosed with TN and ON. If you have any TMJ symptoms at all be sure to have jaw diagnostics done! That has ended up being the root cause of my TN and ON pain, but I was 2 years in, and had a failed brain surgery before anyone realized my jaw joints issues were such a big deal.

[@TiaraRoyal33]

@@somalistories5037 It’s ok. I ask the Lord everyday for his healing.

[@shannonkona]

Fire any doctor that blows you off & move on to the next one! Don't give up!

[@saraf9081]

I have same ailments. Gabapentin and other pain meds I find not effective. I find exercise helps. Weights that isolate the work the cervical region. I focus on shoulders and use exercise bands for shoulders. It's so far it's the most effective at stopping the sharp shooting pain I get behind neck and ear. It's weird because the idea of exercising the joints and areas close to it was the last thing I wanted to do, but for me it helps. Wishing you a recovery

[@donnabaes]

Keeping you in my thoughts, Abby! I worked for a neurologist for several years and my heart goes out to you after seeing what people go through with this debilitating illness. You are so brave to share your story. Stay strong...many people care for you and are praying.

[@PurpleCottageCrafts]

Hi Donna, please forgive me for just now replying. As you've probably seen from my posts on FB I've been really struggling since my brain surgery last year. I did an update video if you're interested. You're such a sweet person and I appreciate your kind words and for calling me brave. I don't feel that way most days but I try and you are correct...I am blessed to be surrounded by so many people who love and support me. Take care my crafty and talented friend 😘

[@HeatherBryant22]

As a disabled nurse with this horrid disease, you have inspired me in many ways. This video is almost 2 years old and next Tuesday is my birthday and I will be your age in the video. I am glad to know that I am not too old to have the surgery. I hope that it has helped you.

[@pamstroud7866]

It is really bad. I thought I had a tooth anche.

[@tracymcgrath1192]

❤❤❤

[@TYOTF24]

Sitting in tears it's Xmas Eve, I live alone. Was getting ready to bring my cat Misha to the vets this morning and I began to get these agonising attacks of pain. I know it's not my teeth but my gums top and bottom and face was in chronic pain. Tonight I'm going to the hosp to the dental pain clinic to get some form of pain relief. It's the worst pain I've every experienced in my life. Thankyou for sharing xxxxxxx hugs

[@mumblyburg940]

Thank you so much for sharing your story. It is 4 years later and your video is encouraging me even though I have a different health issue than you. I am still young, was very active, and a sleep disorder has decimated my life. I have been working on being positive as well and your story has helped me continue to hold on and hope for better days. Crafting has been my sanity and your art is beautiful. Thanks again.

[@MLucyLuna]

For me carbamazepine has been my medicine And have an almost normal life. Besides for some spasms that have from to time. My secret I think is that I take my medicine every 12 hours on the dot. (With the alarm on my iPhone) and I have been 95% well. If not with this pain I’ll be crying all the time. I don’t resist this pain. It’s horrible. Only if you has experience it you know what we’re talking about The bad part about the medicine is the side effects

[@Taurusthebulldog]

Thank you for sharing ❤ five years after this video, I was diagnosed and came across your video. Wishing you relief 🙏🏼❤

[@creativemomentswithdurinda]

Hi Abby...I just wanted to tell you that I'm praying for you. I know how much I hate anything that hinders me from doing the things I want to. So I feel for you in having to deal with this every day. I'm glad you decided to document your journey and be on camera. It's nice to see YOU. And you're so real and sincere that I'm sure it's helpful and inspiring to those who share the same diagnosis or any kind of chronic pain. You're very brave and strong to put yourself out there like you have. I just love all your videos and am glad I can follow your journey here on youtube, as well as share in all your hauls and crafty videos. Thank you for being so open and sharing so much of yourself with all of us. Take care and God bless.

[@johnarettman9354]

I've been struggling for several years myself. Wrestling with this surgery decision. You have inspired me to take the next step. See Dr. Sharon Lynch KU Med soon and will take the plunge. Thank you for your honesty and I love you. Prayers for you and your family. March will be here soon. 😊❤

[@shannonkona]

I had TN for 17yrs. in all 3 nerves, like having a baby through your nostril every 10 seconds. A ton of clueless docs & 2 Gamma Knife surgeries later - I'm good now! No meds helped... feet in hot water seemed to help temporarily. Crying made it worse. Don't give up hope - believe you will beat this!!! ❤️ I've been pain free for over 20 years now! 😀

[@somalistories5037]

How did you treated? Did it go away by its own?

[@shannonkona]

@@somalistories5037 I got Gamma Knife surgery, twice & am pain free now for over 20 years.

[@somalistories5037]

@@shannonkona hi thanks for replying me i am happy for you i have the same problem for years now. My pain started root canal treatment performed by dentist after i got tooth injury seconds after root canal treatment i felt the pain. So after years of diagnosing nobody really what i have until now. Doctors say that i dont have TN but i have pain 24/7 so i lost hope in doctors for 2 years now i dont meet my doctor. i am just 23 years old but i lost all hope. Are you completely pain free?

[@iballslide7604]

@@shannonkona did you had any vascular contact in mri or not??

[@shannonkona]

@@somalistories5037 Oh man, my heart goes out to you. You're far too young to give up! I understand what you're feeling... I fired about 20 doctors before I finally figured out what to do on my own! (Try not to cry, it makes it worse. Putting my feet in hot water helped temporarily) Do you have 'electrical shocks' in your face that make you scream out loud? Is it all on one side of your face? There's 3 main nerves coming from the trigeminal nerve near your ear - one into forehead/eye area... one into nose/upper lip area & the last, into your chin/lower lip. How many of the nerves are affected? (I had all 3) The best advise I could give you is to make it your life's work to keep pushing to see a neural surgeon with access & experience with a Gamma Knife machine! (for me, no medication helped!) Have you contacted the TN support group? They may be able to help. Sending you my strength & aloha... please don't give up trying to find an answer! ❤️ And yes, after 2 Gamma Knife surgeries I have been pain free for over 20 years!

[@ClareCreationsAL]

Two years later I stumble across your video. I have MS and have chronic pain, multiple migraines a month, and muscle cramping. I understand your pain and I will pray for you. I watch craft videos to distract me from the pain when it's is most intense. Thank you for your story. God bless you.

[@andreahaar60]

God Bless! Thank you for sharing your story and bringing awareness to your illness. I'm glad that there is something the doctors can do to help you. I have Fibro and this is the 28th year of the personal jail that my body has me trapped in. I have my crafting is what I have , but there are days I can't because of flare ups. I have a long list of other illnesses that I have also. You are such a beautiful person. You will remain in my prayers.

[@barbibutton9619]

Have u tried Kratom? It's a plant. Lots of videos and info.

[@lisax119]

Thanks for your honesty and bravery. Been dealing with TN2 for two months and have an appointment with a neurosurgeon tomorrow. Peace to your soul!

[@ChristyBeth]

Hi Abby, you are in my prayers. I have had trigeminal neuralgia for 20 years as a result from plastic surgery from an auto accident which I sustained a severe traumatic brain injury. I had 250 stitches on my forehead, 27 staples around my head, my right ear had to be sewn back into place (hence, my TN problem, the root). Stress flares my attacks and I have learned after the first attack after remission, my TN is instantly chronic. The chronic pain can take up to 3 months to go into remission. Sadly, the worst part of TN is the fear of recurrance. I fear the TN attacks and this in turn causes stress when I notice life is getting a little hectic, crazy, or out of control; therefore, this is a cycle... I was very lucky to be diagnosed and meet Dr. Janetta (the doctor who named TN and taught the surgery you received to medical students at University of Pittsburgh). I know the feeling of despair, those who deal with TN are the bravest, strongest, and most incredible individuals in the world who share a strength which can never be measured. I should also clarify, I have TN with a Cluster Tic which means I have cluster headaches along with TN attacks at the same time. "What does not kill me only makes me stronger." I did watch your video after your surgery, at first you seemed upbeat and happy; however, you are still in desparate measures. I have to face the despair everyday, I know you do too. I am offering friendship/support and an ear to anyone who needs to talk or a friend. I need more friends which I have something in common with. Best regards Christy

[@Mary-qo2jq]

God love you, my prayers for total healing.

[@katrinamonty458]

I hope you are doing better! Although I know this disease does not go away on its own. My uncle suffers from TN and his life has been turned upside down. He did the mvd surgery but it only lasted for 2 years. He recently did the radio frequency ablation and has doing so much better! He has a little numbing on face not visibly noticeable but he says feels some numbness but that’s the point because he no longer has that horrendous pain. He can finally get back to his regular activities. This procedure can also be repeated if needed and an hour after procedure he was eating normally. He wasn’t able to even eat before this procedure. I highly recommend. He is also getting off his meds.

[@marysisson7761]

just diagnosed with TN learning about whatever my options are. The pain is very debilitation. staying positive and I know I will beat this. bless you

[@haloSrising]

Mary Sisson hey there what kind of doctor diagnosed your TN?I’m going through this right now and it’s debilitating and I’m miserable and I don’t know who to go to I have TMJ I thought it was my tooth I thought it was my ear now I’m thinking it might be this I’ve already missed quite a bit of work it comes and it goes it’s very very painful and I’m desperate for relief

[@lifebeginswithaseed]

@@haloSrising I've suffered from this for a few years. It comes and goes and it's nerve-wracking. I was desperate and bought some broad spectrum CBD tincture. It is helping! I still feel pain but it's more bearable. I got the 1000mg. That was suggested because of the level of pain we suffer from. It was expensive, but my husband didn't care. I'm so grateful for him. Hope this helps.

[@sandratheprocraftinator945]

Wow Abby i hope your doing much better now, thanks for sharing your story and love the face videos cuz we get to see the real you. God bless you girl.

[@MrTouztouz]

From a dream to having an implanted to fix my smile to the most painful journey with this shouting fire hammering night mare .A after several doctors : T/N . Dentist would not take any responsibilities. Lost my job, my life as full time mom of 4 .Please help me .My insurance would not accept this kind of treatments .and my jib as special EDU need more patience , . I am glad to hear your stories. Make me feel ok .

[@harleygirl4life6]

I have TN too & lost my career. I have been on disability now since 2009. It happened to me in 03. So I fought & worked as long as I could but I just had to stop. I even had to move from the MW to the SW. I put my journey on UTube as well. I think it helps that we all share our stories of TN & what helped or hurt us. I pray you find relief. So sorry any of us have to go through TN

[@marymilstead8359]

God bless you, I watched my mom deal with this for many many years. Medicine did help her thankfully because hers was inoperable. Hoping 2 years out from surgery has you without all the pain you were suffering during this video.

[@Marigoldblu]

Just seen this! I am a painter and crafter. I have been suffering TN for nearly four years now, going to look for more of your videos. Thank you .xx

[@barbibutton9619]

See this new procedure (2nd one mentioned in this video). I'm about to call the Mayo Clinic for it for my mom who has Trimenual Neuralgia and has tried everything

[@yolandahenderson6474]

I was diagnosed with TN about 6 months ago. I am currently taking Gabapentin for treatment. They started me out with 3 doses of 300 mg and then I had another emergency room visit and they upped it to 4 doses. I'll be going to my first neurologist visit. I'm praying that I won't have to deal with this for years. I'm still working but some days I just want to stay in the bed. I pray that you are doing well now.

[@PurpleCottageCrafts]

+Yolanda Henderson Hi there. I am sorry to hear that you also have Trigeminal Neuralgia. It is SO debilitating and I can totally relate to trying to work and deal with TN. I recently uploaded my 6 month post brain surgery video (I was horribly late in posting this as I filmed it in June of 2015 due to my TN and Anesthesia Dolorosa pain) and my 1 year post brain surgery video. I go into detail about my AD which I now have as a direct result of brain surgery. I will also pray that your pain is lessened by the Gabapentin and that you have a wonderful Neurologist who works with you and tries to find the best solution to help you live with TN. Do you have a YT channel? Please keep me posted on how you're doing, there is a wonderful network of support for all of us who have TN and other facial pains (I mentioned them in my 1 yr video & included some links in the description box) and I feel we all need to stick together and be a support/comfort etc. for each other. Thank you for taking the time to watch my video and comment. I do have a brain surgery/TN playlist if you're interested in watching those videos as well. Have a wonderful day and I hope your pain level is low!

[@pamfrink9581]

+ScrappinAbby Thank you so much for sharing your story. I have recently been diagnosed with trigeminal neuralgia. Am in the early stages. Being treated with tegretol. So far it seems to be helping somewhat. I will take that for now. It is better than nothing. Wish you all the best with your surgery.

[@mrs.duncan5860]

Yolanda Henderson hi Yolanda I had TN for 3 yrs I was on 2700mg of gabapentin it did help but my body got used to it!! So i opted for the MVD surgery it was the best decision of my life!!! There was an Artery an a vein on the nerve he removed them and placed teflon cotton between it. I now have my life back!! Hope this helps feel free to ask any questions.

[@sheilamiller2818]

I and so many ppl got fat fat fat from Gabapentin and sure enough I looked up side effects and yep its 1 of the main ones. It doesnt help when I already struggle with hypo thyroid which makes me not lose weight. Ugh

[@yolandahenderson6474]

@Ron Krikorian I’m all the way better. I had my daughter in 2017 and my pregnancy put TN in remission. Praise God!

[@elainekellybryant3787]

So happy to have you share your story!! Just found this. Have been suffering for years with TN. Looking forward to your other videos

[@karoonleowsrisook875]

I would like to suggest that you should ask your dentist to adjust your occlusion for the true centric occlusion. Which this position the lateral Pterygoid muscle will be completely inactive so that there is no pressure on the Trigeminal nerve. All TN are the 5% who have the Trigeminal nerve pass through the Lateral Pterygoid muscle. This is why movement of the jaws will trigger pain.

[@karinwignell3107]

Thank you, just starting this journey, and listening to you makes me feel so much better that I am not alone. It really sucks that we got this, but I will also push to continue with my life as you. Thank you for sharing and and giving me that e tra push. Good luck in March , hope it all goes well. Will keep looking for your posts.

[@deannaaguirre5745]

Wow looks like we had the surgery about the same time , my mvd was Feb 3 about 4 years ago, the surgery didn't work, I was a floral designer and designed jewelry, that has stopped, I lost that talent, but God has a reason for everything. Only people with TN can understand what we go through, I have found that God uses everything in my life for His Glory!. Life is a challenge but I keep going forward. I'm on 3600 Gabapentin 120 mg Baclofen and Keppra !

[@melindahernandez8778]

Thank you for sharing. My uncle is in his late 80's. Is on excruciating pain with wretched condition. He resides in P.R. and the surgeons refuse to operate on him. He children are deciding to take him either to Florida or California for help. He is poor and doesn't have great medical coverage. I'm praying and believing God will take care of him and YOU! GOD BLESS

[@28maganda]

Thank you for making this video I’ve suffered from this monster for over 20 yrs

[@roselilylabador4090]

Hi mam how are u now....3 yrs already i got tn....im n herbs ...a lot of it

[@tugaroocrab]

I have TN episodically, meaning it comes on and then goes away. I've had 5 episodes in ten years lasting upwards of a month. Dental work more often than not will trigger mine or having a high fever. It's called the suicide disease for a reason because the pain is debilitating. Because my TN is not constant I have not been referred for surgery. One of the most difficult issues is trying to explain how painful this is. I often tell people that it feels like a cattle prod is placed on the side of the face and used every three seconds. Additionally, I have ongoing occipital neuralgia (the back of the head). So I hope the surgery has been successful for this lady and it give TN sufferers hope. God bless you all.

[@torlok123451]

Thank you so much for your video. More people need to know about this disease so that hopefully some day there could possibly be a cure. I have had TN for over a year and still no relief. I am so glad that you finally found the answers you were looking for.

[@MsSuperklutz]

Gosh Abby so sorry to hear what you've been going though. I know you haven't had any videos in a long long time but had just hoped it was because you were having fun with your family this winter so again so sorry to hear what you've been having to deal with. Thanks for sharing and telling your story and you definitely will be in my thoughts and prayers. You are just the sweetest and definitely have a very positive attitude. I hadn't ever heard of this before so just take it easy and take good care and it'll be great when you finally can get back to what you so enjoy. YOU so ROCK!! Joan Smith

[@PurpleCottageCrafts]

Thank you so much Joan. I just didn't want to disappear or have my crafty followers stop coming to my channel so I wanted to explain what was going on. I'll have a few more videos between now and my actual surgery date. I appreciate you & your constant support & kind words : )

[@barbaralynch3015]

Good luck David! May you be pain free soon!

[@barbaralynch3015]

@Ron Krikorian - I just read about this mushroom. I have never heard of it before. It seems to help with many ailments. I'll ask my doctor about it. Thanks!

[@whatshisnameagain767]

Hi, am so sorry for you for your pain and discomfort, i have had TN for a meer month but I also have quite bad MULTIPLE SCLEROSIS, My TN is a symptom of my MS, I have had a verify of body wide neurological problems since 2014, never ending!!

[@ruthpryce5249]

I had TN for over 10 years went through two dentists two surgeries overt two years before I know what it was .. praying for you

[@TOBYCAT93]

Hi Abby so sorry to hear of your struggles with TrieminalNeuralgia.I will be praying for a complete recovery for you. I just stumbled on you utube channel today just loved what Ive see so far.Hope it's not to long till you get your own home and you can set your craft room.Enjoyed your tour of your current craft room. Hugs God Bless Carolyn😘❤️🙏

[@PurpleCottageCrafts]

Hi Carlyn : ) Thank you so much for your very sweet comment. I will be honest and tell you that is it VERY difficult living my life now since being diagnosed with Trigeminal Neuralgia two years ago along with Anesthesia Dolorosa a little over a year ago. I have such a passion and love for crafting that I really fight through the pain as I can to continue crafting as I can. We are actively looking for our first home here in Florida so it's been fun house hunting. I'm so glad you found my channel and again I thank you for such a sweet comment. I also appreciate your prayers very much : )

[@patriciabridges2886]

Hi Abby! I hope that you are feeling better! I have had Atypical Trigeminal Neuralgia since 1995 after a dentist put so much pressure on my jaw that he tore the cartilage and then I lost the disc.I have had Migraines since the age of 8,but ATN is far,far worse and to have to work with it,as a nurse,was horrible.Usually,it was sudden jolts of pain,sometimes with visible spasms,and aching of my face and head...sometimes that terrible aching of all my teeth on one side that could go on for weeks...and the burning head effect-always started in the ear and spread to 1/2 of the head and face....TN hell....Well,in the last few years I have been using Homeopathy! What a blessing! I don't get the burning head anymore,and if I do start with a rare bit of burning in my ear,it goes away by itself or I take a homeopathic and it is gone.I use several remedies including Swansons homeopathics for earache,nerve pain,and Migraine...I also use Hylands Belladonna(for throbbing pain) and Hylands Hypericum Perf for nerve pain and healing-also found out that Hylands Migraine can be very useful! Spigelia is another good one for TN.Boiron Sinusalia contains this.If you get sinus congestion,it can trigger or worsen TN. I found a great remedy for nasal congestion(although it states it is for chest congestion) and it helped me tremendously! It is Hylands Phosphorous....wow! I got into Homeopathy after we used it for my husband's bilateral Carpal Tunnel.(Topricin and oral homeopathic Arnica,etc. I hope this is helpful.God bless you Abby,and thank you so much for your warm and compassionate and informative video,done when you were in so much pain.

[@PurpleCottageCrafts]

Hi Patricia. Wow...I am so sorry that you have suffered with this for so long. I've read a lot of personal stories on the various online TN support groups and quite a few people had their nerve damaged by a dental procedure as you have. That has to be so frustrating. I am also a nurse or I was anyways. I haven't been in that field for 10 years now. I couldn't imagine trying to do that high level, stressful work with this pain. You are truly a strong person for continuing to take care of others while you are hurting yourself. I just uploaded my 1 year post brain surgery video on my channel if you're interested. I'd like to keep in touch so we can be a support to and for each other if you'd like. Take care and thanks for stopping by my channel.

[@dotcassilles1488]

I am a new subscriber from Australia and i have TMJ disfunction which causes TMJ pain. i call it facepain and it has been a part of my life since 1999. I am very grateful for your video. Thankyou for educating others about TMJ. Blessings Dot

[@KnowingDogs]

I so hope your MVD worked! Mine failed (no compressions found). You are brave to have made this video, so important to educate people about this painful condition!

[@iballslide7604]

But compression can be seen in pre operative mri brain too??

[@minervamartinezsalgado3083]

Hi Abby, I just realized that you made this video 3 years ago, I pray that all went well and you are doing wonderful by now. Thank you for sharing your story and bringing awareness to your illness. Prayers for you and your family, God bless you and yours.

[@autumnleaves2944]

Wow I saw Dr. Burchiel! I had MVD in March. Been pain free ever since!

[@pookieslim]

Mamajojo did the pain ever return?

[@heidim6468]

Hi I just came over your sight by accident. My husband had surgery last year and is doing well. Get the surgery the only pain he has is every now and then he has headaches Your will be taken off the meds slowly and that will be a big difference. He suffered so much. He had the surgery at cedars sinia in Los Angeles. He had the gamma knife which did not work. some say the surgery with the pad may not take also but he is dong good after a year and four months.He is off all meds and that is really what was important. So good luck ok.

[@PurpleCottageCrafts]

Hi Heidi. I'm glad you found my channel 😊. I am so happy your hubby's surgery was successful, it truly make my heart so happy to hear that it is so successful for some of us. Regretfully for me it didn't work and it actually caused me to have a second facial pain on top of my TN pain, Anesthesia Dolorosa. I talk all about it in my 1 year video I just uploaded to my channel if you're interested. I hope all is well with you and your family and that your hubby continues to have relief from TN.

[@heidim6468]

@Ron Krikorian He is doing great. No side effect and it will hold for the rest of his life. He is out of pain and that is what it’s all about.

[@heidim6468]

@Ron Krikorian Yes It was not that bad they go in behind the ear and put a pad to stop the nerve from shocking you. Jerry had a weird scar behind the ear but all is good.

[@PurpleCottageCrafts]

@Ron Krikorian hi there 😊 I am planning on doing a "6 year post op brain surgery" video soon. Today, March 2nd was my actual surgery date in 2015. I had plans to film it before today and life just got in the way. In a nutshell I'm doing okay, I have an increase in my pain and the frequency of it. And regretfully I've been experiencing the TN pain on my right side 😩 but I'm living my life as best as I can...continuing to create etc. Thank you SO much for asking how I'm doing. I really appreciate it. My plan is to have a long overdue update video in the next few weeks 😊

[@tannabella6071]

Thanks for sharing your story. Praying for you! My happy place is crafting too! God bless!

[@shelld.6822]

Not diagnosed with this yet. Sounds familiar to me but I started with a nerve THROBBING on the right side of cheek for about two weeks. I then started with PAIN on the right side of my face, thinking it was a tooth issue. My primary doctor ordered a CT scan thinking Sinusitis which came back negative. I was prescribed Carbamazepine 200 mg tabs twice a day (didn't take) and referred to a neurologist for a MRI.

[@YorkshireLassWithClass]

Hi Abby, I completely understand how you feel,I suffer from neuralgia but not as bad as you do but I know the pain. I will pray everything goes as planned and that you have a speedy and pain free recovery. Take very good care of yourself and I'll pop in now and then to see how your doing. Healing hugs. X

[@PurpleCottageCrafts]

Hi there...thanks so much for your kind comment and I apologize that I'm just now responding. It's been a really rough year since my surgery, I talk all about it in my video I uploaded the other day if you're interested in hearing how I'm doing now. I'm sorry that you to suffer from TN. Thanks for stopping by and let me know what you thought of my recent TN video.

[@donnacarraway9182]

Thanks so so much. I know a man with this who is not communicative and this really helps me understand! I’ve had a different pain for most of my life which would be completely debilitating but for 1 med that I take (which Medicare will not pay for even though nothing else works!) so I do empathize with you and hope so much that you can regain a normal life! You’re strong and good and you deserve a great life and I have a feeling that if you persist and get the correct treatment you will be a force for good! Keep going! Don’t give up! I do hope that you do have good insurance coverage. I thank you for your clear, honest explanation and I pray that you are doing well now because it’s been several months since you posted this. Blessings on you! Donna

[@sharonsilver7710]

Can you tell me what med you took that worked?Thanks

[@WhatsOnYourMind.]

Try an upper cervical chiro or a Blair chiro if you can find one. They focus on the atlas, the critical ingredient.

[@maryfiorentino809]

Unfortunately I understand. Got diagnosed after botch root canal. It went into remission but now it's back. Oh Lord. Hope you are doing better after that surgery.

[@rosalindaagulay6281]

How are you today? Iam from the philipines. I will be happy to hear from you. Hope you are well as this video is 8 yrs ago.

[@fab9326]

Neuralgia is really ennoying and its worse by going out and cold wind and especially the sun

[@cghrios783]

For me it was the wind and cold weather. Have u find any relief

[@fab9326]

@@cghrios783 I use an ice pack and thinking of having nerve block injections to stop the pain. I am on 50mg of lamotrigine.

[@cghrios783]

messiah messi [e-mail] can u email me? It would be easier. Thanks I considered the ghama knife and the nerve block which is done behind the ear but they both last from 6-12 months maybe a bit longer but it is not permanent and have to redo it.

[@boomboxpants]

My fiance has been suffering for so long with TN1. We live in a small town where nobody knew what it was that he was suffering with. He has had quite a few teeth removed because that what he was told was wrong....in fact they were so wrong!!! Many docs, testing and tons of medications later, he finally got diagnosed. He could get the same surgery the you have been waiting for alk this time, but, he doesn't realky want to be cut open! He refuses! I've been patient with him, but I am at my wits end and know how bad it is for him! It's heartbreaking!

[@50holdingcee49]

i am liking the video, just to show that i watched your video..thank you for sharing, very brave of you..many blessings! Ronni

[@4everpurplecreationslorell659]

I am glad i found this video, and now know a little more about your disease. Thank you so much for sharing your story.

[@RoseD2016]

I am sorry Abby you have this condition. I know chronic pain also and how debilitating it is. I am glad you are crafting again. God bless you. I will keep you in my prayers. Tyfs your journey. 😍

[@riakooijman1215]

sending positive thoughts your way sweetie xo

[@PurpleCottageCrafts]

Thank you so much Ria : )

[@catelamb7667]

My cousin was recently diagnosed with TN as well. I came upon this video as I was watching something different. I really learned quite a bit about this illness from your video. Thank you for sharing. I hope things are going better for you. Do you have a video post-surgery?

[@PurpleCottageCrafts]

Hi there. Thank you SO much for your kind comment. I was really nervous doing those videos but I wanted to hopefully help someone else who has TN or has a family/friend who has it as I was. I'm sorry to hear about your cousin is also battling this. I would love to be a support to him/her if they'd like to reach out. This month marks my 2 year anniversary of finding out I have this. Yes, I do have more videos and a couple post surgery. They're in my playlist called Brain Surgery-Trigeminal Neuralgia. I'll link it for you below. I need to do another "facing the camera" update video as I've met with a new neurologist here in Florida since we moved here from Oregon a few months ago. I have an appointment with a Neurosurgeon at Orland Neurosurgery in a few weeks so I'll probably wait until after that appointment so I can share what I find out. Thank you again for watching my video and I hope that they help bring some sort of comfort/information to your cousin and family and I am always here to answer any questions or be a support in whatever capacity I can via the internet. Take care : ) Link to my TN/AD video playlist: kzbin.info/aero/PLMgyDqJade4zVir2FJ6Nxz6llEYjovxGM

[@Ninjasnail1926]

I have TN. I just started having severe pain on right side of mg face up to 15 times a day that lasted on average a hour out the blue one night. hit me full force from 8 to 10 times a day on average for a hour right out the gate. I almost lost my mind. Pain was so bad, and lasted so long i would end up screaming uncontrollably. For 3 years i had no voice. I was hoarse all the time from screaming in pain. Id be dripping with sweat head to toe when it finally quit. Been 4 years now. Last 3 months are finally better. I had mvd surgery about 18, months ago, balloon Compression surgery a year ago. When i had mvd surgery, they found my blood vessle wore a hole all the way through my sheathing on my nerve. Nerve was bare in a fairly large area. It took 18 months to start feeling relief.. Id given up hope when pain eased up finally. I am not pain free. now, 95% of the time i can quietly ride out pain. Its miserable but i can cope. I do cry still a few times a month its so bad. Beats crying up to 15 times a day for a hour every freaking day! Mines on right side. Affects roof of my mouth on right side, top right jaw teeth, right sinus, right side of my nose, right eye, cheek bone, jaw, temple amd forehead. Sometimes i skip pain and go a day without it. Sometimes 2 days. But i mostly still have pain i can tolerate daily. Im hoping it keeps getting better. I just want no pain. No medication ever worked for me. Sorry anyone has to live with TN. Its a nightmare. TN takes Everything from u. It strips every thing u are away. Their is nothing left of u or your life when TN strikes.

[@ladonnayoung2543]

just came across you're video after researching trigeminal neuralgia I had it for years unknowingly but just got diagnosed I'm 2019 just had the glycerin rhizotomy yesterday still have to take my meds for a week the dr told me so hope this pain goes away GOD bless you and pray that you are pain free now

[@Krissy-Amber]

Hope you're ok

[@cuttinup97]

Where is your pain/pressure?

[@jennatalks3399]

I have TN1 and TN2 bilaterally in all three branches. I'm also allergic to tegretol. I'm not a surgical candidate, though. Prayers for you.

[@sunnyvibes8528]

TODAY is 7/18/23 - and I found your video as i suspect I might have TN. Only had 1 episode of whole-face pain eyebrow bones, temples, jaw - cheeks. after self massage i realized my left cheek (apple) was hot & measured 100• on digital. Tylenol helped a lot. I have not had any recurring event. I am curious about YOU and how you're doing, now 8 years later. ❤

[@bryanlondon4802]

Thanks for sharing. Just had MVD this past Thursday

[@NaeNaesCreations]

Tyfs so much my bestfriend was just set up for surgery next month for tn as well she is the toughest person i know and it has really afected her so much i couldnt just imagine what u have been through good luck and god bless my prayers are with u hugs Nae Nae

[@PurpleCottageCrafts]

Thank you so much Renea...I will say a prayer for your friend for her upcoming surgery/recovery. Hugs!

[@babyydoll26]

I'm currently struggling with this pain. It's the worst pain I've very had in my life. It gets unbareable to the point I just sit and cry , unable to sleep or even think straight. I went to doctors a week ago and they said it could be my sinus he to.d me to steam my face and see if it gets better. A week later and it's only getting worse. I'm taking 60 mg codine 4 times a day and today the painkillers havnt worked at all I even resorted to taking double the dose of codine. It's absolutely killing me. I'm on my way to hospital now to see the doctor again I can't cope x

[@PurpleCottageCrafts]

Hi Ashlee...I am so sorry that I'm just now replying. My heart broke after reading your comment. I can totally relate to the pain and feeling of wanting it to go away so badly. I know this comment was a few months ago but how are you doing now? Have you found any new ways or medications to help you cope with the horrific pain? I just did my 1 year update if you're interested in checking it out. I'd like to a a support person for you since we are all in this together. Hope to hear from you soon. Take care and let me know how you're doing.

[@barbibutton9619]

My 89 yr old mom has suffered for about 8 years now. She's been through all types of treatment and procedures - radiation, Botox, painful injections, pills, acupuncture 2-3 times a week. She was to have the surgery but while waiting to go into the operating room, the surgeon came in and said didn't want to do it because of her age and some other situations but anyway so she's still suffers from it but I just found this new video about a procedure from the Mayo Clinic that I'm going to call. Here's the link - it's the 2nd procedure mentioned. Also somebody in the comment section on that video mentioned minerals & vitamins that helped them.

[@kelviannaepperson3677]

I have cerebral palsy and have recently been diagnosed with neuropathy but the specialist said it was polyneuropathy and it is spreading up to my face. Oh my I totally understand. Glad for your good experience with a great attentive doctor

[@alexmolina6948]

What are your symptoms please let me know

[@kelviannaepperson3677]

@@alexmolina6948 sharp stabbing anywhere widespread numbness burning dizziness pain in inner ears and tremors sharp pain in my trachea watery eyes and increased blurriness

[@alexmolina6948]

Do you have TN

[@kelviannaepperson3677]

@@alexmolina6948 yeah I get numbness on both sides and sharp pains in my jaws I also have tmd my jaws pop out

[@alexmolina6948]

What is the difference between tn and polyneurarhy and what treatment have you received

[@bhaskergowda2203]

You can get operated no problem make sure you get the best hand to operate May God bless u .

[@PurpleCottageCrafts]

Hi there : ) I had an amazing Neurosurgeon at OHSU in Portland, OR. He is the best on the West and I was super lucky to have him preform my operation. Thank you for your comment...I appreciate it so much : )

[@PurpleCottageCrafts]

Oops...I forgot to mention his name before I posted my reply. His name is Dr.Kim Burchiel, Chief of Neurosurgery at OHSU in Portland, OR :)

[@lisamalterud]

Thank you for sharing a very personal story...i could tell it was hard for you: ) i will keep you in my prayers and i hope you have a a great outcome with your surgery and you will keep on doing what makes you smile : )

[@PurpleCottageCrafts]

Hi Lisa thank you SO much for your sweet comment. It's been a rough year since my surgery hence the super late reply. I just uploaded another update video if you're interested in hearing how I'm doing. I appreciate you stopping by. Take care and thanks again 😊

[@iballslide7604]

@@PurpleCottageCrafts how are you now?? Is mvd worked or not??

[@bcdoula]

Hi Abby, I am so looking forward to hearing from you and getting an update from your MVD.I have TN 1 and was just diagnosed with TN 1 on both sides. My MVD worked very well on the left side so Im optimistic.

[@Piranavan_Sharma]

@Ron Krikorian r u tn patient?

[@Piranavan_Sharma]

@Ron Krikorian what she took and what u took?

[@Piranavan_Sharma]

@Ron Krikorian I'm from india. How is it possible to cure Trigeminal neurologia by these vitamin tablets? Where r u from? Can I get ur phone no?pls

[@Piranavan_Sharma]

@Ron Krikorian I have trigeminal neurologia for 16years. I'm in hell ..Pls help me I need some clarification. Can i get ur phone number or mail id?

[@Piranavan_Sharma]

@Ron Krikorian s. Blood vessel is compressing the nerve. Already I underwent surgery. But again the same problem came... 😭 I heard about Indian actor Salman Khan underwent mvd in los Angels. Which one is the best hospital mvd. And tn?

[@trushandae9649]

Abby unfortunately i know your pain i have been going thru this since march, i went to the dentist thinking it was a bad tooth i paid over $2000.00 out of pocket to have 3 teeth removed. My pain was only getting worse, the dentist reopened where he pulled the teeth from(lower jaw wisdon tooth and the 2 teeth in front of it) and shaved the bone, thinking that would releive the pain, it made it much worse finally the dentist told me there was nothing else he could do and sent me home with percocet.....you know and i know it does nothing!!! This week i went to the emerbency room because it went from periodic to 2 hours straight of unbearable pain. From the ER they reffered me to ENT, the ENT doctor has ordered a mri with contrast and he refered me to a neurologist who i will see after the mri. I am 37 and a single mother, i am so overwhelmed all i do is sleep and be doopy from pain meds, i have missed so much work and im just tired i have a 8 and 11 year old daughter. They see the difference in me. I am very depressed and anxious all of the time.The ENT doctor also said that since it has progressed to this point they may want to go straight to surgery. Its very debilatating and depressing.....

[@PurpleCottageCrafts]

+Trushanda E Hi there. I am SO SO sorry that I am just now replying...please forgive me. I am sorry that you too have been going through so much and finding dead ends when it comes to various medications. Yes, we certainly both know that Percocet does not help with our pain at all. I know this comment was several months ago but I'd like to hear how your appointment with the Neuro went and what your plan is now. I have been a single mom of two myself for several years before I met my 2nd husband. It is not easy and there are many challenges to face when your a single mom so I cannot imagine going through this TN pain when I was a single mom. I have to applaud you for I know without a doubt how strong you really are.

[@PurpleCottageCrafts]

+ScrappinAbby I had to break this into two parts...sorry about that. Here's the rest of my reply to you: My kids are now 16 and 20. My oldest is off in college so we just have our daughter at home right now. I am sure your children see a difference as we know TN affects every single aspect of our life. I want to reach out and be a support to you if you'd like. You can always private message me here on KZbin or send me an email to: [e-mail] We are all in this together so I think it's important to support each other as much as we can. I have also found some fabulous online support groups that I can share with you if you are interested. Please reply and let me know how you're doing ok? Hugs to you!!!

[@RobinMuddSimpleDesigns]

Thank You for sharing with us. hugs from Ky.💟

[@barbaralynch3015]

Try this - take Magnesium, Vitamin C, B Complex, and Vitamin D. I was able to get off of Gabapentin completely, and am now in remission. It started to work after about a month. Try it please - you have nothing to lose but that excruciating, debilitating pain!

[@rockway63]

Barbara I too felt lead to get Vitamin B Complex and Niacin. My thoughts went to the metals we have in our blood. Either too much of one or not enough of another. Transition Metals they call it?? I just started the vitamins a few days ago. Even bought potassium because I've been so quick to get muscle cramps the last few years. I guess I'll give it time and see if it helps. =)

[@barbaralynch3015]

911Truth Now1. Magnesium 500 mg. Vitamin C 500 mg, B Complex Vitamin D3 1000 iu. Red pepper is helpful too, as you mentioned.

[@barbaralynch3015]

911Truth Now1 Just pick a B Complex Vitamin. It has too many vitamins and minerals to list. It took about a month of all of this to feel relief. Please, please try this!! Believe me, I was in total agony! Now I don't even know that I ever had it. You have nothing to lose but this horrible pain hopefully like it worked for me!

[@samanthamelendez8851]

The b 12 helps! I made a Dr test my B12 and sure enough I'm deficient.

[@barbaralynch3015]

@Ron Krikorian - My fellow Armenian - Oxide!

[@mosquedasam]

Thanks. Me too. So thankful. I hate to pay for emergency bill. And the dental bills or the teeth lose. Worse pain ever. And I broken bones and separated my shoulder before.

[@rsp624]

Thank you for sharing. I have been suffering from TN1 since Nov ‘17. Maybe longer as I was having what we thought was cluster headaches before the zone 2 presented in my cheek. I responded for a while to different med “cocktails” but some side effects rash, extreme dizziness, nausea, headaches on right side, break through pain...causing me to fail them. I am now seeing a neurosurgeon who said if I flare up again to go right back. Well this past 2 weeks have been the work yet as it has now presented in zone 3 through my tonsils, back of throat, and top of esophagus. These pains are even worse and triggered by drinking, eating, taking meds, breathing cold air. I have tried working from home as much as possible but some days I am in flare ups up throughout the day and into the night. My Dr is unfortunately of office for another 3 weeks before I can schedule next steps with him. He has already agreed I am a candidate for MVD and I look forward to getting a surgery date. I hope I can make it through as every moment feels like a struggle. Best to you through this journey.

[@iballslide7604]

Any update?

[@debbiehoward4957]

Hello sweetie. I hope you are doing well. You are so courageous and I hope you are doing well now. I look forward to more of your crafting videos......they really do inspire me and others, I'm sure :)

[@PurpleCottageCrafts]

Hi Debbie! Thank you SO much for your sweet comment. I am doing okay today, some days are better than others. I can tell you that living in Florida has certainly been more of a help regarding my facial pain than when I was in Oregon. I was born in raised in the same small town in Oregon so I love that state for sure. But the cold weather, rain, ice etc. is really bad for my facial pain. I would have to cover up my face every time I stepped outside, even to just get the mail. The warmer weather is wonderful. I am really getting back into more of my crafting than I was this time last year for sure. I still struggle and have my days where I'm in bed for no less than 2 days at a time...seriously. So, I take advantage of my good days and craft like crazy : ) it truly is my therapy. I appreciate you saying that I inspire you...that is the best compliment a crafter can ever receive in my opinion. Thank you again for taking the time to watch my TN videos and my crafty ones as well. I will be filming an updated TN video here soon. I've been to a new neurologist here in Florida and there's a new game plan to help me with my pain so be sure to watch for that one : )

[@cookimonster9101]

just had my 2nd pituitary surgery and was told from a different nuergurgeon and they said that i have trageminal nuoeriga.. i still dont know how to spell it. no drs will listen ive been to three different hospitals. im on gabapentin at 300 from one dr. another dr thinks i have a sinus infection so im antibiotics. was told from another doctor to start toteral. really dont know what to do anymore.

[@MOVE2023]

I wish there was an update ❤🙏🏽

[@allanlumba4973]

Hi Abby I’m happy for you .. you get your life back ..

[@lindahammond7759]

I had MVD in May of this year. I have Anesthesia Dolorosa like you. Can you tell me if you had a pain pump or pain stimulator? I watch a more current vlogs and you looked so much better.

[@tamrynmihaylo-hynes4193]

Thank you for sharing you! Blessings from the Willamette Valley! 🤍

[@Joejoh2010]

I need help with this if anyone have tried anything new and it's working. This is Painful Painful Painful

[@cghrios783]

Vi lia I want to share this with everyone who will listen. I was diagnosed with TN a year and a half ago. I see these videos and i cry because those people were me just over a year ago. I thought i'd could not go on like that. I went to several drs and seek treatments took so many meds and did not find any relief. I was told there's a couple of treatments ( numbing the face nerves or killing them with gamma knife and a surgery to decompress but none of them are actual cures that they work for 6 months to maybe 2 years after which you have to redo the procedures. I tried cbd oil which in combination with all the other meds took some of the pain away but then i had to up the dose. My own voice would give me pain.! I was depressed and desperate then my friend told me she has gotten better from this pain she had suffered for two years that the pain would make her scream for long periods of time. She said she had gone to a homeopathic doctor. At this time i was willing to try anything. Theres only one doctor in the city where i live. Her approach was so different than a regular doctor and when she gave me the medicine i felt so discouraged but i told myself what do i have to lose i started to take it faithfully and to my amazement it started to work. I had to go to her a few times to adjust the dosage but im 90% pain free. If anyone reads this please give yourself a chance and find one. Im told there's many of them in Europe and India. Here im not sure but i am proof it works. May God give you the strength to take a leap of faith.

[@Joejoh2010]

@@cghrios783 Thank you for sharing this!! Someone told me today to also have faith with anything I try doing to take the pain away which I do!!! Its getting worse and worse and I'm scared!!!Thank you again

[@cghrios783]

Vi lia Thanks for your message. I can tell you are desperate. I was also desperate and scared that my life would not be normal again. Please if you have tried different things with no results maybe you can do a search in your area about homeopathic doctors. Find a dr who does not treat with other modalities because you want a true homeopathic doctor. Please let me know. I hope that u find an answer too.

[@Joejoh2010]

@@cghrios783 Thank you so much. I will find that and let you. Thank you so much again. I'm so desperate, depressed, anxiety is kicking in. 😥

[@haloSrising]

Vi lia Did you find any relief I’m going through this right now and it’s killing me slowly Desperate for any help I’m missing a lot of work because of this pain

[@jencgold]

Thank you for sharing. ❤️❤️❤️. This helped me. Prayers for you.

[@monicachiyangwa3092]

I am sorry you are going through this pain, i know how you are feeling because i have the same diseases. i am still on medication and struggling. i would want to know how your surgery goes. Good luck on that.

[@SHALINISHARMA-qv9lx]

Hi I am from India...28 yrs old..diagnosed with TN 2 years ago....I am planning for surgery because my doctor suggested.....I hope you are doing good...after seeing your video it gives me a little courage because I am really scared of getting the surgery at the same time I am just pissed due to TN

[@V1VAMORE3]

Hi shalalini did your surgery go well?

[@iballslide7604]

How are you Shalini now??

[@apehcollitrop6917]

Thank you, for sharing this🥰 TN IS SOO PAINFUL

[@bhaskergowda2203]

Hi girl i have got TN from 17 years and l am fine with tegretol

[@PurpleCottageCrafts]

Hi there : ) I'm sorry to hear that you also battle TN...but I'm glad to hear that Tegratol works for you. I was really hoping that it would for me as I didn't want to have brain surgery. It always baffles me how the various meds and surgeries/treatments for TN work for some and not for others. I'm still praying and holding out hope that a cure will be found one day, preferably sooner than later. Are you in any of the TN support groups on FB? Thanks for sharing with me : )

[@3asyrider75]

Tegrotol worked for a few months and not working too well now. Keep building tolerance to meds.

[@davidgruesbeck5040]

Im a AKA Right sight. So when I buy Socks, I get two for price of one

[@wendyragle7187]

Thank you. I needed this. Not sure if this is what I have. I have lyme as well. Terrible pain

[@doghairdontcarelindaniel7531]

Beautiful queen. Thanks for sharing an touching many people. God bless you. Love from Houston sept 2020

[@harleygirl4life6]

I too have TN & put my video about my journey of TN UTube too. I know my exact date too April 3 2003 at close to midnight it all began. It’s a very hard road. Surviving thru T.N & all that comes with it. I hope for all of us with TN we have a cure soon. The nerve graphs I heard of recently give me a small amount of hope that maybe one day it can be applied to TN & take this agony from all of us. I’m also on high Gabepentin 800 mg 3 x a day along with lots of other things . Thankfully you get use to them over time. Then they aren’t so sedating , baclefen did nothing for me. I know I’m slaughtering those med spellings!! Lol I moved from Chicago to the SW just bcz of my TN. That helped so so much. I hope you also have more good days than the bad my friend

[@ronaldkrikorian7054]

How are you doing now? I also had it & I took vitamins & minerals and finally the pain is gone!

[@PaperTerrace]

Oh wow! Just realized we live close and started watching your videos which led me here...my mom has TN and sees dr burchiel. Small world. Back to your videos haha

[@Piranavan_Sharma]

Who s dr brucheil? And where is he? Pls tell

[@tyraprade2593]

I'm dealing with TN it started in August and it stopped in September came back in October for 2 weeks. It came back in January and I'm been dealing with it for a month now. Very painful!

[@bronicaloglesby3610]

I have this condition as well and the pain is indescribable

[@TheGreenFlamingo717]

Sending you positive thoughts and prayers!

[@PurpleCottageCrafts]

Thanks so much...I appreciate your prayers and a year later I still need them. I posted an update video on my channel the other day if you're interested. Take care and keep on crafting my friend 😊

[@kirstyallen3529]

It hurts so much when it starts x I'm 6 months pregnant with 3rd baby and have stopped medication for the nuralgia till baby born . Do u know of any other ways to cope please xx hope u get urs under control x I've had mine for 2 1/2yrs now and it's still a struggle to cope with😘

[@mmlarson8304]

Hi I am wondering how you are now and how did the surgery go. I am suffering right now with TN , thank you for sharing .

[@ClaudeFeely]

Hi I'm claude I'm 51 and was diagnosed with trignomical neugria in the ed room I started losing weight back in August I lost 50 pounds quite fast didn't eat much but anyways about 5 months ago I was feeling the lighting bolts burning in my face and light bolts in my head so I was referred to a dermotigist and they said I had dermititis but about 3 weeks ago that's when I was diagnosed my the er Dr now I see my primary Dr and see a neurologist in April I've been on gabapentin for 4 months and really hasn't done much for me 3-25-24

[@yaraviera4444]

My prayers for you. It's a pretty much miss understand síndrome. I been dealing with this excerpted that is both occipital an trigeminal neuralgia..

[@anothercampervanchannel]

I don't know how you are now (hopefully better) but it might be worth you reading a book called 'When your Body Says No' by Gabor Mate, if you're still suffering. It's about the link between physical and emotional issues, particularly chronic issues. You sound like a very busy person-this seems to be a common factor (well stress anyway). And interestingly, we can be stressed and not even realise it, i.e. it's having an effect on our body and we don't even realise. Anyway, just thought I'd share that with you and anyone else who sees this comment. It's a very insightful book.

[@abigailbarfoot3846]

Abby I have the same thing bilaterally. TN is the most painful thing I ever experience. I have been lucky being in the uk and having doctors who listened but also have knowledge about. TN. I’m waiting for mri as they are thinking it could be MS or an artery Or a blood vessel loop. I’m never been in so much pain and fatigue is terrible. I’m on oxcabazapine and paracetamol not really but need to give it time as there is a 16 week wait for an mri.

[@francescobar9052]

My TN was misdiagnosed for quite some time, too. As the pain centered more toward the jaw than to the ear, I thought it was a tooth problem and a dentist removed a perfectly healthy tooth before - finally - an MRI revealed the real source of the pain

[@elizabethkaplan1823]

Francesco Bar - I had root canal molar extracted July5 ,next step MRI --are you doing any treatments??

[@heostevelady]

@@elizabethkaplan1823 I got 2 root canals then got the surgrey on the left side. 6months later have some tingling but they said few more months should go away. Then found out have it on the right side getting surgrey in November. I’ve done injection they don’t work. Cypher knife leaves your face burning. Should get the surgrey wasn’t that bad

[@kennethsimon9540]

Hello... How are you doing now❓🤔 Hope all is well.... I suffer from TN myself. I'm still on meds, But that's starting to not work anymore. I'm contemplating surgery 🤔 Can you give me an update please 🙏❤️✌️💯

[@aeron159]

i hope everything went well and i hope u are better now. but how did u control the pain in the mean time before the surgery? im in intense pain and nothing is helping.

[@cookiee5272]

Take a tsp of hemp oil ,Ebay 17.99 on sale, it was more when I bought it. Another thing that helps is turmeric or raw garlic,but hemp oil helps the best.