Tips on living with trigeminal neuralgia 2024 | careful with Internet info!

[@alexandreturgeon465]

I needed to hear this. Thank you ! Having TN and health anxiety, I can easily say that searching around the internet can be a really dangerous thing for one's mental health. I try to stay as far away as possible. What you often don't see on the internet, is that a lot of diseases/conditions have a spectrum so you might not always be as bad as what you read.

[@Letsfaceittogether]

Yes, that right. Glad the video has helped.

[@BonnieDavis-xk7zj]

What great advice!! I enjoy your calm, honest approach to your videos. I just found your channel and plan to go back and watch all of them. Thank you for sharing.

[@Letsfaceittogether]

Thank you so much Bonnie 💓

[@patriciaroberts4224]

Hi,never look at the internet it's doom and gloom, I've learnt that over time.I think I am finally on the road to recovery after 2 years. Your channel has been very helpful 😊

[@Letsfaceittogether]

Thank you, Patricia. ❤️

[@jamesatkinson7691]

This is exactly my experience on diagnosis: I focused on Dr. Google and all the clinical catastrophizing that comes from many medical sites, but out of sheer desperation I gradually moved away and into the neuroscience of circuit pain and brain plasticity, and I've felt considerably better in doing this than persisting with the orthodox medical mantra of "live with it and medicate".

[@Letsfaceittogether]

I'm glad you've found the path that works for you James

[@Lizzi31]

@@Letsfaceittogethernever listen to Google, it’s Tegretol, gabapentin all pain killers and they don’t tell you about the side effects, and all the surgeries they can offer.

[@1979ACR]

​@@LetsfaceittogetherI'm so glad I found ur channel. My husband just this past week has experience these symtoms. We made a dentist appt BC we thought it was his teeth. They did xrays and not his teeth. So we went to urgent care the next morning and his doctor mentioned it maybe TN. So we are just starting this journey. We still don't know for sure if this is what it is. Thank you for your videos.🙏

[@daviddownes1502]

Thank you so much this was by far the most useful information I've had, best wishes ❤

[@Letsfaceittogether]

That's great news David. 😀

[@CharmeineTomsen]

I am not yet diagnosed, but suspect this is an issue for me. I have a cousin with the most severe form who required surgery to reduce her pain level, so my fear was grounded in her experience. You video has done wonders to reduce my sense of fear and has given me hope that all experiences are NOT the extreme. Thank you.

[@Letsfaceittogether]

Thank you so much. I'm glad that the video has helped you x

[@lolavex]

Thanks I needed to hear this message today!

[@Letsfaceittogether]

Glad it's helped!

[@marydelware7162]

I have had it for 20 years, but recently I found a Dr that treats this much differently them Medical Drs. it is Atlas Orthogonal Chiropractic,they deal with the nerves in your neck,where the pain can come from certain nerves. No cutting of nerves.I have had no pain for a weeks and I have felt great,go for treatments as needed

[@Letsfaceittogether]

That's great news for you Mary.

[@Iamranasameer]

Wow but can you tell is it helpful if someone have neurovascular contact in mri and do you have it??

[@madisonjanezyluk5116]

Great video! Touching on so many parts of the journey

[@Letsfaceittogether]

Thank you ❤️

[@RuseMediaVideo]

I hospital with this all day yesterday, and this video has calmed me down a lot. I'm 37 and this came out of nowhere, never been in so much pain, today so far it's mild. But thank you for your info x

[@Letsfaceittogether]

Sorry to hear 😞 😢 you've had such an attack of it. Hope this stay calmer for you x 🙏

[@loisadams837]

I’m going to go thru Microvascular decompression surgery in 4 weeks. I hate all these medications I’m on and I’ve had TN for 9 years and it get worse every year with cold weather. Can’t stand this! Hoping the surgery takes this woo away. If I move to warm weather place I will miss the kids and grandkids too much .

[@Letsfaceittogether]

Hi Lois. 👋 I hope it works out great for you. I would miss my adult kids and grandkids, too. Sounds like you are trying a good option.

[@catherinewong157]

Hope it’s works. I know it took a long time to consider it. I’ve had it for 20 years and it’s getting worse. Medications aren’t working some I’m considering the surgery too.

[@Iamranasameer]

Any update ??

[@suzyashby1978]

I have itp blood disorder, one kidney , diabetes. Fibromyalgia, and I’ve had Tri geminal neuralgia for 28 years. It’s never lasted this long ! I’ve fallen etc. my poor husband had to pull me up off the floor. Thank you so much for sharing this. I’m seeing Kim Burchiel in Ohsu next month 5-2024. He’s one of the best

[@Letsfaceittogether]

All the best with your visit. Obviously we are all in different parts of the world, so your neurosurgeon isn't available for everyone

[@JaydonArrington]

I just got somewhat diagnosed with TN by my dentist seeing a neurologist in like a couple months they got me on a specific medicine tho. Wish me luck this pain is no joke

[@Letsfaceittogether]

I do wish 🤞 you luck!!!!

[@Lizwane]

I am on the very beginning of TN and have been diagnosed today, my pain level is mild at present but lm only 1 week in, l am a senior nurse so diagnosed myself earlier that most l guess but now confirmed with GP , to be honest l don’t know what to expect with the pain level, l am not on anything yet but Gp mentioned gabapentin as a first choice when I need it , I am absolutely devastated at the moment and feel as you mentioned like my life will be over ..

[@Letsfaceittogether]

Hi Liz, I'm so sorry 😞...it does feel like that at first. But things can improve in time with the right treatment. Check out the beginning of my videos, and you will see 👀 how much progress I've made.

[@bushycrib8732]

I was diagnosed by a dentist in 2017, had the same pain in 2015 both times only lasting 3 months then was in remission for 4 years. Came out of remission in 2021 that time had to start tegretol which makes me very dizzy but lowers the pain to some degree. I had noticed the remission phases getting shorter 😢

[@Letsfaceittogether]

Really sorry to hear things aren't as good. Hopefully you can experience remission again ❤️ 💙 💜

[@suemoore3118]

I developed this pain after I saw a chiropractor and have been in agony ever since! I’m waiting on an appointment to a neurologist. I’ve been to a chiropractor before but this was a different one I went to and he had no idea why my jaw hurt afterwards.

[@Letsfaceittogether]

I’m so sorry to hear that Sue

[@suzyashby1978]

Yes ! I’ve same due to my itp blood disorder one kidney diabetic type 2. I have Ichemia in the brain. I’m very grateful you’re telling your story. I’ve found that talking on the phone doubles it.

[@Letsfaceittogether]

You have a lot to deal with, I hope you get some help for TN

[@Iamranasameer]

Hi how was your tn now and did you see kim burcheil and what he told and what was in your mri

[@suzyashby1978]

I have it. Upgraded mri in fact ! Yes ! I’ve done that I had to stop Evening time would send me into spiral !

[@Letsfaceittogether]

Yes Suzy, it's hard to see the positive when you see so many sad 😔 stories etc.

[@Wolfarelli]

In case you haven't, maybe you could try visiting a biologic dentist (aka holistic dentist) to discard a Neuralgia-Inducing Cavitational Osteonecrosis lesion or toxicity problems from root canals or fillings; they could be the root cause of TN (and other cronic conditions) in some cases. I hope you get well, good luck!

[@Letsfaceittogether]

Thank you. I'm not sure they exist here! I'm sure that my TN is not caused by dentistry issues.

[@loisadams837]

I believe the surgery worked! I’m still waiting until they 1.:get me off the meds 2. Winter (that’s what triggers mine) comes next October. It’s only been7 days so far😀

[@Letsfaceittogether]

That's brilliant news 👏 😀

[@Iamranasameer]

Any new update ??

[@primroseedwards-williams242]

Without chat gbt and a dental hygienist is never know they gaslit me a lot

[@itsjudystube]

I have just been sent a hospital appointment having recently been diagnosed by a gp and two associate gps and three dentists. Calling it the suicide disease is very unhelpful. I take Amitriptaline 10mg per day that takes the peaks away. But I get drowsy. Other tablets I take mean that there is limited choice of medications. My gp and dentist have been wonderful. I find I am much better on Amitriptaline. My pain is bearable. But before that it was excruciating. Food can trigger me. Stress makes it worse. Talking makes it worse. Sometimes the pain is a red hot poker travelling through my upper jaw before going white hot and up into my right eye). Or it’s bee stings catching me out on specific teeth and on specific consonants. I can’t touch tomatoes unless they are tasteless ones Can’t do raspberries or strawberries. Chocolate Toffee Smoked bacon. Unsmoked is fine I can’t bite into anything so cut things up. Cleaning my teeth brings on nausea. The roof of my mouth gets sore. If I sit quietly drawing or reading in effect I have no pain. But swallowing can trigger it or drinking or eating or coughing or sneezing. I’m a talkative excited active people person. I can still do that as long as I hold my face🤣. I find the Spock Vulcan mind meld position works well although it can look strange. Two fingers alongside my nose, two up my face to the temple, thumb along bottom jaw to right ear. Sometimes rubbing my gums before I eat helps. My dentist managed to do a clean and check up without triggering it. I’m just so tired though.

[@Letsfaceittogether]

It is very tiring to deal with the pain. I hope things improve for you

[@suzyashby1978]

I wanna come live with you. I hope you’re doing okay now ❤❤❤❤. I have to wear cochlear implants. I can’t do all treatments. I’m excited to see this Neuro surgeon

[@Letsfaceittogether]

I hope you have success!

[@pra546]

Is the remission a reality? How does it happen? I mean how one identifies that he/she is in remission?

[@Letsfaceittogether]

I guess pain-free would be in remission.

[@IndrajitGhatak]

Sorry to say, but I would slightly differ. Knowledge is strength & there are many authentic information. I agree that we should not jump to conclusions. Combine this with the knowledge of experts & use your judgment. No one knows your body better than you, so read yourself well, trust your instincts & Allmighty will show you the way.

[@Letsfaceittogether]

You are entitled to your opinion!

[@GgGg-zp2fb]

Hey, i am experience trigeminal nerve pain in both side and in all 3 branches its more like burning in my jaw, tingling and some times episodes of sharp pins and needles feeling in both my ears, cheek and jaw but it Does not hurt its just annoying. I was wondering if it is start of trigeminal neurlagia or is it trigeminal neuropathy mri was clean no reason only a small retention cyst in maxillary sinus and i had sinus pressure two days before the symptoms startet it has now Been 3 months i dont feel like the symptoms is progressing. Can you help looking for answere dont know what it is had appointment with doctor they Said this is not like a typical trigeminal neurlagia and sent me home to wait 6 months to next appointment, im 20 years old going crazy beacause of these symptoms if it gets worse and severe tooth pain to, but dentist perfomed a rooth canal and it dissapered had injection in front teet. Hope you Can answer ❤❤ i dont have no trigger point either. I Can brush my teeth, shower, eat everything (cold and hot food) Can touch everywhere in my face nothing is triggering the pain.

[@Letsfaceittogether]

Hi, I'm not medical but I can say that normally TN is very, very painful. It could be the start of something like pre TN, but it's difficult to say. Often TN is only on one side of the face.

[@GgGg-zp2fb]

@@Letsfaceittogether is pre tn trigeminal neuropathy/ atypical tn2 or do you mean early stages of Classic tn?

[@Letsfaceittogether]

@@GgGg-zp2fb I’m not medically trained, so when I say ‘pre’ I just mean pre diagnosis and a build up of pain. For example, I struggled for many years with unexplained ear pain on the side that I now have trigeminal neuralgia

[@GgGg-zp2fb]

@@Letsfaceittogether idk, doctor Said since i have no compression on the nerves, and i have symptoms on both side and back of my head its problaby beacause of inflammation or beacause i was low in b12, they say beacause your symptoms have stayed stable its possible that the nerves heal or it stays the same we dont think you have Classic tn maybe tn neuropathy. But idk. Have to just wait and see untill next appointment

[@magdabasinski7290]

Hi how are you? I’m have the same thing like you right now. How are you feeling now?

[@camefromnothingcfnentertai4559]

That’s why I did when they finally confirmed TN and need MVD

[@suzyashby1978]

Please remember this name everyone. Kim Burchiel. Oregon Ohsu hospital ❤❤❤.

[@AmitKumar-to1ob]

Hi all, My mom also have trigeminal neuralgia.please suggest me what can i do for my mom.she is taking very high dose of pain killer.she has dizziness and vomit tendcy .only operation is the solution for this .i belongs to India.my family members sacred for brain operation.

[@Letsfaceittogether]

I'm sorry to hear about your mom. Just do the best you can to support her x