I suddenly had TN while showering one day, 5 years ago. It felt like knife blades ripping down the right side of my head down the right side of my face. I was and still am a very healthy person who exercised, ate a Mediterranean diet, no alcohol, no sugar, 5’ 7” and weigh 125 so in great shape for my age @ 63. I am on NO medical scripts and never have been. I had this pain for 3 weeks then it stopped. I did go to my GP at this time who had me do an MRI. MRI came out NO TN but showed some small markings of white mass in my brain. I did mention to my GP that I had the Oral Herpes Virus and would occasionally break out with a blister around my mouth area. I told him I had read the Herpes can cause TN and his comment was, “that may be true”. This GP, as I found out, is a doctor who pretty much knows nothing and is a lazy doctor who rushes you out of his office with no info. He then sent me to a Neurologist. I went to this appt with my husband and this wacko doctor made fun of my “white mass”, making jokes and telling us non essential stuff just wasting our time. My husband and I sat there in disbelief hearing him talk. So the bottom line here is that when I got fever blisters they lasted for exactly 3 weeks which is how long this one time TN lasted. I have gotten fever blisters again over the years after that TN episode but never the TN again thank goodness. I did find out from reviews of this Neurologist that others had the same joking from him and walked out of his office with no answers like my GP. I wish I had my wits about me and told him off. NEVER AGAIN will I put up with these kinds of doctors. Don’t put up with doctors “gaslighting” you who are clowns and jerks. Be your own advocate and do research.

My pain started randomly one day when I was 22. I went to wash my face and was hit with this horrible episode of pain, I was screaming and grabbing my face just for it to go away just as fast as it came. Happened 60 more times that day and I ended up in the er where a young doctor came in and said he thought it was TN. He was right, I had a compression that was later fixed via Mvd. The pain truly is hard to describe to people. So thankful I was fortunate enough. The surgeon said my nerve had so much scar tissue from the constant contact but couldn’t tell me why it suddenly started to happen. Medical mystery.

Unfortunately my niece had suffered from TN. After trying all the other alternative procedures she chose to go to California and have MVD surgery by Dr. Lim in 2019. The surgery was a success and she is a very dedicated advocate for the MVD surgery.

This has been a great video on this very painful condition. Just an observation that Kevin interrupts too often enough that dr. Hoeflinger doesn’t have time to fully comment or say what he needs to say.

Was diagnosed with TN and a small aneurysm on the same side several years ago. It took a MRI/MRA combo which took 2 hours lying flat (misery 😫) to get the diagnosis. Started on trileptal which I had to use very small dosages of to get used to so the redness, burning and itching in my hands and feet would go away. After my body adjusted to it, it worked well but I had to have PRN doses when my TN flared. Sometimes it flares so badly (especially in the winter months) that I cannot do anything but cry 😭 and lie down all day. I was switched to tegretol a couple months ago per my request due to the cost of the trileptal being so expensive (I am disabled and on a fixed income) and was hesitant to switch but it has done well for me so I am happy with that. I had been given the option of the last surgery you spoke of early after diagnosis because I had one episode that was so severe (the worst I have had in all my years with this) I told them I would let them do surgery without anesthesia at that point. Thankfully, I got through it and the medication has been working to mostly keep it at bay. I was so excited to see your podcast on this! Thank you from one medical professional to another (I am a retired RN).

Again, this was a very interesting subject. If I should ever develop something like this I now know my options in treatment. Thanks Dr Hoeflinger.

Hello Dr.Hoeflinger nice to find you on KZfaq I follow your Tik tok account. I have had two bouts of trigeminal neuralgia and it is honestly the most excruciating pain I’ve ever felt. Like intermittent electrocution! This pain sends people running to sign up for surgery! Anything for relief! Hopefully in the future we can discover additional effective treatments! 🙏

Thank you for sharing your knowledge and wisdom, your transparency is greatly appreciated. I am a retired RN who would have loved to serve with you and Dr. Ben Carson (I worked PICU during my "journey " God Bless you and your family.

Very interesting! My deaf friend has TN. She has a cochlear implant and her neurosurgeon says it’d have to be removed to do surgery. She’s so discouraged. The wind really sends her into a flare. Sad!

An important indicator for diagnosis is it's usually ipsilateral. Terribly painful. Microvascular decompression worked for me. So far.

I’m having the worst pain in my right side face I’ve seen a Neurologist only she does just put me on Carbamazepine and Pregabalin but it doesn’t help me feel better

Hi again--there are typos in your image in Trigeminal and Neuralgia.

It's hell!! No one understands or knows what to do. You say that you don't have to live with it but it takes a million years to get the correct DX (even saw the guy who "wrote the Bible on TN" in Portland, OR at OHSU) but he said I didn't have it, but I have TN1 & 2, AND BILATERAL!! Ding bat!! He was doing a stupid study on it and he misdiagnosed me. God help us!! An oral surgeon correctly diagnosed me and my neurologist. It's like we have no choice but to "live" with it. The MRI didn't show anything. Maybe it's something going on in my 1st or 2nd vertebrae after 2 rear-ended car accidents in 1 week, or maybe I have had it for 2 decades after half of my teeth have been removed 😬 for nothing as the pain remains. No one gets it, unless they have TN. It's unbelievable 😳

My pain shoots up into my head. I also have left sided facial numbness that goes with it. I have had sooo many MRIs, CTS, MRAs, lumbar punctures, everything comes back normal. Over the years its gotten worse. The pain gets so bad it makes me want to pass out. Oxcarbazipine is actually working. Not fully, but its barable. Gabapentin did nothing. Please explain why an MRI would be normal but you still have these symptoms. Can this cause u to have ear pain? God bless you for all u do.

I will never that pain in my twenties. Nothing worked until I had all my amalgam out. It worked. But not until I banged my head against the wall for hours as the shot of pain began. The cold wind was a killer.

Fascinating... Specializing is important to improve outcomes with knowledge. Unfortunately here, when your cord needs to be opened up may speak to a neurologist but rely on the orthopedic which I find scary.

I have Electric shocks all thru my abdominal area. I have nerve damage. It is so painful - have been doing ablation surgery and it has stopped until the nerve grows back. 😔 It causes so much pain that as a female my life is destroyed. Love your channel PeaceAndLove Lori

A good friend of mine got trigeminal neuralgia as a result of shingles. He also has post-herpatic neuralgia. This caused him to be completely disabled and unable to continue his work as a successful columnist for USA Today. He continuously urges people to get vaccine against shingles. My friend has had several brain surgeries to implant and fine-tune pain-relieving items. This is sometimes helful but he's had to have surgeries to reset it. I feel extremely sorry for him, and am amazed that he still goes along in his very restricted daily life.

After 4 MVD's I still have it, but do advocate having the surgery. There are success stories.

Suffering from Trigeminal Neuralgia can be overwhelming, but Planet Ayurveda’s treatment has made a huge difference in my quality of life.

Respected sir, just try to imbibe your energy and passion for surgery , I am also surgical aspirant from India trying to get into neurosurgery institute here , sir , just one thing which bothers me , I'm 35 yrs old and suffer from ankylosing spondilytis , till now I have handled it well , sir will it be a hindrance in future for pursuing neurosurgery, sir your expert opinion will motivate me highly

I have TN as well. On Carbamazepine Rx & so far it is stopping the episodes. However I do not want to be on meds indefinitely. I would like to get a surgery that helps long term. I'm in Ohio NE. Any suggestions?

Would TN make your jawl lock and horrible pain. I have had both jawls broke in mid 70s, also lamimnectomy of cervical 4,5,6,7 in 2002. ENT wants brain scan , would this show TN? ENT wants to rule out cancer. This started over a year ago after dental procedure changed my bite. So painfull for 2 weeks, he was trying to help so i don't blame him to be clear. I also have other problems. Seeing a Neurologist

I have Trigeminal Neuralgia type 2.It's a burning kind of nerve pain.That is triggered by chewing food and sometimes just opening my mouth.The doctor put me on Pregablin 75 mg 3 times a day.The pills take away some of the unbearable burning pain.But in all honesty they are useless.

I get electric shocks up the sides of my neck if I move my head to fast or lay the wrong way and it hurts so bad I cry

I have MS... my (fired) neurologist brushed off all of my concerns about my trigeminal nerve pain and told me it is a "fictitious disease only hypochondriac have". Then proceeded to tell me the lesions on my brain were freckles due to aging. I'm 41. Diagnosed at 25. I am on gabapentin and duloxitine thru my PCP. My TN pain is debilitating despite medication. My attacks last about 30 minutes at a time but it feels like eternity. The pain feels like glass shards being melted into my face and being smashed by a bowling ball. Left side eye socket, top jaw, cheek... I am seeing a new neurologist soon 2 hours from me and hope for the best. I've been without treatment for the MS for 4 years now. Will ms treatment make a difference in the Trigeminal Neuralgia?

Hi Dr. Hoeflinger! Awesome content. Dropped you an email.

So sad I cannot afford the payments monthly to join as I am retired

WHAT CAUSES TRIGEMINAL NEURALGIA???

There are 2 typs of TN and you only talked about 1