Trigeminal Neuralgia: Symptoms, Causes, & Treatment | The Hoeflinger Podcast 21
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- In this episode, Dr. Hoeflinger, a board certified neurosurgeon, and Kevin Hoeflinger discuss Trigeminal Neuralgia. This is a rare but extremely painful condition causing lancinating facial pain. The pain of trigeminal neuralgia has been described as one of the worst pain a human can experience.
They discuss a brief history of the condition, potential causes, common symptoms, and various treatment procedures. Tune in to learn more about trigeminal neuralgia.
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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.
I know. I have had that happen! I literally can't write the words here that I would like to write,how I feel reliving that experience. I myself, should have Complained to the State Medical Board. In fact, I still might, because they give you a long period to submit Official Complaints! Maybe you should do the same!
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.
Had MVD also thank God!
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.
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.
Mee too. I had it by the late Peter Janetta who created the surgery in early 70's
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).
Ismvd possible without anaesthesia
Suffering from Trigeminal Neuralgia can be overwhelming, but Planet Ayurveda’s treatment has made a huge difference in my quality of life.
Hi again--there are typos in your image in Trigeminal and Neuralgia.
Eye catching discrepancies SPELLS great ADVERTISEMENT ❤❤❤❤❤❤SISTERemembrance ❤❤❤❤❤❤❤BrotheRELAITABILITY❤
You left the "N" out of "trigeminal" on the opening screen.
I worked for a physician that misspelled words often. He told me one day that his spelling was correct in the Latin form (which is what they used in med school) and that Americans spell them in their own format. Not sure if that's the case here but I thought I'd share 😂
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 😳
you got that right
I too had x-rays and it didn't show up. Once I was diagnosed with it the doctor told me there was nothing I could do and it would come back randomly throughout my life. I ended up going to a chiropractor and he told me my altas bone was out of place, pulling the nerve. After a few adjustments it went away. It tends to stay away for years until something happens like a dental visit that pushes it back out of place.
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.
Hello Dr.Hoeflinger nice to find you on TH-cam 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! 🙏
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.
I’ve had TN, for over 20 years, I got the glycol injection and it helped. But this now has worn off, and it’s back again. But what my point is, this is known as the most powerful pain known to man, but it’s the the least researched condition medically. And getting immediate help when this returns is virtually impossible, you have to go first to a doctor, then get referred, then wait for appointment, all this whilst the patient suffers, in pain, with what is known as the worst pain to man. More needs to be do to speed up the intervention when attacks happen.
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 Dr. Hoeflinger! Awesome content. Dropped you an email.
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.
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.
What were first symptoms of tn2 ?? Is burning mild or severe ?? Is it constant pain 24/7 without medicine or some remission is there . Details please
@@Iamranasameera year ago this time.I started to get mild shock like pain.And thought it was a dental problem where I had a root canal done on my jaw tooth.So I went to the dentist and had an X-ray done.Nothing showed up.And the dentist said it was a nerve.And then the pain vanished.A month ago it came back mildly at first.Then I started to get a server burning sensation on the upper left side of my gum.And if I touched my lips I would feel the a jolt of burning nerve pain.
It was unbearable 😭
@@GregHBrazil in starting too?? And was it constant or it go in remission ??
@@GregHBrazil mild means was it electric feeling or which feeling ND on painscale of 1-10 what was intensity of mild shock first TIME.and one month was intensity and type of pain same like first one experience.And last thing jolt of burning pain intensity and was it like a stabbing burning pain and for how long it remains
An important indicator for diagnosis is it's usually ipsilateral. Terribly painful. Microvascular decompression worked for me. So far.
If it's bilateral it is almost always associated with MS
WHAT CAUSES TRIGEMINAL NEURALGIA???
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?
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!
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
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 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.
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?
Wow! What a jerk of a doctor. I would question his degrees. Such a quack. Your description of what TN feels like is exactly how I would describe it. I hope your new neurologist is a real doctor who gives you help and does NOT gas light you as they say.
So sad I cannot afford the payments monthly to join as I am retired
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 get the same thing occasionally was hoping to see some commentary as to what causes that..
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
Brain scans will not show TN. Most of us with it had them and they show nothing wrong. It's usually a well informed doctor that knows what it is that ends up diagnosing you, usually after you've gone to multiple dentists and doctors that all say nothing is wrong.
Also, I don't know if TN would make your jaw lock, but when you have it you certainly don't want to move your jaw much for fear of triggering an episode. For me it's an intense dull pain that functions like several teeth aching, until it is triggered. Once triggered you want to die. It is excruciatingly painful. The pain stops you in your tracks. You can't eat, talk, brush your teeth, or comb your hair for fear of setting it off.
There are 2 typs of TN and you only talked about 1
Yes. I think mine is number 2
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
Lori, what kind of doctor did you see. I have the same
I’m so sorry you’re going thru the same thing. My anesthesiologist performs the ablation surgeries. A eurogynecologist is the doctor that caused the nerve damage and he cut through my abdominal wall. My test came out. It was horrible. I’ve had at least seven surgeries. Now we’re praying once my body starts functioning better that hopefully my brain will grow that nerve that was damage my brain will heal it. The ablation surgeries for me work. I have had eight ablation surgeries, and I get relief each time.. the damage that was caused in my abdominal area is just unbelievable
PeaceAndLove Lori@@suzanneseeger7903
My anesthesiologist does the ablation surgeries@@suzanneseeger7903
After 4 MVD's I still have it, but do advocate having the surgery. There are success stories.
Dad has had it 3 times too. Just wondering what are you exploring as the next step?
@MultiJinius I am giving myself time to heal. All 4 of mine happened within the Pandemic.
@@saraavvenire all the best with your recovery
Just letting you know that dad had a neurectomy in the end as nothing else would work. It has completely alleviated the pain but there is a portion of his cheek and inside of his mouth that is permanently numb. The surgeon preserved the nerves that control taste and smell. He is very happy with the outcome and quality of life. Just letting you and others know that at the very extreme end when all other procedure fail, there is this final option albeit at a cost.
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.