I personally suffered for 9 months with tn undiagnosed. I thought and attempted suicide multiple times. After being diagnosed. I broke down. Knowing what ive read about it. When youre in that much pain you end up doing days of research TN was the last thing i was wanting to hear. Im 29. Pulled 5 teeth in the 9 months i was undiagnosed. My mouth is in constant pain. I was pulling bone spurs from my mouth everyday. Life became a hell of sorts. Not able to go out on days its windy and im having what i call an "attack" but in reality its the medication failing. I have good and bad days now. Which is better than 24/7 hell. I always described my pain as being a shotgun victim. Felt like my face was shot with birdshot. Just felt like my face was hit with a claymore and yet i looked fine on the outside. Life is just crazy and things like these continues to baffle me. I respect everyone that goes through this. Youre literally fighting death because death to some of us is relief. So we fight to suffer another day and mostly its for the people we love.

This was phenomenally informative. Impressive

I had a MVD in February 2021. I woke up in ICU without pain. I had episodes of 5 to 7 days of burning and severe pain every 2 to 3 months. As time went on for a year it got more often and more severe. I could not to eat or talk without severe jabs. I lost 10 lbs every time this happen. The most important thing in your decision is which surgeon you choose. This is a rare surgery and a rare disease. I cho

Also to mention that those of you with bilateral TN, also know it’s not just MS that it’s associated with. About 40 percent of the ppl I’ve met with TN have it bilaterally. Some have compressions on each side, some have MS, a few don’t have any known underlying issues, and some of us also have Lupus & Sjogren’s, which contribute to it.

i am suffering from this last from 5 years nobody help us out from those attacks

Doctor I have a question for you, Are you going to answer any of your followers questions?

I was diagnosed in June 2022. I'm taking 600 mg of gabapentin. The worst pain I have is in my sinuses when I cough or sneeze. I haven't heard that pain in any of the video or articles I've read. Has anyone else heard of that pain during coughing or sneezing?

Hello have had tinnitus for a year then developed TN on V2. On same side as tinnitus ( right side) 6months later what's the chance of the 2 being related I am 46 with no other health issues.

I have trigeminal neuralgia now and I am dying!

Thank you 🖤

Dr. Stieg, I have had what I would call Type 2 TN on v.2 and v.3, but no MRI or MRA scan find a problem. However, the pain is pretty darned obvious to me! Now, we toss in one more factor that may be a contributing cause. Just last week I had an angiogram and it did show something quite condemning to me--an 80% blocked artery. FYI, I'm 83 and swim regularly, play the tenor sax and restore old cars, so I'm not exactly dottering old man with one foot in the grave. My doctors are now saying rest, don't bend over, and resist your normal level of activity. I am not very happy about all of this. Could my TN-pain like systems be due to a blockage in my brain?

Can you explain about occipital neuralgia??

HELLO DR. STIEG! I wish I'd seen this before now. I've been aware of you and your reputation for several years. I am very much looking for an effective treatment for my very unique situation. Most pertinent Hx: MS, Typical and Atypical TN, both are bilateral, 6 years now. All medical management has been tried and mostly ineffective. No vascular component, but the MRA did find a brain aneurysm, which has been dealt with. I was deemed to be ineligible for invasive treatment due to the MS. Many more summary details available if we can connect privately. The last question asked in your Q&A was one I was very interested in hearing the answer to. It had two possible interpretations, and I had hoped you would answer both to be sure. You chose to answer only one, which was V1 and V2. I believe the question was actually referring to Typical and Atypical TN. IF I were one who is eligible for surgical consideration, THAT is the question that matters! The video gave me information I didn't know about the relationship between MS and TN, specifically the propensity for bilateral presentation. I have only a single microlesion in the area of CN5 origin in the medulla, so my Neurologist has hesitated to say the MS brought me the TN booby prize. I say if it quacks like a duck... I did consult with the radiotactic neurosurgeon, and he was the one to say no to ANY level of invasive intervention. I was hopeful that you would specifically address tx in the MS population once you addressed the association with the Dx. That would be a discussion with a lot of if/then, and only serve to confuse people who are free of MS, so I understand why you did not. I would be thrilled to even have a single email exchange with your team about the specifics and possible interventions. I'm happy to travel to you only IF there is a reasonable possibility based on my history. This has kept me on disability, away from my RN career, more so than any of my many issues. Worse, it truly affects me all day, every single day. Thank you for your work in this area. We need you and those that will follow!

A great procedure fir trigeminal neuralgis.

I had MVD and it was the best decision. Very important that you use a neurosurgeon who has done this surgery many time. You might have to travel to get the best. But it is worth trip.

what sort of side effects can be expected from the medicines that treat this problem?

My family doctor in Israel accused me of making up this “fictional” illness, stating that “There’s no such thing.” What has made it easier to live with is a tight ski hat worn every moment I’m at home, year round. It feels like it’s holding in and pressing on my brain. I am too embarrassed to wear it outside other than in winter. No complaints: I’m lucky in that there’s no more ice pick in the brain pain.

I have had LEFT SIDE TN for 36 years. Very debilitating. I'm 64 now and comorbidities on board. No hope here.

I’ve been recommended for MVD surgery. We believe cold weather sets off a triggering episode. I live in Chicago. Question: if I have this surgery can I still live in Chicago without an episode or would I still need to move to a warm weather area? Thank you.

I have MS and my last MRI (Dec 23), showed an acoustic neroma. Beginning of Feb, the pain in my jaw was unbearable. Could the neuroma be connected to the possible TN?

I have this. I don’t have a blood vessel touching the nerve. I have mast cell activation disease. This is nothing more than good ole fashioned anaphylaxis of the CNS. I’m almost in remission. Got my my mast cell count down. I’m taking Zyrtec, Lyrica, montelukast and metformin. This is an allergic/inflammatory disorder. Nope. Not spending a red cent on surgery. Do your homework. These doctors need to READ medical literature.

Hello Dr. I have TN for almost 20 yrs and i have pain on both left and right side of my face. I'm 61 and i ise tegretol whc sometimes effective sometimes does not. What is the side effect of tegretol. Thank you

Please can you help me recently my husband had a sinus operation endoscopic sinus, bearing in mind he has Trigeminal neurology, I've got scans of before and after, we need too know if the after scan picks up something Please help

SINCE YOURE A SURGEON I WOULD IMAGINE THATS YOUR ONLY TREATMENT. DO YOUR PATIENTS A FAVOR WHO HAVE SILVER FILLINGS, HAVE THEM CHECKED FOR HEAVY METALS. ALSO CHECK FOR POSSIBILITY OF HERPETIC LESIONS ON GANGLION. AND PLEASE STOP TELLING PATIENTS THIS IS RARE, IT IS NOT

How do we know its TMD or TN

Can someone please tell me the most initial pain and or burning feels like. It's quite mild but it's not at all pleasant. It's a sudden burn across my cheek or jaw or even chin sometimes.

cluster headaches

Hello Dr. My mom just had that surgery done behind the ear, sadly it hasn’t help in any way. Now her pain has expand to the right side. So her pain is on both sides. Do you have any suggestions?

What number can we contact and what insurance do you accept