I was Diagnosed with Trigeminal Neuralgia, Now What? (Part 2)

[@v2919]

I was diagnosed with trigeminal neurolgia 5 years ago. The pain was excruciating for the first couple of years. Level 10, & would last for hours or a greater part of the day. I was on gabapentin, which gave me terrible memory problems. Over time the symptoms subsided to where I get a quick jab at times when I eat or drink. It is about level 5 pain wise. It can be several times and hour or once or twice a day. I recently discovered that if I press my tongue to the back part of my mouth the symptoms go away. 🙏 I get the episodes several times a day & at times I skip meals. I'm having another nerve block as the last one left me pain free for months.I take Oxcarbazabine as needed for pain, which I try to avoid. Be very careful, it is easy to overdose just by taking a dose too early. Blurry vision & difficulty walking can occur. Lastly, this is the last thing you feel like doing, but ice also alleviates some of the pain. Good luck to

[@tdshrinksleevelabeling953]

Very interesting. I had TN and then had mvd surgery. It worked but things like this weren't around it seemed in 2000 thru 2006 when I was in horrific fearing pain. My nephew now has tn so doing research. We live in Pittsburgh.

[@lariat9447]

Thank You Dr. Sutter for all that you do to educate and make people aware there is a procedure that can address this debilitating condition, see you on Monday.....Larry L.....

[@bjk0731]

I’ve learned so much from your videos, Dr Sutter. Thank you for all you’re doing to educate folks on this treatment option for TN.

[@DrBenSutterEugene]

I appreciate you saying that. I think most of TN sufferers are misdiagnosed. I am trying to do more to educate and let people know there are options besides MVD and GK.

[@healthlovevegan8251]

Im 22, was diagnosed with trigeminal neuralgia in 2020, the same month it started. I had gamma knife as my first treatment, as medicine wasnt very helpful even though my medicine had been increased and mixed with another called gabapentin. It was on my lower right jaw, after the procedure I was pain free for less than a month. But it came back with a huge flare out of nowhere on my left side, lower jaw still. It was so weird to me, but the right side pain came back fast too. I wanted MVD, but with my MRI no compression of my nerves were shown. I had another one, I guess a more excellent MRI, but still no compression shown so I was not a candidate for MVD. So right now just tegretol, thats been the best medicine for me. All other prescriptions I stopped taking as they were no help at all, but still very much pain just less than when taking other medications

[@healthlovevegan8251]

Also never told for the cause of my trigeminal neuralgia. No MS, tumor, or any other health condition. But I have been epileptic since 2017-2018, much head hitting when falling on the floor so that still sits with me. Also with how I had gotten my tonsils & abenoids removed as a child, idk if those sinus procedures ever contributed to TN. I have always all my life had, perfectly aligned jaws, but that last few years I have noticed that I have my lower jaw not completely under the upper jaw. Now I also have an underbite, so much so its now more noticeable that I have a lisp and when eating a sandwich I cant bite well unless I put it on the side

[@biancast-g7274]

Thank you doctor , I really appreciated your input with the TN problem Since this part 2 , I am holding my Botox appointment. This part 2 video is a perfect explanation of all the procedures to do . I am in a process to change my denture and will see how I feel after words . At thing it will make a difference with my bites problem.

[@DrBenSutterEugene]

Thank you for the feedback

[@nyx3967]

When you do a Surface EMG (sEMG). Do you/would you inform patients if they show any signs of something serious like Motor Neurone Disease?

[@DrBenSutterEugene]

I don't think that diagnosis is possible. The EMGs are there to show when a physiologic event (like relaxation) occurs.

[@nyx3967]

@@DrBenSutterEugene Thank you. I've only ever had an Intramuscular EMG, was just wondering.

[@DrBenSutterEugene]

@@nyx3967 intramuscular is tough because sometime the needles can go through multiple muscles. Surface EMGs shown here are best for superficial muscles like Masseter and temporalis

[@jamiemurray4263]

I truly wish this treatment wasn't so costly. There are so many people like myself that just can't afford this treatment. Almost 14 years of this hell and I can't afford help? Even though I have dental insurance. And medical insurance. Very disheartening to know that for so many, we are our only advocates. But yet, just can't pay 5-7 grand up front this life changing procedure. 😢

[@DrBenSutterEugene]

The cost for DTR in my office is 4800.00, Not sure where the 7 grand figure comes from. In the 10 year years I have been doing this I have raised the cost by 300. That has happened 1 time, the original cost was 4500, in 2014. In todays dollars that would be 5960. I have intentionally kept the cost of DTR as fixed as possible in comparison to other dental procedures to help as many people as possible. Which by the way, I could probably help a number of patients by building a dental appliance for 650.00. Most insurances don't cover that either which is a fraction of the DTR cost. Dental Schools are clueless as to physiology, so this is not being taught to dentists that are graduating. Not that any of this helps your personal situation, but since a false claim was made I felt compelled to clarify a few points. Hope you find an answer and get relief. I know there is nothing like this pain.

[@jamiemurray4263]

Absolutely no way to put this pain on a scale. I went to a dentist a few months ago and he did this same type of occlusion measurementsas part of my new patient exam. And I have a lot of high spots. Yet, as you said, most dentist do not know how to correct a person's bite. I worked as a Dental Assistant for almost 10 years. And I believe that the lack of proper ergonomics played a huge factor in my case. And the pain became so l excruiating I had to leave the dental field. I've watched your videos. And I respect what you're doing to help people. That's why I got into the field myself. To help people. And I miss it terribly. But there's no way I will ever be able to do this work again in this kinda jaw and tooth pain. I wish more dentist understood this. Because I have known people I met on TN sites, that chose to take their lives rather than live this way. I have been told by one Dentist in Texas that they charged I believe 6500. Which is outrageous to anyone that has TN and is already struggling in every way. The 4800 that you charge is less, but respectfully, still a lot for most people. So we're stuck living this way. I pray that one day, this is made more affordable or at least the option to finance or make payments is an option so that people can find joy in living again.❤

[@nathanisenhour4420]

Great information 👍. So. The outcome fir myself. Filing Disability?

[@nathanisenhour4420]

I researched myself. Found out that 5 HTP..helped sleeping and reducing issues. Hydoxytrptophan. .Best sleep ever..

[@nathanisenhour4420]

Had orthodontics early age.. Alot of special springs etc . Then regressed after years later..

[@karilynch4466]

Can you do the cleaning & fillings needed on my teeth before we do the DTR therepy for TN? Also, do you take insurance for dental fillings & cleanings? I’m saving up money to come see you for the DTR help of my TN. I hope to have a consultation via Zoom with you soon as well.

[@karilynch4466]

My TN pain started 10 days after getting my braces off in 1998, failed MVD 2001, I have always thought my braces were the cause but no ortho dentist nor neurologist or doctor would agree. My bite is way off. My TN is on my left, I can’t move my teeth at all on the left when I do what you say in this video. I just can’t live with this pain much longer. I got a sleep apnea appliance 4 mo. ago & when they started adjusting it my face/head pain got way worse. If we can get this pain even reduced 50% I will advocate for insurance to pay you & doctors, dentist’s & orthodontist to use this approach on all their dental work. Hell my medical insurance has put out over 1 million $$ in the past 26 years trying to fix my TN, you are spot on with the fact why wouldn’t we do this non invasive approach FIRST…. My insurance currently is paying for me to see a pain specialist & meds monthly that is over $1500. Per month. Why won’t they give this a try…. To crazy…. Thank you for letting me share here. I hope to see you via Zoom very soon, I just need to save some $$$$

[@DrBenSutterEugene]

You can have fillings and cleanings done beforehand for sure. If I do them yes I will bill dental insurance for that aspect.

[@DrBenSutterEugene]

The logic of what they pay for and don't pay for does not make any sense sometimes.

[@karilynch4466]

@@DrBenSutterEugene it’s nuts, these insurance companies are lunatics. If, no WHEN, this fixes me I promise you I will advocate for it. I lost my career as a Top Real Estate Broker in NM in 2004 because of this crap. I wish I had never had braces. I had a huge over bite, I wanted it gone, well here I am 26 yrs later in excruciating pain, but no over bite…

[@karilynch4466]

@@DrBenSutterEugene have you ever had a patient get insurance to reimburse them for this procedure…

[@tdshrinksleevelabeling953]

I never could explain why my TN went into remission for long periods.

[@JulieMoberly-j5z]

Are there updates to the certified providers list? I encountered the name of a dentist in Springfield, Mo, who uses DTR as a treatment for TMD, but TN was not specified.

[@DrBenSutterEugene]

The list is updated, and the newest DTR provider that is not up will be in the UK. Currently I have no one on the list certified in MO

[@wizofclutch7307]

Hey doc, I’m really considering this dtr therapy. I’m from NZ and have recently had 6 fillings done, Ive gone through the typical process of struggle with tmj like symptoms, my bite now feels terrible. The closest certified dtr therapist is in Sydney, Australia I also have family over there so it would be the best option for me. Should I be confident in choosing that provider, or coming to you with my concerns?

[@DrBenSutterEugene]

I cannot answer the question "who should I see?" That is such a personal question and many things go into it. How much does travel cost? How many DTRs have been done by comparing doctors? What is the expertise level? The answers to those questions will shape your decision. I responded to your email.

[@liselotteo2006]

Hi Doc. I live in Fort Worth TX! Where can I get dtr therapy? I went into remission for two years after suffering terribly for 3 years and just a month ago it came back. Help please. I’m a mom of 3 young children and every time I get a flare up I loose several pounds due to the inability to eat ( even drink ) 😢

[@DrBenSutterEugene]

Tyler TX might be the closest. www.digitalocclusionseminars.com/dtr-providers.html

[@SarahLabbett]

Hi does it last forever, or you need dtr again. I want this for my tmj, found a guy you trained in london. However im seeing another dentist who used invaslign to correct tmj, he is having good success.

[@DrBenSutterEugene]

Usually symptoms get better during ortho (not always) as the bite is changing and the bite isn't really repeatable during ortho treatment. 3-6 months post ortho, time will tell. I think it is always smart to have a baseline T-scan data when ortho is complete, then follow every 6 months. My guess is your teeth will be straight, but you bite will be less than ideal even after Ortho "settling" has occurred. Please keep me posted

[@SarahLabbett]

@DrBenSutterEugene can't i just do dtr first ?

[@DrBenSutterEugene]

@@SarahLabbett if you do DTR first, then you change how the teeth come together (via ortho) you will change how the teeth strike which could effect the DTR Results. Usually Ortho lengthens DT not shorten them, which means you would need DTR therapy again. (ask me how I know!)

[@fidharwa]

would DTR work for someone like me who has been diagnosed with Atypical TN? Constant aching and burning in front teeth and sharp pain in random teeth

[@DrBenSutterEugene]

I have treated many patients with atypical TN. the success rate 92-94% does not change with "types" of TN.

[@hichembenslim1063]

​كيف كانت طريقة العلاج يا دكتور من فضلك ؟

[@healthlovevegan8251]

It sucks being 22, sometimes living like im 72 or something....oh goodness

[@susanjennings4113]

Anyone you know in Australia offering this treatment?

[@DrBenSutterEugene]

www.digitalocclusionseminars.com/dtr-providers.html

[@nathanisenhour4420]

This situation affects my left ear Canal. Hits the neurological of both sides.. Or the branches of the facial areas. It flairs intermittently. Went too maxifacial dental surgeon. Etc. Mine isn't bite. Sir. . Neurological issues occurred after a vax..Allergic reaction off scale. . Absolutely no medication. .It worsens issues. No imput from CNS..

[@DrBenSutterEugene]

indeed, many things can cause pain and symptoms. The bite is #1 etiology for these symptoms presentation.

[@nathanisenhour4420]

I've been too ENT..Their awareness is noted.. But, nothing recommended? Mouth piece only recommended. Really?.

[@nathanisenhour4420]

Need total view.. Causes sleep apnea. Etc. Yes.12 cranial nerves. It ignites the entire system..

[@susanf7461]

Remove coffee cup on your shelf!!

[@DrBenSutterEugene]

Oh my Goodness! That was a gift, I forgot that was there. Thank you, I will do that moving forward!

[@DrBenSutterEugene]

I am going to have to go back through my background items.