Trigeminal Neuralgia Facial Pain Slide Show TN TNA Tic

[ghettoPrincess82]

I've been diagnosed with Episodic Trigeminal Autonomic Cephalalgia. I feel terribly hopeless since it took 12 yrs to to put a name to it. Over the last yr the pain has been unbearable and i've tried a number of medications which haven't helped in the least bit. I am a 29 yr old single mother who used to be very athletic and sociable. Now I don't want to go anywhere or do anything with anyone due to how depressed I am. I feel that nobody can understand. I am at my wits end!!

Alicia- wpg CDA

[jjcrazi]

praying doesn't help............up until that bit of useless info i thought this vid was good and helpful

[boywithadolphin]

This problem started when I was 60 and lasted about 2 years. Now at 66 in remision without medication. Just thankfull I now don't have but know that in can return. Had great help from my GP.

[DJsmoothmoves]

this sounds like me. I have had the pain for 5 years now. every test imaginable

the meds i am on is not working

and yes now the depression is coming

the pain effects my right eye more and more

and yes,..i feel like I am crazy

I just started to research this myself and thank you for saying what you have said

I am so glad to have hear similar stories

I just cannot believe there is nothing they can do to help me!!!

[k18381]

i have neuralgia on both sides of my face.it is so painful,if i had a pliers this is where i would play dentist,so painful,what can i do to stop this pain?

[leslovesmusic]

@k18381 Hi so sorry you are suffering so much. Our daughter had TN

with terrible pain, we had to take her out of school. I found a non invasive

laser therapy treatment in South Carolina, Laser Med Center. She now has

no more pain and is back in school. Please just try to call them and talk to them,

they can really help you. Good luck.

[flymasterA]

PLEASE, if you suffer TN, get in touch with this #1 TN surgeon:

Dr. Tom Kopitnik, Mountain View Hospital & Neurosurgery

Casper WY 307-266-4000 VERY reasonable with rates and payments.

I'm 59 and my surgery recovery was unbelievably fast- out on 2nd day after surgery and back to life totally TN pain-free after 3 years of suffering!

Contact me. Not affiliated- just a very elated patient!!

[flymasterA]

From a TN sufferer for 3 years, now happily cured by MVD surgery.

PLEASE, if you suffer TN, get in touch with this #1 TN surgeon:

Dr. Tom Kopitnik, Mountain View Hospital & Neurosurgery

Casper WY 307-266-4000 VERY reasonable with rates and payments.

I'm 59 and my recovery was unbelievably fast- out on 2nd day and back to life

totally TN pain-free. Contact me.

[RodentBill]

Hi Brian, found you vid via a link from "Facebook" where there is a TGN support group. I have been put on a low dose, 10mg, of Amitriptyline which has taken the pain away, though I can still feel something in the "distance" but not painful if that makes sense! I'm now 50 but the attacks started about 2-3 years ago. It was my dentist who reconised the problem after I thought I had a bad cavity. Thanks for putting the vid up! Tony. UK

[flymasterA]

@RodentBill Please see my last post

[Ladyfarmer1]

I've had this terrible pain for 2 years, and have been told there's nothing wrong with me (I've had X-rays and an MRI). Acupuncture made it worse and I was beginning to lose hope. However, I'm using a Tens machine (at the base of my neck up to my lower jaw) and that's the only thing that seems to help. However, I'm going to go back to my doctor after seeing this video - be nice to get to the bottom of what's actually wrong with me.

[leslovesmusic]

@Ladyfarmer1 Our daughter went to many dentists and had x-rays and

spent 10 hours in ER until she was diagn. with Trigeminal Neuralgia. I

then searched the Internet for days until I found Laser Med Center in SC.

Please call them and just talk to them they will give you great information.

[44bugaboo]

oopsie I meant brain lesions not brain legions. But, yes I thought it was stress working under a very demanding boss. I quit that job, then had a few upper teeth on my right side removed. The pain was excrutiating I remember some nights I was thrashing about hoping to subside the pain.

[44bugaboo]

I've had this pain for a few years. Went to Doctor he thought it was migraines. Even though I never had the auras that migraine sufferers had. Went on migraine meds it somewhat helped. then had a few upper teeth on my right side removed. Had not had problems after that. I've heard TN can be associated with MS ( Multiple Sclerosis) Very strange to hear now since I had an auto accident and Neurologist says I have brain legions that suggest MS..GET checked out for MS

[kimkow]

Thank you for the video..I have been dealing with this for 9 months now. I have had 2 root canals on the same tooth, 2 apicoect procedures and then had it pulled. I have been on 10 antibiotics..nothing has helped. I am on siezure medicines and it is not helping either. I am only 37, mom to 3 beautiful kids...I am very tired of hurting and feeling this way.I am scared, I want the pain to stop and surgery scares me but I am willing if it will stop this. It is nice to know I am not alone.

[Kevisaurus1]

My doctor is only throwing drugs at mine which is pronounced in the upper left side of the face which is most felt in the teeth region there. I saw 2 dentists and 2 endodontists yet had no dental problems and then saw an oral surgeon who said that I had this problem. I have seen lots of doctors and taken a bunch of pills and they all are a joke. I am on the county health insurance but they don't want to go the surgery route. I hate taking drugs and just want the pain to go away for good!

[ericamanda01]

Brian thank you so much for this video. I know that so many people think this is just a small issue. I wouldn't want anyone to know the pain I experience, but I want them to understand.

[Melindaca2]

Well well.. Nice show.. I have been dealing with this stuff for so long.. SO VERY LONG.. to a point where the pain actually took away the movement of my eyes. Awesome vid.. Pain in my jaw, neck Behind my eyes.. burning in my ear... the pain is telling us something inside us is dying... I have not been formally diagnosed with this.. no doubt I have it!

[ericamanda01]

I finally go my diagnoses when my regular DR. wasn't able to see me. By pure luck the attending asked me what the pain was like and he nailed it. That was in Oct 06. It took 20 years for someone so see it. But I was so relieved to know, it gave me validation, and I now know I wasn't crazy.

[flymasterA]

@Melindaca2 Please check out the diagrams of the trigeminal nerve on the internet. The pain for TN is usually concentrated in the chin, cheek, jaw, teeth, tongue, and throat on just one side. You may have more than one problem. But the TN pain is very piercing and stabbing. The episodes can be short, spasms, or prolonged. When I have a long spasm, the pain pounds in time with my heart-bat, so I am confident of the TN diagnosis and treatment- decompression.

[TheLaLa115]

<3 Thank you for posting this video there needs to be a lot more information about TN.

Im contemplating my attacks as I have all 3 nerve lines short circuited lol. Even though it would be embarassing I think the rest of the world needs to see it at its worst to understand.

[BridgetJonasBrosFan]

God bless you Dr

[mixerdriver531]

sory for all the posts i have a question, i live in hemet, california not sure if i should go directly to a neurologist or to a primary care dr. i am not even diagnosed yet, i was told that it was a possibility when i went to urgent care.. and was perscribed neurontin....dont have any more ..

[chm97chm97]

Did the neurontin work? I have TN and the neurontin helped me tremendously. You said it feels like a tooth ache, do you ever get the feeling it is an electric charge ? The molar being pulled probably had NOTHING to do with TN. TN is because there is something pressing that nerve in the brain. Have you had a MRI?

I know the pain you are in, hang in there. There is hope!

[mixerdriver531]

female 27yrs. to describe the pain it is a sudden pain on the right side of my face feels like a major tooth ache and massive sinus pain also the upper right set of my teeth and gums seem numb, but very painful! i was asleep the first time it happened. the 2nd time it happened (about 3 months later) i was at work ..now that i have been doing some research i realize that about 7 years ago i had a molar pulled and had the same pain after? why 7 - 8 years later? Amanda

[DJsmoothmoves]

@mixerdriver531

hi

I had a root canal done 5/6 years ago this is when it started

about a week after. you describe my pain so well.

have you found anything to help you

[leslovesmusic]

@DJsmoothmoves Hi my daughter had TN and is now pain free. She is doing really well. Please see her video Lee Carmen Trigeminal Neuralgia. She

had laser therapy treatment in South Carolina. Good luck, I hope you get well

real soon.

[mixerdriver531]

Hello i am 26 and believe i have this i have only had it 2 times, it lasted about 3 hours very intense.......and then all of a sudden it was all gone??. i am so scared it will happen again.... i got a ct scan to rule out stroke or anurisim... nothing so i told the dr. it felt like severe nerve pain since i know what nerve pain feels like (neck and back) thats when he mentioned tn and to get further medical attention , i guess i will wait until next flare up? i feel so stupid..

[mixerdriver531]

lio

[ninjanohandlebars]

I had my head crushed by a 1600 pound steel casting. I had a hard hat on and it saved my life (most times I wished that it did'nt). I've had TN foe over 6 years now. I've tried to take my life(pills, cutting arteries, and poisoning) 8 times, I understand the depression you go through. My heart goes out to all of you, this disease is hard to cope with. I've found relief recently by having a C2 Trigeminal ganglion Radio Frequency Ablasion. I do it every 3 months.

[ian5576]

I went to an oral surgeon who started by removing my wisdom teeth and oe next to them, then he said it was TMJ, years later I finally got the TN diagnosis. I wonder if they made a mistake about your TMJ too?

[maddapolite]

Can anyone please help me! I'm from Switzerland and my mom is suffering from TN for the past 3/4 years. I can't see her like this any more. She is very depressed and she keeps crying. She always says she won't make it to next year. Does anyone know a doctor or a hospital close to Switzerland that can help? Here (lugano) seems like nobody can do anything for this kind of problem!!!

PLEASE!

[Lesliegilda]

I am getting ready to have this surgery. I am afraid.

[MC0JUSTICE]

I've read in many places trigeminal neuralgia is famous (or infamous) for being the worst possible pain a person can go through. For a class I am taking, we are studying pain and what that means for different people. This specific disorder intrigues me. I've heard people liken it to electric shocks. Is there anything more relatable (or accurate) that I can gauge it from?Any help would be greatly appreciated. Thank you

-Justice

[nasrin42]

i hade babies i know giving birth pain is nothing comparing TN pain,i also got ms 4 almost 10 years.i mean i have had any kind of pain,but this pain is just beyond human beeing imajination nad capability,only thing i want now just to kill myseld,,,,,,please excuse me about my spelling i am not english

[ninjanohandlebars]

I have 2 types of pain, theres a constant pain feels like drinking a really cold, never ending drink way to fast. Some call it brainfreeze. I also have flare ups; It feels like someone takes a nail, hammers it into my face, then hooks it up to a car battery. After that the nail gets pulled out it feels like someone fills the puncture wound with hydrogenperoxide.

[Purrrsuasive1]

Anyone have an amazing doc that specialized in TN around the Chicago, Illinois area?

[BrianNelson123]

IF you list your phone no. maybe someone will call you. Brian Houston, TX.

[chm97chm97]

Dr George Bovis - Luther General, Park Ridge, IL. 847.698.1088. Terrific doctor. Smart - common sense. His office staff is not the best, but HE IS. I have TN as a result of an eperdermoid cyst sitting on the nerve. First consult we sat down for 45 minutes and went over options. He is good!

Good luck!

[Purrrsuasive1]

WOW, that is a great referral, only a few mins from my home. Thank you so much, I will look into this doctor. If you want to private message me your name, I can tell him u referred me. Thanks again!

[LynnFromCT2009]

i have had this for 13 years. the medication tegretol almost killed me because i am allergic to it. and the surgery - i was told it's elective surgery, therefore not covered by my state medicaid insurance.

It doesn't last jsut seconds or minutes, it lasts hours sometimes days. the swelling is incredible. pain meds don't work.

I wonder why I have lasted this long, I sometimes wonder how those people do it, you know ending your life. I wish the pain would go away.

[BrianNelson123]

I understand the alergic reaction to Tegretol. I got a full body rash from it. I hated to get off it because it was the best thing to reduing my pain. Yes it can last for a long time. Be sure to join a support group for TN Patients in your area. It can help. They understand what your are going through. Brian Nelson Houston, TX

[suphoebetchhead]

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[flymasterA]

@LynnFromCT2009 Whatever you have to do, try to get the decompression surgery. Most surgeons and hopsitals will have programs for repayment. It's worth anything to be out of TN pain. 13 years. I've had it for two and i can't imagine 13.

[k18381]

hi lynn my name is kaye,i saw the post you placed on internet pertaining to neuralgia,and let me tell you i can second that statement you made.but don't do it ,i understand what you're going trough,i my self have trigeminal neuralgia,ang girl let me tell you the pain is so intense,i can't sleep eat,just mourn and groan,i am trying this over the counter drug suggested by a pharmacist . (co-codamol)hope this helps,blessed love( sista kaye zebulun)

[elaine1443]

I had Microvascular Decompression Surgery for my Trigeminal Neuralgia.. It worked for 8 years. A year ago it came back. I had Gamma Knife Surgery two months ago, but it hasn't worked yet... Today I am in so much pain! And, everyone is tired of hearing my complaining -- including me! I am almost at the end of "holding on" ...

[BrianNelson123]

Sorry to hear a bout your pain. I know exactly how you feel. YOu have to keep holding on. Call me or email me with your phone no and I can call you. Brian Nelson 713-467-3025

[BrianNelson123]

I posted a note below with my phone no. Not sure if that is allowed. They may take it off. Write it down and send me your no. I have an unlimited long distance line. Brian

[BrianNelson123]

I have heard this many times. You get a successful MVD and eventually the tumor come3s back. Be sure to get involved in a support group. They understand your pain and can give you ideas on new things to do to cut your pain. Call me if you want to talk about it. Brian Nelson 713-467-3025.

[DonObeWan3]

@BrianNelson123  What does TN/MVD have to do with tumors?

[flymasterA]

@elaine1443 Elaine, is it possible the teflon pads moved? If you got 8 years relief, I would go for the surgery again, whatever the cost. Life is not much worth living with TN pain, as you know. The hospitals and surgeons will work with you on payments. Even if you go bankrupt, you can start over, which you can't do with TN.

Don't give up- have the MDS again.

[leslovesmusic]

@elaine1443 Our daughter Lee had great success with the Laser Med Center in

SC, You can see her video Lee Carmen Trigeminal Neuralgia. I feel for you and

hope you can find a solution.

[phoenixe40]

Male, 45. Denton Manchester, U.k. I have this, its not good. It was years before I was diagnosed. Most of the medication I have tried have had hellish side effects. Suicide Disease is DEFINATLY the alternative name. Seeing another doctor re: operating, next Tuesday at Steeping Hill Hosp. I found out about TN on You Tude by accident, I'm glad I did. It's hell, TN, for my family as well, lets hope THIS year we get some where. PETE.

[BrianNelson123]

I have such sympathy and empathy for the TV sufferes. It is a bad disorder. Continue to find others in your area with it am get ideas and referrals to the best medical help you can. Read the book Striking Back. " Brian

[Hezett]

I dont have this, but i DO believe i can relate..... I have charcot-marie-tooth disease. I get random stabbing pains all over my WHOLE BODY all the time. I went through my doctor thinking i was making it all up / crazy / looking for drugs/attention..... when she finally sent me to a neurologist I got diagnosed with this within 5 minutes of my visit. I tried neurontin, and lyrica. now i'm on Cesamet, or Synthetic THC. it's expensive but it works and doesn't make me all zombie like..

[BrianNelson123]

I sure hope your pain is decreased. TN is a terrible disease. It is comforting to know that others have it also. Brian Nelson

[Purrrsuasive1]

Have u ever tried Gabapentin for your TN? My neuro keeps increasing my dosage, but I don't like this meds side effects. He swears by this med. Wonder if I keep increasing it, or switch docs. What do u think?

[BrianNelson123]

YES I HAVE. The Gabapentin brand name IS Neurontin. I used it up to 3000/ day. I wanted to get off it. The Dr.&r manufacturer wouldn't tell lme how to taper. I did it gradually on my own. Very common for TN. It works for a lot of people. I created a website about the $400,000,000 fine that the manufacturer , PFizer, paid because they had salesmen telling Drs it would fix all kinds of things that the FDA had not apporved of. Billions Made from it Brian Nelson Houston, TX

[phwaleed]

Thanks Brian for this information

[BrianNelson123]

You're welcome.

[clampsno1fan]

TN is really terrible.. I missed 2 years of school and my poor mum never got any sleep because I was sobbing all night long. Although, I feel that the experience has somewhat matured me and definitely made me stronger, despite the temporary severe depression it caused. What annoyed me the most was that the doctors kept mentioning TN, but never diagnosed me with it until I saw around 10-15 doctors. Apparently I was the youngest case any of these doctors has seen, which made me feel alone...

[BrianNelson123]

cHECK OUT THE TNA WEBSITE ON THE AREA FOR YOUNG PEOPLE. BRIAN 713-467-3025

[clampsno1fan]

I was diagnosed with TN at the age of 13, although not many doctors seemed to believe it and I was referred so many times. It took them until I was 15-years-old to give me microvascular decompression surgery, and I'm now 16-years-old and recovering quickly. I really want to find people closer to my age who have also been affected, but the youngest I've found is 21... I was wondering if anyone knows someone I can talk to.

[mmmallory33]

I'm 23 and have had TN for 2 1/2 years.

[sch50630]

I am 24, and I have had TMJ and TN for over two years now. I know it's very frustrating for people to believe that a condition you have as a younger person "belongs" to an older person. It took me this long to have a steady, reliable treatment for TMJ. Now, I'm working on the TN.

[mymomhastn]

Thanks Brian, for at least letting me know. So far I have not found anyone that has and mom was just curious if it had to do with the trigeminal neuralgia. It may have something to do with something else....thanks again, Melissa D/mymomhastn

[BrianNelson123]

TN is so painful and not well understood by many. I will pray today that your mother will have reduced pain or that she can find a medicine that will work for her. Everyone is different. Pain Pal Brian Nelson Houston, TX

IamFightingCancer dot c.

[mymomhastn]

Hello, I have a question for you all. My mother has tn and she wanted to know if any of you experierenced any metal taste in your mouth. She just recently had the MVD surgery so she is only 10 days out so we dont know how exactly how things are going but she says she does feel better but her right side of the face is numb as if she has had novacaine. Thanks to you all for the videos. Its great to have other people experience talk about it so she is not alone.

[BrianNelson123]

I never had a metal taste but I have not had a MVD either. I had radiation treatment for a tumor in my jaw the parotic gland. Brian Nelson 713-467-3025 Hopefully others will comment.

[lefttwtoright]

I'm not alone,thank you.Iam a nurse and most of my co-workers don't understand TN.I have a great dr.I have TMJ also,same side.Pain Today has been so bad.Sometimes just want to give up.Will keep watching for postings.

[sch50630]

You're the only other person I have heard from that has BOTH TMJ and TN. I have both as well. It is crippling and depressing. The thing I hate the most is not being able to make others understand, especially some members of my family. It breaks my heart and causes me to lose hope sometimes.

[worldhealth]

I found my nucca chiro on nuccadotcom and learned a lot about upper cervical chiropractic techniques and locations of upper cervical chiropractors on web upcspinedotcom.I'm feeling blessed to live a life with no pain and I'd wish the same to all tn patients.Thank you for reading my comments.

[BrianNelson123]

Hi Worldhealth,

You can learn a lot on the net. It is an awesome tool for the medical field if we learn to use it. I was involved to help with one major cancer and one trigeminal neuralgia case because they learned from the net how to contact others with similar problems. The HIPAA LAWS help us in one way and hurt us in another. You user name worldhealth indicates you must be very dedicated in one way or another. Brian IAmFightingCancer dot c. 713-467-3025

[worldhealth]

I had tn for 23. 2 years ago I went to seek out help from a biophysics chiropractor,who helped me with my pain a little,but more than tn drugs.I was seeing a biophysics chiro for 15 months,my neck looked ok on x rays,but i was still in pain,although just in one little location in my mouth.He advised me to go to see upper cervical chiro, who in just 3 wks and 3 adjustment killed my pain.He made x rays of my neck and atlas,my atlas was tilted and rotated by 5 degrees.

[BrianNelson123]

Thanks for your comments on Chiropractors. I have heard other comments favorable but the general MD field still does not give them a lot of credit.I guess time will take care of that. Brian Nelson NelsonIdeas dot C 713-467-3025.

[julianaperdomob]

Thanks Brian!!! I am 25 and new with trigeminal neuralgia, a month ago I had an accident and I've been feeling this terrible pain exactly as you describe it! I'm just glad to see I'm not alone!

[BrianNelson123]

Yes,A trauma accident damaging the Trigeminal nerve in your head could give you TN. I had a cancer tumor in my jaw/Parotid Gland& the Trigeminal nerve. After my 1st chemo & radiations the pain stopped.The tumor had shrunk not pushing on the Trigeminal Nerve. I had a 3 chemos&33 radiations which killed the tumor but it mestasized to other parts of my body as cancer in my lungs and heart sack, the percardium.Just standing by wating for it to show again. Feeling Great. Brian Nelson713-467-3025.

[dishman46]

Thanks Brian, I am 53 and live in the caribbean Island of St. Maarten. Yes, even down here we have it. I have suffered with it now for 5 years, and I am checking all my options.

[BrianNelson123]

Thanks for your comment. I hope you have looked at the web site mytrigeminalneuralgia dotC. I have never been to your island. Try to find a support groupin your area or create one. Brian 713-467-3025

[SBJoynt]

Hi Brian, My wife is 22 and was diagnosed with TN 3 years ago. She has been taking 1200mg's of Neurontin per day for a long time now, but recently we found a neurologist who wants to help her and she is going in today to do a "pain block" injection. Would you know how affective this procedure is or could you please point me in the direction of how I may find out if it is the best procedure? Thanks so much, Shaun Joynt

[BrianNelson123]

Shaun Call Shelly Wilson with the Trigeminal Neuralgia Assoc. TNA 817-416-7202

What are the characteristics of the pain, where she lives, other medications tried, if brand name Neurontin or generic Gabapentin, etc. Have You read the great book "Striking Back"?  You can order it from TNA or through Shelly.Shelly can also put you in contact with a support group. Eat healthy.I have a website on it in NelsonIdeasdot c Brian 713-467-3025

[SBJoynt]

She's tried Tegratol but has had an allergic reaction to it and the 4 neurologists that we've seen have all put her on Neurontin 300mg. The pain is similar to "electric fire" which she calls it. Had it under control but progressively worse and now pain attacks are a days apart. Will check ur website

[oliviasmommy27]

I have suffered from this horrible "suicide disease for 8 years and I am only 22.

[dolefruitcup]

i suffered for 3 years and i turn 16 today ._.

[hinkyponky]

Thank you for posting this. I am another person who has suffered with this condition for a long time.

[Suezala]

Brian, Thank you so much for doing this video. I have suffered with TN for long time but they just finally put a name on it. I have MS and I thought that was bad but this pain is the worst. Thank you for sharing. God Bless!! Susan B.