Trigeminal Neuralgia: Important Things To Know If You Have Facial Pain-UF Neurosurgery
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- Опубликовано: 3 авг 2024
- This program highlights important things to know for people who suffer with facial pain. William Friedman, MD, carefully explains the symptoms, diagnosis, and treatment options for individuals who have Trigeminal Neuralgia. Interviews with patients reveal their maddening ordeal through the escalating pain that controlled their lives and the repeated misdiagnoses that had some questioning their sanity. This program was funded by the University of Florida Department of Neurosurgery, written and directed by Paul Lohbauer, and produced by ProMediaDigitalVideo.com.
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I pray God heals everyone going through this pain right now in Jesus mighty name. Amen!
My mom suffered from this for 25 years, last year she had a treatment of radiation/laser at Stony Brook Hospital and next day she was pain free and still today. No more pills either
Glad that she is pain free. Did she get any side effects from the treatment like facial numbness or muscle weakness?
What was the treatment called? My husband is suffering and is in so much pain :(
@@zainabmasood7556 did your husband tried lyrica? It works really well for nerve pain with almost no side effects
Really? That's so wonderful. I am so happy she is no longer in pain. Also, I know with my family, it's not easy for them either. And people can't understand what I go through. I really wouldn't want them to . It's horrific
Exactly what does the procedure do?
It is a comfort to know that the horrible, horrible pain We have suffered through is made real by knowing others understand what a monster TN is. We aren’t crazy. We aren’t hypochondriacs. It really hard to live when every day you know the monster is coming and you beg God to take you. Bless us all. Mercy on all of us. I love and care for all of you like no other.
I just started meds..diagnosed quickly..my Ms Neuro knew exactly what it was...titrating up now..starting to feel some relief...Thank God for doctors like you...this is drop me to my knees painful ...a gift from my MS...im glad there is help👍
This is horrible misdiagnosed misinformed mishandled for years. Miss ..We don't know what to do we'll just call it CRAZY. Thank-you for clarifying and validating this.
great informational video
I'd rather be in labour pain than this ,it's so painful seriously real .
At least you get a break between the pain of contractions unlike trigeminal neuralgia.
very informative lucid video..thank u so much doc
Thank you for posting this very informational and important video! Many will be helped by it.
Mine is a very rare case as it centers in the left side of my brain. Swallowing can trigger the attack's. Every time It hits me it's a major attack, with each one coming faster then the last, and lasting longer. I just got my script of Tegretol filled today . My pain is 10+ I see a specialist as soon as they are open after the weekend is over, so they can be open to answer the phones. I'm so ready for the pain to be over. I don't care if i have numbness. Anything to stop this pain, Feels like getting a red hot steal railroad spike hammered into your head, and it happens with out notice. All I can do is scream out in pain.Poor husband can't get a good nights sleep with me screaming. I get so worn down after a few hours of attacks. Makes me so weak I can't hold my head up, or sit upright. Thanks for reading my woe's. I have to go lay down now. God Bless.
Hello & how u feeling today?
My husband is experiencing excruciating pain from trigeminal Neuralgia and unable to get an appointment with a neurosurgeon for the procedure at USF stating that there's a month wait at least. Don't know how long he could tolerate this.
Need immediate surgery. Had MRI a week ago.
I had this for days.. it hurts so much. Only Jesus was comfort. I cry to Him and he comforted me. Today I Believe he has touched me and the pain will never come back again. I pray same healing power of Jesus in your pain right now! I now know it’s not easy at all to go through this pain. Father, please show your mercy and heal this person in your name Jesus. Let the pain never come back in your name. Amen! Receive it friends, pain killers don’t heal, Jesus does.
Praise God
Amen
Amen
@@Fear-the-LORD. I’m so sorry to hear that! Jesus please heal your child. Complete recovery in the name of Jesus! You are our healer, we have our hopes just in you Lord of Host!! Please touch your child right now and heal him completely our loving father.
Yess! Please.pray for me! Too painful! Amen 🙏
OMG I had this!! I was misdiagnosed over and over and then an ER doctor ( bless him) finally said what I had and what to do. It is very scary.
Awesome video
TN is called “the Suicide Disease” for a real reason. The pain wants you to end your life. It’s unbearable. I’m just starting on meds. I’m praying it works.
Hello fellow Irish ☘️ I have the same last name.
It’s been about 10 months since the last episode. FYI my Neurologist asked me if this began shortly after my first COVID-19 shot. It did. I’m off Oxycarbazepine. My MRI showed the artery touching the Trigeminal Nerve. I wanted to shoot my face off, the pan was unbearable. So far, so good for now. A friend has this and she sees a Dr. at John Hopkins Hospital in Baltimore, MD. He kept her pain free for 1 years before it hit her again.
@@lanawelch2428 I think in every mri artery is touching the nerve but why this happens to some and not to some and while Mvd many surgeons don't find any artery compressing trigeminal nerve but in mri they got it so this is not the real reason I think .It is something different as touching do nothing ,pressing for long time wear off mylein sheat and then I can say symptoms occurs.
@@lanawelch2428how are you doing now? It’s always good to know how things are going after a long period of time.
@@canoegirl6335 no episodes for a few years, but 4 days ago I began having a nasty throbbing pain along the side of my head just above ear level. I began taking oxycarbazepine 3 times am and 3 times at bedtime. It’s helping already. Thank you for asking.
Need a follow up on these people to see the today!
Im in pain now but on the meds at this time .I have nearly had all my teeth out thinking what can this pain be .I knew the pain was worse then i have ever had .Still is .Had this on going .Most of the time my pain lastis for over a year .I just can not stand it .Taken over my life .Can not do any thing at all.
Very knowledgable doctor!
Go Gators!
Dasuni Hillsborough
He says UF offers 3 procedures. What he fails to mention that if he doesn't see a vascular body offending the nerve, he will cut your trigeminal nerve, without ever discussing it with you. He did this to me. He did a partial sensory rhizotomy. Instead of waking to pain relief as expected from MVD, I awoke to horrible pain in my face that affected all 3 branches of the nerve. I was then put in a hallucinatory state with ketamine to stop me from screaming. Almost 3 years later I suffer worse pain all of the time and I started having grand mal seizures 5 months after he operated on my brain. At the follow up appointment, when my husband and I asked him why he cut my nerve without asking me, he said he apologizes for not communicating. He also said he does this on 1 out of 5 MVD surgeries. He said now that you have had rhizotomy, there is nothing more that can be done for you, all that is left is pain management for the rest of your life. He also wrote in MVD or Partial Sensory Rhizotomy on my signed informed consent and wrote in surgical notes it was "predetermined". This neurosurgeon feels he has the right to do anything in your brain that he wants and will disregard your wishes, nor does he care what they are. Partial Sensory Rhizotomy has been called a "Hail Mary Pass". Dr. Janetta warns against it. I suffer the consequences of this surgeons actions everyday and he refuses to be accountable, Other people have contacted me with their story about how this neurosurgeon operated to do one thing and then switched to something else or dis much more while they are a sleep on the table. Be warned 239-440-5201 Carla Morgan
Carla Morgan z
I am so scared to have surgery! My husband is pushing for it. This is why I am scared. Thank you for posting!
thats how you get fucking murdered just saying... you cut something in my fucking brain you werent supposed to...im posted up outside your fucking kids school. to do a good ol fashion Kidnapping and murder
Blunt Reviews your silly threats are like Carla Morgan's, unhelpful in the extreme. Check what you are writing here. You are saying that you will go to the school that the surgeon's child is attending, kidnap the surgeon's child, and then murder the child. You Sir have problems. You want to hope that some one that works for the FBI or some other law enforcement department do not read what you have written. You are not anominous on here and there are ways to track the users.
So sorry to hear this. . You pray it will work then get so depressed when it doesn't . And when it makes things worse you don't know what to do besides to go crazy. Many of my procedures made things worse, Before i could handle the pain, now i don't know how i'm alive, Seriously Thank you for posting this, Iam in Florida & thank God i read the posts below & found yours, You saved me. Thank you. I was about to jump at the chance & so happy he was in Florida. Then i read your post. I am again so sorry to hear what happen to you. then you have to pay for it, you pay for it with pain, your life and your shah.. Not right. Hope your feeling better now or if you found anything to help. It's Your words here were not in vain. No way will i even think of going now. Thank you.
I had TN for 17yrs. in all 3 nerves, like having a baby through your nostril every 10 seconds. A ton of clueless docs & 2 Gamma Knife surgeries later - I'm good now! No meds helped... feet in hot water seemed to help temporarily, same with Chiropractic.
Crying made it worse.
Don't give up hope - believe you will beat this!!!
@shannokona hi sir, my mother was suffering from TN type 1 since last 15 yrs, ,now also she having pain frequently more than before. Let me know what u made to get out from this pain. Did u do surgery or u still on medication
I NEED HELP TODAY!!!
@@allrizecourtuncensored5220
My heart goes out to you! Meds may help... but they didn't help me. I wasted a lot of time & years of suffering. Try the meds... if they don't help, find a competent, experienced neurosurgeon to do the Gamma Knife surgery. If Docs or insurance try to blow you off - stand firm & fight back.
I wouldn't be here - if it weren't for the Gamma Knife.
Hang in there, baby... don't give up!
@shannokona, thx hon. I also have cluster headaches n frankly, I don't know which one is worse 😫
@@shannonkona is vessel pressing trigeminal nerve is your case??
I'm posting for the first time ever. I'm very concern of a love one im in one state and shes in another she has had the at least 3 surgery the one behind the ear and placed a the pad it didn't work only temporary. Now Tuesday she is getting an in her face. I pray because she's suffering for over 6 years I've heard no cure shes at this point, shes even travel to other states. I'm flying soon to be with her
Am in pain right now. And am on gabapentin 1200 mg 3 time daily.along with tegretol..i need help thanks for the info..the insurance is a whole new story
I’m 6 month with sever pain at about a 12 . In Canada the wait just to get a MRI is up to12 months. Feeling desperate and broken.
i found not cleaning teeth in that area during attack helps. That was before i knew what it was. Just realised today. I was also offered root canal. i didnt have it. Second opinion said maybe its gum infection. on Amoxicillin just incase. And i also have been told in the past by dentists that nothing wrong and that i worry too much. Good video. I got it now! had early warning sign few weeks back . when i touched top of my mouth i hit a nerve or something. just slightest touch felt like a needle. then 2 minutes later it was gone.
I have had that for years
Its brings you to your knees.
I still have that but lately last 5 months its has been
Silent. My Dr gave me oxcarbazepine the other day as it waa going to start again.I have my pray that it will completely stop.
Thank you for the video
I'm going through this now I was misdiagnosed by dental also and by the Er until my regular doctor just gave me real diagnosis 2 days ago it's so painful please keep me in ur prayers as I wait for treatment
Pray and pray that is what I did and God answered my prayers, my cure was a soft mouth guard which I wore every night before going to bed and the pain left me. It’s 8 months now and I pray that it won’t come back. Sometimes clenching your teeth at night can cause the pain
@@Lizzi31 ok a mouth guard I will find this
@@babygirltalkshow6171 speak to your dentist and find out whether you are clenching your teeth or grinding your teeth at night. A good dentist will be able to tell that, if she says “yes” get a soft mouth guard, the dentist will get an imprint of your upper teeth and prepare one for you, ask her to make a soft one, a hard one might hurt. Let me know what happens. I know the pain can be excruciating. Be strong
It happened on me too after dentist filled out the cavity, I really I don’t know what to do,please pray for me as well!
@@berhanemeskelalemayehu7351 wow ok ouch I'm so sorry
I love ❤Dr Friedman. He has done the decomposition 15 years ago. But unfortunately it came back years later. I’m hoping to have it done again. I would like him to do it again on je.
I have both types as does my identical twin. This is very accurate
Lianne, thank you for your comment on the video. I am not a doctor and can not offer you any medical advice. Try contacting The Facial Pain Association at their website listed at the end of the video. There, among other things, you can find contact information for doctors listed by state. If you wish to speak with Dr. William Friedman his contact information is listed there under the state of Florida. Hope this helps.
I see that previous posts recommend fasting for 2 or3 days.This is dangerous for diabetics so I would suggest checking with a doctor before fasting. This is also vital for those on ANY medication!!!!
I have it I’m 54 just got diagnosed. I thought I was going crazy ,I’m relieved that I finally have an answer!!! Going for a MRI soon
My neuro knew exactly what this was and had confirmation with an MRI (showed a blood vessel wrapped around the nerve). I was on Tegretol for a few years but came off because of the side effects. The last flare up I had, I sat and cried, it hurt so much.
Try homeopathic tablets talk to a homeopath.
@@Lizzi31 any benefit from homoeopathy you get
@@iballslide7604 it helped, I was given magna phos but what made the pain go away was a mouth guard. I didn’t realise that clenching my teeth at night caused the excruciating pain, I had a soft one made and it helped. It was TMJ and I was dished out tegretol by all the doctors and a neurologist as well. Do your own research, I was on Tegretol for many years, wish I listened to a physiotherapist who insisted it was TMJ but I thought the doctors knew better. I weaned my self of tegretol and took lions mane which is a mushroom as well. It helps with the nerves.
@@Lizzi31 I tried several homeopathic treatments with a naturopath but no luck there.
The Gamma Knife saved my life.
@@shannonkona I have to agree with you, the homeopathic medication and the Tegretol was just temporary relief. My second MRI after 10years showed that my trigeminal nerve was normal. My new dentist had a mouth guard made for me and since last August I have been wearing it, every night, my prayers were answered and my life is back to normal. I thank God every day, the pain was excruciating and Tegretol affected my liver.
Watching for a friend.
I also take Baclofen, Methadone, Cymbalta and other meds.
You are so right with that comment. Everytime I read that it makes me so sad. I am still trying to figure out if I have TN. I wish u the best and your not alone, alot of people are dealing with this. I refuse to have any injections by a dentist now.
The TN came from a dentist injection? Can you please explain what happened?
I wonder that too
@@CamilaPradaTV i expect what is ment by the injection where it was done hit the nerve that connects pathways if you will to tn nerves i understand because i have had injections in the past even yrs ago and i can still feel it yrs later when cold weather comes worse hence has put me off the dentist /find a more empathitic dentist a good dentist wont hurt you as some could/
I am 30 years old and started getting severe pain on the left side of my face that lasts for days. I've had to leave work, I've had to go to the ER, I've been bedbound for days because the pain is so bad. The worst part is that because of the medication I take for Epilepsy, I can't take other medicine for TN because of reactions and overdoses. Believe me, I tried. I hate this pain so much, nobody deserves this.
I was just diagnosed. I thought the achy pain was from TMJ. And I had previously dislocated my jaw and I thought that hurt. I was already on 2 of the medicines but I have to use the max strength ora gel the kind that numbs your mouth like a dentist and CBD cream on my face and neck I'll even put it on my scalp. I find ibprophen helps to 600 mg rx. And there's a trick. Find the part of your face that hurts on the side that doesn't there will be a trigger point. Massage that gently and it relieves the painful side. I've been doing it 20 min at a time it's weird but it works.
Good tip for the other side.
I was 20 when I started having the pain attacks. I thought there was something wrong with my ear, since that's where the terrifying pain seemed to radiate from. It took many visits to different specialists do get a correct diagnosis. Pregabalin (Lyrica) has had the best effect on the pain with practically no negative side effects. Now it's been three years without any pain. Dosage of 300mg twice a day costs me $100 a month. I life in Finland.
Oh boy hey there my first had my first bout of it in 2018 and I’m starting to have very bad ear pain again on the same side or just the right side of my face very scared that this may be the start of a flare up again are these usually how you can tell when an attack is about to come on?😳
@@haloSrising Oh dear. It depends and I can't say for sure. I rarely have pain anymore and I'm off medication. Sometimes you may know it's about to hit when you suddenly become "aware" of the nerve where the pressure is on, if that makes any sense. I'm on my toes every time that happens, anxiously waiting to see whether an attack is on its away or if it's a false alarm. If the pain center activates, it's cause for worry. Normally you shouldn't "feel" your nerves sending ominous signals.
How long you took the medication?
@@jash2199 I stopped taking it 5 years ago. I could've done it earlier I think but I didn't dare.
Update: no pain anymore, completely without medication. Getting off was a bit hard, you do get addicted physically
@@VNExperience thanks for replying, so you took the medicine for a period of four years?
If you’re just starting your journey know there is two types of tegretol (fast release and slow release). Only fast release works for me. Once a doc gave me the slow release ones and they didn’t work. Hope this helps someone who may have been given slow release and believes it doesn’t work for them. Most docs don’t know much about TN so you have to specifically ask for fast release type.
I know exactly what all of you mean .Thank you Doctor . We live to fight !
Katie Mikell, having it on both sides makes it bilateral. ATN refers to the pain as being Type II or facial pain of spontaneous onset with greater than 50% as a constant pain, per the classification system being used by The Facial Pain Association written by Dr. Kim Burchiel at OHSA.
Ask doctor about baclofen medication?
I have the same symptoms but instead of the teeth it make my nose painful ( inside) and very sensitive. when smells/odors stimulates the olfatoy epithelium it causes me migraine type headache.
have you had similar cases?
i have this pain for the past 6 years, i visited many doctors but most of the doctors called me crazy, nuts, anxiety problem, depression, stree and so on.. some doctor said what electric shocks and stabbing pain to face, you have physiological issues and it took 3 years to finally found out its Trigeminal Neuralgia but unfortunately here in Pakistan doctors are so stupid that they failed to treat my pain. she ended up giving me so many different pain killers but none of them worked on me and i see in your video that there is a drug called carbamazepine (Tegretol) which could at least give relief. i am gonna try again after concerning a good doctor. i am crying after this video, i have suffered so much with this pain and lived a stressful lived these 6 years not sure it will continue for the rest of my life. please pray for me.
Hello did you try the Tegretol? Is it effective? Do u still have pain? My mom has TN and i want her to try this too. Hoping for a reply thank you.
@@eleenilagan try lalap 50mg not sure if you have that there but generic name is Lacosamide.
It works like a magic. It takes 3 to 7 days to its full effectiveness. I used it for a month and after that I am real good 80 to 90 percent recovered. Now I take it once in a week.
@@samwd5039 Oh thanks for the reply Sam. Okay i'll try to find this one. Hope it helps my mom too. Thank you!
@@eleenilagan goodluck , hope it helps.
@@samwd5039 what is there is your mri , is any vessel pressing trigeminal nerve in your case
Could you please let me know how to get in contact with the doctors to find out more about getting help for my friend who is suffering from a severe case of Trigeminal Neuralgia. Many thanks.
Call this number 1-800-963-3608 Information is available to put you in contact . Best of luck !!
Shields MRI FIESTA series found ours. Get one. The surgery helps.
Sir, what's the recurrence rate after RFTC.?Pl let me know.Thanks
skitsy, I know what you mean about the Tegratol. At best it's a diagnostic tool. I took the pain rather than live as a zombie on that stuff. I understand your frustration about trying to describe an indescribable pain to observers- can't be done. One benefit fo trying to work and deal with the pain for 3 years is that now I can ignore normal traumatic pains like they aren't even there- lol, like Rambo.
I learned ventroliquism too, trying to talk on the phone without moving my jaw or tongue.
Im 31 and i have a big history with this problem. I wish with all of my heart to no-one have this death pain
You cant touch your face, you cant eat, you cant sleep, you cant wash your teeth you cant talk easy. For these all habits you must be so careful to avoid the pain or at least to be more mild.
The standard cure is the medication with no sure result's . It depends on the person .and also these all pils at least the ones i get they effects on the liver .its only for a few months.
I diagnosed myself with google then I seen the neurologist and she re affirmed that it was trigeminal neuralgia in the beginning I had a electrical shock in my lip nothing for a yr now I have electrical shocks plus my jaw hurts so bad when I eat or talk and last week mild migraines have set in I’m on Percocet and Advil but it wears off fast waiting for a CT scan and go from there
I am dealing with TN for 8 years, I am using carbamazepine, Tramadol Hydrochloride and Pregablin for pain management. But are facing severe side effects of the tablets, like drowsiness. People living in developed countries are lucky enough that they have very experienced doctors and facilities. I am living in a developing country, and some doctors suggested that I should manage the pain with tablets and not undergo any surgical procedure. But it's hard to bear the pain and the side effects of the medicines.
Can you please help me?
I have this both side everything hurts from nick to head its really suside pain
medication side affects ?
I had an powerful electric shock on the left side of my neck and head, upon waking up. I even saw many lights when it happens, and lost my senses, and fell on the floor. Became very dizzy afterwards, went to the ER but the internist never heard of such a thing, gave me w dizziness pills, and I went back home still dizzy. Two weeks later the hospital sent me a 22K ER visit. WHAT A PATHETIC COUNTRY THE US IS. I will not pay that bill as I have no insurance and live on survivors benefits, which is slightly above de Medicaid requirement.
i was diagnosed year 2018 ..yet sad to say doctors cannt give exact medication.Tegretol tablet and pain killer yet it doesn't help.
Is there any relation with severe depression? Or it is caused by depression too
My wife is suffering from tm .one doctor advised for tab Tagretol 400 , three times a day with 8 hours gap she took as per advised and got relief. After taking drug don't drive car or moped and don't go near fire .take care . thanks doctor
For complete cure and watching proof watch u_ tub channel by the name of Dr.Vikas Thorat.Ayurvedic treatment.
Tegretol can affect the liver, do research, try Bowen technique or a kinesiologist, or go and see a homeopath. I tried everything now I am taking homeopathic medication
I have bilateral... confirmed by many doctors. I am sick of bad doctors acting like it's only on one side.
I'm 20, and just been diagnosed. Had this since I was 18.
Jeremy Mitchell they completely misdiagnosed me after I insisted it wasn’t as bad as this - it’s chronic migraines instead which still render me useless and in agony but not like this! I’m glad I persisted cause they’re a lot more controlled now. Hope you find relief too.
Hey , i know its a long time, i am 20 now and recently have dealing with this ,any tips? I will get an rmn soon !
I’m currently taking 600mgs of oxcarbazepine and this has worked for 5 days. What is the difference between oxcarbazepine and carbazepine?
I have just been diagnosed with trigeminal neuralgia. My big problem is I have epilepsy and mild cerebral palsy down the other side. For epilepsy I am on a high dosage of Trileptal so they can not put me on Tegretol like I use to be on. So they just give me pain killers
So after calling my doctor, I was advised a dental visit to rule out having this. If the pain continues then yeah, pretty sure I have this.
I know it's been awhile since you posted but I have bi lateral ATN, atypical is the diagnosis of pain all the time as opposed to episodes and remission you may just have bi lateral TN. anyway I go to Barrow Neurological and even though I have Bi lateral ATN I was told I was a good candidate for Gamma Knife so check out that option. I got mine from a tonsillectomy
jennc2112 did the gama knife procedure work for you?
I have bilateral atypical trigemenial neuralgia and tn1 as well. The constant pain in my teeth ears nose and face is mostly constant. Tegetrol helps with the sharp painful electrical pains. But the constant very painful facial pains is hard to treat. It unbelievable painful at times and hard to treat
My son has bilateral TN
He is 16 and just got diagnosed 1 year ago after suffering for 4 years. Tegretol has helped currently at 600mg a day. Temperature changes is a trigger, a kiss on the cheek, smiling, chewing. His vision get affected as well.
My god he is too young. I been suffer since 2017, after the implant. God helps to your son 🙏 🙏
@@birgulkaya4863I had implants too. What happened with yours?
I was just diagnosed and even with all my illnesses had no idea this existed. I've been through a lot of painful stuff and this is by far the worse. I feel so bad for people who get it so young and that there hasn't been more awareness. I can't see out of my left eye when it happens.
My Trigeminal Neuralgia is no better after the Ghamma Radaition, the micro vascular decompression, the diff injections and burning nerve spinal stimulator no good Moto Cortex helped alot and brought dripugs lower but in 2 months I got seizures from it, that God wasnt driving. Its set so low now it hardly helps, I'm at max meds I'm afraid I know what's coming I have tried everything and failed, I want life not suicide cant they find a way to save us???
+Rene Urbanek All they want to do is fill us with meds and keep trying new approaches like surgery. I take Methylcobalamine which is another form of Vitamin B12 that dissolves under the tongue. It works! At least for me and many other patients who suffer with Diabetic Neuropathy and Trigeminal Neuralgia is responding to it. I also have Botox injections every 3 months. I really hope you can find relief. Heather Stubbs
Heather stubbs I watched my sister suffer from TN for years. She began having severe pain seizures closer and closer together. No meds worked anymore. I called her Neurologist at Duke Hospital and rushed her to their ER two hours away! After stabilizing her pain with multiple IV drips which took three days by a team of pain specialists, she stayed another three days before being sent to a health rehabilitation center for a week before going home. Three weeks later we took her back to Duke for her Gamma Knife surgery which was not pleasant for her. This was in April 2018 and she has no more severe pain, but just a few sporadic electrical shocks. Two months later and she has no pain, but the fear of having another attack is still with her. She is 79 years old and has her life back. We give God and her Neurosurgeon and team of Specialists all the glory! Family support is critical!
Mikael, it' tough to say you really have TN. The only medication for it is Tegratol, which is laced with side-effects. But it does identify TN. I would opt for the surgery (if TN) for long-term relief becaue someday they may find any medication to be unfit for human consumption. And then it may be too late and the damage done. My surgery was side-effect free and 100% effective. Lots of surgeons can do the surgery now, but I recommend Dr. Kopitnik- look him up. Worth the trip- see the US.
Are there any side effects like facial numbness from the surgery that you got?
My husband suffering for atypical Trigeminal Nerve, taking a lot medication, cirjury radiation. Nothing help. Can we can more information about this treatment. Thanks Valerio
What are his symptoms of atypical?
Since 1998 I suffered with Trigeminal-Neuralgia I have multiple sclerosis a lesion was found in my cerebellum.
My dentist said I need to see a neurologist. Dx 2006. Carbamazepine many tears till it stopped working. Now on a high dose of oxcarbazepine.
Neurosurgery told me I have MS. And Trigeminal neuralgia not good for any procedure's. Losing hope.
its all adjustment of spine and and nec biomeca have to balance the cerv & head have sucessfull results
+Chammica Wickramasinghe Well, no. Trigeminal neuralgia happens when something abrades the myeline sheath around the trigeminal nerve bundle. Each trigeminal nerve is actually a bundle of 150,000 nerves. So no, a simple spinal adjustment and balance are not sufficient to alleviate this, the most painful of all conditions known to medicine. To date, the USDA has no approved drug to treat TN, and the surgeries to correct it are offered only as pain management tools. In Europe, the initial clinical trials for Drug #802 have been promising. Drug 802 is the first drug ever developed specifically developed for the treatment of TN. It appears that this drug may decrease the pain associated with TN, without the adverse side effects of current drug regimens. This is all good news, even though it is too late for my daughter Emily. The Young Patients Committee very kindly dedicated their video to her memory.
Hi i practically I have worked on 5 patients successfully end up with no pain at all as soon they diagnose as TN patients(neurologic ostiopathy)
Is there a way to get rid of it without surgery?
Great video thank you. I've had TN since 1996, I've had two MVD's one in 97 that left me pain free for 6 years. the TN came back slowly and increased back to excruciating by 2010. I had the last MVD in 2011. I am now experiencing TN episodes again. do you have any thoughts on my next course of action.
Reading through the comments, I see yours is 9 yrs. ago.
Hoping you found relief!
I had 2 Gamma Knife surgeries & have been pain-free since 2000.
The thought that could come back is still a PTSD trigger.
I was told the MVD 'shim' can sometimes slip out of place after a while.
@@shannonkona is your trigeminal nerve pressing by artery in mri??
This sounds like everything I've had. But I have swelling in throat and tongue. I definitely know it's nerve damage😥
Have you looked into upper cervical chiropractic? It really helped me a lot they take X rays to see if your C1 atlas bone is out of position then do gentle adjustments to move it back so it isn't interfering with your spinal cord.
Chemotherapy brought it on
Is the quarter sized hole in the skull removed in a way that the removed bone can be re-inserted in that opening, or does the patient thereafter have this tissue covered hole?
The querter size hole will then by covered by a screwed mesh & in case you require a second MVD operation in future.
I didn’t know what was happening, I thought it was my teeth which I had them pulled. The pain was still there afterwards.
what helped you??
i suffer from this pain. it is terrible
Carbmazepine helps most of the time but there is an unpredictability with TN. I find that for me, cold temperatures act as a trigger. So in winter I wear scarves and beanies to keep my head and neck warm. It is not the only trigger though. When it was extremely bad I increased my Carbmazepine but then the blood levels became too high and I suffered just about every symptom you read about. It was as hideous as the neuralgia. I fought to lower my dose from 800 mg daily to where I sit now at 600 mg daily but where do I go from here when it is at it’s worst again. I too like others have considered suicide a few times. Until you experience the pain it is difficult to explain. I saw a neurologist and what an expensive waste of time that was. I got a real dud and would not be happy to see another one unless he came highly recommended.
Question, would I be medication free if I had the surgery?
Tegretol helps but not when you having a trigger at the moment I'm gonna come off of the meds and save my money to do the operation.
Try lidocaine, you have to get a prescription from your doctor. Just rub it on your gums and you will get relief for at least an hour. It numbs the pain.
Unfortunately, I had a perfectly healthy tooth removed because I thought it was the cause. And I do take Carbamazapine. IT works like a charm. I've seen horror stories of people who take it and it took weeks to work. At first I had to take the pill twice a day. Aftera few weeks, I could get by once before my head would explode. Now I go a week between doses. I seriously seriiously worry that one day the meds won't work at all. I think I would really want to die if I had to go through that again
you post this 5 yrs ago, do you still be in pain
?r u still in pain? Desperate for answers
Mine came out of remission and won't go back. I live my life under a comforter bcz the air in the room is a trigger all u can do is pray to Jehovah God inthe name of his Son Christ Jesus that I can endure and find help. Mine is Atypical bcz pain is on both sides. Grateful I found this video...
How do I count tact you guys, I have this
I wish we had doctors like you in SA. Please see the pain message we sent the pain clinic, it was shocking service,
Dear Pain Clinic
Unfortunately all the doctors cannot help, over 2 months and not 1 Dr had helped, quite sad for patients in need.
Yes i can send explanation for cancellation
Bottom line
Im not blaming or judge the good doctor but at time and still now it is very difficult when pain overwhelms you
On that Fridy i needed something special i was in trouble
The receptionist could see i needed help and kept reassuring me not much longer
I was hoping for relief but instead the Dr went his route which is probably correct but just not at that time
I look forward to a detox but wow i also needed something special just to sit and feel calm for a few hours if that's all
I hope Dr Amidas can help find a source of pain in my mouth and treat this then maybe in the future i will be ready for a detox
Thankyou Dr for seeing me
Sorry i failed my tasking
My pain won the day
Thank
Good
I was diagnosed 3 weeks ago and I'm really struggling with the side effects of Carbamazepine, but here in the UK the NHS is reluctant to do anything other than keep me on drugs despite the side effects which are really impacting my life :(
I got on the same meds about 2 months ago. Suicidal thoughts, memory is shit. I feel dumb cause I’m not focusing.
@@mizzmuhree9297 I'm so sorry to hear that. Can you discuss this with your doctor and perhaps find an alternative? I hope so. Wishing you well x
Amitypiline saved my life, I know everyone is different but I frequently was in agony for 4 days straight with no chance of sleeping. I'm in the UK too so worth asking
Crying in pain
Why is there no period of numbness and tingling before the onset of pain as in most idiopathic neuropathies?. Is MVD and Gamma Knife so overly accepted for treatment of TN that physicians are missing something important in the Maxillary Nerve Plexus?
Watch eric berg he tells you how to take pain away immediately
How do I watch it?
I had all my teeth pulled and it didnt help! So I guess i will be on pain meds for the rest of my life! I have had this for 20+ years. Its awful to live with. I wont do surgery because I have seen a lot of people have a lot worse pain I couldnt deal with worse.
pain medication will not help.only after consulting ,neurologist he may tell you have trigeminal neuralia or not . so consult neuralist
@Jeremy Mitchell i won't do surgery because if it gets any worse i would be dead i couldn't deal with worse then what I have now i have read of failed surgeries and people having worse pain. That's not for me. Pain medication doesn't take all the pain away just takes the edge off it could be sycologycle that it takes the edge off i also take a seizure medication also. I have been told I have TN i had a MRA and MRI.
@@CAJUNBEE hi is there any artery pressing your trigeminal nerve in mri and try homeopathy medicine Dr reckweg r70 drops and revert me back
i suffer for more then25 years i am looking for a MD in dallas n.c
I went 2 oral surgeon for awhile now the doc sent me 2 ent the doc was only in for less than 5 minutes tells me i have tmj & cant help me i was like r u kidding me..but i been dealing with this pain for awhile years im in my 40's & im like i need this pain 2 go away it keeps me from doing anything i cant get no help from the er @ hospitals nor from any1 why is this?
Amy Kennemore find a good neurologist. A good neurologist will know what the best treatment is for you. I was 62 when I had surgery after pain medication didn’t help me.
skitsy. My 'neurodoc' is a pioneer in the development of the decompression surgery. He's so good he owns his own hospital. He operated on me 3 years ago and cured me completely- 100%. THe surgery was literally trauma free, - surgery Thursday back to work Saturday (light), and I was 58 when I had it. Zero after-effects, zero pain. Look up Dr. Tom Kopitnik and tell him I sent you.
In recovery I thought I was their 'papa'. Didn't want to leave. lol One happy camper here. Can you tell?
Were is he
Don't do promotion here, everyone know this surgery is not safe and see Carla comment in comments section
I am suffering from 3 years,
I take 400mg of tegretol and 20mg of amitriptyline but it's not working. Is it safe to have surgery when you have epilepsy I take 1000 mg of keppra and 500mg of lamictal for my epilepsy so they said they can't raise my dosage of tegretol because I am on the other medication for my epilepsy
Surgery is not safe even normally , go for gamma knife if you want but don't Mvd it is too risky
Please help me I have same problem trigeno neurologia 15 years
sayed so sorry your in so much pain look into spiritual healing alot on the internet whoever made us knows how to cure us peace
In have had this for 20 yrs I am on tegretol.it helps a
lot but now I am in my 60s and my memory is now starting to fail me as well as having liver problems. I don't know what to do any .more next I now have epilepsy.
Have you tried Capsaicin on the gums?
I was on tegretol for over 10 years , my memory was failing me big time did some research and found the new tegretol without side effects till I had my MVD surgery , it has been 3 years now & I'm way better off without medication I only suffer some discomfort 0n certain humid months of the year .
I was on tegretol for over 10 years , my memory was failing me big time did some research and found the new tegretol without side effects till I had my MVD surgery , it has been 3 years now & I'm way better off without medication I only suffer some discomfort 0n certain humid months of the year .
What was your daily dosage?
I'm from india and live in a village .My mother age 65 and she is suffering from trigeminal neurologia last 15 years , neurologist recommend gabapentin and tegrital and she is taken this.
Some doctor recommend MRI and after surgery but we are not afford medical expenses.
I'm very frustrated.
You have to find a way to get he surgery. I take both the same medication's. This is agony. She could end up killing herself. Many people have, just to get out of the pain. It's that bad.
I am having horrific pain in my lower and bottom top teeth, into my jawbone, wrapping into my lower front gums and chin, into my temple, and sometimes the corner of my eye. It seems to be made worse by chewing and certain movements. If I tilt my head back, I get pain in my top right farthest back molar. I also have had symptoms of POTS for 13 years but haven't been diagnosed. I believe I have craniocervical instability, which is putting pressure and irritation on nerves and blood flow. This pain is worse than broken ribs, which I had 4-5 months ago. I sit on the couch and rock back and forth in pain
Have you looked into upper cervical chiropractic? It really helped me a lot they take X rays to see if your C1 atlas bone is out of position then do gentle adjustments to move it back so it isn't interfering with your spinal cord.
@@wesporter2176 is it related to thing that cause artery to press trigeminal nerve in brain??
@@iballslide7604 Yes if the atlas is knocked out of place it will cause inflammation and pressure on the arteries and nerves and affect blood flow.
@@GauravChauhan-jw3pe If blood and cerebral spinal fluid are not flowing properly through the neck it builds cranial pressure. Unfortunately chiropractic does not get big grants for research so the exact mechanics behind the healing aren't known exactly. Either way it's something I would try before costly surgery that isn't always successful and may have side effects.
@@GauravChauhan-jw3pe So I did atlas orthogonal they use an instrument that delivers a precise about 3 pound force to the side of the neck that shifts your C1 atlas to its proper position. They showed me my X rays and this bone was pushed about 2.5 mm to my left and one side lifted 18 degrees. Then they showed me my X rays after and it was level and centered and the pain I had in my upper neck is slowly going away and my symptoms. Over time as you heal you need to come in less and less to get checked to see if it's holding in place.
I have just recently have the symptoms of Trigeminal Neuralgia, never felt pain like it.
I do not want surgery. I heard it comes back after surgery from a lot of people.
I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
Guess he likes you because I've been praying for over 2 yrs.. Not only for me but for all sufferers This pain is so exhausting & depressing. Glad you feel better. I feel like God is still my only healer since the doctors don't seem to be.
PrincessAfrica3
Please Pray🙏🏾 For Me That God Will Take Away The Pain Of Having TN😢
Leo Lioness ofcourse i Will my dear . Please try the fast also . Its because of this article/testimony i was healed. www.cai.org/testimonies/healed-“trigeminal-neuralgia”-through-fasting-and-prayer
sharon silver please try the fast and prayer. Its because of the following article/testimony i was healed. www.cai.org/testimonies/healed-“trigeminal-neuralgia”-through-fasting-and-prayer
It has nothing to do with praying. I am an atheist and have had TN for 17 years. All I do is water fast for 3 days and the pain completely goes away.
The nerve gets inflamed. Foods cause inflammation. Fasting stops the pain.
if both trigeminal nerves were both compressed, would they both have to operated on to relieve pain on one side of the face?...
+pei bossman Generally speaking, a compression of the right trigeminal nerve would cause pain in one or more of the branches enervating the right side of the face. MVD or Gamma knife would address pain on the right side of the face. If there were pain on the opposite side of the face, a separate surgery would be required to address that pain. There are cases in which the causes of facial pain differ between the right and left side, and surgical options offered may differ from one side to another.
I have it inside my brain. Top left side of my head. When I swallow anything it can trigger it. I ave taken Gabaphinten but it stopped working for me. The doctor changed my medication to another seizure med. For now it's working for me. My doctor said in time it will quit working for me, and that I will need brain surgery. I do hurt.Let me tell ya, t hurts like hell. When it hits me all I can do is scream out loud in pain. When it happens then suddenly stops. Th pain releases that very second, but hit's me again at any time it see's fit. Could be 10 second or 10 minutes.It comes all at once. I don't get a notice. Like someone cold cocking me from behind with a hammer. Like my head is being caved in. It's a trip. Don't wish it on a soul. Praying during the spells can be my only hope when waiting for medications to kick in. First dose after an onset, I have to take double the dose to get enough in my system for it to help. Other wise it takes 2-4 hours of agony until it kicks in. Still have no idea what started it happening. My doctor tells me I have a rare case. The pain is like an ice pick or hammer, or both hitting my head with full force Well, Good Night. Sleep seems to help.
gee people i feel sory for you that you in pain i'm really bad pain like stabbing everyday it nuts
Thank you Dr. Friedman!! You are a miracle worker. My wife suffered for years and the last 6 months were the worst. We could not hold a conversation because she was always holding her face. After surgery the intense pain was gone. The numbness is there but the excrutiating pain is gone. We went to many neurologists and none suggested this, just more and more drugs. Thank you again Doctor for what you do, amazing!
We mentioned surgery to my moms doctor and he kept giving her meds and pain management appointments… it seems to be he just wanted to keep my mom in pain
@@saravasquez7826 my wife is still pain free the only drawback is it also kills the nerves to the side of the face also no feeling in the side of her mouth and the eye
you need to be careful of the eye as she has scratched her cornea 3 times and she cannot feel it, but on the whole worth getting the procedure.
Well if yiu read all.of the comments he completely.cut the nerve in one of his patients and she is in constant pain forever..so I would look for another surgeon, not this butcher.
@@patherbert6684 then go for gamma kinife it is safer then Mvd
@@Maria-gz3ke go for gamma knife ,it is safe