Added: 1 year ago
From: MyMSJourney
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  • Have you ever considered one of the surgeries for TN? I have been battling TN for about 8 years. I have been on Neurontin but it seems to be less effective lately. My family doctor is now sending me to see a neurologist.

  • Great Video! Thank you :-)

  • I just had Microvascular decompression surgery to correct TN. That was 3 weeks ago and the pain from surgery is worse than any TN pain I ever suffered. I hope that one day I will be thankful for this procedure but today I regret it more than anything i have ever done! Yes, I have been TN pain free since surgery but again, these headaches and the hearing loss are far, far worse.

  • sorry to hear you have TN too. i do not have MS, but i got TN after a concussion in a freak accident from the severity of the blow to my head (on the right side) but, i can relate to you. i also have called my doctors in tears because of the intensity of the pain. and, i know what you mean about how it is hard to talk or eat too. and the triggers! same here - loud noises, cold wind, etc. but thanks for this great & informative video. and i hope your TN goes back into remission soon. take care =)

  • I have had this disorder for over a year. My neuro said that I am the first case he has seen in 30 years. I have been treated for migraines and this disorder has been torture. This is the worst pain that I have ever experienced and it truly makes you want to die sometmes just for the pain to end. I too am too young, 33, to have the diagnosis, but I have it. Plus, it's bilateral. Being shot can't feel worse than this.

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  • There is a better solution than medications and surgery. Type in Trigeminal neuralgia and chiropractic and watch some of the videos of real patients that have greatly benefitted from chiropractic. Chiropractic saves lives...drugs don't!

  • HELLO, MY NAME IS KENISHA MACK OF LISMAN AL.  I THOUGHT THAT I WAS THE ONE WITH THIS PAIN. AT ONE WHILE I FELT LIKE I WAS GOING CRAZY. I ALSO HAVE THE SAME PROBLEMS THAT YOU HAVE. I AM GLAD THAT I AM NOT THE ONE. I HAD TO QUIT MY JOB BECAUSE I WORKED IN A FACTORY. I WONDER WHY THE PAIN IS ONLY ONE THE RIGHT SIDE OF THE FACE. FEEL FREE TO CONTACT ME AT MACKKENISHA@YAHOO.CON. I HOPE YOU GET BETTER AS I. GOD BLESS YOU

  • I was prescribed tegretol yesterday at the ER. My dentist and endodontist suspected I have this. Last night the pain was SO unbearable, so I went to the ER. Thank you Dr. Garrit for taking time and researching my symptoms. I am getting so much strength from the TN community. I thought I was going crazy. And YES, I have a very low tolerance for loud noises now, where before it was no issue. Anyway, thank you for your video. I will be getting an MRI/MRA next week. (The MS link scares me.)

  • well u had the lighter version of it cause u could email ure doctors man i was creepin on the floor the whole night when it happend ,the pain is so bad its unhuman 

  • Thank you for sharing. I have tried to journal what causes the big pain flair-up..I have experience child- bearing labor pains, had a inexperienced dds perform a root canal on tooth 31, had schiatic nerve pain and none can compare to trigemina..It feels like I got hit by a flash of lightning...

  • @MyMSJourney If we have ms and been diagnosed w TN its anyway we can get the surgery or it wont work on us?

  • SEARCH FOR THIS "Testimonial for Dr. Scott Schlesinger"

    TAMIKA, GOD BLESS AND BEST WISHES!

  • Check this out Tamika, Best wishes and God Bless!

    ]

  • Thanks for posting up this video and your story/experience. My partner has been suffering with TN for around 5 years now and has been doing it drug free - it's helpful to see the stories of others who have gone through the same thing. Thanks ,Tom

  • Also, check to see if you have any amalgam, mercury in your mouth, don't get anymore immunization, booster shots, stay away from processed foods, sugar substitutes, diet anything . Most people just won't even do the Greson Therapy because they just got to have their food. So I guess they rather deal with the pain and cover it up with pain pills and die from the pills because now you screwed up your liver and some other organ. It hurts to see people in so much pain when we need to go back to wh

  • All drugs are liver toxic. Maybe going the natural way is the best. Pretty soon it will not work. Eat all organic, coffee eneme, get a juicer to make your own organic juice. Go to Gerson.org. To learn how to do this therapy. I am now helping a friend that has this disease and she is getting results. She is off one of her medications. This Gerson will help heal you naturally . But please read the books and look at the documentary "The Beautiful Truth". God bless you in your healing.

  • Thank you for sharing. I have had TN for the last eight years and has been well controlled on medication (Topamax and Baclofen). Only have had a few times of break-through pain but about two and a half months ago, the pain started up again and have had a horrible time with pain, migraines and all. Was hospitalized it became so bad. Working on controlling again.

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  • hey I was just watching your video,I noticed you take your medication a lot of times a day,I am a pharmacy student and I suggest you talk to your doctor to discuss an option to get some higher dosage of your carbamazepine medication so you wont have to take it 5 times a day or you can change to the long acting version of the same drug so you can take it ones a day.

    but you need to talk to your doctor first.

    btw make sure you take your medication at the same time if a day everyday

  • Thanks so much for sharing your experience, you are SO brave. My dad is suffering from this since the past 6 yrs after he got his teeth removed and started wearing dentures. He is on Tegretol with the dosage increasing steadily, despite that he has severe pain intermittently. Right now, its again causing him severe pain more often and he is barely able to talk or eat. His eyes have started blurring because of the medicine and so he hesitates to increase the dosage. Looking around to find a cure.

  • I have it as well, I've had it since 2008. I am now taking Lyrica as well as baclofen. It helps for awhile and then I'm in pain again. My pain specialist wants me to get Gamma Knife to treat it. I'm 38, I do not have MS. It is also on my right side. I'm so fed up, my family and friends have no idea the pain I am in.

  • I have it as well, I've had it since 2008. I am now taking Lyrica as well as baclofen. It helps for awhile and then I'm in pain again. My pain specialist wants me to get Gamma Knife to treat it. I'm 38, I do not have MS. It is also on my right side. I'm so fed up, my family and friends have no idea the pain I am in.

  • but it is starting to were off and the Pain is starting to Come back stronger everyday , you and I know it is hard to Talk and Stay Foucus Im trying to stay Focus and I have even Called Dr Ben Carson and he explained to me about the gamma knife Im trying to decide on the gamma knife

  • Hello Tamika, I just Found out that I have Trigeminal Neuralgia after a Sinus Surgery Back on January 8,2010 cerebrospinal fluid rhinorrhea where the Cerebrospinal was dripping out of the Nasal and the ENT explained to me that before he do the surgery the Risks one was lost the Optical Nerve and the Other was Trigeminal Nerve Damage and Thank GOD the Optical Nerve was Saved but trying to live everyday with this Trigeminal Neuralgia is hard , Im currently taking Oxcarbazepin

  • i am going through this now, i just learned the other day what was happening to me, and believe me, i know the pain, and i can barely stand it without going in tears..i have no clue on what to do or where to go. and i cannot bare the pain anymore. I am going through pain pills like M&M's.

  • @RockTina143 welcome to my mom's life, for the last 10 years.

  • Yo how are you

  • Thank you for your video, I was diagnosed last Wednesday and am very sacred. Thank you for making me feel less alone in this.

  • I am with you on every step of this. I am taking the gamma ray knife next month. Worth considering.

  • I'm really scared! I was on a beauty course 5 months ago and this stupid bitch gave me the worse facial massage ever! And the day after I got numbness down the whole left side of my face. And on and off over the past 5 months I've gotten heads aches and numbess, but over the past 10 days I've been getting a sharp stabbing pain an I am currently waiting for an MRI scan. And my stupid dr sent me to A and E today! And the dr there tells me she thinks I have trigeminal neuralgia. I'm very pissd off!

  • @eazypeezy The facial masage is not reason for your TN ! This is only triger, you have it already , and it is matter of time when this will show up...My triger was minor dental work, less than anything I did before, but it was enough to triger TN...

  • @Bokicazver I guess what I am trying to say is, can Trigeminal Neuralgia cause physical symptoms?

  • i dont think i have TN .. i havent gone to a doctor .. mmm.. only half my face hurts.. but not just a portion .. but my whole half face..it's not like electric shocks of pain but constant pain .. i feel my face kinda like pumping with pain all the time.. half my teeth are numb from pain .... my eyes are crying even though i dont feel like crying... it started today like 4 hours ago and hasnt stopped once ... help... what is this?

  • I was diagnosed in 2009. I did an MS work up for other symptoms before I had TN symptoms. They said I didn't have MS and gave me anti depressants. A week later i woke from my sleep freaking out in pain on the right side of my face. Went back they told me it was TN gave me pain meds and Trileptol. That didn't help. Finally it went away and now in 2011 it's back with avengeance. It's in my upper and lower jaw and my salivary glands on the right go nuts. I'm afraid I'm gonna drool when I talk.

  • Gday from Oz, i also have TN watching people such as yourself talk about this painful affliction really gives me hope, good luck and best wishes.

  • They found my TN rather quickly but my history led them right to it. I had had brain surgery almost 10yrs before for 3 small tumors that, while luckily for me, were NOT malignant, on the unlucky side, they were intertwined thru-out various auditory and trigeminal nerves. Because of this & the end result being worse if cutting thru the nerves, they performed a decompression first. Worked for almost 10yrs exactly...then the Trigeminal Neuralgia started at full speed. More tumors were found and ag

  • Thank you for this video. I am a middle aged African American brotha suffering from TN for 2 years. I have never to this date seen or heard of another black guy with this condition. I have asked my Doctors, Chiropractor, TN Association Support Leader, TN Association people in Gainsville FL, and blogged with other TN people, and no one has heard of a black guy with this condition. Please let me know if any knows of one.

  • Thank you so much for this video. I'm a nursing student learning about Trigeminal Neuralgia. It's very helpful to associate the disease to a person. You are so brave. God bless you!

  • I have this disease, and thats exatcly what it is a disease. Since 2001 it feels like I have a toothache in my face all day long and night. My teeth, ears and right eye tick everyday. I saw my neurologist friday and I told him I need that surgery.. The botox is not working any more. I was afraid before to have the MVD surgery before, but I'm in dire need of it now I have been getting botox every 3 to 4 months, had it last month and last friday thats it for me. I'm ticking right now.

  • Just wanted to say that if you're neurologist recommends microvascular decompression surgery, definitely do it. I had the operation and my only regret is that I didn't do it years earlier. I haven't had any pain in three years, not even a tingle. The pain is just gone. Before MVD my pain was so bad I was only getting one hour of sleep every four days, not exaggerating

  • Thank you so much for this.... regards from Belgium

  • @sofiya060 Wow all the way from Belgium, how exciting. Best wishes to you!  Tamika

  • Thanks for sharing. I have this disorder also!! I haven't had a really bad episode in the past few years, but I do get frequent jolts. Been experiencing something in my ear now! I wouldn't wish this on my worse enemy!! God bless You!!

  • @smoovetip God Bless you too and you are right, it's not anything I'd wish on an enemy either! :))

  • Thanks for sharing. I have this disorder also!! I haven't had a really bad episode in the past few years, but I do get frequent jolts. Been experiencing something in my ear now! I wouldn't wish this on my worse enemy!! God bless You!!

  • Great explanation of TN..tks!

  • Again, thanks for doing these. I hope that treating ccsvi will help eliminate many of these problems.  I'm fortunate that I have not experienced the pain of others in this way. A couple of friends have similar sensations but in other parts of their bodies. I appreciate you. I wish my own videos were so clear and concise. :) - Judy

  • God Bless you too Mark. After watching this video I don't think I'll have a problem saying the drug name again, LOL!  Tegretol is much easier to say :)) - Tamika

  • Tegretol is much easier to say.

    Welcome to the family.

    God bless you.

    I have found much joy in the people on YouTube and I thank God for MS bringing them to me.

    Now I just wish God would cure the MS, already!!

    My name is Mark, and you have a friend if you need one.

    Mark

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