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A patient writes:
I am Cynthia Smith and was recently a patient at Mayo. I have written the following story to share…
Thanks to Dr. Link, and the entire Mayo staff, I am now pain free from 7 years of excruciating tongue and facial pain. I suffered from glossopharyngeal neuralgia (severe tongue pain) and trigeminal neuralgia (TN), the “suicide disease”. I had all the usual triggers which caused pain: swallowing, chewing, moving my tongue, cold or hot temperatures, etc. Because eating was so difficult, I was losing weight and strength while basically living on yogurt and a liquid diet.
I had been diagnosed early on and had tried every possible medication, with little or no relief. In desperation, we traveled to the Mayo Clinic and went to the emergency room at St. Marys Hospital. It took a couple days before I made it into the “Mayo machine,” an efficient, smooth moving motion of tests, MRIs, and consultations. On Sept. 4th, Dr. Link and his team performed a craniotomy where they snipped the 9th cranial nerve to correct the glossopharyngeal neuralgia and then did a decompression vascular procedure by putting Teflon pad into between the vessels and nerves to correct the “TN”. Both procedures were completely successful! With the help of my faith, family, and friends, I’m now enjoying the pleasures of daily life again.
Thanks to Cynthia for sharing her Mayo Clinic story. If you would like to share yours, click here for options.
Hello there,
I’m a Rochester reporter and I’d like to see if Cynthia would be interested in doing an interview about her experience.
I am wondering if she’s from MN? Or if she plans to come back to Rochester at some point again. If there’s any way you could help me get connected with her, that would be great. Thanks much.
Donny Rowles
reporter
507-440-2535
ABC 6 News, Rochester
My daughter is suffering with trigeminal neuralgia…were you able to interview Cynthia Smith? If so, do you have her contact information? I would very much appreciate it. Thank you, Susan
A person I know has suffered with this horrible disease for more than 10 years. He failed initial medications, including Gabapentin, Tegretol and Elavil. Two years ago he had the microvascular decompression with tremendous relief until a month ago. It returned with rage. He is tormented day and night. He is back on large doses of Gabapentin and Tegretol which leaves him incredibly foggy. He is so discouraged. We have an appointment with our wonderful neurosurgeon in a few weeks, but we want to go into the office informed. Please, is there anything else we can do?
Thank you for your note. We cannot diagnose over the internet. If you would like to learn more, here is a link that offers more background.
http://search2.mayoclinic.com/search?q=microvascular+decompression+&site=mayoclinic-org&client=mayoclinic-org&proxystylesheet=mayoclinic-org&output=xml_no_dtd&btnG.x=31&btnG.y=12
also, if you would like to set up an appointment, please see the number on the upper left that says patient requests.
Thanks
I am only providing a tidbit of information because I did not see that you mentioned Lyrica as one of your meds. It was a miracle drug for me, and even though I do still have “itching” in my face, the Lyrica keeps it under control.
Thank you so much for being an encouraging source of information during our difficult time with my husband’s diagnosis of this condition.
I was diagnosed with trigeminal neuralgia today – I was in the ER all last night with bursts of pain that were almost exactly like an electrical shock in my mouth and face under one eye. Originally, I thought it was a tooth nerve and loaded my mouth with tooth pain medicine – nothing worked. Maybe had 20-30 attacks last night and about 7 today. Praying the medicine works – I understand why they call it what they do. I cannot imagine living life with that kind of pain all the time.
I am encouraged to read these reports. My daughter has an appointment on January 3, 2010 at the Mayo Clinic in Rochester, Minnesota. We have researched every word on trigeminal neuralgia and feel that this is the place to go. My daughter is traveling from Clovis, NM. Hopefully she will have a wonderful story to tell after her treatment. Thank you again so very much for your stories.
Helen -
How did it go? I am on seizure medication to control my pain but after increasing the dose a couple of times.
I AM DOING THE SAME WITH THE SIESURE MEDICINE. NOW I’M LOSING MY SENSE OF TASTE. I’M 52 AND FALLING APART HAVE YOU EXPERIENCED OR HAS ANYONE EXPERIENCED THIS AND IF SO WHAT DID YOU DO TO FIX IT.I HAVE A CONSTANT SALTY TASTE IN MY MOUTH… THIS IS STARTING TO GET ANNOYING…ANYONE HELP ON THIS?
Joan, Mayo diagnosed her with trigeminal NEUROPATHY – not trigeminal neuralgia. Surgery is not an option. She was prescribed tegretol (i think that is correct) A any rate, she chose not to take any medication unless it become really necessary. She has only had one “off the chart attach” She does have rescue medication just in case it hits again. I don’t know how she lives with the stinging, burning etc. She is a school principal plus working on her doctorate. May God bless each of you. Mayo said it was probably caused from a virus early in life. Prior to Mayo she saw many doctors, dentist etc. This problem started in 2004 after a horribe auto accident in 2002. Who knows?
after last winter i can understand why they call it the suicide disease!
i was diagnosed 2 years ago. what a mess this can make of you. I don’t want to face another winter with this monster and am looking into chat rooms or whatever i can find to decide how to proceed. i know there are different methods to take and so far the different medicines are not working for me.
Any comments? From anyone? Help!
Ruth
Ruth, i was looking at natural healing meds. ,and found the name of a plant derived med. named [Negratex] i found it on the same site as all the other stuff. i have not tried it yet ,i had trigeminal neuralgia back in the early 70′s ,the procedure at that time was a glysaral block,,,whick was terrible..when the pain came back ,some years later,, i had a gamma knife procedure done ,,that lasted for about 2-3 years. now i am faced with ,,what to do again i have made an appt. with an accupuncturist ,only time will tell, hope this ,and God’s Blessing will help.
My name is Jennifer and I am 35 years old and just at the beginning stages of diagnosis…all the above information is so helpful! I will definatley be traveling to the Mayo clinic if further treatment is needed! I have been having the shocking sharp pains for 3 weeks and been on 2 different sezure medications…one seems to finally be working but leaves me a bit drowsy. But I have been off pain medications for 2 days. I had my first mri today and will find out the results tomorrow…hopefully all is ok but I just read recently that this is called the suicide disease and I can totally understand that! and nobody can possibly understand the pain until suffered! Thanks again for sharing!
I have suffered with Trigeminal Neuralgia for 11 years and have been through two procedures (Gamma Knife and a invasive surgical procedure with no luck at all. I am now back on two of my seizure medications (Tegratol and Neurotin) and assume that’s the way I’ll have to live the rest of my life (unless the side effects of the medications ruin my liver).
Diane P
I had vascular decompression surgery and am seeing double. It has been a month now and the eye doctor said the 4th nerve was pulsating. Has anyone else had this problem and/or have a solutation?
I have been diagnosed with TN and have suffered now for over 20 years. Started out in the Jaw, then to the Eye and now all over the left side of my face from eyebrow to neckline and throat.
I had a HMO plan and was given tons of meds, Tegretol, Baclofin, Ultram,etc.. I am now going every 3 months for 6 nerve blocks to my face. This has bought me a year back of my life but my pain is starting to come back even with the nerve blocks.
I am at my wits end with this and cannot go any longer. IT IS THE SUICIDE ILLNESS!! HAS RUINED MY LIFE!!
I am finally scheduled for a MRI and further test and to see Dr Christoher Duma at Hoag in Orange County Ca. I am wondering if this is a good idea or should I go right to the MAYO clinic. Any Suggestions?
Please someone hear me out there!!! Thanks Debbie
Hi, I noticed you are from Orange Co. CA. Me too. I was diagnosed with TN 13 years ago – currently, I have this ocurrance since the beginning of Feb. 2011 and still going on. I’m on 900 mg of Gabapentin. It is so painful..
christina
Hello,
I have been suffering with TN now for 2 years. I first started with Tegratol and than the pain went through it. I than had Vascular Decompression Surgery and that worked for 6 months leaving my lower jaw(mandibular nerve) parially numb. After 6 months the pain returned. We than jumped to Gamma Knife which has proven also not to have worked. I currently can hardly talk and on a liquid diet. Went for a second opinion and they recommended Mayo Clinic. Ready to do anything at this stage. Looking up flights to Mayo! Help?
I have had trigeminal neuralgia, TMJ and Osteoarthritis in my right side of my face for 31 years now and It totally ruined my life. My kids had to take care of themselves and I just laid in bed most of the time to keep from moving. I spent thousands and thousands of dollars over the years to try and find out what was wrong. I finally got relief from a dentist but it still would come back and I then went to a chiropractor who helped me tremendously but 3 years ago, it came back with a vengeance and it then moved from my face to include around my nose, forehead and temple. When I would take my shirt off my head, I felt like I was being scalped by a indian. I know I have been told it just gets worse. I started out with Tegratol and for 2 weeks was pain free but it came back so I went to a neurologist and he put me on trileptol but now, my blood work is over the normal range. I have decided to go thru the Mayo clinic in Minnesota so hopefully it will help me to get pain free. I am suppose to be able to get a appt. in March or April.
Hello – My father suffers from the pain of Trigeminal Neuralgia, and I’m wondering if anyone knows of any alternative medicines, or vitamins, that could help him with this pain.
Thank you in advance for your reply!
Paula
I’m sorry you are having so much trouble, I had a misdiagnosis and a dentist removed all my teeth before I moved to Arizona and saw doctors at the Barrows Institute, I had the Gamma Knife and a few months later had mvd, it worked for a long time but something had changed. I now have the pins and needles all the time and sneezing fits all day which is controlled by the trigeminal nerve, I miss my teeth and miss my freedom. Keep spreading these stories, awareness is sooo important. Good luck with your doc, I would see if they will recommend you to Mayo also.
Just been diagnosed after, physical therapy, root canals and a tooth removal. Is this what I am in line for…what I am reading above? I can feel the pain behind my ear, and is under my eye, and jaw, but at this point seems manageable. I just turned 60, and am a photography teacher that loves her job!
I have to wait 6 weeks for a neurology consult and have just been handed a Rx. What’s the song…”Is that all there is..”
Louanne
Lovely just what I was searching for. Thanks to the author for taking his time on this one.
Don’t lose hope! I had severe attacks of TN that would last about 20 minutes, five times per day. Nothing helped until I got a proper diagnosis and Tegretol. The Tegretol greatly reduced the ridiculous pain, and after a few weeks it all just went away…
I have been dealing with this for about 3 weeks. Started off with headache, jaw pain and tooth pain. Nothing was helping even after seeing several doctors, chiropractors and physical therapists. Ended up at the ER where I was admitted for 4 days and just drugged so I could sleep. Saw a neuro who did steroid/cortizone injections in the back of my head/neck just 4 days ago. Pain is still here. My upper front teeth hurt the most along with headache. The pain is constant but seems to get more intense as the day goes on. I feel like there is a lot of pressure in my head. I had a ctscan, MRI & MRA, and bloodwork…neuro says neuralgia. I am 37 years old and the mother of two kids. What is the best course of treatment? I cannot stand being drugged up on pain killers that really don’t help much.
Unfortunately, we cannot offer specific treatment recommendations via this form of communication, but if are interested in making an appointment here, please contact: Arizona: 480-301-1735, Florida: 904-953-0853, or Minnesota: 507-284-2511.
i need help from the mayo clinic. After 25 years of horrific suffering i am being treated with tegetol and diagnosed with tn. on medi-cal and unable to practice my profession these last 25 years, I doubt any doctor will help me because i have been reduced to poverty. it is called the suicide disease and without help i see myself going that way. Can anyone withstand tn undiagnosed for as many years? tegretol was the first time i felt like my old self but with brain fog. idecided i would rather be in a wheel chair with the side effects full on, then return to the living hell without tegretol. I see doctors who don’t increase tegretol as needed and er doctors refusing to hydrate me with an iv which is very good for TN– when can i find a doctor that understands TN in Medi-cal? Hopeless in northen california
Sonia, Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at http://www.mayoclinic.org/ under “request an appointment.”
Why don’t you contact the skull institute in LA? They have a neuro surgeon there that does endoscopic vascular depression surgery with fabulous results. If I lived closer, I am in Florida, I would go to him in a heartbeat. I had that surgery done in Gainesville Florida in 2001. I wouldn’t say it was perfect but I can eat and talk, do have some problems brushing my teeth. Wouldn’t say medication is the answer as you feel drugged all the time and eventually the pain comes through.
My good wishes and luck. Don’t give up! Valerie
anyone endure alcohol injection as a solution for trigeminal neuraglia?
I don’t know what to think…I’ve had this since 2005 when I went to help at Hurricane Katrina…came back with a tick bite…on my thigh…I received only 17 days of doxycycline and after that…just hit me one night at work..and since I worked at the phone company in a surveillance group..I had to talk…was in tears…went to emergencyroom and was sent to an oral surgeon who told me what I had…went to a neurologist and put me on Tegretol for 5 years all was good…had to change meds as tegretol no longer worked..am taking cymbalta and carbitrol for the past two years..working ok..but my insurance is now dropping payment for cymbalta all together..so my meds and insurance are about $900.00 a month!!! Had the Gamma Knife but didn’t work for me…didn’t call surgeon back because I was afraid he wanted to try something more like this cage sitting on my head…was a bit painful….I need help…this is crazy….worked 39 years at the phone company and now when I start receiving social security a big chunk will now be taken out…I do have some horrid pain intermittently…trying to figure if its what I eat…if I’m not chewing enough…brushing my teeth gets pretty horrible and some days I just cry cause I feel helpless…I was always so active and still try to push myself to have some exercise…make myself chew even though the pain can be excruciating and I just cry sometimes “I want my life back”…my tongue does suffer at times as my lips and the whole left side..other times no pain….sometimes I think I don’t want to live like this…it’s just too hard…when I go out to dinner with my boyfriend I have a hard time eating most of the time…I notice that if I’m really stressed the pain is worse…I wonder if its my handbag that goes on my shoulder…is it my heels and started to wear flatter shoes…I wake up with stabbing pain and go take pills but alot of times the pain is just still there…I wonder sometimes if I’m not getting enough fiber, or veggies…sugar seems to make it worse..if I grit my teeth sometimes the pain goes away but still comes back…try doing stretches…not exercising like I used to…not running….when I try to do more exercises the pain comes back if its been away…try drinking more water…a glass of wine…temporary pain reliever sometimes…right now its not bad…got some fair sleep…have had bronchitis and my jaw has been killing me the whole time I’ve been coughing, but now that I’m getting better the pain is going away…the cold weather seems to affect my jaw pain too…I’m trying but I’m I a lost cause? I’m too young at heart and full of life to have this thing cramp my style…help…do you have a surgery that would work for me??? Sincerely Laura
I am 72 y o and have been suffering TN for about 10 – 15 years. My family Dr. recognized my classic symptoms and put me on tegretol. After a successful month pain free, my liver became toxic and I had to go off of it. Went to a neuologist and she put me on neurontin which I have been on for many years now with my max dosage presently 300mg three times a day. I have alot of break through spasms that seem to go in streaks. Months, weeks on and some weeks no pain. It bounces between my upper lip up thru my eye. If it were constant I could not bear it. I now feel that due to my age I need to be re-evaluated. I am about 3 hours from Mayo but have Medica insurance. I have heard that Mayo does not accept this insurance. Is this still true?
HI Mryna, here is a link for more information on Mayo Clinic and our Billing/Insurance Office. We hope you find this helpful. If you have further questions please contact us. Thank you. http://www.mayoclinic.org/billing-rst/
My uncle had sporadic bouts of TN pain for about 20 years and then he had 2 years of constant pain and underwent the gamma knife which helped him. He was around 74 when he had the surgery. My oldest daughter is 30 and has TN and has had the symptoms since she was 19 years old and was finally diagnosed when she was 27. My youngest daughter is 10 and has symptoms of TN since she was 8, she has not been diagnosed. Both of my daughters symptoms are stabbing pain in their right temple that makes a pain in their left eye. My oldest daughter gets blurry vision in that eye when it happens. My youngest daughter had her first experience with blurry vision from the pain 2 weeks ago. She had not had blurry vision before this. Recently though (in the last 10 days), my youngest daughter has been becoming dizzy and seeing black spots before her eyes. Is this a symptom of TN? She has fallen down 4 times in the last 10 days, plus many dizzy spells everyday where she hasnt fallen down. She is going to see an eye doctor tomorrow….but she cannot get in to the pediatric neurologist until June 3. Can you tell me if the dizzyness and black spots could be a symptom?
Thank you for your note. Unfortunately, we are not able to diagnose, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to schedule an appointment you can call any of our appointment offices at Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511. I am attaching a link to a page on our website that may provide some additional information for you. http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446
I didnt ask you to diagnose. I asked if dizzyness with seeing black spots could be a symptom of TN.
My husband was diagnosed with Trigeminal Neuralgia about 2 years ago. (I am not sure how long ago it was.) His pain is in his right eye and now the pain goes from there along the side of his head to the back of his head. Before, it was diagnosed he was given Hydrocodone which made the pain go away. Also, we thought his right eye was bulging. He finally went to a different doctor who diagnosed the problem as Trigeminal Neuralgia. The pain went away before he tried the medication from the new doctor. The pain came back a couple of months ago. He has taken the medication the doctor wanted him to take plus he has taken several other meds. There is one more medication his doctor wants to try. (Now they say his right eye is not bulging. His left eye is sinking due to fractures around that eye from being hit in that area with a baseball as a teenager.” The next step would be the Gamma Knife surgery which scares both of us. To my knowledge they have not said anything about a tumor pressing on the nerve. Reading the stories of the people above doesn’t make me feel better. We live in Richmond,VA. Do you have any other recommendations? Would it worth it to come to the Mayo Clinic in Jacksonville, FL. for treatment?
Thank you for your comment. We suggest that you contact the Appointment Office in Jacksonville, Florida at 904-953-0853 and the representatives will be able to assist you. Thanks again!
I have had severe pain in the jaw and tongue since a wisdom tooth was removed. Was told the nerve was damaged during the procedure. Does anyone know if any of these procedures will work in this case? Thanks!
I had a car accident 1993, had nerve pain in my arm. Then in 1994 I had surgery for Thoracic Outlet Syndrome. They removed my Scalene Muscle .During surgery they found adhesions all over my brachial plexus and removed them. I came out of surgery worse than when I went in. Too long of a story to get into. I was then diagnosed with RSD/CPRPS and Brachial Plexopothy.
After surgery I had horrible headaches and facial pain for short periods of time on the right side. I was told it was normal with RSD. I have taken every anticonvulsive meds and pain killers over the past 18 years. They either do not work and/or I cannot function on them.
I now have HORRIBLE, CONSTANT pain in the right side of my head, face, burning and pain in my ear canal. It feels as if someone is trying to force a hot poker with ICEE HOT on it in my ear. I have had 3 root canals and 2 extractions. My dentist will not remove any more teeth, he sent me to an oral surgeon who said nothing is wrong with teeth. I cannot function the pain is so bad. My ENT said I have Trigeminal Neuralgia.
I just filled out the online request for appointment and I hope I can get in ASAP. I do understand why it’s called” the suicide disease”. Nobody should have to live like this. If I do have TN I really hope The Mayo Clinic can help me. I am desperate to stop the pain.
I’m not sure what happened to me. Like many others here, just seemed to come from no where. Too much stress, clenching my teeth, TMJ, who knows. I’m not even sure TN is or isn’t what I have. I had an MRI done this past February 2013 and the Neuro that looked at it ruled out MS and stated that my symptoms don’t match TN. She diagnosed me with Atypical Facial Pain in like 10 minutes of leafing through my MRI’s. She summed up 18 months of agony in a few minutes of her time and 200.00 out of my pocket. But I have once again, a severe sinus infection. I have sinus issues and had maxillary sinus surgery 8 months ago. My symptoms are constant burning pain in my gum tissue with extreme sensitivity to even the touch of my own tongue, let alone anything like food. And a sense of pressure and burning sometimes throbbing, in all my upper teeth mainly on the right side but also on the left upper teeth. The pain I feel in my teeth is that of extreme hypersensitivity to touch, hot and cold. My tongue hurts and burns on the right side constantly. Now my right ear hurts inside and I have ringing in both ears. And severe pain in my right jaw too that came around the same time the ear and neck pain came. The sinus surgery did not help alleviate the pain. And 8 months later the sinus issue is back. I like others, live in Chronic and constant pain. The onset I believe was when I took an antibiotic called ZPAC for a sinus infection. Oh, forgot to mention that all of my maxillary teeth became somewhat loose after I completed the antibiotic. And the dental profession has no idea what I am talking about nor what to do. All areas of dental check out good. I have spent tons of money exhausting every effort to find help and relief. I have laid on my couch or bed for 18 months barely able to even walk from the couch to the bathroom. I’ve lost 45 lbs. And one day as I passed the mirror to go the toilet, I looked in the mirror and had no idea who was looking back at me. I didn’t recognize myself. Since then my life has ceased. I’ve lost my job, people I thought were friends, my entire family has just stopped calling. The pain has taken everything from me. I hurt so bad that I just cry. I don’t know what else to do. My son is angry with me and doesn’t seem to understand and will never comprehend the pain I live in. I applied for medical insurance and by the grace of God was approved. Had it not been for the one person who has seen me through this and been my Angel, Joanna Jones Tokley, who I call Mom, I wouldn’t be here. She made me get off the couch and go to a doctor. Who put me on Amitryptiline, Gabapentin, Hydrocodone, and xanax. I am greatful for this doctor, because she gave me enuff relief that I am able to at least get up. But I am not pain free. The pain is now a 10 from a 15. The hardest part of all this is losing my sense of self in this pain. I was once a cool down to earth chic that loved life. Enjoyed family. The worst is the loss of the relationship between me and my 18 year old son. He’s getting ready to graduate in a few weeks from high school. And I am fighting to be here to see that. He says he just wants his old mom back. And I hold a tremendous amount of guilt because I want that for him and for me. Yet Instead I exist in this drug induced pain fog. That I just seem to drift through life daily. Crying and praying to God to either help me or take me home with him. There is no life in this. I admire those of you that are,like myself, still in search of answers and relief. Oh, and most of my hair fell out. I lost so much weight, that I guess lack of nutrition caused my hair to fall out too. Nice huh? I pray that we all find help. I am at this point suicidal and think of it at least 100 times a day. I stay here for my son. Sometimes I think he wishes I would die so that he does’t have to watch me live this way. I’m ready. Just trying to hold out for ONE MORE DAY in hopes that God will point me and my doctor in the right way. God bless us all in this life and hand we have been dealt.
Peace to all Gods People. I wish us all to be free and free of pain!
Love,
Jamie
Jamie, we are extremely sorry to hear that you continue to suffer with your facial pain. Please realize that you are not alone. We strongly recommend that you contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) http://www.suicidepreventionlifeline.org. You should also speak to your physician about these thoughts because he/she will refer you to a specialist who will be able to help you.