A journalist, Marcelle writes to raise awareness for trigeminal neuralgia, a condition she was diagnosed with in 2013.
I survived what many medical experts agree is the "worst pain known to humankind." Here I share my personal story ending with a successful microvascular decompression (MVD) procedure, which is a type of brain surgery. However, I am not cured.
I look at my life now through a different perspective and cherish every day. I lack medical training, so I cannot offer true medical advice or recommend any specific treatment. What I can do, however, is share my own patient experience with this disease, detail what worked for me, offer support avenues and resources I found on my journey, and just maybe provide some hope to those warrior patients suffering each day from this condition.
Disclaimer: I am not a medical professional. This account is from my personal experience as a patient. If you are experiencing facial pain symptoms, please seek out the expertise of a medical professional.
What Is Trigeminal Neuralgia?
Trigeminal neuralgia (TN) is a debilitating nerve pain disorder often described as the most excruciating pain known to humankind. TN causes facial pain, usually affecting one side of the face, where severe, electric shock-like pain hits typically in the lower jaw area, teeth, gums, and cheek. The pain can sometimes be felt in the area around the nose, ear, eye, and forehead. Irritation of the trigeminal nerve causes the pain, usually by a compressing blood vessel or vessels, and less commonly by a tumor, multiple sclerosis or other abnormality. It is sometimes referred to as the "suicide disease," based on historical context at a time before medical treatments existed, when patients had little or no options.
This illustration shows the distribution of the three major branches of the trigeminal nerve that feed the facial area. Pain may be experienced in any or all these areas. The pain often occurs in waves or "attacks," lasting anywhere from a few seconds to a few minutes and sometimes longer or ongoing. Pain is easily triggered by simple acts such as eating, talking, shaving, teeth brushing, smiling, putting on makeup, touching one's face, or even a gentle breeze.
The video below shows Neil Martin, M.D., FAANS, and chairman of the UCLA Department of Neurosurgery, discussing trigeminal neuralgia in detail, including symptoms, causes, and treatments.
My Trigeminal Neuralgia Story
The words below are my personal story of my experience as a patient with trigeminal neuralgia starting in 2013. I am fortunate that I no longer experience the severe pain symptoms, nor the ill side effects of the medication, but the pain cannot escape my memory. I also live knowing that the pain could return.
My First Shocking Pain
On a cold, Sunday afternoon, what felt like a sudden bolt of lightening struck my face out of nowhere while standing in my kitchen (patients often remember the exact moment and location of their first pain). I dropped to my knees. The excruciating, electric-like pain attacked the left side of my face—my teeth, my gums, my cheek, my jaw. It felt as if a dentist was drilling all of my upper and lower teeth on the left side at the same time, without novocaine! At the same time, it felt like someone was cattle-prodding my cheek and jaw. I honestly felt like I was dying. If I had been standing on a cliff at that moment, I would have jumped off to escape. Then, as quickly as it came on, it disappeared. It returned a few minutes later with a vengeance, disappeared again, came back and on and on throughout the day. I lay curled up on my floor waiting for each horrific session to pass.
Doctor or Dentist?
I found myself at my family doctor's office the next morning. I thought to go to the dentist first since it seemed my pain came from my teeth and then radiated out but my dentist's office was closed on Mondays. That turned out to be the best thing that could have happened to me that day as so many TN patients head to their dentist and often times have teeth pulled to relieve the pain to no avail.
After punching away on her laptop, my doctor figured out that my pain might be caused by this thing called Trigeminal Neuralgia or possibly a few other things I’d never heard of. She referred me to a Neurologist to figure it out. She prescribed a couple of strong pain medicines to get me through until my appointment; they didn’t work.
Diagnosing TN Early
My diagnosis came in just a few days. Most patients with this condition wait months or years for a diagnosis. Often, because the pain targets the teeth and jaw, patients end up in a dentist chair, having teeth pulled to relieve the pain. The problem is that pulling teeth, root canals, and so on do not work. The tooth is gone but the pain remains. Many dentists and even doctors do not have experience diagnosing or treating this condition since it is a very rare disease. Getting diagnosed is half the battle—the first battle I won in this long ordeal.
My First Neurologist
In horrible pain, I struggled to sit waiting in the Neurologists office. I was desperate for an answer. It took him all of ten minutes to diagnose me with something that at the time I could not even pronounce—trigeminal neuralgia. I wanted answers. I wanted the pain to go away. I wanted this problem fixed. Here are the possible scenarios he proposed were the cause of this condition and its accompanying horrific pain:
- Brain tumor
- Multiple sclerosis
- None of the above
He scheduled an MRI to diagnose the cause of my new affliction. In the meantime, he wrote me a prescription for oxcarbazepine (Trileptal), an anti-seizure medication that he assured would work well to control the pain.
At the pharmacy, I can remember being crunched over holding my face in pain through attacks with as much composure as I could fathom. The neurologist was right. The next day, the medication started to work and after about a week or so, the pain was mostly under control. Unfortunately, the medication came with initial side effects of nausea and double vision the first week but I was grateful the pain started to subside. After the initial side effects settled down and the pain was tolerable, I began to search for answers.
My Research on Trigeminal Neuralgia
I scoured the Web, finding all that I could about this strange new diagnosis. Everything I discovered looked dim.
I stumbled upon an online patient support website at www.livingwithfacialpain.org. It scared me initially. I read the descriptions of pain, the years suffering, the terrible medication side effects, the daunting fixes, the failed fixes. The truth is, however, that this online support group ended up being my savior in the end. The advice, recommendations, and support I received helped to get me through my journey to conquer the pain. I still visit this website today to offer my support on the other side.
"Normal" MRI Results
Two different neurologists sent me to have an MRI. In both cases, an inserted IV provided contrast during the procedure. My fear prior to my first MRI was somewhat misfounded as the experience was not awful. A movie played for my first MRI and Pandora carried me through my second.
The results read "normal" in both cases, meaning that I did not appear to have a tumor, shingles or multiple sclerosis, or any other problem. Good news but also bad news since no cause was suggested. What I did know by that point and after my extensive research is that in most cases, classic symptom TN is caused by a blood vessel or vessels compressing the trigeminal nerve. Neither radiologist and neither neurologist saw a compression.
Note: After my first MRI, I never received a call from my neurologist. Only after I contacted the office a couple of times was I told about my "normal" results. The office said that since my results were "normal" they felt no need to call me. Soon after that my neurologist "gave up on me" as my medication doses got higher. Someone on his staff told me he decided to shift my care over to a pain doctor. The lesson I learned from this is that I was essentially on my own, medically speaking, and that I had to learn all I could about this disease and take charge. I did see the pain doctor, just once. He told me he couldn't do anything for me and couldn't prescribe medicine but that I should "run to MVD surgery." More on that later.
Anti-Seizure Medications for Trigeminal Neuralgia
Anti-seizure medications are no fun. This category of drugs serves as the gold standard for treating the pain of TN along with a host of other disorders and diseases. I now live in awe of individuals who suffer with epilepsy, especially children, knowing what they go through with these medication side effects.
Two anti-seizure medications became my saviors from unfathomable pain but wrecked my quality of life. I spent four months first on Oxcarbazepine (Trileptal) and later switched to Carbamazepine XR (Tegretol).
I took Oxcarbazepine for the first four months of my treatment. My initial dose was 300mg per day. I experienced nausea and some double vision, which subsided in the first week. The medicine controlled my pain fairly well, initially. I had times that were pain free or nearly pain free. After a few weeks though, the pain began to slowly breakthrough, inching up the pain scale to the point where I needed a higher dose. My neurologist obliged and that higher dose would do the trick again for a few weeks. This cycle continued until the point that I took a total of 1500mg per day, spread out throughout the day.
As I continued to increase my doses, my side effects evolved to include many that are on the commonly experienced list below. The worst was my total lack of energy and concentration, and my inability to remember much of anything. I also experienced shakiness and toward the end of my time on this medication, I started having "episodes" that felt like I was taking an illicit drug trip. I experienced a dizzy, loopy, and an almost "out-of-body" experience where I became almost unaware of what was going on around me. This scared me. I switched neurologists at that time and my new neurologist explained that the high dose I was taking created "drug dumps" into my system and that is why I was having these frequent events. Time to switch meds.
The table below highlights only a sample of the more common and uncommon side effects patients experience on this medication.
Oxcarbazepine Side Effects
Abnormally Low Blood Pressure
Sensation of Spinning or Whirling
Abnormal Recording of Electrical Activity of the Brain
Decrease in Sharpness of Vision
Involuntary Eye Movement
Low Amount of Sodium in Blood
Toxic Effect on Brain or Spinal Cord Function
Increased Sensitivity to Sunlight
Decreases Effectiveness of Birth Control Pills
Carbamazepine XR (Tegretol)
My new neurologist (100 times better than my first neurologist) carefully transitioned me off of Oxcarbazepine and onto an extended release formula of Carbamazepine. He explained that the extended release version of this medication would help me avoid the "drug dump" symptoms I experienced. This proved true but the common side effects I experienced on Oxcarbazepine were even worse on the Carbamazepine.
My Drug Interaction with Synthroid
The medicine Synthroid controls my diagnosed hypothyroidism well. While I took Carbamazepine XR, my body went back into full symptoms of hypothyroidism as the drug interacted with my body's ability to absorb the Synthroid (confirmed by my neurologist). After my surgery, when I came off the anti-seizure medication, my thyroid numbers showed I was hypothyroid and it took almost a full year adjusting my Synthroid doses back and forth to stabilize my numbers and eliminate my symptoms.
My memory and cognitive abilities were so impaired that I could barely function. I once attempted to drive a short distance to a good friends house and had to stop the car in the middle of the trip because I could not remember how to get to her home (I'd been there hundreds of times). My family went on a week long beach vacation during that time and I have scattered memories at best, as if I took this vacation some thirty years ago. Every day was a struggle, especially remembering to take my six pills a day at regular intervals to stay on top of the pain.
Once again, I meandered through the pattern of a few good weeks of pain control followed by breakthrough pain and increased doses. By the end of my Carbamazepine journey, I was taking 1200mg each day. On top of that, I was managing some bad breakthrough pain with Vicadin. Honestly, it did not help the pain but it helped me to escape from the pain now and then when it was at its worst.
The table below highlights a small sample of the more common and infrequent side effects patients experience on this medication. Note that this mediation is a Class D drug during pregnancy.
Carbamazepine Side Effects
Low Amount of Sodium in the Blood
Involuntary Eye Movement
Reaction due to an Allergy
Syndrome of Inappropriate Antidiuretic Hormone Secretion
Toxic Epidermal Necrolysis
Increased Sensitivity to Sunlight
Decreases Effectiveness of Birth Control Pills
In my hours of research, I found the book Striking Back, written in laymen terms for TN patients. A well-respected neurosurgeon in the field of TN, Dr. Kenneth E. Casey, co-authored the book together with TN patient, George Weigel. I read it cover to cover within weeks of my diagnosis. It became my "bible" that not only educated me on my disease and all the treatments, but gave me hope and lead me on my path towards conquering this debilitating pain.
I've provided a link to the book here on Amazon. You can read a few pages online and purchase it through Amazon or you may purchase the book through The Facial Pain Association, where a portion of proceeds support TN research efforts.
Microvascular Decompression (MVD) Brain Surgery Decision
No cure exists for TN at this time, but thankfully several surgical treatments can treat or reduce TN symptoms outside of medications. Most patients seek out one of these treatments. After researching and educating myself on the disease and treatments, and visiting countless doctors, I made a huge decision. I decided to succumb to having a hole drilled in my skull so that a neurosurgeon could "fix" the problem. The surgery called Microvascular Decompression (MVD) is the only treatment that solves the root problem of nerve compression.
There are risks with this surgery, as with all surgeries. I carefully considered the risks and whether or not they outweighed the possible benefit of being pain-free. Risks included a CSF leak, hearing loss in my left ear (the side of my pain), permanent numbness, a stroke, and even death. The risks were all very small and of course there was the slightly larger risk that after going through this big surgery, I might not be happy with the results. I might still be in pain.
I pondered several "what if" scenarios:
- What if the surgery works but I lose hearing in my left ear?
- What if I suffer a surgical complication?
- What if I'm left with permanent numbness on my surgery side?
- What if the surgery is unsuccessful?
- And worst of all, what if the surgery is unsuccessful plus I lose hearing in my left ear and suffer one or more surgical complications?
I had to make sure that I would not regret my decision to have an MVD. Ultimately, I decided my biggest regret would be not taking that leap of faith to have the surgery. I was more afraid of living a life in pain on the medications than I was of the surgery and its small risk of complications.
So, a few months into this disease, I decided that microvascular decompression surgery (MVD) was my answer.
I learned that courage was not the absence of fear, but the triumph over it.
— Nelson Mandela
Find the Best Neurosurgeon
I began visiting neurosurgeons a few months into my diagnosis. I knew so much about my disease already and I was interested to learn even more about the surgical treatments. I also knew that I could not live on the medications indefinitely. This disease is progressive and at some point, the medications stop working.
I saw three neurosurgeons, all experienced with Trigeminal Neuralgia treatments and surgeries. I had very different experiences and advice with all three. I realized how important it is to get a second opinion and even a third when making medical decisions. The first two neurosurgeons I saw were local. Here is a summary of those visits.
First Neurosurgeon Visit
The doctor said he did not see anything on my MRI that looked like a blood vessel compressing my trigeminal nerve. He explained the various surgical treatments but seemed to steer me away from having an MVD surgery and instead to the Gamma Knife procedure that uses radiation to damage the nerve so that pain signals are not felt. He suggested that I drink more coffee to combat the severe fatigue I battled while on the medication. No follow-up was suggested.
Second Neurosurgeon Visit
My diagnosis was also confirmed and this doctor did spend quite a bit of time with me, explaining the disease and treatments. He said he saw something suspicious on my MRI. He said I was a good candidate for MVD surgery but suggested maybe I wait a few years, trying all the various medications first, as MVD surgery had its risks.
Third Neurosurgeon Visit
I decided to travel out-of-state to visit a neurosurgeon that was highly respected as an expert in the field of facial pain. This surgeon by far had the most experience in treating TN surgically. His diagnosis was more thorough and he provided details about the treatments that were new to me. He easily saw two compressions on my MRI and actually showed me the compressions in his office. His surgical complication statistics were lower than what the second neurosurgeon had told me. He had done this MVD surgery many more times and had learned from the father of MVD surgeries, Dr. Peter Janetta. Over the years, he has worked to perfect his surgical techniques. I had found my neurosurgeon, Dr. Ken Casey.
My Microvascular Decompression Surgery (MVD)
I knew at four months into this disease that microvascular decompression surgery (MVD) was my answer. The surgery involves moving an offending vessel or vessels off the trigeminal nerve and placing a pad or sponge to prevent the vessel or vessels from coming back in contact with the nerve. To access the nerve and vessels, a hole is drilled into the skull near the brain stem. It is the most invasive TN treatment and does not fit every patient. Fortunately for me, I was a good candidate for this surgery.
Renowned neurosurgeon Dr. Peter Janetta developed MVD surgery as a way to attack the root cause of TN pain more than four decades ago. Initially, the medical community challenged this invasive surgery for TN, especially since less invasive treatments existed. Today, many neurosurgeons believe that this type of surgery offers the best chance for long-term pain relief. It is also the only surgical treatment that goes to the root of the problem for most TN patients and does not aim to damage the nerve. This was important to me, to keep my nerve intact, so that one day, when a cure comes, my nerve will be in a healthy state.
Day One After MVD Surgery
My surgery lasted a few hours and I spent two nights in the hospital recovering. The first night was in intensive care and the second night in a regular room. I felt overjoyed when I woke up and felt no TN pain. My surgeon continued my high doses of Carbamazepine from pre-surgery in case my nerve needed some time to settle down and also because I needed to be slowly weened off that high dose. I knew my pain had left though because the weeks before surgery, I experienced progressively worse breakthrough pain. My dose was already too high to increase and I was unwilling to layer in other medications for those short weeks before surgery. I could see the light at the end of my tunnel so I soldiered through.
The first 24 hours after surgery wreaked some havoc on my body. Nausea took over non-stop and as I was not allowed any water, I dry heaved continuously. My head hurt, too, but for me, the nausea was the worst of it all. The second 24 hours of recovery was not so bad and after two nights, I was ready to leave. I spent an extra two nights in a rental facility near the hospital since I had traveled out of state and then after my surgeon checked me out and answered all my questions, we made the long drive home.
Overall, my recovery took about six weeks. I backed off prescription pain meds after the first week and after the first two weeks, I was almost back to feeling like myself but it took another month or so to get my energy back and be ready to start my life free from the horrible pain I survived.
Two Weeks After MVD Surgery
MVD Surgery Success
MVD surgery as a treatment for TN provides the greatest long-term pain relief solution for patients. Medical literature points to success rates of 85 to 95 percent and maybe as high as 98 percent initially after surgery. 1 Patients often experience immediate pain relief as I did. Pain can return after MVD surgery but often that happens soon after surgery, with about 6 percent of patients getting their pain back in the first year after surgery. Beyond that, the pain returns about 3 percent of the time in years two through four after surgery, 2 percent after five through nine years, and less than 1 percent from the 10th year forward.2 In truth, there is not much research in long-term pain relief after MVD surgery beyond 10 years. Many TN patients, however, remain pain-free after their MVD surgeries for many years beyond that. It's wonderful when those who have remained pain free after MVD stay involved in support groups. It is the best hope you can give patients living through it. I heard from one man that had an MVD 35 years ago and still lives with no pain.
My Life Now
Now in 2019, nearly seven years have passed since my diagnosis and six years since my successful MVD surgery. I am blessed that I no longer suffer from the painful symptoms of trigeminal neuralgia. I am grateful that I no longer take the medications that interfered so drastically with my day-to-day life. I thank my talented neurosurgeon, my team of doctors that saw me through many months of pain, my online TN support group, my offline support group of friends, and mostly my family, my biggest supporters and cheerleaders throughout this ordeal. I LIVE better now than I did before my diagnosis. Every day pain-free is a gift.
I believe that Trigeminal Neuralgia did not enter my life randomly. I feel a purpose and am compelled to stay involved in the lives of others who still suffer symptoms every day. Compassion and support reached out to me when I was first diagnosed, throughout my journey, and through my big surgery. Many prayers were said on my behalf and I felt them. A guiding hand held me up and drove me to find the answers and solution I did. I now pray for the other patients on their own journeys and offer support when and where I can.
Emotions surfaced as I wrote this article. That period in my life when I suffered from the pain of trigeminal neuralgia was dark and often felt hopeless. I found my light through this disease and want to give that to others. Please watch the video below focusing on the importance of finding a cure and then read on to find out how you can help.
Facial Pain Research Foundation Public Service Announcement - Tony Shaloub and Brooke Adams
Finding a Cure for Trigeminal Neuralgia
I am no longer in pain; however, I am not "cured." No cure exists for this awful condition. My MVD surgery fixed the problem of arteries compressing my nerve but did not cure me. The surgery offers me long-term pain relief—but my pain could return someday. There may be a genetic connection based on current research, so I worry that this could be passed down to my daughters or future grandchildren. Finding a cure is important for me personally and important to all those who are suffering from TN, or love someone who suffers.
There is hope. The Facial Pain Research Foundation, a not-for-profit organization, is actively working to find a cure for TN, as well as other nerve pain. An international consortium of scientists are tasked with this mission with a goal to find a cure in ten years. Resources, however, are limited.
All funding comes from donations, gifts, and fundraising for this all-volunteer organization. TN patients have stepped up to lead many local fundraising efforts. A "Race to Save Face" in Dover, Ohio, for example, recently raised $11,000 for The Facial Pain Foundation. Large matching donations from individuals or corporations have come in but much more is needed. Every donation counts.
Finding a cure is essential and so is raising awareness for this horrible disease. October 7th is the International Trigeminal Awareness Day and in the few years since its start, landmarks and buildings from around the world have lit up teal on that day to recognize TN. I have included a picture of the Indianapolis Power & Light building in this article. Please let others know what you've learned about this disease. It might help someone identify the symptoms of a loved one and get the proper care.
Trigeminal Neuralgia Resources
- The Facial Pain Association
This not-for-profit association works as an advocate for patients living with TN and related neuropathic facial pain.
- The Facial Pain Research Foundation
A division of The Facial Pain Association, this foundation is working to find a cure for TN.
- Living with Facial Pain
Provides information, support, and friendship for TN sufferers and their loved ones.
Sign the petition for the World Health Organization to add TN to its "Health Topics" list. This will expand awareness, grant access to resources, and create opportunities for funding and research. Also, you can view pictures of all the locations around the world that lit up teal on October 7th.
Search for various support groups on Facebook, including "Trigeminal Neuralgia Support" and "MVD Patient Support."
1 Weigel, George, and Kenneth F. Casey, M.D. Striking Back! The Trigeminal Neuralgia and Face Pain Handbook. 2nd ed. Gainesville, FL: Trigeminal Neuralgia Association, 2004. p.250. Print.
2 Weigel, George, and Kenneth F. Casey, M.D. Striking Back! The Trigeminal Neuralgia and Face Pain Handbook. 2nd ed. Gainesville, FL: Trigeminal Neuralgia Association, 2004. p.250. Print.
Sindou, M., J. Leston, E. Decullier, and F. Chapuis. "Microvascular Decompression for Primary Trigeminal Neuralgia: Long-term Effectiveness and Prognostic Factors in a Series of 362 Consecutive Patients with Clear-cut Neurovascular Conflicts Who Underwent Pure Decompression." PubMed US National Library of Medicine. Journal of Neurosurgery, Dec. 2007. Web.
"Common and Rare Side Effects for Trileptal Oral." WebMD. WebMD, 2015. Web. 13 Oct. 2015.
"Carbamazepine Oral : Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD." WebMD. WebMD, 2015. Web. 13 Oct. 2015.
Weigel, George, and Kenneth F. Casey, M.D. Striking Back! The Trigeminal Neuralgia and Face Pain Handbook. 2nd ed. Gainesville, FL: Trigeminal Neuralgia Association, 2004. Print.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: Where is your Neuro surgeon located, I live in Ohio?
Answer: Dr. Casey is in the Detroit, Michigan area. I highly recommend him.
Question: Have you learned if the lightning bolt pain in Trigeminal Neuralgia has been described as something that progressed from an earache or ear infection?
Answer: My TN, lightening bolt pain, never resulted from an ear infection. In fact, I’ve never had an ear infection before. I have heard of ear pain with TN though when the upper nerve branch is involved. For me, my middle and lower branch nerves were affected so my pain was from my cheek down to my lower jaw areas.
Question: I remember the exact moment my TN started, however, it was some weeks before I realized I had lost my sense of smell. 1 1/2 years passed, and I finally had my MVD with a great Neurologist. 3 weeks later, my sense of smell started to return. It is getting better every day, as I continue to get better and more pain-free every day. Ever hear of TN causing Anosmia?
Answer: Thank you for your comments and question. No, I do not know what Anosmia is but appreciate your comments on that to educate me and all. I also remember vividly my first moments with TN. So happy that your outcome from MVD has been successful.
© 2015 Marcelle Bell
Raz on October 08, 2019:
TN is a horrible thing to have , changes your life , if not treated. Mine started with oral/jaw surgery , in which dr had run into some issues with . It took longer than average recovery time , also had pain long after it was done. He put shot novacaine in supposed tooth that seemed to be causing prob. He told me , let me know if pain there after 24hrs. Well went back 2 days later , but, he never did explain other than to rule out things. It took 2 years of seeing so many dentists , and other dental professionals until last dentis, who finally gave me an answer , who told me, i hate to tell you this, but you have TN , and said last patient i had was man who committed suice due to the pain. At least i had an answer. This was in 1998, and pc wasnt what it is now. So, researched best i could , until 2003 , found online , now accessable, a then very expensive procedure , called a mvd, devoloped by Dr Peter Jannetta in pittsburgh , meaning out of my state . By this time I had gone thru the gammit of specialists , tests, and injections, rx meds , and a rhyzotomy , in which was a surgery type, put under , but awakened while under to check location of nerve and how much pain. Im sorry, this may be out of sequence as its been long time, tho unforgetable , was confusing, as i was constantly making appts , to fix, as one dr led to another. Etc. In the begining i was given vicodin 5mg , which after a time , many rx added, tegretol, neurotin , etc, but, nothing helped much, until finally given 80mg oxy er.taken 3 x a day , as that helped,but, many said opiates dont help, well, im the anomoly i guess. It was the only med that did. Big dose, so, went for mvd. Hmm, went in alleghany med center , met Dr Casey , and after many many complications came out 9 days later from icu whole time. Still hopeful, went home, hoping pain would eventually stop , but, it didnt. 3 months later had anotger surgery type, had glycol injected . Still pain. They shook their heads , they at that time nothing more other than to cut nerves with horrible possible outcomes. Hoping after all of that, that it would calm down. I stayed on high dose rx , until 2014 , then pain had finally got down to a tolerable level of jaw pain with occassional lightening bolts , yea i could deal with this. Why it took years , no idea. Now in 2019, occipital neuralgia . Now , things are better , more eveloped and most are diagnosed early therefor treated earlier. Better outcomes. I only tell my story so you can appreciate that., and the 75% then is now much less risky and treatable. For those that read from begin to end, and diagnosed with TN, i wish the best outcome. My apology for the length of this , im obviously not a writer or had help, but thank you , best of luck!
Raz on October 07, 2019:
Also had Dr Casey , back when he was learning from Dr Janetta in pittsburg .
northsider on May 04, 2019:
Mine started with a deep tooth cleaning ..have not been diagnosed yet still waiting to see Neuro .Either my grandson hit me hard on my cheek bone or the deep cleaning only on left side started symptoms. Brushing my teeth I cant eat on the left side I ate cashews the other day it started again at 5 am .Dentist gives me amox sends me to endo for root canal he says no root canal needed .Get a mouthguard did this 2 months & had another attack last night .Endo gave me prednisone .Then I wound up getting strep throat .It only hurts on my left side of my jaw upper & lower really bad its like someone cutting your gums with razerblades .Dentists suggests TMJ but TMJ doc says I need a neurologist .Only it takes 2 months to get in waiting ...Do I just tell Doc what I think I have & check those nerves or let him decide ?? My pain was so bad
Leah on April 27, 2019:
i was wondering if after surgery how the scar/head feels.I had surgery a year ago and i cannot handle that sight to be touched in any way and cannot move my head due to the pain i now feel from the surgery. sometimes the sight will swell and cause pain. now its not TN pain and not as bad but its constant. have you heard anyone complain about that?
Marcelle Bell (author) on March 24, 2019:
Thank you, Patricia. I feel blessed that this beast has stayed away for more than 5 years now and am hopeful for a lifetime without this pain again.
Patricia Scott from North Central Florida on March 10, 2019:
O my...what a journey.So glad you were proactive and sought help thru your efforts. Praying your relief will continue and that a cure will come. Angels on the way. ps
Marcelle Bell (author) on March 10, 2019:
Hi Phil - I know that sometimes it can take the nerves a few days, weeks, or even months to settle down after surgery. This is what my surgeon told me. I did have sensations after surgery for the initial weeks in my trigger areas but they faded out and did not feel like the pain I ever experienced with TN. I have had no pain since and no sensations in any of those areas now for more than 5 years since my surgery. I wish you the best and a speedy recovery.
phil on March 10, 2019:
Thank you for sharing, MVD surgery was perform on friday and now two days after, still feel the trigger around the upper teeth beneath the right side lip(mouth) left in a more confuse and disappointment state.
Marcelle Bell (author) on September 01, 2018:
Thank you for your comments, Pamela, and I'm very sorry to hear about the nerve pain you've endured with surgeries. One thing I learned while living in pain is that ALL pain is horrible, no matter the degree. It affects the quality of your life to the point where you can't live the way you are meant to.
One main goal with writing this article is the hope that members of the medical community would read this patient's perspective to help them better understand and in many cases, introduce medical workers to this rare condition. I'm happy that as a nurse, you took the time to read this. Thank you.
Pamela Oglesby from Sunny Florida on September 01, 2018:
This is such a tragic disease! I have sciatica still following 2 back surgeries, so I know nerve pain is bad. Your pain sounds much more intense than mine, and I am so glad you found a great neurosurgeon. I was a RN for many years, but I was not familiar with this condition. This excellent article has really taught me a lot about this condition.
Larry W Fish from Raleigh on April 07, 2018:
Oh Marcelle, you are right the pain from TN is the worst pain I have ever felt. At first I was getting quick stabbing shots of pain to my right eye, sometimes up to 60 or 70 times a day. My family doctor diagnosed me as soon as I saw her. I however did have extensive eye tests and nothing was found wrong with my eye. The quick pains turned to bouts of pain lasting for several minutes. They virtually covered a large part of the right side of my face. In January of this year I had 8 bouts of this terrible pain in one day. I ended up in the ER. My medication was changed, 2400 mg a day of gabapentin and 600 mg a day of oxcarbazepine. I also use a nasal spray every morning, I drink two cups a day of chamomile tea, and I massage the right side of my face many times every day. I have had no pain for 13 weeks now. I fear that it will return, it is a question of when.
Gintare on February 05, 2018:
I have this operation before 3 months. It is not working for me. It is horrible to live with this pain.
Marcelle Bell (author) on July 07, 2017:
So sorry to hear this, Jennifer. I do know that MVD is not a cure although am hopeful that it will keep the pain away for as long as possible and possibly for the rest of my days. I do hope that the research that is being done will find solutions and a cure for all TN patients.
Jennifer stone on July 04, 2017:
Thank you for this info. It helped me so much. Just to know someone that has been thought this same thing I have. I had MVD surgery 13 years ago. My pain has came back. So I had the Grammy knife surgery in November. I still have pain but not like Electric shock I had. My face has went numb on the left side and my left ear hurts. My left side teeth are numb also. I am on Prednisones now in hopes it calms my nerve so maybe it won't hurt. I will have to live with the numbness and maybe this pain if the Prednisones don't work.
Shirley D on May 09, 2017:
I have a similar story except mine started shortly after a root canal. That was 21 years ago. I waited & medicated 7 years before I dared to have MVD. Dr Jeffery Brown performed mine. I went to see Dr Kenneth Casey & scheduled a "redo" in 2015. But my insurance wouldn't authorize it b/c my MRI read "normal". I'm learning this happens often. How did you handle your insurance coverage from out of state?
Frances Hutchins on May 01, 2017:
I can relate to everything you've written, I almost feel you've written "my story" long may we continue to have a more pain free life. My surgery was just over a year ago.
jennnl on March 06, 2017:
Thank you for sharing your experience! Your description is so dead-on to how TN feels. My TN has become more recurrent, and relentless, recently due to my MS and chronic migraines. Thank you for sharing you experience and personal insight, as it helps others feel less alone with their TN. I pray your TN never returns.
Anne on March 02, 2017:
I cried as I read your closing words. My husband just recently was diagnosed with the debilitating disease. We are in the midst of researching and about to embark on a journey to help his pain. I don't think k the drug treatments will work for him as he has Hashimotos and is on synthroid. He suffers from this as well as he has a rare form of painful hashimotos. When I read your comment that you thyroid became out of range and took over a year to get on track, I know that he can't suffer from both debilitating diseases. Our poor son will suffer too as he watches I'm confusion when my husband gets an attack (he's 22 months old). I don't know what lies ahead of us but I will make sure we have the best neuro surgeon here in Vancouver BC to perform the MVD surgery as I know in my heart this is the only route to take. We will join other networks of other TN sufferers and arm ourselves with facts and hope. Bless you and thank you for sharing your story as it gives us a glimmer of hope.
Marcelle Bell (author) on March 28, 2016:
I'm so sorry to hear this, Murray. I know that MVD surgery does not work for everyone. I'm hoping and praying for a cure to come sooner than later to help us all.
Murray Young on March 27, 2016:
I have failed MVD - was ok for 18 months after Op. But my eyes and tongue now affected aswell as jaw and teeth, have gone back to Pregabaline, lower dosage than before but it's worsening, I am devastated to be waiting for the return of the Monster that consumed me ...
Grace on November 18, 2015:
Thank you so much for sharing your story. I recently got diagnosed with TN. I had an MRI/MRA with and without contrast two weeks ago and last week my neurologist called me with the results and briefly mentioned the two procedures (MVD and Gamma Knife). My right superior cerebellar artery is tortuous and is noted to contact the right seventh cranial nerve superomedially at the root entry zone. This is a lot to take in and I don't know what all this means. Your story is helping me understand TN a bit more. All I know is that I'm really scared. My pain comes and goes. I was prescribed Carbamazepine which I haven't started taking. I now have an appointment with a neurosurgeon. I will look into buying the book. I am so happy to hear that you are doing well. Thanks again :)
Irene HR Cooper on November 16, 2015:
Thanks for sharing your "story". I've had MS for 20 years but TN just struck me again & I am at the top level of my pain meds to control it (taken 5 times a day) and know I will have to have surgery if I break through these meds one day! This is the most frightening & painful "thing" I have ever experienced!!!! I will order the book you mentioned on your Website. Thank you so much for your story!
Irene HR Cooper
Olga on October 30, 2015:
Wow I feel like I was reading my own story great article!
Marcelle Bell (author) on October 20, 2015:
Thank you Betty, Elvira and Pstraubie for your kind comments. So happy that the surgery worked for you Elvira even though it is not 100%. I know that sometimes happens and even a reduction in this pain is a blessing. I hope that you continue at the level you are at or even better, improve. So sorry to hear that you have family members with TN, Pstraubie. Thank you too for sharing this article. Let's all hope for a cure even sooner than 10 years!
Patricia Scott from North Central Florida on October 17, 2015:
Relentless pain that tortures our bodies and minds is the worst.
There are those in my family who struggle with this kind of pain so reading your article reiterated what I know they feel.
This is such an informative and hope-filled article. One of the most important parts is that you remind us to be PROACTIVE. Doctors do not have all of the answers and do not know how to solve every medical condition. So wisely you researched...good for you.
We have done the same in our family and are never sorry when we do.
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Marcelle Bell (author) on October 16, 2015:
Thank you, Dixie! Dr. Ben Carson . . how wonderful! So happy for you, Dixie, that you are also out of pain. You helped me so much when I was on my surgery journey. We've both gotten past the first couple of years after surgery - yay! My main goal with this story was to offer hope and strength to others and also to raise awareness.
Marcelle Bell (author) on October 16, 2015:
Thank you all for your kind comments. Annie - My surgeon was Dr. Ken Casey (I've added it to the article). He was fantastic! Lori Ann - I have said a prayer for your sister. I'm sure she will come through surgery just fine. The recovery takes some time but she'll be feeling back to normal before you know it. Let's work and hope for a cure for both TN and SUNCT!
Elvira Buck on October 16, 2015:
Thank you so much for your story. I relate to everything you have gone through. I too suffer with TN. I have for over 5 yes. Early into my diagnosis I also had the MVD. Until then I was on 1200 mgs of carbotrol daily. The surgery I believed worked for me. But not 100%. I still take carbotrol. Just in lower dosages. 600 mgs daily. I am able to live a somewhat normal life. I never had very many break through pains before. Now I never do. I am able to work and drive and play with my grandchildren. The cold or wind does not bother me. But I do try to rest and live a stress free/ drama free life. If that is possible. I am glad I had the surgery. I don't know how it would of been otherwise. If the pain would of got worse or if I would of been to scared to try the surgery. Only God knows. I pray you live a pain free life. As for everyone else who suffers this. This is one illness I would not even wish on my worst enemy. Not that I have any. It's just that I don't wish this on any one. God Bless you and good health. ❤️
Betty Sheppard on October 15, 2015:
thank you for sharing.
Dixie Thompson on October 15, 2015:
I remember so well the days of darkness I experienced with TN 1. . I, like you, did a vast amount of research and read every book I could get, including STRIKING BACK. I found the "living with TN" site as well & found so much support and knowledge. My research and my God led me to Dr.Ben Carson @ Johns Hopkins. I am 3 years post MVD and have my life back. Thank you for your story and I pray it will give others hope and strength.
Lori Ann on October 15, 2015:
Your story gives me hope for my sister. She has been suffering with SUNCT for over 3 years now and she is having an MVD tomorrow. It is heartbreaking and painful to watch someone you love suffer. Your story sounds very much like my sister's pain. She has been on more meds than I can name and tried many alternative treatments with no real help. I am praying she too will be pain free. I am so happy you found your answer quickly. Prayers for all suffering with TN/SUNCT to have a pain free day.
Annie on October 15, 2015:
Wonderfully put into words for many who suffer this frustrating disease. I would love to know what surgeon you finally settled on. Like so many I'm hampered by my health insurance, but sometimes there are choices one has to make. Good luck to you always.
Arifa on October 15, 2015:
Nice Article and glade to know you are pain free now a days hope this TN will never comeback again in ur life. My situation is same like you I have TN since last three years. I was lucky in my First MRI found the compression but doctor give me medicine and always change it dew to side affects, since last whole year I am using Oxcarbazepine 300mg initial dosage per day but I am reached still 600mg and doc said first increase ur dosage till last limit after that we will decide for MVD,........ur right after TN life is changed.
Marcelle Bell (author) on October 14, 2015:
Oh my, Flourish. I cannot imagine battling both MS and TN. You are a brave one for sure. I'm so sorry too that there isn't a solution for you like there was for me. One day though, there will be a cure for MS and TN. Thanks for your comments and for your share!
FlourishAnyway from USA on October 14, 2015:
Your description of what it feels like is dead on accurate, Having suffered from it myself (associated with my MS) I can say the pain is face clawing and brutal. I took Topamax and am still on it. I occasionally have light electrical shock sensations also in the left side if my face that light me up. I had a pain block in the base of my brain a few years ago that lessened symptoms. You are brave and resilient for the path you have chosen. And I am glad you have written about your journey. When I get back to my PC I will share and G+ this.
Marcelle Bell (author) on October 14, 2015:
Thank you for reading, Carolyn, and for your kind comments. All surgery is no fun and requires quite a bit of courage and stamina. So glad that you pulled through it!
Carolyn Fields from South Dakota, USA on October 14, 2015:
You are a very brave woman. I look back on my hip replacement surgery differently after reading your account. It seems almost insignificant in comparison. So glad you found relief.