Surviving the Suicide Disease: Trigeminal Neuralgia
By Rebecca Page
As told to Cliff Williams
Edited by Cliff Williams from a recorded and transcribed conversation with Rebecca on January 30, 2024. She has been battling both multiple sclerosis and trigeminal neuralgia since early 2020. Trigeminal neuralgia is a rare nerve disease that causes sudden episodes of severe facial pain.* Rebecca was fifty-seven when we talked. She lives in Bartlesville, Oklahoma.
The Diagnosis
“It’s called the suicide disease,” Rebecca said, “because as the pain increases, more pain medications are prescribed, which causes dizziness, drowsiness, loss of balance, and very negative, often suicidal, thoughts. I had acute pain, large amounts of pain medications, and suicidal impulses, but am glad I did not succumb to those impulses.
“For ten years my legs had been getting numb, my balance had worsened, and I had experienced unusual fatigue when it got hot. Then in early 2020, I began experiencing other strange things. My right arm occasionally went numb, then seized up. I had episodes of pain on the right side of my face, and sometimes it felt as though it was being squeezed.
“A neighbor urged me to call my doctor because she thought I might be having stroke symptoms. So during the first week of March 2020, I tried calling the neurologist I had visited six months earlier, but couldn’t get through. Finally, on the Friday of that week, I did get through, and the neurologist told me to get to the nearest hospital right away for tests.
“Despite the fact that things were shutting down because of the onset of Covid-19, the hospital staff listened to me and ran the needed tests. The doctors diagnosed me with multiple sclerosis and trigeminal neuralgia. As hard as it was to hear that I had these, it was actually a relief to have names for what I had been experiencing. I was super grateful to the hospital people for working on my case amidst all the Covid activity.”
The Nightmare Begins
For two and a half years after having the hospital tests in 2020, Rebecca had trigeminal nerve pain in her right jaw. “But it was not severe. That changed in September of 2022. The pain became more like an electric shock than a tingling. It started at my right cheekbone and shot down my face. It started getting really bad in October and November. The day after Thanksgiving, I had to go to the emergency room, where I was given steroids for the pain intravenously. The following week I ended up in the emergency room four more times.
“In December I went to Tulsa, Oklahoma, to see a new doctor, who said she could give me an injection every month for $50.00 a month. When the doctor’s assistant wanted me to sign forms, I said, “Let me think about it.” I couldn’t afford that amount.
“In January of 2023 I went to an acupuncturist. It didn’t help, although the acupuncturist was super kind.
“In February the pain ramped up, and the pain meds too, which magnified the side effects—dizziness, drowsiness, loss of balance, and mood swings.
“My multiple sclerosis had also been getting worse. My left leg “dropped,” which means that I was not able to lift it as well, and that made it more difficult to walk without falling. On February 8, after much research and the generosity of friends, I picked up an electronic L300 leg device. I got it programmed in the middle of March, which helped me raise my left leg so that I could walk better.
“In March the facial pain from the trigeminal neuralgia became unbearable. It shot up to the top of my head and down through my lips and the right side of my jaw. I couldn’t brush my teeth, eat anything, or even talk or laugh without pain. I got horrible negative thoughts. And I made more emergency room visits.
“When I went to the emergency room on April 1, my new neurologist got concerned and admitted me to the hospital. The next day an MRI and an EKG showed that a large blood vessel was crushing the trigeminal nerve on the right side of my face.
“The neurologist wanted me to see a surgeon. After I got out of the hospital, I did and got an appointment for surgery for May 11. But the neurologist was afraid that I was getting poisoned by all the medicine I was taking. So he urged the surgeon to move the date up, which he did, by three weeks, to April 26. I was elated.
“During all this time, I had four or five major falls, which got me back to the emergency room each time. One of the falls was onto my tailbone. On April 16, I hit my head and jaw hard on a desk. The next day I experienced the worst facial pain ever, at level ten, and the day after that I had a very bad fall onto my right hip and arm. I had to be taken to the emergency room by ambulance for that. My hip turned purple with hematoma, which occurs when an injury causes blood to pool under the skin.
“On April 19, I was admitted to the hospital in the city where I live, then transferred to the hospital in Tulsa the next day, where I stayed until my surgery for trigeminal neuralgia six days later, on April 26, 2023.
“Also, as I said, in March I had really strong negative thoughts. During my fifty-seven years, I have never been suicidal or even thought of suicide. But when I was on eight different medications, I got so depressed one time that I told my therapist I just wanted the pain to be over. I wanted everything to stop because it was so horrendous. I didn’t want to do anything.
“That was extremely hard to deal with because it was not my personality to give up. Even though I had been having symptoms of multiple sclerosis, I took care of my elderly parents for ten long years.”
After Surgery
The surgery Rebecca had, microvascular decompression, was said to be the most likely to get rid of the pain and to prevent it from recurring. “The surgeon made an incision behind my right ear, drilled a small hole in the skull, and moved the blood vessel that was compressing the trigeminal nerve. The surgeon then put padding between the blood vessel and the nerve.
“My facial pain left immediately after the surgery. Six days later I was transported by ambulance to the hospital in Bartlesville for inpatient rehabilitation. I had been in bed for some weeks, so I needed physical therapy to help me walk again. I also had to have speech therapy. And I had to recover from all the medications I had been taking.**
“While I was in rehab, I had several meltdowns—I sobbed and sobbed because I couldn’t remember where I was from or what my family members’ names were. One time when I was sobbing, the doctor put his arm around me and said, ‘Oh, Rebecca. It’s almost like you had a little stroke with everything you’ve gone through—the medications, the falls, the surgery.’ Then he said, ‘Just so you know, it’s going to take some time.’ I never had a doctor comfort me like that.
“I spent more than two weeks in rehab and was discharged on the morning of May 18. I was immediately readmitted so that I could get an infusion of Ocrevus for my multiple sclerosis. At the end of the day, I was taken to a friend’s house in Bartlesville. It has a wheelchair ramp, which I needed because I had to use a rolling walker or a cane when I walked.
“Unfortunately, surgery for trigeminal neuralgia is not always a hundred percent successful. One morning six months later facial pain struck again as I was eating breakfast. I wanted to whip my cereal bowl at the wall, cereal and all. I sobbed and sobbed. ‘No way can this be happening again.’
“It was not nearly as severe as it was at its worst. My neurologist gave me pain medication, at first to be used as needed, then a double dose twice a day. That is what I am taking now, nine months after the surgery. The pain can be at zero, then suddenly run through my cheek and shoot up to level three. If it were to go up to eight out of ten, I would have to go back to the emergency room. Fortunately, I have had to do that only once since having surgery.
“I also have had to deal with continuing pain from my falls. I had several fractures along my spine from one of my falls, and in January, 2024, I had a kyphoplasty to help with that.*** I also got a steroid shot in February, two weeks ago.
“In spite of everything, I was good enough to return to my home in Illinois last year during August and September to celebrate my mom’s ninety-fourth birthday and to see my family and friends. I was also able to resume driving some, though I have had to be careful because my pain medications make me tired.”
What Kept Me Going
A number of things kept Rebecca going when she was in the midst of extreme pain. “The friends with whom I was living took care of me in the hospital. They helped me get to the bathroom. They prayed with me. The whole church where I and my friends went prayed for me.
“I can’t afford private insurance, so I am on Medicaid, which is called SoonerCare in Oklahoma. Without it, I would have been lost. It has paid for all of my appointments and procedures from day one, some of which were thousands of dollars. Every time I got a bill or a statement, I started sobbing, knowing it would be taken care of.
“I think gratitude has also kept me going. At the follow-up appointments with the neurologist and the surgeon during the months after my surgery, they asked me, ‘How are you?’ I said, ‘I’m still here, and I’m getting my life back.’ I took their hands and bawled. I hugged them and said, ‘Thank you. Thank you.’ It is the same with all the other healthcare people at the hospital—the nurses, the techs, the paramedics, even the cleaning people. They are heroes in my mind. So are the people in the church I go to, who have done so much for me, especially the friend with whom I am living.****
“Every day I write a gratitude list, everything I am grateful for that day, the fact that I’m not in a wheelchair, that I have a place to stay, that I’m still alive. I’m literally stunned that I’m still here.
“Also, I am a God survivor. My faith has been a central part of my life since I was young, and it sustained me through even the level ten pain when all I wanted was to give up.”
Notes
* "Trigeminal neuralgia (try-JEM-ih-nul nu-RAL-juh) is a condition that causes intense pain similar to an electric shock on one side of the face. It affects the trigeminal nerve, which carries signals from the face to the brain. Even light touch from brushing your teeth or putting on makeup may trigger a jolt of pain. Trigeminal neuralgia can be long-lasting. It’s known as a chronic pain condition.” “Trigeminal Neuralgia: Symptoms and Causes,” Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#
** There were eight medications, some in pills and some given intravenously: carbemezapine, prednisone, pregabalin, lyrica, solomedrol, extended phenytoin, oxycarbemezepine, and ambiom.
*** “Kyphoplasty is a minimally invasive procedure to treat compression fractures in your spine.” “Kyphoplasty,” Cleveland Clinic: https://my.clevelandclinic.org/health/procedures/kyphoplasty
**** I am grateful to Velma Powell for allowing me to stay with her until a bed is found at a nearby assisted living facility; Cyndi and Joe; Fran and Chuck; the pastor and people at the Bible Church of Bartlesville, Oklahoma; Dr. Tyler Auschwitz, my surgeon in Tulsa; Dr. Jason King, my neurologist; Lisa Hoyt, my therapist; all my friends from Libertyville, Illinois, and Bartlesville, Oklahoma; the nurse who suggested I tell this story; and our gracious and loving God above. All of these have played a role in saving my life.
© 2024 by Cliff Williams