On February 17, 2026, members of UNC-Chapel Hill’s Health and Humanities: An Interdisciplinary Venue for Exploration (HHIVE) Lab had the opportunity to speak with singer-songwriter Liz Lokre, professionally known as LOKRE, about her experience with Ramsay Hunt Syndrome. In this patient story, we’ll highlight Liz's experience with RHS, focusing on her diagnosis, the mental health impacts, and how she’s coped during the recovery process.

The experience Liz Lokre describes as the greatest test of her strength began with sudden, intense “icepick-like” pain in her head. She told us that this interview felt especially meaningful because it took place exactly three years after she first started experiencing symptoms. What began as this sudden pain quickly turned into a confusing and frightening medical journey. She initially went to walk-in clinics and, eventually, to the emergency room, where her symptoms were misdiagnosed and treated only as a pain issue. Because of this delay, she did not receive an immediate diagnosis of Ramsay Hunt Syndrome (RHS), which made an already overwhelming situation even more stressful.

In addition to the physical symptoms, Liz spoke honestly about the mental health challenges she faced. She described feeling depressed during the height of her illness and shared how exhausting it was to constantly advocate for herself within the healthcare system. At the same time, she emphasized how important mental health support was in her recovery. Friends, community, and reframing her experience in a more hopeful way all played a major role in helping her move forward. Liz’s story highlights not only the medical realities of Ramsay Hunt Syndrome but also the emotional strength and resilience it takes to navigate such a life-changing diagnosis.

The journey to getting diagnosed with RHS was tricky, uncertain, and left Liz with more questions than answers, at least initially. Liz was first misdiagnosed with a temporomandibular joints disorder, commonly known as TMJ, and then with trigeminal neuralgia at walk-in clinics before presenting to the emergency room (ER) with persistent pain and shingles on her ear. The day after her ER visit, she began to experience facial paralysis. She recalled, “I woke up, and I couldn't feel my tongue on one side, and I recognized that feeling from when the onset of Bell's palsy happened,” something she’d had years prior. She noted that the first line of treatment focused primarily on pain management but also included other treatments. She was given strong acetaminophen and gabapentin for pain and, once at the hospital, valacyclovir to help treat the shingles. In addition, she was prescribed steroids to help her body overcome the paralysis, which luckily turned out to be a helpful line of treatment for RHS before the doctors knew she had it. Liz had to wait several months before finally getting treated for RHS.

Liz talked about how frustrating it was that there wasn’t a “magic wand” to speed up the healing process because she was willing to try anything that might fast-track her recovery. For example, she had acupuncture treatments and tried all the facial exercises she could find online, but the main anecdotal advice she received was to “give it time.” Through telehealth appointments in both Canada, where she is from, and the US, Liz met with several neurologists, each with different treatment approaches. As she searched for care outside Canada, Liz found a doctor who worked best for her and who offered in-person visits, as telehealth was not ideal. Liz expressed gratitude for the compassionate care she eventually received, especially from providers who had personal experience with facial palsy and could empathize with what she was going through. Her RHS treatment included steroids and antivirals, as well as the acupuncture and facial exercises she incorporated. Ultimately, Liz feels she regained about 75% of the motion on the affected side of her face.

Liz has learned to accept and embrace her new life with RHS with time, but it has been far from easy. It has required a great deal of acceptance and inner work on her part, including practices such as affirmations and positive self-talk. During the initial period of figuring out what was going on, Liz relied on her sister’s research efforts, as the first doctors she saw were not trained to diagnose RHS. Liz shared that it was easy to feel like a number during this period. Being in a public-facing career, it was challenging for her to embrace her appearance after facial paralysis. While her face has gradually recovered, Liz still notices ways she looks different from before RHS, even when the differences are not immediately noticeable to others. Despite these challenges, Liz has been determined to keep up her career, and she has become a voice of hope and resilience. Liz has prioritized staying positive and making the most of her life with RHS. Liz noted many ways that she has grown through this experience, some of them being what she has learned about the realities of pain and her own strength.