Trigeminal Neuralgia, meditation, opioid tapering, experiences with HCPs

Evie speaks with Niki, a person who has been living with chronic facial pain due to trigeminal neuralgia since 2002.

Niki has been through unsuccessful surgical management including three microvascular decompression (MVD) procedures and motor cortex stimulation. She attended a pain management programme (PMP) in 2005 which she didn’t feel was particularly helpful for her condition at that time.

A major change came in 2018 when Niki discovered the “curable” app and began meditating. She feels that this has been the most helpful approach for her and she experienced significant improvements in her quality of life after starting her meditation practice.

After her success with meditation, she decided to try coming off her long-term opioid pain medication – fentanyl patches and tablets. She initially tapered these herself without medical guidance or support over a period of ten days. This resulted in a very difficult period of serious withdrawal effects. Lacking support or guidance, she started taking almost her original dose of fentanyl again after about 6 weeks without the medication. At the same time, she had changed from tricyclic medication to another.

Following this initial very negative experience with too-rapid fentanyl and TCA tapering, she continued to use meditation to help her cope and attain some stability again. She then decided to try tapering her medications again, this time with medical and psychological support. Just prior to covid, she had been attending a clinic for help with tapering under the guidance of a nurse, pharmacist and ACT (acceptance and commitment therapy) psychologist. Unfortunately she didn’t experience a positive therapeutic rapport with her psychologist and feels that the psychological support was therefore not particularly helpful.

During the lockdown period, Niki continued to taper her medications according to her individually-tailored, slow schedule and is now managing on a low dose via patch only, having successfully stopped her tablets. It has been a very difficult struggle and a “rocky path”, but she feels she is now making progress and on the right track. Her story is fascinating, saddening, bewildering and uplifting in many ways.

We hope that hearing her story will perhaps help people who are experiencing similar challenges with chronic neuropathic pain or opioid use. We also hope that healthcare professionals will find Niki’s story valuable in helping them to reflect on their own practice.