One day, my husband rested his hand on top of my head as he walked by me. The pain was so great felt by me that I cried out, to his surprise, as he really had meant it as an expression of caring. From that day forward the pain radiated down the side of my face and I could not tolerate wind or even a light scarf touching me. It would come and go but gradually became worse and required analgesics. Fortunately my doctor was able to diagnose it and I began a light dose of Gabapentin. Gradually the pain worsened to the point that I could only get some relief from 2700 mgs ( 9 pills a day). My doctor had referred me to Dr. Honey, a very busy Neurosurgeon, and also a TN support group in Surrey. It was a small group and Charlee told my husband and I about a Dr. Fleetwood in Victoria. She had heard from others that he was a very good neurosurgeon. He performed my Micro- Vascular Decompression after diagnosis was ascertained. I was gradually taken off my medications and I am happy to say I have been pain free since my surgery in 2019. I only hope that iI can help even one person, I will have done something very worthwhile. Sincerely, Bev Tate

In the late afternoon of Friday 13 March 2009 I was involved in a remote workplace rollover snowmobile accident on Lake Temagami, Ontario. The impact of the left side of my helmet with the ice left me unconscious and alone (without a quality helmet I would not have survived), it was -20*c and approach night time. It was dusk when I started to regain conscious and very slowly I was able regain function of my limbs and access the still running snowmobile. I carefully made my it to my work vehicle 5 kms away and drove the 80 kms back to home. The pain in my head and face was constant and got worse over the next 2 days, I attended the local hospital where it was determined I had a concussion. The symptoms of my concussion slowly eased over the next 3 months, but the pain in the left side of my face never did. There is a constant crushing type pain in my scalp, forehead, eye socket, nose, cheek, jaw and even my teeth and tongue, but only on the left side. There are also quick blasts of lightening bolt type pain across my left eye from the outside edge inward toward my nose, these are brief but brutal!

Over the next 5 years I saw many different doctors and it took a long time to diagnose that I had Trigeminal Neuropathy, very similar symptoms to Atypical Trigeminal Neuralgia, but caused by physical damage to the trigeminal nerve. I was prescribed Gabapentin, then Lyrica, then Amitriptyline all with limited improvement and fatiguing side effects. I saw a pain clinic specialist in Toronto who prescribed strong narcotics, but is seemed that after a few months I would repeatedly need an increase in the dosage. In the fall of 2014 for an unknown reason my symptoms greatly intensified and I searched for relief in earnest. By chance I met a chiropractor at my next pain clinic appointment who prescribed I see a physiotherapist for manual therapy and deep dry needling. I was very lucky to find a physiotherapist who could provide these services in my small community and I started treatment immediately. Over the past 5 years I have had manual therapy or dry needling at least once a week, and if I miss a couple weeks my symptoms gradually worsen. Manual therapy involves traction on my neck, massage of my neck and shoulders, pin-point laser treatment on my face and therapeutic ultrasound (this feels amazing, makes the pain melt away). Dry Needle therapy involves pushing a long thin needle deep into the acupuncture points of the face, neck and shoulders; it really hurts to have it done, but does release the tension in the muscles and I do feel better the next day and onward.

Another workplace concussion in 2015 was much worse than my previous accident. Resulting from this accident I saw an exceptional Head Injury Specialist at the Toronto Rehabilitation Institute who took me off the narcotics and prescribed me Tegretol (Carbamazepine), it has been very effective, especially at controlling the electric shock type of pain. A new Pain Clinic Specialist also prescribed me Cymbalta which assists in reducing the pain level and improving my overall mood of confronting this condition every day. I have also had 2 deep injections into the trigeminal nerve itself, these are very painful to have done without anesthesia, but it is only a 90 second procedure. I found these injections to be somewhat effective for me, more so along my left jaw, upper lip, teeth and tongue; the effect is wearing off now and I will have these injections done again soon. Tylenol T3’s and a lotion compound of lidocaine/gabapentin/amitriptyline is utilized on particularly bad pain days.

Over the years I have found that my Trigeminal Neuropathy pain is also influenced by outside sources mainly; stress, fatigue, wind and temperature extremes. I included Mindfulness Training in my treatment and found it effective at reducing the pain, unfortunately I usually procrastinate until my pain is severe before I take the time to utilise the techniques of rest and meditation.

I searched for years to try to find the right doctor, medication or treatment to eliminate the constant pain in my face; I think that after a decade I accepted that I can only manage the symptoms and that I will have this condition for life. Throughout this adventure I have had to deal with many medical professionals and organizations. My injury was workplace related, and I found my employer and the Ontario Workplace Safety Insurance Board to be excellent to deal with and very accommodating. The doctors and specialists who treated me always had my best interest in mind and after a proper diagnosis my specific treatment plan has been much more effective. My family and friends have become used to me having this condition and I am most thankful that they provide me the opportunity to step away from situations when I need 20 minutes to rest and turn the pain level down.

Living in an isolated location I regret that I have never had the opportunity to meet with another person with TN/ATN. I keep up-to-date with treatment information online through CaTNA and an email group I am part of, but hope someday to attend a TN/ATN group session in person.

Thank you for reading about my long journey with Trigeminal Neuropathy, maybe the treatments that have been effective for me, can work for you also.