Some of our Warriors
President & Founder of ONF
Just because you can't see it doesn't mean the pain isn't real....
Prior to a collision I had in a softball game at the age of 13, I had never experienced a headache. I have now dealt with head pain from Occipital Neuralgia (ON) for six years as a direct result of the concussion/whiplash injury. Originally, I was told I would recover in 3 days, then 3 weeks, then 3 months. Fast forward 6 years later and I still have not fully recovered. My journey has taken me to over 35 specialists, 7 states, numerous medications, injections, therapies, and multiple surgeries. I was unable to participate in normal teenage activities and was on home instruction for most of my high school years. The biggest frustration was the delay in diagnosis. Even after receiving a diagnosis, I haven't found many treatments that provide long lasting relief. I feel that most doctors didn't take my symptoms seriously because of my age. Since nothing showed on imaging, doctors believed nothing was wrong. Over the years, I have felt very alone, misunderstood, and wondered if I would ever be able to have a life without pain. Through social media, I have met other people who also never fully recovered from their concussions and now suffer from ON. This led to the desire to create a nonprofit organization, to make a community of support, to raise awareness in schools and the medical community, and to help raise funds for much needed research in finding a long lasting treatment for this debilitating condition.
It has made me stop, re-evaluate my life, and start again without taking anything for granted...
Toni went 18 months not knowing why she was suffering. Being a classic headache sufferer, most doctors told her that was what she was experiencing and prescribed her countless medications. But Toni knew this pain was very different than the headaches she's had in the past. It wasn't until she was sent to a pain management doctor that he performed a diagnostic nerve block revealing her ON.
She received Radio Frequency Ablation (RFA) by a neurosurgeon which cut her pain symptoms in half. Unfortunately, this relief was only temporary and requires additional treatment at 6 month intervals. Her daily pain consists of 24/7 neck pain, bilateral burning pain in the occiptial area, bilateral burning shooting pains that travel through her head to her eyes, temples, and sinus area. She described it as having her head in a hot iron vice, all of the time. More recently her pain traveled to her jaw. Toni’s journey pushed her to return to the health field, where she is currently studying chronic pain. She has learned never to take anything for granted.
Talk to people around you, don't let the pain isolate you from the world...
At the age of 7, Guillame felt what seemed like an ice pick pierce through his skull, behind his left eye. It wasn’t until he was 17 that the headaches became constant. Guillame has tried all the usual treatments including physical therapy, chiropractor, massage therapy, acupuncture, etc. He even had his wisdom teeth removed in hopes of relieving the pressure in his head. Guillame finally found relief in March 2020 when he underwent the Reed Procedure at Reed Migraine in Texas. They implanted a nerve stimulator, with 2 leads placed in his forehead and 2 leads placed in the back of his head, occipital area, and a battery in his chest. He no longer has pain everyday and when he does get head pain, he’s able to manage it by changing the settings on his device. It’s not perfect, but is very helpful. His advice is to never let this condition isolate you from the world. As lonely as it gets, you have to keep pushing.
If He brings you to it, He'll see you through it...
Donna has suffered from head pain for 27 years. She had multiple concussions as a teenager. Donna was finally diagnosed with Occipital Neuralgia after 26 years. When she gets nerve blocks she has some relief for about 2-3 weeks. The nerve blocks are helping her function, but she's not anywhere near pain free yet. Donna recently tried epidural facet joint injections, but unfortunately did not receive any relief. Like most of us she has tried many medications with little to no relief. Her pain is primarily on the right side of her head and travels from the back of her head to her right eye. Donna finds faith in knowing that "If He bring's you to it, He'll see you through it."
Keep fighting and keep advocating for yourself!
Regen is 22 and was recently diagnosed with Occipital Neuralgia after sustaining an injury in the gym in 2019. Along with ON, she has been diagnosed with Visual Snow Syndrome and cervical subluxation at C1-C2. A mix of injections and medications has made her pain more manageable. Her head pain is constant and she also experiences pain behind her ears, light/noise sensitivity, blurred vision, nausea, fatigue, etc. Regen tries to turn her pain into something positive by making the best out of what she’s been through. She notes that one of the most important things she’s done was advocate for herself and find the best team of doctors possible. And as hard as it gets Regen is determined to “keep fighting!”
Always remind yourself that you can do it, you can get through another day...
Dee has had Occipital Neuralgia for 4 years. She suffered a concussion at work and lost consciousness. She was diagnosed with a concussion and her doctors told her that headaches, even 2 years after the accident, were normal. After a couple of years the pain started to improve, until one day she wasn’t able to focus. She saw a neurologist who was familiar with ON and he prescribed medication and gave her steroid injections, which confirmed the ON diagnosis.
Medications haven't helped Dee so she has resorted to CBD oils and ointments. It doesn't take the pain away, but she doesn't have to deal with the side effects of headache medications. Her pain usually starts in her neck and moves to her forehead. The head pain is constant and sometimes feels like tingling and sometimes feels like stabbing. Dee has noticed that warmer weather helps her have better days. Her advice is even though the pain is very real, to keep going. As hard as it gets, you need to remind yourself that you can do it, you can get through another day!