A Rare Chronic Pain Syndrome – and People Who Fight It

A Rare Chronic Pain Syndrome - and People Who Fight It

By Lyn Worthington.

Occipital neuralgia, or ON, is often misdiagnosed at first. Most commonly as tension headaches or migraines, leading to unsuccessful treatment attempts. It can be caused by Head & Neck injury that has damaged or trapped the nerves and sometimes the cause is unknown. Occipital neuralgia is characterized by severe pain that begins in the upper neck and back of the head. This pain is typically one-sided, although it can be on both sides if both occipital nerves have been affected.

Additionally, the pain may radiate forward toward the eye as it follows the path of the occipital nerve(s). Individuals may notice blurred vision as the pain radiates near or behind the eye. The pain is commonly described as sharp, shooting, zapping, an electric shock, or stabbing. The bouts of pain are rarely consistent, but can occur frequently depending on the damage to the nerves. The amount of time the pain lasts typically varies each time the symptom appears; it may last a few seconds or be almost continuous. Occipital neuralgia can last for hours or for days and for some 24/7. Symptoms vary for each individual and whilst pain is the most common symptom, suffers can also experience back and shoulder pain, slurred speech, loss of balance, hearing difficulties, difficulty with coordination and sensitivity to light, especially when headaches occur.

ON is similar to trigeminal neuralgia, or TN, the so called ‘suicide disease’ because of the intense pain, higher rates of suicidal ideation in patients and links to higher rates of depression, anxiety, and sleep disorders. Whilst it is not classed as a disability many sufferers are disabled. They are unable to complete simple day to day tasks, drive, sleep or work as examples.

Occipital Neuralgia is not curable. There are treatments, medications and surgery, that can assist manage the symptoms in some, however many of those don’t always work. Many of these treatments have only been found in the last few years and haven’t been trialed and tested substantially for ON.

We need more research into better medications to help manage chronic nerve pain. We also need better access to support as many are without specialists to help them, and better understanding of the pain and pain management strategies as it is so unknown.

This was written on behalf of all suffers in ON Group to help raise Awareness.

For Support:  Occipital Neuralgia Support Group Australia https://www.facebook.com/groups/OccipitalNeuralgiaAustralia/

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Authored by: Lyn Worthington

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Brett Rose

I’m so glad I discovered this article. I’ve fought ON for over two years. I’ve battled depression and anxiety for over 16 years, along with severe back and sciatica pain over 10 years ago. This all makes sense to me now with my “spike headaches”.

I believe depression ties into this as a trigger for the pain.


That is a tough diagnosis that seems to involve the nervous system so I am glad that the virtual is some help. Still, I wonder how many of us can survive on just 90 mme for long. Many have a degerative system wide breakdown such as NEUROPATHY. Is deep breathing really what treatment has been relagated? Sorry but that is just almost preposterous if 90 mme and deep breathing take the place of treatment. Thank you to NPR for the past help and for what we are left with. I sinply have run out of time this life I guess.

Occipital neuralgia (or neuritis) is frequently misdiagnosed as a migraine headache. They can both be associated with nausea, and both can cause excruciating headaches. The differences are that migraines are throbbing, and ON is a steady lancinating pain that often shoots into the back of the eye and can cause a visual field defect.
In addition, pressing your thumb into the area below the skull on the side of the headache will cause a lot of pain - this is the occipital nerve sheath. As I previously mentioned, blocking adrenaline with a 5% progesterone cream, and providing the brain with the fuels it needs to lower adrenaline, will almost always fix this problem.

Molly Canfield

At 21 years old, I was diagnosed with Migraines by the 1st neurologist I’d ever seen. When my next migraine occurred, I was able to get an appointment with him (the next day). He bluntly told me (even though I had not askedfor pain medication…just deliverance from the relentless, sickening “poisonous mushroom” in my head.) that he “did NOT prescribe narcotics. As my eyes filled with tears that I couldn’t hold back, he added, “Pain never killed anybody.”

**I know that I’ve described this episode before, but feel like it bears repeating in hopes that it lets others know they’re not alone in their struggle and in hope that any physicians reading our stories will not forget that their primary goals are to diagnose and relieve suffering (heal). Also, I pray that our perspectives will help them retain humility and compassion.

I strongly suspect that the most common cause of this condition is due to the presence of excess adrenaline. Adrenaline causes the muscles in the neck to tighten, especially around the occipital nerve sheath at the base of the skull. The muscle tension can also cause circulation to the inner ear to be impaired resulting in tinnitus. In this situation, the application of a 5% progesterone cream to the back of the neck will provide relief fairly quickly. Providing the correct fuel to the brain will cause permanent relief (as outlined in the book called “Adrenaline Dominance”).

Another possible cause can be from the atlas (first cervical vertebrae) being displaced due to an accident. In this case it needs to be manipulated back into position.

Kurt WG Matthies

ON and cervical dystonia often accompany other serious cervical disease, like degenerative disc disease, cervical spondylosis, spondylolisthesis, cervical stenosis, and other conditions that cause compression the cervical nerves and inflame adjacent soft tissue. In my particular case, I’m getting some relief from muscle spasm and pain from quarterly Botox injections, which are covered by many insurance plans. If your medical situation is similar to mine, ask your spine pain practitioner about adding this treatment option to your pain management regimen.

Further to Alex’s comments, I had the honor and privilege to know psychiatrist Joel Hochman, MD, who shutterred his Santa Fe psych practice to help a friend establish a pain management program at the MD Anderson Cancer Center in Houston, while himself dealing with the kidney cancer that ultimately took his life. Dr Hochman made certain that each new class of residents coming to study cancer care, knew the seriousness of pain as it affects mental health. Put bluntly, pain drives people nuts, and demanding that they ignore the pain, destroys any possible trust between doctor and patient, because the doctor appears crazy to the patient. Can emotional distress create exhaustion? Absolutely. But we cannot lie our way out of what’s causing the emotional distress. Accusing the patient of Malingering, is commanding the patient to lie to himself and pretend he’s not sick. We instead must solve the problem that’s making the patient afraid! Only then do people truly relax.

sandy auriene sullivan

hmm I have an old hairline fracture along the occipital and mastoid process behind ear. Left sinus is impacted with polyps. IN May I started using flonase and the *softball* sized lump behind my ear? Is now a pea…. grooooosssssss. Flonase is a steroid that reduces the inflammation. It has helped me significantly. Headaches are down, blurred vision is down in the left eye [entire left is hosed since fracture and then MVA did more damage to that side]

My nausea is down but if I dont keep up with flonase? The swelling comes back behind the ear and I deteriorate rapidly into repeated bouts of shingles.

It’s got ON/CRPS features to it and my left foot has CPRS since a paralysis caused drop foot and furthered the nerve damage to the foot/ankle. Which has changed significantly and is cramping back into the position it was when born - pigeon toed. My leg is cramping back into place it was before correction braces were used on my legs at 18mos-2yrs for a year. Not one doctor knows why it is doing that or how to stop it.

Of course pain is not well managed despite hiding under suboxone and mmj florida while the regressive regulatory wave goes past.


My hope is that medical schools and residency programs will add curriculum that enlightens future doctors. Physicians cannot practice well without some degree of humility and the willingness to have faith in their patients. True, malingering does exist. It should not be assumed automatically. I personally have experienced this during an ordeal that lasted over 5 years. My chronic back pain was taken lightly. As my symptoms worsened and I was put on hydrocodone (that did work well) the problems started. The pain worsened due to undiagnosed compression fractures. I had early onset osteopenia. I was told to try accupuncture, physical therapy, counseling, topical ointments, etc. I ultimately lost my career. A colleague anesthesiologist (who called me a drug addict and turned me in to the Medical Board) told me bluntly that if I stopped the pain medication the pain would go away! My sympathy goes out to each and every one of you who suffer from chronic pain.


Thank you again. This is another example of the last complexity of the nervous system that has been poorly understood. The nervous system, including the human brain will never be completely known. These painful disorders have always been present. Centuries ago they were interpreted as anything from demonic possession to a simple malady that could be treated by snake oil. The amount of human suffering attributed to these poorly understood diseases in not measurable. Shame on those medical professionals who are so arrogant that they accuse patients of malingering or having a psychiatric disorder. Rather than admit that they DO NOT KNOW, they will mark medical charts with comments like these including drug seeking behavior. u


Thank you for this article about ON. ON is one of my many pain ailments. I was diagnosed after what was thought to have been a TIA aka mini stroke because I could move my right side of face and body nor remember name and address. After 4 days in hospital undergoing numerous cat scans and MRIs of head and spine I was diagnosed with ON, no stroke.. I’ve had these types of headaches since I was a child. The pain affects my right side of head and neck but sometimes it happens on left and sometimes both at same time but mainly right side. It’s extremely painful and debilitating. Sometimes there’s no warning when a flare up hits and it drops me to the floor in excruciating head pain. It’s awful. Nerve blocks for me are unsuccessful so I suffer through the pain when it hits. My daughter’s also have ON and is oftentimes hereditary my neurologist said. One of my daughters get these headaches so bad that she’s in bed for days. Nothing helps her ON.