Owning Occipital Neuralgia

By Tiffany – 

On my oldest daughter’s first day of 1st grade in August 2015, I got the worst migraine (or so I thought it was a migraine) I had ever had.

I had just picked up my oldest daughter from school with my 2 year old daughter in tow and I could feel something ominous happening in my head. Upon arriving back home, my pain quickly turned from “somewhat tolerable” into “certain death.”

I was sure I was dying.  I don’t even have words to describe the pain I felt, but it was at least 10 times worse than a bad migraine.

Next came vision loss. When trying to “see,” everything looked like “TV snow,” like what you see on a TV station with poor reception. I later learned that there is an actual name for this. According to Axon Optics, “visual snow,” something commonly experienced by people with headaches and migraines, is characterized by a disruption in visual perception, typically appearing as tiny black and white dots in the entire visual field.  This was totally different from any migraine aura I had ever had.

Soon after losing my vision, I began projectile vomiting. Uncontrollably. My girls were terrified and crying, but my oldest kept bringing me bowls to catch the barf that would have otherwise ended up on the couch.  I was quietly moaning from the pain and nausea with my Chihuahua, Lulu, glued to my side, also moaning and crying.  She was scared too.

Something was very wrong and I was worried that I couldn’t take care of my kids in this condition.  I reached for my phone to call my fiancé, who was still at work, but I couldn’t see the screen well enough to make a call.  My older daughter took my phone and was able to call my fiancé by locating his picture on my call log. No answer. 5 more calls and still no answer, so she finally called 911.

When the EMTs arrived, my girls were hiding upstairs while I remained on the couch, still emptying my intestines. The EMT’s delivered an onslaught of insensitive questions and demands which were specifically difficult to answer and follow given the absurd level of excruciating pain I was experiencing.

I was soon informed that the EMTs were calling the police to take my children until an adult family member could be reached. I wanted to cry as I knew my girls were already afraid, but the pain deprived me of the ability to think clearly, let alone muster a tear to match my physical and emotional agony.  Thankfully, as the police pulled up and I was put in the ambulance, my fiancé arrived to take the kids.

EMT: “Ma’am, what’s your pain level?

Me:  “A gunshot to the head would feel like a walk in the park right now… so, whatever pain level you think that is…”

Upon arriving to the hospital, I was treated with the standard “migraine cocktail,” which only dulled the pain slightly. By the next day, even though I felt like I had a bad hangover, my mental clarity improved. I wondered what the heck happened to me as this episode didn’t feel like a typical migraine.

Following this episode, I had several more that were characteristically similar, especially in intensity. I was in physical therapy 3 days a week at the time and nearly all of these episodes occurred following spinal manipulations at PT.  Had my migraines just upped their game or was physical therapy triggering something? It took several pain-filled months and a new neurologist to get some answers.

My Ultimate Diagnosis

On Feb 4th, 2016, I went to see a new neurologist. After discussing my medical history and symptoms and having me complete various neurological tests and exercises, he showed me a safety pin and said, “Let me know when you feel this and whether it is dull or sharp, okay?”

As I waited to feel something, I could see his arm reaching behind my head and then slowly moving toward the front of my head. As he got closer to my forehead, I was able to finally feel something and could differentiate between dull and sharp.  He tried again on the other side of my head, starting from the back and moving to the front. Same results. He said, with confidence in his voice, “You have occipital neuralgia.”

 

So, What is Occipital Neuralgia?

Occipital Neuralgia (also referred to as ON) is a relatively rare (affecting 3.2 of 100,000 people), neurological, primary headache disorder that can mimic migraines. “Primary headache disorders” are not caused by, nor are they symptoms of another condition. “Neuralgia” refers to pain along the course of a nerve, typically in the head or face, especially in the case of ON.

ONblog.png

In ON, it is the occipital nerves that are affected, which are responsible for carrying pain and sensory information to approximately 2/3 of the head. The occipital nerves start on each side of the 2nd vertebrae of the cervical spine (neck) and branch up the back of the head, like limbs of a tree, toward the front of the head, ending at the hairline. Pain is produced when these nerves become aggravated by tense neck muscles, whiplash, arthritis, or even just sleeping wrong, according to the American Migraine Association.

According to Sarasota Neurology, the headache symptoms of occipital neuralgia include:

• upper neck pain,

• pain at the base of the skull (may be on one or both sides),

• pain traveling up the back up the head as far forward as the forehead,

• pain behind the eyes,

• facial pain,

• pain that worsens by laying on your back,

• head/scalp that is sore to touch, and

• head pain ranging from a “nagging aching pain” to an “excruciating migraine headache type of pain.”

Treatment Options for ON and My Experience

While I was not thrilled about being gifted with yet another diagnosis to add to my growing collection, I was relieved to have some answers and to have found a doctor that was very thorough and proactive about my health and treatment.  He immediately sent orders to my pain management doctor for an occipital nerve block and recommended that my dose of Topamax be doubled.

Unfortunately, my insurance was denying everything at the time–including the occipital nerve block treatment. On top of that, new crack-downs on opiate prescribing made it nearly impossible to get adequate pain relief.

My pain management doctor was so frustrated over the occipital nerve block being denied by my insurance, compounded by receiving another denial for an epidural (for multilevel disc protrusions that are compressing my spinal cord), that he made a special note to my insurance company.  He wrote that he recommended that I get an attorney (for denial of treatment) and advised me to contact my Congressmen. He also noted that he nearly doubled my extended-release pain medication, since his hands were being tied in relieving my pain any other way.

Apparently this note made some kind of impact because I got a call a couple weeks later letting me know that the occipital nerve block was approved. Yay for shots in the head! I scheduled the nerve block for that same week.

I was so excited about possibly getting some relief, the anxiety over the procedure didn’t hit me until the night before I was scheduled to have it done. I had previously received trigger point injections and epidurals, so I wasn’t a stranger to getting poked with needles in the name of relief. However, I became quite the ‘fradey-cat at the thought of needles going in my melon. So, I turned the internet upside down in my search for what to expect.

I watched YouTube videos, pored over several webpages with detailed descriptions and joined multiple ON pages and support groups on Facebook. Unfortunately, my research left me even more anxious and confused.

What I found was that the procedure is not performed uniformly by doctors. Patients typically receive between 1 and 6 injections. There are different injection sites on the head. Various consistencies of medication are injected (clear, milky white, and sometimes both), which seemed to coincide with the different medications used–typically local anesthetics or steroids.

People also reported various levels of pain associated with the procedure–painless to excruciating–as well as various recovery and relief times, instant relief vs. a recovery time of 7-10 days.

Gray800

(Above: Diagram showing the distinction of the occipital nerve in the base of the skull and cervical spine. Via Gray’s Anatomy, http://www.bartleby.com/107/illus800.html)

The next day, I was surprisingly calm. I made it to my pain management doctor’s office with the help of my fiancé for the occipital nerve block. My doctor put injections on each side of the “greater occipital nerve,” located toward the bottom of the back of the head. I couldn’t even feel the first injection going in and only felt minimal pressure as he fanned the medication into my head.

The second injection was a whole other story. It was brutal. It felt like he was spraying acid into my head while also beating my head. I don’t know why it hurt so bad compared to the other one. However, it surely didn’t hurt worse than the occipital headache episodes I had been experiencing.

My fiancé almost passed out during the procedure. I dry heaved in the parking lot right after because I was super dizzy, started having hot flashes, and the pain was a bit intense from the pressure, but it all subsided pretty quickly. I had pretty amazing relief for about 3 to 4 hours despite the golf ball sized knots on the back of my head. The local anesthetic starts working almost immediately, but the steroid takes longer to take effect.

After the numbing medication wore off, it started to feel like someone beat the back of my head with a bat. The injection sites were quite swollen and sore for several days. I had one severe migraine during this time, possibly triggered by the inflammation caused by the injections. During my recovery, on several occasions, I wrapped a heating pad around my shoulders and used one of my daughter’s elastic headbands to strap ice packs to my head.

Once the swelling subsided, I started to feel pretty good. Not only did the occipital headache episodes cease for a about 6 weeks, but some other symptoms of occipital neuralgia were also relieved. Prior to the nerve block, when lying down, I would often feel and even hear what sounded like an electric current running through my head. It felt like my head was being zapped by electricity.

Looking to the Future

Unfortunately, my vacation from occipital neuralgia was fleeting. The occipital headaches and other symptoms returned. Thankfully, the frequency and intensity of symptoms decreased, possibly due to the increased Topamax dosage.

Today, I tend to have much more of the “nagging aching pain” than the “excruciating migraine headache type pain.” Nevertheless, it is still quite debilitating. I honestly can’t remember how it feels for my head to not hurt.

As with migraines, occipital neuralgia is NOT your “run of the mill” headache; it is a neurological disorder. Not only do I feel it is important to make a distinction between ON and “normal headaches,” but also between ON and migraines. I feel this is especially important when talking about ON with friends and family who may not otherwise understand this condition.

If I refer to ON as just a “headache” or even as a “migraine,” I have found that it is difficult for people to understand my experience with ON. While many people who suffer from ON also have migraines, as well as symptoms similar to migraine–such as nausea and sensitivities to light, sound, and smell–ON sufferers often experience much more, along with pain that is constant to varying degrees. With ON, it often hurts to brush and wash my hair. A fan blowing too close to me can make my hair hurt, something I didn’t even know was possible before ON. Many people, including me, also get referred pain in the jaw and face. I am often woken from my sleep by what feels like a lightning storm happening in my brain. Like I explained above, the pain I experienced from my first ON “episodes,” felt much worse than a bad migraine.

It is not my intention to minimize or invalidate the pain experienced by migraineurs, as I continue to experience both ON pain and migraines, quite regularly. However, it is my hope that my experience and these distinctions can help others better understand ON.


Sources:
http://sarasotaneurology.com/occipital-neuralgia-many-symptoms-of-headaches/
https://americanmigrainefoundation.org/understanding-migraine/occipital-neuralgia/
https://www.axonoptics.com/2017/03/visual-snow-guide/
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3 thoughts on “Owning Occipital Neuralgia

  1. Jen says:

    Thank you so much for eloquently expressing what it feels like to have Occipital Neuralgia.

    I am due to have my first nerve blocks soon and I am rather apprehensive. Unlike you, my neurologist is reducing and stopping my topamax due to the side affects. I hope the nerve blocks are effective! Good luck to you.

    Like

  2. Alexandra Verdien says:

    I am so happy to read a post about a Doctor who ACTUALLY CARED about the fact that you were suffering so much. He deserves an award because I swear every doctor I deal with doesn’t even let me finish my sentences when telling them about my pain and show ZERO sympathy. I hope you find relief for a long time.

    Like

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