Can you share your story with us? How did you become interested in occipital neuralgia (ON)?

Of course. I’d like to start by saying that I am not a medical professional, but I have learned about occipital neuralgia through my personal experience and through speaking with others who deal with it.

Back when I was 13, I was playing softball and my teammate and I were both going for the same ball. We ended up colliding and I took the brunt of the hit, leaving me with a concussion, whiplash, and neck injury. Initially, the headache didn’t start until later that night and then we ended up going to the hospital. The doctor told me that as long as I rest and stay in a dark room with the lights off, I’d be good to go in three days. He said that I would be back on the field in three days. That didn’t happen.

The headache was only continuing to get worse after that, so I ended up pursuing more specialists. After about two years, of not knowing why I had this headache, I ended up with the diagnosis of occipital neuralgia. During the collision, I had damage to the nerves in the back of my head, the occipital nerves, and they ended up getting compressed which was resulting in this constant headache.

The doctor’s passed me around and it wasn’t until that two-year mark that I finally got the diagnosis of occipital neuralgia. I also had chronic neck pain that I was seeing this doctor for so it was kind of a fluke that he diagnosed me. He said that his cousin is a neurologist and taught him the symptoms of occipital neuralgia so he recognized my symptoms.

For so long the doctors had kept telling me that I was dealing with post-concussion syndrome, then they said headaches, and then they said migraines. It was crazy because I had never had a headache in my life up until this point. All the treatments that they have me for headaches and migraines weren’t working. When I was diagnosed, my pain was starting in the back of my head and it was moving towards my forehead. It was following the occipital nerves and I had symptoms like pain behind my eyes, eye fatigue, pain above my eyebrows, dizziness, lightheadedness, light noise, and sound sensitivity. When the doctor diagnosed me, he put pressure on the back of my head and I almost jumped out of my chair because the pain was so bad.

ON is hard to diagnose because it doesn’t show up on an x-ray, CT scan, or any imaging. It’s considered a diagnosis of exclusion so they had to rule out other ailments like a brain bleed.

I finally had a diagnosis and I asked him what the next step was and he said to continue with physical therapy. Meanwhile, I’ve been doing physical therapy for years and it wasn’t making me any better. It was great that I had a diagnosis but there wasn’t anywhere to move forward with so I continued with physical therapy. Then I tried vision therapy, and acupuncture, changed my diet, did massage therapy, and saw a chiropractor, and doctors put me on antidepressants, nerve medications, and migraine medications, and they didn’t work. If anything, they made me worse mentally.

They ended up doing what’s called nerve decompression surgery on me. That was the first surgery I had. To see if you’re a candidate for nerve decompression surgery, they do diagnostic nerve blocks in the back of your head. If you experience any relief from the nerve blocks that would signify that the occipital nerves are involved and that you are a candidate for surgery.

I had the surgery back in February 2019. The surgeon removed all scar tissue, fascia, and everything that was compressing the nerves. He removed part of my left occipital nerve. Before the surgery my pain was at a constant eight or nine, so I wasn’t going to school anymore and I was almost bedridden. The surgery brought my pain down to a 2 which was amazing. That lasted for 3 months.

We weren’t entirely sure what changed, but right at that three-month mark, the pain got really bad again and I wasn’t able to do my daily activities anymore. I had to go back to being homeschooled.

That following year, I started looking into a nerve stimulator implant which is a two-step surgery. The first surgery is a trial where everything is placed on the outside of the skin and then as long as the trial proves to be successful, you’ll go forward with the implant. The idea of the neurostimulator is that it sends electro currents that are meant to stop pain signals from reaching the brain.

During the trial, I had the battery pack placed on the outside of my chest and then I had wires, called leads, running to the back of my head and then two running right above my eyebrows. These were all superficial. To see if it was working, we had to go places where I would usually experience worse pain, so we went to a movie and an arcade. Normally I couldn’t even step foot in an arcade because the lights and the noise made my head pain so much worse. With the nerve stimulator, I was able to stay in the arcade for almost two hours which was huge for me.

We went forward with the implant a couple of months later. That surgery was back in May 2020 and it brought my pain down to a one or two, but again at the three-month mark I was having severe pain again and whenever I would try to adjust the frequencies on the stimulator it wasn’t helping. In some cases, it was making the pain worse, so I started going back and forth to my surgeon to have it reprogrammed to make sure that all the settings were adjusted properly. It still wasn’t working right.

A couple of months ago I was admitted to the hospital for DHEA therapy. The hope was that it would break the pain cycle and then once the pain cycle was broken they would administer infusions. Unfortunately, the DHEA therapy did not work as well as we had hoped. 

Right now my pain has become a lot more manageable. I’m able to live on my own and go to school now. My surgeon believes that it’s the placement of the leads from the neurostimulator that is contributing to this new life that I’ve been given. I don’t turn the stimulator on anymore.

I’m getting infusions every three months. I’ve done 22 rounds so far and they said that it would take three or four rounds to tell whether or not it’s working

Can you tell me what inspired you to start the ON Foundation and help others with ON?

I feel like one of the main drivers to creating this organization was the overall lack of support both in the medical field and in my personal life. My family has been amazing, but it’s hard because no one can see that I’m in pain. I’ve been living with a headache for many years and no one really understands. Occipital neuralgia is so different than just having a headache because there are so many factors. It almost feels like lightning bolts throughout your head within the nerve. I was looking for support and I found support through Facebook groups.

I created a Facebook account for the sole purpose of finding support and I joined a couple of different Facebook forums. At this point, I was probably 15 or 16 years old. I was incredibly disappointed by the support that I found in these groups because the majority of people in these groups had given up on their lives. They were no longer seeking treatment. They were content with lying in bed all day and not pursuing anything else.

This made me feel even worse about my situation, especially being so young. I thought I could rely on these older people for support, but I wasn’t receiving the support I needed. With the medical community, I would be the one explaining what ON was because they were still classifying me as having a headache or migraine and they were still pushing those treatments on me.

Then there were the financial aspects of dealing with ON. Since ON doesn’t show up on your imaging, there isn’t any concrete evidence that you have occipital neuralgia. Growing up I had my parents and they financially supported me. For example, I needed nerve blocks that could be diagnostic or therapeutic and it was $400 out of pocket each time. Then they recommended Botox to me, but because I was under 18, the insurance would not cover botox. Botox is a type of treatment that you need every three months and it would have been $1200 out of pocket each time. My surgeries were considered to be experimental, so it’s incredibly hard to get insurance to cover those types of surgeries. My parents have shelled out thousands and thousands of dollars out of their pocket just to pay for these surgeries.

Overall, I was hoping to find more support and meet other people dealing with this. I remember the first time I met someone else dealing with this condition. It was the most incredible feeling to know that I was not crazy and that other people do deal with this. 

All of this led me to creating the ON Foundation. What I didn’t realize up until I created it is that this would be a coping mechanism for me, because using my pain for a purpose has helped me accept the pain that I’ve been given.

What resources does the ON Foundation provide to people struggling with ON?

There are details about what ON is, how to go about receiving a diagnosis, and what the symptoms entail. There are two virtual interviews that we hosted with Doctor Huma Sheikh and Doctor Ziv Peled. In the video with Dr. Peled, we covered everything from diagnosis to symptoms to different treatments. We also talked about the linkage between long Covid and occipital neuralgia. In our interview with Dr. Sheikh, we talked about the difference between occipital neuralgia and migraines. 

There’s a study that we conducted back in 2021 with Patients Rising (a patient advocacy organization). Through this study, we had roughly 120 respondents and we broke down the information to see where the needs are lacking in the ON community. Through the survey, we learned what doctors were doing the diagnosing, the different insurance difficulties that people ran into, and then there is a whole section about pediatric care. 

We learned that there were seven respondents under the age of 18. Six of those respondents felt that they had minimal access to specialists since they were considered pediatric patients.

There’s also a contact form so anyone is more than welcome to fill out the contact form and get in touch with us.

According to your website, it takes an average of 3.96 years to receive a diagnosis. Why do you think that is?

I think one of the biggest problems is that the medical community confuses occipital neuralgia with headaches, migraines, and post-concussion syndrome. I believe that there needs to be more resources in the medical community. For example, we tell our followers to print out the study that we did and to bring it to their medical provider for them to look at so they can be enlightened about some of the things to look out for in occipital neuralgia.

Getting a diagnosis is huge and a lot of people are getting misdiagnosed. People get diagnosed with migraine and then continue with migraine treatments. A lot of doctors just don’t understand what occipital neuralgia is. One of my doctors had to Google what ON is when I saw him.

Does the ON Foundation website provide any resources for getting involved with clinical trials?

We do have a link directly to clinicaltrials.gov. I haven’t looked at it in a few weeks, but when I did look at it, the clinical trials being offered were the same treatments that have already been used on me like nerve decompression and the neurostimulator.

What would be your advice for somebody who is newly diagnosed with ON? What is your advice for someone who has been struggling with occipital neuralgia for 10 years and they have started to give up?

For someone newly diagnosed, I would suggest finding a specialist specializing in occipital neuralgia, even if that means you have to see someone virtually. This will help cut down the timeline of everything. My surgeon was located in DC and my other surgeon was located in Dallas, TX, so we had to travel to ensure that I was receiving the best treatment. In the beginning, my doctors recommended physical therapy, but when I met with my first surgeon, he said that physical therapy was doing more harm than good for me because it was stretching out already damaged and inflamed nerves. It was contributing to more and more pain. Some physicians still recommend physical therapy for their patients with ON and it does help some people.

I would also say don’t be afraid to advocate for yourself, especially being that I was so young when I was dealing with this. I was told repeatedly that it was just anxiety giving me a headache. As hard as it might be, make sure that you have a voice. 

Also, remember that doctors are just people too. We grow up thinking that doctors know everything, which isn’t the case. 

For someone who’s been dealing with this for an extended period of time, don’t give up because it seems like there’s no light at the end of the tunnel, but there’s always new research coming out. There’s always something that could potentially work for you.

When I was at my very lowest, I was doing one thing each day that brought me happiness. It could be as simple as making myself a cup of coffee or watching my favorite show. I feel like this goes for anyone dealing with chronic pain. It feels like we’re a burden a lot of the time which makes it difficult to talk about what we’re dealing with and we don’t want anyone to stress about us.

Talking to your support system can make a world of a difference. You might not know exactly what to say all the time or how to help someone like your loved one who’s dealing with chronic pain, but just being there and listening makes a huge difference.

For my last question, is there anything else that you would like to talk about?

Like I said in my last answer, don’t settle for the pain that you’re in right now. Keep fighting for answers, and when it comes to the medical community, we just ask that you hear us out. We ask that you listen to our pain and that you look at us for the bigger picture rather than just our diagnosis.

Our survey showed that 60% of people are diagnosed by neurologists, but only 45% of those people continued under the care of the neurologist that diagnosed them. That leads us to believe that you get the diagnosis and you’re passed on to the next specialist.

Takeaways:

• The ON Foundation was created to be a source of community and information for those with occipital neuralgia.

• Pediatric patients with occipital neuralgia have a harder time finding specialists and resources available to them.

• ON is commonly misdiagnosed as headaches, migraines, and post-concussion syndrome.

• When you’re first diagnosed with ON, find someone who specializes in it to treat you.

• Don’t be afraid to advocate for yourself.

Thank you so much to Kayla Smock for doing this interview with me. I loved hearing her story and learning from her experiences. The ON Foundation is an amazing resource for people with occipital neuralgia. Here is the link if you’re interested in learning more: https://www.onfsupport.org/

Hang onto hope guys!