Living with pain — Occipital Neuralgia
It all started 8 years ago. This severe pain in the back of my neck suddenly appeared out of the blue. I woke up 8 times out of 10 with a headache that felt like waves of compression pounding at every inch of my skull. I cant remember if I ever did anything that would cause such a pain nor could I think of anything else it could be other than a massive headache. I would and still do cry often from the pain when it is inflamed and as a result the intensity of the pain can often times leave me in bed for a large portion of the day. Of course you could imagine that this would be worrisome, so of course at some point after living in trial and error, I figured it was time to make a doctors appointment. I was around 22 at the time, so basically any complaint I would come into the doctors office with was brushed off as nothing most of the time. It was the most frustrating thing for me to deal with because I never got an answer to my problem that actually worked. I was stuck feeling like I would just have to live in pain.
Several doctors over the years had me do methods such as muscle relaxers, physical therapy, pain medications, and more. But none of it worked. This went on for about 8 years until recently. But before I get into all of that, I think I should mention that over the course of these 8 years I have been seen by medical professionals from different hospitals with different levels of experience and backgrounds all over California. One of which was a doctor in Los Angeles, CA who requested I get an x-ray. I did the x-ray and the results showed nothing. Nothing was my worst fear, which actually makes a lot of people I have told this to laugh and say to me, “well shouldn’t that be a good thing?”…and well yes…but also no. I tell them no because that means I am still without any answers to this mystery pain pulsating at the base of my skull. So typically the next thing someone will tell me is, “well have you tried asking for a MRI?”…and so that is exactly what I tried to ask for next. However asking for an MRI as a fairly healthy female in her 20’s isn’t exactly easy…and according to the doctors I’ve gone to, I am always turned away because I am “too young” to have any serious medical conditions. I do see where they were coming from and I can see why they made that decision. It’s just at the time it still left me feeling as though my pain was all in my head. My doctors couldn’t find anything wrong no matter what it seemed.
Health care has always been hard for me to navigate and with the massive options I’m given under Medi-cal, over time it honestly left me overwhelmed, so I sort of just dealt with the pain in hopes that it would just go away. So after being turned away or given some other reason for the pain for many years by several doctors, I was finally given hope. Now I wouldn’t recommend that people look up their symptoms obsessively as I have, but for about two years now one search result I ended up coming across over and over was Occipital Neuralgia. I never heard of this condition and honestly I think many people haven’t either. But because doctors never seemed to bring it up I just felt as though that can’t be it. I did try to mention it many times after discovering Occipital Neuralgia was a thing, but I was ignored or told I was too young.
Now, however, I am finally validated after my most recent doctors visit at my local clinic. I wasn’t going to go to this recent visit due to Covid 19, but I woke up one morning with no hearing in my right ear, so panic ran through me as I morbidly thought how that pain in my head must of finally ruined me and I am going to die. So I dialed my doctors office and got an appointment immediately. When I arrived, I was met by another doctor I’ve never seen before at the clinic. He checked my ear and thankfully it was just a build up of ear wax. I was relieved but once again felt somewhat sad about the fact that this means I will go another day without some answer regarding the pain in my head. A part of me felt defeated and so I wasn’t going to even bring it up. But something in me decided to ask about it again, what I was ready to call one last time. I tell him about the pain right at the base of my skull, the migraines, the aches, how this pain impacts my daily life and prevents me from doing things that matter to me. So he just listens and then reached to the back of my head and neck, then goes to his notes. He goes over them for what seemed like a decade and I began feeling nervous. Then he looks up at me, shows me a paper and says, “have you heard of the term Occipital Neuralgia?”.
Which if you are not familiar, as explained by WebMD, “Occipital neuralgia is a condition in which the nerves that run from the top of the spinal cord up through the scalp, called the occipital nerves, are inflamed or injured. You might feel pain in the back of your head or the base of your skull.”
I swear I never felt more relief in my life and I told him about all the experiences with previous doctors and how I knew this was probably the case but it seemed like no one believed me. He then replied to me with, “well, you must of seen some not good doctors”. Then he explained what we can do to solve the problem and eliminate the pain, wrote me a referral to a neurologist and left the room. I wanted to cry but saved that for the car ride home after getting my ears flushed out. It was the first time in months where I felt like something went right and that everything was going to be okay. I felt like a new woman.
Now I know very well this wont be the end of my chronic pain, but finally, at age 29 it’s a start! I hope to be as pain free as possible by 30 or at least learn to manage it better now that I know the source. If you think you have this issue please don’t give up getting the help you need! I will provide some additional information below. (Also reminder that I am in no way a medical professional. I am only referring you to things that have helped me better understand or help this condition in my experience. Please consult a doctor and/or medical professional about your symptoms).
“WebMD Symptoms of Occipital Neuralgia/ pinched nerve:
- Aching, burning, and throbbing pain that typically starts at the base of the head and goes to the scalp
- Pain on one or both sides of the head
- Pain behind the eye
- Sensitivity to light
- Tender scalp
- Pain when you move your neck”
Resources:
Web MD medical resource https://www.webmd.com/migraines-headaches/occipital-neuralgia-symptoms-causes-treatments
References:
Pain clinic focused on patients https://orangecountypainclinics.com/infographics/head-pain-occipital-neuralgia/
Health resource, directory, and library https://www.lahey.org/health-library/occipital-neuralgia/
Web MD medical resource https://www.webmd.com/migraines-headaches/occipital-neuralgia-symptoms-causes-treatments
Image with red arrows directed at skull Healthyandnaturalworld.com / yodiyim at FreeDigitalPhotos.net
