That’s what I repeatedly heard over many years. It’s a tension headache. It’s a migraine. Your migraine has just changed over time. And, it did, eventually, into chronic and intense head pressure with a headache “overlay”, if you will.
As I look back, it’s difficult not be infuriated.
My headaches started in 2011, after I moved across the country for my husband’s job. I would get sore and tender around the neck and shoulder area, and the pain would move up the back of my head and cause painful headaches. It would last for a few days, then I would be fine for a few weeks (or even a couple of months), then it would return.
Initially, it did present as a tension headache.
During this time, I saw several different chiropractors, as I struggled with a straight neck (losing the curve of my neck), probably because my posture was poor (forward head posture). The adjustments made me feel slightly better, but the headaches kept coming back. A year later, in 2012, we moved back home to Idaho.
The headaches continued in the same way for a few years, until late 2015, when things started to change dramatically. I started to feel sinus pressure in and around my head and face. I felt a fullness in my ears, with the need to pop my ears all day long, trying to equalize the head pressure, but with no real relief.
I also developed tinnitus around this same time, which is a ringing or buzzing in the ears. For me, it was a low hum that would come and go, lowering my hearing temporarily in whichever ear it was in. I saw an ENT, who checked out my sinuses and ears, and told me everything looked normal. He suggested it was just a migraine, and sent me on my way with instructions for a food elimination diet.
Months later, it turned into chronic head pressure (24 hours a day).
I saw my family practitioner, who ordered some blood panels for me, but everything, once again, came back normal; no indication of anything concerning going on in my body. This did nothing more than confuse me, but she also sent me on my way.
Head Pressure Vertigo?
Later, I experienced 3 episodes of vertigo within a two week timeframe. I assumed this was from the intense sinus and head pressure, and once the vertigo episodes were over, I felt “off” for about 10 days. It was like a vertigo hangover, and is hard to explain, but I felt a little like a bobble-head. I didn’t want to move my head too fast because my brain felt almost like it was moving separately from my skull. I know that sounds super weird, but that’s the only way I can describe it.
I had never experienced vertigo before, and it really scared me (one episode happened while I was driving), so I called my ENT again, who suggested a brain MRI to check for brain tumors.
I had the brain MRI in April of 2016, and discovered, unbelievably, again, that everything was “fine”. No fluid, no tumors, no inflammation or infections of any kind. At that time, he officially diagnosed me with migraines. I didn’t believe that my scans were clean, so he showed them to me, but I still wasn’t convinced.
I decided to see a surgical ENT for a second opinion, and was brushed off once again. Even with the chronic head pressure and all the other symptoms, this guy claimed that my “migraine” had morphed, because headaches do that. He dismissed me and told me to take magnesium, Vitamin B2, and CoQ10, which was useless.
More and More Testing
At this point, I became angry and frustrated. I knew something was terribly wrong, so I continued my research, looking for any possible connection to the chronic pain, pressure and discomfort I was feeling. As you probably know, pressure headaches, or any other kind of headache or migraine, are associated with everything from stress and hormones to head trauma and tumors. It’s almost impossible to find the cause of something as common as a headache, even when it’s chronic.
My anxiety and feelings of desperation increased.
I was tested for allergies (none), had multiple eye exams (eyesight good), made more doctor appointments (to which I got a lot of confusing looks), had acupuncture, and looked into TMJ/TMD issues with a local dentist. I even tried sinus irrigations and allergy medications like Flonase, even though there was no mucus to clear from my sinuses. It just felt like there was.
At this point in the story, you might be wondering why I didn’t see a neurologist. It’s because I couldn’t get more than a couple to call me back. I had multiple neuro referrals from both my general practitioner and my third ENT, but either they didn’t have an opening or they rejected me because I was just a headache case.
I gave up for a little while after this. 2017 came and went with the same thing, day in and day out. 2018 got started and them something really traumatic happened.
An Unexpected Accident
I slipped and fell.
In April of 2018, I slipped on some water and fell on a TILE lobby floor, falling to my right and landing directly on my right elbow. The force of this fall crushed the bones in my elbow, requiring an emergency radial head replacement surgery (titanium implant). My head did not hit the floor, but it was forcibly thrown to the right, likely landing against my own arm as it slid out, although there’s no way to confirm this.
As I was recovering from emergency surgery 6 days later, I noticed increased head pressure, especially along my eyebrows and in the center of my forehead. At times, my forehead felt like a brick and at other times, my whole head felt “floaty”, like it could just leave my body at any moment. I knew it was worse, but nobody could understand what I was going through. I felt so off and uncomfortable, even more so than usual. My forehead felt so strange and heavy, and my eye pressure increased to the point of me thinking I had glaucoma, but another eye exam showed that I didn’t.
Soon after the accident, I saw a NUCCA specialist, because many of my symptoms kept coming up during my research, in relation to a misaligned Atlas (C1 vertabrae). Unfortunately, it proved to be a dead end, as he wouldn’t adjust my Atlas, finding that it was perfectly, laterally, aligned. He instead recommended other tests to check for tumors and rare brain diseases.
I’m highly sensitive and was diagnosed with Adrenal Fatigue the month prior (due to the accident and the loss of my grandmother in the same week). I didn’t need the additional stress on my system. I was already struggling with an overwhelming amount of physical and emotional stressors, and symptoms (which I believe also contributed to the progression of this condition).
Instead, in late 2018, I continued my research on Axis instability, and came across this blog post that seemed to connect all the dots for me. It’s extensive, and definitely went way above my head in some areas, but it started to make some sense, with some of the strange symptoms I’d been having. The gentleman who wrote it lives in Norway, but I contacted him anyway. He read my old MRI from 2016, because that’s all I had at the time.
What he discovered was startling. He saw a severe forward translation of my Atlas, in which the transverse processes (ends of the Atlas if you were looking at it from behind the head) were compressing my internal jugular veins, completely occluding the right and significantly obstructing the left side. There were many other problematic things to note, but these are the most vital, as it was the suggested cause of the intracranial pressure I was feeling.
I was devastated, as his only suggestion was stenting of the jugular veins, which after looking into it, I realized wasn’t really a viable option. It was new with many failed attempts, with even worse side effects.
He warned me against massage and chiropractic adjustments, especially around my scalenes, but didn’t really explain why. I adamantly told him that I really needed the adjustments, so he suggested something called Atlas Orthogonal.
I had never heard of it, or ran across it in my research, but learned it was the adjustment of the Atlas, specifically, using sound waves, so it was a much gentler approach to cervical adjustment. This sounded great, since I always got a raging headache after a manual or activator adjustment. Finding someone who practices this is a different story, but I finally found someone an hour and a half from where I live.
He took fresh X-rays and said he felt like he could help me, and although the adjustments were a lot easier on me, they weren’t really helping the headaches or pressure, even after 4 months of treatment. I later learned that this chiropractor was not performing the Atlas Orthogonal treatment correctly, and probably made things worse. To his credit, he tried to help by recommending a guy out of New York who also did Atlas Orthogonal (MRI-guided), but had created a way to view CSF (cerebral spinal fluid) using MRIs. I had researched CSF flow in relation to intracranial pressure, either too much or too little, and I did appear to fit the bill.
Apparently, he has seen over 25k cases, and works with many patients who have neurodegenerative diseases, head trauma, or are similar to me – showing strange symptoms without knowing the cause.
He only saw “complicated cases”, though, and fortunately or unfortunately, I qualified, so I made the phone call for more information on what needed to happen next.
Since this post is already quite long, if you want to know what happened next, you’ll have to catch it in Part 2, where I discuss further imaging in NY, diagnosis, and potential treatments.
And, to those that have gone through something similar, bouncing from one doctor to the next, I feel you and I empathize with your journey, but I encourage you to keep searching, keep reading, and keep learning. It’s the only thing that got me on the path to healing. Life will eventually lead you where you need to be, but it’s not without it’s detours.
Here’s a detailed list of symptoms at the time:
- Fullness in my ears with a constant need to pop my ears to try and equalize the pressure in my head, but it never helped.
- Chronic facial, sinus and head pressure. This pressure was so bad, it hurt to lay down on a pillow or lean my head back onto anything when I sat down. I couldn’t wear headbands, sunglasses, or hats. If you pressed on the back of my head, I could feel it around my nose and forehead, or sometimes in my eyes. I now know this feeling was the movement of the CSF fluid in my head.
- Feeling like I was breathing through a straw at night.
- Shooting Pains in my temples, behind my eyes, behind my ears and sometimes on the top of my head. (Also “vein pain”, where I’d have a spot on my head temporarily become super sensitive to touch – burning type of pain, hence the reference to my veins.)
- Headache pain that came and went, but can layer over the head pressure and give me pain that requires me to lay down, and sometimes cry. Crying when you have a headache is bad – try to avoid!
- Tinnitus (low humming/buzzing in my ears on and off).
- Pressure at the base of my skull, near the base of the occiput bone, in the soft area right below it.
- Chronic pain in my shoulder blades and across my scalenes on both sides that goes up into the sides of my neck (mastoids, trapezius).
- Eye pressure and sensitivity that got really bad in 2018.
- Cervical spinal stenosis and slight twisting of the neck. I learned this later on when my chiropractor started digging deeper.
A detailed list of tests I had done:
- Blood tests: Mostly standard panels.
- Allergy tests: No allergies.
- Head X-rays: No fluid or tumors. Came back clear and normal.
- Sinus X-rays: 2018, came back clear and normal.
- Brain and C-spine Scans (1 in 2016 and another in 2018 – after the fall, and another set in early 2019- will discuss in Part 2): Radiology didn’t find much, but I learned later that it depends who reads the MRI.
- Upper Cervical MRI: Again, this didn’t show anything more than cervical spinal stenosis, which was moderate in some places, but didn’t appear to be the cause of my headaches or pressure, although it did contribute.
- Hearing Test: Also normal, but I did struggle to hear the low tones.
- Eye exams (2): My eyesight is pretty good. Need readers. No signs of infection, inflammation, or anything to be concerned about.
A detailed list of therapies I tried:
- Acupuncture on and off trying to rid myself of the chronic neck pain. I did not find it helpful for this, but it did help with anxiety and trauma.
- Chiropractic care, once I found someone who wasn’t a “crack and go” Chiro, proved to be informative. He was a very concerned gentleman that really wanted to find the cause, but just couldn’t. I had several x-rays done, which did lead me to discover both cervical spinal stenosis and a slight twisting of the neck.
- Orthogonal Chiropractic Care, which is the gentle adjustment of the Atlas using sound waves. As it turns out, the first orthogonal practitioner ended up adjusting C2 (Axis) and C3 (which you’re not supposed to do with the orthogonal instrument), as he didn’t think my Atlas needed adjusting.
- Massage helps release some of the tension build-up for me, especially in my shoulders, but not knowing what was wrong with me always made me a little nervous about massaging the neck area. I even had TMJ massage done on the inside of my jaw.
- Physical therapy was initially recommended to me, but it took three tries before I found one that could actually release the pain temporarily, because he used different techniques on me.
- Biomechanics. Tried it, but it was too intense for me, even though it got rid of my headache for a couple of hours.
- Aromatherapy, as needed, rubbed into my temples or inhaled during the day by way of a diffuser. This calmed me, but did not help the headache or migraine.
- Yoga to help with the pain I was feeling in my neck and shoulders all the time. The stretching of those areas sometimes took the pain down a notch, but not enough to matter in the long run and was likely making my spinal stenosis worse by compressing the discs.
- Neck Exercises to help strengthen my neck muscles muscles. This probably ended up making things worse for me as my neck muscles and tendons were probably weak and/or over-stretched.