The headache started five years ago. It announced itself while I was working at a restaurant in New Jersey. In half a decade, I haven’t had a day without it.
Beforehand, I struggled with anxiety and depression. I was seeing a therapist who, at the time, diagnosed me with ADHD. She said my ADHD manifested as hyperfocus as opposed to an inability to focus. Hyperfocus is when you become so engrossed in an activity you block out the world around you. I saw another therapist who said I had PTSD. Another told me I had, “a little bit of everything.”
The headache immediately commanded the entire bandwidth of my attention. Once it started, I couldn’t ignore it.
I was white knuckling my way through sobriety when the headache began. I stopped drinking because I had panic attacks when hungover. These out of body experiences scared me enough to reconsider my relationship with alcohol.
My parents do not experience chronic headaches, but my father has a tremor that makes his head shake. He deals with it by holding his hand on his chin. This eases the shaking and gives him a sense of comfort. I inherited the tremor in my mid-twenties, and cope with it the same way. He also has epilepsy and a lot of tension in his neck and back. I’m not epileptic, but the tightness in my upper body is constant. My twin brother occasionally gets headaches, but it’s unclear if the cause is genetic.
What I am afflicted by is a tension headache, not a migraine. It’s a band of tension that wraps around my head, and travels down my neck and back. When the pain is more pronounced at the top of my head, I fantasize about hammering a nail into the crown of my skull. When it’s a slow thud knocking at the back of my brain, I think about putting a power drill through my temple. Sometimes, flossing my brain with barbed wire seems like a good idea.
I originally blamed anxiety for the headache, but I soon came to believe it was a physical manifestation of depression. There’s a correlation between the two, though one is not the other. This was the theory:
I had low self-esteem for a long time. But, as a concept, self-esteem isn’t very helpful. When a person has high self-esteem it presents itself as narcissism. When we have a dim view of ourselves, we experience an endless stream of negative thoughts. When we criticize ourselves, we tap into our bodies’ fight-or-flight response. Our sympathetic nervous system evolved to handle threats to our bodily self. These days, the threat is to our self-concept.
Self-criticism releases cortisol, which creates stress and anxiety. When we think negative thoughts about ourselves we feel threatened, so our body attacks the problem, which means we attack ourselves. The body will shut down to protect itself when exposed to cortisol for an extended period of time. I thought the headache was a physical manifestation of this.
People self-harm to create a manageable crisis for themselves. The headache is like the body self-harming to create a problem it can deal with, as opposed to something entirely existential. It is also a signal.
Our society stigmatizes loneliness. People under-report it. We think of it as neuroticism. Loneliness is misunderstood as a feeling when it is a pain signal, a danger signal. It’s our body telling us that something is wrong. Loneliness exists to tell you when you are becoming disconnected. Like physical pain, it is social pain for the purpose of protecting your genes for survival. I thought there was a real possibility that my body was turning psychological pain into physical pain, possibly for the purpose of protecting me. In some way, the pain existed because I needed to pay attention to things I was ignoring.
The headache first appeared when I was meditating. I would take a seat, and visualize thoughts going through my head like clouds. I felt a sense of calm after 20-minute sessions.
But I sometimes had a weird feeling in my brain — a swirling followed by a sensation that I was being stabbed in the head. It was such a strange feeling I didn’t know what to do. I’ve been told meditation can cause headaches (something to do with chakras), but I am reluctant to believe meditation can be harmful. I assumed my brain was broken. It didn’t take long for the stabbing to transform into a thrumming, pulsating neuralgia. After a few days I called a doctor.
I skipped over seeing my primary care physician and made an appointment with a neurologist. The neurologist asked me to keep a headache journal, and prescribed me extra-strength Excedrin. He did not order any tests. Then, I met a psychiatrist who prescribed me Lexapro and Xanax. The Xanax helped, though it had the typical side effects of mood altering substances. The psychiatrist thought the headaches were related to anxiety. He was clear his only function was to prescribe medication; if I wanted to talk to someone I had to see a therapist. He did not order any tests.
After, I saw a psychologist and another psychiatrist. The psychiatrist switched the Lexapro to Zoloft, and Xanax to Ativan. The psychologist was an old Danish man who wanted to get to the root of the problem by asking about childhood trauma. His approach was what you would call Freudian.
Freud’s form of therapy was psychoanalysis. He believed thoughts were intimately related to who you were, and your dreams revealed primary urges. Many people still believe this. Many people also believe they can control their thoughts. This is the power of positive thinking — a lie.
Some people still refer to therapy as, “analysis.” It wasn’t until Aaron Beck came along in the 1980’s that things started to change. The father of cognitive behavioral therapy, Beck had his own term for self-criticism — “automatic negative thoughts.” His version of therapy, which many therapists use, encourages you to challenge your thoughts. Overall, CBT does not believe that thoughts are necessarily indicative of anything deep. However, I’m not sure how helpful it is to argue with yourself about your thoughts.
The most modern approach to psychology (we’ll just call it mindfulness) says your thoughts quite literally have no meaning, and can and should probably be ignored whenever possible. The idea is that, instead of resisting thoughts, you change your relationship with them.
Forms of somatic therapy are also becoming more popular, and people are waking up to the relationship between the mind and body again. For the record, we can’t control the conditions in our mind. But we can have a shift in perspective. This is especially important for people who obsess over thoughts.
The amygdala is the emotional center of our brain that identifies threats in everyday situations. It releases chemicals like adrenaline. It primes our body to either flee or fight. The amygdala’s of people with clinical anxiety are overly sensitive. People with anxiety can’t reason their way out of the feeling because the logical part of the brain isn’t able to rein in the amygdala.
My basic knowledge of psychology told me that the Freudian psychologist wasn’t able to help me. Thankfully, he encouraged me to get an MRI. I made an appointment at the neuroscience department of a local hospital the next day.
At the hospital, I met a neurologist who prescribed an MRI. However, my insurance wouldn’t cover it. They said my headaches weren’t urgent enough to necessitate an MRI. My neurologist said most MRI’s are superfluous, so he didn’t pressure the company to authorize one. He prescribed me a series of drugs instead. The first drug was a muscle relaxer, but I had to stop taking it due to my history of substance abuse.
Some say they use drugs to numb themselves. Others say they use drugs to feel more alive. Ultimately, people do drugs to feel a sense of ease and comfort. You are trying to feel something — it’s actually the whole point. The point is to feel it.
The best way I can put it is that, when you’re on drugs, you’re numbing your overall emotional experience, but also feeling certain things more intensely. When you numb the difficult emotions, you numb your capacity for a well-rounded emotional experience. Of course, it depends on what drugs you’re doing. There’s a physical and mental component to addiction, but it’s also an inability to sit and be with yourself.
Addiction is the result of struggling with what it’s like to be the person you are. A part of being sober is being okay being alone with yourself. In other words, just being in your own company.
At some point, I discovered stimulants helped with the headaches, and I tried to get an Adderall prescription. Multiple doctors turned me down. I was then prescribed Depakote, which didn’t do anything. I was also prescribed Topiramate, which may have dulled the headaches, though it was hard to tell.
By now, years had passed since the headache started. For a while, it seemed like the only thing worth doing was self-medicating. In the short term, drugs really helped; in the long term, they really didn’t. It wasn’t until Covid-19 hit, and I lost my job, that I actually had time to see another doctor and get some answers.
In May, I called the Headache Institute of New Jersey to see if I could receive Botox as a treatment. I told the doctor my story. She couldn’t believe I hadn’t received an MRI, or any other tests. She told me if insurance denied the MRI again, she would make sure they approved it. She also ordered an allergy test, a balance test, and a stress test. I brought up the idea of testing to the other doctors, but it’s not something they ever acted on.
Many chronic headache patients have allergies that might trigger them. I have no such allergies. I did well on the stress test, and I did okay on the balance test — it was the MRI that was interesting.
Apparently, I have a spherical tumor in my left occipital lobe measuring 12 millimeters in diameter. The headache doctor referred me to a neurosurgeon. At first, the neurosurgeon told me the tumor has most likely been in my brain forever, has very little mass effect, and is not growing.
The occipital lobe is the back part of the brain that is involved with vision, so if the tumor had mass effect my vision would be affected. The tumor is actually abutting my vision fiber tracts.
The neurosurgeon sent the MRI to the tumor board for review. At first, they recommended we simply monitor the tumor with regular MRI’s. This was considered preferable to removing the tumor, or even getting a biopsy.
However, after a few more MRI’s, the tumor board recommended the tumor be removed. Before doing that, though, I got an angiogram. An angiogram is a procedure that illuminates the blood vessels in your body. I got it to see if the tumor was actually a cavernoma or an AVM.
But the angiogram didn’t reveal anything definitive. Multiple neurovascular doctors concluded the mass didn’t exhibit all the characteristics of a cavernoma, nor did it exhibit all the characteristics of a low-grade tumor. For the time being, I’m going to get an MRI every six months to see if it grows.
None of the doctors I saw thought the tumor had anything to do with the headaches.
Rather, one doctor thinks the headache is caused by nerves in my brain stem. She thinks my spine is too straight, which leads to the muscles in my neck shortening, which irritates my nerves — the cause being my spine. The neurosurgeon thinks muscle tension irritates my nerves, which leads to spasms in my neck, which straightens my spine — the cause being muscle tension.
The neurosurgeon said I could get surgery cutting the nerves leading from my neck to my brain. I could also get some kind of neurological pacemaker put in my head that would lessen the irritation of the nerves.
I was interested in experimenting with numbing the occipital nerves in my neck to see what that felt like. I was instructed to see a pain specialist to test it out. He looked at the MRI of my neck and said that it was “pristine.” He thought the issue was muscle tension.
So I tried Botox instead. The issue with Botox is that insurance won’t cover it unless you fail three medications, and even then it’s not a guarantee.
The second I got the MRI results I applied for Medicaid. Between all the doctors and MRI’s I’d go broke with the bronze-level Obamacare I had. I qualified for Medicaid because I was unemployed. The only reason I knew to do that was because someone I previously worked with had a brain tumor. He emphasized how important it was to get Medicaid to pay for all this.
I was approved to get Botox in September. I got 31 injections throughout my head, neck, and shoulders. I’m not sure if it has helped. Sometimes, it takes multiple rounds before the Botox builds up enough to loosen muscle tension (I’ve gotten it three times). What has helped more is a combination of physical therapy, and almost 1000 milligrams of Gabapentin a day.
Contributing factors to the headache may include the ergonomics of my computer setup, as well as bending over to use my phone.
Every doctor, with the exception of my psychiatrist, questions whether or not I should be taking Ativan. I am aware of the effects of benzodiazepines, but I feel my anxiety gets so bad that I need to be on medication for it. For years, the Ativan was the only thing giving me any relief from the headache.
Exercise, meditation, and biofeedback techniques have been mentioned as good things to try. Diet may also be important. Unfortunately, when you have chronic pain the motivation isn’t alway there to exercise, and my experience with meditation is a mixed bag. I still meditate, but I prefer yoga these days. My headaches are not quite debilitating, but any chronic pain will wear you down.
Completely getting rid of pain is unrealistic. Instead, I want to learn how to deal with pain, tension, and discomfort as it arises. I’ve learned that adding resistance to pain creates suffering. Although pain is bad, you don’t need to turn it into something worse.
I go to physical therapy for an hour, three times a week. I’ve learned very simple exercises that have allowed me to take some agency over the headaches. The best exercises I do are chin presses and a neck strengthening workout. I also get a very light massage behind my ears, which helps a lot.
I once spoke to a girl who was on lithium for more than 20 years. She said she was on it for so long she wasn’t sure where she ended and the lithium began. She wasn’t sure if it dampened her personality, or if it normalized her and allowed her to just sort of be who she was. I identify with that a lot.
It reminds of when this guy told me he got drunk to feel sober. You see, a lot of people think that a recovery program treats alcoholism. A recovery program treats the sober condition. I’m not against medication, but I don’t want to depend on it for the rest of my life — though I may have to.
Chronic pain is sinister because it doesn’t visibly manifest itself the way other disabilities or injuries do. Often, people don’t believe you’re in pain. Or they think you’re exaggerating. There is usually a kind of shame associated with it — it’s a lot like mental illness, and can exacerbate mental health issues. At times, the headaches would manifest themselves in the form of crippling chronic dizziness.
I have heard other people’s stories, but it’s usually a burden people go through alone. I have looked into chronic pain support groups, but they are few and far between.
I belong to a tension headache support group on Facebook and almost everyone in that group says they experience anxiety. This was an unscientific poll, so it wasn’t apparent if everyone had a disorder, or if they just experienced anxiety sometimes.
Anxiety is the most common mental illness. This might be a reflection of it being reported more than it used to be, and people might just have a greater awareness of it. I suspect everyone on planet earth gets anxious sometimes. I do wonder about the correlation though.
What I’ve come to realize is that, much of my life, I suppressed negative emotions. I didn’t necessarily leave space for the really difficult stuff. I was avoiding reality. These feelings are actually trying to tell us something.
People think they shouldn’t be feeling things that exist well inside the normal range of human experience. It’s not a question of should or shouldn’t, or good or bad. So-called bad or negative emotions are things that feel difficult and uncomfortable. But pain always comes out. I thought the headaches were some kind of reckoning. I was always waiting for the other shoe to drop. This was it.
What I’ve learned is that there is a whole bunch of accumulated experience residing within my body. Because it’s unprocessed and incomplete, that stuff recycles itself through my thinking and through my behavior. It gets activated as I go through life.
Within me exists a whole bunch of frustration, stored resentment, anger, shame, guilt, grief, buried joy and buried love. This isn’t a problem, because it’s universal. The problem is not allowing it to flow.
I was in my late 20’s when I learned you’re only as sick as your secrets. Isolation, loneliness and keeping things to yourself — it doesn’t help you. It’s quite damaging. I think it’s possible that certain, unprocessed things were getting blocked and I didn’t even know it.
Each doctor had a slightly different diagnosis. And no one doctor solved the issue. But each treatment led to something else which led to something else. The act of seeking help is in itself helpful.
What matters is the resources we seek, and the kind of guidance and community we reach out for. If you are fortunate, it’s possible to enlarge your worldview and cultivate the space needed to hold what life gives you.
“Writing about it helps me stay healthy, and it gets responses and helps create community around something that makes all of us feel very isolated. And there’s some sort of healing in the community itself.
It’s a shared journey with people who are further down the road. And it’s a support and blessing to both parties. Any time we can create community around something that, in the culture, tends to isolate us, is very important and worth doing.” — Parker Palmer