This week I’m “celebrating” (?) two years dealing with my chronic migraine condition. This is a post for anyone who suffers from migraines or any other chronic pain/ ongoing mental illness. Let’s stick together and support each other!
This is a long, personal post, with explicit material regarding mental illness. It may offend or trigger. For this reason, it’s behind a cut.
It feels odd to think about the first couple months when the headaches started. It seemed sudden at first – one day I woke up with a headache and it didn’t go away for almost a year. In retrospect, many symptoms preceded the physical pain. I would open my eyes in the morning and everything was blurry. I was often feverish. Then, my sinuses started to feel like burning pockets on the front of my face. Finally, the pain set in. I’d had plenty of headaches, even migraines, throughout my life, so I wasn’t alarmed by the first couple weeks. After three full weeks of headaches, I finally made an appointment with a doctor.
I don’t keep a general practitioner, so I had to go to some random lady who could take me ASAP. She spent less than three minutes with me, only running basic diagnostics: checking my eyes, ears, throat, pulse. All the while I’m spilling my guts to her about the agony I’ve been in for the better part of a month, but it was in one ear and out the other. She wrote me a prescription for Topomax, an anti-seizure medication, without explaining why. I asked her about possible causes and she seemed defensive, telling me there’s no way to know what causes headaches. I was heartbroken, not only because she didn’t listen to me or treat me compassionately – moreover, I wanted to get to the bottom of the headaches so I could make them stop.
I took Topomax for three weeks, despite the fact that I was quite scared of it. This was an intense medication for someone who only takes Advil when my menstrual cramps are prohibiting me from going to work. Of course, it did nothing, because three weeks isn’t nearly enough time to adjust to psychotropic drugs. I was going to sleep with a throbbing headache and waking up with one. I could hardly see, my vision was so blurry (this turned out to be eye muscle spasms, caused by my job at the time, in combination with the migraines). I was throwing up in the bathrooms at work at least once a week. I cried, every single night. Six weeks in, I flushed it all the meds down the toilet and started calling other doctors.
First I saw an optometrist, who told me I had better than 20/20 vision and recommended reading glasses. The glasses made the headaches worse (because I didn’t actually need them). I broke down sobbing in her office. Then I had a CT scan. Then I went to a neurologist, who ordered an MRI, an MRV, and a spinal tap. I put my foot down. We had already spent upwards of $1000 in medical bills/ medication, which my parents graciously covered. The neurologists were just as bad as my first doctor though – they didn’t listen to what I was saying, they acted like I was overreacting. It had been three months without even ONE HOUR, let alone one day, without relief from the pain. I was becoming alienated from everyone in my life. It was so bad that I’m getting emotional writing this.
It wasn’t even the pain so much as not knowing the why. I wanted a concrete reason, like a sinus infection, or an allergy, to explain the pain away. But there was nothing. Every test I went through, every specialist I saw, told me I was a perfectly healthy young lady. How in god’s name does a healthy woman, out of nowhere, start having a headache that lasts for over 90 days? That is not normal!
I continued with more specialists, more tests, more bills. Every doctor either wanted to drug me or perform some unnecessary operation. The neurologist gave me a heavy dosage of sleeping meds so that I could sleep for over 24 hours and try to “reset” my brain. An ENT wanted to perform totally unnecessary nasal surgery. Another ENT put me through elimination dieting, where I had to drastically alter my lifestyle for weeks at a time to make sure I had no allergies (this was probably the best attempt at resolving the issue).
I felt taken advantage of. Every doctor I saw, I would have to repeat my saga only to be met with a glazed over look. I felt like they were preying on a young, scared woman, pinching me for money with expensive treatments and referrals to yet another doctor who couldn’t help me. Six months in, my world fell apart. I felt betrayed. I had grown up believing in western medicine, hell, believing in science, where all sicknesses have a cause and a treatment. Life felt completely surreal, like there just was no way this was happening to me. It was either a dream I would wake up from, or one big mix up that would sort itself out so my life could go back to normal. It wasn’t fair. I am totally non-religious, and I even started begging “god” at night to help me. I started feeling like I was getting my punishment for sinning or bad karma. I remember one night, talking to my mom on the phone through sobs, screaming that I didn’t do anything wrong. That I was a good person and I didn’t deserve this. I wanted to die, and I thought about killing myself all the time. I thought – if this is the quality of my life from here on out, I’d rather not live it.
I finally saw one ENT that seemed to care. She explained to me that stress causes innumerable physical sickness, and was likely both the catalyst and the sustaining factor. She put it in layman’s terms for me – the more I freaked out about the headaches, the worse they got, because I was subjecting myself to extreme stress. She prescribed me Nortryptaline, a tricyclic anti-depressent used as chronic pain medication, and she explained what to expect. I had nothing to lose, so I started taking it.
It doesn’t work, at least not in keeping the headaches at bay. I’m still taking it, at a higher dosage. What it does accomplish is keeping the severity of the headaches down so that I can go to work and have a life. It also helped me pull myself out of the black hole that is depression.
Here’s the important part: I just gave you a day to day account of how I dealt with my headaches for the first year. There’s a second story that can be told, analogous to these events. This is the story that answered all my questions and helped me heal.
Around the time the headaches started, I was really starting to feel the pressure. I had quit grad school six months prior, which was very embarrassing and destroyed my self esteem. I was working three part time jobs, trying to pay down as much debt as possible and make ends me. I was 1,000 miles from my family and everyone else I loved. I had no friends where I was. I had no purpose, no drive, no desire to even be alive. I daydreamed constantly of my best friend from college, I barely slept, and I stayed up all night drinking. I was depressed, but I refused to acknowledge it.
Before the ENT blamed it on stress, I had come across the idea of stress as a culprit through research on the internet and online support groups. I scoffed at the idea – how could I – a strong, independent woman – let stress make me so sick? There was simply no way. All through out college, I took a full class schedule, worked full time, and still managed to find time to party and graduate magna cum laude. I’ve always prided myself on being tough – I don’t take medicine, I rub dirt in my cuts, and most importantly, I take care of myself. The idea that stress could cause my pain was a personal attack, a total affront to my work ethic and character.
I did more rationalizing by blaming all the symptoms of my depression on the fact I was in debt, or that I didn’t have a boyfriend, or that I couldn’t find a full time job. I talk more about my depression, and other issues I was battling during this time, in this post I talk more about my depression, and other issues I was battling during this time, in this post. I can write all this now, looking back, but at the time I thought I was being perfectly logical. I was pissed off that people were suggesting I couldn’t handle stress or mood swings. Whenever someone brought up a therapist, I exploded. Over my dead body. I “knew” that the headaches were a result of some scientific cause which I would eventually figure out – not because I was sad.
After a year of the pain, I was defeated. I gave up on doctors, and I had to face the ugly truth – that stress had to be the cause. I took many long, hard looks at myself, my lifestyle, and the people I surrounded myself with. At some point, something went off in my head and I simply accepted that the headaches would never go away. Amazingly, I felt a huge weight lifted from me. I was no longer fighting against something; the something had become a part of me. Of course, I didn’t fully internalize what this meant at first, but I did feel a great deal lighter, and relieved.
The headaches didn’t miraculously get better, or bother me less, after this realization. The pain was as visceral and debilitating as always. My mood did change though. I was relieved, and the headaches made me less angry. I surrendered to the pain, and, knowing I couldn’t control it, I started working on the things I could control. I exercised more, ate healthier, picked up hobbies, and got out of the house. I also found an amazing partner who brought hope back to my life after so much lonely darkness, but I don’t think of this as a solution to my problem. It was a bonus to already feeling better.
This sounds a whole lot like mindfulness practice, right? I wouldn’t take the MBSR course until months after I had begun healing though. Taking the class reaffirmed what I was already trying, and gave me the tools to truly begin healing. I had all these strong feelings about acceptance, the inefficiency of Western medicine, self-love, regaining focus in the mind – but I couldn’t articulate them. Walking into class was like having someone read my mind, understand my thoughts, and create a rigorous, academic/ medically validated program. I didn’t taste the benefits of the class until months after it ended, but I knew that I was onto something.
And that’s about it. The pain slowly faded and the frequency of the headaches went from daily to once or twice a week…. but this took months. Pretty anti-climactic, right?
Here’s the thing – it’s not about the pain anymore; it’s about how I deal with the pain. The MBSR class didn’t cure me of my condition, but it taught me how to cope. I’m not saying you even need to take MBSR or give a damn about mindfulness; what I do feel, with everything in my being, is that this shift in mindset, from fighting against to make friends with your chronic condition, is what changed my life. That’s something you can’t read in books; that your therapist can’t tell you; and that no course, religion, or belief system can instill in you. It’s something you must come to realize on your own.
To anyone who may stumble upon this, who deals with chronic pain, I just want to say (without getting too sappy) – you are more resilient than you have ever imagined possible. I know it’s nearly impossible to believe that when the pain just keeps coming and coming. Don’t read my story and expect your life to play out like this, but if you do take something away, take this – you are resilient and capable; trust this and look inward, instead of outward, for relief.