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Finding an Effective Migraine Treatment: An Emotional Whirlwind

Hart uses this picture of me in presentations to show his motivation for starting TheraSpecs.

Hart uses this old picture of me in presentations to show his motivation for starting TheraSpecs.

Despite frequently wondering what life would be like if I ever found an effective migraine treatment, I wasn’t prepared for the emotional whirlwind of it.

In the first couple weeks, elation and nervousness dominated my thoughts. Being able to do the normal, mundane things of life felt incredible, but I was also overwhelmed. I kept wondering what life would look like without constant migraines. What would I do with my days? What would work be like? Would I be able to resume friendships that have been on hold? How would Hart and I relate to each other? Would I still want to write about migraine? Nothing bad or worrisome was happening, but I couldn’t wrap my mind around how my day-to-day life would change.

After those first overwhelming, uncertainty-filled weeks, my thoughts mostly settled down, but I experienced four weeks of very strange anxiety. You know that fluttery nervous feeling you get in your stomach? I’d get that for a few seconds with every thought. And I mean EVERY thought, from “I need to downshift” while driving and “So that’s how they’re related” while watching a movie. My reaction to thoughts that actually provoked anxiety was exactly the same. The flutter happened less and less frequently over the four weeks until it disappeared.

Those are the stressful and strange reactions, but I’ve mostly been amazed by two things: how easy everything is and how present I am.

Showering no longer brings imminent collapse. The dining chairs and table are no longer too hard to sit at for meals. Making phone calls is no longer beyond my ability. Going to the grocery store is no longer the sole activity I can do in a day. Such simple things have taken maximum effort for the last 10 years. Without having to psyche myself up before every chore and not being exhausted by minimal tasks, everything seems unbelievably easy. This extends to writing, too — without constant brain fog, writing is so much easier. I’ve even been able to wade through tons of medical journal articles and understand them without trouble, then synthesize the findings into my own words.

And I no longer feel constantly separated from the world, unable to connect with other people or be truly present at any moment. My conversations are more interesting, being with friends is more fun, work doesn’t feel like work, my time with Hart is fantastic. I’ve always struggled to put that sense of disconnection into words — it’s like being at the bottom of a well or underwater. One blog reader said it was like being wrapped in cotton. Whatever the best metaphor is, the sensation of being separate, apart or disengaged is one that many people with chronic migraine seem to share. That was my normal for so long and, while I knew I felt that way, I didn’t know just how removed I was. I’ve been trying to practice mindfulness and presence the last six years without actually having the ability to be fully present.

I’m adjusting to this new normal. It’s exciting and nerve-wracking, familiar and strange. There’s no guarantee I will continue to feel this good indefinitely, so I’m trying to enjoy this time without getting too far ahead of myself. Mostly I’m letting my days unfold organically and approaching all these changes with wonder and awe.

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The Silencing Effect of Chronic Illness

“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)

And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.

I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.

Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.

The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.

It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.

It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.

Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.

 

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Emotional Whac-A-Mole (Plus Lots of Untethered Anxiety)

After my therapist noted that I was emotionally shut down, particularly when talking about certain topics, I read Depression Part Two from Hyperbole and a Half with trepidation, wondering if I was once again in a depression without realizing it. Fortunately, my fish aren’t dead, they’re just hiding from me.

The last couple weeks have been filled with emotional Whac-a-Mole. An emotion pops up, but as soon as I notice it, it ducks underground again. They disappear so quickly that there’s no chance for me to knowingly knock an emotion out. When I described this to my therapist, she said to think of it as a subconscious protection mechanism (though she didn’t use those particular words). To keep myself from being overwhelmed by emotion, especially when a migraine attack commands my attention, I unwittingly developed a strategy to protect myself.

By far, anxiety has been the most prominent emotion I’ve had since starting therapy. It was free floating until my last session. Since then, “What is happening to my skin? Where is that protection when I need it?,” which are lyrics from another Talking Heads song, have been running through my mind. They so perfectly articulate my fear that returning to the world of emotional experience will mean peeling off my skin, exposing every nerve ending to the sadness of the world.

Thus far in my adult life, I’ve either been emotionally flayed open or closed off. I didn’t know it was possible to experience an emotion without being carried away by it, nor did I know I could choose to feel an emotion or distract myself from it. While I now know this is possible, I don’t yet have the skills necessary to manage my emotions. I first have to learn how to feel and sit with them. It is slow going, for sure, but I no longer feel as if I have to climb Mt. Everest yet again. I am seeing it more as a process, removing layer after layer to get to the heart of the matter.

I drafted this post last Thursday, the day after my last therapy session. I’m pleased to say that this week has been much less anxiety-ridden. I now trust that I can be open to emotions without being flayed open. Interestingly, I’ve also begun thinking of the work I’m doing in therapy not as monumental effort or even removing layers, but as the normal work of life. It has already become easier to notice and experience my emotions. They still hide quite a bit, but I’m definitely seeing progress from week to week. This afternoon is another therapy session… wonder what I’ll find today.

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Chronic Migraine’s Isolation and Emotional Torment

When the worst migraine I’ve had in months coincided with an overnight visit from a friend, I was overwhelmed by how incredibly alone I felt, even when surrounded by friends. In The Isolation of Chronic Migraine, a post I wrote about that night for Migraine.com, I said:

The isolation gave me a sense of physical emptiness. It was as if I wasn’t even there — like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally. (Read the whole post here.)

My friend visited last Thursday. Although I haven’t felt isolated like I did that night again since then, the memory of when my migraine attacks were at their worst has continued to haunt me. In those days, I felt disconnected all the time. Like the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me. No one, not my friends, family, or even my husband, could get through it.

Much of this time was when I lived in Seattle. In my bedroom there, the closet took up one long wall, but the doors were a regular closet door width. This left a nook that was difficult to access. I used to lie in bed and fantasize about curling up in that tight space, where I could be comforted by the darkness and the enclosure. I don’t think I ever did it — it seemed a desperate move, like doing so would mean I was millimeters away a psych ward — but I do remember sitting on the floor in the tiny spot between the bedside table and the wall. Even there, migraine wouldn’t leave me, and the sense that I was disappearing from the world was magnified by the knowledge that I took up so little physical space.

Thankfully, those days are behind me. I say this not only because I’m on some preventives that reduce the severity of the migraine attacks, but because I don’t think I will be able to disconnect like that again. Since those days, I’ve allowed my friends to be around me when I’m in a bad migraine attack. I’ve let other people see what it can be like and have spoken about it more openly. I used to close off as soon as someone asked me about migraine, as if acknowledging it would make it more real. Now I answer questions readily and have described the experience to non-migraineurs. I have written about those times and how close I was to suicide.

Then again, it is easy to say I won’t get to that point again on a day I’m feeling better. Last Thursday night was scary both for the emotions I felt and how reminiscent they were of worse days. I am far more connected than I was a few years ago, but, truthfully, I’m still detached. I haven’t returned to calling friends and family for no reason and am nowhere close to being as social as I once was. I’m not in massive pain all the time, but I still have a migraine nearly every day. I’m physically and mentally exhausted much of the time. My emotional and physical strength are stretched taut in  support of myself; my ability to care for others comes in small, unpredictable bursts.

Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine. Despite all the explaining and writing I have done, I still cannot capture the bleakness and alienation I have felt. The physical sensations of chronic migraine are horrendous, but the emotional torment may be even worse.

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The Physiology of Migraine Mood Swings

With a range including euphoria, high sexual interest, high energy, depression, irritability and lethargy, mood swings are among migraine’s more bizarre symptoms. I knew they were related to serotonin, but never really understood the physiology until I read this fantastic post by Pam Curtis on Make This Look Awesome. In addition to describing the biology of migraine mood swings, she provides excellent ideas for coping with them.

Pam explains that following an initial surge in serotonin (responsible for a pre-migraine “high” or panic attacks), “the body loses all serotonin. It loses it’s supply in the blood, it loses it’s supply in the brain,” thus downshifting the brain into more troubling emotions. After providing further detail and citations, she points out that:

“It’s completely normal to expect with all this wacky brain chemistry going off, that besides the pain, there’s going to be an emotional component. (Pain, itself, provides its own emotional components, triggering “fight or flight” emotions such as aggression or apologizing.) There are going to be mood swings as there are brain chemical swings. And since all this also kicks off the autonomic nervous system by causing physical stress on the body, the migraineur’s ability to handle external stress is taxed.”

This brief excerpt is an insufficient glimpse at Pam’s post. Do yourself a favor by reading the entire piece.