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It’s Hard to Believe These Are Migraine Symptoms (But They Are)

Working on an Migraine.com article about all the migraine symptoms that most people have no idea are related to migraine reminded me of the list of symptoms I made for my internist in 2008. The list of all the weird things happening in my body that seemed to have no explanation was more than a page long. My doctor had no idea what they could point to. Now I know that, except for cold sores, they were all migraine symptoms.

I’m a little uncomfortable sharing such a private list, but I think it’s important to show some of the possible varied and strange migraine symptoms, as well as how severe migraine can be. Most of them are direct migraine symptoms, but some were a result of migraine symptoms (like tingling arms, which was part of a cascade of physical reactions due to constant neck pain that ultimately resulted in pinched nerves). Certain symptoms were so normal that I didn’t even think to include them on the list, like tooth sensitivity, earaches, eye irritation, or neck pain. Others were such common migraine symptoms that I didn’t mention them. Still others I was embarrassed to reveal, like hallucinating sounds.

It’s odd to think that we can be in our bodies and still not be able to figure out what’s going on or dismiss the signals that something’s not working right. But we do it all the time. I have lived with chronic migraine for the vast majority of my life and have been writing about it for nearly 10 years. Still, it’s only been in the last year that I’ve been able to connect the last of these weird symptoms to migraine.

This list doesn’t represent all of my symptoms or even the worst I experienced, but they came shortly after the turning point when my illness went from bad to terrible, in June 2007. My symptoms continued to worsen for another 2.5 years. I lived it and still have trouble believing how incredibly sick I was. It’s no wonder people without migraine have no idea how severe this illness can be.

Symptom Summary for Kerrie Smyres, 4/7/08

ACUTE

Nausea

  • Current biggest concern
  • Increases over first hour each day
  • Food usually decreases for 1-2 hours

Feeling faint, lightheaded, blacking out (also chronic)

  • Worsened by standing up, exercise
  • Blackouts (either last less than 30 seconds or until I wake up)

Vertigo

  • Usually mild; moderate
  • Diagnosed with Meneire’s without hearing loss, 2000

Sensitivity to exertion/exercise

  • Walking a half mile = feeling faint, lightheaded, exhausted
  • Gentle yoga triggers pounding headache

Fatigue

  • Bones feel heavy and tired
  • Nap 3 hours/day at least 5 days/week (from 2 hours a year ago)

Meltdowns

  • Become unreasonable, irritable, exhausted
  • Get lightheaded, woozy
  • Often no obvious trigger; sometimes triggered by hunger, bright lights, crowds

Other

  • 15 lb. weight loss since June 2007
  • Night sweats, chills, shivering
  • Hands, arms tingle 3-5x/night
  • Can’t get workspace bright enough when lighting was once fine (in kitchen, at desk)
  • Whooshing in ears, like blood pulsing; worse during migraine
  • Vision bounces/pulses always; worse during migraine
  • Sudden decreased hearing & ringing in left ear; my voice echoes
  • Canker sores, cold sores
  • Heat intolerance
  • Hand tremor
  • Constipation
  • Nasal congestion
  • Constant thirst, drink 100-150 oz water/day

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A Cold? Nope, Migraine.

You know that cold that gave me brain fog and fatigue as bad as with my worst migraine attacks? It was migraine. While the mild cold lasted only a few days, I simultaneously developed a reaction to one of my “safe” foods (likely cauliflower). It was triggering migraines that were lower on the pain scale than usual since I’d restarted Ritalin as a preventive. Since I ate cauliflower daily, sometimes multiple times a day, I was in a pretty much perpetual migraine.

I’m getting it sorted out, but am also pushing to introduce new foods to my diet so this doesn’t happen again (it has also happened with coconut and butternut squash). That means more migraines as I find out what’s OK and what’s not and what rotation schedule my foods need to be on. It’s annoying and frustrating, but I’ve got a good plan in place and trust that if I’ve figured this out before, I can do it again.

I’ll probably be quieter than usual for a bit, since my mind isn’t cooperating with this writing thing right now. I am reading a ton, including lots of health-related non-fiction that I’m eager to tell you about. Take care of yourselves. I’ll be back soon.

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A Mindfulness Intensive

I’m on day 11 of a cold that has my brain fog and fatigue at levels equal to my very worst migraine days. The other symptoms aren’t too bad, but I can’t think and I can barely move. The longer it goes on the more tempted I am to freak out —

What’s going on? Is this my new normal? Will this ever go away? Are these migraine symptoms resurfacing? Is the DAO not working as well as it did? Was what I thought was a minor cold the start of chronic fatigue syndrome? Could I have fibromyalgia?

Letting these worries spiral out of control isn’t improving my physical symptoms and it certainly isn’t calming my anxieties. I’m working hard to stay mindful and in the moment. All I know is what I feel right now. I don’t know how I’ll feel next week, tomorrow or even an hour from now.

When the fears take hold, I close my eyes, take a few deep breaths and ask myself what I know: I have fatigue and brain fog right now and for the past 10 days. I have a cold. My head pain and nausea are minimal. I feel better today than I did a few days ago. That’s what I know, everything else is just speculation.

Speculation cannot help me know the future. It cannot, in fact, help me know anything. Rumination is a powerful habit that masquerades as useful and helpful. Instead of being fooled by that deception and getting bogged down by thoughts, I’m practicing being right here, right now. It’s tough. It’s also a tiny bit liberating.

( I hope this unedited missive makes sense. I’ve used all my mental ability to draft this and don’t want to wait to publish it.)

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Debilitating — But Only Moderately Painful — Migraine Attacks

My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.

This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.

I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.

I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.

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Migraine Stream of Consciousness

I’m writing this with a level 6 migraine. That’s the most painful a migraine has been for me in the last 11 months. Although I remember the years when the pain didn’t drop below a 7, regularly hit 8 and 9, and was sometimes so severe I tempted fate and rated the pain a 10, I don’t remember what the pain actually felt like. That’s one of the courtesies of the human body — an inability to remember severe pain. So when I rate my pain a 6, I know it hurts a lot, but also recognize that it can be, and has been, much worse.

In some ways, level 6 pain is more difficult for me to endure than higher pain levels because I’m still fully present. At level 7 and higher I dissociate; I stop being present with the pain. It’s like I leave my body and numb out for a while. I also become less coherent, sometimes even incoherent.

It’s strange to me to be writing a post when I’m at my current maximum pain level. I’m used to associating maximum pain with an inability to think. My thoughts aren’t entirely clear and I’ll likely find mistakes in this post when I read it when the migraine has let up. Still, the words make sense, the sentences are logical. I’m not writing “refrigerator” when I mean “shoe” and I can complete thoughts. That’s partially a function of reduced pain and part that this particular migraine isn’t causing too much cognitive impairment.

In fact, this is what I’d call a “pure pain” migraine. My other symptoms are minimal, but my head is screaming. That classic symptom of migraine pain being exacerbated by movement is also on display. Pain is bad and difficult to ignore, but pure pain migraines are much easier for me to put up with than the energy-depleting, mind-draining ones.

I’m not sure why I’m sharing a stream of consciousness about this migraine attack, other than it’s interesting to step back and examine the experience. I want to be aware of and remember it so I can go back to being grateful that level 4 is my typical max pain level.

I’m also feeling grateful for the efficacy of my current preventives. The migraine attacks are still daily, but a level 4 is nothing compared to even a 6 and is infinitely better than higher levels of pain. Someday, though, the preventives could stop working, a reality that’s never far from my mind. This migraine reminds me what my days could return to. I’m fearful and also furious.

Furious that migraine is highly stigmatized and research is massively underfunded, that every preventive medication was created for another illness and efficacy for migraine was an incidental discovery, that only one novel drug class (triptans) have ever been developed to treat migraine.  Worldwide, 18% of women and 6% of men have migraine; 36 million people in the US alone have migraine. The World Health Organization ranks migraine in the top 20 most disabling illnesses on the planet.

Where’s the effective treatment? Where’s the funding to train headache specialists? Where’s the research that will mean my 16-year-old niece isn’t debilitated by migraine 20 years from now? Who decided there’s no value in my quality of life?

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