By

A(nother) New Normal

Hi there. Sorry for the silence. It’s been a rough month migraine-wise. My attacks have gone from happening immediately after being exposed to a trigger to building slowly over hours. I’ve had trouble keeping up with the change, which has meant the migraine attacks are more frequent and last longer. Also, my symptoms appear to be changing. The pain location has changed and fatigue has been my primary symptom. I think I’m getting things sorted out now, but it’ll take a while to settle into this new sense of normal. And please don’t worry—the attacks don’t appear to be getting any worse, they’re just different. Different is strange and uncertain, but not necessarily bad.

I’m sorry for falling behind on writing and responding to comments and emails. I know you understand, but hate leaving anyone hanging. I’ll be back as soon as possible.

By

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

By

Sensitivity to Drug Side Effects Increased by Migraine Attack

Nine days of dizziness following four days of migraine. That’s what I’ve been up to these last two weeks.

The migraines made sense. We had rainstorms that week and I’d blown off my diet a couple times. The dizziness, however, was surprising. Wellbutrin has been to blame every time I’ve been dizzy in the last 16 months, but it didn’t make sense. I haven’t changed my dose in a few months months. I’d eaten plenty before taking it each time and hadn’t missed a dose. Maybe I accidentally took too much one day? I skipped a dose intentionally, took it at different times, took 300 mg instead of 450 mg. When the dizziness did lessen, the reprieve never lasted long. It was as if the migraine attack had made me more sensitive to Wellbutrin’s side effects.

It seemed unlikely that one migraine attack would change how I reacted to medication I’ve been on for more than a year, but my headache specialist told me he’s seen it happen with other patients. As he put it, the brain you have after a migraine attacks is not the same brain as you had before it. Any medication that acts on the central nervous system, like antidepressants, could interact with this new brain in a different way than before, causing an increase in side effects. My dose hadn’t changed, my brain had.

The changes to your brain after an attack are not permanent, so please don’t let this scare you. It’s more like a storm with high winds came through and there’s still dirt and debris in the street. The street sweeper will get to it eventually, but it may take some time. (I live in a place with haboobs and dramatic thunderstorms. You can liken it to a snowstorm if that’s more familiar.)

I’ve been taking 300 mg of Wellbutrin for the last week. Today I can look at the computer without feeling like my head is melting as if in a psychedelic video, but I still have to be careful to minimize the chance of side effects whenever I take a dose. My fingers are crossed that this part of the change to my brain lasts and that I can keep the depression at bay on this lower dose.

My naturopath/therapist believes that my depression is directly tied to migraine attacks. Since I started seeing her almost two years ago, every increase in depression has followed a long migraine attack that didn’t respond to acute medications. This fits with my headache specialist’s explanation. I haven’t waited to see if the depression abates without medication, but I wonder if it would. Not enough to find out, but I will ponder it.

My fingers are crossed that I have the internal mess from this latest storm cleaned up. Now it’s time to attend to everything I haven’t been able to attend to while weathering it. I’m going to read and approve a slew of comments now, but it will take me a while to respond to all of them.

By

Migraine Mood Changes: Don’t Believe Everything You Think

It’s been a long time since a migraine destroyed my mood like it did Tuesday. It was a scary reminder of the dark thoughts that accompany migraine mood changes.

I was fiddling with a picture for a post and minor frustrations had me nearly in tears. Hart fixed the problem while I sat beside him, closed my eyes and took deep breaths. My mind jumped from Photoshop to “Why can’t I get this diet figured out. What am I supposed to do when a food is OK on one day and then not the next time in the rotation? How am I supposed to eat anything? What if I don’t get it sorted out and the migraines come back full force? I don’t want to do that again.”

As my mind spiraled in fear, I reminded myself to not believe everything I think. Those thoughts I was having? They aren’t Truth, nor do they represent what I believe most of the time. I told myself, “This is migraine. This is migraine. This is migraine. This is not me.” Within minutes of remembering the critical distinction between me and migraine, all the anxiety and frustration melted away.

Then I was amazed at how far I’ve come. When a migraine hijacked my mood even a couple years ago, I’d respond by dwelling on every dark thought that crossed my mind. Now I know to shut down those ruminations because they hurt far more than they help. Realizing I’ve learned to pay diligent attention and respond to all the minute migraine-induced changes (mood and otherwise) fills me with gratitude and pride.

Through much research and work, I’ve made tremendous strides in my physical health. I have worked just as hard at changing the way I react to and cope with migraine. As proud as I am of the first achievement, the latter may be even more meaningful. While my physical improvements may not last (in fact, I’m having all sorts of food issues and averaging two migraines a day right now), I can always rely on the strategies I’ve learned to ease the burden of living with chronic migraine. As the saying goes, I can’t control migraine, but I can control the way I react to it.

By

Chronic Migraine Rule #12: Always Bring Ear Plugs

  • Talking
  • Gum popping
  • Feet shuffling
  • Two TVs blaring
  • Pagers beeping & vibrating against tables
  • Six people typing
  • Dialing on speakerphone
  • Phones ringing
  • Printers printing
  • Automatic doors clunking
  • An automatic stapler thunking
  • Sniffing

This is the cacophony I sat with for 45 minutes in a hospital waiting room this morning. The ear plugs that I always, always carry with me? Nope, not in my bag. Fortunately, I only had a migraine hangover, so I wasn’t as extra-super-sensitive as in the pain phase. Still, negotiating the world with migraine is hard enough without getting caught without necessary supplies. I restocked the ear plug supply in my bag immediately upon returning home.