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Redefinition is a Nightmare, Yet the Essence Remains

“This is not what they signed up for, not at all. . . . Redefinition is a nightmare — we think we’ve arrived, in our nice Pottery Barn boxes, and that this or that is true. Then something happens that totally sucks, and we are in a new box, and it is like changing into clothes that don’t fit, that we hate. Yet the essence remains. Essence is malleable, fluid.” Anne Lamott, A Slow Walk into the Amazing Now

Anne Lamott’s writing has hit me straight in the heart once again, this time in an essay about a friend who has ALS. Usually I’d add my reflections, but this doesn’t need much. Almost everyone reading these words knows that redefinition is a nightmare — a gut-wrenching, life-twisting, heartbreaking nightmare that feels like it will destroy the very essence we hold dear. Amidst that, it’s difficult to see that one’s essence not only remains, but is stretching toward the light and growing ever stronger.

I spent many years lost, not knowing who I was under the onslaught of chronic illness. I mourned for my lost self, sure I’d never see her again. Even though I couldn’t see it, my essence was still there. It was, in fact, what carried me through, changing in the ways necessary to keep me going. In this year that I’ve had remarkable physical improvement, I still haven’t seen the Kerrie I used to be. That’s OK. I like this redefined version so much more.

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Wellbutrin Side Effects

Dizziness is one of Wellbutrin’s most well-known side effects, one with which I’ve become intimately familiar. Since I know I need an antidepressant right now and refuse to take any with sexual side effects, I’ve become experienced in managing Wellbutrin side effects. In addition to dizziness, I’ve had some trouble with insomnia. This information stems from dealing with those problems, but it may be helpful for other side effects, as well.

The main points:

  • Try different release types
  • Take the meds with food
  • Try different ways of taking different dosages (example: for 300 mg, take 200 in the morning and 100 in the afternoon or vice versa)
  • Try generics from different manufacturers
  • Try the name brand drug, if possible

Wellbutrin (generic: bupropion) comes in regular release, sustained release (SR) and extended release (XL). I started on 200 mg of the generic sustained release. My diet is heavily restricted, so I don’t eat many calories at once and eat few carbohydrates, both of which seem to make me more susceptible to dizziness. I could manage as long as I consumed 800 calories before my first dose and took the second dose six hours later.

Then I increased my dose to 300 mg a day, which added insomnia to the dizziness. If I took 200 mg in the morning, I got dizzy and stayed that way all day. Taking 200 mg in the afternoon caused less dizziness, but made it difficult for me to fall asleep and stay asleep.

So I switched to 300 mg of the generic extended release, taken in two 150 mg tablets with breakfast. I still had a little bit of dizziness, but it was pretty mild, and no trouble with sleep. Then I started taking the 300 mg in a single tablet and wound up with intense dizziness that even kicked up when I rolled over in bed.

The question is whether I did better with two 150 mg tablets because there were two pills or because they are manufactured by a different company than the 300 mg tabs. I’m guessing the latter since generic drugs have the same active ingredient as name brand drugs, but the other ingredients may differ and, thus, may have different side effects.

Which leads to what will be my next experiment — taking two 150 mg tablets of Wellbutrin XL, the brand name extended release version. If my insurance company approves it, I’ll let you know how the experiment goes.

(And now you know why my posts have been sporadic and I’ve been slow to respond to email and comments the last few months. Computer time is the first thing to go when I’m dizzy. Today it feels manageable; we’ll see if that lasts.)

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Re: Migraine Hell (An Important Distinction)

When I wrote about “migraine hell,” it was a rhetorical device. Despite the play on Winston Churchill’s words, I did not feel like I was in hell all the years of severe chronic migraine. This distinction may not seem like a big deal, but it’s very important to me.

One of the greatest accomplishments of my life thus far is that I sought to live a fulfilling, meaningful and happy life with debilitating chronic migraine. I didn’t always succeed, and sometimes I was just too sick to try. Sometimes I did feel like I was burning alive for months on end. Most of the time, though, I was able to see at least a little good. When I couldn’t, I (eventually) realized my emotional turmoil was adding to the physical symptoms and knew I needed to improve my outlook. (That’s what was going on when I began “three good things.”)

I definitely had times I felt like I was in hell. And times I believed I would never find relief. But I balanced those with a fierce dedication to living as good of a life as possible, even if it was a life spent in bed. This was a choice I made and tried very hard to stick to, even though it sometimes felt impossible. It is a choice I believe kept me alive.

So, yeah, it’s a big deal that I make the distinction.

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It’s Official: I’m No Longer in Migraine Hell

I stood in tree pose at yoga, my arms raised in a V above my head, and nearly cried tears of joy. “I am strong,” I thought. “I am alive.”

No words suffice as I try to describe that moment. I keep typing and deleting, typing and deleting. My thinking is huge, philosophical, emotional.

“When you’re going through hell, keep going.” That Winston Churchill quotation has gotten me through many years and countless migraine attacks. I haven’t had to apply it to my life in a year. I call that remission from hell and officially declare that I am no longer engulfed in flames.

I still have constant head pain and migraine attacks more days than not. Fatigue, brain fog and depression still nag at me. I may one day return to symptoms as severe as during The Worst Year of My Life. I may, in fact, return to hell. But I’m not there right now.

Acute medications are working. The diet is irritatingly restrictive, but combined with DAO, it means I no longer get a migraine every time I eat. I can even occasionally choose to eat foods that will trigger a migraine, then stop it with a triptan and naproxen.

It’s not perfect. I’m not cured. But I can breathe.

My life feels wide open.

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Migraine Attack “Coulds, Shoulds & Woulds”

“All you have to do for the next few minutes is just be,” instructed the yoga teacher as we settled in for the end-of-class meditation. Instead of leading me into meditation, this guidance started me thinking, What would happen if I let myself just be during a migraine?

What if, instead of thinking about everything I should or could or would be doing, I allowed myself to be in the migraine. I don’t mean to wallow in the migraine or dwell on it, but let it be what I’m doing in that moment. If I were at dinner with friends or at a yoga class, I wouldn’t be thinking of my to-do list. Even though a migraine attack is unpleasant, unplanned, and unwanted, there’s no requirement that I stew and ruminate through it.

To be clear, I wouldn’t just be lying around, hanging out with the migraine. I could read or watch a movie, take a nap or talk with Hart — whatever I need to do to take care of myself. The point is to not think about what I’d be doing if I didn’t have the migraine, but accept that fact that I have it and make the best of it.

Much of the frustration during a migraine comes from obsessing about what I’d rather being doing. This fruitless churning doesn’t make the migraine stop sooner or take care of any chores, it just upsets me. Why not sidestep the frustration and aggravation by giving myself permission to just be?

This isn’t always practical or possible during a migraine, of course, but I can at least try it. Maybe the lack of fighting, the lack of stress will help the migraine pass more quickly and I can get back to my life a little bit sooner than if I’d obsessed over how much I was missing.

Since I drafted this post 18 months ago, I’ve put just being into practice. The transformation is amazing. Even when the symptoms are bad, attacks are way less stressful. Jon Kabat-Zinn advises, “You can’t stop the waves, but you can learn to surf.” I’m still wobbly, but I think I’ve learned to surf.