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Identity Loss, a Chronic Migraine Symptom

“Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through.”

This excerpt from Friends, Family & Illness, a January 2007 post, hit me hard when I re-read it. I stand by the assertion that my faults are in plain view because chronic illness takes all the energy that might otherwise go toward hiding them. What I take issue with is the list of my “faults.” These are not faults, nor are they inherent to being me. They are all the factors of having debilitating chronic migraine.

Six-and-a-half years ago, migraine had completely obscured my sense of self. What I called selfish was me desperately trying to take care of myself and reduce the ravage of migraine on my life. Insecurity about bizarre things? That was keeping the pretense of health when I was terribly ill. Not following through? Following through on promises to others is hard to do when you’re so sick that getting to the bathroom and feeding yourself are your main priorities in a day.

My health had been in steady decline for, oh, 20 years before I wrote that original post and in free fall for at least five. I was a few months from adding constant, severe nausea to my list of symptoms. I hadn’t yet reached my worst, most debilitating years of migraine, but they weren’t far away.

At the time, I was aware that I was floundering in search of my identity, which I thought was buried under migraine. Now I see that I was trying so hard to retain a semblance of self that didn’t include migraine that I perceived myself as someone I wasn’t, nor had ever been. I was trying so hard to pretend I was normal despite the constant seismic activity in my body that I completely lost sight of who I was.

Identity loss. Now that’s an aspect of chronic migraine that doesn’t even make the other migraine symptoms lists, but it caused as much upheaval as the pain and nausea ever did.

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Weaning Myself Off Antidepressants

Exciting news: I’m off all antidepressants for the first time in eight-and-a-half years! Going off them has been s-l-o-w going because I haven’t been willing to put up with any withdrawal symptoms, which even my doctor’s modest titration schedule resulted in. While I would never advise anyone to adjust their antidepressants without a doctor’s supervision, I’m sharing how I avoided withdrawal symptoms in case it helps anyone in a similar situation.

Wellbutrin was the easiest. I was taking four 100 mg tablets each day and cut back 100 mg every few weeks and had no symptoms.

Lamictal was next. I had a backlog from a mail order prescription, so instead of getting a prescription for a lower dose, I cut the tablets into smaller and smaller pieces as time went on. If I felt withdrawal symptoms, I’d take another small piece, effectively increasing the dose. It took me a couple months before finally stopping.

Cymbalta was the difficult one. With a starting dose 60 mg, even reducing by 10 mg was too much for me. My solution was inelegant and imprecise — and not medically recommended: I opened the capsules and counted out the pellets inside, subtracting a greater amount each week. Having a pharmacist divide the meds or, at the very least, using a scale would have been smarter, but I had another accumulation of meds from a mail order prescription, was impatient, and didn’t want to buy a scale just for this purpose.

It took some fiddling to determine the right amount to decrease by and how frequently to do so. There were about 220 pellets to begin with. By the time I got to 120, I was opening each capsule and counting up instead of down. I’d drop by 10 pellets every week. When I was down to about 50 pellets, I started dropping by five pellets every five days. The whole process took more than six months, but I did it with no increase in depression-like symptoms and no other withdrawal effects, like brain zaps, wooziness, or dizziness.

After a week being off all the drugs, I wrote: “I’m a little more teary — both sad and happy tears — though I find it hard to believe that five pellets of Cymbalta can really make a difference. Maybe I’m more emotive because of the work I’ve been doing in therapy. Or maybe my emotions are no longer dulled by drugs.”

Now that a couple more weeks have passed, I’ll admit that I definitely feel more non-specific sadness, a sort of generalized depression, than I did when I was on the meds. This could be a recurrence in depression symptoms or withdrawal symptoms. Again, it seems strange that going from only five pellets of Cymbalta a day to none could be the culprit in either case, but even just five pellets are the difference between some and none.

According to this Harvard Women’s Health Watch newsletter, if you take a dose of the medication and the symptoms stop immediately, it’s withdrawal and not a recurrence of depression. I finally gave in and tested this today. With only five pellets, the generalized sadness that’s been plaguing me lifted within a couple hours. So I may go back to taking a few pellets a day. I’d prefer to be off it entirely, but I’d much rather be on the drugs than slip into another depression.

Lest you’re worried about me, know that I’m being vigilant, tracking my mood carefully, and am keeping my therapist/naturopath updated on my symptoms, so I don’t relapse. I’ve been on antidepressants most of my adult life and really want to know what I’m like without them, especially now that I have tools for dealing with emotions that I’ve never had before. Still, I’m not willing to risk a slide into depression to find out, so I’m being extremely cautious.

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Is it possible to validate one’s pain and still live a life beyond bed when you’re chronic?

“Short and simple, Validating Your Pain is the First Step to Getting Stronger by Danielle LaPorte is astonishingly powerful in its approach to pain,” I wrote yesterday. My first instinct was to tell you it is an absolutely must-read article for anyone with chronic illness. I even wrote, “Read it now. Right now. Really.” Then I let the ideas simmer for a while and began to question how they could realistically apply given the constraints of chronic illness and pain.

Head on over and read the post. It’ll only take a couple minutes and the ideas are intriguing. Then come back to read what I’m thinking about it and share your impressions.

I love, love, love the thought that people with chronic migraine, including me, might stop denying the reality and severity of this illness to everyone around them, even themselves. Pushing through despite our debilitating symptoms, pretending we feel better than we do, brushing off others’ concerns. . . These strategies seem like the only way to survive, to have some semblance of a life while also having chronic migraine. But they also lock us in a battle against ourselves, where we’re constantly denying how we truly feel physically and emotionally.

“Validating your pain is the first step to sanity, strength, and healing,” LaPorte writes. My therapist has expressed a similar message. I’m listening. And I really want to buy into what they’re saying. Yet, I cannot help but wonder how to follow their lead and still get anything done. Three of LaPorte’s points tied my mind in contradicting thoughts of “That would be amazing” and “How is that possible?” They are:

Endurance can be a very unwise choice. As inevitable as emotional and physical suffering is, it doesn’t always serve to make us stronger — sometimes it just wears you right down. Sometimes, the test of strength is to say “This isn’t working,” the millisecond it’s not working.

Believe your pain. It’s not a friend you want to invite over, but when it does show up, it always — always — brings you precious information about what’s best for you.

Dare to be high maintenance. I bet you’re invincible in many areas of your life. But when you need it, ask for special treatment.

It is a good time to note that LaPorte does not have chronic pain, but extreme sensitivity to dental work. She’s talking about validating her pain a couple times a year. Applying her ideas to the daily life of chronic illness is so seductive. Imagine recognizing (and stopping) every time you’re wearing yourself down by trying to push through, listening to your body’s signals and resting accordingly, asking for special treatment. Sounds blissful. And utterly inconceivable, a life-sentence of confining yourself to bed.

Still, I want to believe that these concepts can apply to some degree and improve life with chronic migraine. I want to validate my pain and listen to my body, ask for help when I need it. For LaPorte, honoring her body and her needs leads to an effective treatment for her pain. Many chronic migraineurs don’t have the luxury of surefire way to manage their pain, nausea, dizziness, vomiting, photophobia, and numerous other migraine symptoms. Admitting our pain doesn’t get us a numbing agent, it just takes us away from living our lives.

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Migraine Can Be Life-Threatening

A young woman who had chronic migraine “took her own life,” I told you Saturday. Originally, I wrote that she had “committed suicide,” but changed it after being told the mental health community prefers the phrasing “took his/her life” because “committing suicide” sounds like a crime. The corrected phrasing doesn’t sit right with me either because chronic migraine took her life as she knew it. She chose suicide over living with extreme disability and a severely diminished quality of life from an illness that few people take seriously.

The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent.

What causes some people to hang on and others to choose suicide is a mystery to me. I have been desperately searching for a way to help suicidal migraineurs. Perhaps the best I can offer is a variation on something Hart told me the last time I was suicidal: Life with chronic migraine is extraordinarily difficult, but that doesn’t mean it is worthless. That and a success story, as I found my first helpful preventive (after more than three dozen unsuccessful meds) two weeks after Hart reminded my of my life’s worth.

When I shared the news of this young woman’s death on my private Facebook page, a non-migraineur friend said that anyone who dies from suicide because of an illness should be considered as having died from that illness. I’d never thought of it that way before, but I absolutely agree. Migraine is not thought of as a life-threatening illness. This young woman’s suicide is a tragic reminder that it can be.

If you are considering suicide, please, please contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

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Suicide and Chronic Migraine

A lovely young woman with chronic migraine whom I met in an online forum has just taken her own life. She had a smile that could light up the world. And she was in tremendous pain for which she saw no end.

Though I didn’t know her well, this young woman’s death has hit me hard. I am sad for her family and friends, and my heart breaks to know how many other chronic migraineurs have felt similarly desperate.

I think of all the people whose episodic migraine attacks have slowly morphed into chronic migraine. So many of us try countless treatments before finding any relief. Our migraines worsen year after year while we try medications with sometimes unbearable side effects. When you’re mired in that much pain, both physical and emotional, you cannot conceive of a life without migraines that continue to escalate in frequency, severity, and duration, destroying what little quality of life you have left. (I know, I have been there.)

Combine having to face each day when your life is in ruins because of migraine with a society that does not understand how ravaging migraine can be. Migraineurs are regularly told that “it’s all in your head” or “it’s only a headache.” We are called weak or fakers. People tell us all we have to do is think positively and our migraine attacks will go away. There is so little sympathy or empathy for those struggling with migraine.

June is Migraine and Headache Awareness Month. I’ve been caught up in my own life and haven’t been on top of spreading facts or writing blog posts. This young woman’s tragic death has reminded me just how vital it is that we raise awareness about this devastating illness.

Too many people suffer horribly from migraine. Too few people know the tremendous damage it can cause. How many more bright, shining stars must the world lose before people begin to understand the cost of chronic migraine?