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Acceptance, My Best Treatment

This flowed out of Don’t Give Up on Finding a Treatment. It’s the most effective of all the headache treatments I’ve tried — and the hardest to get.

You may be surprised to learn I feel I’ve had success in treating my headaches. I still have pain, mental fogginess, a super sniffer and many other largely unknown symptoms of migraine. Yet I’m full of hope.

To me, hope isn’t about finding a magic bullet. It’s knowing that I can have a full and joyous life despite my illness. Something that I wrote when I first started blogging explains this idea well:

The Anatomy of Hope, by Dr. Jerome Groopman, draws a line between hope and positive thinking. Groopman, an oncologist and hematologist, has treated patients with life-threatening illness for 30 years, many of whom have survived against the odds. The definition of hope that he offers is that “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

The better future he mentions does not require living without disease. Yes, people often overcome their diseases or are able to live without pain. But the better future Groopman describes can also be learning to live joyously even with debility.

Two years ago I didn’t understand the distinction. I am thankful for the time I spent in denial, but am even more grateful that my current version of being positive is rooted in reality. A reality that means I spend more days than I want in bed, but that I’m not emotionally miserable on those days.

I’m not saying that you just have to be positive and your headaches will go away. Nor do I think you can simply decide to accept your fate and go from there. Like all things in life, it’s a process. There’s no timeline to follow, but you will notice that you’ve began to have more acceptance than you once did.

If you want some help along the way, check out The Chronic Illness Workbook and Chronic Illness and the Twelve Steps. Therapists who specialize in chronic illness can also be tremendous help.

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Don’t Give Up on Finding a Treatment

In the last week, four people have told me that while they are comforted to know that other people have similar experiences with headaches and migraines, they are saddened to learn that their headaches may never go away. This is distressing as one goal for this blog is to encourage people to keep seeking relief.

It’s not as impossible as it seems. While I haven’t found a magic bullet for myself, the vast majority do find a successful treatment. Even after you feel like you’ve tried every possible treatment, you have probably only scratched the surface. There are so many drugs and drug combinations that no one has tried them all (including Paula Kamen and me).

Most folks with headache define success as having their headaches disappear. Doctors have a different understanding. A treatment is successful if a person’s headaches are reduced in frequency and intensity by 50%.

Don’t get angry yet. Many people become headache-free, some don’t. No matter how much education and knowledge a health care provider has, they aren’t mechanics. Unlike a car, uniform results aren’t possible. The human brain and body are too complex to expect that.

But you can get relief. Be aggressive, but give new meds time to work — which may be as long as three months. See a headache specialist, not just a neurologist. If he or she is dismissive, tells you your headaches are all your fault, or that there’s nothing left to try, see a new headache specialist. Take supplements that have shown some success for headaches (under the supervision of a doctor).

Visit a sleep specialist, even if you feel like your sleep is fine (advice that I need to follow myself). Getting good sleep can go a long way toward easing headaches. Talk to a nutritionist. Not necessarily about an elimination diet, but about giving your body the fuel it needs. Try massage and essential
oils. Take yoga classes that don’t focus on sweating and breathing hard, but on taking care of your body and nurturing yourself.

You will get discouraged. You will be exhausted. You will be frustrated. Keep trying; wherever “there” is for you, you’ll make it.

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“You Have What You Have — Good and Bad”

“If I ever have kids and they’re upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody has it much worse, that doesn’t change the fact that you have what you have — good and bad.”

This quote captures what I try to say when someone tells me that their suffering isn’t a big deal compared to all the other horrors in the world. It’s been so hard for me to put this concept into words, but Charlie in The Perks of Being a Wallflower says it so eloquently.

Yes, the world is full of disasters and atrocities, and while you shouldn’t ignore these issues, “putting things into perspective” can do you more harm than good. It minimizes what you’re going through and keeps you from understanding and accepting your suffering as real. It also keeps you from mourning the real losses in your life.

Just thinking about what others are going through doesn’t help you or other people. You can’t help the people starving in China unless you help yourself first.

Keeping the tragedies of the world in mind is important too, but it shouldn’t interfere with how you treat yourself. Perspective does keep you from steeping yourself in sorrow forever, but some wallowing is necessary to cope with illness.

Treat yourself kindly. It is not you’re fault that you’re sick, nor are you a bad person for thinking about how your illness affects your life. Most important is that you take care of yourself so you can care for other people more effectively.

I’m writing this for myself as much as for you. Putting myself last is a lifelong behavior, just like for Charlie. I think I’m getting better at being nice to myself, but it’s not my instinct.

If you haven’t read The Perks of Being a Wallflower, I can’t recommend it highly enough. The main character, a 15-year-old in his first year of high school, is astute and charming. The themes are applicable to adult life and the novel inspires thoughts about how the reader’s teen years shaped the adults they’ve become.

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Friends, Family & Illness

The canceled plans, dirty kitchens and general grumpiness that go along with having headaches, whether episodic or chronic, puts strain on even the best of relationships. With all my experience, you’d think I’d have some suggestions for dealing with this, but my brilliant strategy is to feel guilty. Not too productive, I know.

The new blog How to Cope With Pain highlights “family issues” once a week. Last week’s post answered questions that family members might have, like “Is the pain real?” Here’s part of her response:

“Faking pain, on purpose, to get out of something or to get a reward is known as malingering. While it does occur, it’s rare. Most patients feel very guilty about not being able to do the things they used to do, whether working at a job or taking care of their family around the house. Very few patients with pain make more money out of work than working.”

On her blog, migraineur Nicole offers tips for friends of chronics, including: “[P]lease do not decide for us what we can and cannot do. If you are having a party, let us know. Let us decide if we can or can’t make it to the party, movie, or what have you.”

This anonymous letter to people without chronic pain begins with, “These are the things that I would like you to understand about me before you judge me.” It goes on to explain what many chronics wish their loved ones understood.

If your friends are wondering what they can do, direct them to 50 Ways to Encourage a Chronically Ill Friend. Many ideas focus on encouraging the sick person talk about things that most people don’t want to hear about, like the massive changes that illness has brought to their lives. [via ChronicBabe]

What I fight with the most is being honest. It’s much easier to say that everything is OK than to admit that it’s not. When I do have the courage to tell people how I really feel, I worry that I complain too much.

I’ve finally accepted that my friends and family understand the best that they can. I’ve lost a lot of friends along the way. Although hard at the time, I’m better off for it. I don’t have the energy to convince other people that I feel terrible or deal with their insecurities when I cancel or don’t call them.

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. My friends and family accept me for what I can give now — which may be different than I gave three years ago or will give two months from now.

That’s the beauty of love.

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The Many Symptoms of Migraine

Is it just a coincidence that you feel foggy-headed, have to pee a lot and always have dark black circles under your eyes every time you have a migraine? Nope. Throbbing head pain, nausea, sensitivity to light and sound, and weird visual effects are the most discussed symptoms of migraine, but the list is far from comprehensive.

Migraine: The Complete Guide, my very favorite headache book, lists the infrequently discussed symptoms of migraine. I was astonished the first time I saw this list — and relieved to know that I wasn’t a freak of nature. Take a look for yourself:

Prodrome (the period before the pain begins)

Visual (aka aura)

  • a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
  • flashes of light and color
  • wavy lines
  • geometric patterns
  • blurred vision
  • partial loss of sight

Sensory

  • numbness or tingling on the face or upper extremities
  • a sense that limbs are a distorted shape or size
  • smelling odors that aren’t actually present (like natural gas or something burning)

Motor

  • partial paralysis
  • weakness or heaviness in the limbs on one side of the body

Language

  • difficulty finding words
  • problems understanding spoken or written language

Cognitive

  • mental confusion
  • disorientation
  • transient global amnesia (similar to amnesia that follows a concussion)

Digestive

  • food cravings (particularly for carbohydrates, candy and chocolate)
  • stomach rumblings
  • constipation

Fluid disturbances

  • increased thirst
  • bloating/fluid retention
  • frequent urination

Mental/Personality

  • mood changes
  • irritability
  • high energy
  • lethargy

Headache Phase

Sensory

  • sensitivity to light and noise
  • intolerance of being touched
  • heightened sensitivity to odors

Digestive

  • nausea
  • vomiting
  • intolerance of food odors
  • loss of appetite
  • diarrhea
  • constipation

Skin

  • paleness
  • cold, clammy hands and feet
  • facial swelling
  • goose bumps
  • bloodshot eyes
  • black circles around eyes
  • sweating

Fluid disturbances

  • water retention
  • frequent urination

Respiratory

  • frequent yawning
  • sighing
  • hyperventilating
  • nasal congestion
  • runny nose

Mental/Personality

  • irritability
  • depression
  • anxiety
  • nervousness
  • difficulty concentrating

Circulatory

  • changes in blood chemistry
  • changes in blood pressure
  • blood vessel dilation
  • difficulty regulating temperature
  • changes in heart rhythms

Postdrome (24 hour following headache)

Cognitive

  • inability to concentrate

Respiratory

  • frequent yawning

Mood/Personality

  • fatigue
  • depression
  • euphoria
  • feeling of intense well-being
  • lethargy

So you’re not crazy, losing your mind or faking it!

This information is much like that in Not Just a Headache: Migraine’s Other Symptoms, which I posted last December. It’s such an important topic and receives so little attention that I wanted to revisit it.

By the way, Migraine: The Complete Guide is published by the American Council for Headache Education and is a terrific resource for anyone who wants to learn about migraine. It was published in 1994, but the information is so good that its worth getting. And if you buy it through the links in this post, a portion of what you spend will help support this blog.