The courage of vulnerability

Courage

Today’s prompt: Watch The power of vulnerability by Brené Brown. How can you use what she says to help you put your dreams into perspective that leads to action?

The road to belonging and happiness starts with vulnerability. Impossible to be our authentic selves without vulnerability. Brown explains it like this,

…speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage.

We all want to break the stigma that follows headache disorders. However, the only way to challenge people’s perceptions is to give them a glimpse into the reality of our fight with headache disorders. This can be frightening and embarrassing. Because I believe in leading by example, I’d like to take today’s challenge as the opportunity to be truthful and vulnerable first.

Below is a photograph I never thought anyone would see. However, I took it because I thought it was important to have a record of what it is like to experience a cluster headache. This was taken in the early moments of an attack.  Ice and heat make the pain worse, so I can’t treat a cluster attack like I do a migraine. The vibration of this hand-held massager helps to dull the pain while I prepare my oxygen tank and mask.

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The next photo is of me using my O2ptimask and O2 tank to abort an attack.  If you look closely, you can see that my eyes are watering and bloodshot. You can also see that my forehead is wrinkled up in pain.

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This is me at my worst. Nothing I have experienced comes close to the agony of a cluster attack. I can’t sit still. I stop caring about what I do or say. I break out in a cold sweat and am unable to control the urge to take off my clothes.  I pace, rock, bang my head, and curse unrestrained. This can go on for up to 3 hours, ease up for 15 minutes, then start all over again as often as 3 or 4 times a day for up to 5 days every other week.

There is no cure for cluster headaches. The treatments are minimally successful and full of side effects. Prednisone can sometimes break a cycle, but it causes weight gain, insomnia, anxiety, poor thinking, restlessness, increased appetite and cancer if used too often. Verapamil is frequently used as a preventive. It can cause constipation, fainting, vertigo, low blood pressure, and heart blocks. Patient must have frequent EKGs to make sure the heart is coping well.  Topamax is also used as a preventive. It can cause glaucoma, kidney stones, dehydration, electrolyte imbalances, memory loss, and cognitive impairment. The one bright side is that high-flow oxygen is an effective abortive for most patients. When used properly, it is very safe.

Here are some examples of the stigma I face as a result of cluster headaches:

  • When they see my O2 tank, people assume that I have COPD as a result of smoking.
  • Because the attacks usually happen in the early morning hours, I am rarely out in public when one starts. As a result, people assume I am exaggerating the intensity of the pain.
  • Because I also experience migraine attacks, doctors and lay people assume these are “just migraines” and can be treated like a migraine.
  • Bright and flashing lights are strong triggers so I often wear sunglasses or shield my eyes from flashing lights. I get accused of “attention-seeking”.
  • People (including my family) have trouble understanding how someone can be in that much pain yet no doctor can find the cause or fix it. Many times I am forced to respond to, “Have they found out what’s causing those yet?” No answer ever seems good enough.
  • Early on, few doctors would accept the diagnosis because I am female, non-smoker who doesn’t drink and has never used illegal drugs.  Many doctors still believe that only male smokers who drink excessively and/or use street drugs can get cluster headaches. It is viewed as a problem that is caused by patient misbehavior. Patient-blaming is rampant.
  • I have to take a lot of supplements and preventive medications in order to keep these attacks under partial control. Without these treatments, I would have attacks almost every day. Many people have accused me of “taking too many pills” or lecture me about changing my diet. I have no dietary triggers for cluster headaches. My triggers are bright flashing lights, loud sounds, chemical smells (tar, asphalt, incense, bug and weed killers, gasoline, burning wood, etc.), and alcohol.
  • When oxygen fails, I must seek emergency medical help. The first thing the nurses do is hook me up to their oxygen at a super-low flow rate with a crappy mask that leaks and then get frustrated when I tear it off and ask for a IV. They think I am being uncooperative and drug-seeking. What I want and need at that point is IV Solumedrol (steroids) and Dilaudid. Nothing else works. I scream, curse, cry, and am otherwise a “bad patient” when in reality I have absolutely no control over my behavior. I am so delirious with pain that I must have an advocate with me to explain what I need.

Whether it’s cluster headache, migraine, or some other headache disorder, we all experience our own form of torture. The only way to fight stigma is with the unadulterated truth.

Do you have the courage to show the world what you are really like in the middle of an attack? 


The 2014 Migraine and Headache Awareness Month, is dedicated to Dreaming of a World without Migraine and Headache Disorders. The 2014 Migraine and Headache Awareness Month Blog Challenge is a project of American Headache & Migraine Association.


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