Spotlight: Baldgirl with headaches

Spotlight: baldgirl with headaches Blog: baldgirl with headaches Blogging since: February 2007 Diagnosis: Hemicranina continua, January 2006 Work: Computer programmer at a college in western Massachusetts.

What is hemicrania continua?

Hemicrania continua (HC) is constant pain, varying in intensity on one side of the head.

How did it start?

It was January 2006. I was doing great daily workouts at the gym, I’d been at my current job for barely six months and was loving it. Then suddenly I was struck with cold, dull headaches several times a week.

In July of that year, I got a ventriculoperitoneal shunt to relieve the pressure, and after that, my pain became constant and burning. The shunt was removed four months later, but the burning pain stuck around.

What’s it like for you?

Living with chronic pain drains me of energy. I barely have a social life. I sleep sitting up because lying down is too painful. I’m in bed by 7. I use my energy to prepare myself so I can work because if I can't work, I don't know what’ll happen to me. I spend too much time thinking about how to economize my life—not just money-wise but energy-wise—so I can do more with the energy I have.

The pain has to be really bad for me not to walk. A two-mile walk is my daily minimum exercise. It helps keep my energy level high. I have to be disciplined, knowing that if I don't follow the routine I’ll pay in pain and fall behind in my responsibilities. I’m frustrated that my doctors, even the ones I like, don't seem to understand the extent to which my pain dominates my life.

Thanks to the drug, Kadian, my pain has lessened. Two weeks of the month are usually mild, one week is moderate and one week is severe. This is if I’m disciplined about doing everything I can to prevent pain. A hot day, the wrong smell or bright lights can change a mild pain day into a severe pain day. It never works the other way around.

What course of treatment do you follow?

My stomach doesn't tolerate the one drug proven to help people with HC, Indocin. Kadian is the only thing that makes a dent in the pain, but it doesn't prevent me from feeling the severest pain. Once I started taking it, I felt like I got part of my life back. I've also been experimenting with different types of birth control pills in attempts to increase my number of mild pain weeks. My pain level seems to be hormone-related.

I've tried several different types of treatments, including cranial sacral therapy and TMJ mouth guards with little relief. So I’m sticking to Kadian and exercise.

My neurologist wants me to try different drugs. I suppose I will have to but I am not looking forward to the side effects. I’ve experienced horrible side effects from the drugs I’ve already tried. Having chronic pain is bad enough; side effects makes life intolerable. My neurologist also wants me to stop taking Kadian, but it’s the only thing that helps me be a somewhat productive human being.

Since I’m on drugs for my headaches, I try to minimize the other drugs I take. I’ve found that using a neti pot as part of my allergy treatment works just as well or better than nasal steroids. I still have to take another allergy medicine but it doubles as an asthma treatment. I also take a number of different vitamins.

What would you most want to say about HC to someone who doesn't have it?

Co-existing with HC is like living with an evil, fire-loving pain monster inside the right side of my head. The monster is constantly lighting torches and inviting friends over to enjoy bonfires, barbecues and toast marshmallows. The burning pain is like the pain you feel after touching a hot iron or stove. The inside of my skull must be covered in blisters.
I believe HC is a disability. I have needs that must be met so I can be productive, much like people with recognized, visible disabilities. I need an odor-free, dimly lit, quiet, cool but not cold environment. When it seems like I’m being a pain in the ass, I’m usually just trying to avoid pain. Most of my co-workers don't understand the chronic pain and they take these attempts personally. We get all sorts of diversity training at work, but I still have to fight for my needs. Health really needs to be pushed as a diversity issue.

What was the key turning point in managing your pain?

Earlier this year I realized I wasn’t going to get better, that a cause for my pain isn’t going to be found. I’ve been through every possible test and nothing was found except inflammation where my shunt had been. Since then, I only see doctors who know their ears serve a purpose. I realize I have to make the most of every moment and must be careful in expending my limited energy.

Has HC altered your career path?

I’m doing exactly what I was trained for in college. I love my job most of the time and I’m good at what I do. Working—doing what I love—is my greatest distraction from pain. Unfortunately, I don't expect I’ll retire from my career in the conventional sense.

Have your personal relationships changed?

I am less patient, but I was no model in patience before HC. I accept less crap from people. I think those who have stuck around appreciate me more because I don't allow anything fake in my life. I don't want to waste time muddling through falseness.

What made you start your blog?

After my shunt surgeries, I was sending out a monthly e-mail to a group of people. A blog simplified my method of updating people. They could then tune in if or when they wanted. I was no longer pushing information on people. Blogging has helped me find a community of fellow sufferers. Blogging is a way for me to connect with other people who’re suffering in similar ways. Writing is a way for me to work out my emotions and blogging is just a public way of doing this.

Does HC interfere with your blogging?

No, it inspires it. When I’m in pain, I blog about my pain, emotions and frustrations so that I can be a fairly nice person in real life. I've been able to blog about all the unqualified doctors I’ve dealt with. It’s helped me gain perspective, get past those doctors and find other paths. When I write something, I don't have to store it in my head anymore and that makes room for new thoughts.

Who do admire in the headache/migraine community?

Paula Kamen. Her book All in My Head changed the way I approached my head pain. I admire her for embracing her situation and writing about it so others can benefit.

What do you want people to know most about you?

Before HC struck, I often got bogged down with unimportant things. In a way, HC’s made me a better person and helped me to appreciate all the good things I have. I understand that life’s unfair, but aside from the nasty pain, I land quite often on the bountiful side.





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