Bill's interview
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How did all start?
The pain mysteriously began one day on my way home from work. I recall looking west while driving in preparation to make a left turn. I looked towards the sun and I'm guessing the bright light triggered the head pain.
Do you already have a diagnosis? How long did it take you to get it?
I was seeing a neurologist to figure out the pain. After taking numerous medications we found one that worked: indomethacin. The doctor explained that if that drug was successful, I have hemicrania continua. That process took a couple of years. I then discovered that I break out in a rash from the indomethacin so I had to stop taking it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I saw a toxicologist who had me on a detox program.
What has been the most useful thing for you so far?
The dietary supplement Anatabloc. Unfortunately, the FDA will not allow the pharmaceutical company that was producing it to make it any more.
What have been your biggest difficulties?
Work. I'm a high school teacher. Trying to teach teen-agers while I'm in pain is very difficult.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been very understanding and patient with me. I often have to cancel events and everyone understands. I don't really have any social life beyond family and work.
What things have you stopped doing?
Heavy exercise. I enjoy hiking, but if I do rigorous hiking it will increase the pain. I can't swim like I used to. I can't be out without sunglasses and so swimming is difficult unless I wear goggles. The smell of chlorine is a migraine trigger so pool swimming is out. I enjoy playing music at small venues: weddings, churches, etc. I can't be in bright lights so I can't play at churches. I find it difficult to make plans so I don't play at many weddings because I don't want to plan to play and then not show up because of pain. I'm an artist but I have had to limit the media I use to paints and drawing tools that don't have any bad smells. The biggest change has been reading. I used to be a speed reader and could read numerous books in a week. Now it takes numerous weeks to read one book.
What do you think about the future?
I used to have goals of being a scholar, musician, and artist. I still teach, just not at the level I thought I would be; I still play music, I just don't pursue jobs like I would like to. I still doodle and mess around with paint, but I don't look for mural jobs or book illustration jobs like I used to. I'm sure that will continue into the future. It is very discouraging.
So far, which years have been the best years in your life? What have you done during them?
My favorite years have been when my kids were young and my wife and I would take our children out on trips and adventures.
What would you like to do if you didn’t have your condition?
1. Read more; 2. Play more sports (kayak, hike, snorkel, swim, play disc golf); 3. look for weddings and other small venues to play music; 4. Do more art; 5. do more gardening; 6. be more creative in the garage with wood-working tools; 7. go on farther vacations (for now I will only travel within the US/Canada and to Western Europe).
If you had to describe your life in a sentence, what would it be?
I have two selves: at times I'm strong and can face the world with confidence but most the time I feel I'm weak and I want to hide away from the world.
Finally, what advice would you give to a person in a similar situation?
Most important: make sure you have a support group (spouse, kids, extended family, and some trust-worthy folks at work). Read inspirational literature and pray a lot. Find a hobby that won't add to pain, but can absorb you and distract you from the pain. For me it is bird watching and photography.
