Headaches: Living With Chronic Daily Headaches (cont.)

So my next challenge was to find what is called a daily preventive medication. That means a drug that raises your neurology's threshold to pain to sort of calm down your brain. But a problem is that many of these have very bad side effects and often don't work. I found that many of these side effects were actually worse than the original headache.

MODERATOR:
What led you to try alternative treatments?

KAMEN:
After I had no success with doctors and was even harmed by some of their drugs, I did what about 90% of chronic pain sufferers do, and sought help with alternative medicine. I had very mixed results.

Parts of it were invaluable as basic coping tools. For example, in learning meditation, I learned about the difference between emotional and physical suffering and learned to better emotionally detach myself from the pain. Before learning this, much of my suffering was due to always being on an emotional rollercoaster with the pain. When it was bad, which was very often, I sunk into despair, and this went up and down many times a day.

Like I said, some practices help me take the edge off like acupuncture, massage, and yoga. But I also experienced a lot of conflicts with alternative medicine. I saw them as having similar faults to Western doctors in overpromising. Like Western doctors, they were unrealistic about their drugs being cure-alls and ignore the severe side effects; I saw alternative medicine practitioners being too simplistic in promising total relief for any health problem -- no matter how complex -- with a series of 10 $100 visits, plus $500 for supplements. I began to see that instead of this being the mind/body connection, it was the mind/wallet connection. I was spending thousands of dollars on many practitioners and buying some of their supplements. Many of the costs weren't their fault, because insurance wouldn't cover it. Ironically, it cost me a lot more to go to a chiropractor than a top neurologist on Lakeshore Drive in Chicago.

"Even if stress is a trigger, the pain is still real."

MEMBER QUESTION:
I too get headaches almost daily. Mine are usually on the left side. I have talked to my doctor about them many times but he thinks it is all in my head or stress. What else can I do besides popping headache medication all the time?

KAMEN:
This is the No. 1 misunderstanding that doctors have about chronic pain and other "invisible" illnesses. They confuse stress as the root cause where actually it's more of a trigger.

There are a lot of people who have stress and they don't get daily headaches. It's basically a genetic problem with the brain being hyper-reactive to outside stimuli, whether it's stress, weather change, hormone fluctuation, et cetera. Of course it's a good idea to reduce stress as much as possible, because that could help the pain, but that doesn't cure the underlying neurological dysfunction that's creating the problem to begin with.

Doctors are especially guilty of belittling women's pain and judging it as "just stress." They have a history of seeing us as more emotional and hence "hysterical." Studies show they are more likely to treat men's pain seriously with painkillers and give women complaining of the same problem tranquilizers instead. This shows that you have to be an advocate for yourself with doctors and be willing to fire a doctor and go on to the next one until you're taken seriously.

MODERATOR:
But the pain is real even if it is caused by stress! So, in this case, stress may be a trigger but it isn't the cause?

KAMEN:
Even if stress is a trigger, the pain is still real. It's common that when there's any influence of stress, the whole problem is dismissed as purely psychological.

MODERATOR:
How does the headache affect your relationships?

KAMEN:
Basically it affects every area of life. To be honest, I'm not really sure if it's affected my personal life that much, because I'm able to still function, as long as I save up my marbles or my energy units.

MODERATOR:
What advice do you have for anyone dealing with chronic pain, especially headache?

KAMEN:
The first thing I would tell people is to realize this is a neurological problem and it's not your fault. You have to get rid of all guilt and shame associated with it.

You have to also realize that as a pain sufferer you have basic rights that can help ease anxiety. You have the right to get adequate pain treatment, you have the right to cancel an appointment if you're not feeling up to it and you have the right to be taken seriously about it.

Another huge piece of advice is to have acceptance so you could best live around it. A major misconception that people have about acceptance is that it means giving up. You have to have a balance between acknowledging the reality of your pain and then also striving for relief. I'm saying this so you could still live your life in the present as much as possible. You have to think about what you're able to do and not focus too much on what you can't do.

"They actually thought my mom was a drug seeker because she asked me in front of the doctor if I needed more painkillers, to remind me, and then the doctor threw us out of the office."