Headaches: Living With Chronic Daily Headaches (cont.)

MEMBER QUESTION:
What if the doctors and hospital treat you like you are a drug seeker? Have you ever had that happen? I don't really want more drugs -- I just want the pain to go away!

KAMEN:
It's a very common complaint of chronic-pain patients. Ironically, we are very unlikely to abuse drugs, only a miniscule percentage of pain patients abuse drugs and those are usually those already with a history of addiction.

And yes, this did happen to me, at a new doctor, which is very common, because they don't know you at all. 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.

MODERATOR:
What were some of the stranger "cures" you have been offered?

KAMEN:
One of the oddest was the vibrating hat that I bought on a late-night infomercial that I was watching in Columbia, Missouri. It was basically a helmet with two small motors by the temples. It basically made my pain worse and luckily I got a full refund.

Some bizarre treatments are actually very common, like the concept of muscle testing, which a lot of alternative doctors do. That means they basically ask your muscles for answers to your health problems. A typical practice which happened to me many times is when they'd ask me to raise my arm and then they would ask me a question about my health, such as, "Are you allergic to dairy products?" and they would get an answer depending on my muscle's resistance to the doctor just pulling down on my arm. This sounds crazy, but it's extremely common.

MODERATOR:
Did you have any surgery to treat your headache?

KAMEN:
It's very common for people with chronic pain and who have had it for many years to get desperate.

I had a surgery for a deviated septum; that basically means to straighten the bone in the center of the nose that was bearing off to the left on the top, near where my headache was. I had three ear-nose-and-throat doctors tell me they were sure that was the root cause of the headache. The surgery was a disaster. I woke up with the worst pain of my life because of the aggravated nerves. After a month the pain went down to presurgery levels, but with more pain on the right side. That was new.

That whole experience showed me the dangers of invasive procedures that ironically can get covered more easily by insurance. It showed me the dangers of doctors like ear-nose-and-throat specialists who have little or no knowledge of neurology, which I now see as the root problem. The deviated septum was just a red herring. It's actually very common for chronic daily headache patients to also have sinus surgery for that reason. Actually, about 90% of what we label as sinus headaches are actually some kind of migraine headache originating in the brain stem or the base of the brain.

"We all need very tailored treatment because we all respond differently to different treatments and need many readjustments of medication."

MEMBER QUESTION:
I drink about 20 Diet Cokes a day. Is this causing my headaches?

KAMEN:
I'm certainly not a doctor, but I have read that too much of anything, any serious imbalance, can throw off the sensitive brain chemistry of someone prone to headaches. So drinking excessive Diet Coke is definitely not a good idea for anyone, especially a headache sufferer.

It's ironic that caffeine can be both a headache inducer and sometimes, when given in small amounts, can be used to relieve headaches. In fact, one of my coping techniques is to just have a few cups of tea a day, but no more than that. Some headache sufferers report dramatic results if they go without caffeine for several months.

MEMBER QUESTION:
Have you sought treatment at a special headache clinic or at a pain clinic?

KAMEN:
Yes, I certainly have. I went to many pain clinics that often do not help headache patients that much. They often are better with things like back pain, for which they do nerve blocks, but nerve blocks often don't help headache patients. I saw them as very expensive and they sent me for many types of therapy I didn't need.

I also had a terrible experience at the country's most famous headache clinic in Chicago. I called it assembly line medicine. It was very large and impersonal, with many of the same drugs given to everyone at very high doses. There seemed to be a philosophy to use whatever means possible to get rid of the headaches no matter what the consequences and side effects.

I get the best headache care from a neurologist who does not have a clinic and best of all, my internist, who takes the most time to listen and talk to me, which we chronic pain sufferers need. We all need very tailored treatment because we all respond differently to different treatments and need many readjustments of medication.

MODERATOR:
What can we do to change the medical establishment's attitudes about chronic pain, specifically women with headaches?



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