All in My Head: Living With Chronic Daily Headache

WebMD Live Events Transcript

For 15 years, author Paula Kamen has done battle with the chronic pain of a daily headache. She shares her struggle to find relief through a variety of sources, both Western and alternative medicine. She joined us on May 19, 2005.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

MODERATOR:
Welcome to WebMD Live, Paula. Thank you for joining us today.

KAMEN:
Thank you for having me.

MODERATOR:
You write about a headache you've had for 15 years. What started it?

KAMEN:
It's basically a neurological dysfunction called chronic daily headache. It started with me at the age of 24. That's a typical age of onset. Chronic headache problems typically begin in the teens or 20s. It's basically a genetic disease with environmental triggers.

MODERATOR:
What does it feel like? On a scale of 1 to 10, how painful is it?

KAMEN:
It's at a moderate level of pain all the time -- 24/7. So it's usually about a 4 or 5. It's usually not as severe as a typical full-blown migraine, but enough to make everything more difficult. I compare it to going through life with the parking brake on, there's just always this underlying struggle to everything.

MODERATOR:
What's it like right now?

KAMEN:
It's probably a good day today, about a 3.

MEMBER QUESTION:
How do you cope every day, knowing that you will have this pain?

KAMEN:
It's not easy; every day is a struggle. But I have found ways to reduce my levels of emotional and physical suffering as much as possible. Part of that is having balance -- getting enough sleep, exercising, not doing too much. I have to accept that I have the pain in order to work around it. I also accept that I work now at a slower pace and that's OK.

I have also found some alternative medicine methods that help to take the edge off sometimes. They are not cure-alls, but are tools that I have at my disposal. That includes massage, acupuncture, yoga, hot and cold packs, a mixture of lavender and peppermint oil on the temples, and a few other things. But we're all unique and we have to find for ourselves what works and doesn't work.

MODERATOR:
You talk about trying all kinds of therapies -- traditional Western and Eastern. Tell us more about your search for relief. What did you start with?

KAMEN:
Like almost everybody, I started with over-the-counter medications like Excedrin, aspirin and Tylenol. But a problem is that those can actually make daily headaches worse in the long run, and cause what are called rebound headaches. They can desensitize the brain's natural painkillers over time. They are fine to take once in awhile, but not constantly -- like every four hours as I was doing.

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.

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.

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.

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?

KAMEN:
We have to be very strong advocates for ourselves. Like I said, if you get a bad feeling about a doctor psychoanalyzing you or belittling you, move on. Women today no longer will tolerate and shouldn't tolerate the old-fashioned parent/child relationship that has been the model in medicine for more than 100 years.

The good thing is I'm part of a new generation of women that feels a whole new sense of empowerment and lack of shame, and insists upon having a partnership with their doctors. So I hope that as consumers, we can force the medical system to change by demanding better treatment. That way, the sexist doctors won't have any patients left. They no longer will be able to financially afford to be arrogant and condescending.

MODERATOR:
What are the most important things you have you learned from having a headache for 15 years?

KAMEN:
No. 1, some of this will be repetition, but I can't emphasize enough the importance of acceptance. My life turned around in terms of quality after I came to accept this as a disability. That way I stopped butting up against it unexpectedly all the time. For example, now that I accept my limits I'm more dependable. I'll plan less for the day and then I'll be much more likely to enjoy the few activities that I do have. I'm enjoying overall having a much less chaotic and more meditative life than ever, even compared to before I had the pain.

Another lesson is that you have to take it one day at a time and not worry about what's going to happen tomorrow. You have to have faith in yourself to plan wisely and have the strength to withstand whatever may come up that day. In other words, I really learned about the importance of good pain management and reducing emotional pain as much as possible. One useful source was the book From Patient to Person , which is available from the American Chronic Pain Association (theacpa.org is the web site where you can order it). It talks about a lot of basic coping and management principles that doctors don't tell you about, that could dramatically improve the quality of your life.

MODERATOR:
Paula, we are almost out of time. Before we wrap things up for today, do you have any final words for us?

KAMEN:
I invite people to visit me at my web site, paulakamen.com for comic relief and also some serious advice. I just posted the 10 red flags of alternative medicine that I learned the hard way. It also has tour schedules for the west coast over the summer.

MODERATOR:
Our thanks to Paula Kamen for joining us today. Members, thanks for all of your great questions. I'm sorry we couldn't get to all of them. For more information, please read All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache . For more discussion on this topic, be sure to visit the WebMD message boards to ask questions of our online health professionals and to share questions, comments, and support with other WebMD members.

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