An Excerpt from
Living Well With Migraine Disease and Headaches

Part II: Your Health Care Team and Treatment Regimen
Chapter 9: Your Role On Your Health Care Team

It’s critical that we be active members of our health care teams. Those of us with chronic headaches and Migraine Disease need to be able to make basic treatment decisions when we have a headache or Migraine. We need to decide what medication to take and when to take it. It’s just not possible to call our doctors each time. Especially with Migraine, if we educate ourselves about the whole disease, we can often notice signs of an impending attack and be prepared to take medication early enough to avoid a full blown, debilitating episode.

We’re actually fortunate to be living when we are. There is more information available today than ever before, partly because of the Internet. Where I live, the library doesn’t have medical journals, and books on medical topics tend to be few and hardly new. The book stores here don’t have many choices either. That made my sources of information very limited until I got Internet access. Of course, when you surf the Internet for information, you do have to be particular about the sites you trust. That takes a while to figure out, but it’s worth it. We now have instant access to governmental sites such as the National Institute of Health, nonprofit organizations founded for patient education and advocacy, sites to access medical journals, and other excellent sites brimming with helpful information. We also have the wonderful online book stores where we can find just about any book we might desire.

Don’t let anyone fool you. Knowledge is power, and lack of knowledge is one reason people have felt so powerless against their health issues in the past. Even people in my parents’ generation would never have thought to ask their doctors questions. They went to the doctor, then did or didn’t do what the doctor said to do. They took their medications without thinking to ask about possible side effects. They didn’t ask what they could do for themselves to improve their condition. Most of all, it would have taken a great deal for them to ever doubt a doctor. The first time I fired a doctor for telling me my Migraines were a “female thing” I’d have to live with, my mother was shocked. What did I think I was doing? He was a doctor, so he knew what he was taking about; what did I know about medicine?

We are changing, and the practice of medicine is slowly changing. More and more, we ask those questions, will go to another doctor if we don’t feel our treatment is correct and adequate, and are beginning to realize that we are ultimately responsible for our own health.

So, who should be in charge of our health care team? Answer these questions:

• Who is with our bodies 24/7?

• Who knows our symptoms best?

• Who is most impacted by how we feel?

• Who is most affected by the success or failure of our treatment?

• Who pays the $$ for the appointment or for the insurance that pays for the appointment?

• Who is ultimately responsible for our lives and our health?

The answer? We are? Right! Therefore, we should be in charge of our health care team. We need to find doctors who are willing to work with us as treatment partners. That means that they give us the same respect they expect from us. That means they listen to us, don’t mind answering questions, and don’t resent that we are educated “consumers” in the health care market. When doctors work with us as treatment partners, they don’t make decisions for us, they make decisions with us. Doctors who work this way say it’s much more effective. When patients take part in the decision-making process, they’re more compliant patients, and stick to treatment plans far better.

How an effective Health Care Team Should Work:
So far, we’ve determined that we’re ultimately responsible for our health and that we should be in charge of our health care team. Our partner in this should be our primary care physician (PCP), family doctor, internist, whomever is your primary doctor. I’ll just refer to that doctor as our PCP. Our PCP sees to as many of our medical needs as possible, referring us to specialists as needed.

We should be able to expect any specialists we need to see to work with us in the same fashion we expect our PCPs to work with us: as treatment partners. Those specialists should automatically be sending regular reports to our PCP, and should be willing to send reports to other doctors at our request. If any aspect of treatment with a specialist has the potential to affect a health issue being treated by another specialist or our PCP, it is quite reasonable to ask that specialist to consult with the other specialist or our PCP. It is not our job as patients to be go-betweens. Each person who is added to the communication chain between doctors increases the chances of miscommunication or confusion.

Where specialists are concerned, don’t hesitate to let your PCP know if you have concerns about a specialist he or she sends you to. They need to know if there are problems, and if it’s just a misunderstanding, may be able to resolve the issue. If necessary, they can refer you to a different specialist.

Doing Our Part:
Many things go into doing our part to be an effective part of our health care team:

• Keep learning: This can’t be emphasized too much. Learn about good health, good nutrition, and any conditions you have. The return on your investment here will be astonishing.

• Talk about medications: Doctors are human. To be on the safe side, when given a prescription for a new medication, ask if new medications are safe with any other medications you’re taking. Don’t forget to mention any over-the-counter medications, herbal medications, and dietary supplements you may be taking. Also ask what effect you can expect to see from the medication and what potential side effects to watch for. When you pick up your prescription at the pharmacy, read the patient information sheet carefully before you leave the pharmacy. That gives you a chance to ask the pharmacist any questions you may have at that time.

• Provide information: Keep your headache or Migraine diary current as well as any other notes on symptoms or events that you need to tell your doctor about at your next appointment. If you do this on the computer or transfer it to the computer, you can print two copies for your appointment – one for the doctor and one for yourself. That way, you can both be looking at it as you discuss it.

• Be organized: As you think of questions you want to ask at your next appointment, write them down or start a document on your computer. Before your appointment, get them typed up on the computer. Leave space between them so you can take notes. Again, make two copies so you and the doctor can both look at them as you discuss them. Similarly, if you take several medications, it’s helpful to keep a list of your medications, the dosages, and instructions on your computer. Take a copy with you whenever you go to the doctor to save the nurse time when she’s checking to see what has changed from your last appointment. This list also comes in handy when you need to see a specialist or even when you go to the dentist. For your doctor, you can also make a note of how many to dispense and how many refills for the purpose of writing new prescriptions for you. They and their nurses have so many different patients and insurance plans to keep up with that it’s very helpful to them when you can hand them a list of exactly what you need and how you need it written. It also saves you the time it can take to have to get a new prescription if one is written wrong or the trouble of straightening things out if one is written wrong and you fill it without noticing.

• Be patient about waiting: We all hate it when we’re kept sitting in the waiting room or in the exam room. However, to me, if the doctor takes his time with me when he or she comes in, that does a lot to mitigate the waiting. For many reasons, doctors now have to schedule quite a few patients into a day’s schedule. Some also work emergencies into each day’s routine. I know there have been times with some of my doctors that they’ve spent more than the allotted time with me, putting them behind for their next patient. So, as long as the doctor takes the appropriate amount of time with me and doesn’t rush through the appointment, I’m now just resigned to some waiting time.

• Accept Nurse Practitioners and Physician’s Assistants: There may be times when you don’t feel well, and your doctor’s schedule is packed. At such times, you may be scheduled to see his nurse practitioner or physician’s assistant. Realize that they are well trained medical professionals in their own right, and give them a chance. They, too, can be valuable members of your health care team. You may even discover that for some appointments you’d prefer to see them instead of the doctor.

• Remember to say, “Thank you.:” Anyone who deals with the public gets a lot of complaints, but few compliments and little thanks. When you consider that doctors and their staff are dealing with people who are ill a great deal of the time, that has to make it even more stressful. It will work in your favor to be one of the few who sincerely thank them and compliment them for their caring attitude and helpfulness. It’s easy to forget to thank people when you’re ill or even just focused on health issues, but it’s the right thing to do and well worth the effort.

• Follow our regimen, evaluate, and report: Between appointments, it’s our job to follow the treatment regimen we’ve agreed upon, note progress or minor problems that don’t necessitate a call to the doctor, and report back at the next appointment so necessary changes can be made.

• Don’t accept less than you deserve: Although this is the last item listed as part of “Doing Our Part,” it’s not the least important. I left it for last to set it apart because it is vitally important. I know all too well how easy it is to stay with a doctor and just coast along because it’s easier than making the decision to move on. That said, we deserve better than that. We deserve the best health care team possible, and if we and our doctors aren’t working well together as treatment partners, for whatever reason, and it can’t be remedied, then we do ourselves a disservice if we accept less. Sometimes the doctor and/or their staff are really nice people, and we don’t want to hurt their feeling, but we’re not making progress. There are also situations where we may not be all that thrilled with the doctor, but even the thought of looking for a new doctor and starting over is exhausting and somewhat overwhelming. Oh, yes. Most of us have been there. Haven’t we? Stop and give it serious consideration, though. If we’re not making progress, communication isn’t good, or if our headaches or Migraines are getting even worse, “Doing Our Part” includes replacing part of our health care team. In some instances, it doesn’t have to be difficult. Often, doctors will realize that a case isn’t progressing, and suggest referring us to another doctor. If they haven’t done that yet, but we’ve been working with them for a reasonable length of time without results, some doctors are relieved if we bring up the subject and ask if they think it’s time for another opinion. Regardless, it’s a good idea to periodically ask our doctor how he or she thinks our case is progressing. That gives you an opening to express your concern if no progress is being made. If it comes down to having to make the decision to move on to another doctor, we’re only looking out for our health and wellbeing. Ultimately, that’s our responsibility.

© 2005 Teri Robert