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Is Seeing a Specialist Always Best?

When people ask me about finding a doctor, I almost invariably tell them to see a headache specialist. Seeing someone with headache-specific knowledge is important because headache disorder education isn’t widespread. But is seeing a specialist always the best idea?

Dr. Aniruddha Malpani of The Patient’s Doctor writes:

Most patients want to go to the doctor who has special expertise in handling their particular problem. They will spend a lot of time and energy tracking down the “biggest name in the field” – and then leave everything up to the doctor. This can often be a short-sighted approach, because specialists are biased, and it’s important to be aware of this bias.

While it’s true that an expert has a lot of experience in dealing with a particular problem, this extensive experience also introduces all sorts of bias in the way he handles this particular problem. There are many reasons for this.

Because he is used to seeing complex cases which have been referred to him, he often cannot deal with simple bread and butter problems ! He also sees life through a distorted lens, and may not be able to see the big picture. Because he cannot afford to make mistakes, he often overtests and overtreats. He often asks for esoteric and expensive (and painful) tests, to differentiate himself from the other ordinary doctors. He also usually bad-mouths alternative options of dealing with the problem – after all, this is his competition! He is reluctant to refer cases which he cannot handle, because this would damage his aura of omnipotence and omniscience.

Often, in the pursuit of narrow goals, he loses objectivity; and is more interested in doing research rather than treating patients. Many experts are so used to seeing only sick patients, that they often cannot recognize a normal variant!

What do you think? Let us know in the comments below or on the online support group and forum.

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Test Results Negative, New Neurologist Loses Interest

The neurologist I had such high hopes for lost all her shimmer in my follow-up appointment. The good news is I have no aneurysms, tumors or lesions and all my blood tests, except for one, came back fine. The bad news is the test results made me completely uninteresting to a neurologist who is primarily interested in autoimmune disorders.

Prolactin, Wikipedia and Google
The one concern in my blood test was an elevated level of prolactin, a pituitary hormone. The neurologist thought one of my medications could be the cause, so she turned to Google to check. Nothing came up until she came across the Wikipedia page that said Reglan could increase prolactin. I trust Wikipedia for Joanie Loves Chaci trivia, not for medical information.

She did look for further confirmation. Google turned up a six-page article on prolactin and the results included something on Reglan. After looking through all six pages, the neurologist didn’t see a mention of Reglan. She said, “I can’t find it, but Google says it’s in here, so Reglan is probably the cause.”

I actually agree, especially because I think the endocrinologist checked my prolactin levels in March. The neurologist and I also agreed that I should stop taking the drug and get another blood test in a month. She also mentioned that the endocrinologist should look for adrenal problems.

Lupus, Autoimmune Disorders and Fibromyalgia
Having hoped an autoimmune disorder was the reason I’m tired to the bone, I asked if fibromyalgia might be the cause. “Maybe, but we’re only looking at things we can do something about,” was her response.

Cyproheptadine
Cyproheptadine is an old antihistamine that has been used to treat migraine. The neurologist said she used it when she first started practicing 25 years ago, then quickly moved on to other meds. Now she’s come full circle and finds it pretty effective.

Great, but I’m not taking a drug without knowing anything else about it. I asked “What are the…” before she cut me off with “…the side effects for cyproheptadine? Nothing. You may have a dry mouth in the morning, but that’s it.” I know better than to believe a drug has only one side effect.

Researching the drug when I got home, and not relying on Wikipedia or Google search results for an answer, I discovered dry mouth is one of the biggest side effects. So are headaches and dizziness, my two main symptoms.

And, get this — cyproheptadine can affect pituitary-adrenal response lab results. I’m going off Reglan because it might affect pituitary lab results. I’m also supposed to have my endocrinologist check for pituitary and adrenal problems. But I’m prescribed a drug that can affect these very lab results?

Sinus Blockage
My left front sinus cavity has three pockets of fluid. It isn’t floating around, but walled off in lumps. I forgot to ask about treatment for that; she forgot to mention it. I guess an ENT is next?

Dismissal
I could feel her interest in me waning as the appointment went on. I became another migraine patient — one who is hard-to-treat at that. She’s willing to try the two best drugs in her arsenal (Topamax if cyproheptadine doesn’t work). She would probably continue to treat me if those drugs don’t work. I just don’t think she has any interest in doing so.

I’ve been fortunate with doctors. Other than one poorly regarded headache specialist, I have never felt this dismissed. It is like I started dating someone I thought would be a great match and was dumped with no explanation.

What’s Next
I’m discouraged. I hoped the lupus test would be positive. Not that I want to have lupus, but having a place to start would be nice.

I see the endocrinologist in June and will wait until that appointment before taking cyproheptadine. The drug might work and I want to try it. Just not at the expense of already questionable lab results. Then it is time to go through the list of -ologists I haven’t seen and make some appointments. I’ll also add an ENT to my list of doctors to check my sinuses.

I increased my magnesium to 200 mg last night. That is the only thing I’ve noticed a difference with, so I’m going to run with it. As long as I don’t get nauseated, I’m happy to push the dose. Still, I’m tired of treating myself.

I will probably go to an inpatient headache clinic this fall. Chronic daily headache patients often have excellent results at first, then return to the same levels of pain a few months later. A few months would be better than none at all.

I’ll get through this. I’ll look for more possibilities. I even believe I may find something soon. That doesn’t prevent the disappointment.

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New Neurologist, New Possibilities

Having focused so long on my headaches without finding a successful treatment, I decided to visit a general neurologist and start from scratch. I brainstormed everything in my body that could possibly be a symptom, even ones I’ve had so long that they seem normal. I also took a list of all the medications and treatments I’ve tried for migraine and chronic daily headache.

I liked the neurologist off the bat. She went over my list symptom by symptom, asking lots of questions and making many notes. A comprehensive neurological exam, with toothpicks pokes, followed. We closed the 75-minute appointment going over the possibilities and planning follow-up steps.

I had blood drawn to test for adrenal problems and lupus or related disorders. Since I haven’t had an MRI since 2002, I had one yesterday. I also had an MRA, which lights up the blood vessels, to check for aneurysms. This afternoon I’m meeting with the neurologist to go over the results.

No one has mentioned adrenal or autoimmune disorders (like lupus) to me before. I’m intrigued. I could probably find symptoms to coincide with any disease, but my do mesh well with autoimmune illnesses. If the test for lupus is positive, I may have lupus. Or I may have one of a long list of other autoimmune disorders (also referred to as collagen vascular disorders). A positive lupus test will mean another level of testing.

I’ll let you know what I learn at my appointment. I really feel like we’re getting somewhere, but I’m trying to not set my expectations too high.

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Nominate Your Headache Care Provider for The National Headache Foundation’s Healthcare Provider of the Year Award

There’s still time to nominate your favorite headache care provider for the National Headache Foundation‘s Healthcare Provider of the Year Award. Submissions are due March 14.

The National Headache Foundation Healthcare Provider of the Year Award recognizes an outstanding healthcare provider. The award is open to physicians, physician assistants, nurse practitioners and nurses serving patients with headaches and practicing in the United States or U.S. territories. Patients, friends and co-workers may nominate healthcare providers. A selection committee compiled by the National Headache Foundation will judge nominations based on the following criteria:

NOMINATION CRITERIA

Scope of Care
Nominee must be a physician, physician assistant, nurse practitioner or and nurse who cares for or serves patients with headaches.

Quality of Care
The nominee must demonstrate a high level of clinical expertise and a commitment to improving healthcare delivery to headache sufferers.

Dedication
The nominee must have demonstrated extraordinary dedication to patients with headaches during the year and throughout his or her career.

The Healthcare Provider of the Year Selection Committee will review all nominations. Current members of the National Headache Foundation board of directors and staff are not eligible to participate as nominees in the Healthcare Provider of the Year program.

The nomination form (with applicable attachments) must be postmarked or received at the National Headache Foundation office no later than March 14, 2008.

Nominations can be submitted via email to nhf1970@headaches.org. Completed nomination forms can also be mailed to:

National Headache Foundation – Healthcare Provider of the Year
820 N. Orleans, Suite 217
Chicago, IL 60610-3132

For additional information, please call (888) NHF-5552 or email info@headaches.org.

Nomination Form (Word file)
Nomination Form (PDF)

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Headache NewsBlog By Headache Specialist Alexander Mauskop

Alexander Mauskop, director of the New York Headache Center, regularly posts his thoughts on current headache news on the aptly named Headache NewsBlog. He dispels myths and examines closely media coverage of headache news. Here’s a taste of Mauskop’s blog, but look over Headache NewsBlog to get the full flavor.

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