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Setting My Skepticism Aside

Several of you have sleuthed out which doctor I saw last week and, upon reading her website, have asked (kindly) why in the world I even saw her. “Quack” is the word that comes to mind looking at her site — her version of science is hogwash and her treatment practices are over-the-top woo. The appointment proved that she is indeed a quack.

Why is someone who understands and appreciates science, dislikes quackery, and has solid critical thinking skills seeing a doctor like this? It’s really quite simple: I want to feel better and current medical science isn’t moving quickly enough for me. If this doctor had given me even one piece of helpful information (and her credentials indicated she could), the visit would have been worth the money spent.

This is odd an odd place to be. I have the utmost respect for Western medicine and appreciate that diagnoses and treatments are well grounded in science. Pursuing treatment that has little or no empirical evidence to support it goes against my inclination. However. The most improvement I’ve had has come from a treatment that’s untested and unproven for a diagnosis that’s outside mainstream medicine.

I continue to set aside my skepticism (as long as I don’t believe a treatment to be harmful) because Western medicine hasn’t yet been able to help me much. I haven’t given up on allopathic medicine, but I’m also not sitting around waiting for it to catch up to my needs. If I had, I wouldn’t have felt better in the last nine months than I did in more than a decade.

My ability to function is more important than money or having my beliefs called into question by finding a treatment that goes against the grain. I won’t bankrupt myself for a treatment and I won’t try anything I deem potentially harmful or total bull. I evaluate every provider I see with logic and reason and, if I have to stretch my boundaries a bit sometimes, that’s OK. Time out of bed is the most precious commodity I have and I will always seek to increase it. This is my life.

(Since some of you have asked: I didn’t do any of the tests and will not be seeing this doctor ever again.)

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So-Called “Patient-Centered” M.D. & the Worst Medical Appointment of My Life

Having such severe and varied symptoms as I have had for so many years means I’ve seen A LOT of doctors. Most have been compassionate, knowledgeable and kind, with a few appalling exceptions. Yesterday’s was far worse one ever. Ironic, given that this is the first M.D. I’ve seen who specializes in functional medicine, a patient-centered approach that considers the whole person by spending time with and listening to the patient, according to the Institute of Functional Medicine.

Sounds great, right? Except that she seemed to have missed the memo. She explained that has an M.D. and practiced as a gastroenterologist for 30 years, but got into to functional medicine to consider the physical, psychological and spiritual aspects of patients, including their “roots and soil.” She then interrupted me non-stop and got aggressive and angry. A handful of examples:

  • She’d ask questions then cut into my response almost immediately to explain why what I was telling her (about my own life and experience) was wrong or inaccurate.
  • When I misunderstood a question, she let me answer for a minute, then barked, “That’s not what I asked.”
  • I tried to clarify a statement. She cut me off and said my response “didn’t matter.”
  • She told me she would not call what I have migraine, that I have headaches. (I’m not too picky about whether the attacks are called migraines or headaches, since that’s the terminology that specialists and researchers use, but I’ve never had someone refuse to acknowledge migraine at all.)
  • The dietary discussions were all either her saying, “Really????” when I mentioned a trigger or telling me I had to stop eating something and that I should try the alternatives. I’d list all the alternatives that have been triggers and she’d say, “Really????” There was no input, no guidance, no connections, just disbelief.
  • She was 70 minutes late to start the appointment. At the end, she handed me off to the person who could give me prices for tests and told her, “These are the tests I want ordered. There’s no dietary plan or supplements because she’s too sensitive.” Then she left. No “It was nice to meet you” or “We’ll try to figure this out” or even “Thank you.”

As galling as all those examples are, it gets way worse.

The main assessment: I have migraine because of a psychological block from my childhood and I need to do some deep emotional work. When I mentioned the great work I’ve done with my therapist in the last year, she said that if my therapist were going deep enough, my migraine frequency would have declined. (That’s the only time she said migraine instead of headache.) The solution? To journal at home. With my non-dominant hand.

She pleasantly explained that she’d read all the ingredients in a supplement aloud and I should tell her if I’d reacted to anything that was in it. She got through one list and, when I said quercetin had triggered migraine attacks in the past, she said, “If you can’t take this [supplement], then I have no idea what I can do for you.” Later, she sighed and said, reluctantly, “We’ll see what we can do for you.”

Then she told me about the tests that she’d need to do to figure out what was wrong with me. Although the office doesn’t take insurance, she asked what my health insurance company is. “That’s terrible,” she said. “If you’d had X or X, they’d reimburse for these tests, but your company doesn’t.” Then she said that the most helpful test she wanted to do was $2,000, but she wouldn’t order it because of the cost. The other tests she wanted me to do totaled $2,228.63. I’ve looked into the recommended tests. They all claim to gather tons and tons of seemingly useful data (a seductive prospect for someone who is trying to make connections to improve their health) that has absolutely no solid utility.

Hart’s take: She’s a fraud who preys on sick and desperate people. When I arrived with 10 years of records from impressive medical centers and a detailed dietary analysis and used medical terminology with ease, she knew she couldn’t pull the wool over my eyes. She was aggressive and accusatory to show me that she couldn’t help me through no fault of her own, but because I was in the wrong.

I agree with his perspective. I was already suspicious of the office’s financial set up. According to their website, they don’t accept insurance because “we prefer to have a direct relationship with our patients and to give them the opportunity to make the final decision as to which treatments are most beneficial for them.” Some perfectly reputable health care providers don’t take insurance, so that alone isn’t a red flag. Right before the appointment, I learned they charge for medication refills through a pharmacy. Afterward, I discovered that every test they do has an added service charge of $40-60 and another $40 if shipping is involved.

I know enough about migraine, medicine and my own body to know this doctor was mistreating me to save face. I was able to get angry and not be heartbroken by having an “expert” tell me there was little hope for me. If this had happened 10 years ago, I would have been devastated. I would have believed that I would never be able to find relief from migraine, not that the doctor was blaming me for her shortcomings.

That’s what I’m angriest about. I saw through her bullying, but what about the people who do arrive in her office doe-eyed and terrified? Either she takes them in for thousands of dollars of tests, supplements and follow-up appointments or they leave believing they’re a hopeless cause. How is that patient-centered? How is it in the best interest of anyone or anything other than the doctor’s bank account?

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Full of Hope About the Future of Migraine Treatment

I just left my headache specialist’s office and have more hope for the future of migraine treatment than I have ever had – not just for myself, but for all of us. There are exciting treatments on the horizon, like transcranial magnetic stimulation, vagus nerve stimulation and monoclonal antibodies (the CGRP drugs), but most of my hope comes from something my headache specialist mentioned offhand at the end of my appointment: Neurologists worldwide are becoming increasingly interested in treating migraine.

That’s right, there is growing interest among neurologists throughout the world who want to treat patients with migraine. My headache specialist described general neurologists who have spent their careers treating a wide variety of neurological disorders other than migraine who are now seeing migraineurs as half their patients. The switch is partly because of those exciting treatments I mentioned above as well as Botox and Topamax.

It got me thinking. Maybe a reason there have been so few doctors treating migraine and headache is because there haven’t been very good treatments. If you were in medical school and choosing a specialty, would you want to enter a field where you had to tell so many patients, “Sorry, I can’t help you,” while also knowing there were few treatments in development and next to no research funding to investigate the physiological mechanisms of the disorder? Beyond those with a personal interest, I expect most people choosing that work would have to thrive on challenge.

Thankfully, some people fit that bill. They’re the doctors I have relied on so heavily. They’re the ones who have brought the field to a place where the future is beginning to brighten. It isn’t perfect, of course, and much work remains. Migraine research continues to be underfunded and treatments options are relatively sparse, even with the new ones in the pipeline, which could fizzle out before they get to patients.

Still, I like how the pieces add up:

the research that’s in progress
+
genetic discoveries about migraine
+
an increase in academic headache centers in the U.S.
+
more doctors knowledgeable enough to treat migraine patients successfully
+
fundraising for research
+
awareness-raising
=
hope many more migraine patients will find relief in the near future

And I hope that an increased interest in migraine means more attention for all headache disorders. Migraineurs may be the majority, but we’re not the only ones who know what it’s like to have our lives turned upside down by a poorly understood illness with limited treatment options. In fact, we’re better off on those fronts than people with many other headache disorders.

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Opioids Under-Prescribed Due to Addiction Fears?

Fear of Addiction Means Chronic Pain Goes Untreated, according to an NPR story that aired last weekend. While there’s definitely some truth to the headline, it obscures the nuances of physicians’ reluctance to prescribe opioids (a.k.a narcotics) for chronic pain in general and headache disorders specifically (particularly migraine).

Opioids were originally prescribed for short-term pain, like from surgery or an injury, or for use in end-of-life care. Chronic pain is a serious medical issue that is both under-treated and has limited treatment options, so it’s understandable that opioid painkillers filled that void, especially because opioids are the only source of relief for many people with chronic pain. Unfortunately, they began to be prescribed for long-term use before there were a lot of studies on their long-term effects. Now that research is catching up, this use is being questioned.

Beyond addiction, other potential problems for using opioids for chronic pain include opioid-induced hyperalgesia, tolerance and the systemic effects of long-term use. Opioid-induced hyperalgesia, when opioid use increases a person’s sensitivity to pain, is one concern. Tolerance — which requires taking increasingly higher doses of the medication for it to still be effective — is another. The repercussions of regular (and often increasingly higher) doses of opioids could have on the body’s systems should also be considered.

Headache disorders have additional issues. Rebound headache (medication overuse headache) is the most widely addressed concern. In addition, the American Migraine Prevalence and Prevention study found that using opioids more than eight times a month can cause episodic migraine to transform into chronic. (Diana Lee recently reported that there may be a difference between short-acting opioids and long-acting ones and that long-acting opioids may be OK for long-term pain management for people with chronic migraine.) Headache specialists also believe opioids impair the efficacy of preventive medications.

On top of all that, opioids aren’t even particularly effective for any type of head pain. In the video I shared last week, headache specialist Mark Green explained why:

“Part of the reason for that is there are fundamental differences in the chemistry of head pain compared to visceral pain. In the receptors subserving head pain, we really don’t have a lot of opioid receptors, so the upside for the use of opioids is rather low. That’s why we use, for example triptans and ergots. Those serotonin receptors are very well represented on those receptors that subserve headache.”

What do I get from all this?

  • Boiling down concerns about opioid use to a fear of patients becoming addicted is an oversimplification.
  • There are a lot of unknowns about opioid use for chronic pain. As more research is published, the less they seem like a good long-term solution.
  • Head pain is different than bodily pain and migraine may different still.
  • Chronic migraine isn’t a chronic pain disorder, nor are chronic cluster headaches. I don’t know where tension-type headache falls on the continuum, but I’m inclined to believe it’s more on the side of other types of headache disorders.
  • Using opioids can significantly alter treatment for an underlying headache disorder.
  • Mostly, I’m left with a lot of questions (and so are researchers and physicians).

I’m not anti-opioid, but want anyone who takes them for headache disorders to know the facts and to be very, very careful. Ideally, your headache specialist would be the prescriber, but fewer and fewer are willing to prescribe opioids (not out of fear of addiction or the DEA, but because of the ramifications for treating the condition you’re using opioids for in the first place). If your headache specialist won’t prescribe them, still be honest with them about how often you use them and at what dose — without that information, your specialist can’t treat your headache disorder properly.

Note: I’ve used words like “potentially” and “can” a lot in this post because not everyone’s the same. It’s important to be aware of the risks, but also to remember that not everyone will have all the same issues.

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Nerve Stimulation for Chronic Migraine

Thinking about trying a nerve stimulator to treat chronic migraine? Ask tons of questions beforehand to help ensure you’re making the most informed decision possible. I’ve brainstormed questions to ask your doctor, other patients, and even yourself in Nerve Stimulation: Questions to Ask, my latest post on Migraine.com.

You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.