Why I Left My Headache Specialist

I have referred several times, most recently in my article about trying oxygen therapy, to the fact that I had a nationally known neurologist / headache specialist, which is, you know, sort of every migraine patient's dream. Except I left. Here is an explanation of why.

Emphasizing the importance of seeing a headache specialist

First of all, I need to say that it is very important to be seen by a headache specialist if possible. There are also a lot of neurologists who are very knowledgable about migraine; some may have less knowledge than even some family doctors. There is a list available of every headache specialist in the country here. Obviously, there aren't enough of them to cover all of us. However, especially if you are new to migraine, or have symptoms that are uncontrolled and/or getting worse, a headache specialist will help you get a handle on that. There's a reason that all of the professionals and writers on this site recommend it highly. My role here, I think, is to share my personal experience, since I'm not a lawyer or doctor or psychologist, but I will still emphasize that it is extremely important to see someone as knowledgeable about migraine as possible, as early in your journey as possible.

Leaving my first neurologist

I started with my first ever neurologist, Dr. S, when I was a young teenager. He was excellent. However, when I was in my early twenties and hospitalized with a migraine pattern we couldn't seem to break, he told me he that he had a drug he was almost sure would work, to “get me over the hump.” He even said, “You are going to want to stay on this, and I'm sorry, but I'm not going to let you.” He was right. I did want to stay on it, and with the support of my parents, I left him to do so. This was Sansert, or methysergide, which is an old school ergot derivative preventative drug known to cause heart issues, which is why Dr. S put me on it to get me out of a terrible slump but didn't want me to be on it long term. I still respect him, but at that point, I needed to stay on the drug that was working. I needed my life.

Losing the next doctor to a completed residency

That departure led me to the teaching college campus where the headache specialist practices. I first had an amazing neurology resident, Dr. D, who is the best headache doctor I've ever had. I felt free to discuss anything with her, and when John and I met I brought him to an appointment and they hit it off really well; she was teary looking at our wedding photos. Even in the early 2000s, when it was medicinally legal in very few states, she asked me if I'd ever tried marijuana for migraine. She was willing to try to hunt down medications that had been taken off the market, and most importantly she was willing to let me stay on Sansert, as long as I took a medication break every few months to have my heart checked for cardiac fibrosis, which was anyway not considered a risk if therapy was intermittently interrupted. Unfortunately, the Sansert, of course, stopped being effective for me and then it was pulled off the market for completely separate reasons (at least it had stopped working first). Then, even worse, Dr. D finished her residency and ended up leaving the city. I was devastated.

A new great doctor, not so great of a nurse

At that point, I did get shifted over to Dr. T. It took six months to get an appointment, so I would see her once per year or less. I usually saw the headache nurse coordinator, with whom I did not get along. I have referred to her before as Connie. Dr. T is like everyone's favorite extremely smart aunt. We got along well. There were times early on that she even personally called me at home. But I did not like Connie, and she was the one I usually had to see. She was cold, never smiled, did not even seem to make eye contact. John didn't like her; my mom didn't like her. At the time, I would be hospitalized about every nine months, and it would be at my local hospital (admitted from the ER). So it seemed it would make more sense to have a local doctor who was extremely knowledgeable about my situation. Once, when I was in the hospital, a wonderful, kind young woman who had me on rounds, Dr. H, offered to do that for me, though she consulted Dr. T often. Several years later, Dr. H had to retire from medicine because she herself had Multiple Sclerosis. Another devastation, as she had done everything she could for me, and she really cared. She took care of my preemie Zo when she was born, and X and John. I loved her.

Another local doctor lost

Back to Dr. T and Connie for my migraine care. Then I found another local doctor who was willing to take on my migraines and was wonderful at first, then began having some professional issues with the local hospital which caused that relationship to end cataclysmically after only 9 months. He had probably been a little too fast and loose with many, many prescriptions over the years and I know John thought he was with me as well, but it was amazing to have a doctor who cared only that I didn't want to be in pain. He didn't want me to be either. He'd been trained in Canada, and worked in hospice as well as family practice. But his unwillingness to see his patients in pain did cause problems with other doctors. Another huge loss, and back to Dr. T. This was about 15 years after I first began at her hospital with Dr. D. And this was when things started to go sour.

Going off meds cold turkey

Since it took so long for me to get an appointment, I had to go off all my meds cold turkey. It was harder emotionally than physically because I felt so abandoned and angry (the doctor's new practice in another nearby city did not take Medicaid, and he made no arrangements for continuity of care). I found a new family doctor, but she did not want to provide my sumatriptan prescriptions for more than a couple of months. I went into my next appointment with Dr. T (there had been a cancelation so I was seeing her instead of Connie) full of faith in her and determined to do whatever she told me to do. Life was a mess and I just wanted an expert to get me back on the right path.

The visit went okay. What was disappointing to me was that I was not going to get my small original monthly rescue prescription of opioids back, despite my newly developed inability to take NSAIDS (due to disintegration of stomach lining from lifelong use). She told me, you've already done the hard work of withdrawing from them, and we no longer recommend their use for migraine at all at this point. I took a deep breath and said okay. She had me take a chronic pain management class which John and I did together. She had me do some physical therapy; and finally also talk therapy with a psychologist who specialized in pain and biofeedback, which was the best thing by far to come out of the whole situation.

The worst headache of my life

I took the eight week class, believing that I was on the path to no longer being chronic, like I was told. I did the exercises both for that and my physical therapy at home, dutifully. I went twice per month to the pain psychologist, Dr. Mac. Then came the worst headace of my life. It was absolutely terrifying. I talked to Dr. Mac about how bad the experience had been at the ER, and she felt that in my situation having some emergency opioids would be advisable, particularly since I could no longer take NSAIDS like Toradol, which is a common rescue medication. I talked to a nurse on the phone, who seemed positive about the possibility, and I made an appointment but of course could only see Connie. My mom came with me, and I sat with tears dripping down my face, having followed all their recommendations for months, and she was as cold and distant as ever. She used some of the emotional work I'd done in the class, of which she was a co-teacher, against me, stating maybe I had more of an anxiety problem, even though I was getting psychological care. She wondered if that particular migraine was a bad reaction to something (which seemed truly bizarre). She prescribed oxygen for home use since it had worked in the hospital, but I had the distinct feeling she was just trying to appease me because what I was asking for were opioids, and the answer was absolutely not, straight from Dr. T, she said.

Feeling brushed off

I got oxygen and the instruction to use no tablets at all unless it was absolutely necessary. In the new plan, the first step was to use the oxygen and take a double dose of my magnesium supplement, which I immediately seized upon, because I had been long confused about the right type of magnesium and had never gotten a satisfactory answer. “What kind?” I asked. “If I'm going to be treating acute pain with it I want to have the right type, there are so many.” She said, “Whatever you normally get at the store is fine.” My heart sank. I knew already, for example, that the cheapest most readily available kind, magnesium citrate, is not recommended for migraine due to the way it absorbs. But she didn't even tell me that much. (Also I knew that magnesium infusions could be effective with other treatments in breaking a tough cycle or status migrainosus, but never had I heard of oral magnesium for pain relief.) If that didn't work, then I was to use a sumatriptan injection, and if that didn't work only then a sumatriptan tablet. If those didn't work I was to come up to their hospital for DHE infusions.

I was still weeping, and she said “You know, your treatment is in your own hands.” I looked up at her. She was right, it was. Then she said, “and God's.”

Realizing I was not being heard

With Dr. Mac's understanding and approval and under the reassurance that I could still come to her for biofeedback and therapy (they were at the same hospital), I never went back to that office. My spiritual beliefs aside (I'm kind of agnostic) I found that to be an extremely inappropriate thing to say to a patient who was relying on her expertise to help me in what was clearly a desperate situation. Dr. Mac was horrified. If I were a very Christian person, which from class Connie kind of knew I wasn't, my treatment being in God's hands might have been a very comforting thought, but for me, it wasn't. I also understand that for some people spirituality is incredibly important, especially when handling a life of chronic illness, and I don't mean to minimize that at all. I'm just not one of those people, and I felt I was appealing desperately for help and wasn't getting it. After the strange magnesium and injection-first recommendations, then the God thing I just felt... unheard.

Two years without a neurologist

Even in my confusion, however, I did try very hard at first to stick to the plan Connie had laid out for me. As I wrote in my article about oxygen, I even took a tank on vacation with me and tried my best to use more injections than tablets, but soon I was back to my usual tablet first/injection as rescue methodology after running out of injections and being unable to get more for a number of weeks; yet I wanted to only receive DHE infusions as a very last resort due to previous negative experiences with DHE. My family doctor also agreed that I should have opioids on hand for rescue due to the fact that in my nine months without them, following every instruction given to me, I had only gotten worse, and referred me to a pain management specialist. Soon after that I got involved in my first CGRP study. For two years, I did not have a neurologist at all.

The doctor roulette

The other headache specialist nearby had refused to take my case, because he said he couldn't do anything for me Dr. T had not already tried, though he did do a new MRI which was clean. Since I was going to start the study and had a family doctor and pain management specialist I felt I was covered. Now, I see Dr. M, a local longtime neurologist. He is a bit hard to communicate with, but it helps to have my migraine meds prescribed through him. Most of us know the doctor roulette. How frustrating it is to lose one you love, how horrible it is when you have a doctor who is dismissive, or accusing. My new neurologist is neither, nor is he warm or caring. However when they recently told me I could no longer have both sumatriptan injections and tablets, I advocated my case strongly with the nurse and they allowed it, which indicates respect, a willingness to listen, and an understanding that not every patient fits into the same box. Dr. T and Connie could no longer give me that.

Following my instincts

This is my story (which also involves many attempts at Botox, every preventative drug available, a hysterectomy, and on and on throughout my whole life), and the decision to leave Dr. T's practice was made over a number of months. It was not one I took lightly, and I wouldn't have done it without the care, concern and backup of my pain psychologist and family doctor. I am still chronic, but I am not chronic daily, and I have occasional very good, productive, low pain weeks. I feel happier. Because what Connie said about my treatment being in MY hands was accurate. It was, and will always be, in my hands. I knew that the right choice was to advocate for myself, leave that practice despite Dr. T's excellent reputation and follow my own path, which in my case does involve rescue opioids. Which aren't right for everyone with migraine; in fact, probably aren't right for most people with migraine. But what we all know is that migraine is extremely variable from person to person. I had been suffering severe migraine for thirty years that summer; almost a third of that time had been chronic and often chronic daily. And now I no longer feel like a sufferer, I feel like a survivor. I feel like a warrior. And this decision was the final step in my acceptance of my illness. And I want you all to know that yes, you should see a headache specialist, and yes, you should follow all their recommendations. But if you don't feel you're being treated with respect, and their recommendations don't work and they don't present any further options, follow your instincts. You know yourself best.

We are all warriors.