Category: Doctors

Doctors

A Gratitude Letter

Kerrie Smyres

“I turn 40 next month. Migraine has devoured my 30s and most of my 20s. I’m so sick of it. And I’m so tired,” I said to my headache specialist through tears at my appointment last week. My words are unsurprising given the grief I’ve written about this summer. Oddly, though, my tears were not fueled by grief. I was crying out of gratitude for my headache specialist.

I began to write a blog post about my gratitude, but it didn’t feel right. My doctor is the one who really needs to know all the reasons I’m grateful for him. So I sent him a gratitude letter. I spent several hours crafting what I wanted to say, then put my rusty handwriting skills to use and wrote him a card. What I said is for him only, but I want to share one part of it with you:

“I needed you to know that even though I’m still struggling so much, your care continues to improve my life. I will eventually find relief and having you on my team is one reason I believe that is possible.”

When I was moderating for Migraine.com, a community member asked if I was a partner in my healthcare. I said no, that I am the leader of my healthcare. I don’t mean that in a belligerent way. I know my own health and body better than anyone else. I do not blindly listen (can one listen blindly?) to what health care providers say is best for me, nor do I expect anyone else to fix me. I take the input of trusted health care providers, weigh it against my own experience and needs, and make informed decisions. I do not flout authority (at least not in this instance), but I am the captain of this ship. Any good captain respects that every person in the crew is necessary to keep the ship afloat.

I can only be so confident in my own ability to run the ship because my crew includes people like my headache specialist. His compassion and knowledge have been a comfort and a help to me for many years—I first saw him in 2002, saw other specialists when I lived in Seattle and Boston, and have been back with him since 2011. I have no idea how many treatments we’ve tried together, but he always has new ideas for me. He even told me last week that he will never stop coming up with ideas I can try.

My headache specialist and I both know I’m a complicated case. We also both know that I want nothing more than to feel better. I know he’s knowledgeable, skilled, optimistic, and up on the latest research. He knows I’m determined, do my homework, and am willing to take calculated risks. We work well together. I feel so fortunate to have him on my crew.

Sending the gratitude letter felt like a bit of a risk. Being so heartfelt left me feeling vulnerable. (Although I’ve felt far more vulnerable while crying in his office.) But writing the letter also felt necessary. We have a formal relationship within defined boundaries. We are warm toward one another within those confines, but our roles are strict. Yet he has such an influence on my day-to-day life. I needed him to know how important he is in my struggle with migraine, which has thus far been the biggest stressor of my life.

It is true that having the specter of migraine looming over my 40s terrifies me. I cannot deny the presence of grief. But having that grief overwhelmed by gratitude felt almost like a gift. A reminder that this life is hard, but I’m not in it alone. I am so fortunate to have a headache specialist who truly understands what I am going through and sincerely wants to help. I needed him to know just how much that means to me.

Doctors, Reader Stories

A Neurologist’s Gifts of Skill and Compassion

Kerrie Smyres

Reader Joanell Serra wrote this thoughtful essay about her neurologist as a guest post for The Daily Headache. 

Injection-able Moments

By Joanell Serra

If you met my doctor in a coffee shop, you might guess he’s a bartender, or a school teacher. Not a renowned neurologist. He lacks the arrogance and aloofness of a typical top specialist.

Dr. M greets me like a friend in the waiting room, jokes as he hands me a three page patient release form, and chats as he fills an enormous syringe with toxins, steroids, and other potions. Today, he’s attempting to block my occipital nerve, the apparent culprit for my migraine.

The first time I came here, he asked me why I was switching doctors.

“My old neurologist doesn’t like immigrants,” I said. “He told me Trump was the only one who could save us. We needed to build a wall to protect ourselves from the Latinos, and throw the Muslims out too. I couldn’t go back to him, regardless of his medical expertise.”

“That’s terrible.” Dr. M commiserated. After a moment’s pause, he added. “I’m an immigrant you know.”

He explained his long history of migration, from the middle-east, through Europe, all the way to UCSF.

His fingers probe my scalp, until he locates a spot at the base of my neck. The needle goes in, pain waves coursing from my spine to my face, radiating from my jaw to the outer edge of my eye.

I try to be still while cursing quietly. This pain means he’s on track. He has the right spot.

“Keep breathing.” He says. “Think about a moment in your childhood.”

“Are you kidding me?” I blurt out. “That won’t help me relax!”

We stop while we both laugh, and catch our breath. We are temporarily joined in this partnership: he administers pain. I weather it. Together, we might beat this thing. Although the odds are against us. Most chronic migraineurs get worse over time, not better.

My headaches cause bizarre symptoms, but Dr. M consistently reassures me.

“Is it normal that it’s worse when it rains?” I ask him.

“Yes.”

“And that words move on the page if I try to read?”

“Absolutely. Common problem.”

“And my teeth hurt, my hands go numb, and I can smell onions cooking in a house around the corner?”

“Typical.”

He doesn’t offer me false hope, or an instant cure. But there’s healing in knowing I am not alone.

In a time when our politicians demonize immigrants, and threaten to expunge them from our midst, my health relies on the skills of this one. And I’m glad it does.

I’m so grateful Dr. M crossed the world to be here, in this moment, my doctor. Whatever made him immigrate—probably very challenging reasons—I’m better off for it, as are his many patients.

Dr. M brought with him not only a passion for medicine, and surgical skill, but warmth, a sense of humor, and an eagerness to partner with me in this difficult process. These are all gifts. I appreciate them. Even his skill with a very long needle.

Joanell Serra MFT lives and writes in Northern California. An award winning playwright, and short story writer, she has published stories in Eclectica, Blue Lake Review, Black Fox Literary Magazine, Poydras Review and LimeHawk.  She attended the Santa Barbara’s Writer’s Conference as a prize winner, and belongs to the Squaw Valley Community of Writers and the California Writers Club. Her story, Night Swimming was recently chosen and performed by Wild Sound Festival (June 2016).  She plans to publish her novel, Tangled Vines, in 2017. You can read more of her work and find links to many of her stories at www.joanellwrites.com.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Doctors, News & Research, Treatment

More Migraine and Headache Hope: 2014 American Headache Society Symposium

Kerrie Smyres

Energizing and encouraging are the words I’d use to describe the American Headache Society’s symposium last week/weekend. The opening remarks on Thursday morning actually made me cry. After the AHS president, Dr. Lawrence Newman, shared his heartfelt frustrations with migraine treatment and gave an impassioned plea for the 36 Million Migraine campaign, the room went dark. Dr. Newman then asked everyone to stand up with their cell phones lit to “shine a light on migraine_and_headache_hopemigraine.” This picture from the AHS Twitter feed shows a small portion of the room in this powerful moment.

The strength of the moment was reinforced when the first presenter of the day, Dr. Dawn Buse, asked everyone in the audience with migraine to stand. Three-quarters of the room stood. She then asked everyone who had a loved one with migraine to stand. I don’t believe anyone in the room remained seated.

“These people care,” I thought so many times throughout the conference. I saw so many doctors, physician assistants, nurse practitioners, nurses and psychologists who are passionate and enthusiastic about headache medicine. They are frustrated about lack of funding and the stigma of headache and migraine, but they care deeply about and are dedicated to their patients. They are excited – ahem, cautiously optimistic – about the CGRP drugs that are in development for migraine as well as the neuromodulation treatments that are on the horizon (like transcranial magnetic stimulation and vagal nerve stimulation, both of which are noninvasive and should be available to patients soon).

This is the third year I’ve attended this particular conference and the fourth headache conference I’ve been to. The energy felt different. Maybe it was because I felt better and was able to engage more, but the enthusiasm and optimism seemed stronger than I’ve noticed before. Even more encouraging was the number of people new to headache medicine, mostly fellows in their early days of specialization, who attended the conference.

Yes, research for migraine and all headache disorders is underfunded. Yes, the arsenal of treatments is still nebulous and it’s hard to pin down what might help any individual patient. Yes, the stigma is still enormous. Yes, there is still a small portion of patients for whom it is difficult to find the right treatment. But the field is making progress and it’s being led by enthused and engaged providers who truly care for patients. The number of academic headache centers is on the rise, as is the number of fellows being trained in headache medicine each year.

I was already full of hope about the future of migraine treatment. This conference reinforced that my migraine and headache hope is well-placed. The tide is turning. It’s one of the many things I’m giving thanks for this week.

Want even more hope? Watch this interview with headache specialist and researcher Peter Goadsby. It’s well worth your eight minutes. (Many thanks to  Timothy for sending me this.)

Doctors, Treatment

A First Visit to a Headache Specialist

Kerrie Smyres

It’s been 12 years since my first appointment with a headache specialist. Going with Hart when he saw a specialist for the first time a few weeks ago provided an interesting perspective.

Hart had a spike in his migraine frequency significant enough that we were both worried. (We figured out it’s due to an unrelated med change. He stopped the med and his migraine frequency has dropped. Phew!) Seeing my specialist seemed like overkill, but I didn’t want to mess around with unfamiliar providers who could be lacking current knowledge. As a compromise, he saw someone in my specialist’s practice. We have both been impressed with everyone we’ve encountered in the practice and this doc was no exception.

Noteworthy information:

  • Oral meds, even the dissolving ones, have to go through the stomach before reaching maximum efficacy. Nasal sprays or injections provide the fastest possible treatment.
  • Triptans are most effective when taken before the pain is moderate or severe. All the numerous headache specialists I’ve seen have told me to take triptans as soon as I know a migraine is coming, whether there is pain or not. I recently learned that some people only find them effective if they are taken once the head pain has began. This doc confirmed that when to take triptans is an open debate, but that for most patients he recommends as early as possible, head pain or not. He did say patients can test them at different times in the early migraine (while the pain is still mild) to see when the drug is most effective for them. (The question is whether or not you’re willing to risk a worse migraine now for the potential of less severe migraines in the future.)
  • The first preventives the doctor recommended were magnesium (400 mg) twice a day and riboflavin (400 mg) once a day. Amitriptyline was next if those don’t work. I expected the doctor to recommend amitriptyline, but was pleasantly surprised that he said to try magnesium and riboflavin first.

It was a straightforward appointment that went exactly how I expected a first-time visit to a headache specialist to go for someone without chronic migraine. I just wish more people got such care from the start of their migraine treatment.

Diet, Doctors, Reader Stories

Good Doctor Stories

Kerrie Smyres

Despite my terrible experience last week, most of my experiences with doctors have been excellent. After such a negative post, I want to highlight some of the great doctors I’ve encountered.

There’s the doctor who held my hand, looked me in the eye and told me she’d never give up on me. That was nearly five years ago and I still tear up when I think of it. Her kindness and sincere desire to help were a beacon of hope when I was at rock bottom.

When I moved back to Phoenix, I saw a new headache specialist who spent two hours listening to my migraine history. Two. Hours. He seemed genuinely interested and didn’t talk about a treatment plan until he knew my entire story. He helped me piece together my history and see that my childhood illnesses were very likely migraine attacks with little or no head pain. The treatment plan he came up with was comprehensive and addressed all of my needs.

For a while I was seeing my current headache specialist and another concurrently. The secondary specialist started me on Lyrica and it caused me to have suicidal thoughts. That was the last straw for anticonvulsants for me, but that doctor still pushed me to try Topamax. My current specialist understood my reluctance and has never again suggested I try an anticonvulsant.

When I told my headache specialist how helpful DAO has been for me, he was thrilled for me. He didn’t care that it’s not a scientifically proven treatment, nor did he care that he wasn’t the one to tell me about the treatment, he was just happy that I’ve finally found some relief.

Those are the some of the biggest moments, but there are so many little things that add up to feeling like I’m well cared for:

  • Being listened to
  • Acknowledgement that my symptoms are both real and debilitating
  • Being honest when they’ve reached the limits of their knowledge
  • Not telling me they know exactly the treatment that will do the trick
  • Not encouraging me to retry medications that I’ve had severe side effects from
  • Asking if I want to have children (I don’t, but if I did, it would affect my treatment in numerous ways)
  • Having respect for my writing about migraine (they don’t have to read it, but I do want them to acknowledge there’s value in it)

Last week’s doctor failed on every one of those counts (and I actually wrote the list months ago), but most of the doctors I’ve seen shine on all points. I’m tremendously thankful for the incredible care I’ve received from headache specialists.