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Chronic Pain Has Many Faces: 2016 Calendar

calendarEveryone who lives with chronic pain could use a daily reminder of our strength and courage. Anna Eidt, who blogs about migraine at Brain Storm and writes for Migraine.com, and her friend Jamie Ashforth have created a beautiful 2016 art calendar to do just that. Anna wrote the text and Jamie painted watercolors in response to Anna’s words. The image in this post is a sneak peek of the calendar; you can see details in this PDF preview.

This beautiful calendar would make a great gift (to someone else or to yourself!). The calendar is available on Anna’s blog and in Jamie’s Etsy shop. You still have time to order for Christmas delivery!

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Correction: $10 Million to UCLA, $8 million for Migraine Research

The Goldbergs gifted $10 million to UCLA Health Sciences: $8 million will go to migraine research through the UCLA Goldberg Migraine Program, $1.5 million will be for the Goldberg Health System Fund, and $500,000 will establish the Goldberg Head and Neck Fund in the department of head and neck surgery.

From the press release:

UCLA Health Sciences has received a $10 million gift, most of which will support multidisciplinary research on migraine, a debilitating neurological disorder that affects 36 million people in the U.S.

In addition to the portion of the gift supporting migraine research, $500,000 will establish the Goldberg Head and Neck Fund in the department of head and neck surgery under the direction of Dr. Gerald Berke. The remaining $1.5 million will establish the Goldberg Health System Fund.

I’m sorry for the mistake. This is embarrassing, but I even double-checked the numbers and understood the $2 million to be in addition to the $10 million for migraine research. Perhaps the tears of joy for clouded my vision (and my ability to add).

Whether the amount for migraine research is $10 million or $8 million, it doesn’t diminish the real value of the gift: hope. That’s reflected in almost every thank you I read. As is the idea that this gift shows us that our lives matter. Writing those words makes me sad, but I’m not surprised it was a common theme. (That last sentence quickly evolved into a discussion of NIH funding for migraine relative to other diseases. It’s an important discussion to have, but not appropriate in the post. I’ll share it soon.)

Thanks to reader Julianne for pointing out the mistake.

 

 

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$8 Million Migraine Research Gift: A Thank You to Wendy & Leonard Goldberg

Dear Mr. and Mrs. Goldberg,

As I learned of your generous migraine_hopegift to UCLA for migraine research, I was so overjoyed and overwhelmed that I couldn’t stop crying. The news is exciting for me personally, but the tears were not only for me. They were for all the amazing people who have endured enormous pain and sorrow because of this disease. In UCLA’s press release, Dr. Charles said, “Migraine is generally under-recognized as a major medical problem, in part because it is not fatal. But it is not hyperbole to say that it can ruin lives.” He is so right.

In December 2009, years of constant, ever-worsening pain, nausea, fatigue, and cognitive dysfunction nearly devoured my last glimmers of hope. I went to bed each night wondering if I would survive the next day. I later learned that my husband had the nearest in-patient psychiatric clinic programmed into his phone and came home for lunch to make sure I hadn’t attempted to take my life. His unwavering support, a team of great doctors, and amazing family and friends got me through those bleak, hopeless days.

I am extremely fortunate. So many people I hear from as a patient advocate are lacking social support, financial resources, and access to health care providers who understand migraine. The stories are heartbreaking—lost marriages, estranged children, opiate addiction, poverty, homelessness, suicide. Living with any chronic illness is difficult. When the disease is poorly understood and heavily stigmatized, as migraine is, it can render a person’s life, and even self, unrecognizable.

Upon hearing of your donation, I shed tears of joy for my own future, of course, but mostly I cried for the millions of people whose lives are in turmoil because of migraine. Your donation will fund research that could ultimately give millions of people relief and reduce the stigma of migraine. The magnitude of your generosity cannot be overstated, but you’ve also done something that, to me, is even more remarkable. You have given hope to people who struggle desperately to see beyond a life dominated by disabling migraine attacks. You have given us the invaluable gift of a glimpse of a better future.

Thank you. Thank you so very much.

Sincerely,
Kerrie Smyres

Readers: Many of you have expressed a desire to thank Mr. and Mrs. Goldberg yourself. You may leave your comments below and I will pass them along. Also note the correction that the gift was $8 million for migraine research.

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Gastroenterologist, Adderall, and Migraine Status

Gastroenterologist & Headache Specialist

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.

Adderall

What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)

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Losing Time to Migraine

How much more time will I lose to migraine?Last Tuesday

I turn 39 on the 28th. For the first time in my life, I’m not excited about my birthday. It’s not the typical existential dread of getting older. I like the wisdom that has come with age and am OK knowing that the remaining years in my life are dwindling. The distress comes from knowing that migraine will have an outsize role in determining how I spend those years.

I have been housebound for nearly two months. Confined to the couch, I have to wonder: Will I have another six months of this then get back on track with my dreams? Or will I spend another decade trying fruitless treatments while science catches up with my body?

Thinking of everything I’ve lost to chronic migraine—friends, work, school, hobbies, living in Seattle…—brings me to tears. But only one loss is a fresh bleeding wound whenever I think of it. Time. Time is the only thing I can never regain, repair, or replace. Approaching my birthday prone on the couch, I ask: How much more time will I lose to migraine?

There is so much I want to do with my life. Writing to do, family to spend time with, friends to see and make, countries to travel to, bands to dance to. I don’t waste any minute of my time when I feel good (or even halfway decent). On those days, I go nonstop and crawl into bed at night satisfied and happy that I’m tired from exertion, not migraine. But those hours don’t add up to enough for me reach my goals.

In January, I finally believed that the improvement I experienced in 2014 was real and lasting. I finally believed that I had enough energy and cognitive ability to bring the book I have in mind to fruition. In March, that belief was shattered. I know the book will happen, but not until migraine stops absorbing all my physical and mental energy. Will that be next year? Five years from now? 20? I have work to do. When will I get to do it?

Last Wednesday

The 17-year-old main character in the novel I’m reading is trying to discern the meaning of a poem her grandfather shared with her before his death. It’s a future society and the poem is illicit, so Google is of no help. Over and over, she puzzles through these lines:

Do not go gentle into that good night
Rage, rage against the dying of the light

It’s a Dylan Thomas poem that’s probably familiar to you. It was to me, but the words hit me harder than they ever have before. As the main character begins to understand what the poem means to her, I considered what it means in my life.

My 30s are nearly over and I don’t know how much more time I’ll lose to migraine. Now matter the number, the one certainty is that I will spend that time raging against the dying of the light. I’m still breathing, therefore I’m still trying to get better. I will not go gently. I cannot. I love life too much to give up.