By

Migraine Stories: From Chronic Migraine to Advocate & Fundraiser

migraine-fundraiserKatie has turned living with chronic migraine into a chance to help others and raise awareness about the disease. In addition to starting a support group for people with migraine called Migraine IDAHO, she is hosting the second annual Haturday for Heads fundraiser. Haturday for Heads has already raised $740 for the Migraine Research Foundation through online hat sales (sorry, they’re sold out!) and will be hosting an in-person event in Boise this Saturday, April 23. The Boise event will be from 2 to 4 p.m. at BBQ4Life, which will donate a portion of food sales to migraine research. You can also enter to win some great raffle prizes at the event. If you can’t attend in person, Katie encourages you to share your story on social media (tagged #haturdayforheads2016) or donate to Haturday for Heads on CrowdRise.

Get to know Katie and learn more about Migraine IDAHO and Haturday for Heads in this interview she kindly did with me:

Katie’s migraine story

I remember my head hurting as a young kid, especially in the summer time and having to lay on the couch. But I don’t think I had true migraines until my teen years. Around 15 then got to a point that I decided I need to see someone. We (my parents and I) started with the eye doctor to rule out any vision issues, when my vision ended up at 20/20 we moved on to a neurologist. When I had my fist visit he asked me a question I will never forget, “When was the last time I did not have a headache?” I could not answer, I thought about it and could not remember the last day that I did not have some form of head pain.

He strapped the diagnosis of chronic daily headache with migraines on me and decided that we were going to shock the daily headaches into stopping. I spent a day at a outpatient facility having some drugs pumped into me with an IV. I do not remember what it was all I know is it made me nauseous and I vomited multiple times. It was such a terrible experience that when he asked me if it worked and my headache had stopped, I lied and said yes so that I would not have to do it again. From there over the years I tried different things, other neurologist with preventives, chiropractors, digestive health. Nothing has yet to work well.

I have had a few years here and there where my migraines and daily headache have been better and I managed without any medication. Now I have my baseline headache everyday, around a 2-4, with migraines anywhere from 3-7 days a week. I don’t get an aura, I do have sensitivity to light and noise. Most of the time my migraine is on both sides, but can be more intense on the right. I rarely get nausea, which is good because the few times I have, I ended up in the ER because the nausea was uncontrollable. Fatigue is also a big symptom for me.

What Katie wishes people understood about migraine

I wish that people understood that I did not choose this. That I am not lazy, that my house is messy sometimes because I am exhausted and it hurts to bad to move. I want people to realize that this is a disease and there is not a cure, I may find something that provides relief but I still have this disease/illness, it will not magically go away.

The motto that helps Katie cope with chronic migraine

One day at a time.

About Migraine IDAHO

Migraine IDAHO is a community, a group for sufferers to have support. A group to help raise awareness and provide education and resources on migraines. Right now there is a closed support group on Facebook. It started after I had found some national migraine support groups on Facebook. I always had felt like I was alone with migraine growing up. I felt like I was the only person who was experiencing this kind of pain. Once I got on Facebook and found others like me, it really helped learn more about my disease and accept it. So I wanted to create in Idaho a group that I never had, a place where that young girl, and all sufferers, were not alone. Eventually I hope the Migraine IDAHO can hold in-person support groups, do educational talks at school and businesses about migraine, and continue to raise funds for research.

About Haturday for Heads

Haturday for Heads is a migraine awareness and fundraising event. All the proceeds go to the Migraine Research Foundation. This year there was an online design contest for the hat design, hats that could be purchased on worn on April 23, and then an in person event at BBQ4Life. [Hat sales are over for this year, but follow Migraine IDAHO on Facebook so you can be sure to get one next year.]

For the last 4 or 5 years I have wanted to do some sort of event for that would help raise awareness and educate about migraines, raise funds for research, and strength the migraine community. I had communicated a few times with some of the folks at Miles for Migraine about getting a race here in Boise. The manpower needed and the logistics have not lined up yet, and I say yet because having a Miles for Migraine race here in Boise is still a goal for Migraine IDAHO. Anyways, I had the desire and want to do a event, I just needed a catalyst to make it happen.

I was back in school at Boise State University to finish up my bachelor’s degree and one of the last classes I took was Communication in a Small Group. We were put into small groups and our semester project was to do something that make a change in the community. When I heard what our assignment was, I instantly knew that this would be my opportunity to do an migraine event. It took some persuasion on my part, but I was able to get my group on board with the idea.

We only had two months to organize and our event in class so we keep it pretty simple. We had it at BBQ4Life and had a few silent auction items and a few of us made silly hats to wear. We raised around $200, which was great. After the event last year I had someone tell me that they were asked, “When are we going to have a Haturday for Heads in our city?” That got me thinking that I needed to make this a national if not worldwide event, and why not, migraines are all around the world. So I thought a good way to be able to include people everywhere would be to have a hat designed just for Haturday for Heads and people could wear it the day of the event and post pictures online. This way anyone anywhere, even the ones of us in bed with a migraine could participate.

I have already surpassed a lot of my goals for this year. We had some great designs submitted that were voted on. And then when the hat was available to purchase, we ended up selling 42 and raised $720. We still have the in person event at BBQ4Life, if would be great if we raised some more money, but for me the big goal there is to have awareness in the local community increased.

I have big dreams and goals for future years. This year we had people across the nation purchase a hat, next year I would love to see people internationally involved. In following years I would like to see some in person events happen in other cities. Also, if the Haturday hashtag became one of the top used tags, that would be awesome!

How you can participate even if you don’t live in Boise

Anyone who purchased a hat can post pics the day of the event with #haturdayforheads2016 to all social media sites. If you didn’t get a hat purchased in time, you can donate to the Haturday for Heads CrowdRise page. Also, if people comment, share, and post about Haturday for Heads they can be a part of it and help spread awareness. It would be great to see the internet explode with #haturdayforheads2016. Be it post in their hats, or just post about themselves and how migraine has affected them.

I am hoping I can do a live video post on Facebook at BBQ4Life, if so it will be on the event page.

By

Migraine Stories: Chronic Migraine, Pain Without Suffering

In this beautiful essay, John Ptacek describes how he’s learned to live with the pain of chronic migraine without suffering. Want to share YOUR story? Submit it here.

Walking the Line Between Pain and Suffering

We We learn to avoid pain, but who teaches us to deal with it?learn to avoid pain at an early age. We are taught that hot irons, sharp objects and electrical outlets portend danger. Parents counsel children about such dangers, but sometimes the most effective teacher is pain itself. Pointed lectures are no match for a bright purple bruise. Incident by painful incident, we learn to sidestep misfortune through increasingly observant behavior.

We learn to avoid pain, but who teaches us to live with it? I, along with a billion and a half other people in the world dealing with chronic pain, could have benefited from a lesson or two on this subject.

We can all avoid trips to the emergency room by treading carefully on icy sidewalks and tucking in our fingertips when speed chopping carrots, but preventive strategies are of little use to people experiencing ongoing physical pain. People dealing with fibromyalgiaLyme diseasemigraine and a long list of other chronic conditions understand that their pain cannot be outwitted. They are chained to it, and probably forever.

The urge to resist pain is instinctive. What could be more natural than to hate hurt? One of my earliest memories of pain was the electric jolt of a bumblebee sting. I wailed hysterically as my mother patted a wet baking soda mixture around my throbbing thumb. I wondered how something so horrible could happen to me. All I did was touch a flower! This isn’t fair, I decided, unknowingly adding a layer of emotional distress to the mix. Soon, the pain went away, and along with it my existential uncertainty.

This rapid recovery cycle would repeat itself in coming years as I endured broken bones, concussions, pinched nerves, kidney stones, shingles and other assorted agonies. A “why me?” inner narrative often accompanied these events, but the pain passed too quickly for me to perceive that such mental resistance came with a price. That is, until the headaches showed up at my door.

Sometime in my fourth decade I started getting frequent headaches. At first I shrugged them off to my highly stressful job. Rather than seek medical attention, I started meditating, exercising and eating healthier. None of this put the slightest dent in my pain. In subsequent years, I sought the help of every traditional and alternative health care provider who might have even a remote chance of helping me. They gave it their best shot, but nothing helped. My headaches continued unabated. The lack of progress shuttled me off to a cold dark place familiar to chronic pain sufferers, a solitary space that is all but impossible to describe to outsiders for whom pain is a just passing affair.

Frustration at having to drag my evil friend around with me nearly every day compounded my painful existence. My mind had gotten in on the act, and now I had two fires to put out. Here’s the kind of nonstop chatter I had to endure: How much more of this can I take? If it gets any worse, how will I be able to work? Am I always going to be in pain? What’s the point in living? Why can’t these damn doctors do their jobs?

Anyone experiencing chronic pain knows what it’s like to be tuned in to this unnerving frequency. My unanswerable questions pitched me further and further into an unknowable future.

Even if someone would have counseled me early in life that embracing pain, rather than resisting it, was a winning strategy, I probably wouldn’t have known what to do with it. Wisdom can be baffling at first, and brilliant only later. And anyway wisdom can’t be taught. Moments of great anguish served as my bright purple bruises, and one day, I can’t say exactly when, I got wise to the voices in my head that were the cause my suffering. I achieved a degree of separation from them. I could still hear them, but it sounded like they were coming from the next room. Without really looking for it, I discovered that there was a dividing line between pain and suffering, and depending on how I walked that line, my situation could be either bad or much worse. Who knew bad could sound so good?

This dividing line can look awfully blurry when pain pins me to the mat. Because I am not at my rational best during such moments, I keep a note in my sock drawer reminding me not to push myself and to refrain from making important decisions. I also have a secret password to pull me up when I feel myself slipping into the pit of suffering: Allow. I allow the pain, and immediately suffering leaves the room. Without resistance, suffering cannot exist. That leaves just two of us in the room, me and my constant companion, locked in an uncomfortable but tolerable embrace.

Let me be clear. Pain is a rude and abusive house guest. No secret password will put it out on the street. I will be forever forced to cover its rent. But knowing this relieves me of my duty to resist it, and in that simple act of surrender, I know that I am opening myself up to all the goodness that life will allow.

chronic-migraine-john_ptacekRead more of John’s writing on his blog, On Second Thought, where he explores “the unquestioned assumptions that limit our capacity for happiness.” His writing is thoughtful and insightful.

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

By

Survival Mode

survival mode“I’m so sorry to read on your blog about the setbacks… It sounds like you’re in survival mode,” my friend J. texted after I posted Gastroenterologist, Adderall, and Migraine Status on Nov. 2.

I wonder how she got that. I’m doing pretty well right now, I thought. A week later: J. was totally right. I’m barely hanging on.

I’d written about how great I felt on Adderall and was hoping the effects of were not dwindling. They were. After a three-week energy boost, I returned to about 75% of where I was before the June infusions. This might seem disappointing, but it was a huge improvement. (The fatigue was so severe in August and September that I almost bought a walker to get around the house. Walking to the dining table took so much energy that I ate on the kitchen floor. I tripped over the slight ridge in a slate floor tile because couldn’t lift my foot high enough to clear it. I was living with crippling fatigue, yet the severity was still nearly unfathomable. So, even though I was no longer super-charged, I was pretty happy with the result.)

The Adderall also keeps my pain from getting above a 4 most of the time, even during a migraine attack. I’m grateful for this, but the pain has been the least of my migraine woes for the last couple years. (I never thought I’d say that!) Even with Adderall, I am severely fatigued during an attack. The fatigue continues to be even more disabling for me than pain at a 6 or below.

This up-and-down cycle of fatigue (plus cognitive dysfunction) has been going on since early November. I can’t predict how severe the migraine attack that follows eating will be, even when it’s a food I eat frequently. I never know how much energy I’ll have when I wake up or how long it will last. If a few good days follow tweaking something in my regimen (like increasing my magnesium or Adderall), I’ll think I’ve figured it out… then the benefits will dissipate.

I was eager to start a ketogenic diet January 3. It’s a high-fat, low-carb diet that’s used to treat epilepsy in children. (It’s also a trendy diet for body builders and people wanting to lose weight, but the version for epilepsy is a lot higher fat and lower carbohydrate.) The ketogenic diet seemed like a drastic change that could really make a difference. I saw no improvement. As January wore on, the migraine attacks seemed to get even worse. I was demoralized and panicked. The ketogenic diet was my trump card; I had no idea what to try next.

Ten days ago, the dietitian changed my meal plan to increase the fat and decrease the carbs. It’s brought some remarkable, but sporadic, improvement. I still have to take an Amerge and two Midrin every time I eat, but some days I barely notice the migraine at all. Then I’ll do something reckless, like try a vitamin D supplement(!), and have a downturn for several days. I’ve felt really good on about half of the past 10 days. Yet the progress feels substantial enough to have restored my hope.

I’m back to feeling like maybe the ketogenic diet will make a difference. The dietitian said it can take three months for the metabolism to fully shift, so I am hopeful more progress is ahead. Also, there’s room to increase the fat and decrease the carbs in my diet, which could mean even greater improvement. The fatigue is a drag and I wish I could think more clearly, but I’m optimistic that I’m on the right track.

The last year has frayed my optimism, leaving me with tatters that I feared could not be rewoven. Slowly, slowly I’m finding the threads and knitting them back together. I can’t say I’m out of survival mode, but I no longer feel like I’m in constant crisis. With my hope and optimism returning, I feel more able to cope with the setbacks that are sure to come.

By

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.)

By

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.