Category: Chronic Migraine

Chronic Migraine, Coping

The Dance of Chronic Migraine Treatment: Optimism Peppered With Despair

Kerrie Smyres

“Your optimism is so inspiring,” a reader tweeted last week. I saw the tweet on Monday after a weekend of desperation, frustration, anger, exhaustion, helplessness, and hopelessness.Sunday culminated in a sobfest. Optimism was in short supply. My attempts to control the hypoglycemia weren’t working. Once again, it looked like I’d have to give up on the diet.

Hart and I went to Tucson for the weekend to watch our niece play softball. My blood sugar hit a low on Friday night and I spent Saturday trying unsuccessfully to increase it. Hart went to the softball game; I watched it via webcast. My spirits were low, but the tears were fleeting. When we decided to go home early, I could no longer hold the tears in. I had talked to my niece for five minutes on Friday and gave her a hug. That was it. I won’t see her for another year. Yet again, migraine was to blame.

I’m sick of how much control migraine has over my life. I want to make plans without an eternal asterisk. While the ketogenic diet has made me a little more functional, it requires even more attention than any other diet I’ve done and it’s results are ever-changing. Just when I think maybe I’m onto something good, another piece shifts and it’s back to looking like I’ll have to stop the diet. The fluctuating highs and lows have worn me out.

Monday brought another change to the diet. I’m not counting any chickens (except for weighing the amount of chicken breast I eat with each meal), but it’s going a bit better. This lower ratio may enable me to eat without triggering a migraine attack chronic-migraine-treatmentand avoid hypoglycemia. If it doesn’t, I really think I’m at the end of the line with the diet.

Just a few days ago, that last sentence would have brought me to tears. Today it makes me sad, but not heartbroken. When I responded to the reader’s tweet that I wasn’t feeling too optimistic, she said, “Optimism is like happiness—can’t have it all the time, but it’s whether you can find it again after its lost!”

So that’s where I am—in an ongoing dance of optimism peppered with despair. Chronic migraine pulls me onto the dance floor for this number far too often.

Chronic Migraine, Reader Stories

Migraine Stories: Insights from a Teenager With Chronic Migraine

Kerrie Smyres

Having chronic migraine is always difficult, but living with migraine as a teenager is particularly tough. At the age of 17, Sidney already knows how devastating chronic migraine can be. It’s impact reverberates throughout her life, especially in lost friendships and being behind in school. Yesterday she began a stay at a comprehensive pediatric pain rehabilitation center—please keep her in your thoughts as she goes through this intense process. I so hope she finds some relief. She shares her story up to now with you below. She’s also making notes about her stay at the pain clinic and hopes to share the experience with you. 

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

migraine-teenager-dogsI would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

migraine-teenager-nerve-stimulatorI got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

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

Chronic Migraine, Community, Reader Stories

Migraine Stories: From Chronic Migraine to Advocate & Fundraiser

Kerrie Smyres

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.

Chronic Migraine, Reader Stories

Migraine Stories: Chronic Migraine, Pain Without Suffering

Kerrie Smyres

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 fibromyalgia, Lyme disease, migraine 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.

Chronic Migraine, Coping

Survival Mode

Kerrie Smyres

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.