Quite a while ago, I heard about some research about green light therapy by Dr. Rami Burstein. I filed it away as cool and curious, but I didn’t know quite what to do with it. I looked into finding a lamp that used the wavelength of green light in the study, but wasn’t sure if a regular green LED lightbulb was the “right” light to use.
This winter, NPR ran an updated story on green light therapy for migraine from a different lab – Dr. Ibrahim at the University of Arizona – and it seemed like the idea just blew up! Shortly after, the Allay Lamp popped up in my social media feed. A green lamp made by Dr. Burstein’s team for migraine relief! Color me intrigued.
Listen, I’m not shy. I reached out to the team and let them know I had read the research and been following both Dr. Burstein’s work and the similar research reported in NPR. I asked them if they would consider letting me try a lamp. They actually provided me one at no cost. I’ve had my Allay Lamp since early February. I’d like to consider myself an early adopter.
A disclaimer, the Allay Lamp team did not ask me to post this, but there is a code at the end that gives you – the reader – a $25 discount. I want to be upfront about the fact that, in addition to receiving the lamp at no cost, I am compensated if you use this link (and am grateful for that).
Before I explain about my experience, let me share a bit more about the research. As I said, the lamp’s technology is based on research from Dr. Berstein that showed that a narrow band (530 +/- 10nm) of green light was least likely – among other colors – to worsen migraine. In fact, green light appears to reduce migraine intensity and photophobia. Why? Green light appears to generate smaller electrical waves than the other colors making it less irritating for light-sensitive migraine brains.
How do I use the lamp?
More research needs to be done on the practical applications of green light therapy, but the Allay Lamp team offers some tips. For one, the lamp works best when it is the only light source: try not to use other screens or lights. I try to use it at least 30 minutes a day, typically at bedtime, but also during bad attacks. However, the Allay Lamp team suggests we can use the lamp up to two hours a day, if needed. It may be obvious, but you do need to have your eyes open for the light to be effective.
How does it work for me?
I find that the green wavelength is very soothing during an attack. The biggest benefit is for my light sensitivity. For some attacks, it also feels like the head pain of my migraine attack is reduced a few notches. It hasn’t worked preventively, yet, and the relief is somewhat temporary. However, I’m going to continue to use the lamp to see what benefits I get.
For reference, Dr. Burstein’s team focused more on the acute use of green light therapy for migraine. The team at the University of Arizona, led by Dr. Ibrahim, is focusing more on preventive use.
Given I have migraine attacks most days and can’t use pharmaceutical treatments for every attack, the Allay Lamp is a helpful tool. I also appreciate that there are no side effects (for me, and generally, there should be few for others).
As an aside, the lamp may seem pricey, but it has some great features. It is USB rechargeable and extremely lightweight, making it cordless and portable once charged. I probably charge my lamp once a week, taking into account I often use it on the highest brightness for an hour a day (and occasionally fall asleep with it on).
The brightness is adjustable, but it also has a detachable shade for additional control of the intensity. And for when you aren’t in migraine mode, the light flips over to become a “regular” white light.
June is Migraine and Headache Awareness Month (MHAM). It probably seems strange that such common health conditions need an awareness month. Over a lifetime, nearly everyone will experience a headache at some point (source). Migraine has a lifetime prevalence of about 10% (source) which seems rare, comparatively. Other headache disorders actually are less common: cluster headache, for example, affects about 1 in 1000 people.
Why the need for an awareness month if so many experience a headache of some type over the course of their lifetime? I think it’s the stigma that comes with having a headache disorder. Maybe it is because headache is so prevalent – and so mild in many cases – that other, more serious headache disorders like migraine, cluster headache, chronic headache are so misunderstood. That people believe they can be treated easily, are short-lived, and do not disrupt lives is a product of their milder and more prevalent relatives.
There is also the stigma that has evolved over time related to migraine: migraine is a disease of weak. Whether it was thought to be a condition used by those with privilege to avoid their responsibilities or one of neurotic, overworked women (source).
Stigma also partly led to such issues as having too few headache specialists for people with headache disorders and too little funding for headache research compared to similarly disabling conditions. So for all these reason, we do need an awareness month, despite the prevalence of many headache disorders. It’s time to give them their due attention and shed the stigma.
What are some ways you can do raise awareness in June? There are many. Awareness, like advocacy, can be about others or it can be for yourself. If you’re feeling at a loss, I’ll give you one activity per day. Pick one or do them all.
Tell your story. Post it on social media or just tell a friend. It can be hard to be vulnerable, but sharing a little bit about your headache or migraine story can help normalize it. Tell people: how has having a headache disease affected you?
Join a community. The theme of MHAM this year is “you need community.” Find yours. Online headache and migraine communities are a great way to learn and socialize with others who get it. Here is a great list from CHAMP, check out the Healthline Migraine App, and I’ll put in a plug for my #MigraineChat group (see this link and the Facebook page).
Learn. I know it is cliche, but knowledge is power. I’ve found that the more I know about migraine, the more empowered I feel about my treatment. I know what is out there, how the treatments work, and what is best for me, and I can have better conversations with my doctor. Just a few places to go for information: Miles for Migraine Education Days (all currently free and online), Hope for Migraine Facebook Page, NHF HeadsUp Podcast, or Migraine Again.
Consider checking in with your Headache Specialist. Has it been a minute since you last saw your headache specialist? Have you never seen one? Now is a great time. A whole host of new treatments have come out in the past few months alone. Use what you’ve learned and advocate for better treatment. I realize access can be challenging, so here’s a comprehensive list by Jenn Heater and Shoshana Lipson.
Volunteer. For those with chronic migraine, a great place to start is the Chronic Migraine Awareness – Advocates Removing Migraine Stigma group (a.k.a., CMA ARMS). For others, the U.S. Pain Foundation has dozens of ways to get involved (see the “Get Involved” tab).
Update you Facebook profile frame. It’s a small, but visible change you can make and it may prompt others to ask questions. See this link.
Wear purple. Purple is the migraine awareness color, so wear purple for MHAM. Better yet, make a statement with an awareness t-shirt from my friend Erica and her Achy Smile Shop. Stay tuned throughout June for possible MHAM promotions.
Wear your coolest shades! On the longest day of the year, June 21st, don your sunglasses in honor of MHAM. Check out all the details on the Shades for Migraine page and show you care, wear a pair!
Shine a Light. Have a porch light? Garage light? Lamppost? Change out your regular lightbulb with a purple one. Show your MHAM support to your friends and neighbors.
Run, walk, or just relax with M4M. Support Miles for Migraine in one of their virtual walk events taking place. Because of COVID-19, many of the events have moved online meaning you can lace up or advocate from the comfort of your backyard. Bonus, these events can help raise money through your fundraising. Want to help me out? I’m raising money for the Burlington Vermont event in September and officially kicking off my fundraising. You can also join my team (Against the ‘Graines) as a fundraiser!
Learn a new recipe. Not everyone with headache or migraine has food triggers, but if you do – or think you do – it can be hard to know where to start with identifying them. It can be harder still to think of tasty recipes to try. I’ve become a huge fan of Alicia, the Dizzy Cook, and using my isolation time to try out new recipes. It’s not the best time to show them off to friends and family, but I’m going to be ready when this COVID stuff is over.
Treat yourself. Self care means something else to people with headache and migraine. It’s not necessarily spa days (though it could be). It’s often as simple as taking a break to color and #RallyAgainstChronicMigraine. So take a break and share your art!
Share facts. On your social media, share facts about headache and migraine. A great source is the Migraine Research Foundation page.
Send or request a triage kit. CMA, Inc. offers triage care packages for those with migraine. Send one to a friend for free or request one for yourself for a $10 donation.
Join a clinical trial. Clinical trials are vital for the development of new treatments and the people who volunteer for trials are incredibly important. Have you ever considered joining a trial? I have and, unfortunately, I’m typically screened out for one reason or another. Don’t let that stop you, though. You can go to ClinicalTrials.gov and put in a few parameters to see current trials in headache and migraine. Here’s an example. See also the CHAMP website.
Follow migraine and headache advocates. On Facebook, Twitter, and Instagram, you’ll find a host of healthcare professionals, specialists, researchers, and fellow patient advocates who are talking and sharing resources. Seek them out. And remember, headache diseases are different and they affect people differently. Follow a variety of accounts: various disorders and demographic backgrounds, etc. My social media is all linked above if you need a place to start with finding new accounts.
Write to your elected officials. Tell them your story. Advocate for any number of recent Headache on the Hill “asks” supported by the Alliance for Headache Disorders Advocacy. Check out the HOH page, click through each year of asks, and get writing!
Sign a Petition. If writing your Senator or Representative seems too daunting, a much simpler way to make an impact is signing the Association for Migraine Disorder’s petition for better treatments. Anyone, anywhere can sign.
Share a copy of the INvisible Project Migraine (4th) Edition. The magazine features informative articles about migraine and other headache disorders. However, its greatest value might just be in the profiles of peers with various headache disorders. You’re bound to hear your own story in one of theirs.
Read and Share the CHAMP Language Guide. Language matters. It can help us fight stigma in subtle, but important ways. You don’t need to necessarily actively correct people’s language use, but model it with your own using this guide from the Coalition For Headache And Migraine Patients.
Write a Letter to the Editor. Use those migraine facts from the MRF and AHDA to raise awareness! Make it personal with a little of your own story and how you’re raising awareness. For those with chronic migraine, CMA has developed this MHAM Op-ed template.
Request a Proclamation. Since these take time to review, it is likely a little late to attempt getting a proclamation this year. However, consider requesting official recognition of MHAM or Chronic Migraine Awareness Day (June 29th) from your local or state government. CMA, Inc. has a template for the latter (request info at the bottom of the linked page).
Read a book. Do you want to know more about the history of headache and migraine, and how stigma has evolved over time? Two books I recommend are by Joanna Kempner and Katherine Foxhall.
Print and share information. Free informational materials are available here. Print them and, when safe, leave in your health care providers’ offices, in a shared space at work, at your local library, or on community bulletin boards.
Make a donation. You could make a monetary donation to any one of the dozens of fabulous organizations in the MHAM space, but even easier – set up an Amazon Smile account and choose one as your designated charity. Type in migraine or headache and see the choices: AMF, MRF, MfM, CMA, NHF, Clusterbusters, etc.
Okay, I’m not going to lie, I’m running out of steam here. I need – counts fingers – five more awareness tips to round out MHAM. Let’s see…
Host a screening of Out of My Head. This film was directed by a woman who witnessed her daughter’s experience with migraine and treatments, and delved into the history, research, and stigma behind the disease. You can inquire about screenings or pre-order the DVD on their website.
Arm yourself with Apps. Track the weather, track your migraine attacks, track how much water you drank or if you took you medications, or just relax with meditation tracks. There are apps for everything. These apps can also help you communicate symptoms and treatments with your healthcare providers.
Host an info session. Partner with your headache specialist and host an informational session. You are both experts in different aspects of headache disease, so pair up and share your combined knowledge and experience with others. Admittedly, this might be tough to do now, but file the idea away for when in-person events are safe again.
Support those with Chronic Migraine. On June 29th, wear purple & red in support of those with chronic migraine and #RallyAgainstChronicMigraine with your own rally kit. Supplies are limited.
Stay in the know. Set up a Google alert for migraine news. Once set up, you can get regular summaries of recent migraine (or any headache topic, etc.) delivered to your email inbox.
Whew! We did it! Thirty awareness activities for June & MHAM. Stay connected to the headache and migraine community even after MHAM is over. CHAMP is a fantastic organization that acts as a central repository of resources from its various partner organizations. It has a dedicated MHAM page, from which I pulled many of these ideas. However, beyond that, it has other pages on treatments, access issues, and more. This is a great place to stay informed of activities.
Lastly, many thanks to organizations I’ve linked here for helping curate an amazing line-up of MHAM activities. If you are curious about the background of MHAM, I’ll leave you with a link to a brief timeline of its history. Be as well as possible this month! 💜
Note: I’ve tried to check the links throughout. If any are broken or misdirected, please let me know and I will fix immediately.
Sometimes a few things align to tell me I should finally sit down and write a blog post. Unfortunately, since this one has been brewing, buckle up for a long one. The topic is how to manage your chronic illness flares. This will be mostly about migraine, but a lot of tips will translate to other conditions. I have multiple. Here’s what prompted it or, actually, the three things.
First, COVID-19. The arrival of COVID-19 could have led to a flare in symptoms either because we’ve actually become ill with it, our regular routines have been disrupted, or our migraine treatment plans have been disrupted. On the latter, tele-health has benefits, but can’t replace missed Botox appointments or physical therapy. Managing more symptoms on our own requires some resourcefulness.
Because of missing hands-on PT, I’m taking part in a user study for a new app for chronic low back pain. It combines at-home exercises with learning materials and meditation exercises. The second thing that prompted this post was one of the articles on the app. It suggested having a flare plan. The idea was to think about strategies that had worked in the past to alleviate my back pain so I would be able to recall – and use – them quickly the next time I experienced a flare in my back pain.
Quite coincidentally, a meme made it’s way around my Instagram feed over the past few days asking what five things people used to manage their flares. Sharing strategies right now can be really powerful. Please, just remember that everyone’s experience varies and to check with your doctor before making any changes to medication, etc.
Generally, the past year feels like is has been one long flare. About this time last year, I decided to start tapering off a medication I had been on since 2016. I did it slowly and things were going fine for the first few months. However, by late last summer, I began to experience and increase in fatigue, joint pain, and a greater severity in my migraine attacks. I haven’t really recovered from that. I’m not sure if it was a result of weaning off that medication or if there is an underlying issue at play. I’m still working that out, but for all these reasons, I thought it was time to put down in writing some things that help me or have helped in the past. As many as possible are meant to be accessible despite what is going on right now.
My rescue plan is kind of my “last resort” list. It comes into play when I have had a severe migraine attack for several days and my typical acute (i.e., abortive or as-needed) treatments aren’t helping or I’ve taken them too many times.
1. The first thing I try is a toradol injection. Toradol (or ketorolac) is an NSAID commonly given as part of the rescue treatment you might receive in the emergency room or urgent care. Being prescribed the injections for home use meant learning how to correctly give myself injections. The first few times were a little intimidating, but the relief is worth it. It has saved me from the ER many times.
2. When I am in a prolonged flare that I can not manage with my regular acute or rescue (e.g., toradol) medications, I might request from my doctor a short course of steroids. This is also called a steroid taper because you typically start at a higher dose and work down to a lower dose over a period of anywhere from about 5-to-10 days. When taken too often, steroids can have side effects and while you are on them, you may not be able to take other medications. For these reasons, I don’t rely on steroids as much as I used to, but I always consider them as an option.
If steroids aren’t an option for you, some headache specialists will prescribe short courses of triptans (e.g., frovatriptan), DHE nasal spray or injections, or other medications.
3. I’m lucky that my headache specialist is part of a hospital that has an infusion center. When I’m in a flare, I can have orders for treatment sent to the infusion center. It may take a day or two to get scheduled for an appointment (a drawback), but as long as I can wait it out, this means I get better treatment than I would get in an ER setting (e.g., avoid many of the triggers in the ER). Talk with your doctor to see if this is an option either in their office, at an affiliated hospital, or in coordination with your PCP. If not, see my back-up plan for the ER.
4. If you need to use the ER or urgent care, my biggest tip is to have your doctor write up an ER treatment letter stating a little about your history, current treatments, and rescue treatments that have worked in the past (see my article in My Chronic Brain called: “Documenting Migraine”). In other words, draft an ER treatment plan. Having this with you when you go to the ER or urgent care may help increase the odds that you are given treatments that work for you and not what ever the ER provider on call typically orders.
My strategies vary by symptom so here’s a run down. Nothing earth shattering here:
1. Pain: for head pain, I have an entire freezer shelf of ice packs. My favorite is literally a $4 ice pack from Target that comes with a little stretchy holder with a Velcro fastener. Next to that, I have just about every ice hat that has been marketed for migraine and will rotate through them.
For every other ache, I have about three heating pads. My favorite is a contoured one that fits around my shoulders and neck. I also love topicals like Stopain Migraine gel and Biofreeze.
2. Nausea: For me, I know a flare is bad when the nausea sets in. Otherwise, I’m lucky that it’s a rare symptom. If they work for you, talk to your doctor about the prescription options out there and have one on hand. I don’t have much luck with prescription anti-nausea medications. For this reason, my go-tos are SeaBands, tea (ginger or peppermint), and sipping cold water. I can also get temporary relief by sniffing an alcohol wipe (a trick learned on Twitter from a nurse).
3. Photophobia: I now own three different types of migraine glasses. My review of each is for another blog, but I do think they help with the glare of indoor lighting and computer screens, especially. I set as many apps as possible to dark mode and have the program f.lux (a blue light filtering program) or bluelight filters installed on every device. My newest gadget is the Allay Lamp (another later blog) which emits a narrow wavelength of green light shown to help reduce migraine pain and ligh sensitivity.
4. Phonophobia: They felt like a frivolous purchase, but at Christmastime, I treated myself to a pair of noise canceling headphones. They have become part of my migraine toolkit and I would recommend everyone with migraine who is bothered by sound consider a quality pair.
5. Anxiety: I use several mindfulness and medication apps (Insight Timer, Meditopia) and I also generally have at least one audiobook on loan from my library through the Libby app so I can have a distraction while I’m in bed on rough days.
Miscellaneous Self-Care Tips
1. Stay connected: I haven’t done this yet, but when I was challenged to come up with a flare plan, I decided I would identify a friend or two I could rely on to reach out to when I was really feeling worn down by a flare. These might be friends who also have migraine and can help me troubleshoot or comiserate. Alternatively, they might be long-time friends from “before” who can distract me with non-migraine small talk.
I also have the regular support of a therapist who I’m not 100% sure I mesh with well, but until I find a better fit, she works. And I’ve met a fantastic group of migraine peers through the Miles for Migraine online support groups. I’d encourage anyone to check those out. They are free!
2. Prepare any energy consuming tasks ahead of time (if possible): this biggest one here for me is food prep. I don’t live somewhere that has much food delivery and, even if I did, much of it isn’t safe for me (triggers). To save energy, I batch cook during good periods so that I have a freezer full of easy meals during flares. I have a list of tummy- and head-friendly means and get cooking on my relatively good days. I am always grateful I did during a flare or bad day. I need to work on energy savers for laundry and cleaning. Got tips?
3. Distraction: Keeping my spirits up in a flare is probably the hardest thing. Most of the time, it is about waiting and riding it out. So I need to identify some activities for distraction that I can do even when the migraine is relentless. For me this includes art or even coloring, cuddling my cat, gentle stretching, reading (or listening to) books, games (on my phone, tablet, or with others), mindless television, and now that the weather is improving, very basic gardening (likely wearing sunglasses, a large hat, and ice pack).
What I’ve learned over time is that I can manage things mostly at home and when I can’t, I have a few options I can request from my headache specialist. Knowing this means I don’t get as anxious when I experience a flare. I still have to remind myself that it will pass, it is only temporary, and I will feel better. That doesn’t come naturally quite yet, but I’m less reactive than I was and having a more concrete “flare plan” might help even more.
I now have this list of things to help me ride things out. I hope this helps you, too, and if you have other ideas to add to a flare plan I would absolutely love to hear them. Drop them in the comments!
Huh, wow, I must really not have wanted to post this. It’s now just shy of a year after the birthday this references. In some ways, turning 41 actually seems worse. Over the hill. I actually had a (horrible) appointment last week where someone from whom I was asking for pain management support suggested I join a CrossFit gym because other women who were middle-aged and had health issues went there. There were so many things wrong with that statement, but it being inferred that I’m middle aged for the first time was, uh, kind of sh*tty.
I wrote this last year, a few months into a backslide in my migraine attacks. At the time, I thought it was a temporary flare. It was not. My attacks have become, and remain, daily and pretty severe. The sentiment, however, is the same.
It has taken me a few months to fess up to this, but I turned 40 years old in March (2019). I didn’t want a party. I didn’t even want people to acknowledge it – my family, friends, anyone. I left my birthday on Facebook, but turned off the ability for people to comment. I didn’t want people to send happy birthday wishes when happy was the last thing I was feeling about the occasion.
I also did want to field sentiments like, “Hope you feel better soon,” or “Wishing a cure for your migraines.” The impossible-ness of those wishes are always hard to hear. I was in the middle of setback in my migraine healing; my attacks had been worse since the beginning of the year. Turning 40 during such a period of poor health felt like failure. It felt like a major milestone missed. This wasn’t where I thought my life would be at 40.
It doesn’t help that I feel like I’ve lost years. First, I lost years to school. I spent years… forever… in graduate school. I already felt behind some of my peers because of this. Except that was my choice. Then chronic illness cost me years that I didn’t sign up for. For this reason I feel perpetually stuck in my mid-thirties. That was how old I was when my migraine attacks began to worsen, transitioning from low episodic to chronic and then daily.
Between years of grad school and chronic illness, hitting life’s milestones has just become out of reach. I have do not own a home, have no career, and I’m not healthy enough to travel on exotic vacations. Dating with a chronic illness is difficult, especially in rural Vermont where the selection is… slim.
What I’m coming to realize, though, is that there wasn’t a predestined life laid out for me that I’m missing. It never existed. I’m being unfair to myself to mourn dreams. This is my life and I need to make of it what I can. Right now, it may not seem like much, but I’m working to make my world larger, while trying to be content with what is in it.
I hope that the future brings better health. That seems like the biggest key to regaining some of the life, milestones, dreams I’ve had to let go of over the past few years. Because, while it isn’t productive to mourn those things, I don’t see the harm in hoping they might still be achievable. It’s a subtle difference in mindset.
Now, months after writing this, I’m as sick as ever, but not feeling quite as dramatically bummed about my birthday. It is what it is. I still keep trying to balance the reality of my current health with finding better health. And next week, when I blow out my 41 candles, it’s probably pretty obvious what I’ll wish for.
I’ve written about my migrainetriggers before, but one of last week’s Good Morning America segments on migraine focused on triggers. To say that the focus on triggers – without really delineating them from causes – irked me is probably an understatement. I’ll explain.
When I was episodic – having fewer than 15 headache days a month of which 8 were migrainous, the technical definition – I knew my triggers. They were a string of nights of poor sleep, flying, excess alcohol (especially red wine), stressful situations, and hormonal changes. I could control these in various ways, some easier than others. However, the reality was that for 20ish years, I was having few enough attacks that I didn’t really care about my triggers because the risk vs. reward of tracking and avoiding them wasn’t worth it. In other words, if I slipped up once in a while, “Oh, well!” I took my abortive treatments, they worked, I moved on with life.
Then I became chronic and a headache specialist described the “bucket theory” to me. This is the idea that as we stack our triggers, our bucket becomes overloaded. Once it is full (whatever that point may be for each individual), we have an attack. What can get complicated is the idea that what may be a trigger one day, might not another because you didn’t stack it on top of the thing you did yesterday. So yesterday’s wine triggered an attack, but it was because you slept poorly the night before and there was a storm coming. Last night, you slept great and the barometric pressure has been steady so that glass of wine you had today didn’t bother you.
This get incredibly complex when attacks become chronic and there’s little break in the migraine to know when one started or stopped. Tracking back to what might have triggered it is also tough when some triggers are instantaneous and others slow burn over days.
But what really gets me is the idea that tracking my triggers will even solve anything. I did this for years. Literally tracked in a spreadsheet next to my symptoms all the major triggers. I could make zero sense of it; me, the data analyst. All it did was make me hyper aware of my potential triggers, wondering every time I encountered one, “Will this set off an attack? What about this?” The anticipation itself is likely to be affecting my migraine status.
It also puts a lot of blame for my attacks on me. I could do everything seemingly right and still end up with an attack. I could get a reasonably good night sleep, I could avoid flying, I could avoid my potential trigger foods and drinks, it wouldn’t be during my menstrual cycle, I could be meditating, and virtually not leaving my house. I still wake up with migraine attacks every day. I’m doing everything right. I’m doing things to avoid attacks I didn’t even do when I was episodic, and I still have daily attacks.
The implication – one I put on myself and also periodically get asked by others – is what did you do to trigger this migraine attack? For a long time, I’d try to come up with a specific reason. But recently, I gave up tracking my attacks so closely. Recent research suggests that the brain of people with migraine is hyper-excitable to stimuli. They get stuck in a feedback loop of pain reactivity (central sensitization). They don’t like change. There isn’t a hack to turn us off and back on again to reset it… yet.
And as Jan Southern says often, tracking our triggers can sometimes make our world feel small if we restrict them too much in an effort to stop our attacks.
A shift away from triggers to understanding what pain is and how it is generated – for all people – is much needed. Not only would it help lift the shame & blame, it’d help move away from being expected to shrink our world around migraine.
Maybe it helps, but maybe it doesn’t and we’ve just made our world smaller. One of my toughest triggers to cope with is food triggers. I have a fair number of them. Some trigger migraine attacks. Others trigger my IBS symptoms. My diet is limited and eating outside the home is complicated. Travel is hard. Eating from a menu is nearly impossible. This is incredibly limiting socially. I mourn being able to eat like I used to. There are few things I truly miss, but food and travel rank up there pretty high. They are so tied to the social life I’ve lost.
For me, I’m currently in such a bad flare that my daily baseline is moderate to severe. No. Matter what I do, I will have an attack on any day I don’t take my acute medications. On one hand, I’ve given up trying to not trigger an attack. Why bother. It’s kind of freeing. On the other hand, I’m still just too sick to enjoy it. Ironic.
No matter what, we can’t blame ourselves when when do everything right and something triggers a migraine attack. That’s internalized stigma. Migraine isn’t our fault. Attacks will happen sometimes even if we do everything to minimize triggers and we can’t avoid them all. So weigh the pros and cons, check how full your bucket is, then do what is best for you. But never, ever blame yourself if living life seems to “trigger” a migraine attack.
Over the course of the past week, I’ve seen several interactions around trying new treatments and each has struck me. Normally, those of us with chronic illnesses might get pressure from our healthy friends and family to try new things. An article comes out about a new medication or a diet or gadget is supposed to “cure” our condition, and everyone sends us the link on social media. If we’re being generous, we attribute this to our loved ones being thoughtful and helpful. However, when it is done frequently, it can send the message we aren’t looking hard enough or trying hard enough to get better. Maybe if we just spent more time researching or tried this one thing, we’d finally get better. The reality is, we likely have tried the treatment already or, at minimum, we know about it and we’ve considered the pros and cons.
What’s struck me in the last week is the number of times a fellow chronically ill person has made a comment to the effect of “why wouldn’t you try new treatment X?” Of all the people who you think would understand, it seems like it would be your fellow sick and disabled peers, right? So maybe that is why it stings a little extra when we hear things like “everyone should give every treatment a try” or “you’ll regret it if you don’t try it” or “I try everything… you have to be brave in this game.” Granted all these interactions came up on Twitter where 280 characters limits how well you can express yourself sometimes, but I think it’s worth a reminder that even within the chronic illness community, people are different just like our reactions to treatments are different.
For example, some of us have a higher tolerance for disappointment, the sheer fatigue of trying new treatments, or the experience of bad side effects. Maybe some can shake all that off and start again. Others, myself included, cannot. That all relates to the cost of trying new treatments. It’s not just financial, but emotional and the cost of our time, etc. The energy to try each new treatment draws from a well that isn’t always easily refilled for some of us.
There can also be guilt and pressure. Our friends, family, health care providers, and disability reviewers measure our adherance and commitment to “getting better” by whether we’ve tried new treatments and stuck with them. And new treatments involve a non-zero amount of risk you have to weigh against all your other obligations. What if I feel worse? Will I still be able to work? Care for my kids? Maintain what little social life I still have? Etc. If you, like me, have any amount of anxiety, it can be hard to quiet all those “what ifs.”
We tend to get enough pressure from the outside world to try new things. Let’s be kind to our fellow chronically ill peers when they are considering trying something new. If they ask for advice, be mindful of how you respond. Even if our conditions are the same, our symptoms similar, we all come to the decision to start a new treatment from a different place. All things being equal, even if you wouldn’t make the same decision, be supportive. Gathering information should be an empowering part of the process, not a frustrating one.
The Nerivio, by Theranica, was approved by the FDA in May 2019 as a novel device for acute migraine treatment. The device works differently from other neurmodulators for migraine in a few ways. For one, the band is placed on the upper arm and is controlled by an app on your smart phone. The intensity can be adjusted to your comfort level through the app.
The device is also different because it works by stimulating peripheral nerves in the arm. Messages are transported from the arm to the brainstem’s pain regulation center. This prompts the release of neurotransmitters that block pain signals and stop a migraine attack (Theranica website, 2019). Each treatment lasts 45 minutes.
Results of the trials on people with episodic migraine shows that nearly 67% of those in the treatment group experienced pain freedom after two hours compared to only about 39% in the group that used a similar device that didn’t deliver a treatment (i.e., the control group). About 37% of the treatment group compared to 18% of the control group achieved pain freedom after two hours.
Since the clinical trials included only patients with episodic migraine, the device is not currently indicated for people with chronic migraine. However, some doctors may still be willing to prescribe it. Mine did, so I encourage you to speak to your headache specialist. The barrier might be that the device is currently available in only a handful of headache specialist’s offices around the U.S. (as of October 1, 2019). By spring 2020, it will be available nationwide. There is a form your can ask your doctor to fill out to request the device from the specialty pharmacy.
The device costs $99 per 12 treatments. Currently, the first month is free for most patients. I’m amending this because I’ve seen some people in various Facebook groups say that if their doctor included information stating they are on Medicare, they were denied the free month trial. I am on Medicare and can only assume my doctor did not include any insurance information when she submitted my paperwork which allowed my free month to process without issues.
Because I almost always have some level of migraine – specifically head pain as a symptom – it has been hard to find “good” attacks to treat. The instructions indicate to begin treatment within 60 minutes of the onset of a migraine attack. I rarely can catch an attack early enough to treat within in that window. Plus, the device is set for only 12 treatments. Much like with triptans, this has me hoarding the uses.
I finally decided to try it yesterday. I woke with a mild headache and minimal other migraine symptoms: no nausea, mild light sensitivity, my regular brain fog, and the same levels of body pain and fatigue I’ve been fighting for the past few months. Within a couple hours of being awake, my pain started to rise and other symptoms indicative of an oncoming migraine began. I downloaded the Nerivio app and created an account. That took about five minutes. As the pharmacy rep suggested, I would recommend you do this before you are in the throes of an attack, though!
Nerivio intensity control
Treatment diary screen
I placed the device on my bare upper arm with the sticky pads and secured it with the armband, then started the treatment. The device comes with an extender to fit various arm sizes. After I first started the treatment, I was prompted to answer a few questions about the nature of my attack. I was again prompted to answer these after the treatment. These answers are stored in a diary-like page in the app.
The device produces a slight tingle. Turning it up too high was uncomfortable, but I was able to increase (or decrease) the intensity throughout the 45 minute session as I needed. About halfway through I was concerned I felt no better; however, by the end, my head pain had improved quite a bit. I probably got about 4-6 hours of relief before my migraine began to intensify again. Unfortunately, it got quite bad and I resorted to my acute oral treatments.
I’ll keep trialing this over the next few weeks since one use is by no means enough of a sample to draw a conclusion. However, I’m going to pay attention the length of relief I get vs. the cost. Currently, no insurances cover the device.
Updates will follow, so check back if this is something you’ve been curious about.
I’ve now tried the Nerivio device on six migraine attacks. Probably two were way too late, desperate attempts to stop an attack that realistically was past any treatment other than my oral abortives. The other four attacks were ones I caught relatively early as the migraine was ramping up from my daily headache to full-blown migraine. If I’m lucky enough not to wake up with a full-blown attack, I can usually tell by the qualitative change in my head pain and the addition of other symptoms that one is coming.
Of those four times treating “early” attacks – counting the first which I wrote about above – I think the Nerivio only has successfully stopped an attack once and delayed an attack once. The other two times, the migraine still came on. For me, this seems a little less effective than gammaCore and while gammaCore is significantly more expensive per month, it also gives me more treatments per day/month. In reality, my small personal “experiment” is probably panning out to be about on par with the success rate of some of the new oral abortives that have been approved recently. So time will tell.
I still have six treatments left on my Nerivio, so I’ll post back once I’ve used them up to give you all a final tally.
I am someone who keeps up on migraine research. As new treatments become available, I often talk with my doctor about whether they would be appropriate for me. As a result, I’ve tried most of what is available for migraine. However, if you follow me, you also know I’m still looking for something truly effective. Last spring, I first decided to try gammaCore by electroCore. GammaCore is an external vagus nerve stimulator. Currently, it is FDA approved in the United States for the acute treatment of migraine.
Hoe Does it Work?
GammaCore is placed on the neck while you administer two-minute “stimulations” at the first signs of a migraine attack. According to documentation provided by electroCore, the device works in three ways: activation of the trigeminal nerve with the device has been shown to “reduce glutamate in trigeminal nucleus, suppress neuronal firing in the trigeminocervical complex, [and] suppress cortical spreading depression susceptibility.”
I’ll be honest, I don’t entirely know what that means. Their website describes the vagus nerve as “highway” that communicates between the brain and body, and plays a role in regulating pain. Non-invasive stimulation with the gammaCore device is believed to block pain signals that cause migraine (and cluster headache) attacks.
When I first received my device in April of 2018, the company was offering a one-month free trial. After one month of use, I noticed no difference in my ability to abort a migraine attack and due to the high out-of-pocket cost, I did not renew it. At the time, gammaCore was a disposable device. Each month, a specialty pharmacy sent a new device that was good for one month of use. At the end of last summer, electroCore introduced their Sapphire model. The new device is reusable. Instead of receiving a new device every 31 days, a specialty pharmacy sends a small card which is held up to the device for several seconds in order to “activate” it for a month at a time.
With the new device, electroCore also rolled out a new patient access program for people with commercial insurance. Until July 1st of this year, I had commercial insurance and was able to take advantage of the new patient assistance program. I was on the program for the past seven months, which provided a much better trial of the device. This program provided a copay-free device while the company submitted approval and appeals to my insurance, for a maximum of 12 months or until they received denial of the appeal. [Note: I’ve recently heard from another migraine patient that this program has been discontinued. 1/9/2020]
I received my device and first card in January. I’m only going to speak to the use of the device abortively, that is, to stop a migraine attack. For the first month, I used it most days, to both treat a migraine that was in progress upon waking and to try and abort ones that were building throughout the day. I didn’t notice much difference treating either type.
Going into my second month, I started to notice that while I could still not ever abort an attack that was already in progress upon waking up in the morning, I was sometimes able to stop one from progressing if it started to build throughout the day. This often bought me a good day that would otherwise have turned into a migraine day. For me, medications like triptans or NSAIDs don’t work well in in any form. The few abortives I have work only when taken at bedtime and combined with sleep. Before gammaCore, if the pain was building during the day, it often couldn’t be stopped.
I tend to use gammaCore about two to three days a week when I feel a headache building into a full-blown migraine or the pain simply worsening to a level 3 or higher. I turn the device on, apply electrode gel to the two stimulation surfaces, and administer two two-minute pulses to the vagus nerve in my neck. The intensity is adjustable to my tolerance level and I’ve found a level that seems most effective. If the pain persists 20 minutes or two hours later, I’m allowed to repeat the process. I’ve found no real correlation between the side of the neck on which I treat and effectiveness. Oftentimes, I’ll switch sides.
The sensation is not unpleasant. It feels like a mild tingle along my neck. How do you know if it is properly placed? Many users, including myself, report a slight downward lip tugging. I’ve noticed no side effects save for occasionally, if improperly placed, it will give me the urge to cough. Occasionally, if the device slides too far over a muscle in the front or side of my neck, I can get some muscle contraction and very mild discomfort, but I simply reposition the device over the nerve (approximately where you would feel for your pulse). I will say that, for me to use the device during a full-blown attack typically makes the head pain of a migraine worse, so I’ve stopped trying to abort a migraine that is beyond what I rate about a 4-5.
There was a period during the third or fourth month of trialing the gammaCore that refill cards were backordered. It took about two weeks for the specialty pharmacy to send me my new card. That gap in treatment felt like a bit of a setback. It seemed like it took time, again, to build back up to being able to abort an attack that was progressing. This happened again recently. I’m not sure what would cause a backorder in the distribution of little plastic cards loaded with refill data, but as gammaCore usage grows, I hope they can keep up with demand, especially if others notice that gaps in coverage set them back treatment-wise.
I’m nearing the end of my treatment period with the device. I switched to a government insurance plan that neither covers gammaCore nor allows patients to receive assistance. Devices like these often aren’t covered by commercial insurance, Medicaid, or Medicare. In speaking with electroCore, I have learned they are working to bring insurance companies on board, but acknowledge payors are slow to recognize the needs of migraine patients.
Unfortunately, despite the redesign, electroCore has not lowered the retail price of the device. The out-of-pocket cost would be $598 (edit: per month). As someone who is disabled and works very minimally, I can’t afford that no matter how much the device helps.
I am incredibly disappointed to be losing access to the device in a few days when my current refill runs out. It still will not abort an attack that I wake up with which is about 4 out of 7 days, but it will help 2 to 3 days a week. That is valuable to me. It means 2 to 3 days my head pain doesn’t progress to full blown migraine attack or that I can avoid using medication. This is huge.
Migraine patients and patient advocacy groups need to continue to fight for coverage of medical devices by demanding novel, evidence-based treatments be covered.
If you are interested and have the means or have commercial insurance, I encourage you to talk with your doctor. Having a non-pharmaceutical treatment can be nice. You doctor should be able to help you submit the necessary paperwork to apply for the copay assistance program or you can visit gammaCore.com. The Coalition For Headache And Migraine Patients has also compiled an access guide to help navigate costs. Just be aware of the cost cliff should the assistance run out and your insurance deny all appeals (or you have no or non-commercial insurance).
I’m happy to answer any questions about the device I might have skipped over or left out. Let me know if there is anything you are curious to know.
Imagine there was something in your life that magnified everything. Not a literal magnifying glass, but something with the same effect: sending every thought, emotion, sensation out of proportion. For me, that pseudo-magnifying glass is depression and anxiety. I don’t talk about these much, at least not my depression. However, over the last few months, my mental health has reached a new level of interference where it has become something I can’t just write off to periodic flares during prolonged migraine attacks.
For me, depression had always been situational; it hit when I felt stuck in a situation I wasn’t happy to be in. However, as soon as I could find a way out, the depression lifted. The same had been true with the depression that plagued me during migraine flares. If I fell into a migraine flare, my depression tended to flare with it, but it generally lifted once I became more physically functional and the intractable migraine attack lessened. This was my pattern for a long time.
This spring brought new challenges, though. I hit a major milestone birthday and that brought… feelings. I have also been in a prolonged migraine flare. The icing on the crap cake is that I have some big, unwanted life changes coming up. This has all been enough to result in my depression symptoms packing their bags and staying a while. It isn’t pleasant – actually, that’s an understatement.
Migraine and depression are common co-morbid conditions. Research shows that people with chronic migraine have a 30-50% chance of experiencing depression. It’s easy to say something flippant like, “how can you not be sad if you’re living with that amount of chronic pain and other symptoms.” However, it’s likely more complex than that given the relationship between serotonin, depression, and migraine that I can’t begin to understand.
So over the last few months, as depression has been a constant roommate in my body, it has served to magnify everything: pain, fatigue, anxiety, apathy, and anger. It tells me not to get out of bed in the morning. It tells me not to do anything on my to-do list. It tells me I’m not smart and that people don’t like me. It tells me I’m not good enough. It also tells me I must be doing something wrong since everyone seems to be getting better, but I’m not. In short, depression exaggerates and lies.
It’s Friend, Anxiety
As if that weren’t enough, my anxiety has been unusually bad. Where depression got considerably worse with chronic migraine, I strongly suspect that anxiety has been with me since childhood. Worse, I blame anxiety for getting me into this migraine mess. Where depression tends to tag along after I’m in a migraine flare, anxiety can contribute to triggering my migraine flares.
Like depression, anxiety also likes to lie. Anxiety is a like a little earworm that gets inside my head and gnaws away at reason. It magnifies any little doubt or worry I might have. I know better, but anxiety finds ways to throw all logic out the window. I make up things to worry about. All the CBT training in the world doesn’t seem to matter. I still can’t stop myself from going to these places and thinking these thoughts.
The Dynamic Duo
In making me catastrophize, worry about the future, or worry about things that might or might not happen, anxiety has a way of making me not be in the moment. Likewise, depression has a tendency to make me wallow in loss or become distracted by unproductive thoughts and tasks. All these things take me away from the present. Why do I point this out? It’s two-fold. Being present helps ground me in the moment and what is actually happening. It allows me to sit with the experience, even if it is pain, sadness, and anxiety. Though I can’t always help it, by projecting fear of the future or reliving sadness of the past, I’m creating more suffering for myself. It is often best to just stay present and take things one moment at a time.
Secondly, I’ve begun to think that because anxiety, especially, takes me out of the moment, that it – combined with migraine brain fog – has taken a serious toll on my memory. I’m just not always present and as fully aware of a situation because I’m having anxious thoughts about a million other things. Current experiences aren’t registering fully. I believe this has affected my ability to retain experiences and even remember basic things. I find that incredibly frustrating.
The Physical Toll
It isn’t just the emotional and mental toll. Anxiety and depression have physically effects. Depression is exhausting. Combined with migraine, the fatigue is like nothing I’ve ever experienced. It zaps me of all desire to do anything, literally.
On the flip side, anxiety constantly sends little zaps of adrenaline through my body. Minding my own business, I’ll get little jolts of a feeling of dread in the pit of my stomach for no apparent reason. Often it comes with heart palpitations. And prolonged periods of intense anxiety have had the ability to trigger serious physical health issues like the worsening of my my IBS or chronification of my migraine attacks.
TW: Discussion of Suicide
I’ll close with saying that the toll this all takes is tremendous. I would be lying if I said I hadn’t had thoughts of suicide. I always tell my therapist I would never carry these thoughts out, but I often wonder how I’m going to live another 40 years in this much pain. In fact, people with migraine are at increased risk of suicide. When we have depression and migraine, we’re up against the double stigma associated with having two invisible illnesses people often discount as real or serious.
We have lost people in the migraine community to suicide. So to combat stigma and make it real, I’m talking about my experience with depression, anxiety, and migraine. I hope others will, too. *Note, I’m safe and getting help. I know it is hard to take those first steps, but I hope you’ll reach out if you need it.
If you have read my blog you might have noticed the recurring theme of the counterfactual. The counterfactual is an alternate universe that exists where another version of myself lives out life choosing a different path. Maybe she eats something different or goes out with a friend. Conversely, maybe she doesn’t take that trip. Comparing what I do in the real world with this counterfactual world, I would be able see whether my decision or hers is more (or less) likely to make me feel physically and mentally “sick.”
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
However, this counterfactual world doesn’t exist. I have to make decisions without this information. Living with a chronic illness means making a whole bunch of decisions with the information I have. My entire day is filled with decisions. I’m sure it always was, but I was just less conscious of the emotional toll and impact it had on my well-being than I am now. It is exhausting.
I’ve come to realize a few flaws in my quest for a counterfactual brain, though. These flaws might be keeping me from reaching the elusive “acceptance” stage of my chronic illness while simultaneously making my existence more exhausting than it needs to be.
One flaw is the assumption that I have full control over my physical and mental health. I just got back from a conference where we talked about migraine stigma.* Part of our conversation revolved around the incorrect belief that migraine attacks are our fault. We resolved to address this by being kinder to ourselves.
Recognizing that migraine is a neurobiological disorder and one that can have genetic origins, it is unfair and burdensome to constantly carry the blame for triggering an attack. I try to eat migraine-safe foods, stay hydrated, get enough sleep on a regular schedule, minimize my stress, and manage my mental health, but I can do all those things and I still have some level of migraine symptoms every. damn. day.
That’s not to say I shouldn’t still try to keep a migraine-friendly lifestyle. It likely does help. My brain like consistency. However, I really need to start cutting myself some slack for the migraine attacks. There is only so much I can control and it’s clear that controlling all those variables isn’t making much of a dent in my symptoms. Maybe I can relinquish a bit of the fear over triggers, let go of the counterfactual, and lose some of the anxiety.
The second flaw in my counterfactual is a belief that there is a predestined future out there or, at minimum, another path. I’ve had a hard time letting go of the idea that migraine is stealing away an opportunity – or future – I was “supposed” to have, but didn’t. That’s just not true. Nothing was ever guaranteed. And when my life comes to the point of a decision needing to be made – whether it’s as simple as to eat some food, more complicated like starting a new treatment, or life-changing like moving – I can’t assume that there are two paths laid out and I’m trying to decide which one is better.
I’m probably not being clear. There is a choice, but there is no alternate universe playing out the other choice; no world where my counterfactual is unfolding. I can’t be sad, upset, or regretful, when the choice I made seems wrong and I wish for the other. It doesn’t exist somewhere else. I need to be better about letting it go and moving on.
It reminds me of Robert Frost’s poem “The Road Not Taken,” which is commonly misinterpreted. Many mis-title the poem as “The Road Less Traveled” and choose it as an anthem of triumph in difficulty. However, careful reading shows there wasn’t a “better” road to take or more “challenging” road for the traveler to overcome. They were, in fact, both just as fair and worn about the same. And, though the traveler first marks the other road to take another time, they acknowledge that, given how life goes, it is unlikely they will return.
They later claim that the path they chose made all the difference, when in fact the two were really interchangeable. This statement is likely done out of “comfort or blame;” an attempt to ameliorate any feelings resulting from the choice that had to be made.
Sound familiar? It does to me. The lesson I take is that, if I’m going to imagine that two paths, three paths, infinite paths exists, then it’s best to remember they are essentially the same (at least sometimes) and, therefore, it isn’t worth beating myself up over the outcome.
[I hope this made sense.]
*Full disclosure, I was sponsored by Amgen and Novartis for my travel to this conference, but the thoughts in this post are all my own.