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Signs Your Migraine Treatment Stopped Working — and What to Do If It Does

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Signs Your Migraine Treatment Stopped Working — and What to Do If It Does

When Migraine Treatment Stops Working

Migraine disease can’t be cured, but pain-relieving medication (also known as “acute” or “abortive” treatment) often goes a long way toward stopping the progression of an attack. Sometimes, though, a treatment regimen that has been working well begins to fall short. It may take longer to work. You may find yourself needing repeated or increased doses to obtain a similar effect. Or maybe the medication just stops providing relief altogether.

Unfortunately, this loss of medication efficacy — the technical term is tachyphylaxis — is not uncommon. “I see it all the time in my practice,” says Merle Diamond, MD, president and managing director of the Diamond Headache Clinic in Chicago, and a board member of the National Headache Foundation.

Why Migraine Medication Stops Working

It’s not clear why medication becomes ineffective, reports neurologist Noah Rosen, MD, director of Northwell Headache Center in Great Neck, New York. “It may be related to a higher frequency of use, individual variability, or characteristics of the medication itself.” For instance, some medications have higher rates of migraine resolution and are more likely to provide 24-hour relief, whereas partial treatment may lead to recurrence and eventual loss of efficacy.

Acute medications with more specific effects, such as triptans, ditans, and gepants — all of which act on receptors in the brain — may have a greater likelihood of stopping migraine attacks and a lower chance of tachyphylaxis than non-specific migraine treatments like nonsteroidal anti-inflammatory drugs (NSAIDs), opiates, or barbiturates, says Dr. Rosen. “This is part of the reason it’s good to have an appropriate diagnosis, a good abortive strategy, and good communication with a health care provider to adjust meds as needed.”

When it comes to adjusting medications, a commonly suggested strategy is to try another medication within the same category when your current treatment stops working — for instance, giving one of the other six triptans that are available a shot if the one you’re taking begins to fail.

Unfortunately, there isn’t great evidence to show that this course of action is effective, says Dr. Rosen. Instead, he advises that “it may be worth trying other classes of acute medications, now that we have more options than ever before.”

What to Know Before You Switch Medication

Before you try another type of medication, however, there are a few things to consider about the medication you’re currently taking:

Are you taking it soon enough?

Waiting to treat your migraine can make it more difficult to respond to the medication. “You have to take the medicine as early in the attack as possible to get the desired impact, which is no pain in two hours and the ability to restore normal function without the headache coming back,” says Dr. Diamond, who’s a migraine patient herself. If you take the medication late, its effect may not kick in at all, or may kick in partially, but the head pain and other symptoms can remain. “That means you have to re-dose, which in turn can lower your threshold for your next migraine attack,” says Dr. Diamond.

Are you taking it too often?

Medication overuse can affect people who get migraine attacks, which can lead to shorter and shorter periods of pain relief. To avoid medication-overuse headaches (or “rebound headaches”), NSAIDs like aspirin and ibuprofen should not be used on more than 14 days a month. Drugs in the triptan family — often considered the gold standard medication for acute migraine treatment — should not be used on more than nine days a month.

The recently FDA-approved group of acute medications known as gepants — ubrogepant (Umbrelvy) and rimegepant (Nurtec) are the first two to become available — have a longer half-life than triptans, so medication overuse may not be an issue with them, says Dr. Diamond. Gepants are a type of medication that provides an acute treatment option for migraine patients who don’t respond to triptans or can’t safely take them due to cardiovascular risk factors.

In some studies, the daily use of gepants actually reduced the frequency of migraine attacks.

Are you taking the correct dosage?

“Another thing to pay attention to if you’re getting resistance to acute medication is dosage — I still occasionally see people who are given under-therapeutic doses of their triptans,” says Dr. Diamond. “For example, I’d say virtually everyone I know who takes sumatriptan orally needs 100 mg.” For all of the triptans, Dr. Diamond says very few people respond as well to lower doses that are available.

Why Keeping a Migraine Diary Is Key

To be sure you’re taking the right medication correctly, Dr. Diamond says, “keeping a migraine diary is super-important.” Whether you write it down in a journal or use a free app like Migraine Buddy, the goal is to track what medication you’re taking (including timing and dose) and how it’s affecting you so that your health care provider can help improve your treatment strategy.

Occasionally, patients find that the medication they’re taking to treat a migraine is the source of the problem. According to the American Migraine Foundation, because caffeine can trigger a migraine attack, taking an over-the-counter NSAID that contains caffeine can both not help your current headache and trigger another.

When to Consider Preventive Migraine Treatment

Sometimes you need to rethink how you’re taking your medication — and sometimes you may need to rethink what medication you’re taking. “Some patients take only acute medication because they don’t want to be on preventative medication,” for instance, due to potential side effects, says Dr. Diamond. “But if you take an acute medication and it works for a while and then stops and then you have to go to another one and that one stops, that is sometimes a signal — particularly if you have difficult-to-manage, frequent, or prolonged migraine attacks — that you need some prevention.”

Migraine preventative medication is considered when a patient has:

  • Four to five migraine days a month with normal functioning
  • Two to three migraine days a month with some impairment
  • Two migraine days with severe impairment

Migraine preventative medication, which needs to be taken regularly and not just when a migraine strikes, can help reduce the frequency and severity of your attacks.

Options include drugs that have been used for years, such as beta blockers, antidepressants, and anti-seizure medications, as well as new drugs like CGRP blockers — Aimovig, Ajovy,  Emgality, and Vyepti are currently available  — that were specifically developed to prevent migraines.

Botox injections are also FDA-approved to prevent chronic migraine, which is defined as having at least 15 headaches a month at least four hours a day for more than three months.

Something to keep in mind about preventive treatments: Most studies on these medications lasted for six months or a year; some extended as far as three years.

“In real life, however, many people stay on preventive treatments far longer, although there is little evidence for continued efficacy,” says Dr. Rosen, who notes that recent studies of antidepressants have suggested little utility in longer-term treatment. In other words, sometimes people stay on preventive medication even though they may not actually be helping them anymore.

The upshot, he says: “It’s always good to have regular discussion with your health care provider to ensure that the efficacy has remained good and that the medication remains necessary.”

Be Mindful of Migraine Triggers

Many migraineurs can identify specific things — stress, sleep irregularities, hormones, diet, alcohol, light, and smells are common culprits — that make it more likely for them to experience a migraine attack. “Migraine can be challenging to treat because there can be so many triggers,” says Dr. Diamond.

Regardless of what medication you’re on, it’s important to remember that managing or avoiding triggers through diet or environment can help increase the effectiveness of your treatment, says Dr. Diamond.

If you aren’t aware of your triggers, keeping a migraine diary can help you determine what’s setting them off. It often takes a combination of triggers, such as having a glass of wine when you’re under a lot of stress, to provoke an attack. But once a pattern emerges, it should be easier to avoid things that trigger your migraines.

Interview with Merle Diamond, MD, president and managing director of the Diamond Headache Clinic in Chicago, and a board member of the National Headache Foundation

Interview with Noah Rosen, MD, director of Northwell Headache Center in Great Neck, New York

What to Do When Migraine Treatment Fails? American Migraine Foundation. May 10, 2018. https://americanmigrainefoundation.org/resource-library/what-to-do-when-migraine-treatment-fails.

When to Go to the Emergency Room or Urgent Care for a Headache

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When to Go to the Emergency Room or Urgent Care for a Headache

Very few people ever want to go to the emergency room (ER). That is even more true now during the COVID-19 pandemic when hospitals and the risk of infection all feel pretty scary. In fact, there is evidence that fewer people in the US have been going to the ER since March 2020 compared to before that time.

There is debate about whether that means some ER visits were unnecessary, or if some emergencies just aren’t being addressed now because of the pandemic. For example, the number of people visiting the ER with symptoms of stroke has gone down—but stroke is an emergency and there is no reason why the number of strokes would have decreased. This is worrisome because a person having a stroke could be treated and saved by going to the emergency room who doesn’t may now not survive.

It is important to go to the ER if you think you are having a medical emergency.

No exceptions.

On the other hand, sometimes it is very hard to know if you are really having an emergency. A good rule of thumb is, “When in doubt, check it out!” The best way to do this is to call your health care team, if you have one and go to the ER when you don’t. Better safe than sorry.

 

Headaches Can Be Emergencies

Knowing whether or not a headache is an emergency is especially hard—even for health care professionals sometimes. This is because headaches can be primary or secondary.

A primary headache is a medical condition—with no other cause. To be clear, this is NOT “just a headache.” Primary headaches are conditions such as migraine or cluster headache that cause enough head pain—and often other symptoms too—to keep a person from functioning.

A secondary headache is a symptom of another medical condition, like an infection, head injury, or even some types of strokes. It is called secondary not because it is not important, but because ianother illness happened first, and the headache came second. Not all secondary headaches are emergencies, but some of them are.

 

SNOOP Around Your Headache to Know if It is an Emergency!

Health care professionals are taught the SNOOP memory tool for when to think about whether or not a headache is an emergency, and every day people can learn it too.

SNOOP For Secondary Headaches
Letter Stands for Questions to ask

S

 

 

System review

 

Do you have other medical problems like cancer, HIV, heart disease, or take immune suppressing drugs for psoriasis, arthritis, multiple sclerosis or other conditions?

 

Have you had fever, chills, night sweats, muscle aches weight loss, or trouble chewing?

N

 

 

Nervous system

Has anyone noticed a change in the way you act or said you don’t seem like yourself?

Are you seeing double or seeing things that you don’t usually see when you have a headache or migraine attack?

Are your ears ringing?

Is it hard to lift things you can normally lift?

Is it hard to feel things you can normally feel with your fingers?

Are you able to move normally?

O

 

 

Onset

 

Did it seem like the headache came on all of the sudden with severe pain as soon as it happened?

Is it the first headache you have ever had?

Is it the worst headache you have ever had?

O

 

 

Onset

 

 

Are you over age 65?

Is the person with the headache under age 5?

P

 

 

Patterns

Is this a different pattern of headache, for example you used to have them occasionally and now have them daily?

Does it feel different from your usual headache?

Does it get worse when you cough, sneeze, use the bathroom or engage in sexual activity?

Does it get worse when you sit up, lie down, or move?

For women, if you are pregnant is the first headache during this pregnancy or different from other headaches you’ve had during pregnancy?

If you answered yes to any of these questions, you might have a headache that is part of a medical emergency. Call your health care team or go to urgent care or the ER.

 

These are NOT the only symptoms of headaches that are emergencies.

REMEMBER: When in doubt, check it out!

 

Primary Headaches Might Need Emergency Care Too!

It can also happen that a person’s worst primary headache attack is so severe they cannot tell if it is the same as usual or not. Anyone who has migraine, cluster headache, or another primary headache condition should seek emergency medical care if the headache feels different from what they usually experience.

 

Severe Headaches and Emergency Care During COVID-19

As important as it is to go the ER in an emergency, it is also important not to go if it is not an emergency because this lowers the risk of spreading COVID-19.

Unfortunately, there is a shortage of headache specialists in the US. That means many people with primary headache disorders have a hard time getting treatment for headache attacks that are disabling. Individuals have had to go to the ER to get care even though it is usually very unpleasant because of long waits, bright lights, noise, and sometimes being treated as a drug-seeking individual. It has also been shown that people are more likely to get opioids for headache in the ER even though those drugs are almost never the best choice to treat headache.

But, a silver lining of the COVID-19 pandemic has been easier access to telehealth. This means if you are having a really bad headache attack, you are more likely to be able to call your health care team or arrange video visit and have evaluation and treatment without leaving your home. A call to your health care team is often the best first step to figure out if you can get care without going to the ER.

 

Be safe

If you are having a medical emergency, call your health care team or go to the ER. If you are not sure if it is an emergency, SNOOP for secondary headaches. If you are still not sure or if you are having an unbearable attack, call your health care team. If you don’t have a health care team or can’t reach them, go to the ER. In an emergency, it is safer to go to the ER than it is to stay home, even during the COVID-19 pandemic.

Chemo, Surgery, and Finally Some Good News: I Beat Triple-Negative Breast Cancer During the COVID-19 Pandemic

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Marisa Sullivan Beating Triple Negative Breast Cancer

Walking into my long-awaited lumpectomy surgery last month, I felt an eerie calmness wash over my body.

I was diagnosed with stage 2 grade 3 triple-negative breast cancer on my 40th birthday back in November and have been waiting to get this tumor out of me for six long months.

My surgery was initially scheduled a week after I got diagnosed, when doctors thought my cancer was stage 1. Then more tests came back revealing the aggressive subtype and the precise size and growth rate of the tumor, deeming it a stage 2B.

I thought I was going to get it taken care of in a flash and be on my merry little way. Not so fast. The universe and my body had other plans (yes, they’re pretty tight).

Because the cancer was more aggressive than we originally thought, I learned that I would have to do 20 weeks of chemotherapy BEFORE getting the most loathed “C”-word in the world (perhaps until COVID) removed from my body. I was devastated. I didn’t understand why I couldn’t get that sucker out right away. Some women can and choose to, but I decided to listen and trust my doctors. The standard treatment for this fast-growing cancer is neo-adjuvant chemotherapy, which means going through treatment first.

Here’s why.

First, the tumor was a little too big to do a lumpectomy and having a mastectomy would require too much healing time and perhaps could cause complications and that would risk treatment getting delayed.

Second, there is a higher chance that triple-negative breast cancer could spread by the time you find the lump compared to other types of breast cancer. Luckily, I found mine IMMEDIATELY, which is why  self-exams, routine check-ups, and mammograms are lifesavers.

Third, triple-negative cannot be treated with hormone therapy like other subtypes so chemotherapy is the primary method of treatment. And luckily, it is highly reactive to chemo. Since there is a higher chance that triple-negative can metastasize, it’s very beneficial for doctors (and patients) to see how much of a pathological response the tumor has had to initial chemotherapy in surgery (or how well that the chemotherapy has worked).

Studies find that half of women undergoing treatment for triple-negative breast cancer have a complete response to the treatment, with the rest having a partial response. It can be extremely gratifying to know what you’re facing instead of wondering if the chemo worked but never knowing for sure until you get a surprise a couple of years later with a recurring tumor.

Surgery Day: A Good Omen

That morning, when my husband dropped me off at the hospital just before 5 A.M. in my lucky Jim Morrison shirt and baseball cap, I was so nonchalant about the surgery that I felt like I was just getting dropped off for a reporting gig as part of my longtime career as an entertainment and celebrity journalist. I had actually reported a lot at that hospital during various Kardashian baby births.

Only the subject this time was a bit graver: ME and MY LIFE.

I checked in and my temperature was taken at a little folding table by the elevators, a standard coronavirus protocol these days. I went up and everything went smoothly at check-in. The staff was friendly and comforting, despite the early hour and the mask-wearing society we are all a part of. I got called back and the nurses took my vitals.

My heart rate was an unbelievably calm 62 beats per minute (BPM). Here I was, about to get put to sleep to get my boob cut open in the middle of a deadly pandemic after enduing five months of chemo. I still had zero clue if I was going to live or die due to this torturous wait — and my heart rate was lower than it would be during a meditation at an all-inclusive resort in Cancun. I’m usually so paranoid that even having a UTI brings my heart rate to about 90 so this was bizarre. Maybe it was a good sign.

My anesthesiologist came in to talk with me, then my surgeon.

I told my surgeon that I had a feeling I was going to be okay because my body was telling me so. My surgeon glanced at my super chill heart rate on the monitor and looked at my anesthesiologist and asked, “Have you given her anything yet?” and the other doctor replied, “Not a drop!”

I felt calm and confident. It was unbelievable that this day was finally here, especially because many patients were experiencing delays in surgery due to the pandemic.

She injected me with the anesthesia, and I was off to dreamland.

Waking Up to Good News

When I woke up a few hours later, the nurse immediately went and got my surgeon. She came in and told me the news I had been yearning to hear for months:

“We have to wait for pathology, but I think you are cancer-free. I didn’t see anything in your lymph nodes and there was nothing left to the tumor. It all looks dead and your margins look clear.”

Ecstatic, I asked her if she could please call my mom as she was stuck across the country and frantic. My doctor starts to tell my mom how she’s never seen someone wake up from surgery and be so alert, rattling off a phone number so easily.

My husband echoed that as he saw me wheeled out into the waiting room (they had just started allowing one guest in the lobby, so the receptionist had called him to come back to the hospital). He said I looked like I was ready to party and like nothing had happened.

They prescribed me a pain reliever, but I didn’t take it — not even a Tylenol in the coming days.

My upper left breast area was tender and sore but I have a high pain tolerance and I’m very animated so I thought I would heal better if I was aware of the pain, before accidentally busting out in jumping jacks or a pirouette during one of my lively stories if I was feeling too good.

I was relieved and excited, but I knew that I had to wait for pathology to celebrate. Two sentinel lymph nodes were removed and sent for biopsy, along with the rest of what they had taken out.

Being able to feel my tumor in my breast was both a blessing and a curse throughout my treatment. I could feel it getting smaller at first, which was extremely comforting but then it began fluctuating from what I could feel. It was especially hard not to freak out toward the end of my treatment when the size of the tumor didn’t feel that much smaller. I was under the impression that it would just disappear after a few treatments and when it didn’t, I was unsure at times that the treatment had even worked.

My confidence was not as strong as it was in the beginning of my chemo. That’s why when I felt my body so rested on the day of my surgery, I took it as a sign that this evil intruder was gone.

And my body was RIGHT!!!

My New Identity

One agonizing week later — after some mild celebrating in a parking lot in Venice Beach over Memorial Day Weekend since everything was closed except for takeaway food and drinks —  my doctor (a.k.a. my savior) came into the exam room and told me that I’d had a complete response to the chemo.

The tumor was completely gone. The “lump” I had been feeling for weeks was simply scar tissue and dead cells.

It was such a surreal moment that I didn’t even get emotional. Perhaps because my body already knew, perhaps because I was shell-shocked from going through this battle, perhaps it was because the world was still a disaster between the virus, the political warfare, and the murder of George Floyd that had just happened.

It took me awhile to realize what I had gone through, almost as if I’d had an out-of-body experience. I was still not ready to feel my emotions.

I still can’t believe it. I am a cancer survivor.

This was a very aggressive breast cancer, I had to endure treatment during an unprecedented pandemic, and I was told that I could not have gotten a better outcome.

I went down to the parking garage and woke up my napping husband in the car with the official news. He sobbed and covered his face from my video that was sure to be published on Instagram in less than .07 seconds.

We pulled off on a Beverly Hills side street and called my mom.

“I’m F*CKING cancer-free!” An alarmed senior in a car across the street whipped his head, frowning at the ruckus but then cracked a smile at me when he deciphered why I was swearing like a lunatic.

We got home to an empty apartment as I had thrown everything in storage prior to surgery, knowing that I could finally hit the road to see my family after months of quarantining from cancer and COVID.

Using My Light

My new chapter has begun. We left with packed cars to drive across the country to Florida for the time being, just as riots had begun in my downtown L.A. neighborhood during protests over racial injustice and police brutality.

The world has not been very welcoming these days. People are dying from an unarmed viral enemy and because of the color of their skin. Not to mention cancer and other chronic diseases.

I may be experiencing a sliver of survivor’s guilt for my own personal victory and feeling the need to celebrate but I must focus on myself for now, and allowing me to heal mentally, physically, and spiritually. I keep reminding myself that there’s nothing wrong with that and that I deserve it.

It was difficult for me to find success stories of women with triple-negative breast cancer while I was going through all of this. It’s not that there aren’t people beating this disease daily, it’s just not out there prominently on the web and there isn’t much info about this topic in general.

I’ve been sharing my story with the Global Healthy Living Foundation because I want others out there to see my story and know that there is hope in coming out on the other side.

I will continue to take the world by storm and do what I’m meant to: Help spread love and awareness by using my light, my fighting spirit, and my story to uplift others and see where it takes me on this next chapter of extreme gratitude and fulfillment.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Bagegni NA, et al. Clinical Outcomes With Neoadjuvant Versus Adjuvant Chemotherapy for Triple Negative Breast Cancer: A Report From the National Cancer Database. PLoS One. September 2019. doi: https://doi.org/10.1371/journal.pone.0222358.

Managing Migraine During the Summer: 6 Tips to Alleviate Attacks

Managing Migraine During Summer

There’s so much to love about summer, but for people with migraine disease, it can be a season of misery. I know firsthand, because I’m a longtime migraineur who’s all too familiar with the pain, nausea, and sensory sensitivity that accompanies these neurological events — and summer is primetime for my attacks.

The week I was writing this article, which coincidentally was the first official week of summer, I spent two days in bed with the air conditioner blasting and the shutters closed to the brightly shining sun to help mitigate my migraine symptoms.

While not everyone with migraine is equally summer sensitive, there are a host of reasons that summer is often no picnic for migraine patients.

“The things that really exacerbate migraine for our patients are extremes of heat and especially high humidity,” says Merle Diamond, MD, president and managing director of the Diamond Headache Clinic in Chicago, and a board member of the National Headache Foundation. “When there is high humidity, there tend to be more storms,” she explains. “And when barometric pressure is flip-flopping [as it does before a storm and a shift in weather patterns], that’s a trigger for migraine.”

Lower barometric pressure, which is typical for hot, muggy summer days, is thought to cause a dilation of blood vessels in your brain that triggers a migraine. Even a small decrease in barometric pressure can have this effect, according to one small study of migraine patients who kept a headache diary. After comparing these diaries with the barometric pressure changes noted at a nearby weather station, researchers found a direct correlation between lower atmospheric pressure and the onset and duration of migraines.

As for heat, one Harvard University study found that a nine-degree Fahrenheit increase in temperature correlated with a 7.5 percent increase in the likelihood of a migraine attack severe enough to require an emergency room visit.

But weather isn’t the only thing that may bring on migraine attacks during the summer. Other triggers include dehydration, bright light, certain foods, and even the “lazy days” aspect of summer.

Read on to learn about how to successfully sidestep these seasonal saboteurs and stave off or minimize summer migraine attacks.

Keep cool

You may not be able to control the weather, but you can plan for it. On especially hot days that means being in air-conditioned spaces as much as possible. When you have to be outside, take breaks and wear a hat — it will keep the sun off your head so you stay cooler.

Special hats like those from BluBandoo, which are embedded with crystals that turn into a cooling gel when activated, can help keep you beat the heat for hours. In a pinch, I press a cool gel pack against the back of my neck. Like chilling other pulse points, including the insides of your wrists and your temples, this sends a signal to the part of the brain that regulates body temperature, causing a cooling sensation across your body.

Another stay-cool tip: Change your schedule so you run any necessary errands or exercise first thing in the morning or in the late afternoon or evening, when it’s not as hot. As much as possible, avoid the sun between 10 AM and 2 PM, when it tends to be hottest.

Stay hydrated

For some migraineurs, even mild dehydration — caused by heat or physical exertion — can bring on a migraine attack. “Dehydration probably has multiple effects that lead to migraine, including constriction of blood vessels, abnormal processing of sodium, potassium, and other electrolytes across neurons, and decreased processing of accumulated toxins,” says neurologist Noah Rosen, MD, director of Northwell Headache Center in Great Neck, New York.

The migraine diet recommended by the Diamond Headache Clinic suggests drinking six 8-ounce glasses of water daily. But in the summer, when you can lose a lot of water and sodium through sweating, consider guzzling more to make up for what’s being lost. In one study, people who drank an additional six cups of water on top of their normal daily intake reduced pain severity during migraine attacks and had 21 fewer hours of pain than those who didn’t drink extra water.

Drinking water isn’t the only way to rehydrate: Many fruits and vegetables, including watermelon, grapes, lettuce, celery, and tomatoes, are more than 80 percent water by weight, which makes them great hydration options for those prone to migraine.

Wear sunglasses

Bright, intense light, such as sunlight, can trigger migraine to varying degrees. In some people, it’s one of several common triggers, while in a subgroup of people, it’s the only trigger. “The sun may be a trigger because of the direct effect on light receptors in the eye,” says Dr. Rosen. “The activation of these alone may be enough to stimulate migraine.”

Since it’s usually sunnier in the summer, “being able to shade your eyes is super-important,” says Dr. Diamond. Wear sunglasses or transition lenses and a wide-brimmed hat when you’re outdoors. Blinds or curtains over your windows can block the sun when you’re indoors.

Watch your diet

Some summer staples, including processed meats (like hot dogs and cold cuts) that contain the food additives nitrite and nitrate, can provoke a migraine attack. They also often contain another migraine-triggering food additive, MSG (monosodium glutamate), as do many chips and condiments like mayonnaise, ketchup, and barbecue sauce.

And that rosé you prefer in the summer? It’s naturally higher in sulfites, another potential migraine trigger, than other types of wine. Pickled, fermented, aged, and marinated foods are also possible migraine culprits.

Keep in mind that migraine triggers vary from person to person, and factors other than what you ate or drank an hour or a day prior to an attack can also be at play. The key is to know your food triggers, which you can determine by following a migraine diet or keeping a food diary to document your migraine attacks. Or try removing a suspected trigger from your diet, and then put it back in and see if your migraine symptoms returns. If they do, it’s likely a real trigger for you.

Maintain a regular schedule

While it’s tempting to take advantage of the longer days of summer to shift your schedule and stay up longer, changes in sleep patterns can trigger migraine attacks in some people.

But it’s not just regular sleep that’s important: The “migraine brain” is vulnerable to change, so consistency in all things should be the motto of migraineurs. “Keeping a regular schedule for caffeine, sleep, and exercise can help to prevent attacks by maintaining the body’s homeostasis [a steady state],” says Deena Kuruvilla, MD, an assistant professor in the department of neurology at Yale School of Medicine in New Haven, Connecticut.

In fact, skipping a meal is often more of a migraine trigger than individual foods, so it’s important to eat at your normal times as well. This can be tricky, especially during the summer, when schedules are more in limbo — or during COVID-19, when many people aren’t maintaining a routine at all. It doesn’t matter what you eat — have breakfast for dinner or vice versa. “You just want to keep your meal timing on target as much as possible, even if it’s snacking,” says Dr. Diamond.

Manage stress

Stress is a major migraine trigger, and it doesn’t disappear when the weather warms up. Despite how summer is idealized as being carefree and fun, emerging research shows rising levels of the stress hormone cortisol as the temperature spikes. Some people even get what is called “letdown migraine” because these attacks occur on the first day of vacation or the start of the weekend — when a person has a chance to relax. According to one study, in the first six hours of reduced stress, a person’s risk of getting a migraine attack increases by nearly five times, an effect that lasts up to 24 hours.

The upshot is that it’s important for people to be aware of rising stress levels and attempt to relax during periods of stress, rather than allowing a major build-up to occur, study author Dawn C. Buse, PhDdirector of behavioral medicine at Montefiore Headache Center in the Bronx, New York, said about the research.

While major life events can cause stress, it’s everyday stresses that trigger migraine most. Reducing them isn’t always easy, but taking a yoga class or a walk or simply focusing on your breath for a few minutes are a few quick ways to alleviate anxiety. For other relaxation exercises, check out Dr. Buse’s website.

Dietary Treatment for Headache and Migraine Elimination. Diamond Headache Clinic. https://diamondheadache.com/treatments/dietary.

Interview with Deena Kuruvilla, MD, an assistant professor in the department of neurology at Yale School of Medicine in New Haven, Connecticut

Interview with Merle Diamond, MD, president and managing director of the Diamond Headache Clinic in Chicago, and a board member of the National Headache Foundation

Interview with Noah Rosen, MD, neurologist and director of Northwell Headache Center in Great Neck, New York

Lipton RB, et al. Reduction in Perceived Stress as a Migraine Trigger: Testing the “Let-Down Headache” Hypothesis. Neurology. April 2014. doi: https://doi.org/10.1212/WNL.0000000000000332.

Mukamal KJ, et al. Weather and air pollution as triggers of severe headaches. Neurology. March 2009. doi: https://doi.org/10.1212/01.wnl.0000344152.56020.94.

Okuma H, et al. Examination of fluctuations in atmospheric pressure related to migraine. SpringerPlus. December 2015. doi: https://doi.org/10.1186/s40064-015-1592-4.

Spigt MG, et al. Increasing the Daily Water Intake for the Prophylactic Treatment of Headache: A Pilot Trial. European Journal of Neurology. September 2005. https://pubmed.ncbi.nlm.nih.gov/16128874.

Migraine and Healthcare Disparities

Migraine-and-Healthcare-Disparities-logo

What Are Healthcare Disparities

A health disparity is defined as a difference in the health care received by individuals from different groups. For example, Hispanic people in the US are two and a half times less likely than white people to have health insurance. Although heart disease has been decreasing in the US, Black people are still 30% more likely than white people to die of heart disease. Women are less likely to receive home-based care than men. Children living in poverty are four times more likely to be in poor health compared with children in families with income above the federal poverty line.

The list goes on and there are many other factors termed social determinates of health in addition to the examples above. Social determinates of health have a large impact on the care that people receive for both preventive and disease-related care. This contributes to an overall lower level of health at higher costs in the US compared with other industrialized countries. More importantly, it reduces people’s quality of life and contributes to continued inequality in our society.

 

Health Care Disparities Exist in Migraine

Recently, it has been suggested that the word race should not be listed among risk factors for disease. Instead, it is suggested to state the effects of racism as the reason why a disease is more common, more severe, or less well treated in people from underserved populations.

The effects of racism certainly have an impact in primary headache conditions, including migraine. The rate of migraine or serious headache is similar across the socially defined categories of race and ethnicity. According to a National Health Information Survey in 2015, 17.7% of Native Americans, 15.5% of whites, 14.5% of Blacks and 9.2% of Asians had migraine or severe headaches. It may even be the case that Blacks, Hispanics, and Asians have higher rates of headache because health care disparities lead to underdiagnosis in these groups. Considering that there are near equal rates of headache for whites, Blacks, and Hispanics, the different care for headache each group receives is a clear example of health disparity.

One of the striking examples of healthcare disparity in migraine is the lack of studies examining differences in migraine symptoms, levels of care, and amount of treatment for people from different groups. Additionally, in clinical trials for potential new and recently approved migraine treatments, between 80% and 90% of all participants were white. A comparison of two of the most recent studies on how many people experience migraine (epidemiology) by Lipton et al. showed that almost 90% of the people included were white.

Of the few studies, that do exist, a clear difference in care for nonwhite individuals with migraine can be seen best in a study by Loder et al. This study showed that Black and Hispanic individuals are 25% and 50% less likely to see a health care provider for migraine. They are also more likely to receive the vague and imprecise diagnosis nonspecific headache disorder, instead of a precise type of headache. This is important because different types of headaches have different treatments. Black individuals have also been more likely to be prescribed opioids for headache, which is not considered best-practice treatment.

Overall, it has been shown that Blacks are systematically undertreated for all types of pain, not just headache. This is not simply because of differences in health care access but is also about attitudes and false beliefs about the construct of race. A 2016 study by Hoffman et al. showed that half of medical students and resident doctors who were asked agreed with the statement that Black people have thicker skin, which is untrue. The same doctors who agreed with that statement were more likely to agree that Black people have a higher tolerance for pain (also false) and to give less treatment for pain to Black people.

For Black and Hispanic women, who are twice as likely as men to have migraine (as in all socially defined races and ethnicities) there is the double disparity as women tend to receive a lower level of health care than men.

 

Health Care Disparities and Stigma

The stigma, or social prejudice, around migraine is one of many things that make living with migraine difficult as shown by a 2019 Health Union study in which 47% of people surveyed said that others “don’t understand that migraine isn’t ‘just a headache’.” This stigma plays out on a day-to-day basis as difficulties at work and home. Many people with migraine (from all groups) have a sense that people without migraine feel they should “just tough it out.” This is magnified for people of color considering the false belief about levels of pain tolerance. It also especially unfair to women of color who are not only expected to have higher pain tolerance but also to grow up faster and carry more family burdens sooner than their white peers.

 

What Can Be Done?

Awareness and advocacy have done much to address and reduce the stigma of migraine (although more is certainly needed). So too, speaking up about social determinates of health and advocating for equality are some important steps that each of us can take to make a difference. Education about migraine that reaches into Black, Hispanic, and Asian communities is also important to help individuals go farther than a nonspecific headache diagnosis and thereby access better care.

We at GHLF feel that Black Lives Matter and that we need to continue to raise awareness and work to end health disparities. If you are interested in getting involved in healthcare advocacy join our 50-State Network of patient advocates.

 

References:

Hoffman, Kelly M., Sophie Trawalter, Jordan R. Axt, and M. Norman Oliver. “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites.” PNAS 113, no.16 (2016): 4296-4301. https://doi.org/10.1073/pnas.1516047113

Lipton, Richard B., Aubrey Manack Adams, Dawn C. Buse, Kristina M. Fanning, and Michael L. Reed. “A Comparison of the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study and American Migraine Prevalence and Prevention (AMPP) Study: Demographics and Headache-Related Disability.” Headache 56, no. 8 (2016): 1280-1289. https://doi.org/10.1111/head.12878

Loder, Stephen, Huma U. Sheikh, and Elizabeth Loder. “The Prevalence, Burden, and Treatment of Severe, Frequent,and Migraine Headaches in US Minority Populations: Statistics From National Survey Studies.” Headache 55, (2015):214-228. https://doi.org/doi/10.1111/head.12506

Dos and Don’ts for Telemedicine for Migraine

Dos-and-Donts-for-Telemedicine-for-Migraine-LOGO

During the COVID-19 pandemic, televisits—seeing your health care provider through a videoconference or phone call—became common. As this article is being written, it is too early to say if the widespread use of telemedicine will continue after the risk of getting or spreading COVID-19 becomes smaller. Many health care providers and patients hope that it will continue; others worry that telemedicine may not always be the best option.

 

Insurance and Telemedicine

In March 2020, during the COVID-19 pandemic, the Centers for Medicaid and Medicare Services (CMS) informed health care providers that Medicare would reimburse telemedicine visits via video conference at the same rate as in-person visits. Some copays and deductibles were also waived for people with Medicare or Medicaid. At the end of April 2020, the CMS included telemedicine visits via telephone retroactively to March 1, 2020. The change also allowed telemedicine visits to be provided across state lines so that a person living in one state could receive care from a provider licensed in another state.

Some, but not all, states mandated that private commercial insurers, Medicaid, and Medicare Advantage follow these new policies. It is also unclear if these policies will become permanent or not. As a result, it is important to check with your health care providers office about what will be covered for a telemedicine visit and what copays or deductibles will be owed.

 

Advantages and Disadvantages of Telemedicine

There are many advantages to telemedicine visits, even without COVID-19 to worry about. These advantages include:

  • Receiving care in your own home can give your health care provider a better idea of your typical day and activities than an office visit does, especially with video that allows you to share your environment with the provider
  • The conveniences of receiving care at home include less travel time, more flexibility in scheduling, not having to pay for transportation or parking, and being able to continue activities if your health care provider is running late instead of sitting in a waiting room
  • Access to health care is increased for people who have difficulty moving around or leaving their homes for any reason
  • It can be more comfortable for people to be in their own environment—especially with migraine, which can make it difficult to tolerate light, sound, and smell, or move around too much
  • Safety considerations other than COVID-19 exist, such as bad weather or the risk of falling for some people, which are not present when someone stays at home for care

And, of course, during the pandemic, telemedicine makes it possible to see a health care provider without risking being exposed or exposing someone else to a dangerous infection.

There are some disadvantages of telemedicine visits, however. These disadvantages include:

  • The human touch is important in health care and is lost with telemedicine visits; some health care providers feel makes it harder to comfort their patients
  • Because the provider cannot touch the patient, some symptoms cannot be checked, including important tests in migraine such as testing nerve responses like reflexes and sensation or looking at the back of the eye
  • Sometimes technology fails with dropped calls, slow internet speeds, and low-resolution cameras, for example
  • Privacy is not as protected as it is with an in-person visit because home networks may not have the security that is typically required of health care systems; additionally, during the COVID-19 pandemic, some federal privacy protections were relaxed in order to provide more widespread access to telemedicine
  • For people who need to have tests or see more than one health care team member, telemedicine visits may make team care difficult
  • Some treatments given in the office, like Botox injections or nerve blocks cannot be given remotely

And, in some cases, not seeing a health care provider in person can be dangerous.

Even during the pandemic, it is still critical to seek emergency care if you have:

  • A headache with high fever, especially if you feel confused or disoriented
  • A severe headache that wasn’t there one minute and is there the next (like a thunderclap) and is different from your usual headache or is your first headache ever
  • One arm or one side of your face or body feeling numb or tingling
  • One side of your face drooping
  • Vision loss or changes in vision that you have not experienced with migraine before
  • Swelling of your lips and mouth or a rash after taking a new medicine for migraine

 

Preparing for a Teleneurology Migraine Visit

Dos

  • Prepare the technology in advance (best is to test the day before when possible)
    • If using a computer, check the microphone and speakers
    • Test the internet connection to make sure it is at least 5 megabits per second (5 Mbps); test this at net or with the internet provider
    • Have a backup device ready in case technology fails at the time of the visit (if using a computer, have a phone nearby)
    • Test any specific apps or portals recommended by the provider or staff
    • Use wired internet if you can; if not, try to stay close to the wireless router
  • Prepare other things you might need to have nearby (ask your doctor) including:
    • a scale, tape measure, thermometer, and a way of measuring blood pressure
    • print outs of any test results you might need to talk about
    • the containers for and information about any medicines you take so your health care provider can review doses
    • a flashlight, cotton swabs, and a small bowl of ice in the room because these can be used to test nerve sensation
    • hand weights for strength testing
    • a pen and plain paper
  • Treat your telemedicine visit the way you would an in-person visit
  • Dress appropriately; some people suggest shorts and a T-shirt and slippers so the provider can examine your arms, legs, hands, and feet
  • Find a quiet calm space where no one will interrupt you and where you have:
    • enough space to walk back and forth
    • natural lighting without sitting directly in front of or behind a window so the doctor can see you (and your eyes) well (if you don’t have natural light, a selfie-light can be helpful)
    • have a place to prop up your phone or tablet if you are not using a desktop monitor so the doctor can see you do things with both hands
  • Consider asking someone to sit with you during the visit so they can assist the health care provider or you if that is needed
  • Arrive a few minutes earlier to make sure all your technology is still working
  • Try to use a device with a camera whenever you can; it is almost always helpful for the provider to both see and hear you

Don’ts

  • Forget to charge your device beforehand
  • Wait until the last minute to check your technology or any apps you will need to use
  • Have your appointment from your bed, yard, or porch, or anywhere else that may cause distractions
  • Have your pets in the room
  • Have the radio or TV playing
  • Have other programs open on your device
  • Download anything during your visit
  • Forget to ask about treatments that can be substituted for those given only in person

Dating with Inflammatory Bowel Disease: 24 Confessions About What It’s Really Like

Dating with Inflammatory Bowel Disease

If you’re reading this, chances are you’re among us who have struggled with dating because of our inflammatory bowel disease (Crohn’s disease or ulcerative colitis). Normally, this taboo topic doesn’t get a lot of attention — even within the IBD patient community — but this week it trended on social media in response to a New York Times Ethicist advice column titled, “Is It OK to Dump Him Because of His Medical Condition?

In the column, the advice seeker wonders whether it’s OK not to start a new relationship with someone because of their Crohn’s disease. “I don’t know what to do to support him, and I am worried about the future,” they wrote. “I want to shield myself from the pain, but I also feel like a terrible person for even thinking about it.” 

The Ethicist’s response — which was essentially that while you can’t abandon someone with whom you’re in a committed relationship, such as marriage, it’s OK not to enter into a new relationship with someone if you think you won’t be a good partner to them because of their illness — was widely criticized among those of us in the chronic illness community who felt like it was one-sided advice that didn’t reflect the experiences or perspectives of people with disabilities.

As a twenty-something living with Crohn’s disease, I know how sorely lacking any guidance or information about the challenges of dating with inflammatory bowel disease (or any chronic illness, for that matter) is.

So I quickly turned to the Global Healthy Living Foundation’s IBD Patient Council — a group of volunteer patient advocates that advises us on education and support initiatives — for a more nuanced look at what it is really like dating and being in a relationship with someone who has IBD. To protect people’s privacy, we kept responses anonymous. 

When do you typically tell someone you’re dating about your IBD?

“The second date. I’m an open book and can’t help myself. I want to know right from the start if the other person is down for it and I don’t want to be with someone who gets uncomfortable talking about poop. My disease is such an intricately woven part of my life. I find it impossible not to talk about. I don’t get into the nitty gritty details of my IBD, like being diagnosed, hospitalized, or my treatment on the first or second date — that takes time. But I am upfront right away about having ulcerative colitis.”

“I always tell them very early on. I feel like I have nothing to hide or be ashamed of regarding my ulcerative colitis. Also, many early dates often center around going for drinks or going out to eat. I may come off as picky when selecting a dish, or may not be willing to go out to a bar because I’m in a flare, so I want to make sure the person I’m seeing knows why I may be extra particular with what I eat or where we go.”

“I was actually hospitalized for and diagnosed with Crohn’s disease a month into a new relationship, so I had no choice but to disclose it as it was happening. As much as I tried to get control of the situation, a nurse would come in and say in front of my partner ‘are you still having that very liquid bloody diarrhea?’ Of course, I had no choice but to answer honestly. In a way this alleviated me of the stress of telling my partner, because it was done for me.”

“It usually comes up pretty early. I used to try to hold off on telling people until we got to know each other, but I have learned to accept that it is a huge part of my life and it isn’t worth trying to hide it. As a result of my IBD, I have a lot of dietary restrictions. It is much easier to explain them when I also talk about my IBD. From the very beginning of trying to pick a restaurant, I have to be very involved. I have to look over the menu and sometimes call and ask questions about ingredients if it isn’t a place I have been to before.”

Has having IBD led to any embarrassing situations on a date?

“In relationships yes, but not on a date. Right now, dating in quarantine is hard. I am all of a sudden living with my new partner,and I have diarrhea a lot. I am trying to figure out how to say I’m bleeding or experiencing symptoms, and struggling to communicate it in a way that will not have him worry. I am also worried about having to prepare for a colonoscopy in front of my partner, as I want to keep the romance and sexy feeling.”

“Not really, fortunately. I try to avoid dating altogether if I’m in a bad flare-up. My flares can sometimes include some really embarrassing symptoms, so if I’m not already in something established, I just forgo dating until I’m doing better physically.”

“With my partner, I’ve definitely had moments of ‘I need the restroom ASAP’ or I need to go home and lie down right now. I never get embarrassed in the moment because there is so much else going on with me, and the focus is on my symptoms. And although my partner is always very understanding and helpful in these situations, sometimes I find myself later in the day getting embarrassed about how disruptive IBD can be.”

“ One time I went out to dinner with a date and he asked if I wanted to split a pizza. I told him that I couldn’t eat gluten and he was totally fine splitting a gluten-free pizza. The pizza came and we both were shocked at how good it tasted. It made me a little nervous but it was New York City and I have had some pretty amazing gluten-free food before. We finished eating and decided to ask the waiter. The waiter had made a mistake and had given us a regular pizza. I didn’t really know how my body would react since I hadn’t eaten gluten in three years at that point but I didn’t want to take any chances, so I quickly went home.”

How have people you’re dating responded to learning you have IBD?

“I find that if you are with someone and there is a connection between you, then the response is always positive. When I was dating in a casual way it wasn’t such a positive experience. I even had someone say to me, ‘Eww, what’s that?’ To me that’s an immediate red flag. They are not the right person if they aren’t loving and respectful of my disease. If you are dating someone that isn’t being open-minded and accepting, you need to take a step back. It isn’t their choice to accept it, it’s whether you are up to navigating the craziness with this person.”

“Surprisingly indifferent. I don’t know if it because I downplay its significance or the potential severity when describing it. I actually feel like most people don’t understand what it’s like to live with an unpredictable disease like this. Since I look healthy for the most part, I think people may liken my disease to a bad stomachache that reoccurs every so often.”

“My significant other has always been understanding about my Crohn’s. Whereas I see it as this huge part of me and sometimes feel like it is consuming me, my partner sees so much else in me and helps me see all the great things that make me who I am, aside from my IBD.”

“Most people have responded well. The only time I know that my IBD really contributed to a relationship not working out was when I started dating someone right before I had a flare. I had to cancel a lot of our dates because I was not feeling up to it. He was actually very understanding and offered to come over, but we had just started dating and I wasn’t comfortable with him seeing me like that yet.”

What have you learned about making is easier to date/ be in a relationship when you have IBD?

“The biggest thing for me is being honest and upfront from the start and trying to set the fear aside as it can be scary to not be accepted by a person. I’ve learned I don’t have to be defined by my disease, but it is part of who I am, so I own my story and being the person who I am. While I bring this ‘baggage’ to the table, I remind myself that the other person is probably bringing something too.”

“Not to downplay my disease out of fear of scaring people away. I want whomever I’m seeing to understand what I have is probably different from what they’re used to, but that I’m still like everyone else.”

“I’ve learned that it is really important to be honest when you are in a relationship with someone. It can be scary to be open and vulnerable, but I find that once I am open, I feel so much better about everything.”

“Communicate! I have found that if you are honest, people are much more likely to be understanding. If you don’t tell people what is going on but you are low-energy or not in a good mood, they will think that is your personality. If you tell them you don’t feel well and that is why you are acting a certain way, they will get it. Although not everyone can truly understand what it is like to have a chronic illness, everyone can relate to not being as fun when you feel sick. Also, in the beginning of relationships, I try to stick with shorter dates. I find that those are a lot less stressful and easier to end early if you aren’t feeling your best.”

How do you communicate/navigate your needs for IBD when dating or in a relationship?

“I just do it. If you are in a relationship with someone, in general you should have open communication. And if you don’t, this is a wonderful opportunity to establish that with your IBD and speak your truth. I find it’s also important to remember boundaries, your partner doesn’t have to do everything for you, and you can lean on other support like friends and family.”

“I try to be as transparent as possible regarding my struggles. Sometimes I feel like I suppress talking about my disease so I don’t come off as whiny, but after living with the disease for five years I understand the importance of a partner knowing what the disease entails and them being capable of empathy. It hurts when I’m dealing with someone who comes off as dismissive and just doesn’t seem to get what I am going through.”

“I’ve learned that it is important to speak up because your partner can’t read your mind. If I have specific needs, I’ll ask for the support and explain what would make me feel good now and in the future.”

“It is definitely hard because unless someone has a chronic illness, it is difficult for them to understand. You have to be your biggest advocate and if they can’t be accommodating, then they are not worth it.”

Do you have IBD-friendly date ideas? (Post-quarantine suggestions welcome)

“Museums are always great because you avoid food. If you want to go for dinner you pick the spot and look at menu before. That helps me feel better about the date. Movie nights in are always a fun option and you can make it special by still get dressed up, setting the table, and cooking your favorite foods.

“If you’re starting to date someone with IBD, be courteous and insist that they choose the spot to go out to eat as they probably know what foods work best for them and what would make for the most comfortable experience. Getting to know someone new is already nerve-wracking enough, but for someone with IBD who is afraid they may eat something that can make them run in and out of the bathroom, give them terrible gas, or result in stabbing cramps it’s even harder at times. For those who have IBD and are navigating the dating world, be transparent about your needs are even if you don’t fully disclose your disease upfront. Personally, these days I like to go do something different from the typical bar date like going to a movie, a sporting event, or visiting a museum.”

“I always find it helpful to do an activity first and save the meal for later in the date. This is because food can be a trigger for symptoms, or I might want to rest after. It can be fun to mini golf, see a movie, take a walk around and then go to a restaurant or even grab food to go and eat at home after.”

“Over the years, I have collected a list of good restaurants that I know I can get food that won’t make me sick. I usually offer a couple of suggestions and have the other person pick. I do feel the best when I eat food that I cook myself, so having a date over and cooking together is always a nice option.”

Become an IBD Patient Advocate

One of the best ways to help people understand the challenges of living with a chronic illness like Crohn’s disease or ulcerative colitis is to raise your voice by becoming a patient advocate.

The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.

How to Safely Fight for Racial Justice If You’re Immunocompromised or at High Risk for Coronavirus

How to Fight for Racial Justice When You May Be High Risk for Coronavirus

It is unbearably painful to see repeated instances of social injustice and hatred in our country. You may feel deeply hurt, angered, or frightened for yourself and your loved ones because of widespread racism against our black communities, but unable to walk alongside others like you who are determined to raise their voices against racism because of underlying health issues that can put you at increased risk for COVID-19 complications.

We understand that showing up to fight anti-black racism and to support the Black Lives Matter movement through participation in demonstrations in the middle of a deadly pandemic is not an easy to make decision to make for many of us who live with underlying conditions.

The Global Healthy Living Foundation and CreakyJoints, our arthritis patient community,  conducted a poll of our members to understand what people were planning to do about the anti-racism protests, especially given that many of our members have been strictly quarantining for months. (In fact, a separate recent poll showed that more than half are still only leaving their homes to get essential items, if they’re even leaving their homes at all.)

While 5 percent of more than 500 respondents said they are participating in the ongoing racial justice demonstrations, 39 percent said they want to participate but feel they cannot due to the continued risk of coronavirus. Many are also coping with physical issues, such as being unable to stand or walk for lengths of time due to their arthritis or chronic pain conditions.

However, many people in our communities are finding other ways to support thousands of others in our fight for racial justice — and we are supporting our members, however they choose to get involved.

Because the Global Healthy Living Foundation firmly stands with the Black Lives Matter movement and because we are committed to fighting racial injustice and health care disparities, we issued a statement about this last week as well as a response to some of the hostile feedback that followed.

In an anonymous free-response section of the poll, one member noted: “I am in a COVID-19 high-risk group, so I have not been involved in the physical demonstrations, but I have made several small donations to the NAACP and Southern Poverty Law Center.”

Another member is researching ways to make a difference. “Having four autoimmune conditions, it’s not possible for me to be in a public gathering due to the risk of COVID-19, despite my strong desire to join the demonstrations,” they wrote. “I have been researching what I can do to support the anti-racist cause from a distance.”

Protests are one of the many ways Americans are making their voices, anger, and pain heard after the unjust deaths of George Floyd, Ahmaud Arbery, Breonna Taylor, and countless other black individuals in the United States and around the world. There is much that still needs to be done to eliminate inequality, systemic racism, explicit and implicit biases, institutionalized violence and police brutality in our society — and taking action drives meaningful change.

That said, gathering in large groups for any reason during COVID-19 carries its risks. This is particularly true if you are immunocompromised or live with a chronic underlying health condition that puts you at higher risks for severe infection and complications from COVID-19

“I’m concerned that we had mass gatherings on our streets when we just lifted a stay-at-home order, and what that could mean for spikes in coronavirus cases later,” said Washington, D.C. Mayor Muriel Bowswer on NBC’s Meet the Press. “In fact, I’m so concerned about it that I’m urging everybody to consider their exposure — if they need to isolate from their family members when they go home and if they need to be tested — because we have worked very hard to blunt the curve.”

How to Peacefully Protest Safely If You Have Underlying Health Conditions

The New York City Department of Health and Mental Hygiene shared tips to reduce the risk of spreading COVID-19 during large protests, which include:

  • Wearing a face covering
  • Staying hydrated
  • Using hand sanitizer
  • Not shouting (opt for signs and noise makers instead)
  • Staying in small groups
  • Keeping six feet from other people or groups

Our poll respondents who said they are participating in anti-racism demonstrations reported taking several of these measures to stay safe from COVID-19: 84 percent said they are wearing a mask, 60 percent are actively maintaining six feet of distance from other protesters, and 24 percent are wearing gloves.

Echoing the tips from the New York City Department of Health and Mental Hygiene, an open letter first drafted by University of Washington infectious disease experts and signed by hundreds of public health community professionals noted: “Staying at home, social distancing, and public masking are effective at minimizing the spread of COVID-19. To the extent possible, we support the application of these public health best practices during demonstrations that call attention to the pervasive lethal force of white supremacy.”

Some prevention strategies, however, may not be possible during protests — which have drawn hundreds of thousands in cities throughout the United States and around the world.

“I can see how some of these tips can be difficult to follow,” Elaine Nsoesie, PhD, an assistant professor of global health at Boston University, told NPR. “For example, if you are angry or frustrated about an issue, you want to express that feeling, and speaking is one way of doing that. It’s also hard to keep six feet of distance at a protest.”

What’s more, being outside doesn’t eliminate the risk of spreading COVID-19, though it is lower than being in a confined space. “Risk of transmission is lower in open spaces, but wherever there is a gathering there is still the risk of transmitting the virus,” said Dr. Nsoesie.

This is especially important to keep in mind if you may have a compromised immune system or comorbidities associated with COVID-19 complication, such as heart disease, lung disease, kidney disease, or diabetes.

How to Help the Fight for Racial Justice Aside from Protesting

If you can’t join protests because you are in a high-risk group for COVID-19 or have physical health issues, there are many other ways you can actively take a stand against racism and the systemic problems deeply rooted in American history and society. Here are just a few ways to support black communities right now.

1. Sign a petition

You can make your voice heard from home by signing a petition that demands change. Here is a sample of the many petitions available now:

George Floyd Act: Petition for Law Reform: This petition calls for law reform confronting police education, training, evaluations, procedures, and human rights and is designed to protect against prejudice, racism, and police brutality. It includes a demand to prohibit chokeholds and strangleholds and for police officers to be required to intervene when other officers use an unreasonable amount of force.

Make Acts of Racism Acts of Domestic Terrorism: This petition includes a demand to expand the definition of terrorism to cover “domestic racist organizations” and to immediately take law enforcement officers who kill a civilian in the line of duty into custody until a full investigation can be completed.

Demand Racial Data on Coronavirus: This petition includes a demand for the government to collect and release demographic data on COVID-19, and for the U.S. Centers for Disease Control and Prevention to aggregate and release data that provides black individuals with information and resources targeted to their needs.

More Black Lives Matter Petitions: This list of more than 300 petitions can help you support Black Lives Matter from home.

2. Get informed by reading books or watching films about racism

You can only learn so much by scrolling social media headlines. One powerful action you can take right now — particularly if you’re not black — is to learn more about the anti-racism struggle in America and around the world.

Many books and films explore and explain the roots of racism, violence, and white supremacy in our country. They can also help you celebrate black voices and better understand the triumphs and struggles of black people in America. Check out:

Books can start necessary discussions with the children in your life about diversity, equality, and racism. Buy diverse children’s books to share with the young people in your life as well. Ruby Bridges, the first black child to integrate an elementary school in New Orleans in 1960, has said: “Racism is a grown-up disease, and we must stop using our children to spread it.” Check out:

3. Donate to the cause

There are many organizations investing in black communities, purchasing protective equipment for protestors on the front lines, and much more. Here are just a few ways you can help:

Donate to Minnesota Organizations: This list from North Star Health will help you donate to organizations who are helping oppressed communities fight racial injustice in Minnesota, where George Floyd was killed. These organizations include Black Visions Collective, Reclaim the Block, and Black Table Arts.

Donate on a national level: There are also several national organizations you can donate to, including Black Lives Matter, NAACP, Equal Justice Initiative, Unicorn Riot, and Campaign Zero.

More ways to donate: This list of 115 ways to donate in support of black lives and communities of color per New York Magazine is organized by various causes, including victim memorial funds, community enrichment organizations, policy reform organizations, police reform organizations, and black LGBTQ funds.

4. Support black-owned businesses

Using your wallet to support black communities is a powerful way to create change in our society. Actively look for ways to support black business owners with these resources.

Buy from black businesses: You can find a number of businesses owned by black Americans on BlackWallet, Official Black Wall Street, and WeBuyBlack. Soon, businesses will be able to identify themselves as black-owned on Yelp, which will help you support local entrepreneurs. Here are just a few incredible businesses from which you can shop online now:

Diop: This Detroit-based clothing label offers diaspora-inspired streetwear and fabric face masks inspired by Mali mud cloth. Diop is donating a portion of mask proceeds to coronavirus relief initiatives.

Cherry Blossom Intimates: This company helps breast cancer survivors find the best post-mastectomy bra and breast form.

Beneath Your Mask: After the founder of this beauty brand was diagnosed with systemic lupus erythematosus (SLE) in 2011, she sought an all-natural approach to beauty and wellness. Her beauty products are non-toxic, organic, and revitalizing.

McBride Sisters Collection: Founded by sisters with a passion for wine, this brand offers premium wines from California and New Zealand.

Red Bay Coffee: You can buy a vast array of quality coffee, apparel, and drinkware from this company, which aims to employ people traditionally left out of the specialty coffee industry — particularly people of color, formerly incarcerated individuals, women, and people with disabilities.

Invest with black banks and credit unions: Bank Black will help you find black-owned banks and credit unions. OneUnited Bank is America’s largest black-owned bank that aims to make financial literacy a core value of the black community.

 5. Contact your representatives

Make your voice heard from home by contacting government representatives at all levels (local, state, and federal) who control budgets and policy in the United States. Write, call, or email your representatives to condemn and demand action on issues such as racial injustice and police brutality.

These resources will help you get started:

For more ways to stay connected to the Global Healthy Living Foundation and take part in our grassroots advocacy, including against racial health care disparities, join our 50-State Network.

Black Lives Matter: Why We Must Keep Showing Up for Racial Justice and Equality

Black Lives Matter

Racism is a pandemic. Black Lives Matter. Period.

The Global Healthy Living Foundation released a statement this past week explaining our position and discussing the differences in health outcomes between the black and white community in the United States. Read it here.

We hoped this would provide some comfort and support for our community members who are struggling right now.

We aimed to let our black communities know that we — a non-profit organization that promotes advocacy, research, education, and support for people living with chronic illness, including advocating to end health care disparities — see you, hear you, and support you.

We are not naïve. We expected that this response would upset some folks. And we knew some people would leave the Global Healthy Living Foundation and the CreakyJoints arthritis patient community.

While this is sad, we are fine with those folks leaving. Our message is right and we believe that we are on the right side of history.

We do hope, though, that those who may be uncomfortable with our statement stick around so we can learn and grow together.

What we didn’t expect was the hostility that would pour into our inboxes as a result of our statement.

We are sharing with you some of this feedback (anonymous, of course) because you may encounter similar sentiments in your own personal conversations about racial justice and equality, whether on social media or in private discourse.

We hope our thinking may provide support in how you can process and frame your reaction.

Content warning: Racism and profanity below.

 

“Drop dead you are a *** virus. Don’t email me again losers.”

Response: We hope that one day our world is vaccinated against bigotry and oppression. Until then we will continue to raise our voices about racial and health care inequality.

 

“Never again will this organization or your charities get a penny or support from us.  Never.  When my hand is healed up, I am posting your article on the internet showing your abandonment of law enforcement. All lives matter.”

Response: GHLF never asks people for donations and never will. Of course, all lives literally matter, but right now we are talking about only black lives. It would be like someone saying, “Why are you talking about arthritis during Arthritis Awareness Month? We need to talk about breast cancer or HIV.” It is OK to advocate for a specific cause — it doesn’t take away from the fact that other causes still matter. (And we hope your hand gets better. Here’s a resource that might help.)

 

“I assume you are taking your lead from other organizations that are sending out similar emails, but if you were to check with the legal division of your company, you would discover that this is inappropriate! I do not wish to ever hear from you again for any reason unless it is to apologize to me for the distress your email has caused me!”

Response: Dear Karen, you are speaking to the manager. We are taking our lead from people of color who live with chronic disease and disability. We are taking a stand against people who believe this is a political issue. This is not about politics. This is about social justice. Anyone who thinks that matters of race and justice have nothing to do with health is mistaken. In order to help do our part, our organization will continue to research and highlight the ways in which societal factors influence health outcomes. We can use your help, so we hope you stick around to join us.

 

***

We will continue showing up for what we believe, and we will continue to do this work within the arthritis, disability, and chronic illness community.

To join our community, sign up for the Global Healthy Living Foundation’s support program. You’ll receive opportunities to make an impact at local and federal levels, and you’ll receive resources to help you navigate these trying times.

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To learn more about GHLF, download our latest quarterly report.

ArthritisPower® Data Shows that Patient Engagement with Digital Tools Enhances Understanding of Arthritis – Welcomed News Amidst Worldwide Pandemic Forcing Digital Engagement

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

CreakyJoints® Research at the European League Against Rheumatism (EULAR) European Rheumatology E-Congress 2020 Focuses on Disease Management Strategies

UPPER NYACK, NY (June 3, 2020) – Today CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, is presenting data that demonstrate how integrating digital tools into patients’ arthritis management strategies can improve understanding of arthritis. These data were shared during the European E-Congress of Rheumatology 2020, presented virtually by the European League Against Rheumatism (EULAR) starting June 3. The patient-centered research, conducted prior to the COVID-19 outbreak, illuminates paths forward for patients entering or already in their new digital realities.

“Smartphones, wearables, and social media are ubiquitous in our daily lives and we are increasingly comfortable using these tools to help us communicate with each other and access information, including about our own health,” said W. Benjamin Nowell, PhD, study author, Director of Patient-Centered Research at CreakyJoints, and principal investigator of ArthritisPower. “The data we are presenting at European E-Congress of Rheumatology 2020 examines how digital technology can be integrated into arthritis management and how it can be used to conduct arthritis research. We wanted to learn more about the feasibility of patients using a smartphone app and commercial grade fitness tracker to share daily data over an extended period of time, as well as gain insight into which aspects of their condition patients prefer to track digitally. Our findings help inform future clinical trials and disease management strategies, and they come at the right time as we all adjust to our lives in a COVID-19 world.”

In the poster titled, “Which Patient-Reported Outcomes Do Rheumatology Patients Find Important to Track Digitally? A Real-World Longitudinal Study in ArthritisPower,” patients with rheumatic disease used the smartphone app of the ArthritisPower registry to choose patient reported outcomes (PROs) that they felt were important to track for their condition. Participants were asked to make an initial selection at baseline, and then reviewed their selections at the end of months 1, 2, and 3, when they were given the option to either continue tracking the same symptoms or to change to different measures. A total of 140 participants completed all four timepoints of the study. In order of priority, the top 5 symptoms ranked by participants across rheumatic conditions as most important for tracking were fatigue, physical function, pain intensity, pain interference and duration of morning joint stiffness.

“Not only did this study tell us about the symptoms rheumatic disease patients feel are most important to track, we saw good participation across the study period, meaning that respondents felt comfortable using the ArthritisPower app to participate in longitudinal research,” added Dr. Nowell. “This is especially important as these and other instruments will be pivotal for successful telehealth integration into patients’ and healthcare providers’ lives.”

Smart Devices Aid in Data Collection

The Digital Tracking of Arthritis Longitudinally (DIGITAL) study is evaluating the use of electronically captured patient-reported outcomes (ePRO) and passive data collection from a Fitbit device to identify disease worsening in a real-world study of participants with rheumatoid arthritis. In the poster titled, “Participant engagement in an ArthritisPower real-world study to capture smartwatch and patient-reported outcome data among rheumatoid arthritis patients,” researchers assessed participants’ adherence (30 days, n=170) to required daily digital tasks, such as wearing and syncing a smartwatch, and answering questions on a smartphone app. Of the digital tasks in the main study, participants were most adherent at wearing and syncing the smartwatch, with 93% wearing it at least 80% of the time. Participants were least adherent at completing daily PRO assessments with 70% of participants providing them more than 70% of the time. Overall, 67% of participants achieved composite compliance, meaning that they provided more than 70% of the data across all data types.

Another poster stemming from the DIGITAL study, “Using self-reported outcomes to detect new-onset flare in a real-world study of participants with rheumatoid arthritis – Interim results from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study,” evaluated whether patient-reported new-onset flares could be detected using a classification model applied to data collected from participants with rheumatoid arthritis in a digital real-world study. The training data included 58 new-onset flares in 50 unique participants to build a logistic regression model that was applied to test data that included 64 flare outcomes in 52 unique participants. The best fit model that was able to correctly classify new-onset flare 78% of the time included the single-item patient-reported difficulty in participating in work, family life and social events from the OMERACT RA FLARE instrument and scores from the daily pain numeric rating scale. The DIGITAL study and top PROs study were supported by Eli Lilly and Company.

“What we hope to learn from the DIGITAL study and subsequent confirmatory studies is that passive activity data could be used as an objective measure of pain,” stated Jeffrey R. Curtis, MD, MS, MPH, Harbert – Ball Professor of Medicine, Division of Clinical Immunology and Rheumatology, and Director, UAB Arthritis Clinical Intervention Program (ACIP) at University of Alabama at Birmingham. “Beyond research, similar approaches could be used for patient monitoring in clinical care if we can demonstrate that certain passive measures from wearables are connected to changes in disease activity.”

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,700 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with nearly 30,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.