Migraine World Summit

The holiday season brings countless social gatherings, which can be highly stressful to navigate, especially for those of us living with chronic pain and illness. What are your best tips for preparing for these events? Migraine brains love routine. Utilize the “Migraine Threshold Theory” to reduce as many triggers as possible before the events by using "migraine protectors" such as sleep, exercise, nutrition, and stress reduction. Being prepared for whatever comes at us may help relieve some of our anxiety or cephalalgiaphobia. Our migraine toolkits, stocked with everything that may help us, can be vital for these events (ear plugs, ice/heat packs, sunglasses, safe snacks, medications, neuromodulation devices, extra clothing layers, and anything else that provides a degree of relief or comfort). Having a buddy to rely on and even just give a “help!” glance to can also help. If you are comfortable, discuss your fears with the host before the event and ask if a quiet space or bedroom may be used. In worst-case scenarios, a bathroom or a car may be used to decompress. If your symptoms or medication side effects make driving unsafe, have a Plan B, like a rideshare or a designated driver. Ensure you can eat and drink what makes you feel the best. At many events, we do not know which foods will be served, so it can help to eat ahead of time and bring snacks. Bring a water bottle so you remind yourself to keep hydrated. Don’t feel pressured to drink alcohol or caffeine if they trigger your attacks. Whatever happens, you will be safe. You have done the prep work and set yourself up for success. Celebrate the steps you have taken to eliminate as much worry as possible. Try your best to soak in the love and support of the celebrations. You deserve it. #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

Don't let perfection get in the way of progress. Living with a chronic condition can change the way we interact with almost every aspect of our daily routines- eating, sleeping, exercising, managing stress. And with all of the tips out there, it can quickly become overwhelming. It can feel like our entire lives have become dictated by what we should or should not do for our condition. Yes, there are so many ways we can self-manage our condition. But sometimes this gets too all-encompassing and we need a break. We may need "cheats." And we cannot let a few decisions make us feel like failures, which may then lead to us abandoning our treatment plan entirely. Celebrate your wins but don't beat yourself up over the "mistakes." You are only human. Guilt and self-blame only holds us down. ‘Trigger tyranny’ describes how our lives can easily become consumed by trying to identify and avoid anything which may trigger a migraine attack. We fear our next attack so we avoid any foods that we enjoy, any social activities which may be too loud or stimulating, basically anything that brings joy into our lives. We are plagued with guilt over ‘I shouldn’t have drunk that’ or ‘I knew I wouldn’t be able to do that.’ We end up blaming ourselves for our neurological disease. Sometimes we can do everything “right” and we still may get a migraine attack. Some of us have chronic or intractable migraine, and know that our attacks are almost certainly going to be there despite our best efforts. We need to know that this is never our fault. We have a brain disorder, not a personality flaw. #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

What are your migraine triggers? For those of us with migraine, we all have individual migraine triggers (factors which contribute to initiating a migraine attack) and we all have individual migraine protectors (factors which contribute to preventing a migraine attack.) Our migraine threshold is an invisible line where any additional stimuli will push us over the limit for a migraine attack. All of our triggers push us closer to this line, and all of our protectors allow us to get farther from this line. This threshold is not fixed; it changes depending on the progression of our migraine disease. Some of us experience central sensitization which pushes us into chronic migraine status. Our migraine threshold is likely very low at this point. It may feel like almost anything will set us into an attack. The migraine threshold theory can help empower us to gain back some of the control from our disease. We can identify our triggers and our protectors to help try to set ourselves up for success. If we know we have an upcoming social event which may be very triggering for us, we can ensure that we are eating, sleeping, managing stress, and hydrating properly before the event to help minimize our risk for an attack. It’s important to remember that we are never to blame for our neurological disorder. We can do everything “right” and still get an attack. We can do everything “wrong”, and it is still not our fault. Dr. Tine Poole of Norway explains, “Migraine lives its own life. You can have some triggers and you can avoid the triggers, but sometimes you just get a [migraine attack] anyway. So don’t fall into the pitfall of blaming yourself for it. It’s not your fault. It’s a brain disorder.” #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

#Migraine doesn't go home at 5 PM. It doesn't respect your meetings or deadlines. It strikes without warning, turning simple tasks into monumental challenges. To those silently battling migraine at work, please know that we see you and that you're not alone ?? #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

Did you know that there are phases or stages of a migraine attack? A migraine attack starts at the prodrome phase (hours to days), then the aura phase (5- 60 minutes), the headache / acute/ attack phase (4- 72 hours), then the postdrome phase (24 - 48 hours), then the interictal phase (the time between attacks.) Each individual may not experience all of these phases, and they frequently blend together and may be difficult to pinpoint the beginning and ending of each phase. Prodrome symptoms include cravings, sensitivity to light / sound / smell / taste / touch, neck pain, fatigue, excessive yawning or urination, & irritability. The aura phase occurs in 30% of people with migraine, and involves visual, sensory, verbal, or motor disturbances. These can include visual disturbances like seeing stars, temporary paralysis, temporary loss of vision, numbness or tingling, & others. The headache/ acute/ attack phase includes symptoms like sharp/ throbbing/ head pain, which may or may not be one-sided; sensitivity to light / sound / smell / taste / touch; nausea; brain fog; dizziness; nasal congestion; referred pain in the neck/ face/ jaw; & many others. Postdrome, or the “migraine hangover” phase symptoms include fatigue, brain fog, sensitivity to light / sound / smell / taste / touch, head pain, muscle soreness, gastrointestinal symptoms like nausea, & others. The interictal phase is the time between attacks, where some may still have symptoms, such as light/ sound / scent/ touch sensitivities, nausea, vomiting, fatigue, cognitive issues, mood changes, referred pain in the neck/ face/ jaw/ sinuses, & many others. #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

Have you experienced medication overuse headache (MOH)? How was it treated? MOH can be a major factor in migraine management and can prevent progress of finding relief, while also leading to worsening and chronification of our migraine disorder. However, for some people, they may go off their acute medications and still not achieve any relief. In Dr. Rebecca Burch's 2024 Migriane World Summit interview, she explains: "It's, I think, a little bit controversial because we know that in people who have very frequent headache and use a lot of acute medications, that when those acute medications are stopped, only about half of them actually see a dramatic reduction in headache frequency. The other half of them are simply doing the best they can to treat a really severe headache picture. And when we're withdrawing those medications, we're taking away a treatment that works. I always say that somebody has medication overuse and may have medication overuse headache, but that in the way that I think about it and the way that I write it, I don't necessarily automatically pair those things. I think in somebody who is using a lot of acute medications and has very frequent headache, I think starting prevention is a reasonable idea. And we have evidence from the recent MOTS [Medication Overuse Treatment Strategy] trial showing that starting prevention and talking about withdrawing overused medications is just as effective, and I personally think it's more humane. So that's my approach." #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

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People living with migraine may also live with a comorbid condition of dysautonomia such as postural orthostatic tachycardia syndrome (POTS) and others. In addition, during a migraine attack (or even in the interictal phase of migraine, or between migraine attacks), we may experience symptoms related to the autonomic nervous system (ANS.) The autonomic nervous system is composed of the sympathetic nervous system “fight, flight, or flee,” the parasympathetic nervous system “rest and digest,” and the enteric nervous system, which controls digestion. The autonomic nervous system allows your brain to communicate with your internal organs to control unconscious processes like heart rate, breathing, digestion, blood pressure, sexual arousal, and others. Treatments for dysautonomia must be done under careful guidance from a healthcare provider knowledgeable on dysautonomia, and may include medications, increased hydration, increased salt/ electrolyte intake, monitored exercise, compression garments, and more. #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain

Brain: Initiate migraine attack Stomach: *plays dead* Do you ever take acute medication for your migraine and feel like it does absolutely nothing? This could be due to gastroparesis. Gastroparesis is where your stomach stops contracting and it can happen during a migraine attack. This can prevent acute medication from being absorbed properly and might be why you are not getting migraine relief from your acute treatments. To learn more about the role of the gut in migraine, you can catch up on this interview with Dr Vince Martin from this year’s summit. #MigraineWorldSummit Gastroparesis #Migraines #MigraineAwareness #ChronicPain

What has been your scariest experience with migraine? Experiencing any new symptoms can be terrifying. How do we know when to seek immediate care or if it can wait until our next appointment? A general guideline on when to head to the emergency room is if this head pain is your “first or worst.” For first, think if this headache or other migraine symptoms are unlike any others you have ever experienced. These symptoms may include loss of vision or speech abilities; issues with balance, movement, or levels of consciousness; thunderclap headache; fever and/ or stiff neck alongside your headache. For worst, think of the level of pain or debilitation these symptoms are bringing you, and if this is worse than you have ever felt. When it comes to headache, the ER will need to rule out rare secondary headache causes like tumors or meningitis. There’s other scary symptoms of migraine which may not require immediate care if you and your doctor have previously discussed the symptoms and your care plan. Hemiplegic migraine attacks mimic stroke with symptoms like temporary paralysis and one-sided muscle weakness. Migraine with aura can also present with language difficulties, known as transient aphasia, or “migraine babble.” Alice in Wonderland Syndrome can occur, including troubling symptoms such as depersonalization, and distorted perception of: size of oneself and/ or surrounding objects, the passage of time, sounds, touch, and other factors. Aura symptoms may also include scintillating scotoma, flashing lights, tunnel vision, and even temporary loss of vision. This list is nowhere near comprehensive. What are your scariest symptoms of migraine? #MigraineWorldSummit #Migraines #MigraineAwareness #ChronicPain