I’ve been tuning in to the Migraine World Summit since I first heard about it, shortly after I got sick in 2016. I couldn’t wait for the summit to drop in 2017 and decided to purchase it, along with 2016’s summit, so that I could catch up on everything I missed. Half of the proceeds go to migraine research and migraine groups that work to move education and awareness forward. Isn’t that awesome? In addition, learning everything I can about vestibular migraine helps me gain better control over my symptoms. The summit always leaves me feeling more empowered and hopeful. If you’re interested in purchasing the summit you can do that here. Here are the 12 points that really resonated with me at this year’s summit.
While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
1. Migraine language is important
Hands down one of the most important things I learned at the 2019 Migraine World Summit is that most experts do not use the word migraines. Can I please say that just one more time so that it really sticks…migraine experts do not use the word migraines! This makes me want to sing with joy from the rooftops. Why? Because they understand that migraine is a neurological disease, with no cure that we have all day, every day. We don’t get “a migraine” or “migraines” we HAVE Migraine. Even when we’re not experiencing symptoms, we have to work on suppressing an attack through trigger avoidance, lifestyle changes and for some of us, daily preventative medication(s). I mean honestly, what other disease allows people to use the name of the disease interchangeable with a symptom of it? It’s enraging if you really think about it. All you have to do is replace the word migraines with other disease names to see how ridiculous it sounds. If you heard a friend say “My son had so many epilepsies last month” or “My mom has so many fibromyalgias” or “Gosh my multiple sclerosis’ are killing me.” Do you hear how awful that sounds? Using the word migraines is just as insulting and contributes to the stigma of migraine being just a headache. One thing I know for sure is that the readers of Migraine Strong and The Dizzy Cook are some of the bravest, smartest and strongest people I know. We can make a difference together in educating the public about what Migraine actually is. By banding together to fight the stigma we can teach the world to have the same respect for Migraine as they do for any other neurological disease. So what can we say instead of migraines? Many experts that spoke at the summit used the phrase migraine attack. I think using the words migraine pain, migraine episodes or migraine days would also work. Chose words you’re comfortable with, but PLEASE stop using that cringy word migraines. If we make this one little change, together we can make a huge impact on raising awareness and reducing stigma.
2. & 3. Dr. Dodick’s talk on controlling unresponsive chronic migraine
2- Another thing that was music to my ears is when I heard Dr. Dodick mention that new acute (meaning abortive) medications, made just for migraine are coming in the next one to three years. I KNOW! This is so exciting right? If you’re just holding on trying to limit your abortive medications to 10 days a month, don’t lose hope. We have a LOT to look forward to! Because, not only are they coming, you won’t have to worry about limiting their use for fear of inducing central sensitization or rebound either. In fact, Dr. Dodick says that the more you use them the more success you’ll have at controlling migraine symptoms and the fewer pain days you’ll get. Well now we’re talking…sign me up!
3- Dr. Dodick just oozes goodness in my eyes. He was so honest in discussing how little training physicians receive in migraine medicine. Primary Care Physicians receive zero hours yet one in four of the patients sitting in their lobbies has migraine. An important fact to consider when choosing a doctor is to understand that doctors really do want to help you and they want you to get better. But, in the first 9 years Dr. Dodick was in medical school to become a neurologist he received just two hours of training in migraine medicine. His point is that although SO many PCP’s & neurologists want to help you, they haven’t properly learned how to manage the most common disease they see in their practice (25-30% of neurology patients have migraine.) Dr. Dodick wonders how doctors can NOT learn about something that affects 40 million people? I can’t help but wonder the very same thing. Something he’s going to be working on next year, is fighting to make migraine education mandatory in the curriculum of every medical school across the United States. Isn’t this the best news ever? I’m pretty sure I can hear you cheering right now!
4. & 5. Consider a multidisciplinary & multimodal approach to migraine treatment
4- Dr. Dodick also encourages people with chronic migraine to consider a multi-modal approach to treating it. He encourages people who think they’ve tried everything, who are left to believe there is nothing out there to help them realize that 99 times out of 100 they haven’t tried everything. They haven’t tried everything in the right way or in the right combination. There really aren’t very many people that can’t be helped by taking the right kind of multidisciplinary and multimodal approach. He says sometimes we need to throw the kitchen sink at migraine. Meaning we should include looking at nutrition, supplements, exercise, mental health, physical therapy, comorbid disease, etc. If you’re part of our Facebook group, Migraine Strong, all you have to do is take a peek at our Treatment Pie to know we believe the very same thing. While we are definitely NOT doctors, we are a group of women who have migraine and share how using a combination of approaches has helped us gain control over our own migraine disease. We are so lucky to personally witness how this multi-modal approach helps people with migraine in our wellness group every day. Thank you, Dr. Dodick for confirming that sometimes, we have to throw many treatment strategies at migraine to begin to improve.
5- The same line of thinking about a multi-modal approach happened during Dr. Geppetti’s talk. One thing he said that really resonated with me was that (because there’s no cure) some people have migraine for many years and since this disease can affect us for let’s say 40 years he thinks we should try everything that is rational…not necessarily proven or well-studied but, rational. Because we have this disease for so many years we cannot stay on one single drug or with one single treatment forever. So patients should be encouraged to continue whatever is effective or rewarding for them personally. Treatment strategies like supplements and magnesium foot soaks and migraine diets do not have double blinded, peer reviewed studies proving their efficacy as treatment for migraine. But, if you try them and they work for you, continue to use them and tell others about your success. If they don’t work for you, move on and try something else. Test these strategies for yourself and continue to do what makes you feel better. If you’re part of a Facebook “support” group that scolds you for discussing treatment strategies that are not studied and peer reviewed, find another support group. Move on to people that will cheer you on for throwing any rational treatment at migraine to see what helps you. High five Dr. Geppetti! We completely agree!
6. & 7. Magnesium And Exercise As Treatments
6- I’ve seen so many comments in migraine support groups about how people don’t need magnesium or magnesium doesn’t work for them because they’re not “deficient” in it. The concern there is that most common magnesium test, Serum Magnesium, is a poor indicator of true magnesium status as the body does all it can to keep this level in the “normal” range when the person may still be chronically low. And the truth is, improving a deficiency is only one of the reasons magnesium works for migraine. My neuro-otologist believes that magnesium is naturally calming and helps calm down hyper-responsive migraine brains. It’s also a natural pain reliever. He even administers it to many of his patients after surgery because of its calming and pain relieving effects. At this year’s summit, Dr. Andreou taught me that magnesium is actually a blocker of one of the glutamate receptors. Glutamate is the molecule in the brain that drives the pain system, so magnesium blocks that excited pain pathway. In Dr. Geppetti’s talk he discussed a very similar idea. He believes that most people get the magnesium they need to live a healthy life in the food they’re eating. But, in people that are experiencing severe, repeated migraine attacks, taking magnesium is not about having a deficiency. We need extra high doses of magnesium to block the activity of glutamate in the central nervous system, to take control over this system by reducing the pain signals it sends and to help us recover from excessive pain. Light bulb moment! Now everything my own doctor said makes so much sense! Here are the two forms of magnesium I use to help control my attacks. magnesium glycinate & magnesium threonate by Pure Encapsulations.
7- I really enjoyed listening to Angel Moreno speak about the importance of exercise for migraine prevention. My biggest takeaway from his talk was that exercise helps your body manage pain yet, people with migraine exercise less than the general population. It seems the more migraine attacks a person experiences, the less they engage in movement even though research shows the more you move the fewer attacks you’ll have. Armed with this information, I think it’s important to be more intentional about engaging in gentle movement activities especially when we have chronic migraine. I’m not saying it will be easy or that you have to do it for long…just a few minutes will help you see and feel the benefits.
Another thing he mentioned is that exercise is an effective prevention method and has a protective effect on migraine. So protective, Angel says it can be as powerful as the medication topiramate, without the side effects. What a great reason to consider engaging in movement for 30 minutes, 3 times a week. It’s not only effective for migraine prevention, it’s typically very tolerable and has short and long term positive effects. For some of us it’s also really fun! I hope that sparks your motivation to get moving!
8. & 9. Explaining Alice In Wonderland Syndrome & VM terminology
8- Did you get the opportunity to watch Dr. Teixido’s talk on Understanding Balance, Vertigo and Dizziness? Oh my GOSH it was SO good! I honestly cried my eyes out watching his talk. He was so validating about what VMers go though, had such an amazing understanding of vestibular migraine and was so great at describing and expressing that knowledge. Many VMers that watched this talk had an emotional reaction as well. It was so refreshing to finally be validated and understood. Two super interesting nuggets of information that I’ve never heard before were about the symptoms of rocking and swaying and Alice in Wonderland syndrome. First he did an amazing job describing what Alice in Wonderland Syndrome is. He described it as a disorientation in space, explaining that a person who has this syndrome feels as though they have shrunk and are sitting a few inches behind where they really are in space which is EXACTLY how I felt when I experienced it. Next he discussed the feeling of rocking and swaying that is so common in those with vestibular migraine. He said there is almost no inner ear problem that can cause you to move back and forth continuously. This rocking/swaying sensation is something that should be a red flag for clinicians. Because it’s not caused by the inner ear, it signifies a problem within the brain. Nearly all of the people that experience these two symptoms have vestibular migraine. I experienced both symptoms, I wonder if you did as well.
9- Vestibular Migraine is the term used now, over Migraine Associated Vertigo (MAV) to diagnose our disease. With it comes stricter diagnosis criteria that doctors need to appropriately study vestibular migraine and the efficacy of drugs used to treat it. That strict criteria will help doctors complete better science. High five because I’ve always felt this term did not begin to describe the multitude of symptoms I experience as someone with Vestibular Migraine.
10. & 11. Motion Sensitivity, Diet and Finding the Right Doctor
10- Another thing Dr. Texiedo said is that people with vestibular migraine are super sensitive to movement and can sense unbelievably small tilts. He believes that this is the reason why we are so intolerant of motion, sometimes even the motion of our own head. I thought it was interesting that he specifically mentioned tilting as being the motion we are so amazing at detecting. Before vestibular migraine, if I was sitting at my desk working and happened to drop something on the floor I’d lean over sideways (tilting) towards the floor to pick it up. Now tilting my body that way triggers an instant spin. Instead I get out of my chair, I bend down to pick up what I dropped. I never realized that tilting specifically is overall a hard position for those with VM. In addition to tilting, for many with VM, the more we move throughout the day, the worse we feel. Sensitivity to movement is our super power and I just have to say, I’m pretty sure we got shorted in the super power department!
11- I’m about to sing from the rooftops again because I was so delighted to hear Dr. Teixido say that diet makes a difference for VMers. Dr. Teixido gives his patients a comprehensive list of foods that are known to trigger attacks in some people with migraine. He knows all of these foods aren’t going to be triggers for everyone, but believes if you’re having migraine symptoms almost every day, it will be difficult to know what your triggers are. You just won’t be able to tell. He tells his patients that the very first thing he’s looking for with this strategy is to go from nearly constant symptoms to intermittent symptoms. Following a strict elimination diet doesn’t have to be forever, it can be a 3-6 month experience to see if you feel better. Then if you do, you have a new tool in your toolbox. I think that’s a reasonable way to look at this awesome strategy that definitely helps me.
12. Find the right doctor
Lastly, it’s important to remember that doctors want to help you. They want you to feel better but, Dr. Teixido mentioned that vestibular migraine is not in their textbooks. No wonder it’s difficult for us to find physicians that know how to help us. This brings us to the advice given by Dr. Dodick where he suggests you find a headache specialist or a physician with interest in migraine medicine (or vestibular migraine) that is committed and has received the training required to help you. A doctor who is passionate about migraine will have the expertise and the knowledge to be able to attack and treat it from multiple angles. So few doctors are trained to recognize and treat chronic and vestibular migraine, we must consider moving out of our comfort range to receive quality treatment. This means we might have to travel to see a doctor that can help us. Alicia Wolf, The Dizzy Cook wrote a blog about the importance of being open to travel to get the experienced care you need to get better. The good news is. This is likely to change over the next few years as doctors are getting really interested and inspired to come into this field to help patients.
Please feel free to comment on your favorite takeaway from this year’s summit.