Less than a month ago I was met with an abundance of support from people I knew well, and people I’d just met when I asked if anyone would be willing to assist in the financial aspect of covering a VIP Pass to this year’s Migraine World Summit.
The Summit has officially come to an end, and I wanted to take the time to sit back and reflect. Reflect on what I’ve learned. Reflect on my personal theories that were confirmed or adjusted. Reflect on where to go from here. And because so many of y’all showed an incredible interest in the Summit and wished me the best in this learning opportunity, I wanted to share my reflections with you.
Being a 9 day event, I will be reflecting over the course of 4 separate posts spread out over the next week.
Day 1: Essentials
Sleep, Insomnia, and Energy
Of all the places a migraine discussion could start, it’s only appropriate that sleep comes up first. Mind you, I viewed this talk by Chirstine Lay after getting *maybe* an hour of sleep.
It’s no secret that sleep hygiene is extremely important, and that the best medicine when it comes to migraines is getting high quality, consistent sleep. There’s this idea that we heal during sleep, and it’s no secret that not getting enough sleep, having interrupted sleep, or inconsistent sleep patterns can take a serious toll.
What struck me the most from this talk was the face that most migraine patients also have some form of a sleep disorder – insomnia, sleep apnea – and that what we should be avoiding most is that urge to take a nap. I struggle with this idea a ton, because on the worst days sometimes the only way to get some relief is to lay down and sleep it off.
Another interesting factor of this talk had to do with the hours in which we are sleeping. Ideally our internal clock should align with when the sun rises and sets. Personally, I’ve always been a night owl and since moving home my sleep schedule has shifted to be more between 12 A.M. and 9 A.M. In wondering if this shifted sleep could be impacted my overall sleep health, it led me to the discovering of a sleep disorder called: Delayed Sleep Phase Syndrome. The name basically describes it well, and it leaves me with the assumption that although I need to monitor my sleep a little more carefully, perhaps my sleep being delayed isn’t making problems worse.
Primarily, this talk confirmed for me that sleep is key when it comes to migraines, now it’s just a matter of getting a grasp as to what is preventing me from falling asleep and how to improve that.
Dodging False Promises and Treatment Claims
Oh had I wished I had this presentation in my fingertips this time last year… you know when I was spending $100 here and there on various “claims” to make everything better.
This talk by Dr. Elizabeth Leroux truly confirmed all of my beliefs that I have been vocal about in terms of products advertising a cure.
My favorite takeaway from this session was the bit of history she provided when it comes to migraines and treatments. For instance, in Ancient Egypt the belief was that warding off evil spirits would cure your migraines and to do this a crocodile had to be placed a top your head… In medieval times people put cloves of garlic under their skin or branded the area of pain with a hot iron… and somewhere between bathing with essential oils and using weed, leeches were affixed as migraine simply meant we had too much blood…
Essentially, if it sounds too good to be true it is. Or it’s a placebo. It was interesting to discover that placebo type treatments have a proven history of being effective in terms of migraine treatments and the level that we expect a treatment to work along with how intrusive it is may produce a placebo effect in how effective it is.
Another key thing mentioned in this talk had to do with treatments being “natural” therefore safe. Which is incredibly false. In taking vitamins or supplements or using plants there are still large risks, and all treatments should go through your doctor.
My final thought from this talk lies within a remark about migraine surgery and I think it applies to all things. If we have initial success we report that, but what happens a few months down the road? No one is tracking that, and no one is taking the time to report if a migraine has returned – especially in the case of surgery or botox where more often than not, a patient will seek out a new doctor rather than going back to the doctor that had them go through with the treatment.
How To Get The Most From Your Doctor
This talk felt essentially useless to me, but what an important talk it is. I really pushed the importance of having various ways to track your migraines and that getting a proper diagnosis is incredibly important.
Essentially, most patients don’t build a strong relationship with their doctor which leads to questions not being asked, diagnoses not being understood, and proper treatment never being achieved. If your doctor isn’t one to take notes to leave in your appointment records, you should be taking notes during your visit.
The most important concept is that you have to be your own advocate. Most doctors aren’t equipped to treat migraine, so you need to do your own research and if you aren’t meshing well with your doctor you can fire them and find someone new.
Treating Each Phase of a Migraine Attack
This talk was an incredibly valuable one as it really broke down the different phases of a migraine attack and helped to further separate the idea of a “migraine” and a “headache” for me. A headache is more or less the actually head pain we feel. Whether it is throbbing or pulsing or my personal favorite ice pick jabbing me in the eyeball, that is a headache. Migraine however is the entire package of associated symptoms including the head pain. The migraine itself starts often before any head pain is present.
The first “phase” is the prodrome phase where many people experience symptoms such as a visual or sensual aura. This can be flashing lights or spots or even total vision loss. It can also be increasing neck tension, sensory sensitivities, verbal difficulties and nausea. This is when migraine medicine is going to be most effective in preventing the remainder of the attack.
The second “phase” is called “migraine” which is really counterproductive to understanding all the terminology. This is when the head pain is present, and is often extremely debilitating.
The third “phase” is called postdrome. In this phase, you are often fatigue, experience brain fog and other cognitive issues.
The most important thing I got out of this talk was that there are an incredible amount of gene mutations that can exist that will lead to developing migraine. Any combination of the mutations can exist, and because of the vast possibilities migraine is incredibly difficult to study. It was also mentioned that because this disease impacts primarily women, the idea of “hysteria” has pushed off large amount of research for decades.
The other key thing I learned is that an acute (abortive) treatment should work within 2 hours… which means the times I’ve counted relief after 6+ hours is totally and completely wrong.
Day 2: Understanding
How to Interpret Migraine Research
This talk really helped to explain different aspects of research and clinical trials when it comes to making decisions and understanding results. It shared that Google Scholar and PubMed are both excellent sources when it comes to doing your own research.
Important things to look out for include the sample size of a trial along with what’s called a confidence interval – which means how effective something was and at what percentage did the trial group experience that.
This talk also touched on how there’s a variety of treatments such as acupuncture or salt lamps that simply are not feasible to be tested. This doesn’t mean they aren’t viable or that they should be avoided, but it explains why actual data doesn’t exist for these treatments.
Scans and Tests
It’s no secret that not only is migraine invisible on the surface, it also doesn’t show up on tests. Which brings up the question of “do I really need ‘x’ test?”
According to Dr. Dimos Dimitrios that answer is no if your diagnosis is “migraine” and that tests are really only necessary to rule out extremely rare cases *insert Arnold Schwarzenegger saying ITS NOT A TUMOR*… but, for many of us migraine patients having that peace of mind really helps.
In his eyes, a new headache, a change in headache, or a prolonged aura are reasons to get a scan done, but primarily to exclude other brain disorders, not to confirm a migraine diagnosis.
The best piece of advice from this talk lies in when you should trust your doctor regarding the need for testing. Pay attention to how long and in depth of an exam your doctor performs. If it isn’t as in depth as you may like and you’re sent off to simply get tests and a prescription, odds are good that the test isn’t necessary and you should seek a second opinion.
Tension Type Headaches vs Migraine
This talk to me was really valuable. If I look on my diagnosis section of my medical history there is both “tension headache” and “migraine” which is really frustrating. It’s the idea of which is which, and the first point of clarification came… essentially we can describe tension type headache as a simple headache with moderate pain.
Most people – like me who have both diagnoses – will start out experiencing a tension type headache and it evolves into a migraine. This is important to understand as I typically don’t attempt to treat my tension type headaches, and I should. Tension type headaches don’t have “stress” as a trigger, which further confirms my understanding that stress management and practicing mindfulness are wonderful, but they truly have no impact on my head pain.
When it comes to treating tension headaches, the best advice was to avoid medications as the same migraine medications are an option, but they work on a spectrum and aren’t as effective. Biofeedback, food avoidance, and exercise were suggested to be more preventative options.
Exercise was really pushed in this talk, which is difficult to grasp as a chronic migraine patient who knows that exercise is obsolete and only makes things worse once my pain gets over a 7… and for reference I’ve had 10.5 cumulative days over the course of March where my pain is under 7… so that’s not really an effective preventative measure.
I think the strongest thing that came out of this talk was the idea that having tension type headache along with chronic migraine is what poses problems for Medication Overuse Headache. It’s the explanation as to why even when my painful migraine has passed, the head pain never really goes away.
Clinical Errors That Undermine Care
I found this talk to be incredible. It truly echoed the concerns I have when it comes to getting the best care and how I wish we’d get more than those 15 standard minutes with our doctors. I mean, typically you follow up every 3 months… so that adds up to an hour of care each year and as our migraines change and evolve, we have questions and concerns and life changes that demand more than an hour of time with the doctor who’s care plan is guiding our life. Which explains why so many of us have to totally take over our own care and make informed decisions on our own.
Dr. Katsarava pushed the idea that not only has the standardization of medicine caused doctors to lose their empathy but also doctors don’t typically see migraine as life threatening therefore treatment isn’t taken as seriously.
Based on a study by Reuters, roughly 9-10% of migraine sufferers (including those that aren’t severe or chronic) attempt to take their life… so even though migraine can’t kill you, the mental and physical toll cannot be ignored.
On the non-doctor related side, research based in Europe shows that only 10% of migraine patients actually seek care. The stigmas and the idea that women are supposed to have “headaches” leads to people never seeking help. Going further, only 2% of patients who qualify for a preventative medication are on one.
Overall, the issue lies within general education of the population as a whole. We aren’t talking about migraine, even though it is the 2nd most disabling condition in the world. Doctors aren’t getting enough education. There aren’t nearly enough specialists to treat patients adequately. And as a patient, seeking out useful information is incredibly difficult if you don’t know how to manipulate search engines you’re stuck with useless sites like Web MD.
Day 1 & 2 Reflections
Overall, the first two days made me really question why I was investing my time and people’s money in this Summit.
A lot of the information wasn’t new to me and it felt as if the speakers weren’t actually talking to me a chronic migraine patient. The advice revolved around ensuring that you are on a preventative medication and that you really just need to be getting better sleep and exercising.
The first two days were really the introduction to the information I wanted. I did learn some fun facts and got a deeper understanding as to how much the general public doesn’t know and how this filters into our medical care.
My most important takeaways from the first two days are that I need to spend a little more time focusing on my sleep habits and ensuring I’m doing what is necessary to optimize my sleep and gave me a new potential idea to look into – low pressure headaches.
Day 3 & 4 focuses on migraine types, triggers and symptoms.
Day 5 & 6 focuses on migraine treatments.
Day 7 & 8 focuses on difficult migraine cases and living with migraine.
These days will be touched on in Part 2, 3, and 4 of this blog series.
The Summit is still available for purchase if you’re interested in owning copies of the videos/transcripts. My reflections only touch on a small portion of what was covered in each talk. Click here to purchase – there’s a 30 day money back guarantee if you’re not satisfied with the content.