It’s that time again! We are Migraine World Summit enthusiasts and can’t wait for them to confirm the dates. We expect the dates to be in the middle of March and will update this when it’s officially announced.
It’s a simple and powerful mission statement: To reduce the global burden of migraine. Since 2016, the Migraine World Summit (MWS or Summit) has brought together dozens of leading migraine experts, doctors and specialists from around the world. They are interviewed to help answer the most difficult questions for those with migraine in desperate need of relief. Best of all, there is no charge for this tremendous event. Register now so you can put it in your calendar and get the relevant links and reminders.
We all want to know what more can be done for lasting relief. What is the latest treatment? What might we have missed? What’s next for us so we can get better? How can I get off of some of these medications and feel like myself again?
Migraine World Summit 2021 promises to be every bit as good as the earlier 5 Summits. While the entire program is free, there are valuable and practical perks to choosing one of the packages. Personally, I do not have the time or ability to watch all the videos on the days they are available. Most of us cannot spend hours each day watching a screen. Buying the program allows me to watch the sessions on my own schedule. The resources, guides and transcripts come in handy, too. I still refer to one or 2 expert interviews from 2016 Summit.
Below, I summarized two of my favorite expert interviews from last year’s Migraine World Summit 2020. The information presented was incredibly valuable. This should give you an idea of the quality of information presented.
Migraine World Summit Presentation – Status Migraine: When Pain Doesn’t Stop
This was my favorite interview of the first half of the MWS. Carl Cincinnato (MWS) interviewed Christina Treppendahl, Family Nurse Practitioner, founder and director of The Headache Center in Mississippi. Christina delivered so much info in a peppy and relatable way. I want to meet her! Her talk was about far more than status migraine.
She has a true passion for the work she does and had so much information for those debilitated by status migraine. Simply put, status migraine is diagnosed migraine that lasts longer than 3 days. Some people are prone to flares that can last days or weeks. And, for some, migraine lasts longer. Status migraine is sometimes referred to as refractory migraine and intractable migraine.
Christina explained how the pathophysiology of status migraine is different. With status migraine, the neurons and meninges send signals deep within your brain to “auto play more pain and more pain and more pain.” This is central sensitization. And, it’s not just pain. It’s light sensitivity and nausea and whatever else the person usually experiences with their regular migraine attacks. The brain’s “migraine switch” seems to be stuck in the “on” position.
Breaking Status Migraine
Everyone who has had intractable migraine or is afraid that they may have a problem with it in the future wants to know what to do for migraine headaches that seem never-ending. You need a “what-if” plan and a back-up plan and this Migraine World Summit expert helps outline a plan.
Christina shared with us her go-to strategy for shutting down the prolonged attack when someone is at her center. She has a three-pronged approach: First, she uses IV prochlorperazine (Compazine). She says, “It’s the winner, hands down, against all other medications studied for status migraine.” A study was done that shows how effective Compazine is when compared to Dilaudid, which used to be commonly given to break status migraine.
Compazine is considered a medication for nausea and vomiting. Based on how often I heard anti-nausea medications recommended for stubborn migraine during the Migraine World Summit, I think these medications must be underused.
If you haven’t tried an anti-nausea medication yet, but this on your list of topics to discuss with your doctor.
In addition to IV Compazine, Christina’s plan of attack against status migraine includes an NSAID like naproxen (Aleve) and a triptan or DHE given IV, intramuscularly or intranasally.
For at-home plans to break status migraine, Christina also suggests a 3-drug combination similar to the in-office plan but given orally- Anti-nausea medication, an NSAID and a triptan of DHE. And, oral hydration, of course. If nausea and vomiting are a factor, Compazine can be given via a rectal suppository.
There are options to pursue if the above approach does not work. Steroid tapers are often effective as are out-patient IV infusions of “migraine cocktails.” Nerve blocks can also be effective. Other options were discussed and should be considered before in-patient stays.
Opioids and Status Migraine
According to Christina, opioids make the problem worse. Anyone taking opioids or barbiturates for migraine is at a much higher risk for status migraine.
Prevention of Status Migraine
Make sure you are on the right preventive routine. Christina believes if preventives were properly used earlier, status migraine would be prevented in most people. She believes that general neurologists know what to do for migraine headaches when they are infrequent, but they often lack the training to know how to help more challenging cases.
Having a plan for what to do when an attack is still in full-swing and approaching the 72-hour mark is very important to prevent your “pain switch” from getting stuck in the on position.
Our own Eileen Zollinger struggled with status migraine for 18 years and was finally able to break the vicious cycle. An outstanding headache specialist and change in her diet and preventive routine was key to helping her know what to do about migraine headaches.
For those who are prone to status migraine, the cost of the Migraine World Summit is easily justified by this one session. You would have a lot to discuss with your doctor to tweak or overhaul your plan to get better.
Hormonal Migraine Seasons in a Woman’s Life
This is a must-see! Hormones and menstruation can be a problem for so many women with migraine. Wendy Bohmfalk, Migraine World Summit interviewer, discussed this topic with Dr. Jessica Ailani, Director of the MedStar Georgetown Headache Center and specialist in headache and women’s health.
There were so many takeaways, but the biggest is that fluctuating estrogen is the likely culprit for those of us who have hormonal migraine. Our migraine brains tend to do best with steadiness so fluctuating anything can be triggering for us. Even thought the hormonal fluctuations are normal, we can still take actions to thwart terrible attacks.
There was a good discussion about puberty as that tends to be the time when migraine becomes more of a problem for girls due to fluctuating estrogen. Contrarily, puberty brings relief for many boys.
According to Dr. Ailani, testosterone possibly has an anti-pain effect as well as an anti-inflammatory role. Testosterone is likely protective and may explain why boys tend to have reduced migraine attacks after puberty.
The first line of treatment recommended was lifestyle with a strong focus on consistent, quality sleep. Hydration and eating healthy foods were also emphasized. Understanding that teens often struggle with these priorities and migraine attacks may happen anyway, she acknowledged the need to treat but did not elaborate.
One of the joys of pregnancy is that many women with frequent migraine will have some relief. Unfortunately, 30-40% of women are not so lucky and will continue to have attacks and may experience an uptick. Those who do get better often experience relief during their second and third trimester.
Despite what some doctors say, there are acceptable medical interventions for pregnant women. Dr. Ailani, discussed lifestyle changes that will help reduce the frequency of attacks as well as helpful ideas for what to do when having an attack. In addition to the usual recommendations to lie down in a dark room with an ice pack, she suggests trying some aromatherapy with lavender oil, peppermint oil or Vicks. To treat attacks, she considers acetaminophen and metoclopramide acceptable. Metoclopramide is a commonly prescribed anti-nausea medication that is frequently used for migraine. It is considered relatively safe during pregnancy. Dr. Ailaini says “relatively because nothing is completely safe during pregnancy.”
The Cefaly device is a neuromodulation device so no medication is used. This may be a helpful substitute and is also considered relatively safe during pregnancy. It is now available without a prescription.
During the second trimester, she says it’s safe to use some daily preventive treatments but did not share which ones she uses. She offers lidocaine-only nerve blocks with good results for some of her patients. All treatments that she recommends consider the comfort level of the patient as well as making sure the gynecologist is supportive.
During breastfeeding the choices change as the medications are not being filtered through the placenta anymore, but breast milk can carry some medications that may be harmful to the baby. During breast feeding, many doctors typically allow one specific triptan (eletriptan or the brand name Relpax) as well as use of some NSAIDs.
Marina Lentini was one of the unlucky women whose attacks escalated during pregnancy. She shares part of her story here.
Menstrual Migraine as per the Migraine World Summit 2020
The diagnosis of true menstrual migraine has to do strictly with the timing of migraine attacks. Women can have both menstrual migraine and regular migraine. These attacks tend to occur when hormones are fluctuating. They can occur 3 days before the start of the menstrual cycle to 3 days after the start.
Some women only have migraine attacks during this time of the month while others have menstrual-related migraine in addition to migraine that is triggered by other influences besides hormones. Menstrual migraine tends to be more resistant to treatment, last longer and are more disabling.
Dr. Ailani emphasizes the importance of tracking all menstrual/hormonal symptoms like breast tenderness and bloating to help in doing the detective work of when and how to treat. Chasing lab values of hormones is not helpful, according to this specialist. She also thinks it’s very important to find a doctor that is knowledgeable about knowing how to help navigate this tricky and resistant type of migraine.
In terms of how to help with migraine headaches and all the other symptom that go along with migraine attacks, Dr. Ailani discussed a few approaches. She believes triptans are the gold standard for menstrual migraine treatment. She described “mini-prevention” using one of two types of triptans. The specific triptan is taken for several days in a row to see if the attack can be prevented or lessened in intensity. While she did not mention specific names, my assumption is that she was referring to the 2 longer-acting triptans, Frovatriptan and Naratriptan.
For the people who complain of fatigue after taking triptans, sometimes she suggests taking naproxen for the period of time around menses as a “mini-preventive.” For others, she may have a plan where they take naproxen in the morning so they don’t have to function through the side effects of the triptan during the day, and then they take the triptan at night.
Another interesting approach discussed for managing menstrual migraine was using prescribed hormones. This can help prevent attacks by keeping hormone levels more constant. And, in some cases, the goal of the prescribed hormones was to eliminate monthly menstrual cycles. Hormone therapy and birth control pills as well as IUDs can be safe for some people but risky for others. This was discussed in some detail and was very interesting.
Perimenopause and Menopause
It was once thought that menopause was the fix for migraine. It seems that about 60% of women see an improvement with menopause. For some, they only get them occasionally whereas others see improvements in the intensity of attacks.
Just like with menstrual migraine, Dr. Ailani works with her patients to find relief. Depending on her patient’s medical history, prescribed hormone therapy may or may not be appropriate.
It was refreshing to hear Dr. Ailani being so positive about the options for all kinds of hormonal migraine. She clearly works closely with her patients to develop an individualized plan. She is passionate about helping her patients know what to do for migraine headaches. This was an interview worth seeing.
We included this discussion well as discussions from previous Migraine World Summit episodes when writing this thorough article and migraine and menopause.
The Migraine World Summit 2021
The 2021 Summit promises to be packed with information and resources that will help you feel better. Half of managing migraine is education and this is the best, consolidated way of learning how to get yourself better whether you have an excellent neurologist or not. make sure you sign up.
Please note that the information or views expressed above are not a substitute for doing your own research including consulting with your doctor. Do not alter your migraine care without consulting your doctor.