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. We all want to know what to do for migraine headaches. What is the latest? What might we have missed? What’s next for us so we can get better?
As I sit here at my desk writing this, I am truly struggling. We are in the middle of a pandemic. Like you, all my plans and intentions have been upended. A few weeks ago, when this virus seemed like the problem of distant lands, my intention was to watch the entire MWS and write about my takeaways so you could learn more and assemble a list of things to consider asking your doctor.
I was planning on a wonderful summary like the one Jennifer Bragdon wrote about the 2019 MWS. Unfortunately, I have been terribly distracted by what all this uncertainty means for our present and future. Like you, I am trying to adjust to the good and bad of having everyone home all day. My daughter is now trying to complete 5th grade about 15 yards from where I am sitting. There is uncertainty about our income and nothing is predictable or routine.
This year’s Summit is truly fantastic and perfect diversion from our reality. The timing has been unfortunate and you may have not had a chance to watch it. So, I highly encourage you to consider buying it so you can watch the experts at your convenience. I promise there is a plethora of information in there that will help you understand more about migraine and how to help get yourself better.
In light of the current state of the world and my household, I am bringing to you a summary of two topics from the first half of the Summit.
1. 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 that 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.
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 Summit, I think these medications must be underused.
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 given orally. If nausea and vomiting are a factor, the 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 preventive routine was key to helping her know what to do about migraine headaches.
2. Hormonal Migraine Seasons in a Woman’s Life
This is a must-see! It was the first interview I watched as hormones and menstruation can be a problem for so many women with migraine. Wendy Bohmfalk (MWS) interviewed 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.
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 suffer more often. 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 neuromodulation device so no medication is used. This may be a helpful substitute and is also considered relatively safe during pregnancy
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.
Our own Marina Lentini was one of the unlucky women whose attacks escalated during pregnancy. She shares part of her story here.
The diagnosis of 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 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 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 some people are 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 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 individualized plan. She is passionate about helping her patients know what to do for migraine headaches. This was an interview worth seeing. You will soon see blogs here about hormones and migraine and we will definitely refer to this interview, Dr. Ailani’s published research as well as other resources.
The Migraine World Summit 2020
If there is ever a year to buy the Summit, this is it. There were so many excellent interviews that were both inspiring and packed with useful info to help us all know how to help manage migraine.
Please note that none of the information or views expressed above is a substitute for doing your own research including consulting with your doctor.