Wednesday 15 April 2020

The Migraine World Summit :Day 1

I hope you find these summary notes from this years Migraine World Summit useful. There are not notes on every talk but a good selection from each day. If you would like to go back and watch any of the talks from this summit you can get the all access pass here

*This post is not sponsored by the Migraine World Summit but I am a participant in the Migraine World Summit affiliate program. This means I earn a commission from any qualifying purchases of the summit made through my link.

Alicia Torborg is the Executive director for the Association of Migraine disorders.
Jon Summer is a board member for the American Migraine foundation.
Shirley Kessel is the Executive director for Miles for Migraine

Attacks are so varied even for the individual. Some start behind the eye whereas some might start at the back of the head. Jon discussed how stress was likely to have triggered off his chronic migraine. The less you fight it- it gets better.

Stress the difference between seeing a neurologist and a headache specialist.

How do you manage your attacks and what meds do you take?

Alicia: Exercise is helpful for her (walking). She takes over the counter meds for attacks (Excedrin migraine) and tries to stay hydrated. For prevention she is on an anti CGRP, Botox and an antidepressant.

Jon: He doesn’t take much for acute attacks as nothing much works but he will take over the counter meds (Tylenol and 800mg ibuprofen). Get out of bed as quickly as you can after an attack. As soon as you feel able get up and get going again. Appreciates he is very lucky that he is able to exercise. For prevention he is currently taking a break from preventative pharmaceutical drugs. He finds mindfulness and paying the guitar have been really helpful for him and he has also been drinking celery juice.

Shirley: Exercise is key and the best preventative she has tried (walking). She sticks to a routine “lives life like a baby”. Get up at the same time, eat at the same time, go to bed at the same time etc. For prevention she is on an anti CGRP, Botox and an antidepressant. She also does exercise, yoga and meditation for migraine prevention.

Living life VS Managing your health?

Alicia: Say YES to everything when feeling good.

Jon: It took a few years for family and friends to understand but he mostly says yes now too.

Shirley: Live like a baby and stick to a schedule. Says no to lots of things.

Migraine causes anxiety & depression. They seem to come hand in hand with chronic migraine unfortunately.

Experience of migraine in the workplace?

Alicia: For years in the corporate world she hid her migraine and was too afraid to tell anyone. Her husband had to bring her in a couch for her office so she could lie down in the dark when she got attacks. She changed roles and is now able to work from home as an executive director for a migraine non-profit.

Jon: Had to stop working due to migraine (“too much, too fast”). He stressed the importance of opening up to your employer and explaining to them what migraine is and how it impacts you.

Shirley: She is able to work from home which helps.

Family & Migraine?

All three of them have children with migraine. Try not to let migraine be the focal point. Difficulties with other family members not understanding the extent of migraine especially when its chronic. Fears for children who are episodic that it might progress to chronic migraine.

Biggest success and failure in managing migraine?

Alicia: Success - her career. Failure - the side effects of meds

Jon: Success – Finding likeminded people who understand. It’s important to be able to poke fun at migraine and the challenges it brings.

Shirley: Success – her biggest success is hope and having a positive outlook. The belief that tomorrow will be better. Failure – totally giving in and letting her mind go down the rabbit hole and catastrophising.

Don’t fight it. Find new hobbies and adventures. You’re the boss!

Cluster headache is often referred to as “suicide headaches”.

They are a cluster of specific attacks. Typically, the attacks last between 45 mins to 3 hours and you might have a few of these attacks per day. The attacks come in cluster cycles which could be 6 weeks or 3 months long for example. Typically, you will only be symptomatic during a cycle.

What are the non-headache symptoms?

-        One sided
-        Eye droops
-        Eye tears
-        Sinus drain
-        Start behind eye/temple
-        Can move down into the jaw area.

You can have cluster headache AND migraine but people who have both can usually easily distinguish between the two.

*Attacks last the same time. This blew my mind! So, if someone has a cluster attack that lasts for 57 mins… all of their attacks will last for 57 mins.


Diagnosis can be very difficult. Often misdiagnosed with migraine and patients frequently see between 6 -8 different doctors before being diagnosed with cluster headache.

Very hard to diagnose because of the nature of the cycles. A doctor might prescribe a medication for a sinus infection for example. Patient takes this medication and symptoms improve only because the cycle then ends. Because the symptoms stop and start depending on cycles often the wrong medication and diagnosis is given as the patient seemingly seems to improve.

40% misdiagnosed thinking it’s a dental issue and often go on to have dental work and procedures when it’s actually cluster headache.

Cluster headache profile?

8:1 male to female was the ratio that was used for years. Now believe it’s probably somewhere closer to 2-3:1. For years women were misdiagnosed and told they didn’t have cluster and it was migraine.

Age – typically starts mid to late twenties. Paediatric cases of cluster in patients as young as 4 years old. Incredibly difficult to diagnose. Some people grow out of it with age but sadly lots of people don’t. Cases of patients in their nighties in care homes still suffering with cluster attacks.

Usually with a cluster attack, when it’s over its completely done. There isn’t usually lingering pain like that is seen in some migraine patients or other headache disorders.

Episodic VS Chronic

Episodic cluster: 80% of cluster patients. Tend to have 1-2 short cycles a year (spring and autumn season cycles for example) lasting for around 6 weeks or so.

Chronic cluster: no cycles. Experience cluster attacks 12 months of the year. Usually once chronic, people stay in chronic cluster.

Treatment options?

-       New anti CGRP drug Emgality has been approved for cluster headaches.

-      Oxygen therapy. Been used for years and can be extremely effective for many. High flow oxygen. No side effects. Unfortunately, there are many access issues.

-        Devices – ElectroCore/gammaCore

What are the key advocacy issues?

-       Oxygen through Medicare.
-     Educating medical professionals about what cluster headache is and how to spot it in order to correctly diagnose.

-      Educate the migraine community to avoid further misdiagnosis between the two headache disorders.

Clusterbusters have trained suicide helpline operators to help with how they should be handing calls from those who have cluster headaches. For example, saying something like “oh my mum gets migraines, so I know exactly how you feel” could be the worst thing you could say to someone struggling with cluster attacks.

Things will get better. There is more research being done and more treatment options available for cluster headache than ever before. Keep making it one more day.

No comments

Post a Comment