The Migraine World Summit Summary: Day 4

Day 4

Teri Robert: They don’t get it: Educating family and friends on migraine

Education & advocacy is just as important as medical treatment.

If you are uneducated about migraine then they can be extremely frightening especially something like hemiplegic migraine which often has stroke like symptoms.

Read up about migraine (medical journals etc) important to note the date the article was published and who it was written by. Something written 20 years ago might be out of date now.

World Health Organisation (WHO): undergrad medical students have 4 hours education on all headache disorders.

“Migraine impacts every aspect of life”

Talk to psych- coping skills and couples therapy can be really useful

Don’t use phrase migraine headache. Better to use the term migraine attack. It is a disease!

One of the big internal challenges with migraine = guilt.

Migraine will steal; confidence, self-esteem and friends… IF WE LET IT!

Lots of support groups online now (social media big presence of the migraine community). Stigma and discrimination within the migraine community itself.

Knowledge is the best prescription!

“I have migraine – migraine doesn’t have me”

It is so highly unlikely you have already tried EVERYTHING. Trying new preventative migraine treatments every 3 months would take in excess of 25 years. Hope with new CGRP treatments.

Practical tips

1.Control your own environment

2. Be proactive in recovery

3. Authentic and honest about WHY you can’t do something. Don’t hide- stigma survives.

4. Dopamine levels drop during a migraine attack – makes us feel like isolating ourselves from people.

5. Don’t feel guilty. It’s not your fault and you aren’t able to control it.

6. Coping skills – see a psych (no embarrassment)

7. Practical tips – prepare food in advance for your family, “migraine box” of activities for children for example for when you have an attack.

8. Comfort measures- aromatherapy / anything that helps you to relax. Migraine attack pack (meds, heat/ice)

Migraine is a life sentence NOT a death sentence!

Educate your employer – this is a neurological disease NOT a headache.

Important to sometimes let go of relationships that aren’t good for us “byeeeee”