The Migraine World Summit Summary: Day 7

Day 7

Lars Edvinsson: Treatment spotlight: Anti CGRP treatments for migraine

How does CGRP work in the trigeminal system?

1990- CGRP discovered – only single molecule released during a migraine attack. (Himself and Prof Goadsby).

Monoclonal antibodies – way to produce something to block the CGRP.

1.Go to receptor and block receptor itself

2. Pacman style inactivates CGRP

CGRP – stored in the trigeminal ganglion – activated and then released into the head.

The monoclonal antibodies DON’T affect the release of CGRP. They either;

1.Block the receptor

2. Mop it up

Currently pending approval FDA & NICE.

*First CGRP antibody has actually been FDA approved since the summit (May 2018)

Clinical trials

CGRP antibody or CGRP antibody receptor

-        Fairly similar in effect

-        Side effects similar to placebo

-        Important to note that this is NOT a cure.

There have been some “super responders” – complete remission as a result of CGRP

treatment. These are a sub population but it is possible!

What can average patient expect?

-        No side effects

-        Cost is an issue (currently very expensive)

-        Blessing for those it does work for

-        Hard to predict who will have a really good outcome from it (very early stages)

Safe & effective is main priority at this stage.

Molecule for acute treatment coming soon too – hiccup along the way with that though (something bothered the liver).

Hopefully we will end up with; CGRP receptor blocker acute g-pant

Triptans block the release of CGRP so the combination of the two could work well together. CGRP won’t have the same side effect of triptans though.

Who is a good candidate for CGRP?

-        No particular group

-        No long-term results yet so hard to say

-        Pregnant woman/ children? Biology of CGRP means it should in theory be fine but need to learn more

*Interesting to note during the 2^nd & 3^rd trimester migraine disappears (level of CGRP elevated). Desensitizing CGRP. Then migraines back when they have the baby and CGRP normal.

Big pharmaceuticals have CGRP in the pipeline.

G-pants – oral – acute – separate class of drug

Antibodies – injection once a month – preventative- injection patients take themselves (subcutaneous injection)

CGRP receptor and CGRP receptor antibodies;

-        Phase 3 trials at last stage

-        Phase 4, further studies ongoing

Day 7

Richard Lipton: Treatment spotlight, Triptans & Rebound headaches

Medication overuse headache (MOH)- Secondary headache disorder like brain tumour etc.

Rebound headache/MOH basically the same thing.

Medications used to treat headache – when used too much can cause MOH headache disorder.

MO: More meds (opioids and narcotics etc)- worse head gets over time.

                                                              

MOH: Not meant to be judgmental. Just another factor causing headaches. Not addiction! Can be very difficult if in pattern of MOH.

How common?

-        MO: 1-2% of general population

-        About as common as epilepsy

Do I have it?

-        History/pattern (infrequent to frequent headaches)

-        Codeine for example (end of dosing interval headaches, pain comes back just before next dose)

-        Headache itself not being treated

-        Use of caffeine containing products

-        Profile: accelerating headache (more meds they take, over time, the worse the headache becomes.

-    Worse in morning and sometimes weekends (people have slept through usual dose of morning medication)

What medications are involved?

-        Triptans although hard to get hold of enough in a month

-        Occasionally with anti-inflammatories (less likely)

-        Opioids/barbiturates most troublesome

Acute medication should be taken 2-3 days MAX per week

Help – I take 5 days a week – what can I do?

-        Avoid triggers

-        Find a preventative that works

-        Take acute medication early but don’t take too much (really tricky in practice to do this) – much easier to achieve if you can reduce overall headache frequency with a preventative.

*Issue of people desperately trying to avoid MOH – end up delaying acute meds and then

take them too late and they don’t work.

Preventative meds – generally don’t cause MOH (sometimes a worsening when people come off

these drugs for a brief period).

What if I have more than one pain condition?

-        Research shows that pain disorders travel together

-        People who have pain in multiple bodily areas are more likely to suffer from headache and these people are more likely to have episodic migraine that turns to chronic

-        Preventatives

-        Physio

-        CBT

-        Tens machine

-        Antidepressants

-        Restrict acute number of days taking meds

-        Neuromodulation (2 FDA approved) can be good option for people with MOH to use on a daily basis but also for acute attacks instead of pain medication.

The Migraine World Summit Summary: Day 6

Day 6

Robert Cowan: Best natural, affordable and free treatments

One of the biggest problems with western medicine is the time pressure for consultations.

Behavioural & lifestyle changes are so important. Patients who follow this do the best.

Sleep – getting up at the same time each day even at the weekends (no lie ins!)

Diet – stress of diet can make headaches worse. Schedule for food and meal times and be consistent (let brain know when food is coming).

Exercise – Helps to raise endorphins so pain of 8 feels more like a 5.

These three components work best together;

1.Preventative meds

2. Acute meds

3. Anti-migraine lifestyle

There is no mention of lifestyle changes in the current guideline treatments for migraine. Why? Western medicine – quick fix.

Partnership between patient and doctor is key. You can’t just take a pill and expect to feel better. Work with each other.

He acknowledges it is VERY HARD for patients with chronic migraine!

Have a vision of wat you would like life to be about. See it and visualise it.

Tendency to overdo it on good days – enjoy good days but take it easy and don’t overdo it otherwise one step forward, two steps back. Progress NOT Perfection!

Important to make informed decisions on what you’re able to do or not do – what will be worth it?

Natural treatments – Roberts thoughts

1. Acupuncture: Culturally bound. Amazing results for some. Make sure you go to someone with training in traditional Chinese medicine.

2. Biofeedback: Big fan! Good evidence for it. Uses a technique to get feedback about all sorts of things we are not conscious of. Learn to relax and calm down the nervous system.

3. Mindfulness training: Live in the present. Don’t worry about the future or what has been. Good, well controlled studies of efficacy for migraine. Meditation – clearing mind. Mindfulness – focussing on the now.

4. Daith piercing: sceptical. Probably works as a placebo. No hard science.

5. FL-41 tinted lenses: Certain wavelengths of light can be more painful for some people. Study found can actually make worse when glasses worn all the time. Can become more light sensitive all the time. Can be very soothing to wear at times.

6. Food allergy and sensitivity test: weak data and no clear triggers. More important the time and frequency you eat. Probably not worth your time, pain and money. Cutting out gluten – FAD.

7. Ketogenic diet: worse than a migraine itself HA! Mixed data for it. Originated by treating epilepsy. Wouldn’t recommend.

8. 5:2 diet: No evidence for migraine. Migraineurs don’t do well with disruption to routine.

9. Vegan diet: If healthy and feel better then great. Epiphenomenon – more energy etc but not migraine specific.

Find a diet you are comfortable with and be consistent!

Migraine: Either too sensitive to external stimuli or internal stimuli (e.g. hormones).

Supplements?

1. Ginger, turmeric and saffron (potent anti-inflammatory) not many great western medicine studies.

2. Ice packs for acute attacks? YES. Ice was the first anaesthetic used.

3. Hydration- HUGELY IMPORTANT

4. Epsom salt baths – anecdotal studies

5. Magnesium, riboflavin, coq10 and calcium (good data for migraine)

6. Probiotics – good for health. No data for migraine.

Neck tension & Migraine

1. Chiropractors: in clinic they see the worst outcomes of chiropractic care (paraplegic). Very wary!

2. Physical therapists & osteopaths

The Migraine World Summit Summary: Day 5

Day 5

Gretchen Tietjen: Body pain, Allodynia & Fibromyalgia

Migraine & Body – Body aches & hair hurts

Allodynia

- Pain without painful stimulus

- “Central sensitization”

- Examples include; combing hair, putting on glasses or earrings and pain whilst washing hair (sensitivity to heat or cold)

- Light touch can be extremely painful

- 80% will say they have experienced this with a migraine

Chronic migraine – can experience allodynia outside of an attack as well

Migraine comorbid conditions

1. Endometriosis (nerves to areas of endometriosis growths)

2. IBS

3. Interstitial cystitis

4. Chronic fatigue syndrome

5. Fibromyalgia (not problems with muscle itself – problem with nerves to muscles)

Central sensitization – trigeminal nerves (sinus, face & head) – explains why some people think they are experiencing sinusitis.

Allodynia sufferers

-        More likely to smoke

-        Higher BMI

-        More than one pain condition

Migraine and body pain- is it fibro?

-        Trigger points on the body; back of shoulders, spine, hips, elbows, legs. Sensitive on specific body points.

What can help?

1. Physical therapy

2. Exercise

3. Water therapy

4. CBT

5. Tai Chi

6. Mindfulness

7. Yoga.

8. Physio/ Psychologists

Medications

1. Fibro – duloxetine, pregabalin, Cymbalta (Approved by FDA)

2. SSRI (am) + Tricyclic antidepressant (amitriptyline) (pm) – combination of two can work well together. Anti-depressants can work well for migraine too.

3. Antivirals possibly for fibromyalgia

If you are able to stop the pain in your body – Allodynia usually calms down as well.

Communication between different doctors is very important. Brief your new doctor. Tell neuro what is happening with gynae for example. Accessing your notes from different areas can be difficult.

Neuro can make referrals to other specialists where required for example to a physio or rheumatologist.

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”

The Migraine World Summit Summary: Day 3

Day 3

Lawrence Newman: Daily, unresponsive refractory headache

Types of chronic headache

1.     Chronic tension

2.     Chronic migraine

3.     New daily persistent headache

4.     15+ headache days a month

MOH (medication overuse headache) – adding fuel to the fire. Short term gain- long term making headaches and situation worse.

Misdiagnosis sometimes between chronic migraine and new daily persistent headache.

Primary headache disorder – headache itself is the problem

Secondary headache disorder- MOH, stroke, brain tumour etc

Important in diagnosis (frequency, location of headache and what does it actually feel like)

51 million people have daily refractory headache!

New daily persistent headache

1.     Migraine and tension headache features

2.     Different from type of headache they have ever experienced before

3.     No headache history and within 3 days onset

4.     Often comes on following; a virus, head trauma, stress or a surgical procedure

Treatment options?

1.     Anti-migraine drugs and tension headache drugs

2.     If it was after an infection – anti viral, anti-inflammatory and anti-asthma drugs

3.     Double jointed people (injections can interrupt the pain)

4.     Neuromodulation devices- both invasive and non-invasive can be used

Inpatient stay can sometimes be useful to help ramp down the cycle of pain. Nerve blocks are often administered along with stress management and biofeedback.

Chronic pain & depression sadly go hand in hand.

New daily persistent headache tends to be more medically resistant at the moment BUT

“There is hope and NO reason to give up!”

Important lifestyle factors

*SEEDS*

1.     Sleep: 8 hours a night

2.     Eating: Don’t skip meals

3.     Exercise: 3 days a week for 30 mins

4.     Drinking: 5 glasses of water +

5.     Stress reduction: exercise (can tick of two at the same time)

Day 3

Andrew Charles: 6 medications that can make migraine worse.

Andrew is part of the Goldberg migraine programme. Talks about non-migraine drugs that many of us take causing problems.

Not evidence based (needs more research), largely observation from in the clinic.

1.     SSRI – Anti-depressants (Prozac)

-        Observation in clinical practice

-        Exacerbating migraine

-        SNRI could be a good alternative to use instead

-        Depression and migraine (comorbidity) mood issues associated with people with migraine

2.     PPI – Proton pump inhibitors (gastro acid reflux)

-        Taiwan study (start on a PPI and saw an increase in headaches)

-        What is your biggest problem? Is the benefit of this medication worth the possible exacerbation of your migraines?

-        Look for alternative if you really think you need to be on something for this.

-        Possible rebound reaction when you first stop taking this drug

3.     Nasal steroids/decongestants

-        Claritin D & Pseudoephedrine

-        Look for something without a decongestant in them

-        Long term use of these steroids – exacerbates migraine

-        Good alternatives – anti histamines

4.     Oral contraceptives

-        Hypothalamus drives hormonal system (every hour hormone released in the brain)

-        Oestrogen falls – migraine attack

-        Having more oestrogen doesn’t seem to be good for migraine either

-        Low dose continuous can be helpful or coming off it completely

5.     Hormone replacement therapy

-        Oestrogen patches

-        Long term- not good for migraine

6.     Pain medication

-        Not frequent use

-        MOH

-        Pain meds making migraine worse

-  -        Study showed that those who were given anaesthetic pain meds wanted more pain meds         after than those who were given a saline solution

-        Need to be very careful with opioids- codeine

-        Caffeine containing analgesics can be worse for those with migraine for example, Excedrin

-        Important to communicate to neuro what you are taking

Coordinating pain from different doctors – patient has the ability to educate their physician and      increase awareness for primary care doctors and with OBGYN for example.