Migraine Summit Notes - lots of great advice

Hi All

(Sorry if this is too long a post, but packed full of great info).

I wrote lots of notes during the summit and have typed them up below and put into bullets/sentences to make easier to read.

***** FOR MORE INFORMATION ABOUT THE MIGRAINE WORLD SUMMIT: bit.ly/HealthUnlocked-Summit *****

There maybe a lot people that already know the advice/facts, but am typing them blindly for those who don't know them at all and merely conveying the news and facts from health care professionals.

I also had migraines while watching so could only take as many notes as possible! I did not watch all the videos. I hope all the facts below prove beneficial to you all. Many facts I did not know. And look out for the new treatments coming up!

Dr PETER GOADSBY - KINGS COLLEGE

Talks about triggers.

- In the predomitary phase, just before the migraine appears, you may start to eat chocolate and salty foods and believe that those foods are a trigger, but they are not, its just what you crave as you head towards a migraine. he believes a lot of people make that mistake of thinking certain foods are a trigger. In general, he does not believe chocolate is a trigger.

- If you are in a zone/vulnerable stage of having migraines, do not do things like drink alcohol or have a late night which may take you over your threshold.

- Part of the brain that starts migraine is one that controls routine behaviour/creatures of habit. Hence the need to keep a regular routine/lifestyle. Rationale behaviour/rationale biology.

- It's not hopeless! Most who say they have tried everything have not. Perhaps people have not tried a particular medication in the right dose. What you will try today will no be the same in 6 months time. There will always be a tomorrow. There are meds in process to be regulated and are proven to work. And then the meds that will come after that are in progress now.

- Be optimistic, never give up hope.

------------------

DR SUSAN HUTCHINSON - HORMONES FOR WOMEN (I found this a very informative talk)

- A 'menstrual migraine' is when you have just the one migraine a month around your period. A 'menstrual related migraine' is one that migraine suffers experience once a month during their period as well as other times. It is the drop of oestrogen that causes it around two days before a period.

- Mentioned taking naproxen during the 'window of opportunity for a migraine' for three days.

- Magnesium (400mg) is good to take during second half of cycle to reduce severity. Cost effective and easy to buy over the counter.

- A triptan a day or two before menstrual (related) migraine is a good example as is the naproxen. Take one a day during window of opportunity.

- Migraines drop during pregnancy, even during breast feeding.

- Exercise is great for migraines as they increase the flow of oxygen. Lifestyle plays a huge part.

- Increase during perimenopause in the mid to late 40s. Can have a very low dose of birth control pill to get rid of symptoms like hot flushes.

- Women should have different treatment in different decades.

- If you naturally go into the menopause, 2 out of 3 migraines will get better, so do not have a hysterectomy to get 'rid of the problem' as the results for that are less so.

- For those experiencing endometriosis, 2 out of 3 have migraines.

- Look at every factor of your life and change the unhappiness.

-----------------------------

DR AMAAL STARLING - NATURAL BENEFITS

- Prevention is key for episodic migraines (15 days or less a month).

- Good sleep hygiene. Stable and consistent. Bedtime and wake up time should be the same. No stimulants: alcohol, cigs, caffeine. Turn of the gadgets. Don't have too little or too much sleep.

- Eat and exercise regularly.

- Exercise increases endorphins which is a natural pain relief. Should aim for 20 mins 3x a week. Tai chi and yoga are good low impact exercises if you feel anything else is too much.

- Make sure you keep a consistent blood sugar: swap three large meals to six small meals a day so that blood sugar is stable.

- Low GI/non processed/no GM foods.

- Give your self a traffic light system (in your own diary print out) per day on how you feel based on your diet. If you feel fine leave blank, green is slightly cloudy headed to red for full on migraine. Recording this per day of the month will make you see very easily how you have been feeling over that month.

------------------------------

DR WILLIAM YOUNG - BREAKING THE VISCIOUS CYCLE OF CHRONIC MIGRAINE

- Exercise is key. 30 mins a day should be done. It you have daily migraine and find that too much, work at a minimum of going for a walk for just three minutes at a time but ten times a day if you possibly can.

- Does not call it medication overuse but 'rebounds'.

(was disappointed not to get anything concrete or a complete solution on how to stop the rebounds occurring.)

-------------------

DR LARRY CHARLESTON - FREQUENT MEDICATION, HOW MUCH IS TOO MUCH?

- Overuse meaning ... not how many you take a week/month but over how many days a week/month.

- Take abortive/acute medication no more than two or three time a week.

- Overuse is over a period of 3 months or more. That is too frequent.

- Your brain has adaptive changes to the same meds (depends on what meds).

- Overuse means you need a comprehensive plan from your doctor.

- Your are more susceptible to overuse if you have family history of it.

- Overuse does not mean you are addicted to the meds.

Over the counter drugs supports most medication overuse due to the ease of getting them.

- If you take NSAIDS (like aspirin, Nurofen over the counter drugs) after 10 days in a row, that can increase your headaches.

- Meds should be taken no more than 2 or 3 times a week/8 or 9 times a month. If over 15 days, you are at higher risk.

- Meds cause other bad things like gastro problems, it doesn't just solve the head.

- For half to two thirds of patients, if you withdraw meds for 2 or 3 months, your head reverts back to baseline. And then you are our of meds overuse.

Once again, a little disappointed not to get substantial evidence of how to stop taking too much medication.

--------------------

VIDYAMALA BURCH - USING MINDFULLNESS TO FIGHT CHRONIC PAIN

- Visualisation.

- Focus awareness, focus on breathe as example.

- Let go as you look at your thoughts and watch them go by.

- Loving kindness. Being kind towards yourself, You are no good to others if you do not have it in yourself. The pass this onto a friend. And then pass to someone you find difficult. You need to climb a barrier to soften them and soften your thoughts towards them.

- Do all four 10 mins a day and can be done anywhere.

----------------------------

JOSH TURKNETT - EAT TO SURVIVE

- Kino diet: there is no evidence to suggest that this works for migraine.

- paleo diet - a maybe

- He says there are two diets 1. Farming, from our ancestors and 2. industrial, packaged food that we eat today that is processed. We need to learn from our ancestors and eat more fruit and vegetables and not food that comes 'packaged'.

- Magnesium is good and found in leafy greens/nuts.

- get omega 3s from fish/grass fed meats.

- B2/riboflavin - proved to be worthwhile.

- Not in favour of feverfew / butterbur.

- A high BMI throws stuff at our brains that it cannot regulate.

- Sugar, keep it calm, but think of balance like sleep. Added sugar is bad rather than natural sugar. the most mileage we get is from reducing sugar.

- Suspects: cereal grains (gluten, wheat, rice, barley) can be culprits.

- One of the biggest is omega 6 found in vegetable oils. They shift towards inflammation.

- Dairy: skimmed milk is processes and may notice how it effects your skin. if not then you are probably ok with it.

- Eat wholefoods (what does not come in packaging).

- Cook for yourself to control what you are eating.

---------------------------

MICHAEL STEINBERG - WEATHER RELATED MIGRAINE

- Humidity, either high or too cold can cause them.

- Stormy weather: but, is it the changes of the pressure in the atmosphere that cause the migraine rather than the storm itself?

- Lightening: as above.

- Temperature: Whether high or low is dependent on each person. The greatest changes happen in winter with sharp drops in temperature. That meaning a drop in temperature per day more likely to create a migraine, not a drop of temperature during one day such as a drop in temp at night fall.

- Dry or moist conditions do not seem to be a trigger.

- Bright lights can be a trigger in either summer or winter. Winter is worse with a low sun reflecting off of wet surfaces.

- Autumn and spring can be worse due to fluctuations in changes of weather. Most weather in summer or winter is far more consistent.

- See Accuweather for app to track when 'migraine related' days are most likely to happen.

-----------------------------

DR JOEL SAOAR - NECK & MIGRAINE, WHAT'S THE CONNECTION?

- It is a cause, symptom and trigger.

- Chiropractors will say this can happen if neck is out of line, but a neurologist will disagree as the neck is not supposed to be in line with the head.

- Triptans can help the head and neck.

- Yoga can be helpful.

- Heat may relax the neck, or, simultaneous hot and cold on the neck.

- Chiropractor's are good for lower back only, not the neck as could cause to be fatal.

--------------------------------

KATHLEEN DIGRE - MANAGING LIGHT SENSITIVTY & MIGRAINE

- She gave the theatre analogy of coming out of a cinema/theatre in the day out into bright daylight.

- If you have daily attacks, do not avoid the light, see analogy above. it is still good to have some showing to it. But when in an attack, keep away from the light.

- At work, try to have no fluorescent light, turn the contrast down on your monitor, remember the 20/20 rule (look away every 20 mins for 20 secs, 20 foot away) to stop dry eyes.

- People with migraine more likely to have dry eyes. Maybe useful to sort this problem out. Omega 3 oils and blinking and eye drops all help.

- FL41 tint in your glasses.

-------------------------

DR LARS JACOB STORNER - MIGRAINE STATS & COSTS (quite mind blowing!)

- 13% of the world's population / 950 million people have migraine!

- 0.5-1% of the worlds population / 75 million people have chronic migraine.

- 1-2% of world's population suffer with cluster headache.

- During an attack, migraneurs experience 44% disability.

- It is in the Top 10 most disabling condition in the world.

- Youngsters can lose career opportunities and some can leave work altogether.

- 2009 stats per person: ‎€1,200 indirect cost / less than €100 direct.

- 2009 stats per person with tension headache: ‎€300 indirect cost / less than €25 direct.

- 2009 stats per person with cluster headache: ‎€300 indirect cost / less than €25 direct.

- 2009 stats per person with meds overuse: ‎€3600 indirect cost.

- There are indirect costs of productivity with migraineurs, but when a healthy migraineur works, they have to add up the cost to their lives such as cost to their time, less time with family, extra stressful working hours, less social and relaxing time. And that in itself can cause more headaches.

- Education to patients and health care professionals can help to reduce cost by knowing more about the triggers etc.

- Governments should realise the severity to invest so that it ends up costing the economy less to ensure productivity.

---------------------------

DR ANDREW HARRIOTT - BEST & WORST SUPPLEMENTS

- Melatonin comes somewhere in the middle. Does not think there is enough evidence on this one.

- B2/Riboflavin for sure. Affordable and limited side effects.

- Magnesium a big thumbs up too. Although can cause diarrhoea/nausea. (several of us on here take certain types such as malate as I was recommended, which does not give you those symptoms. They do not sell in H&B though.) Can also have magnesium as slats in the bath or in IV drip.

- Vit E: not enough evidence.

- Fish oil/vit D: no.

- COq10: maybe. Evidence not as strong or as good as magnesium/B2.

- Feverfew: Agrees with other doctor and does not really recommend.

- Butterbur: Good evidence, but safety concerns with chemicals.

- Raw ginger: Can be helpful esp. for the nausea.

- Look out for quality of supplements you buy online as may not end up being the right strength. My consultant at the NMC suggested Bio Care brand which can be bought on Amazon.

-------------------------------------

DR ANDREW CHARLES - RECOGNISING & TREATING THE 4 PHASES OF MIGRAINE

- PROMONOTORY PHASE: Symptoms that occur hours before the pain begins.

- AURA: Symptoms typically before pain.

- PAIN: Headache.

- POSTDROME: Post headache. tired and cloudy headed.

- Bright light may seem like a trigger, but it is part of the promontory phase.

- Triptans are in and out of the system very quickly (short life meds). So you can take Ibroprofen at this stage to stop the headache coming on. (many of us here are recommended a sweet fizzy drink with 900mg of aspirin thrown in). Eat or drink during this time.

- Electrically or magnetically solutions: Cefaly / TMS device.

- Neuromodulation approach: stimulation of the vagas nerve - implanted in the skin and services externally. In very early days as acute or preventative solution.

----------------------------------

DR DEBORAH FRIEDMAN - NEW MIGRAINE THERAPIES IN DEVLEOPMENT (very exciting to read about the CGPR many doctors talked about!)

- CGRP: In development and has been since 1990 for acute meds. Preventative not so good. It developed liver problems and so was scrapped. Now has come back as an anti body and is almost ready for approval this year. CGRP is an anti body that clings to migraine chemicals susceptible to migraneurs. In the trials, some have gone migraine free (around 7%) otherwise 75% improvement. It improves upon frequent does of the drug. 1 by IV and 3 by injection. Could have a shot of it every few days/weeks/months. No known side effect, no liver problems. You would have to see if you are viable to it. After approval and regulation etc. it could be ready to market in the next year or two.

- Oxytocin: a nasal spray on acute migraine. the oxytocin penetrates nervous system. In conceptual studies.

- Zolmatriptan delivered through tiny needles which barely penetrates the skin in patch form. It did well in trials. It gets in quicker by bypassing the gut. The dose is gently released into the body, continuously, not all at once. Perhaps on the market in the near future.

- SHT1F: Good for those who cannot taker triptans. In trials doer number of years.

- Device: A stimulator for chronic headache. 1" long gadget. Implant implanted into the jaw bone (!). Patient controls the device when they get a headache by pressing the device against their cheek. May work as a preventative too (as mentioned by doctor above).

- External vegas nerve stimulator for cluster headaches/migraines. Acute treatment. Looks like an electrical razor. Hold it to the neck.

- Many doctors on this summit saying it is a good time to be a migraineur! many meds coming onto the market.

--------------------------------------

DR LAWRENCE NEWMAN - ACUTE TREATMENTS YOU MAY NOT HAVE TRIED

- If one doesn't work, does not mean the others won't.

- Get meds into system as quickly as possible.

- If wake in the night with them, you need a quick release solution as the headache has already began, so a tablet will not help, use a nasal spray/injector pen.

- Different meds: triptans all in tablet form / Zolmatriptan in wafer and nasal spray / Rizatriptan in wafer / Sumatriptan in nasal spray and injectable.

- They all have different doses. Preventatives start at a low dose with acute starting at the highest (but can be lowered if need be.) So some may have been given to you at the wrong does by your doctor and therefore did not think it worked. It just may have been the wrong dose.

- For quick onset headaches as mentioned above, have a nasal spray or injector pen.

- If you wait 40 mins after onset, its rendered badly as other pathways in the body are now affected by the headache.

- Some who do not take enough meds straight away will end up taking more over the period of the headache. It is good to hit it with lots of meds immediately.

- He also recommends: B2, magnesium, COq10, Cefaly, TENS unit, GammeCore.

- Studies are mixed on whether acupuncture works.

- Believes CGRP will be revolutionary.

- Marijuana: no evidence.

-----------------------------------------

DR RICHARD LIPTON - AVOIDING A&E/ER

- Also mentions non tablet form as the digestive system gets cut off.

- Identifying triggers and habits. Also advocate on lifestyle, food and exercise.

- Also praises B2/Riboflavin at 200mg per day.

-----------------------------------------

PROFESSOR PAUL MARTIN - BEHAVIOURAL TREATMENTS

- Stress biggest factor of migraines.

- Also recommends eating regular and staying hydrated.

- The cause of stress should be dealt with otherwise it is hard to beat with a pill.

-------------------------------

THANK YOU FOR THE MIGRAINE WORLD SUMMIT FOR PUTTING ALL OF THIS TOGETHER:

***** FOR MORE INFORMATION ABOUT THE MIGRAINE WORLD SUMMIT: bit.ly/HealthUnlocked-Summit *****

Last edited by

27 Replies

oldestnewest
  • I take part in the summits to 😁

  • Fantastic. Huge Thanks from me.

  • Welcome

  • Thank you so much for sharing this invaluable information with us😁

  • Glad you enjoyed

  • Thanks for posting this information - there are some new things that I can try!

  • Found some new advice too!

  • Hello - In case you missed the Summit, you can still get access to watch all of the speakers' talks here, plus audio and transcripts to watch anytime at your own pace:

    bit.ly/HealthUnlocked-Summit

  • Wow this is so informative. Thankyou very much for taking the time to summarise it. I watched a few of the talks aswell.

  • Very welcome, hoped it would help others.

  • Hi,

    I was on holiday while the summit was on, annoyingly, but I managed to listen to the majority of the talks but I found a lot of it quite irritating. The titles of the talks were very misleading, they often said things like 'best and worst' like the one on supplements to take and then they didn't actually say any of the worst ones, they also didn't give us any specific details about any of the research done into their efficacy so we can't check any of their sources. My specialist says there haven't been recent or convincing studies on the efficacy of magnesium for years and yet it mentioned in so many of the talks. I would have loved to have known their sources so could check myself.

    There was absolutely nothing for pregnant women or women trying to conceive except a couple of things no one will let you have in the UK. All the advice for how best to take Triptans cannot be applied to anyone with chronic migraine, which I have. If I followed their advice I would have my '6 Triptan days' all in the first week and then would be in agony for the next three weeks as I wouldn't be allowed anymore bc of rebound.

    They had one lecture which was billed as being an explanation into why triptans can fail to work and then told us precisely nothing about the mechanism that stopped a triptan working. I would have loved to know why on a biological/medical level they don't work and was very disappointed with that one too.

    I thought the summit was a great idea and despite being in Mauritius I could access all of the talks, but I did find it seems not so useful if you were not American. I definitely think they should have chosen the lectures titles more carefully as I was frequently disappointed and I think they needed to publish their sources. Your write up seems pretty accurate though judging by what I heard, it is very good of you to take the time to write it up for everyone.

    I hope the new treatments don't take too long to come to us, I campaigned for 6 years to get Botox, we almost didn't have children bc I was hanging on for it bc I was so ill. I finally gave up and as luck would have it was finally offered Botox when I was 6 months pregnant so they couldn't give it to me anyway and then forced me to give up breast feeding early bc they wont give it to you then either. The reality is if you have chronic migraines you are women of child bearing age who wants children then there is still nothing out there for you. I was hoping the talks would give me something although I appreciate they might be useful for anyone who is not like me!

  • I understand your annoyances! I am sure there are many medical professionals who would disagree with each other so it proves hard to know who's advice to take. Interesting what you say about women's situations. Thanks for that.

  • Omg !! Thanks so much for taking the time to share... I'm just about at rock bottom having been told to just accept there is no cure and it's something I have to live with for the rest of my life.., I feel after reading this that there's actually some hope... thank you xx

  • Great! Exact reason for wanting to share. The summit did a great job.

  • Thank you! Thank you! Thank you!

    I've suffered my entire life with daily headaches and chronic migraines. I thought I had tried EVERYTHING plus some. I'm really hopeful for some of the new meds coming out.

  • The Migraine Summit doctors made a very big point of saying there are always other options to try as well as new meds coming onto the market. I hope something helps! Esp. the CPRG a few were raving about. 'Revolutionary' one said.

  • You are a superstar designer111 !

    It was so good of you to take the time & effort to submit these notes, very much appreciated, thank you so much. ☺️

  • Very welcome, The Migraine Summit did a great job.

  • Thanks for this.

    I watched a number of interviews & took notes. I have not yet had time to organise them. Unfortunately I'm currently laid up with 3 slipped discs ugh! But once I feel better I will organise and try to add to what you've done so well. But please no one hold their breathe while waiting, it could be weeks!

    I have to say the pain of 3 slipped discs somewhat overshadows the migraines, but I really wouldn't recommend it! LOL!!!

    Thanks again, Catherine.

  • Sorry to hear about the back! I'm sure everyone would appreciate other notes, thanks.

  • Thank you

  • Thank you for sharing this. I took lots of notes to research and ask my neurologist about.

  • Great glad it was useful

  • Thanks so much for this. I have tried to watch all the talks but I either fall asleep or can't concentrate for so long and nothing really goes in. To have this in a nutshell is brilliant and must have taken you hours. The bit about not to swivel or bend your neck confused me as I was told to do neck and shoulder exercises daily, however after reading that I think that I should do them while in an episode. Will certainly stop now. Nice to see the Gammacore mentioned (great help to me) . I was very complacent and feeling so much better that when I went on holiday I allowed myself a little tipple. I now know NEVER to drink any alcohol. 😩 Thanks again

    X

  • Welcome, I have been having the same problem with even drinking tiniest of alcohol. Perhaps make sure you eat before and after and mix with plenty of water?

  • fabulous summary - thanks so much for doing this - will share !

  • Glad it was helpful!

You may also like...