Wednesday 20 May 2020

5 reasons you should keep a headache diary

A recent poll on my Instagram page showed that 41% of you don’t keep a headache diary. Some of the most common reasons for not keeping one were the following;
· Forgetting to do it.
· Not having enough time.
· Not sure how to do it/what to record.
· A lot of you said that you have kept one in the past but now have stopped/ don’t see the point 

Personally, I’m a big fan of keeping a headache diary and thought I would share with you some of the reasons why.

1.    Keep track of how you are REALLY doing: It’s so hard when you have daily pain to know if it’s been a bad week/month etc if you don’t record anything. It can seem all doom and gloom when in reality it might just have been a bad few days or weeks. Similarly, it’s so useful to look back over several months or even years and compare how you are doing now, compared to then. My headache diary gives me a really clear insight into how I was doing, months or even years ago. Keeping a headache diary massively improves accuracy. People tend to under or over estimate the number of headache days and migraine attacks they experience. It’s just as important to know how many headache free days you have per month, as it is number of migraine attacks.

2.     Access to treatment: Headache specialists stress the importance of keeping a detailed headache diary and for good reason. Not only does it provide your doctor with a greater insight to what is going on day to day, it also allows them to make informed decisions about your treatment plan. Certain treatment options such as Botox for example require you to have several months of headache diary data before you will be approved for treatment. With the costs involved in the new anti- CGRP drugs, I expect there will be similar criteria to Botox for these new drugs. Keeping a detailed headache diary is only going to help you gain access to these new treatments.

3.     Help your doctor help you: Sadly, there is no simple test for migraine. Doctors largely have to rely on what you tell them about your history and symptoms. A headache diary should be your best friend in appointments. One of the first questions they might ask you is “how have you been?” or” what’s your head been like over the last 3 months?”.  I’ve been told by headache specialists that it can be incredibly frustrating and difficult to get a clear picture of what’s been going on with a patient when they haven’t kept a diary. They are likely to answer with “bad every day”. The chances of it being exactly the same level of “bad” every day, at all times of the day, is highly unlikely. Help your doctor help you by keeping a detailed diary that you can go through together at appointments. Try and record what information you find useful and also don’t be afraid to ask your doctor for ideas of what they would like you to record. Some headache specialists have headache diary templates they like their patients to use. Remember it’s a two-way relationship between doctor and patient. To get the most out of your appointments it helps if you’re working together.

4.     Keep an eye on medication intake: I know all too well how easy it is for painkiller days to rack up throughout the month. Medication is a key component of most headache diaries. It allows you to keep track of what you are taking and how often you’re taking it. I don’t like paying too much attention to painkiller days throughout the month as it can create a lot of anxiety and stress about “whether I have enough painkiller days left”, but it’s important to note down when you do take pain meds in order to keep track and minimise the risk of medication overuse headache (MOH). It can also be useful to look back retrospectively to see if certain triptans, or combinations of pain meds have worked more effectively than others.

5.     Spot patterns: Any data you can record that might shed light on your migraines and any patterns or trends that they follow is so helpful. It can help you discover triggers, along with patterns associated with menstrual cycle, sleep and activity levels for example.

I recently shared a blog post all about how I like to do my migraine diary, which you can read here.

If you feel overwhelmed or confused by starting one yourself, there are some good apps out there such as MigraineBuddy and N1-Headache that might be a good option for you. I’m happy to send you a template or give some suggestions if you’re still struggling.

Do one that works for you. If you find apps take too long or you always forget to write it down in a diary, then just record a few notes on your phone each day. Some is better than none!

*Photo by Jonny Caspari on unsplash


Tuesday 5 May 2020

The Migraine World Summit: Day 7

*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.

CGRP: Calcitonin gene related peptide

-        37 amino acid peptides

-        Very specific target

What excites me is the biology is giving credibility to the field”

This step forward in research and knowledge about migraine will bring new people into the field.


-        Aimovig – monoclonal antibodies – binds to receptor
-        Ajovy & Emgality –  goes directly to peptide itself (mops it up)
Block pathway and just that pathway.

Side effects – limits?

“It’s a marker of how disabling migraine is. The fact doctors will inform patients of side effects and patients still say.. .oh ill take one of those. The disorder is still worse than the horrible side effect symptoms."


-        Some super responders
-        Some high expectations – show no response
-        Some failed 7-8 treatments and now doing so much better.

Eptinezumab (IV drug)
-         Targets the peptide, not receptor (mops up the receptor)
-        Onset of action is key

-        Think twice for cardiovascular patients and those with hemiplegic/basilar migraine. Caution rather than specific data telling us it’s not safe.

-        CGRP is fine to use with other drugs such as Botox and topiramate.

Neuromodulation devices?

-        Devices that don’t interfere with reproductive process is a good idea
-        Migraine demographic – women – peaks at age of 40 – escalating migraine in 20’s and 30’s
-        Very helpful tools to use

Cefaly: Branches of trigeminal nerve

Gammacore:  vagus nerve – inputs into pain – cluster headache patients

Stms:  Cortex- brain matter how it interreacts with the thalamus

Treatment works directly for attack and no MOH. Might as well use it daily as a preventative.

Nerivio:  new device to be worn on the arm (acute). Distraction from pain.
-        Body ignores the fact you’re wearing clothes
-        Brain selecting what to attend to and filters out signals such as that you are wearing shoes for example.
-        Stimulate arm via the Nerivio – filter out other signals – pain in head is perceived as less.

Acute meds?
-        Ditans
-        Reyvow (Lasmiditan): serotonin 1F receptor antagonist (only on nerves. Turn off pain nerves, no vasal constriction). Side effects – dizzy but no chest tightness like some experience on triptans.

-        Antagonist
-        CGRP receptor blocker. Small molecule. They come on and off and compete with CGRP.

      Gepant VS triptan for acute therapy?

-        Gepant: 20% pain free within 2 hours (<2% side effects)
-        Triptan: 30% pain free within 2 hours (30% experience some side effects)
-        Gepant appears to be very well tolerated so far

-        Prevention with Gepant? Potential to use daily as shouldn’t be a problem with MOH.

“What sort of month is it when you don’t know what you can do because of triptan days. Moving towards an era when you can do what you want to do.”

Final thoughts from Professor Goadsby

-        Maintain a new optimism. “if someone says you have tried everything, it might be true today but next week or in a month or two that’s almost certainly going to be incorrect”.

      Never give up hope. Its not just a word to use. The science and the effort that’s going on is turning hope into reality. It will change, just stick with it.