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

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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. http://www.migraineworldsummit.com/?afmc=1k

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.

CGRP

-        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."

Response?

-        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.

Gepant?
-        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.
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Thursday, 30 April 2020

The Migraine World Summit: Day 6


*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. http://www.migraineworldsummit.com/?afmc=1k



Non pharma approaches for migraine?

Every migraine patient should be taking magnesium.

-        Up to 50% of migraine patients are deficient in magnesium
-        Serum magnesium blood test is unreliable – best for everyone to try taking magnesium

Diets are often poor in nutrients. Stress and chronic illness deplete nutrients. Even if you have a very healthy diet, TAKE THE SUPPLEMENTS.

Genetic factors:

-        Vitamin deficiency
-        Not absorbing nutrients properly
-        Kidney problems – mag deficient

 Which supplements are good for migraine?

-        Magnesium
-        CoQ10
-        Vitamin B2
-        Vitamin B12
-        Feverfew
-        Frankincense

Magnesium:

-        Only helpful if deficient, you have a bout a 50% chance that it will help
-        Some people are unable to absorb it properly and need an injection
-        400mg per day. Some take this dose twice a day.
-        Take it with food. Don’t take with calcium.

Symptoms of magnesium deficiency?

-        Cold hands
-        Night cramps
-        PMS
-        Brain fog
-        Palpitations

Ribolfavin?

-        Vitamin B2
-        Trial – took 3 months to work
-        Makes your urine turn bright yellow
-        Not to be used in pregnancy

CoQ10?

-        1/3 migraine patients are deficient
-        Effective if deficient
-        Harder to tell if deficient usually best to just try
-        100 – 300mg daily dose
-        Best to take in morning as can give people energy

Butterbur?

-        150 mg better than placebo
-        Toxic as plant
-        UK and Germany don’t allow product

Feverfew?

-        Grow your own
-        Eat in in a salad or add to tea
-        Very safe
-        Its very effective for some patients
-        Good to get it from Germany as they are very rigorous in their manufacturing protocols

Ginger?

-        Anti-inflammatory spice
-        Ginger capsules for anti-nausea

 Should we introduce the supplements one at a time?

-        If clear there is a mag deficiency then best to start there
-        Add a few at a time just don’t start them all on the same day

Swedish study: 40,000 migraine patients. Frequency of exercise up – less headaches.
3 groups of patients

1)     Topamax
2)     Relaxation
3)     Exercise

All 3 groups did equally well at reducing migraine.

Magnesium can be very dangerous if you have poor kidneys.
People can have allergies to supplements too so something to consider.
Pregnancy- avoid any herbal supplements

How to approach non pharma options with your Doctor?

-        Come prepared to appointment. Bring the scientific paper as evidence for why you want to try something.

You have many options and may don’t involve medications”.


Neuroplasticity
-        Our brains are wired to change
-        Activities we engage in can strengthen or weaken these circuits

Mindfulness
-        Intentional practice
-        Paying attention to present moment without judgement

Focusses attention
-        Focus on breath
-        When thoughts/emotions arise. Notice them, acknowledge them and then let them go.
-        Non-judgmental and focus on breathing

Open monitoring
-        Tuning into other sensations
-        Being aware without appraising them
-        Takes practice to be able to learn to do it

How does mediation change the brain?

-        SNS (fight or flight) vs PNS (calm) – mindfulness enhances our parasympathetic nervous system.

-        Neuroimaging during meditation: the areas of the brain that light up; emotional regulation, concentration and attention.

-        Brains of meditators have differences to non-meditators. Hard to tell if they are born with it or there are changes in the brain due to meditation itself.

-        Change the structure of the brain – mindfulness – focussed intended practice – not relaxation

Stress is the number one reported trigger for migraine

Stress has two parts:
1)     Our perception of the stressor
2)     Our response to the stressor

Let down stress linked to migraines – the change in level of cortisol.

Mindfulness meditation & chronic pain research?

-        Global research
-        May help people relate to headache and improve disability associated to headaches
-        Emotional control

-        New York study looking at mindfulness – changes in disability – decreased disability
-        Pilot study – stress reduction – improvement in headache duration

-        Italy – study with CM patients with 20+ headache days & MOH. 2 groups (1) meds, 2) mindfulness). Both groups reduced severity, frequency and intensity of attacks. Not randomized study so potential bias.

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Tuesday, 21 April 2020

The Migraine World Summit: Day 5


*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. http://www.migraineworldsummit.com/?afmc=1k

Why can’t people with chronic migraine skip meals?
The migraine brain does not tolerate any change in routine well.

Why is intermittent fasting dangerous for chronic migraine?

-        Normal things already trigger a migraine so easily such as exercise and menstruation
-        If you are fasting on religious grounds and you have CM then please speak with your church leader as you shouldn’t be fasting and normally allowances are made for medical reasons.

Is weight associated with migraine?
-        Overweight association with more migraines

Why? (possible hypotheses)

-        ­fatty tissue – inflammation – promotes migraine
-        Obese – leaky gut syndrome
-        Postural factors – more pressure on lumbar and cervical spine
-        Fatty tissue modifying hormones

Migraines association with weight gain also contributed by medications that can cause weight gain as a side effect.

Topiramate – only 10- 15% will experience weight loss.

How to lose weight if you do have migraine?

-        PATIENCE
-        Drop calories
-        Glucose regulation
-        Drink more water
-        Increase your protein and veggie intake
-        No refined sugars
-        Reduce portion size

Sleep is key for weight loss.

Focus on why we eat! Is there an emotional component to our eating behaviours?

Exercise helpful for both mood and weight loss!

How about the Ketogenic diet?

-        Some evidence – regulate sugars – help migraine
-        Not safe diet for everyone and very difficult to stick to

Hydration?
-        Hydration is so important

Vomiting & dehydration?

-        Acute therapy to control
-        Sip on electrolytes
-        Sometimes iv fluids are necessary

Food and drink to boost hydration?

-        Vegetables. Careful with fruit as lots of sugar
-        Water and herbal teas
-        Add some lemon, mint or cucumber to your water to add some extra flavour
-        Coconut water? Why not.
-        Gatorade? For mild to moderate exercise its not necessary

Should I focus more on healthy lifestyle or food triggers?

-        HEALTHY LIFESTYLE FIRST
-        Trigger lists are rarely effective unless patient knows specific foods
-        Worrying over food triggers tends to increase anxiety and the lists of potential ones are endless.

What is CGRP?

Calcitonin gene related peptide

-        Small protein made up of 37 amino acids
-        Increased during migraine attack
-        Induce a migraine in health participants

Central nervous system (CNS) – Brain & spinal cord

Peripheral nervous system – outside of the CNS. Connecting the CNS with organs and blood vessels

Is CGRP all bad?
Maybe helpful in protecting against high blood pressure

Triptans?

-        Restricting vasal constriction
-        Inhibits the release of CGRP

Gepants?

-        New drug
-        Antagonist receptor of CGRP
-        Binds to CGRP receptor (stops CGRP doing its thing and inhibits binding)

Antibodies?

-        Binds to the molecule itself (Ajovy & Emgality)
-        Binds to the receptor (Aimovig)

Will there be issues of MOH with the gepants?
-        Hopefully not the case as with other pain meds as works differently

CGRP side effects?

-        In clinical trials – no real side effects
-        Don’t have enough data yet to know potential longer-term side effects
-        Cardiovascular safety?
-        In clinical practice – mild side effects (constipation and injection site reaction)

Pros & cons?

-        PRO: first drug specifically for migraine. Tolerability is very good.

-      CON: Need to know more about long term safety. Access to treatment is tricky for some. Doesn’t help everyone (not a cure).


Photophobia

-        Extreme sensitivity to light
-        Light makes pain wore (aggravates the pain)

Light is painful to blind people. This is why they wear sunglasses.

Vision and pain are two different pathways so doesn’t make sense?

Optic nerve – required for photophobia or trigeminal nerve?

1)     Blind patients with no optic nerve – no photophobia
2)     Light without sight patients – photophobia

In order for photophobia to occur, optic nerve must communicate with migraine pathway.
Neurons in a distinct area of the thalamus (which process pain), receive a direct input from the retina through the optic nerve into these neurons. We can see that these neurons fire up with light.

Why migraine patients have visual disturbances?

Visual cortex
75000 websites about filtering out blue light. Only true for blind patients. If you only block out blue light it won’t make a difference.

Blue and red light make head more painful.

Yellow and white also painful but less so than blue and red.

In contrast green light has the opposite effect. Green light decreases headache and autonomic symptoms.

Light increases the intensity of pain by about 20-25%.

-        Sunlight uncomfortable for migraine patients
-        Flickering lights – exacerbate headache

Can we get green light to help us?

-        YES. Green lightbulb currently $250. It will get cheaper over time. Already come down in price a lot.
-        Company aims to bring green light to migraine patients who need it

Testing green light in real life?

-        When patients exposed to green light for 2-2.5 hrs their pain goes away or is improved by 80%.
-        Patients also report that they feel less anxious, brain fog lifts and their cognitive function improves.

Should we be using glasses/screen filters?

-        Cutting down on blue light is a good thing for everyone
-        To filter it out properly would cost thousands of dollars
-        They filter out some of it but not all of it

Sleep in the dark is important.

Emotional component – aversion to light better definition than phobia.


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