Sunday, 20 September 2020

My experience with the Allay Lamp

I have been fascinated by the Allay lamp ever since I first heard about it during this year’s Migraine World Summit. Dr Rami Burstein (Harvard Medical school), shared the science behind green light therapy and how the innovation of the Allay lamp could help migraine patients. So, I was excited when Allay offered to send me the lamp to try out as I was very intrigued to see how it would help with my pain and light sensitivity. 

What is the Allay Lamp?

The Allay lamp is a “non-irritating lamp for migraine patients”. It emits a specific narrow band of green light that has been found to not only be a tolerable light source for migraine patients but also help reduce their symptoms. It was designed in order to try and enable patients to continue to function using the light of the Allay lamp and avoid having to retreat to the dark.


Light sensitivity and migraine?

80% of migraine patients report light sensitivity as one of their symptoms. In fact, it’s part of the diagnostic criteria. Chances are if you are light sensitive with a headache, you’re experiencing migraine.

Like many other chronic migraine patients, I’m never without my sunglasses and find the darker months during Autumn and Winter particularly challenging due to the need for artificial lights. I struggle with the contrast of the dark outside and artificial lights in my home from lamps.

Science behind Allay and green light therapy?

Dr Burstein found that light is not only bothersome for migraine patients but that it actually makes their pain worse. Light increases the intensity of pain by about 20-25%.

He specifically found that blue and red light make the head more painful whereas green light had the opposite effect. Green light decreased head pain along with other autonomic symptoms.

Dr Burstein conducted further research and found that migraine patients who were exposed to green light for 2- 2.5 hours experienced a reduction in their pain along with a lift in brain fog, less anxiety and improvement in cognitive function. To read more about the science of light sensitivity, see my notes from the Migraine World Summit talk here..

How much does it cost?

The lamp costs $149.  You can get get $25 off by using my referral link.

http://allay.refr.cc/themigrainelife

First impressions?

Of course my main hope with the Allay lamp was that it would help my pain or symptoms in some way but I was pleasantly surprised that it also looks pretty stylish too. When it arrived it honestly felt like receiving an Apple product due to the super chic, minimalist packaging and branding. The lamp itself is sleek and compact and has an attractive casing around it. I later learned that this casing not only looks good but is crucial to the function of the lamp (more on the casing later on).

The lamp was easy to set up and comes with a USB charging cable. Once fully charged the lamp lasts for 32 hours. The Allay also comes with an adjustable shade so you can have maximum control over where you want the light to be.
There is a touch power button on the top along with a simple drag button to change the intensity of the light. If you flip the lamp over it also doubles up as a regular lamp which is a really nice touch. It has a lovely soft focus due to the casing material.

 After testing out the lamp for a few weeks myself at home I was fortunate enough to speak with Dr Burstein. I had the chance to ask my questions and some of your burning questions you had also sent me. Our talk was extremely informative and helped me to realise I was actually not using the lamp in the most effective way.

Questions for Dr Burstein
Why can’t I use a regular lamp with a green LED?

It took a long time to develop the right casing to allow the right wavelength of light from the Allay. It is the exact material that allows the right type of light through. A regular green LED lamp would not work - it’s too harsh!

Should I sit and stare at the lamp during attacks?

No. Don’t sit and stare directly at it. This was a mistake I made. I thought I had to sit and stare directly at the lamp during an attack. The contrast of doing this in a dark room was actually a little too much for my eyes. Dr Burstein recommends placing the lamp up high somewhere in your room either on a shelf or mount it on the ceiling and let it illuminate the entire room with green light. You do not need to sit and stare directly at the lamp.

Do your eyes need to be open?

Yes. The green light needs to get into your eye in order to get to the brain.

Acute vs Preventative?

Before speaking with Dr Burstein I had been solely trying to use the lamp to treat acute attacks. Chatting with Dr Burstein I realised that in fact it was created more with the intention not to treat attacks but to allow patients to continue going about their daily life without having to go and be in complete darkness in bed. The aim is that it allows patients to continue with daily routine without exacerbating their headache from light. I was surprised to learn that I was the first patient who had asked him specifically about using it to treat attacks whilst in bed. Most of the other patients he had spoken with were using it as an alternative light source to minimise migraine symptoms instead of a as a specific acute therapy.

Does it need to be pitch black when I use the Allay lamp?

No. It needs to be dark ideally but we don’t want to replace darkness with green light. It should be used instead of another light source.

Dr Burstein also stressed that the Allay lamp won’t work for everyone. The findings from the study were really encouraging along with what’s being reported by patients since the launch of the lamp but there is still no one treatment that works for everyone with migraine. Most patients have found the lamp to be soothing and calming.

If you are photophobic with migraine the Allay lamp should eliminate that element of your attack so you don’t HAVE to be in a dark room.

My experience?

The bit you have all been waiting for. I’ve been asked so many times since mentioning the Allay lamp on my Instagram “does it work?!”. I’m still experimenting with the lamp and using it in different positions and on different intensities of light but this is where I’m at with it so far.

I LOVE using it in the evenings as an alternative to a lamp. I use it whilst I’m in the bath and getting ready for bed. It means that I don’t have to use a lamp or main room light which would normally hurt my eyes. I was forever using cushions to block out the direct light from a lamp. With the Allay I don’t have to do this. It allows me to see but the light it emits doesn’t hurt my eyes or make my pain worse.


When using the Allay lamp at night I find that the contrast between the dark and the green light is too much for me to directly stare at the lamp or have it in my line of vision (as Dr Burstein suggested it might be). I find if I place it in my room to the side or behind me it works best. This allows me to benefit from the green light without staring directly at the lamp itself.

I haven’t found it as practical to use in the summer months except from close to bedtime as it’s been light enough outside that I haven’t been needing any extra artificial lights. If you’re anything like me, you will avoid turning on lights inside until it’s absolutely necessary. As we enter into Autumn and it begins to get darker earlier and earlier again, I’m excited to have a new light source that will hopefully allow me to function for longer without having to go to bed. I think it will be really useful when I’m cooking for example and would normally have to rely on big overhead lights in the kitchen.

The part I was most intrigued about was would the Allay lamp reduce my pain during an attack.

I’m still testing this out but so far, my answer is unfortunately no. The lamp does however allow me to be in a room that isn’t completely blacked out which is nice. The severity of my pain is usually what sends me to bed as opposed to my light sensitivity. I have found that during the day if I have to go to bed with an attack, the green light does relax me and help with that initial anxiety at the attack sets in. I personally think it’s quite challenging to test the effectiveness during an attack as you have to balance the right level of dark and also have to keep your eyes open. When my pain is bad, I can’t help but crawl into bed and close my eyes. I have found it to be really useful for lower level attacks where I haven’t had to go to bed properly but still need to be resting somewhat in my room. It provides me with a light source that doesn’t irritate me or make my symptoms worse.

So in summary, I would definitely recommend the Allay if you are photophobic with migraine. It’s amazing to have a light source that doesn’t make you wince and screw up your face when you look at it.

Will it replace my triptan and Cefaly combo for attacks? Sadly not, but I will keep testing it out during attacks especially during the darker months and let you know how I get on.

 It’s important to note that I’m on the more extreme end of the scale with migraine. I have chronic migraine with daily head pain. My pain and attacks are more difficult to treat than say your typical episodic migraine patient.

Have you tried the Allay? I would love to hear your thoughts and how you are getting on with it?

*Allay gifted me the Allay lamp to try in exchange for a review. All opinions expressed are my own. Please note that the referral link for $25 off is an affiliate link.

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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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