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.

How I keep my headache/migraine diary

I have kept a headache/migraine diary since my very first neurology appointment in 2015. It’s one of the best things I have done and has provided both me and my doctors with in-depth information about my migraines and how they have developed and changed over time.

I have tried numerous apps, such as Migraine Buddy but personally I prefer to track them myself, using good old-fashioned pen and paper. I would say the most important thing, is to do a headache diary that works for you. If you find the apps useful and you use them daily then great. If not, I hope my own way of doing a headache diary might give you some ideas of how you could layout yours.

Essentially, each day I record two numbers. A pain score (an average of the day) and an activity score. I score my pain out of 10 and my activity on a 1-5 scale.

The key with recording these numbers is to be consistent. My scale is slightly skewed because I always record my pain quite low (for example, migraine is at about a 6 and I never record much higher than a 7/8). It doesn’t matter how you do it, as long as when you record a 6 for example it’s consistently a “6” the next time you record it. You will start to recognise what level of pain you are at on YOUR scale. This can also be extremely helpful for opening up lines of communication with your loved ones. They will start to understand what different pain and activity scores mean for you and what you're able to do/not do, depending on the level of disability associated with that score.

My biggest tip though is to give yourself room for there to be a noticeable difference. For example, I’m functional at a 5 but not at a 6. It’s very tight on my scale.  It would be a lot easier if my migraine was (7-9) for example.

So, each day, along with recording my pain and activity. I also make a note of any medication I have taken (not daily meds) and I mark an X if I had a migraine attack (usually obviously from pain recording and medication). If you have pain free days, it might be useful to note these down with a tick symbol instead of an X for example, or you can just count up any "0" days in your pain column.

Anyone else dreaming of a 0 pain day right now?

Moving on...

I record this is in a super simple way in my bullet journal. It’s clear to see across the month how my head is doing and how many migraines I have had. It’s also really easy to keep track of how many painkiller days I’m on. Before I started recording it like this, I used to just use the notes in my phone. I would record the two numbers and a short note of the day.

“Monday: 5.2. Short walk this morning. Didn’t feel good when got back. Rested in afternoon”

Every few months I will put my headache diary numbers into an excel spreadsheet for my master headache diary. From here I can easily compare my migraines across different months and even years. It allows me to create simple but effective tables for my neurology appointments that show all the key information such as;

- total number of headache days

- total number of Migraine days

- average pain for month

- average activity for month

- total number of painkiller days

Make sure you clearly explain to your doctor how your headache diary works and what the numbers mean for you. Your 5 might be another patients 8. 

If you are someone who doesn’t see the point in keeping a migraine diary because “it’s bad everyday” please please reconsider. There is likely to be some variation with your activity levels, even if your pain score stays pretty consistent. Its such useful information to have and often when you reflect back over a longer period you realise oh it’s not actually been a dreadful month, just a really bad week. Many migraine treatments also require you to have kept a headache diary to see whether or not you’re eligible for a particular treatment.

If you have any questions or would like help setting up a headache/migraine diary that works for you please don’t hesitate to send me a message and I will be happy to help.

Dolovent: The 3 in 1 supplement for migraine #AD

I’ve tried several migraine supplements before but have always found it difficult to find the recommended doses. Combining all the key ingredients together can mean you end up taking so many different tablets. So, when Nouveau health first told me about Dolovent™, I was excited to try a supplement for migraine that contained all the key ingredients in one easy to take capsule.

What’s in Dolovent?

Dolovent™ contains three supplements that are known to help with migraine along with many other useful vitamins and minerals.

The three key players are;

Magnesium (magnesium oxide)- 600mg (per daily dose) 

Riboflavin (vitamin B2) - 400mg (per daily dose)

Coenzyme Q10 (CoQ10) - 150mg (per daily dose)

Recommended daily dose is 2 capsules, twice a day.

What does the research say?

There are randomised clinical trials to support the efficacy of magnesium, riboflavin and CoQ10 in migraine patients.

Magnesium:

• Magnesium has been shown to be lower during migraine attacks and often deficient in migraine patients. (Ramadan et al 1989, Trauinger et al 2002.
• Magnesium at 600mg works as a migraine preventative. Significantly decreasing migraine days and medication taken. (Peikert et al 1996).

Riboflavin (vitamin B2):

• Schoenen et al 1998 found that 59% of migraine patients who took 400mg riboflavin daily for 3 months reported a 50%+ reduction in migraine attacks.

CoQ10:

• Rozen et al 2002 found that CoQ10 does work as a preventative treatment but it could take a few months to really see a big improvement and reduction in migraine attacks.
• Migraine frequency was reduced by 13% after 1 month of use compared to 55% after 3 months of taking CoQ10.

Dolovent™ Clinical Study:

Gaul et al 2015, did a randomised, placebo controlled, double blind and multi-centre trial on 130 migraineurs and found that Dolovent™, containing all three of these supplements resulted in a reduction in migraine days. Although this result was not statistically significant, participants in the supplement group reported lower pain and they also had a reduced score in the Headache impact test (HIT). This test is often used by doctors to assess the burden of disease migraine has on an individual.

Why should I take supplements for migraine?

                                                        

Migraine is a chronic neurological illness which currently has no cure. In order to manage migraine as best as possible there are both preventative and acute options that can be used.

Managing migraine is often far more complex than simply taking a preventative medicine. It requires lifestyle adjustments (sleep, exercise, diet & stress management).

Supplements are a great place to start if you are looking to try a more “natural” preventative treatment. Or perhaps you already take a migraine prophylaxis and have made lots of lifestyle adjustments and are still struggling to manage your migraines. Then why not give supplements a go?

Where can I buy it?

You can buy Dolovent™ direct from Nouveau Health’s website. They cost £36.88 for 120 capsules (1 months’ supply). Nouveau Health have kindly given me the discount code TML10 for you to use which will get you 10% off your order. If you purchase 3 bottles you will gain free shipping.

Are there any side effects?

If you have ever taken Riboflavin before you will know that it can cause your urine to turn a fluorescent yellow colour. Don’t be alarmed, this is totally normal.

If you haven’t taken magnesium before, or know that your stomach can be sensitive to it then I personally recommend you start slowly and build up to the 4 capsules a day to try and reduce the risk of an upset stomach. I gradually built up to 4 capsules a day over the course of a few weeks.

Please check with your doctor for possible interactions with other medications or if you have any other concerns before taking Dolovent™.

My experience with Topiramate

  *DISCLAIMER*

I am not a doctor. I cannot tell you what you should or shouldn’t take for your migraines. For medical advice you should always seek the advice of a doctor or health care professional.

I want to share my honest experience of Topiramate with you but I’m by no means suggesting you shouldn’t try it. What works for one person’s migraine treatment is completely different from what works for someone else. Topiramate often gets a bad rep in the migraine community but it really can be an effective migraine preventative for some people.

I have always tried to be careful on Instagram when individuals ask me about the drug as I don’t want to scare anyone off something which could potentially be a game changer for their migraines. Topiramate was not for me, but it could be for you!

Topiramate (Topamax) is an anti-epileptic drug commonly used as a migraine preventative treatment.

I started Topiramate in August 2015 and stayed on it until January 2017. I was initially on a 25mg dose and slowly worked up to 100mg twice a day. The only other preventative I had tried before Topiramate was Amitriptyline.

When I look back over the time I was on Topiramate, all I can think is wow, we really will put our bodies through an awful lot in any attempt to get better.

Topiramate never seemed to make a difference to my migraines. It didn’t work as a preventative in my eyes as it didn’t change my daily head pain or massively reduce my number of migraine attacks in a month. I stuck with it for a long time hoping that when I eventually was on a high enough dose, I would see some relief.

Relief sadly didn’t come for me. Instead a whole load of unpleasant side effects…

It started quite mildly on the lower doses. I would get pins and needles in my hands and feet. My taste changed and certain foods I had previously enjoyed tasted “off” to me. I also could no longer have fizzy drinks. They tasted so strange and horrible. (you would think not being able to drink fizz for 18 months would be a sure way to kick the Diet Coke obsession... sadly not!) I think I will forever love a Diet Coke and an orange Fanta!

Pins and needles and no fizz are really not a big deal when you’re fighting chronic pain but as my dose of Topiramate continued to increase, so did my side effects.

I began to have no end of stomach issues and started to lose weight. At some points I was having daily diarrhoea as a side effect of this drug. For some, Topiramate can be a massive appetite suppressant. It did suppress my appetite but I think I lost weight mostly because my body wasn’t absorbing food and nutrients correctly (hence all the diarrhoea).

As you can imagine it was a really unpleasant side effect to have to deal with on top of the migraines. I started to wonder whether it was the Topiramate unsettling my stomach or the migraines itself.

I lost just over a stone whilst on Topiramate. A stone I didn’t need to lose. My friends and family started to notice and of course were concerned by my increasingly thinning frame. I couldn’t get over how my once strong tennis legs were wasting away to thighs that didn’t belong to me.

I was struggling to maintain my weight so I made a real effort to try and put some weight back on (alllll the snacks). I’m lucky that it was something I hadn’t had to worry about before. I have never been under or over weight. I’ve always just been “normal” with a good appetite and a love of food.

My headache practitioner nurse did suggest when upping the doses to try and have smaller more regular meals (4-5) a day instead of 3 but I actually really struggled with that. I mostly continued with 3 meals a day but tried to add in some extra calories where I could.

Another fun side effect of Topiramate was that my hair began to fall out. I have always had really thick hair so nobody really noticed a massive change but clumps would fall out when I was in the shower and I could feel the weight of it was so much lighter.

The last side effect that Topiramate had on me was cognitive difficulties. I only experienced these on the higher doses of Topiramate.

My memory became poor and I struggled with word recall. I would get so embarrassed when I would be speaking to someone and I suddenly couldn’t remember a word. It’s a horrible feeling. You feel so stupid. Migraines already give you brain fog, you don’t need anything else slowing you down.

I also had to stop driving on Topiramate. This took away another part of my independence that migraines hadn’t taken yet. I clearly remember driving back through Richmond Park on my own in the car and feeling so spaced out and weird. It’s a feeling I struggle to put into words but if you have ever been on Topiramate and had cognitive difficulties I’m sure you will be able to relate. I kind of felt like I wasn’t really in the car and everything was just moving around me. I knew from then that I shouldn’t be driving as it wasn’t safe.

Why did you stay on it for so long you may ask?

Two reasons.

1. I was told it was the drug that “keeps on giving”. I thought that when I eventually got to the right dose that I would get relief from my migraines and all would be worthwhile.

2. The fear that it might be worse if I come off it. Although I was convinced Topiramate was not helping my head in any way, I was worried that it might be dampening something or slightly taking the edge off. I wasn’t prepared to come off and it to somehow be worse than it already was.

I finally came off Topiramate in January 2017 after seeing a new neurologist who was concerned about the effects the drug was having or my weight and the rest of my health. He was convinced it wasn’t working for my migraines and it was time to try something else.

I was advised like with most preventatives to come off it very slowly. I was on a high dose and initially weaning your body off such a drug can spike side effects so it’s best to do it gradually.

Within a few months my side effects pretty much vanished. My upset stomach stopped. I became the hungriest girl in the world and slowly put some weight back on. I could drink Diet Coke again and form a coherent sentence all at the same time. My hair also began to thicken back up. Over a year after coming off Topiramate I am finally driving again too!

What happened when I gave up caffeine?

Some claim that caffeine is their ultimate migraine trigger whilst others argue that an espresso and coke is what helps them the most during a migraine.

I never thought caffeine seemed to bring on a migraine for me or be particularly useful during an attack but after reading the Walton centre information sheet on chronic migraines I decided it would be worth a try cutting it out.

This info sheets talks about the importance of eliminating caffeine in patients with chronic migraine as it enables preventative medications to work more effectively.

I thought it had got to be worth a shot!

I gave up all caffeine for 5 months. This included; tea, coffee, fizzy drinks and of course chocolate.

I’m a big tea drinker so initially found the first few weeks very hard, missing my morning cuppa! I soon got into drinking peppermint tea instead which was a great caffeine free alternative for me.

For those who say they could never give up their morning coffee… trust me you can! If you’re in chronic pain day in day out, you will try anything!

Secretly hoping that giving up my favourite tea and chocolate would somehow help my headaches I persevered through several months caffeine free. It definitely gets easier just like most things although sweets are not the same as an Easter egg come Easter Sunday!

I didn’t see any real change in my head after 5 months so decided I had probably given it long enough and would reintroduce caffeine back into my diet.

I did this in the best way I can imagine possible, with a real chocolat chaud (pretty much liquid gold) in the French alps! It was delicious.

Subsequently I have occasionally tried a strong coffee during an attack to see if it can kick it, but with no real success.

Have you tried eliminating caffeine for your migraines? Do you think it’s a trigger, help, or doesn’t make a difference to your migraines?