Wednesday, 1 April 2020

♥These are a few of my favourite things ♥

I wanted to start a little blog series where I share my favourite things with you every so often. This will be everything from migraine/health related products, to what shows I have been loving, food faves and any other random bits and bobs I have been obsessed with.

Since we are only allowed out for one walk a day at the moment, I thought it would be a great time to try and get back into using the bike at home. The recumbent bike was suggested to me by my cardiologist to help with POTs, by building up my leg muscles. I like to sit back in a comfy chair and watch Netflix whilst I pedal.

I find that because my body is not fighting gravity and its fairly low impact, that it doesn’t seem to trigger my head off in the same way most exercise does. I have the Mira Fit bike but there are lots of different models you can choose from online. Try and get one which is fairly heavy so it doesn’t move around too much when you pedal. The Mira Fit one has a little display panel showing you your speed, distance, time, calories burned etc.

Native deodrant (aluminium free)
I’ve been looking for a new deodorant for a while as I wanted to switch to one which was aluminium free. I’ve tried a few different ones in the past but never found them very good and always ended up going back to my trusty dove roll on.

I saw a few “influencers” (bleugh I still hate that word) talking about Native online and ordered some to try. They aren’t cheap and unfortunately I had to pay extra customs charges but the deodorant is incredible. It’s a creamy stick and feels lovely to apply. It’s aluminium and paraben free and you can choose from so many different scents. I’m currently loving the coconut and vanilla scent. At the end of the day I still smell of coconut! If you want to try it for yourself, you can get a free mini deodorant with your first order using this link

I’m wayyyy late to the party on this one but it’s amazing when you find a great podcast and have about a year’s worth of episodes to binge on. It’s by Chris and Rosie Ramsey and is a hilarious chat between husband and wife about day to day life, relationships and their grievances. To anyone who already listens and has a clue what I’m on about... everytime I hear the babagabagababaga I always go babagabagababaGANOUSH. You’re welcome.

I’m not sure if I’m sad or relieved that I didn’t discover this pot of joy sooner. I’ve loved the lotus biscoff biscuits for years but for some reason never tried the spread. Wow. It’s delicious! I haven’t found anything I particularly love to eat it with yet (suggestions welcome). I like it best straight off the spoon! Big thanks to my friend Sarah for showing me how it’s done.

This stuff smells incredible! I don’t think I’ve ever rationed myself with a shower gel before but I’ve been trying so hard not to use this all up but finally it’s gone. It lathers up well like most shower gels to be honest but the scent is SO fresh. I can’t wait to try the shampoo and conditioner next! It contains no SLS or parabens and is vegan and cruelty free.

What are you loving at the moment?

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Friday, 6 March 2020

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.

Thursday, 6 February 2020

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 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.
  • 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.


Wednesday, 1 January 2020

20 Migraine tips for 2020

1.     See a headache specialist. Not all doctors are experts in migraine, in fact most aren't.
2.     Make sure you have a clear acute plan with your doctor (what to do/take when you get a migraine).
3.     Sleep. Keep things regular. Go to bed at the same time each night and wake up at the same time in the morning. Avoid that weekend migraine by not having a long lie in. The Migraine brain likes routine.
4.     Drink enough water. I love to use my Chilly's water bottle
5.     Keep a headache diary. This makes life so much easier for both you and your doctor. I record mine in my bullet journal.
6.     If you are experiencing regular migraine attacks, discuss preventative options with your doctor.
7.     Exercise! It might feel like the last thing you fancy doing but regular exercise has been shown to be as effective as some preventative medication. 
8.     Educate those around you. Migraine is often invisible and difficult for people to comprehend the severity and disabling nature of attacks. Share what migraine looks like for you with your friends, family and colleagues.
9.     Ask for the adjustments you need. Whether this is at work or at a friend's house, if you need the lights off or the radio down... ask!
10.  Keep a little pouch/bag with you with your rescue medication in so it's easily accessible wherever you are.
11.  Consider migraine supplements. The Migraine Trust has an excellent recourse outlining the different supplements for Migraine and the clinical trials outlining their efficacy. I love Bio Kult Migrea and Dolovent.
12.  Don't skip meals. Remember what I said about sleep. The Migraine brain likes routine. Don't throw it off by skipping lunch.
13.  Tell your doctor if one of your medications isn't working. Doctors are not mind readers. They can't help unless they know what's going on.
14.  Stick with preventatives. Let your doctor know about any side effects but try and stick with a preventative for a few months to give it a fair trial. It can sometimes take a bit of time to get to the optimal dose. Be patient.
15.  Ask for help. If you're struggling with your mental health as a result of your migraines, let your doctor know. You don't have to suffer in silence.
16.  Stress management. Stress can be a big trigger for many patients, so finding ways to avoid it or manage it, can be hugely beneficial for managing your migraine.
17.  Don't bury your head in the sand. If your migraines are becoming more severe/frequent, seek the help of a headache specialist doctor. Don't try and self-medicate at home, as this can make things worse.
18.  Be open to new treatments.
19.  Look online or ask your doctor about any research trials you might be able to participate in. You might be able to try a new treatment that isn't available to the general population yet.
20.  Listen to your body! Sounds simple but being able to pick up on those early warning signs that an attack is incoming, or knowing when to cancel something because you need to rest is so important.

Thursday, 14 June 2018

The Migraine World Summit Summary: Day 7

Day 7

Lars Edvinsson: Treatment spotlight: Anti CGRP treatments for migraine

How does CGRP work in the trigeminal system?

1990- CGRP discovered – only single molecule released during a migraine attack. (Himself and Prof Goadsby).

Monoclonal antibodies – way to produce something to block the CGRP.

1.Go to receptor and block receptor itself
2. Pacman style inactivates CGRP

CGRP – stored in the trigeminal ganglion – activated and then released into the head.

The monoclonal antibodies DON’T affect the release of CGRP. They either;
1.Block the receptor
2. Mop it up

Currently pending approval FDA & NICE.
*First CGRP antibody has actually been FDA approved since the summit (May 2018)

Clinical trials
CGRP antibody or CGRP antibody receptor
-        Fairly similar in effect
-        Side effects similar to placebo
-        Important to note that this is NOT a cure.

There have been some “super responders” – complete remission as a result of CGRP
treatment. These are a sub population but it is possible!

What can average patient expect?
-        No side effects
-        Cost is an issue (currently very expensive)
-        Blessing for those it does work for
-        Hard to predict who will have a really good outcome from it (very early stages)

Safe & effective is main priority at this stage.

Molecule for acute treatment coming soon too – hiccup along the way with that though (something bothered the liver).
Hopefully we will end up with; CGRP receptor blocker acute g-pant
Triptans block the release of CGRP so the combination of the two could work well together. CGRP won’t have the same side effect of triptans though.

Who is a good candidate for CGRP?
-        No particular group
-        No long-term results yet so hard to say
-        Pregnant woman/ children? Biology of CGRP means it should in theory be fine but need to learn more

*Interesting to note during the 2nd & 3rd trimester migraine disappears (level of CGRP elevated). Desensitizing CGRP. Then migraines back when they have the baby and CGRP normal.

Big pharmaceuticals have CGRP in the pipeline.

G-pants – oral – acute – separate class of drug
Antibodies – injection once a month – preventative- injection patients take themselves (subcutaneous injection)

CGRP receptor and CGRP receptor antibodies;
-        Phase 3 trials at last stage
-        Phase 4, further studies ongoing

Day 7

Richard Lipton: Treatment spotlight, Triptans & Rebound headaches

Medication overuse headache (MOH)- Secondary headache disorder like brain tumour etc.
Rebound headache/MOH basically the same thing.

Medications used to treat headache – when used too much can cause MOH headache disorder.

MO: More meds (opioids and narcotics etc)- worse head gets over time.
MOH: Not meant to be judgmental. Just another factor causing headaches. Not addiction! Can be very difficult if in pattern of MOH.

How common?
-        MO: 1-2% of general population
-        About as common as epilepsy

Do I have it?
-        History/pattern (infrequent to frequent headaches)
-        Codeine for example (end of dosing interval headaches, pain comes back just before next dose)
-        Headache itself not being treated
-        Use of caffeine containing products
-        Profile: accelerating headache (more meds they take, over time, the worse the headache becomes.
-    Worse in morning and sometimes weekends (people have slept through usual dose of morning medication)

What medications are involved?
-        Triptans although hard to get hold of enough in a month
-        Occasionally with anti-inflammatories (less likely)
-        Opioids/barbiturates most troublesome

Acute medication should be taken 2-3 days MAX per week

Help – I take 5 days a week – what can I do?
-        Avoid triggers
-        Find a preventative that works
-        Take acute medication early but don’t take too much (really tricky in practice to do this) – much easier to achieve if you can reduce overall headache frequency with a preventative.

*Issue of people desperately trying to avoid MOH – end up delaying acute meds and then
take them too late and they don’t work.

Preventative meds – generally don’t cause MOH (sometimes a worsening when people come off
these drugs for a brief period).

What if I have more than one pain condition?
-        Research shows that pain disorders travel together
-        People who have pain in multiple bodily areas are more likely to suffer from headache and these people are more likely to have episodic migraine that turns to chronic
-        Preventatives
-        Physio
-        CBT
-        Tens machine
-        Antidepressants
-        Restrict acute number of days taking meds
-        Neuromodulation (2 FDA approved) can be good option for people with MOH to use on a daily basis but also for acute attacks instead of pain medication.

Wednesday, 13 June 2018

The Migraine World Summit Summary: Day 6

Day 6

Robert Cowan: Best natural, affordable and free treatments

One of the biggest problems with western medicine is the time pressure for consultations.

Behavioural & lifestyle changes are so important. Patients who follow this do the best.

Sleep – getting up at the same time each day even at the weekends (no lie ins!)

Diet – stress of diet can make headaches worse. Schedule for food and meal times and be consistent (let brain know when food is coming).

Exercise – Helps to raise endorphins so pain of 8 feels more like a 5.

These three components work best together;
1.Preventative meds
2. Acute meds
3. Anti-migraine lifestyle

There is no mention of lifestyle changes in the current guideline treatments for migraine. Why? Western medicine – quick fix.

Partnership between patient and doctor is key. You can’t just take a pill and expect to feel better. Work with each other.

He acknowledges it is VERY HARD for patients with chronic migraine!

Have a vision of wat you would like life to be about. See it and visualise it.

Tendency to overdo it on good days – enjoy good days but take it easy and don’t overdo it otherwise one step forward, two steps back. Progress NOT Perfection!

Important to make informed decisions on what you’re able to do or not do – what will be worth it?

Natural treatments – Roberts thoughts

1. Acupuncture: Culturally bound. Amazing results for some. Make sure you go to someone with training in traditional Chinese medicine.
2. Biofeedback: Big fan! Good evidence for it. Uses a technique to get feedback about all sorts of things we are not conscious of. Learn to relax and calm down the nervous system.
3. Mindfulness training: Live in the present. Don’t worry about the future or what has been. Good, well controlled studies of efficacy for migraine. Meditation – clearing mind. Mindfulness – focussing on the now.
4. Daith piercing: sceptical. Probably works as a placebo. No hard science.
5. FL-41 tinted lenses: Certain wavelengths of light can be more painful for some people. Study found can actually make worse when glasses worn all the time. Can become more light sensitive all the time. Can be very soothing to wear at times.
6. Food allergy and sensitivity test: weak data and no clear triggers. More important the time and frequency you eat. Probably not worth your time, pain and money. Cutting out gluten – FAD.
7. Ketogenic diet: worse than a migraine itself HA! Mixed data for it. Originated by treating epilepsy. Wouldn’t recommend.
8. 5:2 diet: No evidence for migraine. Migraineurs don’t do well with disruption to routine.
9. Vegan diet: If healthy and feel better then great. Epiphenomenon – more energy etc but not migraine specific.

Find a diet you are comfortable with and be consistent!

Migraine: Either too sensitive to external stimuli or internal stimuli (e.g. hormones).

1. Ginger, turmeric and saffron (potent anti-inflammatory) not many great western medicine studies.
2. Ice packs for acute attacks? YES. Ice was the first anaesthetic used.
4. Epsom salt baths – anecdotal studies
5. Magnesium, riboflavin, coq10 and calcium (good data for migraine)
6. Probiotics – good for health. No data for migraine.

Neck tension & Migraine
1. Chiropractors: in clinic they see the worst outcomes of chiropractic care (paraplegic). Very wary!
2. Physical therapists & osteopaths