Resources

10 May 2018

The Migraine Trust Toolkits: Brilliant!

Earlier this year the Migraine Trust came out with new editions of their migraine toolkits. And you need to check them out.

One of the toolkits from the Migraine Trust These toolkits have been available for a while (we talked about their “employment” kit back in 2012), but they are constantly being updated. Currently there are seven topics:

Information Service (general migraine information)
Advocacy Service (general information about finding help)
Help accessing healthcare (just what it sounds like)
Help at work (managing work when you have migraine)
Help in school (for children and young people)
Help in further and higher education (yes, you can do it in spite of migraine!)
Accessing welfare benefits (the legal stuff)

Now, I should mention right away that the Migraine Trust is based in the UK, so the legal aspect will have more relevance to people specifically there.

But if you’re outside of the UK, don’t let that scare you away! There is a lot of excellent information and tips for you, wherever you are in the world. Even much of the legal stuff may be helpful to you.

Some of the topics simply have a simple page of information and links. Others have downloadable pdf files, which are packed with practical information.

So if one of the topics up there fits you, go here: the Migraine Trust toolkits

All the above topics are instantly available from this page.

3 May 2018

Explore a Remarkable “Migraine Art” Website

James News, Resources 0

We’ve talked a lot about migraine art. In fact, you can explore migraine art and add your own artwork right here. Just scroll down to the bottom of the page and check out what others have submitted.

And, of course, we’ve talked about the beautiful and haunting Migraine Expressions: A Creative Journey Through Life With Migraine and the classic and more technical Migraine Art: The Migraine Experience from Within.

Migraine art gives us a way to express our symptoms to others, but also a way to understand the symptoms of others. The strange shapes and patterns of visual migraine aura have been a constant topic of conversation here, but that’s only the tip of the iceberg.

That’s why I’m excited to share with you The Migraine Art Collection, and entire website dedicated to migraine art. The art comes from the collection of the Migraine Action Association, with the help of migraine historian Katherine Foxhall and the University of Leicester.

The brilliant thing about this collection is how you can search it. For example, filter by symptom – shaking? throbbing? nausea?

Or filter the art by visual aura elements. Do you see a halo effect? dots? zig zags? spirals?

You can even filter by themes such as hope, embarrassment, or “not again”.

The Migraine Art Collection is most certainly something you’ll want to spend some time exploring, and something you’ll want to share with your friends. And while you’re at it, why not share this post too? 🙂

26 March 2018

Fight Migraine and Headache – Time to Fill Your Toolbox

James News, Resources 0

How many days did you lose to migraine last year? How much productivity was lost? Time with your family and friends?

Many of us would rather not think about it – and there are times to not think about it. But if you’re going to fight back, if you’re going to reclaim some of those days next year, you have to arm yourself with knowledge and resources – tools in your toolbox.

So if there is one thing – just one – that I would recommend you do this year … well, aside from being part of our community here, of course! … it’s that you get involved in The Migraine World Summit.

The Migraine World Summit is becoming arguably THE migraine fighting event of the year. If you’ve been involved before, I probably don’t need to convince you (although the summit is going to be improved in several ways this year – more on that in a moment).

The summit is a virtual and international gathering of experts, doctors, and advocates, along with people who are personally fighting migraine, and their friends and family. There are two major goals…

The Big Shout – “Take Migraine Seriously!”

The first purpose of the Migraine World Summit is to shout out to the world that migraine is a serious disease that must be taken seriously. We’ve talked about this before:

When tens of thousands – or millions – of people are involved in an international summit on migraine, what does that tell the world? What does that tell governments and policy-makers?

You can very easily make a statement – simply get your free ticket to the summit (did I mention it’s all free?) – AND encourage your friends and families to get their tickets as well. No one is obligated to watch all of the workshops – just getting your ticket tells the world that you feel this is an important issue. Point your friends and family to this post – they can get free tickets here.

Fill Your Toolbox

The World Migraine Summit may be the most condensed, news-you-can-use, up-to-date set of resources you can get to fight migraine.

And that brings us to some of the changes for this year. The resources from the summit have always been incredibly useful. But the days have been very full (it’s hard to watch so many interviews in a day, especially for those of us actually dealing with the disease), and sometimes the interviews have been quite long.

So this year, the actual summit will be a little longer, but the days will be lighter, and the interviews will be shorter and more to the point.

Which means you can tune in and instantly get “news you can use”. Some topics this year:

Did my doctor prescribe a medication that’s making my pain worse?

How might migraine symptoms change as I grow older?

How can I thrive in my career when I have migraine?

How can I tell if my headache is doing permanent damage, or if it could even be fatal?

Should I apply for disability? How?

What if medications aren’t helping me?

I’ll tell you more about what’s coming up, and some of the changes that are being made this year, as we get closer to the date.

Meanwhile, encourage your family and friends to get their tickets right away, even if they’re not sure how many sessions they will be able to watch. That way, the organizers of the summit can make sure they have all the technology ready to accommodate you.

Here’s the information you need:

World Migraine Summit 2018
18-26 April 2018
Online & Free
Free Tickets Here

29 January 2018

Coaches, Parents: Know the Sports Related Concussion Global Recommendations

James Information, Resources 0

Parents, coaches – and, of course, athletes – are you aware of the global recommendations for treatment and prevention of concussion? You should, because new information is available all the time.

We’ve talked quite a bit about sport-related concussion (SRC) over the past few years. That’s because it has only been over the past few years that serious study has really started to gain momentum in this field. And we still have a lot to learn.

In 2001, experts from around the world gathered for the first ever International Conference on Concussion in Sport in Vienna, Austria. It was organized by medical branches of the Olympic Committee, the International Ice Hockey Federation, and the Federation Internationale de Football Association (FIFA).

Since then there have been four more conferences. Each conference has led to a document with official recommendations, the most recent published this past April.

It can be somewhat daunting to read the whole article, though I would recommend it (full article: Consensus statement on concussion in sport—the 5th international conference on concussion in sport). But here are a few highlights that will be of special interest to our community here:

What is Sport Related Concussion? “…SRC is often defined as representing the immediate and transient symptoms of traumatic brain injury (TBI).” Terms and definitions here are not precise and hopefully will be improved upon someday. But basically, SRC, a traumatic brain injury, is caused by a blow to the body, resulting in trauma to the head. The patient will usually experience temporary neurological symptoms (you may notice that the person is slow to get up, perhaps disoriented, and may have balance issues. Headache is also an early indication).
Doctors are encouraged to use tools to evaluate the patient, such as the Concussion Recognition Tool v.5 or, for children, the Child Sport Concussion Assessment Tool v.5. (It would be helpful if someone at the sporting event, doctor or not, was familiar with these tools.)
Players with signs of SRC should be removed from the game immediately, and should be encouraged to rest for at least 24-48 hours (more on this in a moment). They should see a doctor ASAP.
Rest-Rehabilitation: Just how to treat SRC has been a key area of research in recent years. The recommendation is that the patient rest for 24-48 hours (that’s full rest – no school, no homework, etc). Afterwards they gradually, step by step, go back to regular activities. This will take at least several days, and if any symptoms return, the patient should slow down again. See the document itself for specific recommendations for children, adolescents, and adults.
The patient should not go back to their sport until symptoms are gone and they are no longer taking any “painkillers”.
Usually symptoms are resolved and the person has returned to normal activities within a month (often less time). But there are times when symptoms continue, for various reasons, and treatment needs to continue.
Prevention: Some types of prevention are difficult to measure (for example, you can’t measure the value of helmets vs. no helmets in professional hockey, because everyone must wear a helmet). However, there is good evidence that body checking should be avoided under the age of 13 in hockey – and perhaps in older ages as well.
Migraine and Depression: It may be unclear whether or not pre-existing migraine slows your recovery, but it does seem that developing migraine symptoms or depression after a SRC are indicators that recovery will take longer than a month – perhaps significantly longer. Doctors and patients, as well as parents/friends should watch for potentially related symptoms, which may lead to different treatments.

More study is underway to see if certain exercises and special training can help avoid SRC – see for example this current clinical trial for Primary Prevention of Concussion in Youth Ice Hockey Players.

This is just a brief summary of some of the highlights in my own words. I would encourage parents and coaches to be familiar at least with the tools recommended above. They also need to be aware that anyone with suspected concussion should see a doctor right away, and will probably be out of the game for a few days or even a few weeks.

The high pressure of sport makes this a significant challenge. But if you’re aware of the years of suffering that patients have endured due to ongoing symptoms such as headache that started with a SRC, as I am, surely you would take the issue very seriously.

Related information:

You also might be interested in the movie Concussion, starring Will Smith, which shows some of the challenges of this issue related to NFL football.

22 January 2018

Wait – Why Isn’t This Cluster Headache Treatment Prescribed More Often?

James Information, Resources, Treatments 0

Cluster headache has the very appropriate name “suicide headache”. It’s rare enough that we haven’t studied it nearly enough, and yet common enough to affect our communities in a big way, and individuals in a huge way.

With a shortage of good treatments, you would think that doctors would prescribe whatever will work that’s not a huge risk. So why is one treatment often overlooked?

Oxygen Therapy for Cluster Headache That treatment is oxygen therapy.

Oxygen therapy for headache was first mentioned in literature almost 80 years ago, so this is not a new therapy. It’s also considered to be a fairly safe, stable option. As the Migraine Trust says:

Oxygen is one of the safest ways to treat cluster headache. You need to breathe the oxygen in at a rate of between 7 and 12 litres per minute. The treatment usually starts to work within 15 to 20 minute. For some people the attack is delayed rather than stopped altogether. [source]

An article from the National Headache Foundation last month lamented the fact that oxygen therapy is still underutilized for cluster headache:

Despite treatment guidelines recommending the use of oxygen for the acute therapy of cluster headache, oxygen remains underutilized. A recent study looking at the cost of oxygen for cluster headache found the reason for its lack of use may be because of poor physician awareness of the treatment, as well as the lack of understanding for how to write and fill a prescription for high-flow oxygen.

According to a recent study, the price of oxygen therapy varies quite a bit, but averages out at around $1000 per year in the USA. Most private insurance plans will cover it. So – why not make use of it?

If you have cluster and are looking for solutions, you can help your doctor get more information about prescribing oxygen therapy. In the USA, click the link at the bottom of this article to email the National Headache Foundation for information.

Prescription information for the UK can be found here.

In other countries, talk with your local specialist or call a headache or pain clinic.

For more information, check the Michigan Headache & Neurological Institute.