Video - Migraine is the great time thief. Migraine Awareness Week 2015

Hello beautiful people!

It's that time of year again - MIGRAINE AWARENESS WEEK! Whoop Whoop. The lovely folk over at the brilliant Migraine Trust have asked for people to make short videos describing the impact migraine has on their life.

My attempt at 'vlogging' is below. I had a bad migraine during the night so am in the grips of mega migraine hangover while I'm talking, hence the slightly slow speech (those who know me well know I talk at the super speed of light) and no make up and droopy left eye. Attractive.

I honestly didn't mean this to be depressing. But I do like the fact that I use about ten different metaphors here....thought provoking!

But seriously, don't let the Time Thief win. Don't suffer in silence, demand the help you need and don't stop until you've got the help and support you need -  because only then can you truly learn to live with migraine - not at it's beck and call.

To get involved and post your own video click here for further details. But all you have to do is record a short video (max. 30 seconds) answering the question "What impact does migraine have on you?".  The next step is to post your video to Facebook and/or Twitter using #migraine2015.  Remember to tag - @MigraineTrust on Twitter or The Migraine Trust on Facebook.

Have a happy healthy day! I look forward to seeing all your videos.

Victoria x

My Migraine Journey - Migraine Awareness Week Update

Well hello there. It's been a while.

This time last year for Migraine Awareness Week I did a daily blog challenge. But I've been neglecting this blog - because I've been too busy!!  Do you know how exciting it is to be able to say that? When I started this blog I was in the horror grips of chronic migraine, chronic pain and this blog was my life line to sanity - and to many wonderful migraine buddies.

But slowly, slowly - after a lot of serious hard work, various treatments and explorations....I suddenly realised that my migraines had technically become 'episodic'. I will write in more detail about what's been going on in the last year - I will write Topamax Part II I promise, I will also write about the physical rehab that was key for me.

Today, however, I want to share my - 'My Migraine Journey - It's a marathon not a sprint' that the ever fabulous Migraine Trust have just posted. Do check out what they've been doing this week and the new campaign they've launched. Let's make this year count. Let's help other people go from chronic to episodic and stay there. If I can...surely you can too? I'm not saying it's easy and I'm magically 'cured' (ha!) but I'm living the life I never thought I'd be able to three years ago. x

As part of their 50th anniversary campaign The Migraine Trust
are asking sufferers to fill in 'the head' to show what life is like with migraine, and what it would be like without. 

A healthy audience: Does the number of sufferers equate to income?

Please take 8 minutes of your day to read or watch this report recently released by NFP Synergy, a consultancy for charities. Migraine features heavily and there are some hard home truths.

My cousin, Joe Saxton, led the research and I think I'm right in saying that he was inspired to dig deeper into this subject after I showed him some of the facts and figures provided by The Migraine Trust. i.e there are an estimated 8 million migraine sufferers in the UK, yet migraine is the least publicly funded of all neurological conditions relative to its economic impact.

If there are 8 million migraine sufferers in the UK shouldn't the charity be raising millions to match us? How much is spent, and how much is donated per each of those 8 million? Watch and read the report to find out. It's quite depressing. Why is this happening? What can we do to change this?

Ask if the charity representing your condition is work effectively? Are they doing enough to support you and your condition? What could they be doing differently? How can YOU help them be more efficient.

The report suggest 6 actions points for charities to consider:

• Identify your case for support - crystallise your case, why should people give money, what can you do/offer?
• Identify key audiences - is income likely to come from sufferers, their friends and family or employers?
• Work out the mechanisms for support - the way someone supports a charity should tie in with the above two points. 
• Copy other charities - look at what successful charities are doing and adapt those ideas.
• Raise your profile - it shouldn't have to cost money to raise the profile of a condition, get journalists interested, use social media - it's free!
• Be ambitious - trustees and staff need to be hungry for growth and change, without that, nothing is possible. 

Is your charity doing all this? Challenge them and yourself. 

New Treatment Breakthrough?

I'm sure by now everyone is aware of the 'new injection' and 'new medication'  headlines that broke this past wednesday. I was actually asked to speak on BBC Radio 4 about the impact migraine has on my life but, ironically, was in the midst of a major 'migraine hangover' so didn't think I'd be any use.

So what's all the fuss about?
Proff Peter Goadsby and some other clever people have been doing some clever stuff that you can read about here:
http://privatehealthnews.co.uk/blog/new-medication-for-migraine/

and here:

http://www.huffingtonpost.co.uk/2014/04/23/new-drug-migraine-prevention_n_5198514.html

and here:

http://thechart.blogs.cnn.com/2014/04/22/new-migraine-treatments-show-promise/

So what's next?
I'm hoping to get an interview with Goadsby himself so I'll let you know when I know.

But, I'm pretty darned excited. This is the first such treatment breakthrough for years and years (I think) - and it just goes to show that we need more funding and more research to keep stuff like this happening.

Happy Friday all!

High Heels and Migraines. Manolo Blahnik we worship.

Oh ye shoe gods….. I always knew there was a reason I was especially riveted by the lustrous beauty of Manolo Blahnik shoes. It turns out Mr Manolo Blahnik, himself, gets migraines.

Once again, this provides further credence to my theory that migraineurs are creative geniuses whose brains are just bursting with, well, genius.

In a recent interview with the Guardian Mr Manolo revealed that:

"Migraines have been with me all my life. They're a part of who I am. I inherited them from my father, and I've made my peace with them."

Picture taken from Guardian Article 

I now fell a great sense of duty to immediately go forth to Westfields (or Sloane Street) to spend a 12 month pay check on a precious pair of Manolo's - simply to support a fellow migraineur. In fact, I wonder if migraineurs get a discount? 

'Have you ever'…..tried the star treck Cefaly device!

Recently the Cefaly - Star Treck looking - device got FDA approval in the USA. You can read more about it here. Last year news of this funny look gadget reached the national news and I collected some of the reviews here.

The fabulous Kerry has written a review about her experiences with the device. Several of you, dear readers, have asked if I have ever tried the device. I have not, but know others who have, whom I'm hoping will share their experiences below.

So - have you ever tried the Cefaly device?

If you have: did it work, how long did it work for, where there any adverse side effects, would you recommend it to others? All these questions!!

Have you ever….tried Medical Marijuana for migraines? New series of Q&A from YOU!

Starting right this second, every Friday from hence-forth, shall be the:  'Have you ever?' series.

Each Friday I'll post a question from a reader of this blog and hope that you, other dear readers, will answer and help out as best you can! If you want to pose a question, or ask this migraine community about anything from the best ice gel packs, to helpful apps, to how to 'come out' to your boss as a migraineur, simply send me an email at victoria@migrainemonologues.com.

1st question: Have you ever….. tried marijuana to treat migraines? 

 I 've suffered migraine since I was 12. I'm 28 now and the last 2 years have been very difficult, going to work feeling like sh*$ is horrible, I'd been absent many times because of it. I'm from Mexico, and it's very difficult to find good neurologists or affordable medication here in Playa del Carmen. Getting Botox is around 500usd. 

After many years of trying different pain killers, my stomach is a mess, I've become very anxious and my family and boyfriend have to deal with me and my bad days,  I have been researching about the use of Marihuana to treat migraine.

 I would love to read if you or someone in your blog have experienced with this and your thoughts about it.

Thank you so much reader 'N' for the above question. I know many of us will be able to relate to your experiences. 

So - over to you dear readers. Please leave your responses to the questions in the comments section below.