One big frustration in the US (and many countries around the world!) is knowing that help may be available from government programs or from insurance companies, but not knowing how to access that help.
Is it available in my case? Who do I call? Which forms do I fill out? Am I wasting my time? Or am I wasting money because of something I don’t know?
The Migraine CareLine is a resource designed to help you navigate through these questions.
The Migraine CareLine is a service of the Patient Advocate Foundation (PAF). PAF was founded in 1996 by Nancy Davenport-Ennis. She was inspired after a friend passed away from cancer. She had watched her friend fight insurance companies and cancer a the same time, and wanted to find a way to help patients in these kinds of situations.
Today, the PAF helps patients not only with life threatening diseases, but also chronic and disabling conditions, throughout the USA.
If you fit one of those categories, you can go directly to the main PAF website here to explore. However, if you have migraine specifically, you can visit the Migraine CareLine page. You can call directly, or you can fill out a form to get started. All services are provided free of charge.
This may be a good option to investigate if you live in the US, especially if you’re having trouble getting the treatments and resources that you feel should be available.
We would be interested to hear your experienced with the PAF – please leave a comment below. Also, if you’re not in the USA but you’re aware of similar organizations in your country, let us know!
If you like to stay up to date with the latest useful information in the world of headache and migraine research – well, that means you’re a regular guest at Headache and Migraine News, of course! 😀 But aside from that, you’re probably starting to get excited about the 2020 Migraine World Summit!
Those of us who attend the free summit are often among the first to learn about new treatments, and to hear the best tips for living life with migraine and fighting back against headache pain. So here’s a quick look at some of what we can expect at this year’s summit!
(First – be sure to get your free tickets for the online summit, even if you’re not sure how many of the sessions you’ll be able to watch or listen to (just click Register Now, or log in if you’re a previous attender). Registering early helps those in charge gauge interest and also shows researchers and policy makers that we want the fight against migraine to be a priority!)
The Migraine World Summit Online
As usual, there will be several days of free seminars. The dates to mark on your calendar are the 18th-26th of March.
Following last year’s format, each day will have a theme, which is useful for those wanting to set aside time to get expert advice on a certain topic. For example, Day 6 (23 March) focuses on alternative treatments. Actually, let’s just take a quick look at what we can expect…
18 March “Real Warriors” — meet some real people who are fighting the battle against cluster, migraine and headache, such as Olympic gold medalist Amanda Beard and Bob Wold, founder of Clusterbusters.
19 March “Causes & Diagnosis” — Why do most doctors get your diagnosis wrong? How does genetics fit in? What about concussion, or emotional trauma?
20 March “Types” — Two special focuses here – chronic types of migraine, and also menstrual migraine. These four presenters are experts in their fields who have real contact with migraine patients who are looking for solutions.
21 March “Symptoms” — Headache pain is terrible, but there are many other disabling symptoms that we need to deal with. It’s time to fight back against nausea, mood disorders, facial pain – even memory loss. What’s going on, and how do we solve it?
22 March “Triggers” — This is actually a rapidly changing field of knowledge. What we thought we knew about triggers years ago is being challenged today. So what do you need to know about weather related migraine, light sensitivity, and dietary factors? Snuck into this day is a key discussion about the pros and cons of the new CGRP medications.
23 March “Alternative Treatments” — Are any supplements still worth the investment? What about CDB oil? How can I navigate the confusing information about nutrition?
24 March “Treatments” — Here’s where we look at the latest and upcoming treatments (including CGRP related medications). And should I be looking at a multi-pronged approach to treatment? When is surgery a viable option?
25 March “Taking Control” — How can I approach migraine and the workplace? What the best tips for 2020 to get access to the best treatments and insurance coverage? How can I deal with psychological challenges that may come with migraine?
26 March (presumably these will be the wrap-up sessions)
Migraine World Summit OnStage – 11 March 2020
If you’re not excited already, if you’re in the New York City area you have yet another reason to get excited. A live and in-person Migraine World Summit event!
A packed-out live event will be another way to show policy makers that migraine, cluster and headache research is a priority. So be sure to show your support!
As noted above, this event takes place a week before the summit begins.
Light refreshments will be served at the welcome reception
The event will feature comedian Whitney Cummings (author of I’m Fine…And Other Lies), Olympic medalist Amanda Beard (author of In the Water They Can’t See You Cry: A Memoir) and migraine and headache experts Dr. Dawn Buse, Dr. Lawrence C. Newman and Dr. Amaal Starling. In fact, there will even be an audience Q&A, so prepare your questions!
So what’s next?
If you’re in the New York area, be sure to get your tickets (you do need tickets in advance for this one because space is limited) right here.
Wherever you are in the world, register for free for the online Migraine World Summit here. Let’s make this the biggest summit ever, and let the world know that we need solutions and support to stamp out migraine and headache disorders.
Healthline has recently come out with a new app. Although similar to other apps that the company has developed, this app is quite different than most of the migraine apps you’ve seen before.
Healthline Media, Inc. is a popular health website, owned by marketing company Red Ventures. It was launched in 2006 (based on an earlier website), and has grown significantly in the last few years. You can visit Healthline’s main site here to get a feel for it.
Healthline has launched a number of apps which are designed partly to promote its content, but also to bring together people dealing with certain health conditions. In 2016, they launched MS Buddy, followed by Breast Cancer Healthline and IBD Healthline. The latest app is Migraine Healthline.
The purpose of Healthline’s app is not to track symptoms and diagnose, but to promote Healthline content and link you with other people who are dealing with migraine, and so to provide support. Think of it as a way to find people with similar migraine “interests” – matching you with a group of people who are on a similar journey.
When you open the app, you’ll start by answering a few questions. They are basic, but they’re important because they will be used to match you with other users. (If you’re interested in privacy concerns, you can find all the information that applies to the app here – Privacy Policy.)
After you answer the questions, you’ll find yourself on a page that looks very much like a migraine Facebook, with posts by users with replies, as well as posts from Healthline articles. You can navigate to groups, to talk about specific topics (navigating healthcare, lifestyle, medication and treatments, etc.). You can meet members (some of whom are also promoting their own sites), send and receive messages, and get matched up with specific people based on your symptoms and interests.
The app is very new, so the action is a little limited at this point, although it already has a good number of users. But based on the popularity of Healthline and its other apps, that should change over the next few months.
As you can guess, there are pros and cons to this kind of an app. But the most obvious strength is finding other people to connect with. So many people feel like they have no one to talk to about the migraine and headache challenges that they’re facing – this is one way to connect with others. The best way? Probably not. But another way.
Have you been using Migraine Healthline? What’s your opinion? How could it be better? How has it helped you? Let us know!
A unique lamp has been developed specifically for migraine – using pure green light.
Back in 2017 we discussed some research on coloured light (see Migraines and Blue Light – Or Maybe Green Light…). Are there certain parts of the spectrum which make migraine symptoms worse – or better?
Of course, any light can cause problems when it comes to migraine. But if you need some light, what colour is best?
Blue light is a common culprit – and you can read the article above to learn about some ways to minimize or block blue light at the right time (blue light is actually good for you – most people won’t want to block all of it out all of the time!). Red light also seems to bother some people, although we tend to have more “excess” blue light than red.
But some studies, as well as anecdotal evidence, point to the fact that green light may even lessen some migraine symptoms. So the best advice today seems to be – if you need a little light during a migraine attack, make it as green as possible!
And so, the Allay Lamp was created, which emits a completely pure green (which a tinted bulb can’t do). It was designed specifically for migraine sufferers based on research from the Harvard Medical School, and so has some very useful features:
Power/brightness can easily be controlled
An adjustable shade can direct the light where you want it, and even shield you from direct light
Fully portable – charges via USB and then lasts up to 32 hours!
Even has a “regular light” mode
It’s obvious that some serious thinking has gone into this light.
This is obviously not a cheap lamp, but it does come with a 40 day guarantee, so you should be able to give it a decent try before really committing.
So check it out here on the official website: Allay Lamp
(Obviously the author of this post finds this lamp quite interesting, and this is starting to sound like a sales pitch, so it’s worth noting that he’s not receiving any commission whatsoever. He’s just really impressed with the work that’s been put into this lamp, and wants to let you know about it. 🙂 )
Dr. Alexander Mauskop from the New York Headache Clinic wrote about this lamp and some of the research behind it as well – check out his post here: Light therapy with Allay lamp
Last time we talked about our overall plan for quitting sugar – which actually includes quitting sweeteners as well. I didn’t go deeply into the science of all this – you can find that in other posts and other places on the web. Our purpose in these articles is to talk about strategy.
Candy or almonds or neither? Time to get specific…
We have talked a little about preparing to quit sugar and sweeteners, and preparation is very important if you want to succeed. And you can’t just think about “cutting” things – you have to think about the big picture of what you’ll eat.
This is where things get tricky, because a lot of the advice you’ll see online is based on goals that are entirely different than ours. What is our purpose? To fight migraine, of course.
So when you’re looking at various food lifestyles online (forget about diets – we want to change the way we eat), you’ll see a lot of great ideas for “losing weight” (often very temporary solutions, as statistics show). You might want to lose weight, but that’s not our goal.
Or, and this is a classic, people buy into a different type of “diet” and then try to find ways of eating exactly what they did before. That’s why, when you look up recipes for a popular diet, you instantly find brownies, cheesecake, banana bread and chocolate chip cookies. (I still get a chuckle at the number of gluten free cookbooks that feature things like brownies on the cover! — gluten free? Yes. A healthier food lifestyle? Maybe not!)
So our purpose is to fight migraine, and we know that messing with sugars and sweeteners is a huge factor for many people. And that includes refined flours.
This post will get too complicated if I tell you exactly what to eat. You already have your ideas about what is healthy and what is not, and the research is continually changing our ideas about what we should be eating. But you do want to avoid the classic mistake – cutting out sugar, and then filling up on sweeteners and smoothies and juices and “sugar free” breads. FAIL.
So do your research, make a plan for your new migraine-fighting food lifestyle, and download a few recipes. For me personally, not having to think too much about breakfast is important, so one of my first priorities is to know exactly what I’m going to eat/drink during those first hours of the morning.
Collect some recipes ahead of time. Consider how you will “switch out” those quick convenient meals/snacks for something that fits your new healthier way of eating.
I will make one recommendation. A lot of migraine patients are using The Migraine Miracle by Dr. Josh Turknett and Jenny Turknett. This book is written by a neurologist and migraineur (who has found tremendous relief), as as the longer title shows, it fits perfectly with our strategy – “A Sugar-Free, Gluten-Free, Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good”
This particular food lifestyle is a kind of paleo diet, but it’s specifically designed for migraine patients, with an acute awareness of triggers and what current research is telling us about migraine. It also explains some of the reasons why we’ll want to quite sweeteners as well as sugars, at least for a few months (as we discussed in the first article).
The book does have recipes, and they’re excellent, though some are quite time consuming. If you like what you’re seeing in the book, you can certainly go out and find your own recipes for free that follow the philosophy of the book. Also, Dr. Turknett has a subscription based service which will provide you with an avalanche of excellent recipes – both easy and complex, dairy free or not, snacks and main courses – worth looking into if you would like to take this path. (And the recipes come from Jenny, who obviously knows exactly what she’s doing!)
(The subscription also takes you through a lot more of the philosophy behind this type of migraine-fighting eating, which will be tremendously helpful if you want to be successful long term.)
So today’s goal – continue to prepare, by thinking specifically about what style of eating is best for you, and what exactly you’re going to eat. Many migraine patients are finding major success by getting serious about what they eat. But if you start without being ready, you’ll only be planning to fail.
If you’ve found success with a particular sugar-free style of eating, let me know! I would love to hear your story.
