Resources

15 September 2009

You’re not missing Invisible Chronic Illness Awareness Week, are You?

… I hope not! It’s on right now, right until the 20th (Sunday), so take advantage of it live if you can! There are opportunities to call in, there are prizes, and other ways to participate.

There are lots of online seminars (that’s right, you don’t even have to leave home!), with lots of down-to-earth topics to get you thinking and give you resources. Those will be going on all week until Friday. For example, what if you have chronic migraine, and you have a crisis situation on top of that? What do you do in a crisis, when sometimes you feel like your whole life is a crisis? That’s the topic of the seminar at 12pm (USA Pacific Time) today.

There are many more excellent seminars coming up later in the week – on Wednesday, Jenni Prokopy from ChronicBabe.com will talk about It’s OK to say NO: Building Healthy Boundaries (we all know it’s ok to say no – but … um … how do you do that??).

Also on Wednesday Marcia Ramsland, author of Simplify Your Life: Get Organized and Stay That Way will talk about simplifying your home.

Also coming up – Real Talk About Men and Chronic Illness, When Your Child is Chronically Ill, Helping Others Understand Your Pain, Being a Teenager with a Chronic Illness – and much more!

There are also many articles online, and guest bloggers with many helpful topics. For example, Will You Receive Disability Benefits If You have an "Open and Shut" Case? and When Your Children Are Ill.

Go now to the main Invisible Illness Week site to listen to archived seminars (you can also subscribe to the podcast), read articles, subscribe to the twitter feed, and do much more!

Headache and Migraine News is proud to be an official sponsor of this year’s Invisible Illness Week. Take advantage of the many resources available, and help get the word out about invisible illnesses of all kinds.

18 August 2009

More Headache Technology (for iPhone and iPhone Touch)

James Resources 2

Blakely Long from BetterQOL (Better Quality of Life) recently gave me a heads up about a new app for your iPhone that is basically another headache diary. BetterQOL, Inc provides web based resources and tools related to the health industry.

I said it’s "basically another headache diary", but that’s probably a disservice. This is actually a pretty slick app, and I think it could help a lot of patients if they’re willing to use it.

iHeadache was developed by neurologist and headache specialist Dr. Brian D. Loftus (I’ve read some of Dr. Loftus’ work before, such as what he’s written on orgasm headache). The nice thing about iHeadache is that it goes far beyond just telling you how many headaches you’ve had in a month.

For example, it uses International Headache Society criteria to give you an idea what type of headache or migraine you’re having (not every type, but some of the more common ones). It does this by checking the quick, yes or no questions you answer and other easy information you enter at the time of the attack.

Also, it uses the Migraine Disability Assessment Scale (MIDAS scale) to give you an idea just how disabled you are. Using these well recognized systems will help you and your doctor get started on recognizing where you’re at and starting treatment – much better than coming to your doctor and simply saying,"Um, I’ve been getting some headaches doc…"

There’s much more. You list the medications you take, and so are able to see if they’re helping or if you’re getting in the danger zone of taking too many. You can even enter medications that are being taken for other conditions, but may also impact your migraine attacks.

I won’t go into all the details of the app. I haven’t tried it myself, though I have gone through the website and help manual to get an idea how it works.

I’ll say this – I’m impressed with the flexibility and depth of what is still a fairly simple, easy to use application. Of course, nothing is every quite comprehensive and flexible enough. But as long as you realize that every diary, electronic or paper, has its limitations, and will never replace a talk with your doctor, I think this could really help a lot of people at least start getting a handle on where their symptoms are at.

The beauty of it really is that, in the end, it generates reports so that you can see summaries of what’s going on, which will give you overviews that are much more objective than you would get otherwise.

You can read more about the iHeadache app here, or you can purchase it for yourself at the Apple app store.

By the way, if you’ve already used the iHeadache app, please leave a comment and tell us your impressions.

17 August 2009

Get involved – share your opinion!

James Resources, Website news 0

Like the idea of working together to fight migraine, cluster, and chronic headache?

We just love working together!

Just wanted to remind you that there are a lot of ways that you can share your opinion and get involved around here! Here are a few ways you can be a part of what’s going on:

Share your art! Did you know that there’s a gallery of migraine art here? Incredible photos, drawings and computer art from people like you, giving us a glimpse of what it’s like to live with migraine. You can share your art here, or look around at the art that’s already there and leave your rating and comments.
Have a book to recommend? These are the reads most popular with our visitors, but that may change – leave your choice, and it will be added into the mix.
Our current poll! To the right on this page you’ll see our current poll – be sure you’ve given your answer, and then watch for future results and discussion. Some of our previous polls – how many doctors? Getting information Insurance coverage Headache season Not seeing a doctor? How long have you had chronic headaches?
Community Question! In my opinion, one of the most incredibly helpful experiments here has been the community question. For a time your answers on a specific topic are collected, and the best answers are turned into an article. The amazing articles so far have included Getting to sleep with migraine, What I wish you knew…, and Insurance: Getting covered with headache and migraine. The current question is What advice would you give to someone who has been newly diagnosed with migraine, cluster, chronic daily headache, etc? I’ve left it up a long time because I’m still looking for more good answers. I’m not looking for specific treatments that have worked for you, but more general advice on how to find treatments, how to cope, etc. Share your ideas here!
If you’re a HeadWay subscriber, you have special ownership in this site. You have access to a special form where you can share your suggestions for future articles – use it!
Comments – you all knew about this one, right? Be sure to leave your comments right here, on the topic of each post! Anything that interests you is open, but here are some posts that have had some conversation going – Topamax may cause language disturbances, Demerol for Migraine in the Emergency room, What is Migraine? (The Life Impact Story) and Splenda and Migraine revisited

So what are you waiting for? Be a part of the conversation – and join us in fighting back against migraine and headache!

14 August 2009

Invisible Illness Week 2009 – Just 1 Month Away!

James Resources 0

Invisible Chronic Illness Awareness Week (or you can call it Invisible Illness Week for short) is only one month away – I hope many of you will be able to take in some of the seminars that are planned.

This year Headache and Migraine News will be involved as an official sponsor. I would love to be involved more, but this time around my schedule is making it more difficult. But I encourage you to check out invisibleillnessweek.com to find resources, and help spread the word!

Of course there are many illnesses that are not obvious to those around us, and many of those are headache disorders and migraine, or diseases and conditions in which headache and migraine are a major issue. Invisible Illness Week is partly about bringing resources and hope to those with invisible illness, partly about networking and getting together and sharing, and partly about raising awareness.

Here are just a few of the topics that will be covered in the free online seminars:

Finding Health Insurance Coverage with a Pre-existing Condition (good one – and the speaker is an attorney and advocate for patients with chronic illness!)
Coping with Crises on Top of Chronic (doesn’t sound familiar to anyone, does it?)
Can Versus Should: Pregnancy, Children and Chronic Illness (issues a lot of people are dealing with)
Find the Job You Desire and Can Do (a tough one with invisible illness – get ready for some great tips!)
Surgery Preparation (now that sounds practical!)

These are only a few of the topics – read more and meet the great speakers here.

The dates are 14-21 September 2009 – promote it, check out the info on Twitter, Facebook, the blog tour, and much more – start here!

6 August 2009

1% Thursday – Take the MIDAS test

James Resources, Tips 1

MIDAS stands for Migraine Disability Assessment. The test is designed to help you and your doctor(s) think through your treatment in light of how migraine is impacting your life.

Now of course we’re here to fight all migraine. Just because you “only” get one attack every few months, doesn’t mean you shouldn’t get any treatment. This test is not about whether or not you should be treated. It’s about getting the best treatment for you.

Many people don’t take the time to think through how migraine impacts their lives. They only think about the days of work they missed, or maybe the days they actually have pain. In reality, there are many symptoms at work, and they impact all of life.

Though not a perfect tool, MIDAS does get you started thinking about how disabled you are. It gives you a more objective score to talk to your doctor about, and you can discuss your answers with her and talk about your treatment options more realistically.

It may also help others start to understand.

You can take the MIDAS (The Migraine Disability Assessment Test) here in a matter of minutes. However, if you aren’t sure of the answers, try to keep a migraine diary for 3 months first, then use it to fill in the answers again. Then go talk about your score with someone – preferably mention it at your next doctor’s appointment.

What is 1% Thursday?

Every Thursday at Headache and Migraine News (weather permitting) we’ll talk about one measurable, practical thing we can do to make our lives just 1% better. Usually it will be something very easy, sometimes it will be a challenge. Let us know if you try it, or share an idea of your own – and maybe a year from now we’ll see that things have really changed for the better!