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Archive for the ‘People telling the truth’ Category

One of my readers, renaissanceguy, made a couple of comments yesterday. In one of them, he made an excellent point. He said,

This blog is amazing, and I applaud you for exposing lies and presenting truth. While I agree with you, I want to urge caution.

You don’t want to give people the impression that no relief is possible. I think that with your heavy emphasis on there not being a cure, at least not yet, you might make people think that they are doomed to find no relief at all.

He’s right. I don’t want to make people think we’re “doomed.” We’re not. In writing this blog, I often write about people claiming they have a “cure” for Migraines. Some of the reasons I write these “cure-busting” posts are:

  • Some of these people are making big bucks from selling us information that we can find other places online, FREE.
  • Some of them are making money from selling us products, “medical” services, or theories that have not been proven. Some of these even claim to be the “cure” for multiple diseases.
  • We all need to know the truth, that Migraine is a disease that can’t be cured yet. There ARE good treatments that can help us live better, easier lives, but we need to know the truth and be realistic.

Let me say this for the record. We are not doomed to live hopeless lives because of Migraines. There are excellent treatments that can both stop Migraines once they start and prevent Migraines. Migraine preventive medications can help make our Migraines less severe, shorter, and less often. The disease cannot be cured, but it can be managed.

Taking renaissanceguy’s comment to heart, I’m going to start doing a different type of post on a regular basis, one that highlights some of the truths I’ve come across recently. After all, we do need to see the positive too, don’t we?

Here are some truths I’ve seen recently:

There have been a couple of blog entries recently that were about the difficulty of living with Migraines, how they can drive people to the point of suicide, and how to deal with these feelings. This is a tough, but important, topic, so I want to give you links to those too:

In closing, I want to thank renaissanceguy again and all the bloggers out there who are sharing the truth.

Have a good weekend!

Best,
Arabella

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Migraines or not, I like peace and tranquility in my life. I tend to be somewhat Zen about things, believing in a higher power and in Karma. What I send out into the universe will be returned to me.

When I started this blog dedicated to the truth about Migraine disease, I knew there would be times when it messed with my peace and tranquility. Times when I’d take a lot of heat for what I said here. I decided I could do it, that I just wouldn’t take things personally. But, because I’ve seen other people sorely abused by the people who become angry with them, I also made a decision. A decision that I would write this blog under a nom de plume, a pen name. I don’t want people emailing me at my personal email address, searching the internet for my home address or phone number, fussing at me on a personal level. A couple of bloggers I asked about this thought it was a great way to keep things from getting too personal. So, although the information on the “about” page is correct, nobody knows my true name.

You may wonder why I’m telling you this now. I’m telling you now because I also want to say a few things about what I blog and how people respond. My goal is to talk about treatments and theories I see online and am concerned about, not the people behind them. To post about writings that are truthful and correct or are mistaken, incorrect, or just old science. But, people take things very personally sometimes, and they lash out at people who write something they don’t like. Because I get so many spammers trying to post comments to this blog, all comments have to be approved by me before they’re published. People who want to comments don’t have to share my thinking or agree with me, but they do have to exercise common courtesy. Nasty comments are not approved; they are deleted along  with the spam.

The internet has been great for us. It’s been an explosion of information available, far more than ever before. On the other hand, it has its drawbacks. I’m glad I decided to write under a nom de plums, but dislike the reasons I feel I need to. For all the personal information available, the internet is still very impersonal in a way. People will write things to other people that they’d probably never say to someone’s face. They’ll express anger at a level that would probably considered assault and have people calling the police were they to express it in person.

In the end, this is my blog, and I’ll post or not post comments as I see fit. If you understand that, great! If you don’t understand it or don’t like it, please go read someone else’s blog and just skip mine.

Best,
Arabella

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Today I’m going to take a break from exposing the bad side of Migraine information on the internet to discuss a truth. More Migraine research is sorely needed. Anyone reading this probably already knows that. Another truth is that a major factor holding back Migraine research is funding for that research.

The Alliance for Headache Disorders Advocacy (AHDA) has been working to get the amount of funding from the National Institutes of Health (NIH) increased. They have some sobering statistics about Migraine and research funding:

  • Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the US every year.
  • Migraine alone is the 12th most disabling disorder in the US.
  • Headache disorders are the most prevalent neurological disorders, affecting more than 90% of all Americans.
  • The US annual direct and indirect economic costs of headache disorders exceed $31 billion.
  • The NIH expended less than $10 million in 2006 towards all research on headache disorders, comprising less than 0.05 percent of its total budget. (Yes, that’s less than ½ of 1%.)

In their latest update, the AHDA reports progress in the form of appropriations bill report language and a planning meeting with the NIH. I congratulate them on that progress, but the increased research dollars aren’t a reality yet.

Yesterday, I can across an article by Teri Robert about the Migraine Research Foundation (MRF). A bit about the MRF:

The Migraine Research Foundation is committed to furthering the understanding of the causes and mechanisms of migraine, helping to develop improvements in treatment, and finding the cure. We believe that migraine research is very important and under-funded. As a result, MRF is actively seeking to provide seed money grants for projects that are important, achievable, and innovative that will ultimately lead to better treatment and quality of life for migraine sufferers.

The MRF is now accepting research proposals for their next round of grants. There’s more information about that in Migraine Research Foundation Announces New Request for Proposals.

The AHDA has worked tirelessly to increase the amount of research funding Migraine gets from the NIH. Their news of appropriations bill report language and the planning meeting with the NIH is indeed good news and very welcome. I don’t want to be negative, but given the state of the U.S. economy, I have to wonder how long it will be before that progress turns into real dollars available for Migraine research. I’m not an expert on this, but I suspect the length of time we wait for those dollars will be tied to the length of time it takes our economy to recover.

In the meantime, I’m glad to see other organizations stepping in to raise research funds. Along with the Migraine Research Foundation, there’s a new foundation started by the American Headache Society, the American Migraine Foundation.  Instead of waiting for the government to fund more research, maybe we need to put more emphasis on the MRF and AMF. Maybe, when we have a few dollars to spare, we need to donate to these foundations. It’s something to think about.

Best,
Arabella

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Last week, I shared that MigraineCast, a great Migraine podcast is back. I just discovered that Teri Robert, who produces MigraineCast, tried something new yesterday. She did MigraineCast’s first video podcast, Migraines, Headaches, and Sleep: A VideoCast.

As soon as I watched it, I emailed Teri to tell her I hope she does more of them. If you love great Migraine information as much as I do, you’ll be interested, so I’ll share part of her reply:

… That particular video wasn’t made with podcasting in mind, so the video quality isn’t as good as I’d like it to be. But, now I know that I can do video podcasts as a part of MigraineCast, I’ll be doing more of them in the future…

That’s good news for all of us!

Best,
Arabella

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The claim is “Migraines Down 75%, Medications Down 95%, My Drug-Free Insider Secret.”

Julieann, the author of this e-book, talks about “managing Migraines instead of suffering with them.” Sounds good, doesn’t it?

Author and patient advocate Teri Robert shelled out the bucks to buy this e-book and review it.

I’m not going to steal Teri’s thunder by revealing what she had to say. I hope you’ll take a few minutes and read it for yourself. Please check out Review: Migraines Managed by Teri Robert.

To Teri – Thanks for doing this for all of us!

Best,
Arabella

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blogcarnival125The October Migraine and Headache Blog Carnival was posted today on Diana Lee’s Somebody Heal Me. The theme for this month is “Alternative Therapies.”

The purpose of a blog carnival is to bring together bloggers writing on a common theme or issue, then get their work out there for people to read. Diana does a great job of  putting this carnival together, and it features some top Migraine bloggers.

I hope you’ll take some time to read some great Migraine Truths in this month’s carnival. Alternative Therapies: October 09 Headache Blog Carnival.

Thanks for hosting this carnival and keeping it going, Diana! Is there any way you can work “Migraine” into the title of it?

Best,
Arabella

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Thanks to my handy-dandy Google news reader, I just came across some important Migraine truth over on MyMigraineConnection.com. Some surprising truth.

You know how we’re always told that generic drugs are the same as the brand name? Well! That’s not necessarily true, and generics from different drug companies can theoretically vary a great deal.

This is something I think everyone who ever uses generic drugs should read: Did You Know Generic Migraine Medications Can Vary? by author and patient advocate Teri Robert.

Best,
Arabella ♥

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