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Posts Tagged ‘Migraine blogs’

When it comes to Migraine truth, nobody tells it better than patient advocate Teri Robert. On her blog at www.PuttingOurHeadsTogether.com, she’s started a new series that I absolutely love – Migraine Pearls or Onions?

She started this feature in late January, and it’s quickly become one I watch for. Here are her “Pearls” and “Onions” so far:

Go, Teri!

‘Nuff said.

Best,
Arabella

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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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An interesting site and blog I came across are at www.headache-adviser.com. The woman who writes and runs the site is a physician assistant practicing in neurology. She says she has “been specializing in headache medicine for over seven years” and lists other qualifications that make her an “expert.”

After that introduction, you’re probably wondering why I’m writing about her and the site and why part of the title of this entry is “When ‘Experts’ Can Confuse.”

The answer is actually pretty darned simple. In “headache medicine,” most specialists follow the gold standard for diagnosing and classifying headache disorders – the International Headache Society’s International Classification of Headache Disorders, 2nd Edition (ICHD-II).

There are health care professionals who give diagnoses that aren’t part of the ICHD-II, which might not be so confusing but for one detail. They don’t use these diagnoses consistently. One of the most frequently used of these so-called diagnoses is “ocular Migraine.” It’s not part of ICHD-II, and you can find it online used to describe all kinds of different symptoms from a Migraine with a mild visual disturbance to a Migraine that causes full blindness in one eye to any Migraine that has the visual aura, but no pain.

And this is what’s confusing about Migraine-Adviser. I’m not even going to go into the types of headaches she talks about that aren’t in the ICHD-II, but here are some supposed types of Migraines she writes about:

  • Vestibular Migraines (She also says, “the name for this is just another name for vertiginous Migraine.”
  • Cluster Migraine Variant
  • Complex Migraines (She lists weakness on one side of the body as a symptom of “complex Migraine.” A check with a couple of Migraine specialists and researchers verified for me that the only form of Migraine with actual motor weakness as a symptom is hemiplegic Migraine.”
  • Ocular Migraine

Oh, and here’s an interesting side note. This “expert” attended the International Headache Society meeting lass month. OK. Well, maybe  she’s unfamiliar with the IHS diagnostic criteria and classification system.

In any case, the point is that it’s disappointing to see sites that could do so much good possibly adding to all the rest of the online confusion instead.

Best,
Arabella

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JankkDid you know you can subscribe to Google alerts to have notices of new information on web sites and blogs delivered to you via email? It’s a wonderful service!

Lately, I’ve received several Google alerts to postings on jankk.com, a blog where the header reads:

Migraine Help, Migraine Headaches
Having Migraine Headaches? You need to treat it right.

The form of this blog is that the administrator posts a question as a blog entry, and readers post answers. Seems rather a strange format, but it could work.

One post / question that particulary caught my attention was, “What Are Basilar Migraines and Hemiplegic Migraines.” When I first saw this, there were a couple of answers that seemed that they might be good, but the links in them didn’t work. When I looked again, a great Migraine writer and advocate has posted very informative links on both basilar-type and hemiplegic Migraines. It was looking as if the blog could be pretty valuable, very recommendable.

However, when I returned to see if the first links had been fixed, the later posts with working links had been deleted.

So, what’s the deal with this blog? Why does this person keep doing it? I don’t really know, but there are two possibilities I can think of:

  1. He or she is hoping that others will post detailed answers without links, thus adding to the value of the blog.
  2. He or she just hopes people will click on the Google ads so he or she can make $$ from our misery.

Whatever the reason, it really stinks that the administrator of this blog is so small-minded, so self-aggrandizing, so egocentric that he or she is threatened when others post valuable links in response to the questions posed.

If you’re looking for good Migraine blogs, don’t waste your time on Jankk’s. It’s sad… It’s pathetic… It sucks.

Best,
Arabella♥

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