Migraines, Blogging, Attitudes

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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Considering a Migraine Trial or Study? Beware!

Since Mr. Spencer seems to be on the prowl and attempting to make comments to my blog again, I thought I’d bring  this closer to the top…

Clinical trials and research studies are extremely valuable to all of us. They bring knowledge and better treatments. To perform clinical trials and studies, researchers often need patients to volunteer for the research.

For many reasons, clinical trials are closely regulated by governmental agencies. Some of those reasons are:

• safety,
• ensuring the accuracy of the data, and
• protecting the patients who enroll in them.

If the protocols for a trial or study have been reviewed and approved by the review boards that govern them, they will have a clinical trial identification number. The announcement for the trial or study will give you enough information to know if you might be interested. Some studies just gather information. Even so, you want to be careful to whom you give personal and medical information.

If you’re considering participating in a clinical trial or study, here are some points of information that you will want to check out:

• Who are the researchers?
• What are the qualifications of the researchers to be conducting the trial or study?
• What is going to be done with the information gathered and/or the data from the trial results?
• Who is funding the trial or study?
• What is the clinical trial identification number?

This is information everyone who considers a trial or study should have and understand. If you’re likely to be in that position, please either bookmark this post or print it.

I started writing this when I had a Migraine and left it for several days. Now, I’m glad I did. Someone who reads my blog because someone who reads my blog sent me an interesting email the other day. It seems that Barry (Caffeine) Spencer is recruiting for a “trial study.” This is what he has posted on his site:

Participate in a migraine trial study!

Migraine patients are invited to participate as outpatient subjects in a trial study investigating the effect of caffeine abstinence on migraine headaches.

The study period lasts 24 days: a ten day base period, four days of self-imposed weaning from caffeine, and ten days of self-imposed caffeine abstinence. Subjects will record the date and severity of any headaches they get during the study period.

Our reader wrote to Mr. Spencer and asked some of the very questions I’ve listed above. To his credit, Mr. Spencer did reply, but his replies are not ones that I would accept as these needed to join his “trial study.” Here is his reply:

The principal and sole investigator is me, Barry Spencer. I have no university degree or professional certification, and am not associated with any institution.

It’s a type of cohort study. There is no control group; subjects act as their own controls. There’s a ten day base period during which subjects don’t alter their usual caffeine intake habits, followed by a four day weaning period during which subjects gradually decrease their caffeine intake to zero, followed by a ten day caffeine abstinence period.

There is no blind or placebo.

This first trial study investigates the effect of attempted caffeine abstinence on migraine. A follow-up trial study will investigate the effect of verified caffeine abstinence on migraine.

The “center” is me, located in the US (San Francisco, California). The subjects communicate with me via email and need not meet me in person.

This trial study was not registered in a public registry prior to onset of patient enrollment, so there is no clinical trial identifier number. Because the intervention is avoidance of a drug, it isn’t a controlled, clinical investigation of a product subject to FDA regulation, so public registration and reporting of results are not required by FDAAA or US Public Law 110-85.

The trial study is entirely funded by me, Barry Spencer.

Where and how the results will be published has not been determined. I will show the results to several prominent headache researchers and ask for their opinions. Because this trial study was not registered in a public registry prior to onset of patient enrollment, biomedical journal editors associated with ICJME can be expected to refuse to consider the results for publication. Nevertheless the results of this study shall be published. If no biomedical journal will publish the results, I will self-publish the results on an Internet website. The efforts of participating subjects won’t be wasted.

Interesting responses.

No degree, sponsored by no institution, possibly self-published results?

When I see something like this, I have to wonder what the problem with the proposed “study” is.  This one is simple enough and potentially inexpensive enough that it shouldn’t be difficult to get professional researchers involved. This is the type of study that could be an excellent fit for a university.

If you’re looking at information about a clinical trial and want to verify its legitimacy, look for it to be listed at ClinicalTrials.gov.

Best,
Arabella ♥

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Headache-Adviser: When “Experts” Can Confuse

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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“No More Migraine?” A Vitamin Cure?

Greetings, dear readers!

Today, I get to report what I consider to be yet another “cure” scam without doing much work. Over on MyMigraineConnection.com, Teri Robert is reporting on “No More Migraine,” yet another cure e-book, from SufferingFromMigraine.com.

It seems that John Benak claims that taking a certain brand of a certain vitamin complex has cured his Migraines. It also seems that he’s so all-knowing that he says it’s safe for everyone, including children. It also seems that he feels that being down on his luck and out of a job entitles him to scam people. What a creep!

But, rather than go into more detail here, I’ll send you to the truth as written by Ms. Robert. Please take a look at her review of “No More Migraine.”

Best,
Arabella ♥

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Migraine and Headache Blog Carnival

The 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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Closing the Squidoo Saga

I want to remind everyone reading this of   *WHY* I wrote about Squidoo on a blog called Migraine Truth, the purpose of which is, at least in part, to expose sites, products and services that are not in the best interests of the truth about Migraines.

There are entirely too many “lenses” on Squidoo that exist partly, primarily, or solely to sell products such as the Migraine Relief Guide. When I was rating lenses, I was focusing on those that were affiliates selling that “guide,” so I’m going to use it as a prime example of the spam lenses on Squidoo.

From having read it myself and from this review, I know without a doubt that it contains:

• information that is out-of-date
• information that is incorrect
• NO information that can’t be found elsewhere for far fewer $$ or even free

From reading it myself, from that review, and from other bloggers, I also know:

• The same $37 that is charged for the Migraine Relief Guide could be spent in a book store or on Amazon.com to buy two or three excellent Migraine books that would be FAR superior.
• Although sites for the Migraine Relief Guide have sections written or appearing to be written by Elizabeth Hayden, she no longer owns and sells the “book.” It is now owned by someone else.

Anyway, enough time spent on Squidoo. I’ve said what needed to be said about in regards to Migraine truths. I’ve passed information along to you, and that’s what’s important. The people at Squidoo couldn’t care less about a few people, and nothing I could ever say would change that.

Tomorrow will find me writing about something else related to the truth about Migraine disease, and that’s as it should be.

Best,
Arabella ♥

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HealthyLivingRX: Advice to Ignore

Thanks to a Google alert, I came across yet another blog  / site where they need to either do better research or keep their advice and opinions to themselves.

HealthyLivingRX is a site built with WordPress, the same blogging software I use for this blog. WordPress is great because it allows to you build an entire web site with their easy-to-use interface. It’s just a shame that some people have discovered this.

The specific article I found is titled Ocular Migraine Treatment: Is it Really Necessary? Yeah, here we go again with the “ocular Migraine” bit. Doctors who know what they’re doing generally use the International Headache Society’s International Classification of Headache Disorders, 2nd Edition (ICHD-II), to assign diagnoses to Migraine and other headache disorders. This makes a lot of sense because it keeps everyone on the same page. In the ICHD-II, there is no diagnosis “ocular Migraine.” Sure, we see it in many places online, and some doctors use the term. The problem is that the doctors and sites who use the term don’t use it to mean the same thing. Thus, my first problem with this article is that the information is inaccurate and not helpful to Migraineurs who really need an accurate diagnosis.

I have an even bigger problem with this statement in the article:

“Ocular migraines can be disturbing to experience, but they are generally not harmfull.”

Aside from the fact that they misspelled “harmful,” this statement COULD BE harmful. New research is showing that Migraine might be a progressive disease. It’s showing that some Migraineurs develop lesions on their brains, and we don’t know yet what problems those lesions might cause. Experts in the field advise preventing as many Migraines as possible AND stop the Migraines we do get as soon as possible. So, this statement pretty much tells people it’s ok to NOT treat these Migraines, and that might be quite unsafe.

Please remember that these people are NOT qualified to give us medical advice. In the case of this site, I can’t even say that I’d read it at all again. I simply do not trust it. It’s really a shame there’s no way to get such nonnsee removed from the Internet.

Don’t believe everything you read. Be safe!

Best,
Arabella ♥

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Sharing Truth About Generic Migraine Meds

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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“Disconnect!” to Cure Your Migraines

I was in the mood for two things today:

• “busting” a Migraine cure
• a good laugh

So, off to YouTube I went. It didn’t take long to find this…

Ummmmmmmmmmm, yeah. A really good laugh. Does this guy think we’re like Pavlov’s dogs? He’s going to sound a buzzer and shout, “Disconnect!” and our Migraines will be cured?

Would someone please tell me why I keep hearing a strange song in my head? Wait. What IS that song? Is it the theme song from an old television series? Help!

Best,
Arabella♥

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Figuring out Jankk’s Migraine Help Blog

Did 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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