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 ♥

“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 ♥

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 ♥

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 ♥

Squidoo Update

I wanted to post a bit of an update to my last post, Squidoo: Pimping Spammers and Scammers.

There have been several comments posted here, and apparently some of them are due to something posted to a Squidoo forum. Evidently someone posted a link to my previous entry on Twitter. This person said she was a lensmaster with 227 lenses and was bragging about having “made a fortune on Squidoo.”

Speculation on that forum is that the person who posted to Twitter was me or one of my friends. Nope. None of us. I hear that it was also suggested on the forum that people leave comments on my blog to share their experience so that “the good press would outweigh the bad.”

Well, Squidoo fans, please think before you comment. Those who came before you have not left me kindly predisposed towards more comments about Squidoo. If you want to call me a “liar,” tell me to “fess up,” or otherwise insult me, your comment will be deleted. Period. If you want to say something constructive, that’s great. Otherwise, just don’t.

I stand by the point in my original post. It sucks that the people at Squidoo deleted my account and that of one of my friends, plus the lenses that one friend had done. They gave me no opportunity to be heard, no second chance. Same thing with my friend who hadn’t done lenses. Her account was deleted. As for our friend who had done lenses — she asked for a review. When the response came, there wasn’t a word about our other friend or me. They just told her that they’d deleted her lenses because she’d given too many other lenses low ratings. They totally ignored the fact that those lenses were mostly affiliates selling a couple of Migraine “cures.” Never mind that their Terms of Service don’t say a word about limiting low ratings.

Squidoo says they’re doing away with such spam lenses,  but a quick search today showed plenty of them still there. So, it still seems to me that lots of spammers are making money while other people are penalized for being truthful. I miss the days when people were given the benefit of the doubt.  Affiliate spam is pretty obvious, but giving too many low ratings? Get real.

Best,
Arabella ♥

Squidoo: Pimping Spammers and Scammers

Another friend of mine and I took a bit of a vacation last week to visit another friend. We’re all very like-minded in that we hate all of those sites that claim to have “cures” for Migraines. Whenever we get together, one of the things we do is surf the net. Another thing we’d done in the past and did again was visit Squidoo. We all have our own accounts, but since we were together, we took turns using the same computer.  One of my friends has created “lenses”  on Squidoo to share good Migraine info and tell people that there’s no cure yet. My other friend and I don’t really have the knowledge or talents to create lenses, so we sign on, read, and “rate” the lenses.

A couple of days later, all three of us received an email from Squidoo. It started out:

Yikes! We’ve noticed that you have done something that violates our Squidoo Terms of Service. http://www.squidoo.com/pages/tos.

Your entire account has been terminated and its lenses deleted.

The top 5+ reasons an account could get shut down can all be viewed here: http://www.squidoo.com/squidgone

Specifically, your account was flagged for deletion because you employed malicious means or intent to fake people out on your lenses. Our records show that your account has engaged in a significant effort to manipulate star ratings, and therein the LensRank of various lenses.  This usually means creating multiple accounts to cross rate and boost your own lenses and/or lower the rank of others.

What the hell? Then it hit me. Because we’d all used the same computer, they ASSUMED that it was one person violating their rules about multiple accounts and manipulating the ratings.

Now, two of us — the two who haven’t created lenses — wouldn’t like having our accounts deleted, but we would HATE it if our using her computer caused our other friend to lose her account. The lenses she has created (over a period of a few years) are good ones, and they need to be there.

Here’s one reason they need to be there:

For all their bitching us out and deleting our accounts, Squidoo is an absolute mecca for spammers and scammers. Lenses touting things like The Migraine Relief Guide and The Migraine Solution abound! Now, come on! People don’t create lenses about those to help or enlighten anyone. They create them to SELL those products and MAKE MONEY!

So what are they thinking at Squidoo?

I haven’t a clue what they’re really thinking or if they’re really thinking at all. They “lock” lenses and ask questions later, yet their site is overrun with spammer and scammers who are allowed to make multiple lenses about worthless products just to make money. See for yourself. Go to www.squidoo.com and search for lenses about Migraine or Migraines. The majority of the lenses that come up (And I’m not exaggerating, it really is the majority.) are selling worthless products and services.

Squidoo COULD be a good site. It could be if the people who run it would just think. Instead of doing things the easy way and locking the lenses and accounts of people who make the simple mistake of logging on from the same computer, they need to be looking at the CONTENT of the lenses THEY HOST. They make money from the ads on lenses, so really, they’re just pimping the scammers and spammers, making $$ from the crap they put on lense after lense.

Best,
Arabella ♥

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 ♥

Considering a Migraine Trial or Study? Beware!

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 ♥

About.com: Headaches and Migraines Strikes Out Again

We NEED more good Migraine sites. So, I’ve kept hoping that the About.com site for Migraine and headaches would get better. But, it hasn’t, which is especially sad considering that it used to be THE best. Over the last couple of years, however, it has gone downhill…

• For a rather long period of time, perhaps two years, there was no “guide” for the site. Nobody keeping it running, adding anything new, blogging, reporting news in the field, sending newsletters, etc.
• Their forum, as the rest of the site, used to be THE best. No longer. There seems to be no moderation. Nobody is there to help members find good information. Spammers and scammers run amok. This is actually quite irresponsible. Migraineurs are often so desperate for relief that they’ll try pretty much anything. That leaves them very vulnerable to these spammers and scammers.
• Some of their articles leave me shaking my head. For example, from their newsletter today, All About Basilar-Type Headache. Now, come on! They’re not Basilar-Type Headaches; they’re Basilar-Type MIGRAINES! When you look at the sources for this article, you see “Migraine,” not headache.  This article isn’t written by the “guide,” Dr. Foley. It appears to be some kind of licensed article. This is what it says at the bottom of the article: “LifeWire, a part of The New York Times Company, provides original and syndicated online lifestyle content. Betsy Lee-Frye is an independent journalist living in Kansas City, Mo. Her work has appeared in the Dallas Morning News, Better Homes and Gardens Special Interest Publications and the St. Joseph News-Press.“
• Interestingly enough, when you click on one of the related searches, “basilar headaches,” the results that come up are articles containing conflicting information:
  • First in the search results is the article written by Betsy Lee-Frye.
  • Next comes What is Basilar-Type migraine?
  • The third link is their glossary entry for Basilar Migraine.

Well, I suppose I could continue, but it seems pretty pointless.  It’s just disheartening to see what was once one of our very best resources now failing so badly.

Best,
Arabella♥

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 ♥