Migraines are NOT Curable Yet!

There’s an interesting, yet somewhat pathetic, discussion going on over at Migraine Truth, a great blog written by Arabella. She was far nicer to a chiropractor who says Migraines are curable than I would have been. But, this whiney-butt doctor posted a comment asking her to remove her “harsh and negative” comments.

Hey, doc! If you can’t stand the heat, stay out of the kitchen!

I highly recommend Arabella’s blog and her most recent post, Migraines are Curable – Here We Go Again!

Regards,
Jon

Ali Sultaneh and His “Stolen” Surgery

If you frequent migraine forums you may have come across this dude named Ali Sultaneh. His claim? That he invented a surgery that can “cure” migraines.

His purpose on forums used to be to convince people that he could cure migraines. Over time, that purpose has shifted. Now he’s plaguing migraine forum members with his pathetic whines that his surgery has been “stolen” by other doctors.

First of all, no surgery can cure migraine. As I understand it, it’s a neurological and genetic disease that we don’t have a cure for yet. So, he’s either deluded or a liar on the “cure” thing. Maybe his surgery could be a good measure to prevent migraines. I don’t know, and that’s not my point.

My point is that he’s pestering people who can’t do anything about this supposed threat, patients. He needs to shut up, man up, and hire a lawyer. On one forum, author and patient advocate Teri Robert gave him excellent advice. She told him, quite correctly, that theft of a valuable surgery would be a huge story for a reporter and suggested that he go to the web sites of papers such as the New York Times and Washington Post, find contact information for reporters, and get in touch with them. Now, a sane human being would have thanked her for the advice, then taken it. But, no, not Sultaneh. He actually had the balls to attack her and accuse her of being responsible for migraine sufferers committing suicide because she doesn’t support him.

At best, Sultaneh is a jerk. Some migraine forums, where managing members is set up better, kick him out the minute he shows up. Others seem to put up with him. Why, I don’t know. It certainly isn’t in the best interests of their members. There’s nothing forum members can do about Sultaneh’s claims of theft, so all he’s accomplishing is pissing people off.

Sultaneh has attempted to post several comments here to tell you and me his woes. Ain’t gonna happen!

Sultaneh, if you’re telling the truth about your surgery, get a lawyer or contact a reporter as Ms. Robert suggested. Otherwise, shut the hell up. You’ve killed whatever credibility you may have had with your abuse of migraine forums and their members. Continuing this nonsense can only make things worse. People may feel sorry for you. Undoubtedly, some people are laughing at you. But the bottom line is that none of these people can do a thing about your supposedly “stolen” surgery.

Regards,
Jon

Squidoo, Migraine Lenses, and the Recent Fuss

Over on Migraine Truth, Arabella has posted twice now about problems she and a couple of friends experienced on Squidoo.

My first response was “What the hell is Squidoo?,” so went to find out. For others who might have been asking the same question, Squidoo is a site where people can sign  up, then create pages called “lenses.” Categorize your page into a wide selection of subjects, hope it gets viewed a lot, maybe make a few bucks from the ads, and so on. You get the idea.

One of the problems seems to be pretty common on sites that turn people loose and trust them to follow the rules about creating pages. People set up pages to sell just about anything and everything you can imagine, and they don’t give a damn about whether what they’re selling really has any value. They only care about the almighty dollar.

Those of us who live with this damned disease called migraine have had more than our fill of these people. Some of us have been desperate enough to spend money that we really couldn’t afford on some of these products, online books, etc.

There’s no sense for me to go into a lot of details about the situation Arabella and her friends found themselves in. You can read it yourself on Migraine Truth.

But this is my blog, so I’m going to add my opinion about what’s going on over on Squidoo. What probably started out as a good idea looks to be out of control. When I did a search for lenses about migraines, most of them turned out to be there as a platform for links to their web sites where they’re selling worthless crap.  Many, many of them are for products or those online bullshit books that have affiliate programs.

And Arabella has a valid point. It really sucks that Squidoo is so littered with that crap while they’re canceling accounts and deleting the lenses of people who either made the mistake of more than one person signing on from the same computer during an afternoon of visiting or simply telling the truth and giving those spam lessons low rankings. It freakin smacks of laziness, not enforcing the rules equally, and just plain stupidity on the part of Squidoo.

People at Squidoo probably don’t much like Arabella comparing them to pimps, but I have to say I think it’s pretty accurate, clever, and downright funny.

I went looking for and  found the forum on Squidoo that Arabella mentioned, and it was pretty cool. Many of the people there understood what she wrote and the problems. Of course, there are those who want to just ignore the problems and blame it all on her, but that will always be the case.

If you use Squidoo or write lenses there, you might give some thought to encouraging the people who make and enforce the rules to do so more fairly and to at least listen to people when they try to tell them that they’ve made a mistake about them trying to rig things. Until Squidoo gets far better at getting rid of the spammers, they really have no right to point fingers at people who give spam lenses low ratings.

Regards<
Jon

Cool Migraine Site and Books

Not too long ago, I was looking around on Amazon for new migraine books when I came across a pair of books with a concept I found interesting.

The “Managing Migraine” pair has one for patients and one for doctors. They’re written by people whose names I’m used to seeing as references for good articles:

• Richard B. Lipton, MD
• Kathleen Farmer, PsyD
• Roger K. Cady, MD
• Marcelo E. Bigal, MD, PhD

I ordered the book for patients and visited the web site, http://www.managingmigraines.org. Great book great site! I just ordered the book for doctors to give to my family doctor.

If you’re in the market for a good book, take a look at Managing Migraine: A Patient’s Guide to Successful Migraine Care and Managing Migraine: A Healthcare Professional’s Guide to Collaborative Migraine Care. I don’t think you’ll be disappointed.

Regards,
Jon

Driving with Migraines

Do you drive when you have a migraine? This is a really sensitive subject for lots of people. It’s a huge problem. Research says we’re impaired when we have a migraine. There are questions about the laws and what would happen if we had a wreck while driving with a migraine.

On MyMigraineConnection.com, Megan Oltman recently wrote an article about this, Migraines and Our Driver’s License. There’s also a discussion of this on the forum there.

The article and discussion are important and they’re informative and disturbing at the same time. Well worth the time to read and maybe take part in the discussion.

Regards,
Jon

Searching Migraine Sites

Have you ever Googled “migraines” and wondered how sites come up near the top?  Today, I was looking for new info by searching Google, and it boggles my mind what came up on the first page.

Lo and behold, the page that comes up first is Wikipedia’s page about migraine. That page is undoubtedly one of the LEAST reliable on the internet. I’ve watched that page over the last couple of years and have seen people who are total idiots run off some of the world’s top experts on migraine when they tried to contribute? Why? Well, in one case, an expert was accused of spamming just because their profile showed that they’d written a book and had a commercial web site. That person had not linked to their own material. In fact, that person had given peer-reviewed journal articles as the sources of the data. Unreal!

The second site is WebMD. It’s an OK site, but even my doctor sometimes shakes his head at the outdated information that shows up there. When running a migraine site, you either update it quite frequently, or you’re behind the current knowledge and research. Sad.

Third is MayoClinic.com. Ditto what I said about WebMD. What’s even more disappointing about the Mayo site is that they have great doctors, but their site sucks.

The site listed fourth is probably most disappointing to me. It’s MAGNUM, the National Migraine Association. Of the sites I’ve mentioned so far, that’s the one I’d expect to be the best, and it used to be, but no longer. The MAGNUM site used to be one where you could count on finding good information about migraines, treatments, and more. But for some reason the only sections of the site that have had anything added or changed for the last couple of years are areas that discuss political issues or list their board of directors. The site is stagnant and stale at best, useless at the worst. The home page of the site is so cluttered that it’s impossible to actually see anything on it if you have a migraine at the time. It looks like their webmaster learned from a kid given picture books and a pair of scissors to make a collage.

What’s my point. Well, I guess it’s that we can’t count on how high sites are listed in the search engines when we’re looking for good information. If someone has some big bucks to invest, maybe they can come up with a search engine that actually brings up the best sites first!

Regards,
Jon

Cindy McCain a Migraineur, Now an Advocate

Photo (c) Teri Robert, used with permission.

I don’t know about the rest of you, but I think it’s cool and exciting that someone as publicly visible as Mrs. McCain has decided to speak up, take point, and join the rest of us in our fight for better treatments.

There were quite a few articles about this in the last couple of weeks. I read them in People and Forbes and on blogs all over the internet.

Many of these articles and blogs had pretty much the same stuff in them, but there was one that stood out to me as being different. It was an article by Teri Robert based on an interview with Mrs. McCain. I think what I really liked about it was that she asked the questions I would have liked to ask if I’d had the chance. There’s just something special about an article written by and an interview done by someone who’s a migraine sufferer herself. It’s like the other people who interviewed her didn’t really understand migraines and what we go through, so they didn’t know the right questions to ask.

I’ve read some of Ms. Robert’s stuff over the years, and find her really good about standing up for us as well as wanting us to have good information to learn from. When I emailed her, she was also kind enough to allow me to use the photo from her article. Thank you, Ms. Robert.

Do you have migraines or headaches? Maybe you live with someone who does? If so, you really ought to read this interview. Interview with Cindy McCain: Migraine Sufferer, Advocate by Teri Robert.

Regards,
Jon

I’m Just a Migraineur

I spend a fair amount of time online reading web sites and blogs, often looking for good, reliable information about migraines. There’s a ton of it out there!

The other day, a buddy of mine suggested that I join in the fun and start a blog. So here I am. If you enjoy my blog, that’s cool. If not, that’s fine too. I’m not a health professional, or a writer – – –

Just a Migraineur!

Regards,
Jon