A good question for Migraineurs...

What could someone else give you to make your life with headaches or Migraines easier?

What gift would you give yourself?

These are the questions Teri Robert asked on her site at About.com. They're great questions, and she has some wonderful suggestions.

Check it out!

Shalom,
Abi

People who blog about Migraine disease...

People who blog about Migraine disease and speak as if they're an authority offering educational information should do at least a bit of research before blogging. Incorrect information can be highly detrimental, confusing more people than it helps.

This morning, I ran across a blog entry entitled, "Migraine headaches come in two varieties." Not only does this person think that Migraine with Aura and Migraine without Aura are the only two "varieties" of Migraine, he or she still thinks that "Rapid changes in the flow of blood to the head" are the cause of the Migraine. Researchers have now shown that genetics and overactive neurons in the brains of Migraineurs are the cause of the disease, and that the blood flow changes are part of the Migrainous process, i.e. more a symptom than the cause.

Please, if you're reading blogs or searching the Internet for information about Migraine disease, know who wrote the information you're reading and that they actually know what they're talking about.

Leading patient advocate Teri Robert does know what she's talking about. You can count on anything she writes to be well researched and accurate. If you want to know about the types of Migraines or the cause of Migraine, visit one of her sites:

• Help for Headaches and Migraine
• MyMigraineConnection.com
  

Learning about this disease is critical. Let's learn what's correct.

Shalom,
Abi

Why do people fall for this stuff?

A Google News Alert sent me to check out another blogger's entry, "Easy Steps to Become Migraine Headache Free" this afternoon. Groan. Here we go again. Someone else writing that stress is the Big Bad Wolfe and that controlling our DISEASE is easy.

According to Javier Fuller, who wrote this little ditty, controlling "Migraine Headaches" is as easy as chiropractic adjustments, biofeedback, dietary control, and finally, "think about other pleasant ideas, do physical and breathing exercises or go for a brisk walk and ease your tension." According to fuller, "Following the above disclosed measures, you will soon find yourself migraine free."

Oh, yeah! NOT. I've done all of those things. I walk daily, meditate, do all the breathing exercises. I've tried chiropractic adjustments. Did nothing for me. I've done biofeedback. I employ dietary control. I'm not Migraine-free.

I did some checking to see who Javier Fuller is. He writes articles posted to a site called EzineArticles.com. His bio says, "I like reading and writing." It's a shame he doesn't like researching what he writes. He writes on other issues too, life-changingly important issues such as "Wanna Buy Cheap LCD Television?" and "Choose Wedding Songs To Your Heart's Delight." Enough said.

Shalom,
Abi

MAGNUM, My Site of the Day

If you're a Migraineur or know someone who is, this is a web site you need to visit and bookmark! There are other organizations for headaches and Migraines, but MAGNUM is the only nonprofit organization devoted specifically to Migraine DISEASE.

MAGNUM was founded by Michael John Coleman, who has suffered with this disease since he was a child. The organization has a superlative staff and board of directors including my mentor Teri Robert. The MAGNUM site is one you can count on for accurate information from trusted professionals in the field.

From the MAGNUM site:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

MAGNUM also has an excellent Migraine Blog. This is another site to bookmark!

On a related note, if you have a few extra $, a donation to MAGNUM helps ALL Migraineurs. A donation is also a great Christmas gift for Migraineurs you know. MAGNUM is a 501(c)(3) charity, so donations are tax-deductible.

Shalom,
Abi

Wikipedia, a great concept runied by jerks

I used to love Wikipedia. Even when idiots messed up the "articles," someone would come along and fix them, and I always found something interesting and maybe even unusual about it.

Wikipedia was such a lofty concept — articles that anyone could contribute to, collaboration in fine form indeed. It seemed to me to be a concept and site that had a brilliant future.

The wiki concept is in the process of living up to its potential, but not — I fear — on Wikipedia. The problem is that there is too little oversight and control on Wikipedia, and people just can't help themselves. When nobody is watching the store, someone always has to come along and be a jerk.

I'm not going to mention names because I don't want to embarrass the friend whose experience I'm writing about. Let's just call my friend Mary Jane. Mary Jane is probably the kindest, gentlest person I know. She has a web site that has a few Google ads on it, but I doubt that they bring in enough to even cover the expenses of keeping her site running. She also works for an online information service, but I know she doesn't make much at it, and what she does make is spent helping people who have less than she does.

When I talked to Mary Jane earlier today, she was nearly in tears. She had been working on several articles on Wikipedia, all of them interrelated. Someone had edited a few of the pages and removed links to both of her sites. Not only that, but this person (who had not contributed to those pages in recent history) went on to attack her on the "talk pages" for those articles, calling her a spammer. Excuse me, but what a bitch! I went to Wikipedia and read the exchange for myself. The Bitch said that Mary Jane had been warned about spamming before. Not true. I read all the appropriate pages to see for myself. Mary Jane had indeed had some conversations with other people about links, but there was absolutely no mention of the links that were removed today. None.

So what ever happened to common courtesy? I'm proud of Mary Jane that she had the self control and professionalism not to tell the Bitch to where to get off. I don't think I could or would have had that much self control. But then, Mary Jane is a class act. The Bitch obviously isn't.

Yes, it was great concept. Now it's just a huge public failure. Not just for this reason, but for many, not the least of which is the plagiarism which has run rampant there for too long and now the virus attack on the German Wikipedia. Sad, but a failure on too many levels to list.

Yes, Wikipedia was a great concept. But then again, so was the Roman Empire.

Shalom,
Abi

Great site about Migraine with aura!

The Migraine Aura Foundation has a marvelous web site. One of the most fascinating sections there is their section of Migraine Art.

If you've never visited this site, please do. You won't be disappointed.

Shalom,
Abi

Thumbs Down for About.com Editor

In an earlier entry, I explained that, following Teri Robert's lead, I always capitalize Migraine. When I first asked Teri why she capitalizes it, she told me,

I capitalize Migraine as an advocacy issue. Too many people still believe that Migraines are "just bad headaches" when, in reality, Migraine is a potentially debilitating genetic neurological disease. By capitalizing Migraine and various forms of the word, we set it apart and, hopefully, cause people to question and come to a new awareness of Migraine as a disease.

Last week, when reading Teri's new article on About.com, "What Is Retinal Migraine?" I noticed that she had capitalized Migraine only in the title. I asked her why. She replied,

My new editor has asked me to follow standard style guidelines. That means that only diseases named after a person would be capitalized, and migraine was not named after a person.

What?! Of all the petty nonsense!

To that editor, should you ever happen to read this...

However subtle, capitalizing Migraine is important. The constant recognition of what Migraine can do to our lives is one thing that has set your headaches and Migraine site apart from other web sites, part of what has made it the site many people consider to be the absolute best on the entire internet. Have you never heard the saying that there are exceptions to every rule? Shouldn't standing out from and above everyone else be more important than style guidelines? Shouldn't style guidelines complement what's written rather than constraining it?

What a pity.

Shalom,
Abi

Visit this new blog...

I see that health writer and patient advocate Teri Robert has started a new blog at WeAreAdvocates.com. I love her statment at the top of the page:

Optimal health care can be achieved only when patients are educated about their health and patients and physicians work together as treatment partners in an atmosphere of mutual respect.

This blog is bound to be great, and I'll enjoy watching it develop. Hope you watch it with me!

Shalom,
Abi

Be skeptical of Migraine info in press releases!

Google has a great feature that allows you to customize a page with news items about whatever key words you select. I love it, but have learned to be skeptical when I come across press releases there.

One I read just today is a perfect example, "Modern Treatments for Migraines and Frequent Headaches." The opening paragraph of this release says to me that this press release was most likely issued to bring this doctor business, NOT to help us. The first paragraph reads,

Today's cranial headache treatments provide a permanent end to years of needless suffering. Dr. John Halmaghi at the Michigan TMJ/Headache Institute explains the reasons behind migraine headaches. His unique program is guaranteed to permanently end chronic suffering from migraines and frequent headaches. He also explains why your previous doctors have not been able to help you.

Danger, Will Robinson, Danger! Look at that paragraph carefully. "Permanent end," "guaranteed to permanently end chronic suffering from migraines..." OK, fella, get a clue! Migraine is a genetic neurological disease. There's no cure, and most of us know that.

Personally, I find this press release and Dr. Halmaghi's claims insulting. I know there's no cure. I also know that there are treatments that, at least for some of us, can prevent most of our Migraines. BUT, that does NOT constitute a cure.

To Dr. Halmaghi, should you come across this post, certainly you know better than to claim to be able to "cure" Migraines. Shame on you!

Every Migraineur should wear medical ID!

Can you remember every important detail of your medical history and all of your medications info when you have a Migraine? I certainly can't, and any doctor who treats us needs to know those things. Put that together with the always possible accident, and we could have a recipe for an enormous problem. That's why I strongly believe that EVERY Migraineur should wear some kind of medical ID.

Teri Robert at About.com has created a really cool new "gallery" of some of the medical IDs available. Why not check it out?

I usually wouldn't say this, but...

Dr. XXX and nurse YYY deserve to have a three-day unremitting Migraine. I need them to have one, and one that I know about at that!

Last night was pure hell. Between my menstrual period beginning, barometric pressure changes, and forgetting my sunglasses yesterday, I ended up with truly horrendous Migraine attack that began during the evening. Triptans and rescue meds hadn't touched it by midnight, so I went to the closest emergency room for assistance.

Maybe it was a gigantic error to have asked the triage nurse if I could have a cold pack while I waited. Maybe she was just in a bad mood. Whatever the problem was, her response was, "You can wait your turn or you should just take your headache and go home." Being an inventive person, I sent my husband to the vending machine that dispenses cold drinks in cups with ice to bring back two of them. I then dumped the contents of my waterproof cosmetics pouch into my purse, put the ice in the pouch, and used it for an ice bag.

When it was finally my "turn" for triage, the first words out of the nurse's mouth were, "Just where did you get that? I told you to wait your turn." Sorry, but what a bitch! Compassionate health care professional, my ass. At that point, my husband interjected that I had filled my cosmetics pouch with ice from soft drinks that he purchased from their vending machine. Did the nurse apologize? No. She actually snorted! She then went on to say that a headache wasn't an emergency, she didn't know why I was there taking up valuable time, and that if I thought anyone was going to be foolish enough to give me narcotics, I was sadly mistaken.

Enough! I very calmly and quietly explained to this intellectually, emotionally, and morally challenged so-called nurse that I work for a prominent Migraine and headache specialist and would, in fact refuse narcotics if they were ordered. I told her that I had never encountered such unprofessional, uncaring, and rude behavior from a nurse in my life and that she owed me an apology. Her reply was, "I owe you nothing, and if your attitude does not change, you will not be seen in this emergency department." My husband ignored her, but told he that if I didn't file a JCAHO complaint, he would. At that point, this "nurse" sent me back to the waiting room to "wait my turn."

Unbelievably, the doctor was as bad if not worse. I was lying on the bed in the exam room when he came in, and he informed me that I would sit up if I expected him to treat me. Then he said that he didn't see any reason for me to be there, that since I work for doctor, I should have just waited until I went to work and let him treat me. At that point, I'd had enough. I'd had more than enough. I'd been trying very hard not to vomit since arriving at the hospital. Well! I wasn't going to try any longer. I winked at my husband who tried valliantly not to grin, sat up as the doctor had ordered, and just waited for him to shine his penlight in my eyes. Have you anticipated what happened next? As soon as he was in my face with his little penlight, I vomited. all over his clothes and shoes. What he said next, I won't even recount here. Let it suffice to say, he could have been stellar had he done a residency in profanity. When he finished his little tirade, he offered me an Imitrex injection despite the fact that I'd already taken two doses of Maxalt. Told me it was Imitrex or nothing. My husband told him to get my discharge orders and to be sure that his full name and license number were on them. The fool actually asked why. My husband simply replied, "because you're required to do so if we so request, and that's all you need to know. If you're too stupid to realize what you've done here, I'm not going to waste time explaining things you should have learned in med school while my wife lies here in pain and untreated." My hero!

Driving was not a good idea this morning, so my husband took me to work. My boss took one look at me and invited me into his office. While I was telling him what had transpired in the ER, he gave me some Reglan for nausea and asked a nurse to set up IV infusion of mag sulfate to stop the Migraine. After that, a coworker drove me home.

I don't really expect much to come of it, but my husband has already filed a complaint with JCAHO and requested an appointment with the hospital administrator. So, even though I'd like to be a bigger person, I really hope both that doctor and that nurse are struck with the worst headaches of their lives!

The Nourishing Meme

Surfing around today, I came across a blog entry on Teri Robert's blogs, About Headaches and Migraine and Putting Our Heads Together. It was called, as this one is, "The Nourishing Meme." It's so lovely and thought provoking that I want to share it with you.

A meme, according to Webster is an idea, behavior, style, or usage that spreads from person to person within a culture." According to Wikipedia, the term meme "coined in 1976 by Richard Dawkins, refers to a unit of cultural information that can be transmitted from one mind to another. Dawkins said, Examples of memes are tunes, catch-phrases, clothes fashions, ways of making pots or of building arches. A meme propagates itself as a unit of cultural evolution analogous in many ways to the gene (the unit of genetic information)."

This meme asks five questions. Here are those questions and my answers:

1. What is the most nourishing thing you frequently do for yourself?
   Light incense, lie back on the floor, and do relaxation exercises or visualization.


2. For your health, what will you never compromise on?
   Medications and medical care. No matter how tight money is, I keep some put back to pay for medications and doctors' appointments.


3. Where do you get most of your health information?
   Online, from books, and from my doctor.


4. What single whole food or supplement has turned your health around?
   Water!


5. What is your favorite natural therapy?
   Torn between aromatherapy and flower essences.

Now, for the challenge. I invite Droolie of "droolie's corner o' the planet" and Deborah of "weathering the migraine storms" to pass on this meme on your blogs. Tag! You're it. ;-)

Ours is an invisible illness

I'd never thought about it this way before, but Migraines are invisible. What got me thinking about this was the About.com newsletter I received in my email this morning. There was a link in it to an article about National Invisible Chronic Illness Awareness Week, which is this week. I'm going to put a snippet of it here and hope you'll follow the link to read the rest. It's really interesting. Actually part of it is pretty startling!

"Our Illnesses May Be Invisible, but They're Very Real"
by Teri Robert at About.com Headaches / Migraine

Living with chronic headaches and Migraine disease, we have something in common with 96% of people who live with a chronic illness -- our illness is invisible. That doesn't make it any less real, painful, or debilitating.

• Nearly 1 in 2 Americans (133 million) has a chronic condition.
• 96% of them live with an illness that is invisible.
• The divorce rate among the chronically ill is over 75%.
• Studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

Please go to About.com to read the rest of this article.

By the way, the About.com newsletter is fantastic, and it's free!

Shalom!

With sympathy to the family of Levi Ringer

Levi Ringer started complaining of headaches in March. His mother took him to the hospital, where he was kept overnight, diagnosed with Migraines, and discharged with Migraine medications. In April, she took him back to the hospital because he was experienceing dizzy spells; and in June, she took him back with a stiff neck.

Mrs. Ringer says that the doctors refused to order an imaging study until June when she became insistent. Then she was told there was a three-month waiting list.

When a brain scan was finally performed on July 20, it was discovered that he had a brain tumor, which by that time had grown enough to have started down his spine. He was rushed into emergency surgery that failed to save his life. Levi died due to respiratory failure on August 29.

Rest in peace, Levi. My sympathy goes to his mother. My contempt to his doctors.

from "Brain tumor boy's mum attacks doctors." Leedstoday Evening Post.

"Ya gotta love it!" Really?

Last evening, I sat down to watch a couple of television programs I'd recorded. While watching one of them I encountered the now infamous "Head On, apply it directly to your forehead" commercial. Let's just say it's impossible to fast forward through that commercial quickly enough to suit me. A friend who was watching with me said, "Ya gotta love it! It's so obnoxious that it definitely grabs your attention." Oh, really? It's way beyond obnoxious, and I don't "gotta love it." In fact, any thoughts I may have had in my head about trying Head On have now been pushed out by loathing for that commercial. UGH!

Shalom!

Stress a Migraine trigger? What's the deal?

There are some issues, even in medicine, on which even the best of the best disagree.Seldom are such issues black and white. There are often points to support both sides. The issue of whether or not stress is a Migraine trigger is one of those.

For much of my life, I was told to relax, that stress was bringing on my Migraines. Consulting my Migraine journal, I could never make sense of that statement because I could find no correlation between times of stress and my Migraine patterns. Of course, some of the people who told me to relax, were also the same uniformed, patronizing fools who told me to have a hysterectomy to stop my Migraines.

What disturbs me about the disagreement over stress as a Migraine trigger is the way in which the NHF (National Headache Foundation) chose fairly recently to express their disagreement with those who say stress is not a trigger. Two of the top Migraine sites on the Internet, MAGNUM and About Headaches / Migraine, have had Migraine myths on their sites for years, literally. The NHF has not and still does not. However, on July 31, the issued a press release, "Dispelling Migraine Myths From Fact." Their stated myth #2 is, "Migraines are not triggered by stress." This statement is directly contradictory to the myth sections on both the MAGNUM and About sites.

You may wonder why this disturbs me. Allow me to explain. By issuing a press release in this fashion, the NHF prompted a series of articles all over the Internet. These articles, for the most part, simply regurgitated the press release, accepting everything in it as undisputed fact. So, who in the hell are we supposed to believe? MAGNUM has nothing on their site addressing the NHF release. On About.com, I found this:

Is stress a Migraine trigger or not?

Recently, the National Headache Foundation (NHF) sent out a press release regarding myths about Migraine. One of their myths was, "Stress is not a Migraine trigger." In other words, they're saying that stress is a Migraine trigger.

MAGNUM, the International Headache Society (IHS), and I disagree with that statement. In their International Classification of Headache Disorders, 2nd Edition, the IHS actually moved stress from their list of "triggering factors" to their list of "aggravating factors."

You can read the rest of this article here.
What I respect about Mrs. Robert's article is found in this question and answer:

So, is the NHF wrong?
I wouldn't say that they're wrong, just that we have a difference in philosophies. That's not always bad, and this isn't a black-and-white issue. As long as questions are asked and a healthy dialogue continues, differences in opinion and philosophy can spark very educational exchanges.

That is a reasonable, respectful, and classy response. It's also one that tends to make me look at things more from her point of view than that of the NHF. Perhaps Ms. Simons at the NHF should give this some consideration.

Shalom!

Welcome to my Migrainous Wanderings!

Hello. How are you?

My name is Abi, and I'm a Migraineur. Saying that always reminds me of watching television programs or movies with scenes from AA meetings. I actually find that somewhat appropriate since the Serenity Prayer has helped me through more than one long night with a Migraine. BTW, if you're wondering why I capitalize Migraine, it's a habit I picked up from Teri Robert. I noticed that she always capitalizes it and emailed to ask her. She told me:

"I capitalize Migraine as an advocacy issue. Too many people still believe that Migraines are "just bad headaches" when, in reality, Migraine is a potentially debilitating genetic neurological disease. By capitalizing Migraine and various forms of the word, we set it apart and, hopefully, cause people to question and come to a new awareness of Migraine as a disease."

Teri has taught me more about Migraine disease and given me more hope than anyone else in my 35 years of trying to cope with these blasted attacks.

That brings me to the point of this blog. For several years now, I've been wandering the Internet, exploring sited about Migraines. Yes, I've found some great ones, but I've also found some that are just plain horrific. The horrific sites fall into several categories:

• Inaccurate sites - probably because the people running them are just misinformed themselves.
• Out-of-date sites - run by someone who has read old, old books or sometimes by doctors who went to medical school before much was known about Migraine and has never taken the time to learn anything new.
• "Idiot" sites - These sites are run by people who think we're idiots or they are. They promise a cure, but there isn't a cure for Migraine yet. When I see "cure," I click off a site immediately.
• Exaggerated sites for products - The products on some of these sites might actually be helpful, but the people running them felt it necessary, for some inexplicable reason, to exaggerate their claims or say they're affiliated with or endorsed by a reputable organization. Even if their products are great, I won't buy from these sites because I feel like they're lying to us. Products should stand on the truth.
• Other product sites - Then there are the sites where the people running them make a case based on their own "science" that they can't prove. Some of these people probably believe what they're saying. After all, their products help some people, right? Well, remember this -- In clinical trials, even the placebo helps about 30-35% of people.

In this blog, I'm going to write about the sites I've found, my Migraines, what's helped me, and more. Please join me in my wanderings.

Shalom!