Tuesday, September 26, 2006

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!

Saturday, September 23, 2006

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?

  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. ;-)

Tuesday, September 12, 2006

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!


Sunday, September 10, 2006

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!


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.


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.