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Saturday, December 10, 2005

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"Erich Kastner's, (1899-1974), children's book "Anna Louise and Anton" (1931) includes a definition of migraine which became a famous saying in Germany: "Migraine are headaches, even if you don't have any".

It's funny how things get turned around. Take this quote, for instance, this writer was talking about a type of migraine where you get the aura, but no head pain. The only problem is that the mainstream medical community took that to mean that you have the migraine because it's convenient for you to have one and that turns it into a psychological syndrome rather than the clinical disease that it actually is. It makes it easy for people to put the blame on the victim rather than have to make the effort to take action to prevent the pain or rescue the patient from the pain.

Kastner wasn't trying to say that I'm saying I have a migraine, because I want the attention, or don't want to do something that I'm supposed to do. Anyone who has children who have migraines knows that the last thing your poor kid wants to do is spend the day worshipping the porcelain god and laying down in bed with an icepack on their heads when all their friends are at the mall or outside playing ball.

Rather, Kastner was refering to a kind of migraine characterized by a lack of pain and just having the aura. I've met people online with this kind of migraine. It's really odd. I get both aura and migraine and I can only imagine how disconcerting it would be to only have the aura and never get the pain afterward. I'd have to say that it would be just about as bad as if they got the pain, too, because the aura beforehand is such an uncomfortable experience. You can read more about the kinds of symptoms you get with an aura here.

Acephalgic Migraine shouldn't be taken lightly, but it is. I mean, if there's no pain, then why have it treated? Just tough it out and get through it, right? But, it can be serious in that patients with this kind of migraine can completely lose their field of vision. I've also learned that this kind of migraine is sometimes diagnosed as occular migraine when really it might be an occipital migraine and there is a difference between the two. (I found that fact to be enlightening, because I was diagnosed with occular migraines.)

Often, patients are misdiagnosed, because the patient doesn't know how to describe their migraine accurately to the physician and the physician doesn't direct the patient on how to do that. So, if you experience this phenomenon, make an appointment to get the right diagnosis, because if it's left untreated, you could lose your field of vision. It's not something that you want to let go on, untreated and undiagnosed, for too long.

If I were more presumptious, I'd say that I wished I could get acephalgic migraines, instead of being in chronic migraine pain, but I've learned not to wish for anyone else's problems. They look good from where I sit, but if you talk to the people who actually experience this type of migraine, you learn that it's not a walk in the park. The grass never is greener on the other side of the fence, it just looks that way. They suffer every bit as much, just in a different way. It's still debilitating and, I believe, more frightening than having the head pain that accompanies the aura in case of migraine. I think it is scarier, because when it happens, it's out of the blue. When we have a migraine, most of us can say we knew it was coming, because we had an aura for so many hours or days beforehand. But, if aura IS the disease, then you've got no warning and all of a sudden you're sitting at a stop light and can't remember where you are or why you're there.

Acephalgic migraneurs can experience a variety of symptoms or just one or two of them, but from what I've been told by other's with this type of migraine, they've experienced the inability to speak; one side of their face feels "frozen"; temporary paralysis; inability to organize a thought; confusion and memory loss; as well as the usual symptoms of aura: nausea, vomitting, diarhea, mood change/irritability, the Alice in Wonderland Syndrome and a host of other symptoms. And this can last anywhere from an hour to a few days, depending on the person, just like typical migraines. I'm not sure that that would be better than what I experience and may even be worse. At least when I'm in pain I know who I am and where I am. I couldn't imagine getting stuck in the middle of nowhere, not knowing why I'm there, or being unable to move or speak for hours. I think that that might be worse.

Whether or not you experience head pain, you're still having a migraine if you experience aura and it's just as important to get diagnosed and treated for this disease. Migraine abortives are made for this very situation. People with the head pain are told to take them as soon as they get an aura in order to cut the pain off before it even begins. It's better to get rid of it sooner than later.

102 Comments:

At 9:36 PM, Anonymous Hsien Lei said...

Jessica,

Hope you are well. Thanks for leaving a comment at Genetics and Health yesterday. Your blog fascinates me too and it's the featured blog of the week.

 
At 10:04 PM, Anonymous Eleanor said...

This isn't related to your post, I just want comment that I am really impressed by your courage. When I'd had CDH for the same length of time I was too ashamed, self-blaming and in denial to speak so publically about what was happening to me. It took me many years to get to the point where I could even begin the process of accepting the condition, I was too busy running around like a headless chicken trying to find a cure for whatever it was. (I thought I had some kind of rare mystery disease and all I had to do was find out what it was.) What you are doing is really important.

 
At 11:08 PM, Blogger Jessica said...

Eleanor, you're too sweet. Thank you for your kind comments. But, of course, I have to be honest. When I first started blogging back in January, I'd never even heard of a blog before. Imagine my surprise when I found out that anyone could read whatever I wrote! lol But, I have to do it, because it helps me maintain the little sanity that I have left. Keeping it all bottled up was going to end up getting me in hot water. I could just see myself going postal, if I didn't get it out, and, at the time, no one was listening when I tried to talk about it. So, there you have it. The rest of the story. As I say, I'm no hero and not courageous. I'm just fed up with not getting a fair shake and have to say so, or else I'd go berserk! lol Thanks for your kind words, though. It is encouraging to know that this blog is actually helping someone, or at least giving a voice to our frustrations, or so I hope. :)

 
At 9:57 PM, Anonymous Eleanor said...

Sometimes I think it takes courage just to keep on going with a condition like this. To keep fighting, keep looking for ways to find relief. At the same time I feel like I have no choice. What else would I be doing?

Blogging is a new thing for me, I might have done it years ago (a lot of my friends have had blogs for ages) but I was scared of being judged by strangers! Now I think if they don't get it they'll probably just go somewhere else, read something they can relate to.

And at some point I guess you have to face the fact that there are going to be people in the world who don't get it. That doesn't mean I can't know in my heart that I am strong, this disease doesn't mean I am some sort of weak, defective person! I felt that way for a long time, though I never applied that judgement to others with similar problems. One of the worst kinds of double standard.

 
At 6:55 AM, Blogger Jennifer said...

Thanks for your wonderful support of those of us with acephalgic migraine!!

I feel very fortunate that I don't experience migraine pain (I did as a kid, but haven't had problems with it since then), but I also feel fortunate that my acephalgic auras are not visual (they come in the form of paresthesias, or tingling).

Despite being grateful about my lack of headache pain and visual auras, I can attest to what a big ol’ nuisance it is to have migraines that come in the form of tingling. It has plagued me since I was a kid. Initially it began in my feet, and it became so severe that I had to stop dance lessons. Later it gravitated to my head and fingertips, with occasional side jaunts to the tip of my nose, my earlobes, the roof of my mouth, my knees...anywhere the tingling felt like striking. By the time I was 10, it was nearly constant, so my neurologist started me on a course of Inderal, with the dosage going higher and higher before I got any relief. Until the age of 18 I was on a higher dose of medicine than most adults ever take.

I got sick of the side effects and decided to drop the medicine when I turned 18. Fortunately the worst of the tingling had subsided by then, and I was able to survive without meds. Now, at age 32, it only strikes occasionally, almost always in my head or fingertips. For this I am extremely grateful. But the when it DOES strike, I feel like bashing my head against a wall in frustration.

Putting pressure on the tingling area inexplicably brings relief. My coworkers all know that if they see me in my cubicle with my hand attached to my head at an awkward position, it's because a section of my head is tingling and I'm pressing on it to make it temporarily stop. If the tingling is in a fingertip, tightly wrapping scotch tape around the offending area sometimes help, because of the pressure it creates. Depending on where my head is tingling, sometimes wearing a tight baseball cap will help, if the rim of the cap goes directly across the tingling area. I'm always looking for quick solutions to keep the tingling at bay, from scotch tape to hot pepper cream.

Thanks again for your excellent blog!

 
At 7:48 PM, Anonymous Anonymous said...

Jessica, Thanks for providing some awareness of the "migraine without headache" experience. My main aura symptom is burning, redness, and tingling that moves around on my skin. In addition it moves around on my lips and in my mouth and even in my digestive tract where it results in burning, bloating, and vomiting. I experience forgetfulness and lose my train of thought. I was recently diagnosed with migraine. One of the things that tipped the doctor off to migraine was that a major trigger was cold wet weather. I had no idea of the significance of this, so I would encourage anyone who thinks they may be experiencing aura without the headache to keep a careful diary to show their neurologist. Now that I am on the right meds I am experiencing some of the first dependable relief in my life. To others reading this: If you have migraine without headache don't lose heart! This is a real condition! You are not crazy! Keep on pestering your doctor till you get the help you need.

 
At 3:09 AM, Anonymous Anonymous said...

Thanks Jessica,

I have had a "migraine without the headache" for the past 5 days, AFTER I had a migraine for a week. Still feel really dizzy but i hope that it doens't last too much longer. I have anti-nausea tablets which have been helping, along with disprin. Never knew this existed, but boy does it suck!

Thanks for the insight...

 
At 11:05 AM, Anonymous Anonymous said...

Wonderful post Jessica... I just spent the last 8 months getting run through every specialist imaginable before finally seeing the neurologist. Persistent nausea and aura for many months can leave you feeling pretty terrible even without the head pain. I've missed a ton of work, had to count on others for simple tasks and felt bad enough for long enough that I was ready to end it. Thankfully the doc gave me the happy pills (for the attacks) and I'm doing better now. The biggest issue for me was the lack of other easy to recognize symptoms. Hopefully primary care doctors can stay aware and educated about this.

 
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