11:12pm May 5, 2013

Okay so more about this migraine gastroparesis thing.

There’s a possibility that the nausea and vomiting experienced during migraines, may be due to a temporary gastroparesis. It comes on during the migraine attack, then it goes away again. So for the duration of the migraine, the stomach empties more slowly, and that causes all manner of stomach upset.

Then there’s this other thing. It’s totally unrelated. It’s called chronic gastroparesis. Your stomach is slowed down all the time. Maybe sometimes more than others, but it never goes at a normal speed. It ranges from mild to severe and has a wide range of causes. Migraines are not one of them.

I have gastroparesis, and other motility problems. Not only does my stomach go slow, so does my esophagus, my large intestine, and quite probably my small intestine. It has been getting worse over a period of longer than ten years at minimum. It is probably related to a neuromuscular condition inherited from my mother.

It has been chronic and progressive. Over time, I’ve lost the ability to eat solid foods, and finally lost the ability to eat at all. The most I can manage is a few sips of ginger ale, and not always. Sometimes just the amount of bile and stomach acid building up in my stomach without draining properly, is enough to cause nausea and vomiting. This has resulted in gas which has resulted in stomach contents going up my esophagus which has resulted in terrible recurring aspiration pneumonia. I also have lost the ability to maintain even a liquid diet enough to get adequate nutrition. I now use a GJ feeding tube to avoid both of those problems, and for now it’s successful.

The only similarity between what I’m going through now, and what I used to go through temporarily during migraines, is a slow stomach. That’s all. Having a migraine and having your stomach slow down for the duration, is not the same as having a constant, chronic, longstanding, progressive condition that has threatened your life.

A friend just said it’s like comparing a cold to tuberculosis because they both involve coughing.

Yet that’s exactly what my neurologist has done. He’s seen the word gastroparesis used to describe the stomach slowing during migraines. And that may be an accurate word. But it is not the same as chronic progressive gastroparesis. It doesn’t have the same causes. And chronic progressive gastroparesis sure as hell doesn’t come from migraines.

Back to the cold and tuberculosis comparison. Both involve coughing.

So he’s doing the equivalent of saying “tuberculosis is caused by colds, they both have coughing”.

What disturbs me about this is that there are plenty of children who could see the difference between a temporary thing caused by a migraine, and a permanent progressive condition with a variety of other neurological causes. And this guy refuses to grasp the difference. I can’t figure out what is wrong with him. I mean he got through med school, and yet he’s focusing on keywords and not grasping the huge differences.

I’m pretty sure he thinks my muscle weakness is actually just fatigue brought on by constant migraines. I do have fatigue, probably not caused by migraines. I also have specific muscle weakness. Both. It’s not hard to understand either. He told me with this air of total certainty, that the pyridostigmine wouldn’t work, and then it has worked. I mean I knew he was probably wrong, but when someone in authority acts that certain of something, it brings me up short. But now I keep looking at the conclusions he’s leaped to and it’s a serious WTF moment.

Especially the thing about how gastroparesis is really just caused by migraines. Migraines cause very temporary gastroparesis. That’s not the same as gastroparesis (the chronic disease) is caused by migraines. He told me to see a colleague of his who is very interested in studying gastroparesis. I am thinking I ought to stay the hell away from him. Because if this guy looks up to him, he can’t be that good. Ugh. He only sees what he wants to see.

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