September 1, 2004

How I feel today

Today I had to get up early, with no caffeine (a cruel torturous joke if ever there was one). A week ago, I somehow got my dilantin levels way too high, and began having seizures with no auras, the sensory warning signs of an oncoming seizure. I also lost all equilibrium, to the point where not only could I not keep my balance walking, even with a cane, but could not even crawl on my hands and knees without falling over.

I was taken to the ER and admitted. The bloodwork showed that my dilantin levels were not only a little high, but actually toxic. I spent from Monday evening to Saturday afternoon in the hospital, while they waited for my levels to go down. This went very slowly, as for some reason, likely having to do with irritable bowel syndrome, the medication was not breaking down and being eliminated.

To make a long story short, today I had an early morning appointment for an EEG to see if they could find out if I was still having abnormal brain waves, and if the hypothalamus was still hyperstimulated. Ever since I started having the unpredictable seizures, I had not taken my pain medication or my antidepressant because they can lower seizure threshold. So my pain levels have been over the roof, and my mood has not been the best. The doctor did prescribe vicodin for pain, but the thing is, vicodin is only 5 mgs hydrocodone, and 500 mgs acetaminophen. That much acetaminophen is very hard on the liver, kidneys, and digestive tract, and I have found that not only does the acetaminophen do nothing for neurogenic pain (the kind that is mostly generated within the neural pathways, as opposed to idiopathic pain, generated in the tissues in response to trauma), but after only two or three of the four doses a day it upsets my stomach and just makes things worse.

So here I am, just getting caught up on caffeine, pain levels at a 7 on a scale of 1 to 10, and trying to be active enough to recover from all those days on my back. My balance has not returned to normal, and I am still having to stop, close my eyes, and wait out the dizzy graying out.

I have to read through the posts in my support group, as now that I am home and doing better I feel that I have to take up the reins again, if only partially for now. The membership there has come to depend on me to a great extent for research, answering questions, and advice in dealing with doctors who just do not want to or don't have the time to truly educate themselves on FM.

The link to the support group is: .
Tomorrow I will talk a little about how as a man, taught from infancy to be a "man's man", and work through anything, never admitting pain, fatigue, or any physical limitations has had to learn to admit to pain, fatigue, and accept those limitations, and how I have had to learn to say "No, I just can't", when asked to do more than I am able that day. This is one of the primary differences in how men and women both react to the illness and are perceived by others when the FM begins to affect their activity levels.

Until then..


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