the message

Posted on January 18th, 2010 by Scraps.
Categories: Recovery, Stuff.

Tomorrow it's the important doctor's appointment, with my neurologist. I've careful written down the message:

"So I tried Keppra another six weeks, with Gabapentin gradually tailing off until it was done. It’s better without Gabapentin, but the Keppra is still bad.

"It’s still, all the time, twenty-four hours a day, dazed, dull, sluggish, and a little bit stupid. I hate it, all the time. I can’t find the words. It’s been two months since the seizures; I was improving, but now I’m not – if anything, I have regressed -- and I am frustrated.

"I have a theory. I think Keppra is all right if the stroke didn’t affect the language part of the brain (or not much). Maybe the medication is making me dull and dazed, but theoretically it’s fine because my language is still fine.

"But it’s not fine; my language is very much affected. I need that part of the brain. I value that part, so much so that I can’t do without. Please, can we try something else?"


Cory DOctorow

Comment on January 19th, 2010.

I think that this is a really commendable piece of medical advocacy that you can be proud of, Scraps.

A suggestion: if you're not already doing so, keep a time-stamped log of how you feel and what medications and therapy you're undergoing. It will be useful for this sort of situation, and also for your own sense of progress (our own recollections of our health and well-being over time are impressionistic and without documentation are hard to trust).

One data-point for you from an outside observer's point of view: I have been reading your reports on your recovery religiously and have also spoken with you on the phone at a pretty low moment, and in all cases, I've found you to be very sharp, present, and coherent. From the inside it may feel like you're thinking and communicating through gauze, but from where I'm sitting, you're doing very, very well.


Comment on January 19th, 2010.

I want to reinforce Cory's comment. You may not always be able to find the word you need right away, but you present yourself as very clear and coherent, and you show a lot of inventiveness in making your desired point.


Comment on January 20th, 2010.

Thank you, guys.

Well, I saw him, and it's complicated. I still have Keppra. My neurologist wants a EEG, and a tape-under-head thingy again (I have to go to hospital overnight). Just to be sure. That's probably going to take at least a week. Then we’ll talk again.

But: the thing is, all of the meds that address the seizure issue, I’m afraid they are ALL dull and sluggish. I'm probably going to have to get used to it, slowly. I’m calm; probably because I suspected it.


Comment on February 13th, 2010.

I wonder if an MRI would help. If your neurologist could find the cause of the seizures, there might be a cure, instead of just treating the symptom with anticonvulsants.

There may also be nootropic -- smart drugs -- that might help stimulate your mind while on Keppra.

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