State of the Mrissa Report: after the EEG

[mrissa]

So. My brain is normal. Stop laughing! I have medical confirmation!

Okay, he did not actually say normal, he said within normal parameters. Still: no seizure disorder or other anomalous brain activity recorded in the sleep-deprived EEG.

This is a good thing.

We have a plan. This, too, is a good thing. The plan is:
1) Thorough work-up at competent dentist
2) Return to ENT for more in-depth test as discussed with Dr. porphyrin, who is a Hero of the Revolution, a Flying Squirrel Diva of the Jovian Moons, and any other honor we can dig up around here.
3) See an additional, more specific neurological clinic that may be able to rule out more funkiness because of their greater experience with funkiness.

See what a plan it is? It is a plan. It does not involve me taking mind-altering medication for a condition I am not on record as having. And why does it not? Because I was polite but firm with the doctor and made him consider other options. Because I am well enough and of a personality type to stand up for myself. It bothers me that this was necessary, because not everybody is that well, and not everybody has that personality. I liked my first neurologist better. There's nothing wrong with this guy. I just liked the other one better. He (that is, the missed first neurologist) looked like autopope (in hair mode, not bald mode) if autopope had been Quebecois-Minnesotan. Also he listened to me and paid attention to what I said without me having to go into Marissa Lingen, Girl Physicist, geek smackdown mode. I can do ex-physicist smackdown mode. It's just wearing.

(Gosh. How many of my medical professionals can remind me of science fiction writers? My gp could be matociquala's sister. This is not a bad thing, though.)

More specifics are available on e-mail for those of you who want to know things like "what kind of more specific neurological clinic?" But this is as much information as I care to give on lj for the moment.

I am -- as I have been the past several days -- rather tired, and I intend to spend much of the day doing stressful things like watching "Red Dwarf" and poking novels with veeeeeery long sticks and reading a Spenser novel borrowed from dd_b.

Comments

[dreamshark.livejournal.com]

From my second-hand experience with seizure disorders (2 siblings and one spouse) I have learned that it is sometimes possible to diagnose disorders by medication that don't show up on lab tests. By all means, pursue the more specialized testing if that seems likely to be helpful, but just in case it turns up nothing and you continue to have symptoms, I just wanted to mention this.

Although I wouldn't want to take Dilantin long-term unless I really needed it, it is not a particularly dangerous drug and the side effects are rarely serious. If you tried it for a month or two and the dysosmia immediately cleared up, that would tell you that it was probably a minor seizure disorder. You could then decide whether you wanted to continue with medication, find a different solution or live with the problem.

[mrissa.livejournal.com]

The main thing about this illness that messes with my life is the fatigue. Dilantin has major side effects of making people sleepy and/or less alert. It also can mess with people with blood sugar problems (I'm hypoglycemic), can make oral contraceptives less effective, and can make people who are prone to it dizzy (I am prone to it).

If my taste/smell disturbances were behaving at all like seizures, we might decide to get around all this. Might. But they aren't behaving like seizures in any way except that they're short on explanations for why I'm having them at all. So taking a medication that reproduces the major current problem (the fatigue) as a side effect -- plus has other side effects that more directly relate to concerns in my life and health -- just doesn't seem like a good idea right now. We may get to the point where we have more reason to try it, but we aren't at that point now.

[dreamshark.livejournal.com]

Your reasons are good ones. I'm not trying to tell you what to do, just provide a little additional information.

Tiny localized seizures can cause disruption of any sense, which is why I guessed that the dysosmia was the symptom that made the doctor suggest medication. But if that's not the main problem and the side effects of the meds would aggravate the bigger problems, that would clearly be a silly thing to try. I don't blame you for getting annoyed that your neurologist didn't seem to be listening to you. Congratulations on making sure that he started.