what's going on in my head
Apr. 16th, 2026 06:42 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
adrian_turtleThe short version of the story is that last month, I saw a new neurologist.* They want to do some tests to diagnose my seizures more accurately. If all goes well, I may end up on better meds with fewer side effects (less crushing depression, clearer thinking, better memory) and better seizure control without needing to be careful to avoid flashing lights (so I can safely go out at night, even on Comm Ave.) If it goes less well, I will end up right where I am now, after a very uncomfortable week with glue in my hair.
The Epilepsy Monitoring Unit is more daunting than the hourlong EEGs I've had at various times since I was 8. It would be a week or so in the hospital with electrodes glued to my head the whole time. (Not only can't shower, but can't even comb my hair.) It would mean tapering off my current anti-seizure meds, going without sleep on alternate nights, and doing things like hyperventilating and looking at strobes when they tell me to. They want to see exactly what happens when I have seizures or auras, and in what part of my brain. The resident epileptologist I talked to for more than an hour had useful things to say about the possibility that I might have localized focal seizures that would respond better to a different class of meds. And it would be safer to experiment with them in the EMU.
If we are doing these tests to find better meds with fewer side effects, that would be great! That could be worth a lot of discomfort. But the attending doctor who came in for the last few minutes of the appointment sees this study as a preliminary investigation for surgery...no. Definitely not. I do not want surgery. He told me I didn't need to decide about surgery yet, but I have decided and I resent needing to defend that decision. (This made it into his clinical notes as “patient is not excited about surgery.” I need to be more assertive.) Not too assertive, of course. I am a fat middle-aged woman with an illness that is literally all in my head, and it’s important not to come across as hysterical.
* My wonderful neurologist on Cambridge respected that I had seizures, migraines, AND depression, and would rather put up with a few absence seizures than make the depression too severe. He retired in 2021, and his practice replaced him with someone I didn’t like. Then with someone incompetent. Then with someone who said she didn’t do epilepsy and I should try consulting someone downtown. I went downtown, where the dispatcher asked what my primary complaint was? As I was having a quick absence seizure every 2-3 months, and a migraine every 2-3 days, I complained about the latter. The dispatcher sent me to a headache specialist, that I waited 8 months to see.
I asked the headache specialist about my seizures. (Some of my anti-seizure meds also prevent migraines.) He said he doesn’t do epilepsy; I should see a different neurologist. So I waited a few more months. To sum up: I am not in a position to go back and ask my old doctor if I am dubious about what this one recommends. And my PCP is kind but not useful for actual medical advice.
The Epilepsy Monitoring Unit is more daunting than the hourlong EEGs I've had at various times since I was 8. It would be a week or so in the hospital with electrodes glued to my head the whole time. (Not only can't shower, but can't even comb my hair.) It would mean tapering off my current anti-seizure meds, going without sleep on alternate nights, and doing things like hyperventilating and looking at strobes when they tell me to. They want to see exactly what happens when I have seizures or auras, and in what part of my brain. The resident epileptologist I talked to for more than an hour had useful things to say about the possibility that I might have localized focal seizures that would respond better to a different class of meds. And it would be safer to experiment with them in the EMU.
If we are doing these tests to find better meds with fewer side effects, that would be great! That could be worth a lot of discomfort. But the attending doctor who came in for the last few minutes of the appointment sees this study as a preliminary investigation for surgery...no. Definitely not. I do not want surgery. He told me I didn't need to decide about surgery yet, but I have decided and I resent needing to defend that decision. (This made it into his clinical notes as “patient is not excited about surgery.” I need to be more assertive.) Not too assertive, of course. I am a fat middle-aged woman with an illness that is literally all in my head, and it’s important not to come across as hysterical.
* My wonderful neurologist on Cambridge respected that I had seizures, migraines, AND depression, and would rather put up with a few absence seizures than make the depression too severe. He retired in 2021, and his practice replaced him with someone I didn’t like. Then with someone incompetent. Then with someone who said she didn’t do epilepsy and I should try consulting someone downtown. I went downtown, where the dispatcher asked what my primary complaint was? As I was having a quick absence seizure every 2-3 months, and a migraine every 2-3 days, I complained about the latter. The dispatcher sent me to a headache specialist, that I waited 8 months to see.
I asked the headache specialist about my seizures. (Some of my anti-seizure meds also prevent migraines.) He said he doesn’t do epilepsy; I should see a different neurologist. So I waited a few more months. To sum up: I am not in a position to go back and ask my old doctor if I am dubious about what this one recommends. And my PCP is kind but not useful for actual medical advice.
no subject
Date: 2026-04-17 08:37 am (UTC)