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When describing your seizures to your doctor...
Sat, 09/29/2007 - 13:16Do use more technical terms, describing them as absence, tonic-clonic, etc and so forth seizures, or do you just try and describe them or give the description other people have given you, "You looked like a fish out of water flopping all over the place", and hope that's given them a clue?
Personally I'm thinking of cornering my neurologist and telling him my understanding of each type of seizures and what I think mine are, I'm tired of sounding idiotic while trying to describe these things, esp. since they're showing more and more of a pattern that makes me think the absence and partial seizures were never controlled to begin with and they're triggering secondary generalized seizures, rather than starting out as tonic-clonics to begin with, but I have had doctors in other specialties not appreciate it when patients use technical terms.
So, how do you talk to your neurologist?
Comments
Re: When describing your seizures to your doctor...
Submitted by karolina on Sat, 2007-09-29 - 15:09
I had a doctor tell me not to use medical or technical terms when desribing my symptoms. They don't want you to come to your own conclusion on what's going on with you. They want to do that part. Try to just be as descriptive as possible and leave out any speculation or opinions about it. Just stick to the facts.
Re: Re: When describing your seizures to your doctor...
Submitted by Gina Marie on Sat, 2007-09-29 - 23:33
See I've had doctors tell me that too, and I feel that unless I'm a brand spanking new patient and you're telling me about a new condition then that's ok. But if it's condition I've had for awhile now, telling me to stick to the facts without using technical or medical terms is insulting my intelligence. Especially when those technical/medical terms describe what's going on much better than the laymen terms I might otherwise use. I have a medical background, I'm used to talking to various medical professionals. It's not diagnosing myself to refer to a seizure type by it's technical term. They've diagnosed me, and I trust that they know, or should know until proven otherwise, what they're doing. If I write things down with what I understand the technical term to be, and what my symptoms are, and ask if that's the seizure type he's referring too, then we all can be on the same page. I'm big on writing things down and charting. Mostly because I don't remember squat these days. And I've found it helps the doctors to understand that I'm not pulling things out of the air or relying on a faulty memory of myself or others. If I'm misunderstanding something then it also gives them a chance to straighten me out, and vice versa. I bring notebooks to my doctors visits, and if I don't understand something I generally don't leave the office until I do, as far as I'm concerned that doctor is my hostage from the moment he enters the exam room or office until I'm satisfied that I understand what's going on. Well, hostage might be a bad phrase, but you get the point:)
Re: When describing your seizures to your doctor...
Submitted by Anonymous on Sat, 2007-09-29 - 13:35
good points! I think people need to do both - tell the doctor what terms they use and what happens during them using your recall and observations from others. Many times people call events with staring absence or petit mal seizures when in fact they are complex partial or vice versa. Using terms and descriptions may help everyone get on same page..it can make a big difference in how to treat seizures since some meds are geared only for certain seizure types. Epi_help