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New to the site
Tue, 10/16/2018 - 06:07Topic: New to Epilepsy.com
Hello. My name is Aaron and I am 29. My epilepsy did not present itself until I was age 23. Since then, I have had three grand mal seizures with convulsions, two within the last 4 weeks, witnessed by coworkers and my new wife, and have been living in a prison of fear since the first one 6 years ago. I have no idea what to expect, the medications have awful side effects, and to top it off, for a living I service commercial fire alarm Systems, which means I am constantly around loud noises and rapidly flashing light, both triggers. How am I expected to hold a job with this unpredictable beast able to strike at any time without warning? Any tips and advice would be welcome and appreciated. Thank you.
Hi Aaron:So if there is one
Submitted by Jazz101 on Fri, 2018-10-19 - 18:47
Hi Aaron:So if there is one thing that does a job on anybody is something new that seems to have the ability to change so much of the days you are accustomed to. That said, the first step is usually to figure out who you should get in touch with. With Epilepsy, the first step is to find a hospital with pretty good ratings in neurology and neurosurgery. A great source for that information is US News and World Report. They have a category in which they rate hospitals along multiple medical specialties. The link you need to check out is this:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIf you are able to find a hospital with good ratings then call them. Ask for neurology. Or, better yet, find out if the hospital has what's called a "Comprehensive Epilepsy Center." With Epilepsy you want a neurologist who deals with Epilepsy. Some do and some don't. Find out how soon you can set up an appointment. When you do get that appointment, speak with the neurologist about getting a video EEG done. If that isn't possible soon then request a 72-hour ambulatory EEG. That's where they wire you up and send you home with the directions on what to do should you feel any unusual activity. Fridays are the best days to get that set up because you may have the weekend off. In terms of the lights and sound affecting you, find out if there are any particular devices that may help a bit there. Epilepsy is one of those diagnosis that, as frustrating as it may sound, requires patience, patience as you try to get in touch with specialists who may be able to tell you of options, medicine included, that might make a difference. That said, the complexity of the brain requires that you be practical about results, meaning some things might work and some might not. I have tried quite a few medications before looking into surgery as an option. And inasmuch as I did undergo surgery, I still have to remain practical about the brain. As a result I am not going to try doing away with my medication especially given we were unable to remove everything. A tiny area was just too close to speech. The start to anything is usually a challenge Aaron. And at this time this is where you are. Everyone is there in their own areas, be in medical or something else. What's important is that you remain focused on the fact that you are trying to figure out what your best options are. And that starts with a good neurological team and asking a host of questions. Best Regards