Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Sound triggering episodes
Thu, 12/07/2017 - 16:43Topic: Living With Epilepsy - Youth
Hi, for as long as I can remember I've been having these periods of what I call intrusive thoughts, except I'm 100% certain that that is not what it is in even the slightest, so I've now started thinking of them as more of partial seizures after some research. I'm not sure how to explain this though, so I'm just going to do my best and hope I don't sound completely crazy. This is normally how it goes:
I'm listening to music, a song comes on, my entire body freezes , I sweat and shake as if I'm shivering and I get kind of scared. Mentally though it's entirely different, thoughts just run through my mind for as long as the episode lasts; I'd tell you what they are, but I can't ever remember what they are. I hardly hear anything from the "outside world", and when I do, it just sounds like the crazy things going through my head. It's not only music that triggers it, it's basically any sound. After it's over I normally feel rather tired and I get a not-so-painful headache, but it lasts for a really long time (I once had one for 2 days). There is no pattern of when it happens, but normally when I get one I get more in the same day, for example I haven't had one in a few weeks, but I had 3 yesterday. Any input is appreciated thanks.
Hi! I think my younger sister
Submitted by sisterofaseizuresister on Fri, 2018-01-05 - 12:00
Hi! I think my younger sister (she's 17) has this same thing. When she was a baby she had infant shudder syndrome but then she grew out of it. There were random little episodes where she would be carrying something in her hand like a shopping bag and her hand would just stop working and drop the bag or whatever she was holding over and over again. That went away at around age 10, but then she started having startle seizures which could be similar to what you have. Whenever an unexpected loud noise happens like a car horn, a glass dropping, someone jumping out and scaring her or really anything that she wasn't ready for, but when this happens one side of her face freezes, her face goes bright red, her eyes look terrified, her arms go straight and stiff and her legs kick out (especially when she is sitting down.) We thought she just had a large startle reflex and not that it was actual seizures. These started getting worse this past year when I moved to a different country. Then last week she was driving home from the beach with my family (luckily she was not the one driving) and she had her first grand mal seizure. She feels the same tired-ness afterwards as well. Her startle seizures are noticeably less when she's well rested, well hydrated, physically fit and eating good, nourishing foods. I hope this helps!!