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.

Notice a certain smell

Wed, 04/22/2020 - 20:42
Has any one ever notice that a person who has just had seizure or during a Seizure has a certain smell about them. My son has epilepsy and I am continually smelling a certain smell just after his seizures. Was wondering if anybody else has experience this.

Comments

Hi. I’m a person with

Submitted by Patriotrehab on Thu, 2020-04-23 - 02:03
Hi. I’m a person with epilepsy and I just asked my husband if he’s ever noticed anything like that in the twenty years that I’ve had epilepsy and he said he hasn’t. I do wonder though if this is something unique and specific to your son or maybe something more common with his age or gender. Perhaps he is secreting a hormone, sweat gland, or something else  because the brain is activating that part during the seizure. As one of my epilepsy specialists said to me one time, whatever the brain can do normally, it can also do abnormally. That’s how he explained it to me when I told him about my arm going numb to the point of intolerable pain for a couple of minutes as one of my seizure types, another seizure type where I hear city sounds or music that sounds like it’s coming from a car radio, or where I smell a bad smell that isn’t there. I definitely think it’s important that you share your observation with his doctor because it could provide an important clue about his seizures that they don’t already know or it may not be significant because of the type of seizures he has. 

Hi,Thank you for posting. As

Submitted by Anonymous on Thu, 2020-04-23 - 08:33
Hi,Thank you for posting. As Gianna mentioned her comment it’s important that you're discussing this further with your son’s healthcare team and if he experiences any changes in changes in seizure types/ frequency, side effects, symptoms, mood or behaviors, to help determine what individual treatment plan may be best for him. You all may want to consider documenting or tracking his seizures and other symptoms you may notice, by using a diary or a journal. My Seizure Diary, can be used to organize his health issues, manage medications, develop seizure response plans, and more, which can be shared with members of his healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary .It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources.1-800-332-1000, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

I wanted to respond to you

Submitted by Patriotrehab on Thu, 2020-04-23 - 20:33
I wanted to respond to you again because I decided to do a Google search about your question and I found this really interesting article that I think might help you. It basically says that Seizure Alert Dogs can detect a smell, so I think you may be on your something and perhaps a Seizure Alert Dog could even give your son a warning. https://www.scientificamerican.com/article/dogs-detect-the-scent-of-seizures/ I’m sure there’s more information out there on the Internet, but this was just to give you a place to start.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.