Community Forum Archive
New symptomSun, 10/20/2019 - 02:59
Topic: Epilepsy.com Help
My 13 (soon to be 14 year old) son is having hot flashes. He had them prior to his first grand mal / tonic clonic seizure 2 years ago. He's been diagnosed with generalized familial epilepsy, and also has sub-clinical absence seizures. He's had normal MRI, abnormal 24hr EEG, no blood tests. We follow a MAD diet. Has anyone else ever experienced this? The hot flashes - are they related to epilepsy and / or teenage hormones? I can find very little information about this online.
Hi jomileslevet, Thank you
Submitted by Anonymous on Tue, 2019-10-22 - 16:27
Hi jomileslevet, Thank you for posting and we understand your concerns. Treatment varies for each individual, so it’s important that you all continue to follow-up with your son’s healthcare team and to determine what individual treatment plan is best for him and discuss any changes in seizure types, frequency, moods, behaviors, sides effects & symptoms. As Gianna mentioned in her comment, hot flashes could by related to a number of things, so you should talk with your son’s doctor about this. If you believe it’s related to his medication you can read more about side effects here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsYou all may want to consider with your son’s doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary. These tools may be helpful in managing his medication, identifying & tracking seizures, other symptoms, therapies, recognizing triggers and health events that may affect seizures and wellness, which can be shared with his healthcare team. Learn more about seizure alert devices, here: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers It can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents and contact your local Epilepsy Foundation at :https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 email@example.com, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline
I’m a licensed clinical
Submitted by Patriotrehab on Mon, 2019-10-21 - 00:01
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I’m also the mother of a healthy 19 year old son. Hot flashes can have a number of different causes, but typically if epilepsy is the cause it’s usually just prior to a seizure, during a seizure or immediately following a seizure. Other potential causes are side effects from medications, hormones, sensitivity to temperature changes, anxiety or specific phobias to name a few. Someone from the Epilepsy Foundation will probably be responding to you during the week with some more information. I would still recommend letting the neurologist know about the hot flashes though because they need to know about all of the symptoms that he experiences. I say this because there are some symptoms that may look like something else but turn out to be a focal onset seizure. For example, one of my seizures was misdiagnosed as carpal tunnel syndrome for 19 years even though I had already been diagnosed with epilepsy because the symptom was first reported to my primary care doctor who didn’t run any tests and jumped to conclusions.