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I'm happy to learn about this and plan on discussing with neurologist. I've downloaded the questions to discuss with her.
I'm so grateful for this resource. ❤️
Epilepsy not even among the top 30 fatal illnesses. The SUDEP is rare, most from wheñ epilepsy just not being treated right.
Living the lifestyle of Epilepsy, I've learnt that everything we do , involves a certain level of risk. For example, walking, chores, working, leaving our home, driving, riding thrill rides at an amusement parks and ect. These examples have different levels of risks. How big of risks are you willing to take , to live a close to normal life.
I take zero risk as I just live a normal live
Hi guys,
I'm not on any medication at the moment for my tonic clonic and grand mal seizures.
I'm wanting to speak to my Dr about maybe starting Topomax.
Has anyone been on it? Any side effects? Does it help stop seizures?
Did you take topomax in conjunction with other seizure meds or on it's own?
Thanks heaps.
I hope you have a blessed Christmas holiday also @A MyEpilepsyTeam Member
A relative of mine came up to me, wanting understand more about epilepsy and applying for Social Security. She new I about my Epilepsy, and the basics of it. She has got to know and become friends with Epilepsy. She needed deeper info so she can help her friend
out better. This lady has no work experience, know minimal life skills and has a husband in worse shape than her. He has spinal Bifida , been in and out of the hospital . She is living off his SSDI and doesn’t know or realize that if she… read more
I’ve never met anyone who’s asked about it. If a person does that then they probably really care.
If not, then check out this link from the Epilepsy Foundation New England and spread the word about it:
https://www.lightthewaytoday.org/sudep
sudden death in Epilepsy
My wife is living with epilepsy and I am so scared to death of losing her. I would like to know if there is anything we could do, or is it something that's inevitable?
I would say when for some reason the seizures can not be controlled, no matter what they do
Does anyone know of epilepsy medication that is linked to SUDEP. Just wondering. Many thanks!
If you are at risk of SUDEP, then your neurologist/epileptologist might have prescribed a seizure stopper medication that is on your medical record. Do you like alone? If not, then is someone who… read more
Yes
Heather, I believe that the type of seizure that you are trying to think of is a Status Epilepticus. When you hear of life threatening seizures, this is what they are talking about. You probably heard… read more
