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If/ I may ask, should you not be comfortable answering by all means. How has everyone felt after their diagnoses? Was it hard to accept?

A MyEpilepsyTeam Member said:

I've had epilepsy all my life and diagnosed with a seizure disorder wen I was 5 so it was never really hard for me to accept until I actually turned into my teen years when I started being excluded from alot of things and having my extreme migraine headaches and frequent seizure activity and then at 35 when I was put on disability and had my driver's license pulled and not being able to work and that was 20years ago

posted 4 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member This increase in anxiety is perfectly normal as is depression after you have been told that you have Epilepsy -- a neurological disorder that has no cure and will cause significant changes to your life and that you will be on medications for the rest of your life. And that is even before you have your first seizure in a public location and thus the anxiety, depression, frustration, etc. just increases more. What you are experiencing is just one of the early steps in progression (you went through something similar after you were diagnosed with cancer because it too has no cure, but most cancers allow you to battle them and get to remission). Just like with cancer, you can battle with epilepsy and continue on until you can reach a long term seizure free state. And I know that you can do this. And just like God was watching over you while you were in the battle with Cancer, He is doing so as well in the battle with Epilepsy. And you have a lot of friends on here who are praying for you and here for you to vent and talk to in order to help you reduce your stress levels and get to that long term seizure free state. Until the end of October 2021, I believed that I was not capable of reaching a completely seizure free state (even when in 2002 I had reached a year with only auras and simple partial seizures, but that ended in June 2003 with the pharmacist's error). If I can do this, then I am sure that you can because I am 55 and have been dealing with Epilepsy longer than you have been alive. God bless you!

posted 5 months ago
A MyEpilepsyTeam Member said:

Being diagnosed as a baby and growing up with it, I was able to learn through my ups and downs. As young kid , I had thought of myself like everyone else, until I started going to school. That’s when I realize and learned that I wasn’t as normal As I thought. I struggled the most during my teens. Going to a Epilepsy support group through the Epilepsy Foundation, helped me out of the slump I was in. I basically had to learn over of what I thought about Epilepsy. I had also started coping by my twenties.

posted 5 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member Sorry to hear that you have had to endure all of that! I was blessed that back in 1980, the focus was on my heart (because my older brother had to have open heart surgery as a newborn), thus they were not able to identify the "fainting spells" as anything besides that. And partial seizures were not known to exist until research proved it in the mid 1990s, thus they were just "Johnny being Johnny" moments back then. It would not be until 1997 that I had physical proof and a campus therapist asked for details while he looked through medical books. He is the one who unofficially (he is not an MD) diagnosed me with having Complex Partial Seizures (at that time I was not having the full seizures too. The full seizures did not return until the early years of the 21st Century.). The visiting psychiatrist confirmed this analysis the following day and recommended that I make an appointment with a neurologist. And it was after going home with a 48 hour portable EEG at the end of my first appointment and then the neurologist examining the EEG recordings from the 48 hours that indicated that I had epileptic seizures during the 48 hour period that I was officially diagnosed as having epilepsy.

If they had given me an EEG test back in 1980+ and I was diagnosed with epilepsy at that time, then my life would have been significantly different.

posted 4 months ago
A MyEpilepsyTeam Member said:

Relief to find medical reason for weird crazy thoughts. Epilepsy just explains why. Not crazy or psychic just a medical condition that causes it all. Glad we have meds to help avoid seizures.

posted 5 months ago
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