I’m not one to typically ask for support. But here it goes. I’ve had epilepsy since I was an infant. Started with a few tonic clonic seizures a month until I was 15. Then it went to only a few a year.  In my 20’s I finally moved past tonic clonic into simple partial and complex partial (which I thought I was faking because even though I felt them, I was conscious and that was confusing coming from the unconscious kind). In my 30’s I enjoyed several years seizure and medication free!  About 8 years ago I had what felt like a golf ball hit the back of my head and the seizures started up again but with revenge. Having several a day. I now also have refractory temporal lobe epilepsy and mesial temporal sclerosis. I’ve tried 9 different meds including the VNS - - which malfunctioned causing severe vagal nerve damage, which is its own kind of hell.  

Ive had most of my family (siblings and mother) abandon me (for faking it because meds should have worked). I’ve lost my best friend because ‘I’m a different person and not as outgoing’.

I luckily have the most incredible hubby and 5 beyond phenomenal daughters that love and support me. But I feel they are under enough stress and don’t need the extra burden of my emotions that are starting to show up. I’m lonely and would love to hear other people’s stories and how you deal with not functioning, not driving, not being able to work or support my family.