Couldn't find what you looking for?


:( Hey, I am a 33 yr. old mother of now 5 kids (I have 2 and just married a man with 3), and I have severe epilepsy. I have gran mal seizures all the time, usually at least 1 a week. I have a cyst on my Pineal Gland in the brain as well. I have been hospitalized many times over the last 5 yrs., but the last time was the worst. I stopped breathing and my heart stopped. Not only do I not remember anything about the event, but my memory overall is pretty much toast. I can no longer drive, for fear of harming another person or myself. My muscle function is nothing like it used to be. I don't sleep well due to severe back pain in the lower lumbar area, an issue made much worse due to the constant stiffening and convulsing during the seizure's themselves. I never have any energy and I get awful headaches that nothing I take will make go away. I have brain cancer that runs in my family and worry all the time about what could happen to me. I went to nursing school, so I know that a cyst and tumor are 2 differrent things, but the cyst is not all that I am worried about. We have seen neurologists and I have a brain surgeon, but it's like talking to a door. No one will listen to me. I have been on EVERY anti-epileptic drug there is, including cocktails, and nothing is working. I have had 3 seizures in the last 4 days. I pretty much quit going to the E.R. because they just pump you with Ativan to relax you, tell you to make sure you take your meds (DUH), & send you home. My family knows what to do & when to call, and when they do that's when I spend days in the hospital. This has become a ridiculous, unending cycle. I've hit my own mother during a seizure. I have bit myself and tried to rip out my piercings. I've hit dresser's and left huge bruises on myself. Hell, I've even suffered head trauma. I am fed up. I need real help. If anyone reads this and can help me, I am in the Ohio Valley area, but I will do whatever it takes and go wherever I have to if I can rid myself and my family of this disease that is controlling our lives!!!! :cry:



Our son is currently in hospital in Perth, Western Australia with almost identical symptoms to your own. Craig is 35 years old and has a pineal cyst with epilepsy. He has had 5 seizures in the last 48 hours. He is basically wrecked and we are at a loss as to what we can do. We hope it may be some comfort to you to know that others are searching for the same answers, albeit on the other side of the world.
Please let us know if you find the answer and we will do likewise.
Colin & Debbie


Jenn and Colin&Debbie, do you have strong and positive support systems online and offline? I am now helping a woman with a daughter that has epilepsy and a pineal cyst. I wonder if your symptoms may be the same as her daughters. I'm reaching out to all of you to bring you support that will give you hope. Please know you are not alone.

Peace&Power -

Tonya Heathco
National Seizure Disorders Foundation