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I Have Some Questions For The Group.
A MyEpilepsyTeam Member asked a question 💭

I have been going through, what I could only describe as maybe. Mental health issues. Like depression, anxiety, panic attacks, insomnia. I don't get much sleep through the week. The only meds I take are just for the seizures. I do worry about the other problems. But the side effects of some of the meds I've seen for some of those problems I mentioned. They are just so scary. My Dr, just seems to want to Practice [ medicine] it's that bad with him. I have been thinking I might need to… read more

posted December 8, 2022
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A MyEpilepsyTeam Member

Veeg lasts for days it's very different from a regular eeg. You are wired up to long wires so you can go to the bathroom in privacy but any other time you are on a hospital bedwith no cover sheet for so they can capture all movements. Like I was saying you are in the hospital 4 to 5 days normally being recorded the entire time and they have someone watching you 24hr a day. If they think you are having any difficulties a voice comes over a speaker asking you if you are OK. It's pretty intense but it's the best way to get a good look at your brain waves because it's not just a 20 minute test it's days.

posted October 25, 2023
A MyEpilepsyTeam Member

I finally gave in a couple of years ago to therapy when I was deeply depressed and anxious. I then went to my neurologist, who told me this is common in epilepsy, and referred me to a psychiatrist for medication management. That’s helped me to deal with the underlying causes of the anxiety and depression.
So it’s nothing to be ashamed of (it happens in +30% of epilepsy patients), and you may be able to see one virtually through telemedicine. Ask your neurologist and/or physician, and if they can’t help you, contact the epilepsy foundation in your area or state.
I hope that helps you in finding the best solution, but don’t settle for how you feel right now! You’re worth more than that!! Best wishes… K

posted December 8, 2022
A MyEpilepsyTeam Member

I’ve had an eeg. I’ve had plenty of eeg’s.

posted October 25, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member normally when they are looking for answers they put you in the hospital for a veeg, which is a 4to 5 day stay video eeg monitoring. I've had numerous ones over the years. Last fall it was because I was having breakthrough seizures and she took me off 1 med at a time to see how my brain reacted than put me back on it and off the next. She could see the seizure activity in my brain change with each one. So when I was back on all of them again it settled down again though I always have some activity, it's been like that for as long as I can remember. Back to when it was on paper and my Neurologist would go through it with me. All the bursts he called them. If you haven't had a veeg, talk to your doctor about it. If they aren't willing go search for a 5 star rated Neurologist that is with a hospital that does veeg. I have to go into Houston to the medical center to do mine so I have a Neurologist there. It's a good drive since we live out of town but I get great care. I only go 2x a year for appts unless I need her, and than she will work me in if my seizures start going crazy.

posted October 25, 2023
A MyEpilepsyTeam Member

Did anyone witness you crying at any time following a seizure before the traumatic brain injury (or is the traumatic brain injury the suggested beginning of your epilepsy? I only ask out of because I cannot at this moment remember your story. However, it is proven with research and millions of people with epilepsy for a significant enough time (varies depending on the type of the initially diagnosed seizures in combination with how long after the changes began) that Epilepsy is a mutating neurological disorder, thus changes can occur just like aura types, seizure types and trigger types can added and proven seizures, auras and triggers can all or some mutate from the standard form. For example, I have been seizure free for a year and a half now, but I cannot stay in the kitchen for too long after the oven has been on for a while or in a room that is heated during the winter without first getting a headache that can grow to the level of a migraine and have my internal body get very hot (not able to measure with a thermometer and NOT an epileptic seizure (have had it happen while attached to the ambulatory EEG and in the presence of other family members who are great at noting my seizures), and it takes hours after the room has cooled down before I can enter the room. I don't know what is going to happen on Thanksgiving this year, because this latest mutation is only a recent one. It is possible that this mutation is a PNES. However, I have also had Focal Onset Impaired Awareness Seizures (complex partial seizures) mutate into very long seizures (including a nocturnal version that happened for the first time when I was in EEG Long Term Monitoring. This was the one which rattled the neurologist who was observing me overnight so much that he didn't recover for 24 hours. He even made the error of starting me on my first dose of Keppra XR at 1500mg rather than the standard low dose. He is lucky that I don't have any of the major side effects of Keppra XR, or otherwise they would have had an emergency situation that Saturday night into early Sunday morning -- whenever there was enough in my blood stream to trigger the side effect.

posted October 19, 2023

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