Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Am I living with epilepsy?

Sun, 11/06/2016 - 14:20
Hi, I have had a diagnosis of PTSD for 9 years and I also have a diagnosis of autism (PDD-NOS). I’m writing this because I don’t know anyone, and it seems to be what other people do in this situation. Perhaps someone will find it interesting or helpful. In the last 5 years, I began passing out occasionally at night (every ~6 weeks). My parents would hear me flailing around in the hallway and would find me on the floor in the dark, moving and groaning, but completely unresponsive. This was also happening almost every morning soon after I woke up alone in the house. The only thing I sometimes remember before becoming unconscious is a 1/2 second of some of my muscles kicking and what I call ‘catastrophic nausea’. Really bad nausea. On waking again, I am so disoriented that I have to discover where my arms and legs are and wait several minutes before I can even push myself up onto my elbows. I once mentioned to my GP that I was becoming faint, but I otherwise ignored all this for a very long time and didn’t mention it to anyone. Anyway, I thought I was merely fainting and these episodes haven’t frightened me. Then it all changed. A year ago, my PTSD psychiatrist prescribed me Tegretol as a mood stabiliser. Since that time, everything changed with my episodes. In the year I’ve been taking Tegretol, my morning episodes went from occurring almost every single day, to two episodes in the whole year. My nighttime episodes to once in the whole year. However, I didn’t make the connection between my ‘fainting’ and the Tegretol. The nature of the episodes also changed. The last few left me physically injured, perhaps because I was no longer getting a 1/2 second warning. On one occasion I hit my head and tore the skin on my forehead so badly that an eyebrow was hanging off and the skin on my nose was torn upwards leaving my skull exposed. My parents came home to find me confused and bleeding. I ended up in the emergency room where the ER doctors made the possible connection between reduced episodes and Tegretol. They gave me several tests, increased my Tegretol dose as a precaution, stitched me up, and made the relevant appointments. More doctors is not something I particularly wanted, but I now have a fierce neurologist who said it could either be non-epileptic seizures (understandable given that I have PTSD), or it could be epilepsy. He spent much more time talking about epilepsy and seemed to be leaning towards it. He said he hadn’t seen or heard anything that would exclude epilepsy and told me not to drink, drive etc, none of which I do anyway. He basically said he doesn’t yet know what it is and has ordered a bunch of tests for me (EEG, MRI), then “we’ll take it from there”. Fair enough. Wether it’s non-epileptic seizures or epilepsy, beyond wanting it to be the correct one, I don’t honestly care which. I’ll go with whatever they decide. I’m very patient and believe that given enough time, whatever it is will eventually diagnose itself anyway. And if the increased dose of Tegretol rids me of the remaining episodes, then I can forget about it all and get on with my programming. Today I had an EEG at the hospital. The EEG people were working on a Sunday. The technician said that “the background was pretty normal”. I don’t know what “the background” is, but I’m very happy it’s normal. I’ll assume that if there’s a foreground, it was normal too.

Comments

My parents would hear me

Submitted by just_joe on Sun, 2016-11-06 - 18:59
My parents would hear me flailing around in the hallway and would find me on the floor in the dark, moving and groaning, but completely unresponsive. This was also happening almost every morning soon after I woke up alone in the house. <<<< Yes they could have been nocturnal seizures which happen when the person is asleep or generally happen shortly before sleep or right shortly after waking up.A year ago, my PTSD psychiatrist prescribed me Tegretol as a mood stabiliser <<<< Yes your episodes that were haqppening ans now you have a lot fewer were seizures. Tegretol can and is used as a mood stablizer. But it is also a seizure medication so iif you were put on it then they have stopped some seizures. Seizures can and do change. Which is why you may not have goten those warnings as you call them The increase was done because they also know it is a seizure medication. Yes the neurologist also knows. You however do not know the connection that PTSD or autism have with epilepsy. Yes they do have connections. The EEG is a brain wave test showing the electrical activity coming from the brain. if it all comes back normal then it is just like everybody elses. But I had 20-25 EEG;s that all came back normal. It is that EEG's that was longer in which I fell asleep in that showed the abnormalities in that showed the neurologists where they were coming from. By knowing that they then went to the MRI and a closer look they found the scar tissue, So if you want to have a diagnosis you want the neurologist to see the abnormalities. That way they will see where to look and if there is anything different in that area of your brain. The MRI shows th brain as it is. If there is anything on it that is different then that could be the cause of your episodes or seizures. By anything that is what I mean. For me it is scar tissue in the left lobes of my brain. If your PTSD was caused by a head injury  then you may have scar tissue too. All it takes is a blow to the head which causes a hemoraghe and that not getting taken care of. That blood on the brain can cause scar tissue. A growth on the brain or areas that have cell deformations can cause electrical impulses to hit worng.I hope the neurologists can find answers to your questions.I hope this helpsJoe

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.