My name is Samantha and I have been having an issue with seizure like episodes for the last 2 months. I am in the process of being diagnosed stil, so I have many questions for those who have already walked this road. Thank you, in advance, for any input or assistance.
In the last 2 months, I have had 6 episodes-three of which result in ER visits. Each time, the paramedics classify it as a grand mal seizure and say I was in a post-ictal state (not sure if that is spelled correctly). However, after the first two episodes, I saw a neuro nurse from the local hospital. She had EEG, sleep study and MRI ordered, all of which came back clear. I did have an episode while wearing a monitoring backpack which sent me to the ER. Since all these things came back normal, I got a phone call where the nurse told me that this was "all in my head" and that I need "intensive inpatient psychiatric care." She informed me that my case was closed, they could not help me there as it wasn't epilipsey but PNES and I should work with my therapist.This all took place in a 5 minute or less phone conversation, and even though I asked to come in for follow up visit, I was denied it.
I have lived with anxiety and depression for years. Panic attacks are a major issue for me, but these episodes felt nothing at all like a panic attack. I see a qualified therapist weekly, take all meds as prescribed (religiously on time too!), meditate and work with a service dog (he is still in training). My meds are just SSRI anti-depressants and a generic xanax. Currently, I would say I am very healthy, mentally and physically, with exception that I am trying to lose weight. I do not feel out of control or like I would ever harm myself or someone else. I have a degree in psychology, so I am very familiar with DSM diagnosis and well informed about the status of my mental health. The only unusual anxiety I am experiencing it as result of this medical conundrum.
I happened to go to the OBGYN (new doc-old one closed practice) for a yearly check up and she questioned me about what "episodes/seizures?" meant on my medical form. We talked over the results I got from the neuro office and she was extremely displeased by me being released from their practice. She referred me to a psychiatric nurse in her office to assist me with removing Wellbutrin from my medications and to have further psychological assesment. The psych nurse was fantastic and actually listened to me. I was delighted with the helpful medical professionals I stumbled across when just going to get a yearly. Thank goodness for this astute OBGYN! My liecense was suspended for 6 months due to seizure activity reported by this office, which initially upset me, but after I thought about it, I knew it was the right thing. Either way, driving with this sort of looming episode issue is not safe.
I am weaned off Wellbutrin now and struggling with energy levels. Both my regular therapist, the psych nurse, my PCP and the OBGYN say that they do not believe that I have PNES, but epilepsy. My care team referred me to Brigham and Women's Hospital in Boston for a visit with a epileptologist. I had full blood work, psychological assessment (which showed nothing indicating PNES and was consistent with all the diagnoses I had recieved in the past) and am going to a weight loss center starting tomorrow.
Monday will be the visit with the Boston doc. Does anyone have suggestions on questions to ask her? Tips to prepare for appointment? What do I do if I am sent back to the therapist? Has anybody else been through something similar?