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Passing the Test
Sun, 09/15/2019 - 15:04I’m now on day 7 of 7 for my VEEG, with tomorrow morning scheduled for an MRI and discharge. After 19 years of intractable epilepsy that started under what my epilepsy specialist felt were “suspicious” even though high risk circumstances, he suspected that I may have PNES instead of epilepsy because my EEGs MRIs have had conflicting results about a stroke and seizures with several epileptical zones. In the end... I proved to him that I do in fact have epilepsy and no PNES! In fact, the epilepsy specialist (neurologist) on staff even has an explanation for why my records look contradictory. She suggested that I had a severe case of PRES, which is called posterior reversible encephalopathy syndrome. In extreme cases like mine, it can result in cortical blindness, cognitive impairment, and chronic epilepsy because the brain is going to constantly make adjustments given that mine wasn’t caught and resolved in sufficient time.
The danger though is that this VEEG and MRI could have revealed nothing and because I’m a woman with emotion about how I was medically neglected...I could have been misdiagnosed, taken off my meds and either resulted in death or injury to self or others if he insisted that the PNES was more likely!
See this article for reference. http://www.scienceinquest.com/open-access/fulltext/jnpd/a-proposed-etiology-of-psychogenic-nonepileptic-seizures.php
Hi Patriotrehab, Thanks so
Submitted by Anonymous on Mon, 2019-09-16 - 09:50
Hi Patriotrehab, Thanks so much for posting, it sounds like you’ve been through a lot. We are sorry to hear you’ve had such negative experiences with your healthcare team. Treatment varies for each individual, so it’s important that you consult with your healthcare team (that you’re comfortable with), to determine what is best for you and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf If you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions or assistance finding an epileptologist, (epilepsy specialist), please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional supportOr contact your local Epilepsy Foundation: epilepsy.com/localsupport My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests.It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.