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A need to grab something while having a seizure?
Sun, 10/06/2019 - 04:44Topic: New to Epilepsy.com
Hello, I've been diagnosed with epilepsy since the age of 5, because of how young I was im not sure what kind of seizures they're called but they're nocturnal. Most nocturnal seizures from what I've told people to stiffen up but I don't, I flail and knock things over.
I've noticed though within the past few years I'll wake up with an overwhelming need to grab something (actually uncontrollable I MUST grab something) sometimes rambling nonsense about how I have to do something important. typically after I grab whatever I was focused on (usually a glass of water or my phone) I'll get out of the seizure. But if the glass is empty or if it's later than I expected /I overslept it gets worse?
I'm not sure what this is, if it's normal, I've tried explaining it to my Neurologist but she said it sounds psychological. and when I asked my therapist they said thats Neurological so I got no answers.
Comments
Hi Art_Person,Thanks so much
Submitted by Anonymous on Mon, 2019-10-07 - 08:58
Hi Art_Person,Thanks so much for posting. We understand this must be very confusing and frustrating to experience, especially if you feel your doctors are not listening to you.Like Gianna mentioned her in comment, it can be challenging to find a healthcare team that your comfortable with, so it’s important that you’re able to advocate for yourself. 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 a 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 Seizures can take on many different forms and affect different people in different ways. Learn more about seizures, here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure Sleep is essential for physical and mental health, as well as, quality of life and safety. For more information regarding seizure safety at night please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping Additionally, you may want to consider with your doctor having a device that can help track seizures, by reviewing our seizure alert device factsheet: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfAnd by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication, other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your doctors.Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find& give support to each other. Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,provide referrals and additional support.epilepsy.com/helpline
Hello Art_Person,I am a
Submitted by Patriotrehab on Sun, 2019-10-06 - 14:26
Hello Art_Person,I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. The reality is that many neurologists don’t understand a person’s seizures and many therapists don’t understand dreams and/or psychogenic non-epileptic events also known as psychogenic non-epileptic seizures (PNES), which is why you are stuck between the two and not getting any answers. The gold standard to determine if what you are experiencing is a seizure is an extended VEEG monitoring to try to capture one of your events. These can be fallible and they are not full proof, but in general if you do have one if your events, generally speaking the doctor should see some changes on the EEG. If not, then it’s more likely that it’s PNES or something else. My new neurologist was the first one to tell me that he thought my seizures were psychological, so he put me under one of these VEEGs for a week and it was the best thing ever because it proved him wrong. He failed to build a good relationship with me in the first meeting and if he had, he may not have done the testing because I have treated clients with PNES and I know quite a bit about “psychological seizures” and how to help people be free of them. My advice is this: ask about a 7 day VEEG study to confirm your diagnosis of seizures and the events that you are having at night. If your current neurologist doesn’t have access to that, you may need to go to an epilepsy center and seek the consultation of a neurologist there. If it is deemed to be psychological in origin, you can reply back to me on this post and I can advise you on some resources from there. Someone from the epilepsy foundation may also offer you some resources this week too.