Anyone else get these weird feelings?
Newly diagnosed as had 5 seizures over 5 months. Two landed me in hospital with a tongue bitten to shreds and broken cheekbone.
CT and bloods clear, just waiting on EEG and MRI. I've started medication.
Does anyone else have when they're super confused after a seizure? I don't know who or where I am, my speech is slurred and I'm so disoriented.
I never have auras before a tonic clonic but I have bouts of trembling hands, random muscle twitches, I can smell burning rubber or tobacco smoke, my speech is slurred and I see there vertical blue flashing lights
Oh and my ears ring LOUD!!
But before my tc seizures I have no warning just boom I down.
Anyone else?
Thank you ❤️
I have grand mal nocturnal seizures. I wake up completely disoriented and always with a tongue injury of some sort. My disorientation, confusion, and lethargy and what is termed 'jamais vu' lasts for weeks afterward. I also have a loud ringing in my head which never goes away but varies in intensity. The 'phantosmia' (phantom smells) drives me crazy - again, it's always there but varies in it's potency. I have yet to make a connection between the symptoms and the seizure event.
I appreciate your encouragement; however, let's not confuse strength with ... I don't know, encumbrance 😉 The only other choice besides persevering is 'not', which is not a choice for me. Not today anyway 😀 Which leads me to a topic for which I'd like to find a good discussion: anti-convulsant meds and how to 'strategize' those debilitating side effects. 
Yes, I totally hear you! The side effects can be horrible. Two of our writers wrote about some of their experiences with this, you might enjoy reading: "Navigating Anticonvulsant Side Effects" by : https://epilepsydisease.com/living/anticonvulsant-side-effects and "Epilepsy and Access to Mental Healthcare" by : https://epilepsydisease.com/living/mental-healthcare-access Take care, Colleen (Epilepsy Team Member)
Hi there,
I am so sorry you are newly diagnosed. I have been having seizures for over 20 years. My seizures changed. I used to get a warning before my tonic-clonic seizures, but now I don't get any warnings at all. I try to pay attention to how I feel. If I feel off that day, I may take it easy. Depending on the seizure, I am usually confused. It would take me a while to recover from a tonic-clonic seizure.
I hope I am able to help! And Kailah provided some useful articles.
https://epilepsydisease.com/living/diagnosis-fear https://epilepsydisease.com/symptoms/confusion-consciousnessFeel free to reach out if you have any questions and/or about my journey.
Derra Howard
Team Member
Hi there! Thank you so much for sharing with the community. I found a few articles on the topic of newly diagnosed that I think may be helpful for you as you try to navigate through this journey. Wishing you all the best and please know this community is here for you!
https://epilepsydisease.com/living/first-seizure-diagnosis
https://epilepsydisease.com/living/diagnosis-fear
https://epilepsydisease.com/symptoms/confusion-consciousness
Kailah (Team Member)
