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I need help

Hi all, I’m new to the forum.

I had my very first seizure in 2017 or 2018, I remained fully conscious throughout the seizure, but experienced memory issues such as not remembering my name or age. This seizure lasted a total of 5 hours, hence I was rushed to the local hospital by ambulance. The emergency room were absolutely useless, and did nothing to stop my continuous neck spasms/twitching which the first responders had identified as a myoclonic seizure. Fast forward 4 months, I had an EEG, which came back normal, as I was made aware that they only detect abnormal electrical activity during that moment. I had one appointment with an epilepsy specialist, where I described all my symptoms which ranged from terrible headaches, smelling faeces when no one else does, muscle limpness feeling as if I was going to fall down suddenly and feeling extreme soreness/tiredness after a Seizure. All the specialist did was look at me like I was crazy, and define my seizure activity as non-epileptic and advise me to see a psychiatrist/psychotherapist. After being dismissed like I was, I started to believe I was crazy, and that my seizure activity was merely all psychological and wasn’t actually happening. So I continued to deal with my seizures alone without treatment. Fast forward to now, I’m now a university student struggling, as I have a great aversion to flashing lights, which makes clubbing difficult. The uni lifestyle revolves around sleepless nights, which I have noticed triggers my seizures, along with stress, alcohol and flashing lights. My seizure activity is now more often than it used to be and is really interrupting my everyday life and studying unfortunately. I have been tempted to go and see a doctor in the city I go to university in, however my previous experience with my possible epilepsy treatment/testing years ago, has left me a little discouraged. Sorry for the lengthy-ness to this post. Am I crazy? Or is everything I have and am currently experiencing myoclonic epileptic seizures or something else all together?
Hannah.

Comments

Hi, Thank you for posting, it

Hi, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone, and we are here to help support you. We are sorry to hear to hear that you had such a negative experience with your last doctor. We cannot determine if you these episodes you describe experiencing are myoclonic seizures or a separate issue. It’s important that you're continuing to follow-up with your healthcare team (that you're comfortable with), for further evaluation and determine what individual treatment option may be best for you. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with your doctors or that you all aren't working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/se... . Some of the most frequently reported triggers for people living with epilepsy include, lack of or poor-quality sleep, stress & moderate to heavy use of alcohol. It is great that you’ve have been able to identify your triggers, this can help you and your healthcare team detected potential patterns, allowing you to modify your behaviors and lifestyle as appropriate. https://www.epilepsy.com/learn/triggers-seizures. In addition to identifying your triggers, documenting these episodes you’ve experienced and how your feeling in detail, (like you done in your post) will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... . There are also physical or medical events that may mimic or look like seizures and are not due to changes in electrical activity in the brain, often called nonepileptic events. To learn more about conditions that are mistaken for Epilepsy like PNES (Psychogenic Nonepileptic Seizures or Events), visit: https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy . Additionally,you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources. 1-800-332-1000,or contactus@efa.org. epilepsy.com/helpline .

I do not know if you are

I do not know if you are still on here or not but i think it helps to know you are not alone. A week ago I OD'ed on a med I was taking and have been having seizures since. None that are 5hrs though thats got to be really hard i am so sorry! The ER keeps dismissing them saying they are non-epileptic seizures caused by anxiety. They are not. they will not even give me a simple EEG. A doctor even told me that you have to be unconscious for it to be a seizure. kinda laughable. I was thinking mine may be myoclonic seizures too. You are not crazy. they like to make us feel that way sometimes but you are not. Were you having a seizure during your EEG?  

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