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Tue, 06/09/2020 - 04:33
Hello everybody! I am very concern about my life. I am 28 ys old, i found i ve got epilepsy 2 ys ago after i had an episode of blackout and urine incontinence. I ve alaways had aura so i knew something will happen. I m having seizures from 12 ys old(without thinking is a seizure because there are very short and my mom didnt think this is a seizure). I went to neurologist 2 ys ago,i took initial depakote and carbamazepine, not good,specially delakotei. And now i m taking levetiracetam 1000 twice a day and carbamazepine 300 twice a day. I still got seizures... sometimes only one seizure per month and is about menstruation, sometimes above 15 seizures per month together (arround my irregular menstruation) cause i ve also got polichistic ovaries.. i was having contraceptions before starting epilespy treatment and i dind t had any seizures that time... After i stop the contraceptives seizures came back again..starting with one seizure per year and then more often and often... but there are strange.. i could drive 2 ys ago having seizure and didnt affect my concentration at all.. that is why o dont know this is epilepsy/pseudoseizures/catamenial epilepsy? Because all doctors think is epilepsy cause when i was 6ys old i had a bad o infection, i had fever 40 grades..i was in hospital i had grand mall seizures all day ( the only my life when wad grand mall), was necessary an operation( so bad the infection was), so doctors think this was the reason that cause my actual epilepsy... that infection..i m also in a bad mood for more then 10 ys so before starting my treatment .. is like before i m going to sleep i m thinking about death all time.. about kill myself.. i never tried, is just that i ve got this in my mind... and i never had treatment maybe for.depression and anxiety cause i m sure i ve got many problems.. And my seizures are strange... just lips and small jerkings movies, but I can hear, i can see, i can do what i was doing before.. the only think i can t do on my seizuree is i can't talk/answer if somebody asking me something.. and this is for maximmum 1 minute.. did anybody had this experience? Thank you very much..


Hi, Thank you for posting, it

Submitted by Anonymous on Tue, 2020-06-09 - 09:12
Hi, Thank you for posting, it sounds like you’ve been through a lot. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being,social and emotional health. . It's important to remember that you are not alone & we do have resources available that can help. If you ever need to speak with someone immediately, please contact the national suicide prevention lifeline: 1-800-273-8255, or our 24/7 Helpline: 1-800-332-1000, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources: Seizures can take on many different forms and affect people in different ways.To learn more about commonly reported symptoms before, after and during a seizure, visit: seizure It is common for some people living with epilepsy to report experiencing feelings of depression and anxiety. It’s important that you’re continuing to address these challenges with your healthcare team, and if you experience any changes in seizure types/frequency, side effects, symptoms, moods or behaviors. . Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods. “Catamenial Epilepsy” is the term used when referring to seizure exacerbation in relation to the menstrual cycle. .  You may want to consider seeing a neuroendocrine specialist, neurologist with training in hormone disorders and their effects on brain function. These physicians are usually found at hospitals or health care centers with programs devoted to epilepsy treatment,often called Comprehensive Epilepsy Centers: . It can be helpful to keep journal or a diary to keep track of your seizures & your menstrual cycle.This can help your healthcare detect possible patterns & help determine what individual treatment plan may be best for you.

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I am sorry you have struggled

Submitted by BrittFas on Wed, 2020-06-10 - 21:59
I am sorry you have struggled with controlling your seizures. And i know first hand thats just the tip of the iceberg. Being a woman I feel so upset when I get my period. I am on keppra. I feel like this deep very deep sadness where i cry so hard. For no reason. No seizures but I got to get off this medicine. Before I kill myself. Started taking lamictal. You are not alone. You feel hopeless and it seems like the dr dont care.

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