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Embarrassed

Wed, 12/25/2019 - 10:39
Hello, This is hard for me to write about but I am in desperate need of help. I have seizures and when I come out of seizures (when I am still unconscious) I sometimes say and do inappropriate things. I don't know what, but my family has hinted at some wild things I've said and tried to do. It is deeply, deeply, deeply humiliating for me and makes me feel like the worst kind of person. My family has assured me that my brain just "short circuits" and they know that's not really me. Does anyone understand? This is such a shameful burden to carry. I don't want to go into "what" I say or do because to be honest, I don't totally know and I just assume the worst. Any help or advice would be so great. Thank you all.

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Thu, 2019-12-26 - 09:09
Hi, Thank you for posting and we understand your concerns. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. It’s not uncommon for individuals who have just had a seizure to experience feelings of embarrassment and frustration, but we are glad to hear that it sounds like you have a very supportive family to help you manage these feelings. It’s important that you’re reviewing your concerns and frustrations with your healthcare team and if you experience any changes in seizure types, frequency, moods, behaviors, symptoms and side effects, to help determine what individual treatment plan is best for you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns Additionally, you may always to 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 

Yeah I had that problem a lot

Submitted by Silvertipz on Thu, 2019-12-26 - 16:45
Yeah I had that problem a lot especially after 20 seizures in one day your brain is so tired from trying to process what real compared what real seizures world that you some time can’t believe you said that I had grunting seizure and walk right out of the store with my groceries without even thinking when I was doing and of course walk back in to pay of course but used to really hard on my self from what I would say to people and finally after so many years you learn your trying your. Best God has really made difference sometime I hear God Saying your trying you best  hope this helps 

Hi, I definitely understand.

Submitted by Patriotrehab on Fri, 2019-12-27 - 16:30
Hi, I definitely understand. I remember when I first started having seizures my family members who were abusive to me told me about some of the things that I did during my seizures. But, that’s not the worst thing that can happen during a seizure. It’s definitely humiliating, embarrassing and there’s an element of shame that a person experiences, but as one of my epilepsy specialists said, “whatever the brain can do normally, it can also do abnormally”. In the very beginning, I used to do laugh and tug on my right ear or wipe my hand across my nose repeatedly. I was unresponsive. One of the members of my family used it as an opportunity to abuse me repeatedly and I caught him on three occasions when I regain consciousness. So, remind yourself that whatever the brain does...is not your fault. What’s important is getting the seizures under control and not having side effects from the treatment. You do need to know the details of what happens so that the doctor can know. It will help them to know what part of the brain is affected. Maybe you should go for an extended video EEG. These are usually available trough epilepsy centers. If they can capture your events, they may be able to recommend better treatment options for you and get them under control. I hated going through the two studies that I went under, but it helped get my seizures under better control after 19 years. I have had a lot of different types of seizures over the years too. In the end, it was worth it. I wish you the best. 

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