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I have no one to talk to about my epilepsy

Sun, 08/21/2016 - 00:07
Hi, I've never written on ANY online forum, so bear with me because I have no idea what I'm doing. I'm a 28 year old female and was diagnosed with epilepsy at the ripe old age of 21. This is where it gets interesting...I've only had one grand mal (I know that's no longer the correct term) seizure in my entire life, and it was the morning after a night of heavy drinking and very few hours of sleep. I am extremely grateful that my epilepsy has been easy to manage - I know this is not the case for many. However, it makes me suffer every single day. I had generalized anxiety prior to my epilepsy diagnosis, and for the last six years of my new epilepsy life my anxiety has destroyed me. I am constantly in fear of what could possibly happen if I were to have another seizure, and am always wondering if I'm experiencing an aura (I.e. If I have a weird headache how am I to know its not a seizure coming on?). The worst part is that about four years ago I woke up to my boyfriend having a seizure facedown in his sleep. He did not wake up until after he arrived at the hospital. After a year he decided to stop taking his medication, and lo and behold the same thing happened and he was officially diagnosed with epilepsy. Both times have scarred me for life. I'm more concerned about his health than my own, because at least I know that I've taken my medicine. Having epilepsy has been like living with a curse. I feel guilty for writing this post knowing that there are SO many people who have it worse than me, and I know I should be grateful for every second that I'm not having a seizure. I could just really use some words of wisdom about how to get through the day to day stress and anxiety of not knowing when a seizure might occur. Therapy and anti anxiety medication have not really helped, and I've also switched my seizure meds several times (I'm currently on 1000mg of keppra 2x/day - btw is this a low, normal, or high dosage?). I also do not particularly care for my neurologist so he is no help in terms of discussing the issues that are hindering my life every single day. I can't seem to find a good neuro (I live in upstate ny) which makes everything even more stressful. Wow this was a lot - if anyone actually read this, thank you - and ANY advice would help. Also I apologize if there are any typos - I'm typing on my phone and I'm tired (but am too anxious to go to sleep because I decided that 11:50 would be a great time to research SUDEP). Thank you again!! Aimee

Comments

WelcomeGrand Mal is still

Submitted by just_joe on Sun, 2016-08-21 - 11:57
WelcomeGrand Mal is still beingused by many people and that also includes doctors. Understand that types of epilepsy and types of seizures didn't come about until the mid to late 80's. Which is when neurologists went into specialities. You said you have had 1 grand mal seizure. Well join the crowd. I had 1 grand mal. But there are many other kinds of seizures a person can have, Maybe some of your anxiety can be party of seizures. As for your neurologist and you not liking or not caring for him. Find one you like or think and ask questions. I mean when you visit your regular doctor they always ask questions RIGHT? Well the neurologists I have had always ask questions too. I answer theirs with a truthful answer. I also ask a question for every question they ask me. What you tell the doctors what ever kind of doctor gives them information about your condition. By asking your questions they are also getting information. Which gives them more information to work with.As for your diagnosis and constantly worring about when you may have another seizure. Please don't worry. I was diagnosed when I was a teen. Back then there were no forums or even computers. You are just like the person living next door. They may have a condition that you do not know about and they go out and take care of things as they always have. Weird head aches can be several things.As for your anxiety medications___Do all your doctors know all the different medications you take. The reason I ask that question is because a medication for one thing can counter a medication for another. My GP wouldn't prescribe a medication which I could use to stop smoking. His reason was a side effect for it is can cause seizures in seizure prone people. In other words it can counter my meds and cause seizures.Keppra is the best medication I have ever used. As for your dosage. It is below mid range since I take the maximum dosage which is 4500 mg a day.They are still working on SUDEP. I don't think about it expect when I see it written. I have been living and dealing with epilepsy for 50+ years. By asking questions and rewording them in order to get an answer is how I have gotten better control of my seizures. I am blessed to have been with the same group of neurologists since 1970-71. I can say and Doc would also agree I will never be completely seizure free. But a seizure today would be 2-5 seconds long and you would know nothing about it even if we were talking while drinking coffee. Typos never bother me since I make them all the time.My advice is to constantly ask questionsIs this the best medication for my seizures/ Since I haven't had a seizure in a long time could I be seizure free? If not then can we lower my dosage or what do we need to do to make sure I will not have another seizure? Could my anxiety be a seizure since it is in some seizures? Do any of my medications counter my other medications? Prerscriptions that say 2 times a day means take them 12 hours apart. It keps breakthru seizures from happening if a dosage is late or even missed. believe me I have missed many.By doing this and just going aboutyou life like everybody else does you will find out that you are no different then anyone else. They too have issues they have to dal with. It is HOW you deal with epilepsy that matters. Do you let epilepsy control you? Or do you take cotrol and control your epilepsy?I control my epilepsy I don't worry if I will have another seizure because if I do I have it. I move on to the next step in my life. seizures are just a pert of my life. Take all the time I have spent in seizures or doctors offices and add it up and you might have about 3 minutes in my life. I'll take the other 23 hours and 53 minutes and live with family friends work play and cooking along with everything else. Why waste time worrying about something that may never happen. SUDEP may never happen to me or you I don;t think they have precentages yet.I hope this hepls AimeeJoe

Best thing bout an epilepsy

Submitted by margiefox118@live.com on Tue, 2016-08-23 - 14:08
Best thing bout an epilepsy diagnosis is you know what happening. Your own reactions are what causes the anxiety. You must relax a little and stop all this worrying bout it. Imagine if you had a heart condition-you'd probably worry bout it killing you. How bad are your seizures? You know they will pass and that's great. Cursed?-would you rather have cancer? Read up on seizures and you'll understand more instead of screwing up your own head with all the what ifs you are putting there.     

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