Community Forum Archive
New to epilepsy and looking for advice.Sat, 05/02/2020 - 04:38
Topic: New to Epilepsy.com
Hi everyone, I’d just like to introduce myself first. My name is Samantha and I’m 17. Up until recently I’d never really had an issue with my health. But then things started to change, it all started a few months ago. I was just in the kitchen and was trying to close a bin when the plastic snapped and scraped my wrist and for whatever reason I immediately started pacing and saying I’m going to pass out, why am I passing out? And just repeating that in my head and out loud. My parents then got a chair and had me sit down so they could look at the scrape and then all I remember is waking up confused and then immediately screaming and crying. At the time I just thought I passed out but later I learned I had been convulsing and it was a seizure. Either way I just wrote it off as me being scared of blood or just passing out from not eating or whatever from my anemia. Then I’d say around 2-3 months later at the beginning of March I was at school and I thought I was having a migraine or a fever. I couldn’t talk right (slurring my words and all), I’d start randomly giggling, I’d completely forgot what I was doing etc. I went to the nurse to call my parents and go home but they were at a doctors appointment for my stepmom and wouldn’t be able to pick me up for another 2 hours so I was just like oh well and went back to class. I got to my class and we always have a 3 min quiz at the beginning so I was worried I wouldn’t do well and tried to ask my teacher if I could not do it that today but it just came out as a bunch of incoherent nonsense but my teacher could tell something was wrong and just told me to try my best but don’t worry about. So the quiz starts and I stare at my paper and become more and more upset because I can’t remember what I knew and I just started forgetting literally everything. At that point I was close to tears cause of how confused and overwhelmed I was and I went to get up and ask to go to the nurse but instead I ended up just basically falling onto my teachers desk. Luckily my teacher immediately made me sit in a chair and called for a medic and I just kinda sat there unable to move or talk and I blacked out for a moment before coming back to. By then the medics were there and they put me in a wheelchair and did some tests they could then but couldn’t find anything wrong with me. After that I was seriously freaked out, we set up a doctors appointment and they said that I very likely had a seizure especially since my younger sister had extremely bad seizures up until she was 4 or 5. They set me an appointment with an neurologist on May 28. Now that I’m looking back on all my past behaviors that I just thought was me being ditzy or blaming it on anemia or being sleepy I’ve been getting more and more concerned. I didn’t even know that having a seizure doesn’t always mean convulsions and it can actually just be like a sort of shut off. And this happens to me all the time, I’ll just stare of into space do things without realizing, I always thought I had a short term memory or something because Ill literally forget what I’ve had for breakfast or repeat something I’ve just said to someone. I can almost never remember which people I have/haven’t talked to and what people even look like. I also had this thing where I’d stumble a word like a broken record and just repeat it like 10-15 times before having to stop by myself by taking in a breath or just telling a different word. I’ve also just had tons of time where I start randomly falling or lose my balance for a minute. Either way the point of all this is that before I’d never noticed just how out of it I almost always am and now that I know it could actually be a medical condition I don’t know how to feel about it or what to do. I just keep realizing more and more occurences that could actually be a seizures because before now I never knew that having a seizure didn’t always mean having convulsions. As of now I’m just anxiously waiting to have my neurologist appointment, but do any of you have and advice on how to deal with suddenly realizing you may have epilepsy and does anyone have just general information on what having epilepsy entails? Other than that is there any advice on how to tell friends about having epilepsy? Ive wanted to get all of this off my chest because I’ve been too afraid to tell my friends about this because I don’t want them to be worried.
Thank you so much for your
Submitted by Clyde_5ead2444b9d6a on Sat, 2020-05-02 - 16:52
Thank you so much for your advice and I’ve been staying away from driving since even before the school event because I was once driving in the neighborhood and had a blank out moment and almost hit another car, luckily my dad was in the car with me and moved the steering wheel so I wouldn’t hit them and everyone was fine but I’ve definitely avoided driving since. And thank you for the advice on how to tell my friends I definetly agree that saying I have epilepsy is not a good idea because it could be a variety of different things causing this and I want to wait until my issue is properly diagnosed. I’d just like them to be aware that there is something going on but I’m getting taken care of. Once again thank you
Hi,Thank you for posting.
Submitted by Anonymous on Mon, 2020-05-04 - 08:26
Hi,Thank you for posting. Seizures can take on many different forms and affect different people in different ways. https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure . We cannot determine if you’ve been experiencing seizures or have epilepsy, so we are glad to hear that you have been referred to a neurologist to explore this further for additional diagnostic testing. As Gianna shared in her comment, 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 non-epileptic events. To learn more about conditions that are mistaken for Epilepsy, visit: https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy .Documenting these episodes, you’ve experience in detail, (like you done in your post) and providing a thorough family history, (if possible) will be very helpful to review with your healthcare team. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , is a great tool for tracking these episodes you’ve experienced, organizing your medical history, and more which can be shared with your healthcare team. 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 firstname.lastname@example.org. epilepsy.com/helpline
Hi Samantha. Thank you for
Submitted by Patriotrehab on Sat, 2020-05-02 - 13:17
Hi Samantha. Thank you for sharing your story and trusting us to help you as you go through the process of learning if you have epilepsy. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy, No one here can tell you if what you are experiencing are seizures or not and as you said, seizures do take on many forms. I would strongly advise you against telling your friends and others about having epilepsy though until your diagnosis has been confirmed. There are other conditions that mimic seizures and you even had some examples of them in your post, but those aren’t all of them. You could tell your friends for now that you are definitely having something going on with your health, but that they don’t need to be concerned because you are scheduled to see a specialist and they have access to testing that will help them figure out what is going on and they can likely even get you started with treatment the same day. Now, I do have some other advice though for you because you seem to have such a wide variety of symptoms. If the neurologist is not an epilepsy specialist a.k.a. an epileptologist who works out of an epilepsy center, you may eventually need to be treated by one and you may even want to talk with this neurologist about the possibility of an extended video EEG monitoring (7 days) if the routine EEG is within normal limits and they are not able to confirm a diagnosis of epilepsy. The reason that I say this is because the VEEG is considered the gold standard for diagnosing epilepsy, especially when there are different events. I also see that you are eligible to drive according to your age and I’m sure that you may already know this, but please for your safety and the safety of others, do not drive until the doctor says it is safe and the laws within your state allow you. I remember when I was first diagnosed with epilepsy at the age of 19 and the hardest thing to do was accept that I had it because I didn’t believe what people told me I was doing and when I started having the seizures that I maintained awareness, I thought they were caused by the medication. So, it’s definitely an adjustment process and it’s different for each person. Best wishes!