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Just wanna share - Thx in advance

Wed, 07/12/2006 - 01:44
I was debating whether to post and I just read another which referenced posting being therapeutic even if none responds. As I sit watching Pretty Woman at 2:30am, I am in tears b/c I am dealing w/ being new to all of this and reading those who have similar stories. I had my first grand mal seizure in March of this year. And life has changed so much since then. The day I had the seizure, a girlfriend of mine had dropped by. My 2 yr. old was taking a nap and my twins who were 2 mos. at the time. were in their bouncers. My fiancee' left shortly after my friend arrived. She and I sat on the couch talking. It was a normal Saturday. My fiancee' and I were planning to take all of the kids out to the park b/c it was such a gorgeous day. As my friend and I sat on the couch chatting, she asked me to hand over my baby girl b/c she had not yet held her. My son was sleep in his bouncer. As I did that, my phone rang. It was my best friend. While my friend who was there played w/ my baby girl, my best friend and I were talking about the night before when I took a much needed break and hung out w/ some friends of mine. We had gone to see a local band and my best friend asked me the name of the band. I recall not being able to remember so I turned to my friend who was there and asked her the name. I recall having to ask her 2x b/c I couldn't say it and the next thing I knew, the Paramedics were sitting on my couch asking me if I knew who I was, if I knew who my kids were and if I knew my own name. There were 4 Paramedics. My friend was standing up w/ my baby girl in her arms and my fiancee' was on the steps. It was soooo weird. I recall feeling so out of it and lightheaded. I rememeber asking the Paramedics what they were doing at my house and they attempted to explain that I had a seizure and I was in such disbelief b/c as far as I knew, nothing had happened. I just kept asking what are you doing here? I was able to tell them my name but although I knew who my baby girl was, I was not able to tell them her name. I instead turned to my fiancee' and was like Mike, tell them her name and not really thinking anything of the fact that I couldn't tell them. They asked me some other questions that I was unable to answer and said they needed to take me to the hospital b/c I may have another one. I was still pretty out of it but didn't think I needed to go. Since I only had on a tee-shirt, they allowed me to go and grab a pair of sweatpants. I remember stepping into my room w/ my fiancee' and looking at him and crying b/c I didn't understand what was going on. They didn't allow me to walk out myself and instead buckled me to the bed and put me in the ambulance. My fiancee' followed behind in our car. While en route the Paramedics hooked me up to oxygen and I kept trying to take it off thinking I didn't need it. They proceeded to ask me more questions some of which I could answer and some of which I could not. It wasn't until we arrived at the hospital and I was waiting to be admitted, did I start to regain full consciousness and become aware of what had happened. Even then, I wasn't aware at that point, just how much "this" would impact my life. I was not kept overnight and did not have anymore seizures that day. I was checked out and prescribed Dilantin. At that time, they didn't feel it necessary to do an EEG or MRI. The Doctor did do some range of motion tests and asked very specific questions about how I felt prior to the seizure and post-seizure. I did have a headache and was starving and I had bitten my tounge so the side was pretty numb. It was as I was talking to the Dr. that I realized just a couple weeks before that I had a Grand Mal seizure but didn't know it at the time. I was home alone w/ the twins. I recall putting both of them to sleep. I hadn't had much sleep so I proceeded or so I thought to lay down on the couch and the next thing I remember, I woke up on the floor. I got up thinking I was so tired that I must've fallen off the couch and even though I don't sleep wild, I figured I was just that tired which if you have twins and a toddler, you understand so it didn't seem that far fetched. But the thing that was weird was that my tounge hurt. And I even remember talking to my fiancee' later in the afternoon and I was telling him I must be exhausted cause I had fallen off the couch while sleeping but I couldn't understand why my tounge hurt. I didn't think anymore about it until talking to the Dr. I was sent home and it wasn't until after that I was told the full story. My friend said that after I asked her the second time for the name of the band, I turned to the window that I was sitting right beside and stared and then just started moaning and moaning and she could hear my best friend on the phone call my name. I ended up dropping the phone and started convulsing. My girlfriend was very descriptive. She said my eyes rolled into my head and I just started shaking but I never fell off the couch. She said it lasted for a few minutes. She picked up the phone and told my best friend that I was having a seizure and to call 911. Meanwhile, she told me I was gonna be ok and that she was calling 911. What was so amazing was that she didn't know my fiancee's number but knew she needed to call him to get back to the house and she scrambled trying to figure out where she could find his cell and ended up walking over to a side of the refrigerator which isn't even visible and pulling it from all things, our landscaping contract ...pure intervention. Anyway, she told my fiancee' what was happening and that he needed to come home right away. Afterwhich, she called 911 too. By this time, I had stopped convulsing. She said my head was hanging down and I was bleeding from the mouth and moaning. She said as I came to after a few minutes, I looked at her and asked who was she and started screaming. She was on the phone w/ 911 at the time and since she was holding my baby girl and didn't know what I would do, she ran outside b/c she said I just kept asking who she was. I didn't run outside after her and thank goodness cause I only had a tee on and I would've been so embarassed but when the Paramedics arrived, she was outside. She stayed behind to take care of my kids so my fiancee' could follow me to the hospital and by time they discharged me and I arrived home, my Mom and mother in law were over as well as 2 more of my friends ...Praise God for family and friends. I was so naive though b/c the Dr. had said w/ the Dilantin I may not have another and until you go through "this", you don't know what to expect. I was ok initially but then you begin to realize the extent of what happened and I was so horrified at what my friend had to endure and the fact that she even had to witness that. I can only imagine so I felt really guilty about that for weeks. But then it is almost like you start to look over your shoulder constantly waiting for the next one and b/c there was no warning before that one that I can recall, no aura or nothing, I didn't have a clue. But I figured the Dilantin would help. Alas, I was wrong b/c a week later, I ended up having an allergic reaction which sent me to the hospital and this time I was admitted and kept. I felt sick the day before and I had sent my fiancee' on a local spa getaway at a hotel b/c there had been so much going on and he just needed a break so I was actually home alone w/ the kids overnight but I felt sick the day before but didn't think much of it but that next day, I started breaking out in hives and feeling weird. By that evening, I was running a temperature and knew something wasn't right. I called my mother in law to watch the kids and drove myself to the ER and explained what was going on. Initially they told me I had to get in line but I told them what was happening and that I was just here the week before. They took me back and drew some blood and assigned me a room. The PA came in and said my levels or something looked funky and they were afraid I was gonna have another seizure. Here I thought they would just prescribe me something so I could go but they were really concerned. I could see it in the PA's eyes so the next thing I knew, I was calling my mother in law telling her, I was staying. I knew my fiancee would be home soon. They took me off Dilantin and gave me Depakote and wheeled me up to a room and kept me on monitor. To make a long story short, they kept me for 2 days. One day I had the MRI and the other I had the EEG both of which were normal or so they said. My story since, the Neurologist I am currently seeing has increased the Depakote. I have not had any Grand Mal seizures but I have had some petit mal some of which just leave me spacey and aware something is happening, others of which leave me not being able to decipher my thoughts or able to talk. It is frustrating b/c I don't know what the trigger is. When I posed the question to my Neurologist as to whether stress can be a trigger, he simply replied if I am stressed, I need to see a Psychologist. What? I never said I was. I simply asked if that is a trigger more or less trying to figure out what he is still trying to determine. In the meantime, I just feel like I am constantly on guard and now that I am on medication, I can't drink. I don't go out as much, not that I was anyway but my whole lifestyle has changed. I am just always monitoring myself and now having to take medication every day. And my Dr. has me on such a strict regimen that I feel like if I don't take it at the same time every day, I am opening myself up to having a seizure so sometimes I may sleep a little later and wake up and run to take it, other times it just slips my mind (easy to do w/ 3 kids) and I look up like oh my goodness! Since I continue to have seizures, my Dr. says I should not be driving so I am grappling w/ that and that I should be on disability but what the? I am not even 30 yrs. old and I feel like my entire lifestyle has changed and noone understands. "This" is and can be so lonely b/c unless one has had a seizure, there is no way to understand or even fathom it what comes after as far as treatment or determining the best treatment. There are some days where I kinda feel like there is this underlying feeling that I could have one any min. I can't explain it b/c it is not an aura but just a weird just beneath the surface feeling and I am so scared of having another Grand Mal. I just had some blood work done so I am awaiting results but in the meantime I looking to see another Neurologist for another opinion. I don't have a problem being assertive so not worried about that. I just need to schedule an appt. and take it from here but deffie feeling a little down at the moment about the whole situation and not wanting to be a burden. Noone knows besides me and my Dr. that I continue to have Petit Mal. I just don't wanna burden anyone ...always been that way and this requires that I be more dependent than I have ever liked to be. I don't even tell my fiancee' b/c I don't want him to worry. He doesn't even know about the disability thing and the paperwork my Dr. gave me re: my being out of work. I don't know how to end this. I am just ranting cause I have noone else to share this w/. I know others are dealing w/ way more than I am so I am blessed. Thanks for listening.

Comments

Re: Just wanna share - Thx in advance

Submitted by ritab2002 on Wed, 2006-07-12 - 11:34
I had my first Grand Mal in April 2005 it is truly uprooting and an emotional experience your life begins to take on new experiences and needs new info and understanding. Although if I could change this I would, I also feel like I have gained an understanding of life I never had before. Particularly, of people who deal with or have dealt with a chronic illness, and most importantly this one. I mostly have found great inspiration from those who continue to share their experiences and knowledge with us "newbies" Best wishes to you and keep on coming to this site and even to the chat line it really does help to be with people who share some of your experiences. I wrote a poem (actually several) some really angry when this first happened but this one is similar to your feelings that you have expressed. Writing helps me to get my thoughts out. A Moment In Time - by Rita Brown Voice… trapped… a dreamy fog surrounds Faces … stare…. concerned, confused Alone…I am…afraid…embarrassed…mystified Dark…outside...my bedroom…strangers..? Why…what happened…? I know it’s bad Senses…. hazy… feeling small Tired…. gentle questions posed Cannot answer, don’t know why Cannot understand Cannot walk Cannot talk Something connects; I begin my return Somehow the trap opens Somehow the fog parts Somewhere I see…an ambulance? Lots of questions Nothing but time Tests are numerous Answers are not Now it is tomorrow and the journeys begun They tell me I’ve had a seizure I ask them for more A moment in time My body aches and my tongue is so sore This feels like a battle definitely not won Yesterday before this, is where I wish to run…

Re: Just wanna share - Thx in advance

Submitted by ekoorb on Wed, 2006-07-12 - 22:13
I wanted to respond to your post. I do not have epilepsy but my 5 year old daughter has had a few seizures over the last 8 months (seizures different from what you described- more absence type.) You sound inteligent and articulate. I just wanted to respond to your comments about when your doctor suggested you were stressed out/needing a psychologist and you were somewhat surprised/annoyed by that. Just make sure you deal with those emotions. It sounds like you have a lot of people around you who depend on you but you also must take care of your emotional needs. What you have experienced is life changing and frigtening for you. You are only human to feel stressed and all the things that come with that. When our daughter had a seizure that I witnessed from start to finish, initially I was so sad and then I went into mommy mode and got the rights docs, the right tests, the right meds etc. I was in such a mode and now that we are in a better place where I have taken care of what I can take care of, a lot of my emotions have been coming back--almost like post traumatic stress. It was almost like I had to be so strong and put my emotions aside. We all need to deal with our emotions and fears associated with this and you will be better to the people around you who need you and love you if you do. And you will be better to yourself. It is a great first step to start with this web site. There are so many good kind people who resond here.

Re: Re: Just wanna share - Thx in advance

Submitted by eame on Wed, 2006-07-12 - 22:30
ekoorb, thank you for your kind words. I agree and you are somewhat right b/c there were so many distraction that I did not deal w/ all of my emotions right away. But part of the reason was that I didn't have a clue what a life altering thing "this" was gonna be. I wasn't so pissed at the suggestion that I could be stressed but if you knew my Dr. you would understand. He really has a type of I can't be bothered attitude. I was simply interested in triggers and whether stress can be one since we are still at a loss as to what is causing my seizures. I do not deny that I am stressed. You are right, my post makes that very clear ...I just would've preferred that he not just brush me off like he did. This is one of the reasons why I am searching for another Dr. But thank you for posting what you went and are going through. I deffie see the value of sharing w/ you and others on this site. I actually feel a bit better just since posting last night b/c I now have an outlet.

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