On July 28, I had my first ever seizure at age 38 and it has really screwed me up. I was playing a video game with my daughter and that is the last memory I have. I have no visual memories of what happened at that time, just infrequent audio memories. Apparently I started seizing and "slobbering" and my husband after hearing my daughter screaming and realized that I wasn't playing and had turned blue called 911. At some point I became almost combative and he said that my eyes were wide open and started grabbing/hitting his legs. I don't recall any of this. I do recall hearing his voice telling me that I was having a seizure. The next memory I have is the paramedics telling me they were going to give me oxygen...still no visual. They took my vitals twice, poked me for blood glucose (which was normal) and apparently asked me questions and I responded. I told gave them my mothers name (I have no clue why) and when they asked who my husband was, I gave a name that was not his...Gabriel? I have no sort of recall for any of this (which I would expect to be normal, I don't know). I do vividly remember, and I know this will sound crazy...watching one of the EMT's roll the gurney into my house, I described the EMT to my daughter and she confirmed it was him. The gurney was bright yellow and had an oxygen cylinder on the bottom that had two bright green reflective strips. I recall seeing the ambulance with the parking lights flashing. There is NO way I could've seen this, I was inside talking to two other EMTS (I have no memory of this) and even if I had been looking out the window, i couldn't have seen this vantage point. I wasn't sure what was going on, but I remember watching him pass me with the gurney and think who else needs help? I've been told that they asked if I felt like I could get on the gurney and I told them yes and got up there. As they were rolling me out. I felt a jolt and then I remember seeing my two girls standing by the door and obviously upset. I had no clue what was going on or where I was going, but I told them I was alright. From there I remember being rolled to the ambulance (no visual of that). I do remember being loaded into the back and an EMT asked me what day of the week and what month it was. To me it felt like an eternity to get an answer to come to me and I think it was wrong. I remember seeing my husband and girls behind the ambulance and being taken into the hospital and having a ton of people working on me at once. From there my recall starts getting better. But I remember seeing a bandaid on my finger and asking what I did. I bit both sides of my tongue during the seizure and didn't even notice it until the Dr asked. I told him no, but when he looked, I had bit my tongue pretty good. I have had two smaller events since then, both occurring while laughing...my upper body started twitching and I started slurring my words and feeling funny, but NOTHING like the first. I saw a neuro and he is horrible. I had my husband take the morning off so he could answer questions about the first event and he didn't ask anything, I got the feeling that he thought I did something to bring this on and he was totally uninterested. He did order an EEG and MRI and told me that they came back ok. I saw him on Monday and he told me that it was "probably just a fluke thing and it probably would never happen again". I had to remind him that I've had two seizures since then and he started me on Keppra (which is horrid), but I told him great, if there is nothing wrong, I will stop taking the Keppra and then his story changed...then it was "well we'd like to see you seizure free for a year before we take you off the medication". I am looking for a second opinion as both my husband and I feel that this man is uninterested in what is going on and inept...but this whole experience has me totally freaked out. What if it happens while I'm alone? My husband thinks that I probably would be dead if he weren't here for this first seizure. Then there's the whole lack of memory or false memory thing that truly disturbs me. As a person that has a memory like an elephant, not knowing what happened during this time is really bothering me. I'm beginning to question if I've just gone crazy with thinking I saw what I saw with the EMT. I understand the brain is a powerful thing and it tries to make sense, but I find it odd to not have any visual recall of being inside, but perfect recall of seeing this EMT. I have actually thought of talking to him to verify the way he went into the house to see if I am correct. It wasn't like what I've heard near death experience or out of body experiences to be...I had almost no awareness. I didn't see angels or Jesus or feel euphoric. There was nothing. Did I fry my brain during this seizure? Has anyone else had this type of experience? I also have been smelling gasoline, not just ordinary gasoline, really rich oily gasoline. It started a couple of days before my seizure and has been pretty much continuous. When will that stop? Thanks for reading this far. I know I sound crazy, but I don't know what to make of this. I feel for anyone else that is going through similar things.

Welcome wendeelou.

Someone will be along to help.

Hi Wendeelou.I'm truebliever and my 34 yr special needs daughter has had seizures her whole life.First no you are not crazy.What I read you had a grand mal seizure,and no you haven't fried your brain.Everything you saw and heard did happened.I believe you 100%.My daughter can't recall a lot for a few days,yet when she does she tells me things she saw.when she had to a cpr and the paddles she told about seeing and hearing it all,even telling me about the paddles.You said you smelled gas days before,that was a warning,most people get a weird warning of sorts.Please try and calm down dear.You did not do anything to bring this on,and you are not alone.No one wants to have seizures.If you can get visit another dr.and see what they say.most of my daughters test came back fine,including in house EEG.The harder the seizure the worse short term memory loss.The med you are on takes time,and it might not be the one you stay on.I know this is long sorry,but I felt like I needed to write you.Please stop blaming anything or anyone.I'm here Wishing you well.Truebliever

wendeelou,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

My advice to you is to start seeing an Epileptologist at an Epilepsy center you can find these Drs. at large hospitals or university hospitals these Drs. specialize in epilepsy and can run some tests on you like another e.e.g., MRI, CT scan PET or SPECT scan to find out what's going on. Start keeping track of each time a possible sz. happens write down what time it happens on a calendar along with a description of the sz. this will help the Dr. see if you have a pattern in your sz. if they happen at certain times of the day or night and what days of the month. As far as being moody that can happen from either the med or the area of the brain that is triggering the sz. Try taking vitamin B12 1000 mcg. once a day for adults. Cut back on the carbs and starch foods and stay away from anything with nutra sweet because the nutra sweet causing more electrical activity in a persons brain and can trigger sz. sometimes. Something else you should do is if you go to the theater for a movie, shut your eyes and turn your head when they have flashing light coming out. This can cause a seizure to start. While playing the game with your daughter, if it had bright flashing lights going on that could of triggered to seizure.

On the topic of medicine, what one medicine will help one person it will not work for others. I am taking Kepra and I seem to be doing ok.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Wendeelou,

I've had epilepsy for 42 yrs. and Darlene gave you some great advice. I've seen many neuros over the yrs. but when I started seeing an Epileptoloigst I got the best help ever since these Drs. specialize in epilepsy. You should have your family Dr. refer you to one and they can do detailed testing on you. It sounds like you may have had a grand mal (tonic clonic) sz. and it's normal for a person who has sz. to forget what is going on and be forgetful because you are out of it. I am wondering if playing the video game with your daughter may have brought on the sz. It has been proven that some video games with a lot of bright flashing lights will trigger sz. for some people this is known as being photosensitive which means certain colors can cause sz. for some people. I had this problem until I had brain surgery a few yrs. ago I would see the colors fluorescent green, amber or bright white like the sun shining on the snow and it would cause a sz. for me. As far as the gas smell that is what is called an aura (simple partial) sz. it happens to me often I will smell weird odours right out of the blue for no reason. The next time this happens get a cold washcloth and put it on your face and the back of your neck a couple of times during the day this helps calm the neurons down in the brain and stops it from leading to a sz. It's known as cold water therapy.
Depending on your age this may have happened do to hormones changing. Often when a woman goes through her monthly cycle or her change it can sometimes cause sz. or stop sz. depending on the woman. All of this happens because the estrogen level increases causing more excitement in a womans body when it's that time of the month while the progesterone level decreases and progesterone helps calm the nerves. Start eating almonds or lightly salted peanuts if this could be the cause, they have progesterone oil in them and they can help you reduce your sz. if you think it may be hormone related.
Make sure you get plenty of rest and don't get over stressed these are the 2 main things that can trigger sz. also there are times when a low pressure in the weather may bother some people the air gets heavy which in turn bothers the hormones and then the sz. start up. Keep track of any sz. and write them down on a calendar be sure to write down what time the sz. happened along with a description of the sz. this will help the Dr. and they may see a pattern in your sz. I always have sz. the 1st and 3rd week of each month and I have more in the fall and winter compared to the spring and summer because there's less serotonin in the fall and winter. Sorry for carrying on so long. Here's wishing you only the best of luck and May God Bless You!

Sue