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i need help ive hit a dead end

Tue, 10/02/2007 - 15:58
i was at a consultant neurologist today and i was hoping to get some answers and i didnt, i was hoping someone on here might be able to help because i really cant cope anymore. he said it isnt epilepsy yet im having all these seizures what the hell is it then they are telling me what it isnt but just dancing round the topic of what it actually is. i took along 2 a4 pieces of paper that i had written down everything i experience and how i feel when i am having them which he didnt even read, do these people not know that your memory just goes to pot when you have these attacks. anyway im going to put a copy of what i wrote on these pages on here and if anyone has any feedback or similar experinces i would love to hear from you. im very new to this and not sure if i will be able to get back in to find your replies so my email address is michelledupree@hotmail.co.uk if you can help me in anyway it would be greatly appreciated. The very first episode I had was back in October 2001 if I remember correctly, I was sitting watching a movie with my sister when all of a sudden their were these tiny balls of light floating in front of me they were very bright. I just sat and watched them they were beautiful it was as if they were dancing in front of me then I tried to catch one, I just wanted to hold one to see what it felt like but when I did I somehow must have disturbed them and they started attacking me I was immediately filled with fear it started in my stomach and soon I felt it all over my body like my blood had all of a sudden started to run cold. Yvonne brought me round at this point it kind of felt surreal the way she just appeared, it was like a dream like I had been in this different world and she brought me out of it her familiar voice brought me out of it, that’s the only way I can describe it. I almost knew what she was going to say before she said it I felt like I had somehow been in that moment before even though I hadn’t and I remember her asking me what was wrong and that I was scaring her, even though I remember her saying that to me it didn’t make sense and I don’t think I could respond to her I had forgotten how to speak and vaguely remember trying but it sounded mixed up. I carried on watching the movie but the lights came back this time they were closer to me right in my face they were attacking me again I was filled with so much fear as I kept dodging out their way they were like bullets going for me and I was scared of what would happen if one hit me. That was pretty much my feeling during the whole thing. I was so scared so filled with fear that I thought I was going to die I don’t know why I felt like that and it seems a little over the top but my actions and behavior seems to border on irrational when I’m having one. Then one flew straight at me and I caught it to stop it from hitting me and they all disappeared they floated to the ground like snow but when I looked at the floor to see what had happened to them all that was lying there was my step-dads hair as if he had just had a haircut it was horrible and disgusting and made me feel sick I just wanted away from it I wanted it to go away, Yvonne entered back in and I told her their was hair all over the carpet and I didn’t like it and she said there is nothing there and when I turned around it was gone that’s all I remember then I woke up in hospital and was told I had had a fit in the house and about 4 more when I was in the hospital so they had put padding round my bed so I wouldn’t hurt myself . I should have kept note of dates but I didn’t I had another one when I was studying for my exams in university it was maybe August last year I have had more in between these dates but these are the most vivid ones, I had went for a power nap because I didn’t feel well but just put it down to the fact I had been studying to much. The next thing I remember the paramedics were in my room taking me to hospital everyone I loved was there my mum, my sister and my partner but I didn’t know who they were or what they were doing and felt like they wanted rid of me and that’s why they were sending me away with these men I was very confused and extremely upset my emotions seem to be heightened during them even the silliest of things can make me sad and angry it feels like a dream or an out of body experience I feel like although it is happening to me I am seeing it through someone else’s eyes and acting in ways I wouldn’t act it just feels so surreal. This time my memory was affected I couldn’t remember simple things like where I lived and what day it was I had such an overwhelming feeling of confusion and that everyone was against me like it was them who was wrong and I was right they were messing with me somehow I felt strong feelings of distrust towards the people I trust more than anything in the world, I can’t remember if I actually had a fit during this one, they all kind of start a similar way with some sort of overwhelming feeling or emotion but I don’t always have a fit. Another one I remember was when I was lying in bed with my partner and I was upset I cant remember why I was upset but I was upset anyway and the next thing I knew it was like I had frozen I remember staring at my partner but couldn’t utter a word it was like someone had pressed pause on my remote control I couldn’t move I couldn’t talk I couldn’t respond in anyway whatsoever, it was like the dreams you have when you are paralyzed and you need to get away from something really scary but your whole body is frozen to the spot. That’s what it was like inside I was growing more and more upset and the only thing I could do was cry I could feel the tears rolling down my face but I couldn’t do anything. My partner doesn’t really know how to deal with me when I have them, which is understandable. I act in ways that make her think I don’t love her and say really mean things on occasion but that’s not what I feel, it all just gets messed up somehow and comes out wrong or else I feel like nobody wants to help me and push them away, even though I really need help, it makes me think I am going crazy. Eventually I wasn’t frozen anymore and because I had felt like she wasn’t helping me I was convinced I was going to walk up the hospital and get help myself but I didn’t know how to get there even though I have been before lots of times in the moment I just didn’t know or couldn’t find in my brain directions how to get there I was angry because I couldn’t remember and was taking it out on her then my sister stepped in and eventually they managed to calm me down enough to get me back into bed. My sister was pregnant at the time and I remember lying back in bed feeling very confused and exhausted for want of a better word my head always feels like its going to burst like its on over drive and I cant find the off switch. I asked my sister where Jodi was, now I don’t know anyone called Jodi so I have no idea where that came from but I was convinced that my sister had already had her baby and it was called Jodi, she kept pointing at her stomach and saying she’s in here she hasn’t been born yet but again I couldn’t comprehend what that meant my niece was called Jodi she wasn’t in her stomach she was already born in fact she was already about 1 year old. I looked at them both and they were laughing who wouldn’t and I just came to the conclusion that they were hiding her from me that because I had these episodes I don’t know what else to call them no-one has given me an answer yet, and I was upset I couldn’t believe they wouldn’t bring in the one person that I know would make me feel better, they were keeping her from me probably to protect her incase I hurt her if I had a fit when I was looking after her, that’s a fear I did have in the real world they seem to bubble up and intensify during these episodes like all my insecurities just come up to the surface as well as some other things that I don’t know where they have come from because its not my way of thinking, its not how I feel and its certainly not the way I act but all these things happen to me and they are out with my control and they are scary. I have had more but these are the main ones, I think, I’m not sure my memory isn’t the best anymore its like even though I know the difference between these two world they are so similar and familiar that my memory doesn’t know the difference. I seem to find myself, somewhere between being awake and dreaming that’s what it feels like to me and this is my take on things but the people that witness them I’m sure have a very different take on them and I’m not even sure if I remember half of this stuff or if I have just been told about it so many times now that it seems like a true memory to me.

Comments

Re: i need help ive hit a dead end

Submitted by karolina on Tue, 2007-10-02 - 17:32
This sounds to me like seizures becuase of the aruas you described with some type of psychosis going on. Have you done an EEG yet? I'm guessing they did when you were in the hospital. Sometimes that catches a true seizure and sometimes not.

Re: Re: i need help ive hit a dead end

Submitted by michelledupree on Wed, 2007-10-03 - 07:31
i have had an mri scan done which didnt show up anything which was good, i have had 2 eeg done they both showed abnormalities but nothing conclusive. the second one i had done was videod and although i didnt have a seizure they think i was at the early stages of having one even though i dont think i was going to have one at all and as a result have made a dianosis based on the fact that apart from some slowing in brain activity nothing of any real importance showed up. i really do feel like im going crazy i seem to enter into this dream world where everything feels the same but different, its like the feeling of deja vu where you feel you have been in that moment before but you havent. its so bizarre, i should have been on here a long time ago who best to talk to than the people that experience it themselves instead of doctors who think they know it all

Re: Re: Re: i need help ive hit a dead end

Submitted by bernardcwe on Wed, 2007-10-03 - 09:03
Hi Michelle, there are a few things you can experiment with that might help (diets, neurofeedback) and won't hurt. See the chart linked below in my signature for more information. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Check out my chart of alternative epilepsy treatments.

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