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Medical Forum / Diseases and Disorders / Epilepsy / February 2005How bad can it be?
What is or was the worst thing you feared while getting control of seizures? Mine included a feeling of 'guilt' (often from others around me) that somehow I should be able to control them, when I knew one was on the way. Sometimes the Aura, Onset and waking on the floor happened too quick to react to. Other times there was a Panic Sensation, that can also happen with some of the seizure types (including Temporal Lobe ones), that I had to get away from wherever I was so I could have the Onset in Private, since most people didn't know what to do anyway. As I got nearer to full control, I also wanted to move away to somewhere cooler, since I was later able to weather it out as just the heavy dizzy, swirling, Twilight Zone type phase, and if I got somewhere Cool or got a cool drink (even water) it seemed to clear the aura without getting worse. Part of the Complex Partial aura (older Temporal Lobe type), if in right side is a strong Lemon or Sour taste or aroma, that's not real but seemed to be. So above water or cold drink of any Pop, that would stifle the Lemon taste, would also help the aura to clear without getting worse. Any other tricks anyone developed that helped? G./ > What is or was the worst thing you feared while getting control of > seizures? The worst thing was thinking the medication would never be able to control the seizures and I would have them the rest of my life. That thought got me really down in the dumps. That same thought keeps coming back every time I have seizures, but in between the batches of them I'm fine. > Mine included a feeling of 'guilt' (often from others around me) that > somehow I should be able to control them, when I knew one was on the way. > Sometimes the Aura, Onset and waking on the floor happened too quick to > react to. Have the same experience with them coming on so fast you don't have time to plan or execute an escape or even find a chair to sit in to wait it out. Sometimes I wanted to lay down on the floor right then and there but couldn't do it. Sometimes it wasn't a safe place to just crash, but there were other times when demands from other people (like at work) who didn't know I just had a seizure kind of hit the guilt area of my mind and kept me from doing it. Other times there was a Panic Sensation, that can also happen > with some of the seizure types (including Temporal Lobe ones), that I had > to get away from wherever I was so I could have the Onset in Private, since > most people didn't know what to do anyway. In my early years with seizures I had the panic attacks and the need to get out of the environment I was in. I wonder how common that feeling is. > As I got nearer to full control, I also wanted to move away to somewhere > cooler, since I was later able to weather it out as just the heavy dizzy, [quoted text clipped - 5 lines] > taste, would also help the aura to clear without getting worse. > Any other tricks anyone developed that helped? My funny smell is different than yours. I have never found a solution to that. I never found any way to prevent seizures, but I can make the time in between them a little more comfortable. Folks who are reading this for the first time or don't remember, my seizures generally come in bunches that lasts for a couple of days. Between seizures I can rest and avoid noise and visual stimulation. I try not to take naps during those times because I'll probably have another seizure as I'm dozing off. As I've said many times, I do talk to myself silently and keep telling myself that the seizure activity is doing all this stuff to me and my feelings. There's only been one time that I told somebody that I felt a seizure coming and they were able to give me helpful instructions. I had been cutting onions with a very large knife when the seizure started, and my friend told me to put down the knife. That was one of the most comfortable seizures I had. She had the right intention, the right attitude, and knew how to handle the situation. Barb G./ I am so ashamed that when i have them i seem to freak out, i hear that i was begging my coworkers to not let the emt's take me. i dont seem to have any warning just WHAM on the floor. > What is or was the worst thing you feared while getting control of > seizures? [quoted text clipped - 15 lines] > taste, would also help the aura to clear without getting worse. > Any other tricks anyone developed that helped? G./ >I am so ashamed that when i have them i seem to freak out, i hear that i >was > begging my coworkers to not let the emt's take me. i dont seem to have any > warning just WHAM on the floor. There's nothing to be ashamed of. I can understand that some people might be frightened. When I feel a deja coming on - although I know it's not going to lead anywhere (well it hasn't to date!) and that it will only last a couple of seconds and nobody else can see anything, I always say: Oh no, not again ... sometimes aloud. But nobody should be ashamed of something you have no control over. Mary Mary That is exactly the phrase i saw when i have a migraine " oh no" and i dont even seem to realize i am saying it piper Some weblinks you might not have seen a few days ago, that have useful information about seizures. You can likely find your seizure type there (sounds like Complex Partial like mine?), and it shows that we're not aware of what we say or do while 'away'. If it would help any of them you could print the page, so they'd see how 'easy' it is to make your return more comfortable and quick, compared to getting into a panic about what to do. The main First Aid site I use (Julie put together for us, and Idaho) is --> http://www.epilepsyidaho.org/seizure.htm . (Check the description of 'what we do' for each type. That's why I thought your's would be either Complex Partial (Temporal Lobe) or Grand Mal from description.) If in water (swimming etc.) at seizure onset, there's some differences what to do, that I think are described at http://www.epilepsyidaho.org/seizure2.htm . Learning about Epilepsy for people newly diagnosed or helping others understand. http://www.epilepsyidaho.org/learn.htm , and the General doorway that eventually links to all above but may have other stuff for people near to Idaho is at http://www.epilepsyidaho.org . Those have lots of useful stuff about taking the 'edge' off learning to handle seizures for people newly diagnosed and people around us -- family and co-workers, etc. If any Medications are prescribed, the U.S. Ep. Foundation has a large database of info. but also a Medications Glossary within http://efa.org site. G./ >I am so ashamed that when i have them i seem to freak out, i hear that i >was > begging my coworkers to not let the emt's take me. i dont seem to have any > warning just WHAM on the floor. thanks, i think i am going to print that off for my area at work. piper I guess mine would be that I am going to go into such a deep depression that I am going to hurt myself or someone else during a seizure. My PWTS doesn't help probably.... owlvee :) > What is or was the worst thing you feared while getting control of > seizures? [quoted text clipped - 15 lines] > taste, would also help the aura to clear without getting worse. > Any other tricks anyone developed that helped? G./ > I guess mine would be that I am going to go into such a deep depression > that I am going to hurt myself or someone else during a seizure. My PWTS > doesn't help probably.... > owlvee :) I get that feeling I could hurt someone else, but it seems to happen as part of the parnoia/fear thing and is present between seizures (when I have groups of seizures) instead of with the seizures. That deep depression from seizures is really amazing isn't it. Maybe it's a good thing we get so tired after a seizure or we might actually do something we shouldn't. Barb >> What is or was the worst thing you feared while getting control of >> seizures? [quoted text clipped - 18 lines] >> getting worse. >> Any other tricks anyone developed that helped? G./
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