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  #11  
Old 05-29-2008, 11:52 AM
lor lor is offline
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Partly I really don't understand why this is here. But the 1st one by Daniel is good because it tells US that we should tell ppl. --- Say Salsa has a sz, why would the witnesses want to know what to do in Waves' case. Should each of us print ? pages of discriptions & carry them, hoping someone will read it if ? has a sz. Printing a sz discription & what to do, could be helpful to give certain ppl that you pretty much think might see you have a sz. I got the info. on line (forgot what site. I bet EFA.com has it), printed it & gave it to a few of my neighbors. The dd & ds of one saw me have a GM, but my DH was there too. I told my kids to go get my other neighbor if I have a sz (I know it would be too late to help me durring the sz but it was nice to have her there afterward). Please don't think I'm saying this is a 'dumb' thread. I like the idea of telling all ppl what a sz is & how to notice & react to different kinds. I wish I would have told the ppl at my kids' school what to do (they knew I had E). I was in the lunchroom helping one day & had a SP. One lady took with me to the nurse & all I had to do was sit & rest. I felt I would fall in the hall because it was hard to walk, but I wasn't able to say anything at the time. The nurse didn't do anything but let me sit for a few minutes. It is interesting to me however, to read about my friends & what happens to them.
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  #12  
Old 05-29-2008, 01:37 PM
Toad Toad is offline
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Both threads are great, thank you Daniel.


1.) Do not call an ambulance for me either, unless it has gone on for more than a half hour with no ‘response’ from me; verbal may be gone so a nod counts as response. I tell anyone I am with this.
2.) I stop breathing (I am told) during CP, also normal. Obviously if I am turning blue that would not be normal.
3.) For the most part, do not ask me questions, answer them. Obviously if I am in a possible hazard situation, ask if you may help me, do so slowly, gentle and please do not let me get crowded.
4.) Silence is preferred, if not available, gentle music IF not with commercials.
5.) “Whoa” precedes and follows aura, SP, CP, drop, absence.
6.) “Sorry” stated repeatedly by me, simply means that I have had seizures. (I have noticed I do this frequently on forum posts.)
7.) The best place for me is a recliner, in a pinch a slightly reclined high-back vehicle seat with belt on, though not with vehicle in motion.
8.) As is the case with Daniel and Dan, I become quite disoriented (time and space), most often I ask where, what when and why questions, keep answers short and simple, unless I ask further. Dan and I became frustrated, just let it slide for me. It is a big deal; excusing it too me does not help; excusing for me does.
9.) Keep me hydrated, hard to remember this. Make sure that I eat. Everyone that I am around knows that I take my medications every four hours, very easy, reminding very helpful.
10.) Making certain my oxygen is within my reach helps greatly.
11.) Smile.






Naominjw,
Very good question, not certain that I have a good answer (yet), however, so far in this thread and past threads, it seems many have someone present who know whether to call or not (for ambulance). My suspicion is that it is that simple. However your question is one reason for such a thread.

For many here seizures can be daily, weekly and monthly. After the first few ambulance rides it becomes clear it was only needed if other injuries sustained or status.

Follow this thread as we hope it will soon reveal more for all of us.




Lor_raine,

With some luck, this type of thread will show (for example) consistencies and inconsistencies, in both cases I am already learning from both threads. Certainly the EFA has ‘something’ on this, personally I would rather hear from those here how they prefer to be dealt with; far more informative in my opinion, already.

Both threads have been informative for me.


Todd
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  #13  
Old 05-29-2008, 02:08 PM
dow4 dow4 is offline
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I agree with Todd, there is a lot of good info in this thread. I mentioned my son carrying a card to give to strangers. Someone else with an aura may have time to do something like that. Most of the readers here are not registered and may benefit from things written here. I have learned many things here over the years, some rather obvious, but someone else had to write it before it registered.
Also, it is interesting to me that every sz description here so far has been different. How often would a stranger or one of us know what is going on? The more we know the more we can educate others.
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  #14  
Old 05-29-2008, 03:01 PM
lor lor is offline
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Toad, I meant it can be for us. I was meaning something like...on the one hand, since I live in Ohio & if Jamie (my freind) sees me have a sz. it wouldn't help at that time for her to know that Salsa, one of my BrainTalk friends, in Iowa, has SPs (or whatever) & what she should do about it if she sees her.
Afterwards I could tell her what she should do if she sees anyone have any type of sz. (She can't know every single situation in the USA/on BrainTalk).
(BTW: I told her my situation & what she could/should do). Give them this http://www.epilepsyfoundation.org/about/types/index.cfm or something similar and tell them about you yourself. You may want to show them what other peoples sz.s are like. Yes, this info that we are giving each other, helps us.....not specifically Jamie or Kiva, though it may be interesting & good to Jamie to know how different we & sz.s can be (the fact that they are different is in the printout)
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  #15  
Old 05-29-2008, 03:36 PM
howdydave howdydave is offline
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Howdy!

As for what to do....
  1. Don't call an ambulence unless I am having status seizures
  2. Get any sharp instruments/utensils out of my hands
  3. Get me away from sharp edges (tabletops & counters)
  4. Get me out of the kitchen (if that's where I am.)
  5. Get me out of the middle of the street (if that's where I am.)
  6. Don't attempt to restrain me (One of us will get hurt!)
  7. Let nature take it's course
  8. DON'T TRY TO PUT ANYTHING INTO MY MOUTH -- "swallowing the tongue" is a myth!

As for me...
I always carry a list of my current medications in my wallet!
That way... If anything happens and I can't speak for myself there is
a list available just so that the EMTs don't kill me by giving me
something that will react with my meds.
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Last edited by howdydave; 05-30-2008 at 09:47 AM.
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  #16  
Old 05-29-2008, 05:32 PM
AncientWolf AncientWolf is offline
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Quote:
Originally Posted by lor View Post
Partly I really don't understand why this is here. But the 1st one by Daniel is good because it tells US that we should tell ppl. --- Say Salsa has a sz, why would the witnesses want to know what to do in Waves' case. Should each of us print ? pages of discriptions & carry them, hoping someone will read it if ? has a sz. Printing a sz discription & what to do, could be helpful to give certain ppl that you pretty much think might see you have a sz. I got the info. on line (forgot what site. I bet EFA.com has it), printed it & gave it to a few of my neighbors. The dd & ds of one saw me have a GM, but my DH was there too. I told my kids to go get my other neighbor if I have a sz (I know it would be too late to help me durring the sz but it was nice to have her there afterward). Please don't think I'm saying this is a 'dumb' thread. I like the idea of telling all ppl what a sz is & how to notice & react to different kinds. I wish I would have told the ppl at my kids' school what to do (they knew I had E). I was in the lunchroom helping one day & had a SP. One lady took with me to the nurse & all I had to do was sit & rest. I felt I would fall in the hall because it was hard to walk, but I wasn't able to say anything at the time. The nurse didn't do anything but let me sit for a few minutes. It is interesting to me however, to read about my friends & what happens to them.
Well, I stated the 2 reasons for this thread, but I will attempt to elaborate:

1. For us. This helps us to think about and write out how we would want folks to react during a seizure. That helps us to come up with a concise, but accurate way to tell folks and helps us make sure we don't leave things out when telling them.

2. For others. There are several uses for this for others. Many people are uncomfortable asking the person with epilepsy/seizures what to do and this can give some general guidelines (though it is still better to ask the individual by far.) In addition, it can be a huge help to educators and others who have to deal with people who they don't get to personally know. They may not know that someone in their care (class, etc) has seizures and this information may be of additional help along with the general rules (don't put anything into the mouth, don't restrain) that are found on foundation websites and elsewhere. Lastly, and perhaps most importantly, it helps others who don't have epilepsy or seizures get a better understanding of what we go through and may really help when they witness a seizure. I know one bit of advice that's never on the official lists that several of us have said and can be very important: Don't yell at us after a seizure. (and what I had said about not slapping me is incredibly important too.)

I hope that helps you understand why we started this. I know you didn't mean to be contrary and intended your post with good heart.



Namaste,

Daniel

P.S. to all: I requested that this thread be stickied. I wanted to note to the mods that if they think there's a better title for this thread when stickying it, feel free to change it.
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  #17  
Old 05-29-2008, 07:37 PM
Porkette Porkette is offline
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Hi Everyone,

What to Do:

If the sz. is an absence or cp sz. just let me carry on but if it's a myoclonic sz. make sure I won't fall and don't hold me down.

Let me concentrate and stop the aura sz. by tightening up my muscles and make my hands into tight fists.



What Not to Do:

Don't call an ambulance unless I'm having a status sz. and have been out of it for 20 min. or longer.

Don't send me home from work just because I had a sz.

Try not to be afraid of me when I'm having a sz.

Don't give me the AED's neurontin, lamictal, tegretol xr or trilpetal or I will get very sick.

This is a great thread! Thank you Daniel and thank you Everyone for sharing your Do's & Don'ts. Take Care and May God Bless All of You!

Sue
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  #18  
Old 05-29-2008, 08:53 PM
lor lor is offline
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Daniel, I get it. I already said I agree with #1 then in #2 I like the idea of educators 'knowing' about what to do. They can use the info to help teach too. When my dd was in 7th grade I went to talk to her class about E. The teacher was surprised about some of the stuff & took me to other rooms too.
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  #19  
Old 05-29-2008, 10:20 PM
AncientWolf AncientWolf is offline
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Quote:
Originally Posted by lor View Post
Daniel, I get it. I already said I agree with #1 then in #2 I like the idea of educators 'knowing' about what to do. They can use the info to help teach too. When my dd was in 7th grade I went to talk to her class about E. The teacher was surprised about some of the stuff & took me to other rooms too.
Lor, no problem. I respect you and just wanted to offer you that extra bit of information. You're a good person and I meant nothing ill by it.



Namaste,

Daniel
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  #20  
Old 05-30-2008, 12:50 PM
dogsmom dogsmom is offline
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I had no choice when it came to catching a ride to the hospital via ambulance! I had my tonic clonic in my primary care physicians' exam room and HE called in the troops. I remember none of it (seizure, EMTs, ER or all of the tests they performed.)

I now mostly have complex partials where I just stare and tug at my shirt, according to my hubby. Sometimes I try to leave the house to "go swimming" in the lake! Needless to say he follows me around each time I have a CP.

I've had 7 of the buggers this month.
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