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Old 05-28-2008, 09:13 PM
AncientWolf AncientWolf is offline
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Post Handling Seizures (Information for Seizure witnesses from Braintalk members with E)

Hi folks,

Todd, our beloved Toad, suggested this thread based on another thread I had started and I think it's a wonderful idea. This thread serves 2 main purposes: 1. It allows those of us who have seizures to talk about what we would want done if we were to have a seizure. 2. Perhaps most importantly, it is a source of information for people who know someone with a seizure disorder so that they will better be able to handle it. If any of you have the list of "dos and don'ts" (such as never stick anything in the mouth) that would be an excellent addition to this thread. I believe that list is elsewhere on Braintalk, but I think it should be included in this thread where we talk about what we would personally want done.

Please note which type(s) of seizure you have (description if you don't know the name for the type) and how you would want each type of seizure handled whether in public or private. Hopefully this will become a good resource for folks.

Namaste,

Daniel
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Old 05-28-2008, 09:33 PM
AncientWolf AncientWolf is offline
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Of course, since I started this thread and want y'all to respond, I should also post my responses. Here goes:

I do not know the names of my seizure types, but I will be descriptive (based on witness testimony as I do not remember them at all.)

First with auras:

For those who don't know, an aura is a feeling some people with epilepsy get before they have a seizure. They can take many forms. For me it's just a feeling of being "out of synch with time" and not being able to think clearly. I may start rubbing my face vigorously. An aura is usually considered a small seizure before a larger seizure.

What to do if I say I'm having an aura or you notice one:

First, as I said, you'll recognize it partly because I may be rubbing my face vigorously. However, I may also be silent and seem distant.

The only thing you have to do is make sure I'm alright. Ask me if I'm having an aura. If I don't respond or if I say yes, then try to get me to a safe place if I am not in a safe place for a seizure.

Main Event:

The main kind of seizure I have is one where my eyes roll back into my head, I stiffen up and start shaking all over. Sometimes my arms flail and sometimes I just gently shake. It usually takes me a few minutes after the seizure before I am able to talk and it will be barely a raspy whisper at first. I do not loose complete consciousness, but I do have trouble seeing, hearing and speaking afterwards so it may seem like I am unconscious to some people.

What to do:

If I am seated, make sure I do not fall out of my chair. If it is possible to safely lay me down, please do so. Do not restrict my movements, but do be sure I do not injure myself. Never slap me as that will do more harm than good. Slapping will not bring me back to consciousness and the unexpectedness of it may trigger further seizing (it has happened according to witnesses. ) If possible, remove my watch and loosen anything else tight I have on, but only if it will not risk injury to you or I.

When I am coming out of it, talk to me softly and gently. When I want to stand up and walk around afterwards I may need some help doing so. By all means, help me stand up and walk around if you can and are willing to do so. I've found that the blood flow helps things "normalize" for me quicker. If you choose to help me stand and walk around I will need you to help me stay on my feet, usually by taking my shoulder or arm. Walk me towards a comfortable place to sit because I won't be walking for too long. I will probably be extremely emotional afterwards. The emotions are a result of the seizure and you should not be insulted or worried about anything I say; though, I understand that usually I am quite grateful and will not say anything mean. I will probably be crying, but it is purely a seizure response and not backed by my "normal" emotional state.

I do have other kinds of seizures, but this is a good starting place since it is the one I have most often.

Namaste,

Daniel
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Old 05-29-2008, 12:16 AM
howdydave howdydave is offline
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I usually have simple partials (which nobody notices except for me),
complex partials and (on very rare occasions) tonic clonics.

My first piece of advice is always:
DON'T CALL FOR AN AMBULANCE!

Just "let me do my thing" and I will be fine in a few minutes.
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Old 05-29-2008, 01:12 AM
waves waves is offline
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Thumbs up just want to say

this is a great thread... (so is the other one Daniel).

i will be a regular reader as these issues have been close to my heart for... longer than most of you probably know.

keep posting guys and gals!

~ waves ~
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Old 05-29-2008, 01:29 AM
AncientWolf AncientWolf is offline
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Quote:
Originally Posted by howdydave View Post
I usually have simple partials (which nobody notices except for me),
complex partials and (on very rare occasions) tonic clonics.

My first piece of advice is always:
DON'T CALL FOR AN AMBULANCE!

Just "let me do my thing" and I will be fine in a few minutes.

Oh dear gods I can't believe I forgot to include that in my own list. That is probably my biggest beef. I get so tired of being stuck at a hospital scrounging for a way home just because I couldn't speak or think clearly enough to stop them from taking me. They can never do anything for me at the hospital and I don't need it unless I seriously injure myself during the seizure (which has never happened....knock on wood.)

Namaste,

Daniel
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Old 05-29-2008, 07:19 AM
Naominjw Naominjw is offline
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Just saying... I was glad that when my older daughter first had a seizure out in public (alone at a restaurant) we were grateful that people called an ambulance. Neither she, nor we knew she was having them, because they'd been happening in her sleep. She didn't know they were happening, and if she had not been taken to the hospital and told, she would not have believed it. It turned out that it was a medication causing them.

OK... so the point.... How do we know whether to call one or not, since we can't know if it is someone's first. Like I said, for her first.... we were grateful.
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Old 05-29-2008, 07:19 AM
Salsa Salsa is offline
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The best thing a person can do for me is take me some place safe. Sit me down away from anywhere I might hurt myself-- and just be there for me. Don't leave me alone. And stay with me even after the seizure seems to be over, especially if I'm not totally with it because it's frightening to be alone when you're confused. Also, I might go into another seizure if I'm still post-ictal. Don't worry if I can't talk for a while. I'm coherent again much sooner than I am able to verbally communicate. (I can talk in sign language when I'm post-ictal, but I might not be talking for another half hour). That's normal and I'm all right.

Let others around me know that I'll be OK. Don't go calling an ambulance-- unless it's gone on for a long long time. The seizure will probably be over by the time the EMT's come anyway and I already owe the hospital because wanted to "play it safe." I once had a well-meaning friend start praying over me-- with a loud voice too. That scared me. Please don't be loud. Just be supportive.

One other thought: I've had simple-partial seizures in the past (before my surgery) where I would get extremely paranoid and didn't want people near by me-- and I would tell them so. Please honor that if someone asks you to stay at a distance. Still, I would ask family or friends not to leave me alone but not to get to close to me either because it would frighten me. FWIW, when my mom would/could get close enough to me to hold my hand-- but not restrain me. It was weird because I'd still be paranoid, even of her, until she finally was able to touch me and then it felt comforting. That could only be someone I felt really safe to be with, though. (Family, close friend, teacher).
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Old 05-29-2008, 07:41 AM
LIZARD LIZARD is offline
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Quote:
Originally Posted by howdydave View Post
I usually have simple partials (which nobody notices except for me),
complex partials and (on very rare occasions) tonic clonics.

My first piece of advice is always:
DON'T CALL FOR AN AMBULANCE!

Just "let me do my thing" and I will be fine in a few minutes.
Agree completely. 99.9% of mine are SPs and are over within about 30 secs (especially now, since I started magnesium). They're nothing to worry about. I also haven't experienced any GMs since going back onto a low dose of phenobarb 2 years ago and don't have any annoying side effects.


LIZARD
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http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
http://health.groups.yahoo.com/group/autism-chiari/

Last edited by LIZARD; 05-29-2008 at 11:09 AM. Reason: Trying to type B.C. (Before Caffeine) doesn't work!
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Old 05-29-2008, 10:35 AM
dow4 dow4 is offline
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Yes, good idea, my son has complex partial sz and raises his right arm, fist clenched, and his body turns to the left. If sitting he may also pull his legs up trying to sit indian style. We watch him and try to keep him in a chair, a sturdy chair or couch is best. We hold him down a little bit if necessary.
He has an aura so has time to get to a safer place and if around strangers give someone a business size card with basic info about sz, what to do, how long, etc and not to call an ambulance. Medic Alert bracelet sometimes helps but is usually not noticed.
As the others have said, when the movement stops there is still a period of awakening and tiredness to get over.
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Old 05-29-2008, 11:02 AM
satman next generation satman next generation is offline
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Great thread Daniel:
My primaries are SP's and I will tend to lose my train of thought as a result and become very frustrated, so just try and calm me down, slow me down, guide me back. Also, on occasion, I will become slightly disoriented (time and space), so again, help guide me back, reassure me. I also have Tonic Clonics and with those....make sure I don't hurt myself or something else (my last one, I obliterated our keyboard, mouse and keboard drawer), also, as I come out of it, reassure me, I've been known to "freak out. Also, time and observe my seizure, so that I can report this to the doctor. Those are my "do's".
God Bless....In HIS Service....Dan
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