Hi
I'm not sure if I get auras, I feel faint and dizzy, I'm not
sure.
Regards
Adrien
You can get me off list at:
adriencollins22160@
or
adriencollins22160@
or
adrien.collins@
Speakon is a free fully self-voicing accessible multimedia
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the visually impaired, find out more by downloading the
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-----Original Message-----
From: epilepsy@yahoogroup
[mailto:epilepsy@yahoogroup
Seagraves
Sent: Tuesday, June 09, 2009 6:22 PM
To: epilepsy@yahoogroup
Subject: RE: [epilepsy] Re: New Here
Hi Adrien,
The description of your mild seizures (storms) sounds
like it could be complex partial seizures with myoclonic
jerks. Do you get strange feelings (auras) before your
storms?
Oh, just a coincidence.
Scottish festival. It's just entertaining watching men play
sports in kilts. :)
Later,
Tristin
--- On Tue, 6/9/09, Adrien
<adriencollins22160@
<mailto:adriencolli
From: Adrien <adriencollins22160@
<mailto:adriencolli
Subject: RE: [epilepsy] Re: New Here
To: epilepsy@yahoogroup
<mailto:epilepsy%
Date: Tuesday, June 9, 2009, 10:31 AM
Hi Mylmy
I'll try my best to describe what I call a storm. My
epilepsy is well controlled with tegretol or carbomazapine
(please excuse the spelling). When I have full fits which
isn't very often thankfully I stop breathing, go blue, my
arms jerk, so with the drugs, all of this is stopped but a
few times a year I get a storm, this is a masked fit, very
mild, none of the major symptoms, I feel very tired,
irritable, depressed, my concentration goes out the window,
but if I wasn't on the drugs, I'd be having more full fits.
To me a storm is just a very mild fit. My arms jerk, my
speech goes very bad, I just have to shut down and wait for
it to pass over, it could be two or 3 weeks building up, and
just as long calming down again. I get very fed-up, I am
trying to think how else I can describe it. I also get very
head achy. It's nothing like the full blown seizure I have
and my last full one in in 1997. Although these are mild szs
they in themselves can be bad enough, I just have to cope
with them and rest, no computers, just be quiet, I'd be
interested to know if other people have szs like this
My family come from the south of England but have moved
around quite a bit, we last lived in the northeast of
Scotland, the climate here is far better than up there.
Regards
Adrien
You can get me off list at:
adriencollins06@ aol.com
or
adrien_collins@ yahoo.co. uk
Or
adrien.collins@ orange.fr
Speakon is a free fully self-voicing accessible multimedia
program for the visually impaired, find out more by
downloading the software from:
http://www.a- technic.net/ speakon.htm
You can join the speakon user group by sending a blank
e-mail to:
speakon-subscribe@ yahoogroups. com
-----Original Message-----
From: epilepsy@yahoogroup s.com
[mailto:epilepsy@
mylmy@bnin.net <mailto:mylmy%
Sent: 09 June 2009 15:59
To: epilepsy@yahoogroup s.com
Subject: RE: [epilepsy] Re: New Here
Adrien,
What do you mean by having storms? What happens?
Where were you before you came to France?
Millie
> Hi Mylmy
>
> Ok I am mail.
>
> Yes I have a talking computer, plus I have a new netbook,
Computers
> are my main interest nowadays. I help maintain all the
pc's in the
> house and Have taken on the computer of a computer
illiterate friend
> round the corner, he asks me how to sort things on his pc,
and it's
> good, it helps keep me busy and occupied. Having the
different
> disabilities, if you are not careful, you can soon get in
to a rut and
> get very depressed, it's very easy to let yourself go but
keeping
> occupied with talking books, magazines, computers, music,
the radio
> and of course learning french helps to keep my mind busy.
Besides,
> life's just far too short!!
>
> When I came to France, I got on ok because my name is
french so it's
> easy for them to say.
>
> Epilepsy is strange, you can have nothing for months and
in my case
> years, my last major sz was in 1997, but I still have the
storms. In
> fact the neurologist thought it was migraine but it
definitely isn't!
>
>
> Regards
>
> Adrien
>
> You can get me off list at:
> adriencollins06@ aol.com <mailto:adriencolli ns06%40aol.
com> or
> adrien_collins@ yahoo.co. uk
<mailto:adrien_ collins%40yahoo. co.uk>
> Or
> adrien.collins@ orange.fr
<mailto:adrien. collins%40orange .fr>
>
> Speakon is a free fully self-voicing accessible multimedia
program for
> the visually impaired, find out more by downloading the
software from:
> http://www.a- technic.net/ speakon.htm
> <http://www.a- technic.net/ speakon.htm> You can join the
speakon user
> group by sending a blank
e-mail to:
> speakon-subscribe@ yahoogroups. com
> <mailto:speakon- subscribe% 40yahoogroups. com>
>
> -----Original Message-----
> From: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> [mailto:epilepsy@
<mailto:epilepsy% 40yahoogroups. com> ]
> On Behalf Of mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
> 40bnin.net>
> Sent: 09 June 2009 01:02
> To: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> Subject: RE: [epilepsy] Re: New Here
>
>
>
> Hi Adrien,
>
> You have got a lot on your plate -- but you don't
complain.
> You are fortunate that you can live with your parents --
although I'm
> sure there are lots of times you would like
to
> be on your own.
>
> Do you have a computer that talks to you? I knew a guy who
was a
> accountant. He was blind and his computer talked to him.
>
> When I was diagnosed (DX) 47 years ago my doctor told me
that I could
> be without szs for 20 years and they may come back. For
that reason I
> decided to would always stay on my meds.
>
> When I was DX 47 years ago I had 3 daughters 2, 4, and 6
plus a
> husband (now ex). I've learned a lot from this
group.
>
> By the way-- are you male or female? In the US it could be
either.
>
> Millie
>
>> Hi Mylmy
>>
>> Ok thanks for welcome to the group.
>>
>> Ok I live in France. I am 40 years old, live with my
> parents because
>> of my disabilities, I am totally blind, in a wheelchair
> and am
>> epileptic. All this is because I had encephalitis when I
> was 6 years
>> old which left me like this but you have to put it behind
> you as much
>> as possible and I have done just that. Ok I have bad days
> and very
>> good days but in the main good ones.
>>
>> I have the three disabilities but to be honest the
> epilepsy is the
>> worst because I never know when it's going to play up. I
> have lots of
>> things I would like to know about it, and I hope from
> being a member
>> of this list I perhaps would get some of my questions
> answered.
>>
>> For example, when I Neal down to do anything for any
> length of time, I
>> start to feel fitty , I have only had major seizure when
I
> have been
>> kneeling. On one occasion I was on the floor sorting out
> my book shelf
>> when I had a fit, what is causing this, is it lack of
> circulation?
>> Nothing may happen but if I meal I can guarantee that the
> next day I
>> am going to be fitty.
>>
>> I know my epilepsy is a result of the encephalitis, and
it
> happened
>> over 30 years ago and the epilepsy went away for about 10
> years but
>> suddenly returned in 19988 and for good in 1992, that's
> when it
>> started getting very bad and they had to put me on
> tegretol. Why did
>> it go away and then return?
>>
>> I'll just tell you how the epilepsy effects me, firstly I
> have
>> grandmal seizures, I have to take 1000 mls of tegretol
> retard daily. I
>> get headaches, my arms jerk, my concentration goes,
tired,
> irritable
>> and many other symptoms. If I'm not careful I stop
> breathing.
>>
>> Ok that's enough about me for now, I look forward to
> reading your
>> responses. I'm find to find this group very interesting,
> thanks for
>> letting me join.
>>
>>
>>
>>
>> Regards
>>
>> Adrien
>>
>> You can get me off list at:
>> adriencollins06@ aol.com
<mailto:adriencolli ns06%40aol. com>
<mailto:adriencolli ns06%40aol. com>
>> or
>> adrien_collins@ yahoo.co. uk
<mailto:adrien_ collins%40yahoo. co.uk>
> <mailto:adrien_ collins%40yahoo. co.uk>
>> Or
>> adrien.collins@ orange.fr
<mailto:adrien. collins%40orange .fr>
> <mailto:adrien. collins%40orange .fr>
>>
>> Speakon is a free fully self-voicing accessible
multimedia
> program for
>> the visually impaired, find out more by downloading the
> software from:
>> http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm>
>> <http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm> >
>> You can join the speakon user group by sending a blank
> e-mail to:
>> speakon-subscribe@ yahoogroups. com
<mailto:speakon- subscribe% 40yahoogroups. com>
>> <mailto:speakon- subscribe% 40yahoogroups. com>
>>
>> -----Original Message-----
>> From: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> [mailto:epilepsy@
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com> ]
>> On Behalf Of mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
>> 40bnin.net>
<mailto:mylmy% 40bnin.net>
>> Sent: 08 June 2009 17:41
>> To: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> Subject: RE: [epilepsy] Re: New Here
>>
>>
>>
>> Hi Adrien,
>>
>> Welcome to our group. Tell us about your self. I too am
controlled
>> but I have learned a lot from this group.
>>
>> Millie
>>
>>> Hi
>>>
>>> I am also new to the list and I just wanted to say high
> to
>> you all.
>>>
>>> I have epilepsy myself and although it is well
controlled
>> I do have
>>> problems with it so I'd be interested to read your
>> messages over the
>>> months ahead.
>>>
>>>
>>> Regards
>>>
>>> Adrien
>>>
>>> You can get me off list at:
>>> adriencollins06@ aol.com
<mailto:adriencolli ns06%40aol. com>
> <mailto:adriencolli ns06%40aol. com>
> <mailto:adriencolli ns06%40aol. com>
>>> or
>>> adrien_collins@ yahoo.co. uk
<mailto:adrien_ collins%40yahoo. co.uk>
> <mailto:adrien_ collins%40yahoo. co.uk>
>> <mailto:adrien_ collins%40yahoo. co.uk>
>>> Or
>>> adrien.collins@ orange.fr
<mailto:adrien. collins%40orange .fr>
> <mailto:adrien. collins%40orange .fr>
>> <mailto:adrien. collins%40orange .fr>
>>>
>>> Speakon is a free fully self-voicing accessible
> multimedia
>> program for
>>> the visually impaired, find out more by downloading the
>> software from:
>>> http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm>
> <http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm> >
>>> <http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm>
> <http://www.a- technic.net/ speakon.htm
<http://www.a- technic.net/ speakon.htm> > >
>>> You can join the speakon user group by sending a blank
>> e-mail to:
>>> speakon-subscribe@ yahoogroups. com
<mailto:speakon- subscribe% 40yahoogroups. com>
> <mailto:speakon- subscribe% 40yahoogroups. com>
>>> <mailto:speakon- subscribe% 40yahoogroups. com>
>>>
>>> -----Original Message-----
>>> From: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> <mailto:epilepsy% 40yahoogroups. com>
>>> [mailto:epilepsy@
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> <mailto:epilepsy% 40yahoogroups. com> ]
>>> On Behalf Of Laura Gresham
>>> Sent: 08 June 2009 02:19
>>> To: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> <mailto:epilepsy% 40yahoogroups. com>
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>>
>>>
>>> i will have to ask his speech therapist about that when
>> school starts.
>>> we have gotten to where we can kind of read his body
>> language when he
>>> doesn't talk. it's so sad.
>>>
>>> ____________ _________ _________ __
>>> From: Elizabeth Last NameSilva <elizabethkaron@
yahoo.com
<mailto:elizabethka ron%40yahoo. com>
> <mailto:elizabethka ron%40yahoo. com>
>>> <mailto:elizabethka ron%40yahoo. com>
<mailto:elizabethka
>>> ron%40yahoo. com> >
>>> To: epilepsy@yahoogroup s.com
<mailto:epilepsy% 40yahoogroups. com>
> <mailto:epilepsy% 40yahoogroups. com>
>> <mailto:epilepsy% 40yahoogroups. com>
>>> <mailto:epilepsy% 40yahoogroups. com>
>>> Cc: elizabethkaron@ yahoo.com
<mailto:elizabethka ron%40yahoo. com>
> <mailto:elizabethka ron%40yahoo. com>
>> <mailto:elizabethka ron%40yahoo. com>
>>> <mailto:elizabethka ron%40yahoo. com>
>>> Sent: Sunday, June 7, 2009 6:32:14 PM
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>> between the childhood aphasia (like adult altizmers Im
>> sorry I can't
>>> spell very good this evening) and her anxiety thats what
>> the speech
>>> therapist diagnosed it as. She does get it back its just
>> frustrating
>>> as can be till it happens.
>>>
>>> ____________ _________ _________ __
>>> From: Laura Gresham <greshamlaura@ yahoo.com>
>>> To: epilepsy@yahoogroup s.com
>>> Sent: Sunday, June 7, 2009 5:55:56 PM
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>> I was never told that is what it was. My little Aeidan
>> goes days
>>> without talking also, generally after heavy seizure
>> activity or too
>>> much excitement (i.e. being in the sun).
>>> Laura
>>>
>>> ____________ _________ _________ __
>>> From: Elizabeth Last NameSilva <elizabethkaron@
> yahoo.com>
>>> To: epilepsy@yahoogroup s.com
>>> Cc: elizabethkaron@ yahoo.com
>>> Sent: Sunday, June 7, 2009 4:15:54 PM
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>> My 6 and half year old daughter is unable to talk at
> times
>> after her
>>> seizures.. They said she has childs apasia bout the same
>> thing your
>>> talking about. It takes up to 48 hours to regain her
full
>> functioning
>>> conversations back. But she does get it back.
>>>
>>>
>>>
>>> ____________ _________ _________ __
>>> From: "mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
>>> 40bnin.net>
<mailto:mylmy% 40bnin.net>
> <mailto:mylmy% 40bnin.net>
>> <mailto:mylmy% 40bnin.net> "
>>> <mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
>>> 40bnin.net>
<mailto:mylmy% 40bnin.net>
> <mailto:mylmy% 40bnin.net>
>> <mailto:mylmy% 40bnin.net> >
>>> To: epilepsy@yahoogroup s.com
>>> Sent: Sunday, June 7, 2009 3:36:58 PM
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>> Nancy,
>>>
>>> Yes, my doctor knows this because my daughters call him
> or
>> his stand
>>> in after they have been called. He has never seen me
when
>> I can't
>>> talk. (It usually happened on a weekend and he is not
>> available) to
>>> see me anyway.
>>>
>>> 6 years ago I was admitted to the hospital and had an
> MRI,
>> Ultra
>>> Sound, CScan and an EEG. Then he thought I had a TIA
>> (small stroke)
>>> but everything happened like before. The last time 2
> years
>> ago I asked
>>> him if it was a TIA or a sz. He thought it was a sz. He
>> didn't see me
>>> either time until Monday morning.
>>>
>>> I usually go in Monday morning and he checks me out. By
>> then I am
>>> talking again but he can tell that I am not quite my
> usual
>> self and I
>>> am not to drive. Between my daughter and I
>>> -- we tell him what happened. (At least what little I
>> remember and
>>> whatever anyone else has seen of me). He sends me to get
> a
>> blood test
>>> to see if my meds are low.
>>>
>>> You will have to remember I don't have many szs. My last
>> one was 2
>>> years ago and before that it was 4 years.
>>>
>>> Millie
>>>
>>>> does your dr. understand this.. maybe I should see
>>> another dr but he
>>>> is suppose to be the best. Nancy
>>>>
>>>>
>>>>
>>>>
>>>> ____________ _________ _________ __
>>>> From: "mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
>>>> 40bnin.net>
<mailto:mylmy% 40bnin.net>
> <mailto:mylmy% 40bnin.net>
>> <mailto:mylmy% 40bnin.net> "
>>> <mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
>>> 40bnin.net>
<mailto:mylmy% 40bnin.net>
> <mailto:mylmy% 40bnin.net>
>>>> <mailto:mylmy% 40bnin.net> >
>>>> To: epilepsy@yahoogroup s.com
>>>> Sent: Sunday, June 7, 2009 1:31:34 AM
>>>> Subject: Re: [epilepsy] Re: New Here
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> Nancy ,
>>>>
>>>> When I was diagnosed (DX) 47 years ago I had grand mal
>>> szs.
>>>>
>>>> About 15 years ago they changed to more like complex
>>> partials--
>>>> according to what I read. I start out by acting like I
>>> don't hear you.
>>>> Since I live alone I sleep a lot. Other wise I am
>> probably
>>> sleep
>>>> deprived. I walk to places I don't remember later. If I
>> do
>>> talk my
>>>> friends know I am not my usual self. Then I have
trouble
>>> talking (my
>>>> brain isn't working right.)-- then I can't talk at all.
>>>> This is usually over the course of 2 days. My girls say
>> my
>>> brain is
>>>> scrambled. -- Then like a light switch-- my brain turns
>> on
>>> again.
>>>>
>>>> I have sent out instructions to people in my building
>> that
>>> when I am
>>>> not my acting my normal self -- to call my 2 daughters
>> who
>>> live in town.
>>>> It takes about a week to be my usual self. My last one
>> was
>>> 2 years ago.
>>>>
>>>> Millie
>>>>
>>>>> thanks for the input that I have complex partial
> seizues
>>> or tempole
>>>>> lobe.
>>>>> as my dr really does not know. but I do not pass out.
>>> after I have
>>>>> one I am feeling reallyweird, like everything is
really
>>> far away.
>>>>> even things up close are far away. and most of the
time
>>> it last all
>>>>> day. It affects my eyes as I can not see. sometimes it
>>> is in just
>>>>> my right eye and sometimes in both. He did say the
> right
>>> side of my
>>>>> head is worse, by all thetes he has giving me. Most of
>>> the time I
>>>>> know I amhaving having one but alot of times it just
>>> comes on me and
>>>>> it is crazy. is there anyone else that has these
>> simtoms.
>>>>>
>>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> [Non-text portions of this message have been removed]
>>>>
>>>>
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>> [Non-text portions of this message have been removed]
>>>
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