neraymon,
You didn't sign your name so I don't know how to address you.
Triggers for szs can be lots of things for different people.
sometimes it is stress, sometimes, it is bright lights,or TV
or computer, not enough sleep,\, etc.
I suggest you keep an EP diary of when you take your meds,
what you were doing before a sz, what you did during the sz,
and how you felt afterward -- or anything that might give you a
pattern. That will also help your Dr.
As you read our letters you will see that everybody has to find
their own med and that most of us are different. But we are all
learning from each other.
Millie
Millie
> It seems that lately stress has brought some of mine on. I have a very
> stressful job. I get these excruciating Headaches just prior to having
> one that is how I know one is coming on. I just switch to another medical
> provider and my former neurologist just assumed that stress was causing
> it. Does anyone know if there is a test to determine if stress is causing
> my seizures. My doctors have never determined why my seizures are caused
> just that the dilantin controls it. Any ideas would help.
>
> --- In epilepsy@yahoogroup
> wrote:
>>
>> Hi Kevin,
>> My neurologist told me that AEDs, as well as stress, can cause
>> constipation. Try a gentle laxative, like Senekot. If worse comes to
>> worse, take a spoonful of Caster oil before bed every night.... That
>> should clean you up. :)
>>
>> Also try thinking postitive Kevin. It's a cruel world, but we have to
>> learn to live with it. Accept the cards you have been dealt and just
>> play the game. There are mountains in everyone's lives. We have to
>> keep climbing, and end the end it will all pay off.
>>
>> God bless you,
>> Tristin :)
>>
>> --- On Wed, 6/17/09, Kevin <kevluvskats@
>>
>>
>> From: Kevin <kevluvskats@
>> Subject: [epilepsy] Re: Who has had similar experiences?
>> To: epilepsy@yahoogroup
>> Date: Wednesday, June 17, 2009, 3:14 PM
>>
>>
>>
>>
>>
>>
>>
>>
>> The seizures are only Partial Complex, and they are in the Right
>> Temporal Lobe and part of the Frontal lobe. Only have them maybe once
>> every 6-8 weeks, and usually stem from eating too much when they do
>> happen. Constipation is the main cause of the seizures I have at
>> present.
>>
>> --- In epilepsy@yahoogroup s.com, mylmy@ wrote:
>> >
>> > Kevin,
>> >
>> > You have not answered my last questions. What kind of
>> > szs do you have and how often?
>> >
>> > I can't believe that most of your counseling has again
>> > been negative - or at least that is the way you see it.
>> >
>> > You sound like you are just now going to counseling at 53.
>> > Since you have negative tapes in your head -- you are going to
>> > have to change them to positive-- and only you can do that.
>> >
>> > Was there not one person who was positive of all the people
>> > you have counseled with?
>> >
>> > I have a suggestion:
>> >
>> > Every day write down in a notebook 5 things that you are
>> > grateful for.. Maybe the sun was shining - they don't have
>> > to be big -- just something that you are glad about.
>> >
>> > Millie
>> >
>> >
>> >
>> >
>> >
>> >
>> >
>> >
>> > Thank you for writing.
>> > > Counselors have been plenty. Psychiatrists, Psychologists,
>> > > Psycho-Therapists, Social Workers, Guidance Counselors, Ministers,
>> etc...
>> > > Talking never solves a problem and one counselor said, "Your problem
>> is
>> > > like someone who has an addition problem yet yours is 53 years long
>> and
>> > > deep. If you were an alcoholic of 10 years it would be easier to
>> break
>> > > that habit patter or addiction, but breaking a 53 year habit,
>> especially
>> > > since your negative input started at the beginning of your life it
>> will
>> > > take more than 10 years to undo a 53 year problem. Then he said
>> imagine
>> > > your brain as a fishbowl empty at birth, and then as time goes
>> along,
>> > > everthing put into it was negative or depressing. Do you think you
>> could
>> > > find even one thing in there considered good? Then he said imagine
>> being a
>> > > MacIntosh computer programmed only to do certain things with certain
>> > > software. If people try to put Windows programs into you, you will
>> not
>> > > function, you were not programmed to be receptive to any program but
>> the
>> > > one you're programmed for. So nothing would work. Then he said if
>> you
>> > > emptied the fishbowl of all that was in it which was negative, then
>> you
>> > > have one totally empty bowl without even one item or thought in it.
>> NO
>> > > brain is functional without anything in it. Thus it would be like
>> starting
>> > > from birth all over and trying to put into your brain everything
>> thats
>> > > good. That would take an extremely long time. The counselors at
>> Vocational
>> > > Rehabilitation said If we were to train you do work or something.
>> That
>> > > would not be a good idea, mainly because of your age. Most of those
>> we
>> > > train are between 18-30 years old, but a Trainee at 53 would be the
>> very
>> > > last person considered for hire so they suggest not doing it. Then
>> Born
>> > > with Epilepsy which in turn brought upon Depression. Yet aging has
>> also
>> > > added Angina (a heart problem) High blood pressure, visual problems,
>> has
>> > > brought upon a change in appetite. They say my Thyroid isn't
>> producing as
>> > > much of a certain hormone as it should which is why my energy level
>> isn't
>> > > where it should be, so I have medications for that too. Then 325 mgs
>> of
>> > > Aspirin to keep my blood thin enough to not clot. an Allergy pill to
>> stop
>> > > the runny and sneezing nose each morning. And of course as you age
>> your
>> > > body is in the breakdown mode so I can't turn back the hands of
>> time.
>> > >
>> > > Medicine list:
>> > > Keppra 1000 mgs 2 in the morning 2 in the evening
>> > > Trileptal 300 mgs 2 in the morning 2 in the evening
>> > > Celexa 20 mg 1 at bedtime
>> > > Levothyroxine25 mcg 1 each morning 3 hrs before all the other meds
>> > > Aspirin 325 mgs one each morning
>> > > Carvedilol 6.25 mgs 1 in the morning and 1 in the evening
>> > > Lisinopril 5mg 1 in the morning and 1 in the evening
>> > > Nitroquick 0.4 mg tablet take as needed when having Angina attacks
>> > > Fexofenadine 180 mg tablet to take 1 each morning
>> > >
>> > > They are thinking of adding Meclazine which is for Vertigo. I
>> sometimes
>> > > lose my balance after bending over. Seems like aging only increases
>> the
>> > > medicine list for people.
>> > >
>> > > I'm the youngest in the family and Everyone has their share of
>> issues.
>> > > People in the family have Anemia, Angina, High blood pressure,
>> Sciatic
>> > > Nerve, Migraine Headaches, Epilepsy, Asthma, Fibromyalgia, and a few
>> more
>> > > things. Dad died of a massive heart attack, Sister died of
>> Pancreatic
>> > > Cancer, Brothers wife died two months ago from Leukemia, Neice died
>> from
>> > > having a seizure when she was home alone. She twisted into a
>> position on
>> > > the sofa that left her face down and she suffocated. She was 15
>> years old
>> > > when that happened.
>> > > So as we age all we can do is hope that the medicines given can do
>> what
>> > > they are supposed to do. For many it means a change of diet, change
>> of
>> > > occupation or lifestyle, addition of new medicines, and a
>> readjustment to
>> > > life itself
>> > >
>> > > Some of the psychological Confusion is that some Drs tell me I
>> should not
>> > > live alone, because only the witnesses around me can actually
>> identify the
>> > > seizures and they need to know what happens and the details. If
>> alone I
>> > > would not have any clue that I had one. Then others say that I need
>> to
>> > > try to live alone and get a sense of Independence since I've always
>> been
>> > > with family or friends never having gotten a chance to be
>> independant. Who
>> > > is right is where the confusion starts. I do think I need to be in a
>> house
>> > > with another person. Having seizures also has caused me to try to
>> fit in
>> > > with others. In this need to belong to someone or to have a
>> girlfriend,
>> > > mate or something. I read profiles of what people want in a person
>> and so
>> > > often long ago I have tried to become that which they said they
>> wanted,
>> > > but then I seem to present to the public one person at at home alone
>> a
>> > > totally different person exists. I asked Who am I? one person
>> said..."
>> > > When you are by yourself, take note of the things you do, what you
>> eat,
>> > > what music do you choose for yourself to listen to, etc..." Then
>> compare
>> > > that to what you do when you're influenced by those around you. She
>> said
>> > > you are a Chameleon, who changes colors depending upon where you
>> are. She
>> > > said you too often try to be like those you're around because you
>> want to
>> > > be accepted and you fear that no one would like the real you who is
>> not
>> > > considered Hip, cool, or as some say with it. I do not laugh, or
>> cry, and
>> > > to this day I have no clue as to why either emotion never comes out
>> of me.
>> > >
>> > >
>> > > --- In epilepsy@yahoogroup s.com, mylmy@ wrote:
>> > >>
>> > >> Hi Kevin,
>> > >>
>> > >> Welcome to our group.I became very sad as I read your letter.
>> > >> I thought --"What a waste of a human being"
>> > >>
>> > >> Have you had any counseling? I don't know where I would be if
>> > >> I hadn't counseled with different people. I still have some one
>> > >> I can go to where I am -- church, the retirement center where I
>> > >> live, family counseling, etc.
>> > >>
>> > >> You need someone to tell you "You are OK". Try taking an assertive
>> > >> course.
>> > >>
>> > >> What kind of szs do you have? How often? What meds are you on?
>> > >>
>> > >> Millie
>> > >>
>> > >>
>> > >>
>> > >>
>> > >>
>> > >>
>> > >> > My life has sometimes been called Unstable, and it seems like
>> this:
>> > >> > Back in 1956 when I was born with Epilepsy no one knew much about
>> it.
>> > >> So
>> > >> > in school, where most teachers and the board of education were
>> lacking
>> > >> the
>> > >> > knowledge of it this is what happened to me.
>> > >> > Kindergarten PS 37, then shifted to St Catherine of Sienna
>> Catholic
>> > >> > School grade 1-4. The 4th grade teacher was a bit scared and she
>> > >> couldn't
>> > >> > handle it so I was shifted to PS 30 to do grade 5. Then JHS 72
>> was
>> > >> where
>> > >> > grades 6-8 were spent. Bayside HS kept me for grades 9 and 10.
>> > >> Hillcrest
>> > >> > Annex HS where GEDs were given took me at grade 11 and 12. I got
>> my
>> > >> GED.
>> > >> > Then the Vocational Rehabilitation at North Shore University
>> Hospital
>> > >> had
>> > >> > me, and next the Flushing Office of Vocational Rehabilitation.
>> That
>> > >> was
>> > >> > the school or learning life.
>> > >> >
>> > >> > This is the working world:
>> > >> > I applied at 29 Temporary agencies and through the course of 1973
>> to
>> > >> 1986
>> > >> > I had done 96 Temporary jobs which were (Asst Bkkpr, Mail Clerk,
>> File
>> > >> > Clerk, Figure Clerk, Stock Clerk, US Postal mail clerk and
>> midnight,
>> > >> Dept
>> > >> > store Warehouse jobs, cleaning up offices, and an accounting
>> clerk
>> > >> which
>> > >> > to me was the same as the bookkeeping) . My typing speed had
>> reached a
>> > >> > point of 70 wpm at one point, but it could never reach that high
>> > >> again. I
>> > >> > really wasn't cut out for office work. My seizures were coming
>> mostly
>> > >> at
>> > >> > night, and in a weeks time from 3-9 per week. One day in 1986
>> while in
>> > >> the
>> > >> > office doing bookkeeping, for some reason I was at work then
>> awakened
>> > >> in
>> > >> > the Hospital. I asked the nurse what was wrong, she said "You had
>> 4
>> > >> big
>> > >> > seizures at your job back to back." That never happened before.
>> So
>> > >> the Dr
>> > >> > there had suggested "Do not return to work. It was because of the
>> > >> working
>> > >> > too fast and too hard that I went past my stress limit and the
>> Tension
>> > >> and
>> > >> > Stress provoked those big seizures. After that in that year I was
>> put
>> > >> on
>> > >> > Soc Sec Disability, given Medicare and Medicaid, and began to
>> live as
>> > >> if I
>> > >> > were an Elderly person. Waking up and watching others go to
>> school in
>> > >> the
>> > >> > morning. One of the biggest hurts was watching my nephew go from
>> > >> Diapers
>> > >> > to PhD. In all that time I haven't accomplished anything.
>> > >> >
>> > >> > the Medical journey:
>> > >> > These are the Hospitals that were not of much help in NYC.
>> > >> > Jamaica Hospital, Queens General Hospital, Mary Immaculate
>> > >> Hospital,
>> > >> > St Johns Hospital, North Shore University Hospital, Montefiore
>> > >> > Hospital, Columbian Presbyterian Hospital, Long Island Jewish
>> > >> Hospital,
>> > >> > and a few others.
>> > >> > In Atlanta where I stayed for 4 years, Emory University Hospital
>> > >> realized
>> > >> > that two of the medicines I was given by the NY Drs was not
>> right.
>> > >> > Mysoline and Tegretol were not supposed to be taken together
>> because
>> > >> one
>> > >> > cancells out the action of the other. So thats why seizures kept
>> > >> coming.
>> > >> > That Dr replaced Mysolie with Keppra and changed Tegretol to
>> Trileptal
>> > >> and
>> > >> > I noticed a great big decrease of having seizured down to 1 per
>> month.
>> > >> > Then I moved to a disability apt building in Connersville Indiana
>> for
>> > >> 6
>> > >> > months, then went to Omaha Nebraska where miraculously one good
>> > >> > Epileptologist did what all the others never thought about. Dr
>> Sanjay
>> > >> > Singh University of Nebraska Medical Centers Epiletologist, had
>> > >> nurses,
>> > >> > himself and a Video EEG monitoring done. He then had an MRI, EKG,
>> EEG,
>> > >> and
>> > >> > Cat scan done. and had me off my meds for 3 days while in the
>> hospital
>> > >> so
>> > >> > that he could see face to face with the nurses and the video as a
>> > >> witness
>> > >> > exactly what was happening, where the seizures started and where
>> they
>> > >> > spread. He said the diagnosis of the NY Drs was not accurate.
>> They
>> > >> have
>> > >> > always told me I had Right Temporal Lobe seizures. Dr Singh found
>> out
>> > >> > thats where they start but they spread to the Frontal Lobe as
>> well. He
>> > >> > increased my Keppra from 500mg per tablet to 1000 mgs per tablet
>> two
>> > >> in
>> > >> > the morn and two in the evening along with 300 mg of Trileptal 2
>> in
>> > >> the
>> > >> > morn and 2 in the evening. Seizures have decreased to 1 per 6-8
>> weeks
>> > >> now.
>> > >> > So glad I met him. I moved to Hawaii and had a roommate who has
>> > >> > Fibromyalgia, Diabetes, Broken ankles, Depression, and Chronic
>> pain
>> > >> and
>> > >> > chronic Fatigue syndrome. Stayed with her 3 years total, now I'm
>> back
>> > >> in
>> > >> > NYC with my family.
>> > >> >
>> > >> > When I was younger My Drs and family had said to me, and this is
>> where
>> > >> my
>> > >> > biggest problems are, not so much from the epilepsy but from how
>> I was
>> > >> > treated growing up because of them. the Psychological Damage is
>> deeply
>> > >> > serious. What do you think you'd do and how would you feel if for
>> more
>> > >> > than 40 years you were told
>> > >> > 1 you have a learning problme
>> > >> > 2 you shouldn't and don't drive
>> > >> > 3 you shouldn't go to college its much too stressful and that
>> would
>> > >> truly
>> > >> > trigger plenty seizures
>> > >> > 4 you are not marriage material, no woman would want to marry a
>> > >> > handicapped man.
>> > >> > 5 having epilepsy means your demon possessed. One scripture says
>> Jesus
>> > >> > heals a demon possessed boy, in another translation it says Jesus
>> > >> heals a
>> > >> > boy with seizures, and in another translation it says
>> > >> > Jesus heals an Epileptic (thats how people see epilepsy as demon
>> > >> > possessed.
>> > >> > Upon growing up hearing all these negative things, did go through
>> > >> > extrememe Depressive bouts and had to have Elavil, Triavil,
>> > >> Haldol,Valium
>> > >> > and Celexa to deal with those. I got to the point where in 1988 I
>> was
>> > >> > just convinced that life for me was just going to be different. I
>> have
>> > >> 5
>> > >> > older brothers and sisters who just went through school like
>> normal,
>> > >> went
>> > >> > to college graduated got married and have children. It hurts like
>> > >> crazy
>> > >> > to even be around the family knowing that I just don't have the
>> same
>> > >> > options available, my life won't be the same and can't be the
>> same. I
>> > >> > have come to accept, I'm different, and it makes no sense to
>> dream of
>> > >> > wish or hope of anything because I just so different, I'm not
>> normal,
>> > >> and
>> > >> > it is truly hard when it comes to relationships because most
>> women do,
>> > >> > want a man who works, can drive, and has an income other than
>> just a
>> > >> > small disability check. I have been on more than 70 Dating sites
>> to
>> > >> no
>> > >> > avail. Recently though, another handicapped woman in TX who wants
>> a
>> > >> > companion and not a husband is willing to accept me and have me
>> move
>> > >> in
>> > >> > with her. She needs someone with her just as I do.
>> > >> >
>> > >> > In many Epilepsy Support Groups they talk about Education, Work,
>> > >> > Treatment, etc... yet most of my problems are based on the
>> > >> Psychological
>> > >> > Damage done by the way I was treated growing up. This may seem
>> unusual
>> > >> but
>> > >> > never have I had a male friend in my life. Why? They were the
>> ones
>> > >> that
>> > >> > teased, mocked, didn't want to be near me or didn't want to play
>> with
>> > >> me
>> > >> > so I made up my mind long ago that I will be a pet person, and no
>> > >> boys,
>> > >> > men, or males were going to be a part of my life at all. Never.
>> So
>> > >> just
>> > >> > Cats, and other depressed and handicapped girls or women. I also
>> got
>> > >> used
>> > >> > to doing things that didn't require a second person. Reading,
>> Drawing,
>> > >> > gardening, and being creative. I grew up to be a Loner,
>> Reclusive,
>> > >> > Nonchalant, Content, calm, collected, not a group person at all.
>> I
>> > >> didn't
>> > >> > want to be with my family on Holidays at all. Spent most holidays
>> in
>> > >> my
>> > >> > room. Even at the age of 53 presently, while I'm glad the
>> seizures
>> > >> have
>> > >> > almost gone away, my problems stem from not knowing what to do
>> with my
>> > >> > life at present. I have no Goals, Dreams to pursue or anything.
>> At 52
>> > >> > being so close to what soon would be elderly or senior citizen
>> what is
>> > >> > there left for me to do?
>> > >> >
>> > >> > Has anyone had a similar experience? Please tell me and if you
>> want
>> > >> Call
>> > >> > me and we can speak about it.
>> > >> > (718) 978-1455 > Kevin Knight
>> > >> >
>> > >> >
>> > >>
>> > >
>> > >
>> > >
>> >
>>
>>
>>
>>
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>> [Non-text portions of this message have been removed]
>>
>
>
>
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