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
>
> 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
> >>
> >> 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)
> >> > 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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