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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