I'm guessing your name is Anne -- you didn't sign your name,
Welcome to our group,
Have you told your Dr. about your szs that you have? I suggest
you keep a diary of when you take your meds, what you were
doing before you had it, what kind of a sz you have ,how you
felt when it was over and how long it took you to get over it.
You may find a pattern that may help you and your Dr.
Instead of being angry at CURE -- do something productive for
your self. I have had EP for 47 years. At first I had GM szs
but about 15 years ago they changed to something like complex
partials.
I have been on Dilantin and Phenabarb for over 20 years and am
pretty well controlled.
Do you live by yourself? I live in a HUD building on a retirement
campus. We have shuttle, and buses to take us where we want to
go. There are also people here that know how I usually act and can
call my 2 daughters in town when I am not acting my usual self.
Millie
> Dear Craig,
>
> I do believe that something is up and coming. I believe this because
> Obama's Chief of Staff or something like that, he's a pretty higher up
> official, this gentleman has a daughter with epilepsy.
>
> I can't remember if I posted to the group about CURE, which I thought
> was going to be a help. (the higher up's wife founded the group) But, I
> found out through emailing the woman (someone else responded a while
> later) that this CURE was only for children and pretty much their
> mothers. I was outraged. Only children? I was less than a yr old when
> I had my first seizure. They went away and so did the meds after a few
> yrs and returned from 16-18. At 33, they returned with a vengeance.
> Currently, I'm 37, still with 'refractory' seizures. I explained in
> detail how I felt when I cracked my skull or experienced Status and saw
> my parents' cry. At this point, I should be caring for them. To see my
> dad's eyes tear up, when he saw the blood all over my head ~ doesn't
> that count as being a child, having parents who deal with their child w/
> epilepsy. They also informed me that all the super expensive tickets to
> their events would not be lowered or even free to epileptics or their
> caregivers.
>
> It makes no sense. They mention how the research MAY help epileptics
> that are older, but I'm not sold on that. Children are allowed some
> different meds and can't take some others and the same with adults, who
> basically, to my knowledge and experience, can take most.
>
> I certainly don't have an issue with them promoting research for
> children ~ I wish that was the case when I was a child. My poor folks
> dealing with doctors, who by no fault of their own, just didn't have
> training for epilepsy, let alone childhood ep. So, I'm thrilled that
> parents have a resource and champion behind them. But, why not all
> epileptics and their caregivers? They are contributing, IMO, to the
> stigma that so many of us adults endure.
> My friends and family, w/ the exception of my folks and sometimes one
> brother ~ when he's at their house, these people I was so close with,
> have
> quietly removed themselves from my life. I'm homebound ~ no buses or
> taxis or anything here ~ and the isolation makes anything, a dentist
> apptment, haircut, anything ~ dependent on whether my parents can take
> me.
>
> I'm recovering from multiple jarring seizures and two huge GM's (they
> are getting worse) one I fell in the kitchen and one on the concrete
> floor ~ yet the CURE's research might help me. I told them to remove me
> from emails, snail mail, etc. Help all of us. I try to have a positive
> attitude towards ep., I really do, but I feel that if you are a parent
> of a child, join the group. Maybe you could mention the adults and
> caregivers of them ~ if enough people do that,
> Craig, I believe we will have a better quality of life.
>
> And long story longer, I most certainly will contact my senators and
> reps. I think it is so important. I'll mention everything you've said
> and my experiences, as well. (mold, flashing lights ~ yes as an adult ~
> other smells ~ stress, particulary arguments w/ family, where I always
> cave and never voice my opinion, and lack of sleep, I'm sure there are
> others) I'll mention the places I've been, the treatment I've received,
> and how dramatically my life has 'transformed.
> username; I want a good, no great, transformation to take place. So
> far, the new neuro I see, has transformed me. I am still having
> seizures, really horrific ones, but he knows his stuff. Taking me off
> of Felbatol, he did it slowly. Now, he is working on Phenobarb.
>
> I can't wait for my appointment next week!
>
> --- In epilepsy@yahoogroup
>>
>> Rhonda I too seem to be quiet when I would know I am going into a
> Grand Mal seizure. I was thinking in my head in those times that this
> can not be happenning again as I am thinking. What did I eat now ? This
> wasn't to be happenning since I had surgery. Sometimes I can think all
> of that before it happens and sometimes I can't. In saying that, I feel
> I am fighting a battle all alone as I know how David had thought when he
> fought against Goliath. WE ALL need to fight the battle I am fighting as
> some of you know about. For those who do not, I am trying to get the
> congress, FDA and EFA who I really wonder about, to get
> MonoSodiumGlutamate
> everywhere in the U.S.A.
>> MSG I know by experiances I have had, causes me to go into a Grand Mal
> seizure as will nitrates in ham and other pork products. Not all pork
> products affect me but the MSG and all its forms does cause GM's with
> me. I have called my congress woman in WV along with the minority leader
> in the house to get all MSG and its replacement additives out of our
> foods. MSG not only can cause seizures, but it can cause other
> neurological conditions along with other illnesses like asthma, high
> sugar levels can spike up and OBESITY. MSG is the number one cause for
> THAT. Our government reps, along with the FDA, AMA & drug companies have
> been decieving us for over 50 years in telling us our foods are safe. No
> doctor has ever told me or my parents what caused my condition at 5
> months old in the past 48 and a half years. Doing my own investigating I
> come to the conclusion that MSG in 1960 caused and created my condition
> at 5 months old. MSG I know today are in baby foods
>> and all other foods we buy daily that are in the freezer,
> refrigerator, or shelf at your home. Junk foods and candy has MSG in
> them and most people eats those foods on a daily basis. Sugar free
> sodas are bad in that area too and the sweetners used can cause
> seizures. All of this should lead to everyone who has a health problem,
> needs to call congress and do it now. www.house.gov Find your state rep
> and also contact congresswoman Capito from WV and minority leader R John
> Bonnier and tell them to get all MSG and its replacement MSG forms out
> of our foods now. They want to have a healthcare bill forcing us to be
> insured yet our foods are to still make us sick as I can have a GM
> seizure among others who know not why they have seizures. This is not
> about me as the whold medical industry would not be making money from
> MSG as less people would stay home instead of going to their doctor. I
> am proof, if I have NO MSG in my foods, I have no G M seizure to
>> happen. All anyone here can do it dectect things for themselves or
> child they have that has seizures. Other conditions MSG creates among
> seizures has made trillions for the doctors, drug companies, and food
> companies that WE ALL PAY FOR. YES THAT MAKES ME MAD AS OUR GOVERNMENT
> HAVE DESTROYED MORE PEOPLES LIVES, THAN WANTING TO STOP ALL ILLNESSES
> THAT MSG CAUSES.THAT IS INSANE ! Ok I'm relaxed now. Everyone should
> contact DC and the FDA www.fda.gov if they have reactions of any kind
> from MSG seizures or no. Racheal Harrington would be who I suggest you
> speak with as she was kind to me about MSG. Then contact the EFA and
> pray they will act for us. Joe LaMountain is whos ears you need to ache
> and do not be afraid to ask him what EFA is doing about MSG. I am still
> waiting for a reply from 3 weeks ago when I called him about the FDA
> meeting I had with Cynthia Harris out of Martinsburg WV. I beleive we
> all have the power to make these people
>> act for us. One can not do it all. My goal in all of this is to
> prevent innocent infants from being diagnosed with a seizure disorder
> that MSG can cause. It did with me in 1960 and there was less MSG in
> foods then compared to today. Get those phone lines and emails working
> asap. These sites will help you all know more about MSG. These are
> facts not myths as your doctor may tell you there's no truth to it. My
> neuroologist now believes 50% of what is in this information. I'm
> convinced he'll believe it all soon. www.truthinlabeling
> www.sellingsalesman
>>
>>
>>
>>
>> [Non-text portions of this message have been removed]
>>
>
>
>
> [Non-text portions of this message have been removed]
>
>
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