 bykerb... New - my struggleCreated by bykerb...at8/26/08 - 12:47 pm|3 Comments
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bykerb... New - my struggleCreated by bykerb...at8/26/08 - 12:46 pm
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 JayBri... Going Crazy?Created by JayBri...at5/21/08 - 10:54 pm|12 Comments
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dan2work Every one needs to know thisCreated by dan2workat5/15/08 - 1:11 pm
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 mommy2... How have you accepted the seesaw as reality?Created by mommy2...at4/29/08 - 7:58 pm|4 Comments
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Amaterasu New - Seizures while sleeping? How can I tell if Im having them?Created by Amaterasuat4/24/08 - 11:30 am|19 Comments
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 Black.... Epilepsy triggers?Created by Black....at3/18/08 - 11:11 am|29 Comments
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 katfaerie greetings and salutationsCreated by katfaerieat3/18/08 - 6:59 am|1 Comment
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Black.... Is this Epilepsy?Created by Black....at3/17/08 - 11:54 am|5 Comments
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katfaerie New - epilesy and depression and tinitisCreated by katfaerieat3/6/08 - 8:51 am|12 Comments
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dudett... epilepsyCreated by dudett...at3/3/08 - 6:41 am|2 Comments
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lemon-oh Seizures?Created by lemon-ohat1/30/08 - 8:13 am
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Sasa Coffee and Anti-convulsantsCreated by Sasaat11/27/07 - 6:24 pm|8 Comments
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 suebear Question for VNS patients: Should I be concerned?Created by suebearat10/27/07 - 1:16 pm|1 Comment
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 Sashka my brother needs help, possibly simple partial seizuresCreated by Sashkaat6/2/07 - 4:40 pm|2 Comments
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mojo_jojo New - My sisterCreated by mojo_jojoat9/17/08 - 12:50 am
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M_Johnson New - Girlfriend suffers from epilepsyCreated by M_Johnsonat9/16/08 - 8:13 am|1 Comment
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whatup261 New - Scared to Quit SmokingCreated by whatup261at9/13/08 - 4:13 pm|1 Comment
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bristo... New - dose anyone take tegretol tablets?Created by bristo...at9/8/08 - 5:29 pm|5 Comments
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bristo... New - dose anyone take tegretol tablets?Created by bristo...at9/8/08 - 5:18 pm|1 Comment
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 reba New - question about simple partial seizuresCreated by rebaat8/30/08 - 9:13 am|3 Comments
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 aura14 New - paxilCreated by aura14at8/26/08 - 6:02 pm|1 Comment
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Jewell New - wanting to be a better personCreated by Jewellat8/25/08 - 11:45 am|1 Comment
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Recent Comments on this Discussion
I've mentioned this before, but when I was first diagnosed in the early 60's. Epilepsy was something very few DR's knew anything about, so it was treated as "un-natural".
I spent 5 years in a State Hospital in Traverse City. Michigan. What went on behind closed doors back then, was not treatment. I'm thankful that they're all closed down now.
I was on my own at 17 and by 1988 I had adjusted my own medication and have been seizure free for 22 years.
Last year I was able to face to past. Heres a forum and video with memories of what myself and other patients went through there.
You might want to see the video first...
Forum
http://www.kirkbridebuildings.com/forum/viewtopic.php?f=38&t=1407&st=0&sk=t&sd=a
Video
http://www.youtube.com/watch?v=YjkkS2PYO7c
Mike
ROXANNE
1nevermore,
Sorry if I repeat some things already mentioned. I would get down about my seizures, then I would see someone worse off then me. They would be riding in a wheelchair, ubable to talk, or blind. I have complex petit mals where I stare, drool, shake my hand for about 30 secs. Some months they would occur around 11-15 times a month. People would seem like in thier faces they would sorry, I had to prove them wrong. The only thing that would get to me was waiting for a ride. I was pregnant twice while on my meds that could cause deformaties, but prayers were answered. They both are fine. I had surgery that didn't work. Then tried meds for years. It's hard, this hepls you find out who your true friends are. I never wanted to talk to family. I finally found the right meds for five years until insurance changed to generic. Now want to fight, and show them what we go through and teach them how important our meds are. My generic caused me to have a wreck and now my daughter had to have two surgeries on her ankle because I wrecked. This made me wnat to fight more. Maybe instead of getting down you need to get involved. Because of all this I can take brand name, because I fought. Get busy and write Congressman, volunteer with your EPILEPSY FOUNDATION, do something to get out of depression. That is what I had to do.
Roxanne
Oh great, now I'm finding out I have high blood pressure and will probably wind up on meds for that too.
For those of you who have mentioned welcoming death, SUDEP, or possibily considering suicide. I would strongly recommend that you seek some professional help. It is available if you take a tiny bit of effort looking for it and if you mention your thoughts about wanting to meet the 'Green Ripper' they will be tripping all over themselves trying to help you. The same goes for those of you who are suffering serious depressive problems. To both groups I would suggest that you speak to your doctors immediately as certain epilepsy medications have side effects that could be causing your problems and a switch in dosage or the med itself could clear up your problems immediately. Don't just sit by idly and say "Woe is me.".
For the rest of you who don't really have these problems, my response is; PUHLEEZE!!
Whine all you want, but it won't change the fact that you have epilepsy. Look around you. There are lots of people who have much worse problems than you do.
My cousin has throat cancer and and a beautiful wife and daughters to worry about. Epilepsy? He'd trade with me in a second if that were a choice, but it's not. Both of us keep our heads up and deal with our personal problems as best as we can. I can't drive (and nor would I want to). So I've resigned myself to living in a city with decent public transportation. I'm sure there are other cities that would be prettier to live in, but it would be kind of stupid for me to do so if I was limited to the couple of miles walking distance from my home. If I get the dough, maybe I can visit those places and deal with the cost of cab fares during my visit. In the meantime, you can ask me how to get anywhere in the city on the bus and I am a volume of transit information. My cousin had to fight with the FAA for the longest time because he wanted to get a pilot's license. He was successful. He has things he wants to do and works to get them done within his limitations as well.
Either of us could cry in our soup and hope people feel sorry for us, or we can pull up our suspenders and hope for the best.
Think about the guy you see every day on the street in the chair, would he rather be up off his wheels and striding briskly beside you? Sure, but he's stuck with what life handed him as well. Complaining about having epilepsy is akin to complaining about being allergic to milk or ragweed. Complain all you want, but it isn't going to change things. I'm still going to get the sniffles and sneezes every fall for the rest of my life, and if I were stupid enough to drink a glass of milk I would pay for it dearly with a sentence of several days in isolation in a very small room where the furniture is made out of porcelain.
Matt
You know, when I first read this, I was very upset. So I took a while to respond because I assumed you meant the very best when you wrote it.
However, let us remember that we all need to vent at times. To have a pity party for ourselves, and if you deny you ever do it you're lying. It may not be blatant, it may not even be in front of anyone, but silently to yourself at moments of lowness. So if someone is not handling their condition as well as you lay off. Let them have a place to find someone that relates. Let them learn to handle it.
Epilepsy sucks. Is it the worst thing that can possibly happen in anyone's life??? No. But that doesn't mean it is easy to handle. My teenager is emberassed at times of me because I can't walk right or I'm jerky. The doctors have informed me that my intractable epilepsy will continue to progressively get worse. I was injured in an accident and I have seizures in random areas of my brain, it is not confined to one area. I often go into status epilepticus. I have neuropothy because my cervical vertebrae are cutting off my spinal cord and nerves... I can go on.... There are days that you really wouldn't want to talk to me, because I'm a blubbering idiot! lol.. But most days I pull it together because I have to. It could be worse. I have children. I have to push on. My family doesn't understand, they think I just need to find a "hobby". The doctors won't let me work. I've been fighting for disability and I fought my previous employer before that for unlawfully firing me. I hate having to fight every day. I want peace. But if I want to get up and function tomorrow I know I will have to fight the seizures and shakes and pain to do it.
I read in an email once that if we all added our problems into a pot to pick out of, after seeing everyone else's, we'd grab ours back out quickly. I liked that. Even if I didn't quote it exactly right. lol..
My attitude sucks at times. Othertimes I'm the total optimist. The list of "I can'ts" can be long. But what we have to remember is that we don't all handle it the same. I'm so happy that you can have a pollyanna attitude Matt, but please be patient with the rest. I do so mean this respectfully. Not as an insult just as a reminder.
For those of you not wanting to go on.... Been there. Fight it. You can do it. Talk to someone. Pray.. Something that will give you peace. the sun will come up tomorrow and life will go on. Don't give up. You can't let it win. It's a condition, not you. You are still special, no matter what anyone else says or does. Develope safety nets so that when you are at your lowest you can call someone and distract yourself. And if all else fails take it five minutes at a time, one minute at a time, if you have to. Just get through that one minute...or five minutes...
Matt -- A gold crown should be placed on your head right now! I truly appreciated reading your observations and suggestions having to do with not letting epilepsy getting the hold of one. And I'm one of the 55-million 'round this world who have it. I think being a part of New York City has helped me carry a "show must go on" attitude, even with a monthly seizure I can count on. Loving life, its challenges, even seeing the wide range of experiences to be had have come to be through my own epilepsy. Sure, it took time after hearing a doctor say, almost casually, "My friend, you've got epilepsy and you're most likely gonna have it the rest of your life." That was almost 40 years ago. There have been social and career walls to climb, not to mention the sky-high price of anti-seizure medications. But I continue to love the time I've been given. No, hearing that one has epilepsy shouldn't keep one's doors closed. Ideally, it'll inspire one to prove strong against what chance has put in his or her path.
Hi Matt,
Phenytoin (Dilantin) gave me osteoporois in less than 3 years at age 56. I slowly went off the Dilantin, while slowly relying on Keppra. I've been off the Dilantin long enough that my bones are somewhat regrowing, and the joint pain started to ease up almost immediately. I'm telling you this because the medical clinic here quickly loses good doctors (they go elsewhere soon). Just locally, I've had 4 different doctors in less than 3 years. My second doctor put me on Boniva after a bone scan revealed the effects of the AED, my third doctor told me there was no bone scan and stopped the Boniva. I stopped the third doctor to save my bones (which means no doctor at all for about a year), until a fourth doctor became the replacement in the endless chain of medical care under Medicaid that follows "The Peter Principle" for healthcare with doctors. Everyone should just go somewhere else!!??
Your notion of "professional help" seems to reveal the Catch-22 loophole that you appear to regard as a benefit. Having "professional help" available (bumpkins or worse?) that are triggered, with any tiny bit of "effort" (official complaint form?), into a rampage of "tripping all over themselves trying to help you" is not help, it is a threat of discouraging hindrance.
The whining about whiners not accepting their epilepsy sounds like pity-pot perfect philosophy in practice. Here, the transit information is out of print, of course Dr. Pangloss will tell you that you can go anywhere you want to to find bus service, if you just find the means to find the means to find the means to find........
Demanding basic Human Rights in any forum shouldn't be catergorized as "cry in our soup" complaining, even if self-righetous toxic do-gooders love such self-frustrating catergorizations for the individual voicing their concerns of rights.
When I requested not to be obligated to drink my milk in elementary school because of my allergies, my request was listed as an insubordinate complaint from someone who didn't know what was good for themselves, with corporal punishment administered by all the helpful professionals. I guess we all have to pay our stupid sentence for having such great professional help in every corner, nook, and cranny of society, except where it's needed and rightful.
Tadzio
Dear Tadzio,
It took me a bit to decide how to respond to your letter.
I am sorry for the difficulties you have had with your meds, medical care, and the 'joys' you have had with Medicaid. But reading this as well as some of your other posts gives me the impression that you have a negative attitude about your problems which is also negatively affecting how you have been dealing with it.
I hate to tell you, but I am one of those people who have those really big fun grand mals. So I'm not just a piker spewing platitudes. I have dealt with a lot of the problems that many others here have dealt with, including some of the ones you have described as yours. I could blame the world or I can face them head on. I choose the latter.
Name calling does not make for a cogent argument. Nor does suggesting that people can't get the help they need in this country of ours. Platitudes aren't much help either.
In answer to your question: Yes, maybe some of us should go 'somewhere else'. Tough to face maybe, but realistic. I would love to live on the side of the lake in rural Wisconsin where I grew up, with the Kikkoman soy sauce plant a couple of miles in one direction and the Andies Candies factory a couple of miles in the opposite direction, and surrounded by lots of trees and farms and squirrels and fireflies, but that's just not an option. I need to live somewhere where I'm not required to drive, and the social and medical services are up to speed to deal with my problem. This has an added advantage of living where people seem to be a little more educated about this condition and are less likely to 'freak out' about it, or find it a reason for predjudice.
It' unfortunate that all areas of the country don't have the top notch services that some of us need, but the best we can do is to press politically for that to happen. In the meantime we have to deal with the present and what is.
Feel sorry for yourself if you wish, but that will only cloud your vision of your potential future.
Matt Shelley
Dear Matt,
It's now clear that you were talking about situations outside of your social sphere with your remarks about medical professionals tripping all over themselves with all those people you ascribe a "Woe is me" philosophy in dealing with severe impairments that limit major life activities without entitled reasonable accommodations. From your ascriptions that you now have also asigned to me, it is clear you regard me as a member of the group you chose to catergorize as such, while you now assign additional regarded impairments to me.
My failure is unfortunate for not recognizing your high standards in social standings, education levels, and intelligence levels that preclude any perceived prejudices in your chosen community in dealing with your condition with adequate facilities up to speed, with their location as an additional decisive factor in your capitalized free-will choice.
The political realm was patriotic enough with my transportation concerns to correct my negative view about driving being a requirement in this land of opportunity. In fact, they explained that driving is not a requirement anywhere in the USA, and that it is a privilege that each individual is responsible for making the choice or whether or not to actualize such priviledge, and that I should look at the absence of my motivation to obtain a driver's license as an opportunity to voluntarily get a required photo ID card from the State, which is now also a requirement to voluntarily vote in any election. I prefer to look upon such restricted viewpoints as lacking practicality in living with accommodations in reality, and since I don't wish to run from responsibility, I label such viewpoints as Catch-22 nonsense that may or may not be successfully challenged under our country's great legal systems.
Also, I received the gracious incorrect correction that nowhere in the USA is medical care considered a Constitutonal Right, and that the charities of medical services can choose any restictions that they freely so choose to apply to citizens responsible for squandering their opportunities prior to the onset of impairments inflicted by free-choice lifestyles. I believe the Federal Courts have already issued court orders to the State amending such restricted interpretations of entitlements, but the Federal Troops have yet to arrive to put the body of enforcement into realistic action. Again, I chose to stand my Constitutional ground with my rights to entitlements, and not to scanter away under a faulty guise of self-determination and right-to-work at nothing propaganda philosophies that provide such costly but convenient shelter for lackadaisicals so willing for opiates.
Thank you for reminding me that I have to live with what I can't rise above, while illustrating the hazards of stooping below lesser barriers.
Tadzio
Second that! Well said, Matt.
Cheers,
Andrew
Well said Matt....
Very well said Matt......
I did not think this would happen to me again. i was seizure free for 9 almost 10 years and also off medication.
February of this year life changed again, my seizures started again.
this time i feel so lost since it is nothing like before. i do not drive now, also asking for rides. my parents drive 4 hrs to visit and stay with me, since they want to make sure i am not alone.,
i do have a very supported husband. my neurologist has taken me off work since august of this year, since i started having memory problems ( can not work as a nurse with that type of problem)
dealing with medication changes, therapy.
every night i have noticed that i feel like screaming, wanting to cry, shaky. THIS IS NOT ME.
I AM STARTING TO HAVE FEAR NOW.
WILL SEE HOW NEW MEDS WILL DO FOR NEXT 3 MONTHS.
I DO NOT KNOW WHAT TO THINK ANYMORE.
I AM A 46 YRS FEMALE AND MY PARENTS ARE IN THERE 60'S, WHO WOULD THINK THAT THEY WOULD BE DRIVING ME AROUND.
DONT KNOW WHAT TO DO ANYMORE
THANKS
teachergreen
I understand perfectly how you feel. I just got told today I shouldn't be teaching by my neurologist. I will be going on permanent disabilty. If I find another type of job, WHAT? It's probably better for security sake to take the disability. What a slap in the face but it's the right thing to do. It hurts so much all the hard work I've put into my career. I love teaching.
I will be so bored. I'm not the stay at home, decorate the house typeof person.
I am 47, female and have seizures for 16 yrs. I guess I'm just blessed to be alive. I think I my try to meet other epileptics in my city. Maybe we can play tennis, the guitar. There must be some support groups out there.
Maybe we should listen to our bodies my teacher friend told me. Could I help at senior homes or will they not trust my epilepsy?
I take the dial-a-ride bus sometimes one way to the store and then walk home. I'm sure it is uneasy for my husband when I do this. I don't do it often.
Other people don't mind giving us rides. I hate to ask but it's the safest way.
The intensity level on the vns could not be increased. Vimpat is my new med. I already take dilantin and lamontrigine(lamictal). We'll just see how the new med. works.
Wow, almost seizure free for 10 yrs. This is amazing! It stinks that seizures had to come back.
Told my mom today this no work news and she sounded compassionate. My parents don't live close and my sister has never cared about my condition. I told my mom I'm lucky to be alive.
My life's not over yet, I just need to plan what to do with and hope for the best. I pray everyday.
Don't give up!
Hey weeta,
I don't think it's unusual to have a seizure after stopping meds. I tried the same thing and my doctor warned me ahead of time that in most cases a seizure will come back. And, she was right, about 2 years after I had a tonic clonic just an hour after I went to bed. It's surprising to see 10 years without one. Wow!
I keep reading about non-supportive husbands. What the F@#$ is going on here MEN??!!! Weeta, Seriously, it's NOT your fault, it's not your fault, it's not your fault, IT IS NOT YOUR FAULT. NEVER stop reminding yourself of that.
What medication are you taking? Memory problems, and some other stuff you're reporting can be temporary but they can also be a sign of overdosage. If you haven't reported these new emotions and stuff to your neuro I would do that today, no delay. He can get a blood draw to see what your drug levels are. I take Lamictal, not sure what you take.
I can understand the embarrassment of having to get rides but you're not alone. My old friend had MS and couldn't walk anymore without a walk. He was in his early 40's. I hope you can understand you're not alone and there's nothing that you need to be embarrassed about.
Cheers,
Andrew
You know, I'd probably hug the Grim Reaper like a lost brother right now.
Hi dm_creger,
My life-time temporal lobe epilepsy, with now secondary tonic-clonics partly controlled by Keppra, gave me such a Geschwind Syndrome between language and inter-ictal phenomena, that the Grim Reaper ran away from me and my studies with The Devils' Notebooks of Dostoevsky soon as I opened my epileptic academic mouth, just like employers ran.
Tadzio
Here's the real deal, people... Sugar-coat it all you want to, Epilepsy is a hard-core burden to bear. There's no positive outlook for anything.
When I had my first seizure in 33 years, I thought that I was lucky to have a job that I could telecommute to. Now, I have a new supervisor who considers it a 'luxury' for me to be able to work from home. I've been passed over for promotion, denied formal training and am expected to support equipment I've never worked with, much less seen. Not to mention that, in the last two months, he's fired two other workers that were telecommuting. There's only two of us left, and they've hired four more at the office - you do the math
I'm not able to keep up due to the fact that I have to 'learn on the fly' and have been denied access to or have had to learn by word of mouth, information about new software and hardware. All that's left is for them to determine is that I'm not proficient and lay me off.
He won't honor the previous policy, agreed upon my by last supervisor, to allow me to work extra so I don't use up vacation days when I have a doctor's appointment. Nope, I can have 40 hours in for the week and he'll whack vacation /sick / personal hours in a heartbeat, without me asking.
I'm just waiting for the axe to fall.
Where is that going to leave me? Considering that I live in the employment armpit of my state, and I own a home away from any public transportation or population center that I could possibly be able to walk to, nowhere.
I'm facing not just losing my job, I'm going to lose my house. Being unemployed is going to put a strain on my marriage, too. If there's one thing that will split a couple up - no matter how strong the relationship is - it's money, or the lack thereof.
With Epilepsy, my life is simply done for. No one is going to offer me employment if I tell them I have Epilepsy. If I do get a job and have a seizure on the job and answered 'No' to the question "Do you have any medical issues that would prevent you performing your duties?" (or something similar), they can dismiss me without any repercussions. How can they get away with that? Because I lied about Epilepsy to get the job.
I went from:
being a successful 46 year old, independent southern male, a veteran who had earned Expert in every driving badge the military had to offer, living in NASCAR country, getting ready to buy a sportsman car
to a
46 year old, dependent veteran who couldn't drive himself across the road for a pack of smokes, having to bum rides to doctor appointments because my neurologist is 2 counties over, facing unemployment because he's failing at his job.
Like I told my wife the other night, "Right now, I'm worth more dead than alive." (I have a $200,000 life insurance policy through the VA).
Don't you dare tell me "At least you have your health - it could be worse." I'd rather have a disease that everyone knew could kill me than this affliction that no one understands and might not kill me.
Maybe a bus will hit me or something.
Wait, didn't I just say there's no public transportation where I live?
See what I mean? insert <sarcasm> Life just ain't fair...
To you Dm-creger you have already done things i wish i could have i am young still only 27 years male and from the age of 13 -18 trained by my father the joys of sniping he is an ex-army sniper i was trained to be special forces for 5 years. I also took a lot of martial arts and atained a red belt in three different forms, only red due to black requires registration in every state you go to for your hands and feet as deadly weapons. I have delt with epilepsy for 12 years now. I spent 3 years rebuilding a classic 1969 camaro to be my first car and had my first seizure 3 days prior to my 15th B-day. Most kids are getting learners permits on that day i spent in the hospital. I hate the seizures yet live each day to the fullest, I had to face the hard truth of my "CONDITION" at the age of 15 and that i could go into a seizure at any time and not come out, I wish I could've gone military but the rules state seizure free for 5 years prior to enlistment. I have a wife who is 36 and has stood by me for the last 3 years through more seizures than I care to remember. Public transit is very limited here in the town I am in yet I work day in and day out 40+ hrs a week.
I suggest you find a support group/psychiatrist to help you, just remember you have acomplished things in your life that I have only dreamed of and I tip my hat to your service as I do all veterans and active soldiers who do and have done that what I couldn't do but wanted to.
You have done things I will never have the chance to and due to federal law which i have sued several companies for not obeying you do not have to disclose your medical info to due to HIPPA and also you can't be denied a postion due to a disability. I salute you sir but at the same time wish you would look at the good things you have done, and have yet to do, for it is possible to live a good life with seizures. It aint easy to deal with but life is hard, Semper Fi my friend.
I don't know, maybe it's because I don't understand your point of view. I can drive, I have a job that isn't on the brink of "axes falling down". I don't see 'red lights' telling me to stop. I see green lights telling me to go.
One of the best things you can do in America is work for yourself. You can find work at home that can earn money. If your wife doesn't understand that you're doing the best you can, well, I won't go there.
I can't make you want to live, but look at this veteren below. He's legless, and he finishes a marathon. Do you think he drives?? Do you think he works in a formal role at work? Sure, he probably lives in a less rural place than you appear to, but those are sacrifices that have to be made to adjust. I pity your situation, but I don't pity your attitude. But, then again, I'm not in your shoes. I'm sorry that you see things so bleak. :(
Cheers,
Andrew
Hi apmast,
With driving being the most frequent and first "privilege" to be removed in even minor lapses of consiousness, your not seeing any 'red lights,' and only see 'green lights,' makes it sound very dangerous with any intersections somebody else might be crossing while you're making your own perceived headway. Many major life activities with epilepsy require a higher degree of caution than average, not less.
Tadzio
Tadzio,
Sorry, I wasn't clear enough. It was metaphor, as in "red lights" meaning that a person sees obstacles and they just stop and give up. And, "green lights" meaning that a person sees obstacles and they don't care because they see them as opportunities.
Cheers,
Andrew
Hi apmast,
Stacked metaphors often result in sweet gobbledygook that only makes sense to true believers of Dr. Pangloss. I like to think that I disagree with the latest A.C.T. fad, because premature acceptance of oppression more quickly leads to defeat, but a blind denial of any limits as result of a potent elixir that has poisonous side-effects, might even be worse.
Tadzio
Again, I have no clue what you're saying! I don't think you realize how much I'd like to understand. I wouldn't keep replying if I didn't want to understand your point.
Cheers,
Andrew
Hi Andrew,
I responded to your other posting below. Everything starts to get lost in very long forums here.
I would probably get into more trouble if I tried any marathon. I use a gps unit to keep my legs in sync/count (it works somewhat somehow), and to keep my sense of location and direction while walking. With slight partial paraylisis on my right side now, and a next to total loss of ability to form new mental maps of location and direction, I recovered from my frontal subdural hematoma that ER gave me the moniker of 3Hours2Live without emergency neurosurgery about 39 months ago. Left versus Right is somewhat of a problem too, since epilepsy had shown a preference in affecting my left side.
I stopped driving about 22 years ago, with a perfect driving record. I used the bites on my tongue as indication of degree of danger to my driving, since reported amnesia is frequent for more moderate to severe partial complex seizures. Secondary tonic-clonics became very frequent about a decade later, with a severe one giving me the head injuries with the hematoma. A major paradox is, while some are divinely ecstatic, my partial complex seizures are usually very unpleasant, and a secondary tonic-clonic is a major relief from clusters of them, though physical recovery afterwards is a pain. Simple partial seizures gave me visceral sensations and a wide range of verbal behaviour impairments, from speaking-in-tongues to mutism, etc. all my life. Being kissed by the gods was a major benefit in the University, but not so great in informal job interviews. My Tadzio/Puck effect was lucrative for a while, but the flip side was like an epileptic version of the movie "My Own Private Idaho."
Tadzio
I have a 17 year old son with autism and epilepsy. It is hard but you can't give up. Did you see the 60 minutes where the mom had epilepsy? She could not hold a job, drive etc and they performed a surgery to put a device in her brain to stop the seizures. It worked for her. I don't think you should ever give up hope. Change your meds or your doctor. We are on our third medand third doctor. Still having seizures. Less frequent but still happening. I think there is more awareness and at some point the techonology will catch up with the problems.
I hate my life too. I used to work, be important, be independent. I was diagnosed 9 years ago and it's been all down hill from there. I had a grand mal so bad that I hit my head and neck and caused a blood clot. It took my doc at the time 5 days to admit me to the hospital even though I called and told them I thought it was bad because I had blood running down my face. By the time I was admitted, the blood clot went to my lungs and I almost died. My chances of having another child are gone because of all of my meds, I can't drive, I can't work, I can't even volunteer at my son's school because I have no way to get there. I feel like my life is wasting away. I totally depend on my husband and I HATE IT!! I feel like I'm in a fog all day from my meds and now I am fat to boot. I have had days where I wanted to end it all feeling like my husband and son would be better off without me. I feel like a burden. Then my doctor's just give me a new anti-depressent. Some days I am at the end of my rope. I want to know when things get better. When do I get control of this disease. Or am I just waiting for the big seizure to kill me. When does it get better???
I hate my life and for what Epilepsy has done to it, SUDEP can't come quick enough for me. I guess I'm not going to be around here much longer, in a few weeks I'm looking at being homeless. I'm sorry if this hurts anyone here, but I'm not going to lie about my feelings.
Hey, I'm not judging, ok? But depression is often a side effect of medications for epilepsy. YOU NEED to see someone. There are free services out there. YOU have no idea if this is depression talking or not and we all die eventually, so there's no use in speeding up the process or hoping for a sooner death. Think of the millions upon millions of humans that are never conceived and never have the chance at life. If I had to choose between life with epilepsy and no life at all, I'd choose life with epilepsy. Just heed my words and CONSIDER that you really don't (in your heart of hearts) want an early death. CONSIDER that you're possibly depressed, frustrated, etc. Think about people dying right now of cancer, painful and slow death and they have no choice like you to life or die. Remember, we all die. You're not alone here, over 3 million people have epilepsy, more than Parkinson's, multiple sclerosis and cerebral palsy combined!!!! YOU ARE NOT ALONE.
Cheers,
Andrew
Dear Apmast,
I'm not sure how long you've had epilepsy, the last time you had a seizure, or any of that but I've had it for a long time, been on wayy to many medications, almost didn't graduate, been affected in every way possible by it, and I have to have my mom take me to school everyday. I'm 21 and it's my third year in college.I can't get a job because I know my mom will have to take me all the time, I can't buy my own place because I don't have the money because I don't have a job. Which raises the question, will I EVER be able to grow up? I was engaged to a soldier for awhile and we were talking one night about how what if he was deployed, and we were married and had kids.what if the kids had to go to the hospital or I needed to go to the store?I had an answer for both but I knew what he was getting at.When it comes to epilepsy there's NEVER a sense of independence. I was more independent when I was 13, before I got it, than now while I'm 21.you're right when you say epilepsy meds can have depression as a side effect but i promise you, after reading this post it's not his meds that he's depressed from.
Ashley
Thanks for replying. I'm really hoping that people just keep a positive outlook. It's not always easy and we all have varying degrees of control with our seizures. The depression can come from different sources and I felt it was good on my part to at least mention that the meds could be acting on him in that manner. I had my first seizure at 23. And I have never had one on medication, so I'm more stable than some others here. I guess that skews my viewpoint but either way, I want to be as motivating as possible. You said you have answers to those questions of "what if". I would say, a 911 emergency phone call and Pea Pod or the 16 year old neighbor who has a car and wouldn't mind shopping for $10 tip. I really appreciate you sharing your story and your honesty. Like many people who struggle
with Parkinsons (INdon't know anybody), MS (who I have a few in the family), CP (whom I know of one), you take the
good and bad. I don't know if you were looking for an answer but to your question but I suspect that you will change a lot from age 21, and in the early 20's it's hard to see the forest when you're burried in it and all you see are the trees, so to speak.
Cheers,
Andrew
Hi Andrew apmast,
BEWARE OF REALITY!!!!???
Hey, I'm not judging, ok? But the economics of the current depression is taking a high financial toll on subsistence survival social contract obligations. While the high costs of medications for epilepsy certainly aggravates depression level economic funding, the free services for such are hardly free when the high price of actualizing these "free services" are considered (such as the taking a fifty mile trip for a couple sample packets covering less than a week's medication vaporizes the "free" aspects, and the same with all other life neccessities, while sacchariny pep-talks still leave a bitter after-taste and an elevated bladder cancer risk).
Looking at the bright side of less than subsistence level funding for subsistence survival because of disabilities, well, there isn't a bright side, and rose tinted glasses don't help beyond the very short term. As far as any NEED to see someone for socially entitled contract results, that are definitely tending to be violated at large, kicking the free will of fate probably works better than kissing the free will of fate, especially since the high priced social contracts for services have been paid, and society is the one now shirking responsibility for its excess happy hour celebrations. Sure, the late-great USSR truly believed that all the disidents and disableds needed "free" services to correct their bad attitude about the best of all possible worlds, but, the USA doesn't need free chain service to over-ride basic Human Rights either.
Thinking about the honest popcorn happy philosophy, whether pie-in-the-sky or just-be happy, versus the body-count of street-people that "let" the environment get them over the night, why be satisfied at just not being alone, or being slightly less unfortunate??? The out-right reality of survival is what survives.
Tadzio
Hey Tadzio,
You're a very good writer, but seriously, what are you talking about? Simplify your point for me. I haven't a clue where you stand or what you're point is. Sorry. :(
Cheers,
Andrew
Hi Andrew,
If I'm a very good writer, and you don't have a clue what I'm writing about, there is a paradox somewhere. I'm sorry your attitude slogans are slogans. The environment doesn't jump to everyone's beck and call equally. The secret lessons on how everyone can win the lottery, if they only really want to, are a sham. There are a lot of sham cures for epilepsy too, but the sham cures require something of value to exploit also. Do you think Uncle GodBucks will buy me a yacht to sail my epileptic self around the world with Brand Name AEDs as flags??? I strongly doubt it, but I have a bad attitude about my uncle.
Tadzio
Sriously Tadzio,
You're a good writer. You use big words and you write in parables and so I don't necessary understand you. No paradox there, just typical response to parables. Anyway, I get the impression you're a cynic. I believe science is working on a cure or better medications particularly for those who have seizures despite medications. I believe in science, but I don't always believe that everybody in the community at large has philanthropic bones in their bodies. I extend that people with Epilepsy have hope, be positive and do what it takes to get treatment.
Cheers,
Andrew
Hi Andrew,
Yes, I use a lot of parables and metaphors as buffers, often to lessen the effects of simple diplomatic mistakes and typos, but also to rightly or wrongly to allude to the often forbidden knowledge involving epilepsy (for example of one type of forbidden knowledge, google Roger Shattuck).
A character in literature that I often take myself as most closely matching with epilepsy is Myshkin from Dostoevsky's "The Idiot." If this makes me overly optimistic, overly pessimistic, overly egotisical, etc., or something else, or just an epileptic idiot is largely beside the point here; but, I certainly want to actualize all of my Human Rights to the utmost.
Perhaps I can illustrate my concern with many of your postings with citations from the works of Steven C. Hayes, and others, with Acceptance and Commitment Therapy (ACT). In my opinion (my philosophy of psychology is more of a hardcore Skinnerian Behaviourist), ACT has fundamental scientific errors that could easily lead to inadvertant severe risks. Epilepsia, 47(12):2173-2179, 2006 is the article "Evaluation of Acceptance and Commitment Therapy for Drug Refractory Epilepsy: A Randomized Controlled Trial in South Africa - A Pilot Study," by Tobias Lundgren, JoAnne Dahl, Lennart Melin, and Bryan Kies. While the use of "values" was irritating, the success rate was too exceptionably high, which is a warning flag in scientific research. I already had a book with a chapter by Dahl and Lundgren titled "Conditioning Mechanisms, Behavior Technology, and Contextual Behavior Therapy" (2008), mainly about how to preclude or interrupt seizures using various conditionings, and ending on the tangent of ACT with epilepsy. A loaded sentence was used: "Acceptance refers to accepting aspects of epilepsy that the patient cannot change." In other works involving ACT, aspects of impairments were divided into two broad classes, clean impairments and dirty impairments. Much about the difference between "has" and "is" continued into absurdity in the cited chapter.
In my opinion, science flew out the window with the division of impairments between clean and dirty. ACT books and articles shy away from, and skirt, this major loophole as if the hole is full of rattlesnakes, mainly because it is. The word "dirty" is certainly a derogatory adjective, and the idea behind the division is not a nice idea. Using it with epilepsy sounds very insulting: I have "clean" epilepsy, while you have "dirty" epilepsy. Trying the use of synonyms, or even purified slogans, doesn't help: I have "strong character" epilepsy, while you have "self-pity" epilepsy. The idea can even turn-inside-out: I have "acceptance" epilepsy, while you have "rejection" epilepsy. Which easily becomes: I have "given-up" epilepsy, while you have "still-fighting" epilepsy. Somehow, the Great John Wayne has maddeningly rode off with resolve in every direction, and as true Americans with character, we all know John Wayne is always right, just like with Ronald Reagan. LOL. Saying each person has clean and dirty parts is a sidestep technicality joke that needs to be cleaned out. (Psych experiments can get spectacular reported cure rates with simple peer pressure to deny problems).
As all great doctors do, we can simply try to backtrack before our major theoretical blunder, and blame the patient for not knowing more about medical science than we do. Besides, it's up to the patient to change what can be changed (with or without our subjective view between good and bad), and it's up to the patient to know what can't be changed (the patient better agree with big brother on that one, or else!!), while medical science is just along otherwise for the free ride with complex issues, as long as somebody pays. (With the prohibitive costs with medical research to unique cases, the costs rule).
The shortages of medical resources being a determinant in that "that the patient cannot change" is a problem inherent to society and not inherent with the patient. While the patient has certain rights to medical care (a hot-button issue!!!), society frowns upon a patient that uses means beyond very limited legal remedies. And, if Ayn Rand doesn't want to give up her selfishness, she shouldn't have shrugged off Atlas, along with Greenspan and baby Self-esteem.
The "cure," the "treatment," and the "therapy" all have severe limitations, all are far from miracles, and all have cost-to-benefit ratios that are often not desirable. "Cure-it or kill-it" doctors can't seem to comprehend the simple observation "Complete control of partial complex seizures is sometimes difficult to achieve. Since the seizure manifestations are often not too disruptive, the patient may prefer incomplete control over the side effects of high doses of medication." (Neurological Diseases, Kutt and McDowell, 19**). Hint: Don't try "The Ludovico Technique" to cure epilepsy (it's almost as ridiculous as tough love). Lifelong, long-term, epilepsy has the added problem of balancing between two realms of impairment, and all the cures are worse than the disease.
If living Catch-22 wasn't such a potential disaster, it would be even more humourous. Right now I'm still in the middle of the Catch-22 of ER pushing patients like me onto the clinics, while the clinics are trying to push us off on ER. With the clinic only about a mile away, and ER 20 miles away, I prefer to walk to the clinic for my AED prescriptions, so the clinic decided my painless migraine was a life threatening seizure emergency that required a ambulance ride to ER and otherwise denied me services and refused to let me leave without signing a release, so I walked the mile back home with my GPS unit. With the denied services, I started the "exhaustion of administrative remedies" trip by filing an ADA complaint against the clinic, and if I have any paperwork money by the 180 day limit, to be ready to file a federal lawsuit against the clinic under the ADA and Rehab Act. The only tool Medicaid categorically needy people have is the burden of legal expenses against reluctant providers, and many of those have been further limited by law. Then, someone called the police on me for my endangering my health by making the mile long walk to the clinic!!! Why, I'm so full of self-pity, I thought I had Constitutional Rights or something in this great country. Of course, our Marie Antoinette advises to eat cake.
Tadzio
Yeah that's hilarious sometimes things just suck and what can you do about it. I'm not really sure what is going on all the time and I don't really know why, I just feel constantly confused, sometimes I have no idea of what is happening or where I am or what is going on. But I am still finishing up my senior year of college... it gets pretty ridiculous, I just go to class, but don't know what is happening, and turn in my homework, get bad grades on tests but whatever. What can I do about it... then I come home and still don't know what is going on and repeat
Hey darkbake. Talk to your neurologist about your medication. What you're reporting could be a sign of too heavy a dosage. I take 600MG of lamictal a day, which is very high. I don't really know what you mean about not knowing "what's happening.". Do you mean, like aura or loss of orientation? Of do you just mean confusion about life and what it's all about? Just curious, please expound!
Cheers,
Andrew
Wow darkbake,
It's nice to know that I'm not the only one confused all the time! lol I've angered more than a few people in my life b/c no one believes that someone can really be that confused!
I spent a great deal of my life hiding out, because I didn't want to be seen as a ditz, but I now see that it has only made my life very dull and uninteresting. It's better to just go out there and live. You'll never regret trying things out!
I agree, never regret. NEVER hide out or worry about what others say. I don't know of ONE epilepsy medication that doesn't report memory and cognition. The medication is designed to control electric impulses.
People look at me funny all the time because I'll be talking and I'll suddenly completely forget the name of someone I know or something I was doing, or I will just struggle for the words to describe something. I have NO PROBLEM telling people that I'm epileptic and that I take medication which unfortunately affects my cognition. To keep on top of things, I read alot, listen to audio books, watch movies and constantly look words up in the dictionary, and work out at the gym.
Cheers,
Andrew
I've had epilepsy for 16 yrs. It is annoying and I am embarrassed infront of my teenage sons about memory loss. I'm not an idiot and just went back to school for my masters to prove to them I can do anything even with this condition. If I want a decent life I can't let seizures run me down.
I decided to enter a medical study for epilepsy. I'm a little nervous but since I'm not working I can risk it.
My life is in God's hands and this gives me some kind of comfort.
Life is precious...
YOU are a testament to the wonderful life that with epilepsy can live if we push through obstacles. Everybody in this world has something they have to push through, so we are not the exception. But often times the depression emotional effect of the medication and our state of mind can affect our outlook. I saw, FORGET THAT and push through it. See the good fortune of this life, the opportunity to do things.
It brought a smile to my face to read your comment, to see that you're fighting through the effects of the medication and condition.
Cheers,
Andrew
First off let me say that I am very sorry for the way that your husband is treating you. He should be supportive of you . However, the negative attitude that you are displaying, is not the way to approach the issue. I have have the disease,, all of the 64 yreas of my life. I had to give up friends, as I had to leave school for over a year. I lost multiple jobs, however,I was taught to use the issues as a way to develop strength within myself. As a result I have taught myself to look at the positives in life.
Set goals for yourself in any area. Celebrate your acheivemants, and examine those where you were not sucessful and plan a way to reach them. This will help you create a PMA (positive mental attitude) about what you are doing and and yourself.
Do not "hate your life", but hate the fact that you have some restrictions, and find ways to do things in other ways. All of the people on this earth have one issue or another to life with. You and the rest of us are fortunate to at least know what ours are. This give us the oppertunity to defeat it. We will never beat it if we let it beat us first.
Well, epilepsy is not a 'disease' but a neurological disorder which means that it's just not working the way it does in the average human. It's semantics.
I agree with you 100% on the other stuff. There are a lot of people struggling emotionally and psychologically. It's people like you that with your words of motivation and help others pick themselves up from their bootstraps and take control of their lives. I'm a tough love kinda person if you can't tell. GET UP SOLDIER! :) Seriously though, get up and live your life! Don't sit around and mope. EVERYBODY has stuff they struggle with.
Jim, thanks so much for being a beacon of hope for others who are struggling with getting motivated and putting their disorder aside.
Cheers, Andrew
First off let me say that I am very sorry for the way that your husband is treating you. He should be supportive of you . However, the negative attitude that you are displaying, is not the way to approach the issue. I have have the disease,, all of the 64 yreas of my life. I had to give up friends, as I had to leave school for over a year. I lost multiple jobs, however,I was taught to use the issues as a way to develop strength within myself. As a result I have taught myself to look at the positives in life.
Set goals for yourself in any area. Celebrate your acheivemants, and examine those where you were not sucessful and plan a way to reach them. This will help you create a PMA (positive mental attitude) about what you are doing and and yourself.
Do not "hate your life", but hate the fact that you have some restrictions, and find ways to do things in other ways. All of the people on this earth have one issue or another to life with. You and the rest of us are fortunate to at least know what ours are. This give us the oppertunity to defeat it. We will never beat it if we let it beat us first.
I have those days, too.
And it does not help if my husband calls me fat, stupid and lazy.
Fat because I can't loose weight, stupid because of memory problems and lazy because my seizures occure first thing in the morning. So I can't be up at the crack of dawn.
I think we waste a lot of time on educating people about our handicap.
Essentially, they don't care.
So, I am getting into my car and driving to the stores for groceries and when that is done I will reward myself because these mundane tasks we can never take for granted.
At 36, I have to really watch what I eat and exercise at least once a day, even if it’s just walking for 40 minutes either in circles in the house (if the weather is bad) or outside or at a mall. But, I have a membership at the YMCA so every day I lift weights which burns a lot of calories.
I typically eat something like this:
In the morning, I drink a glass of milk with some protein powder (chocolate!). I also have a piece of Ezekiel bread with non-sugar-added peanut butter & jelly (the kind without High Fructose Corn Syrup).
Three hours later, I have some almonds and an apple.
For lunch I typically eat a salad and some meat, say diced chicken. I usually add 2 TBSP of ranch dressing (the kind with low carbs) .
Three hours later, I have another snack. Milk, nuts or something light.
For dinner, I have a typically meal, just one plate.
Nighttime snack, I eat some popcorn and another protein drink.
I don’t eat large quantities of food in each meal but as you see I eat small amounts every 2.5-3 hours. I drink about 2 gallons of water a day. I don’t eat frozen meals, I DON’T drink soda and I DON’T eat candy, cakes or sugary stuff. I DON’T eat sugar cereal or snack on anything but fruits. Every Friday night, I reward myself and eat one meal of something I love, like taco bell or a few slices of pizza and a beer or something but that is always after I workout or exercise which is the best time to eat something junky.
Having a spouse that doesn’t support your emotionally can be difficult but you’re in charge of your body and your life. So, do it for you. By the way, you CAN lose weight. Unless you have some unusual physical condition medically diagnosed (which is very rare) you CAN lost weight. Just look at your diet and exercise.
People may not care if you have epilepsy but as long as they know you do and you’re confident that if you didn’t have it you’d be different, screw them! :) Well, respectfully, forget them!!
I wish you all the best.
Cheers,
Andrew
i'm sorry to hear about your husband attituide but i'm also sorry to tell you that you are not helping you have to belive in yourself and don't lose faith in god ... you are not fat, nor stupid or lazy its just symptoms of illness that you have to deal with maybe you have to change things in your life style but start with beliveing in your strength you are not a handicap and if you allow this thoughts to ruin your life i'm sure i'll not bother my self to tell you not to do this.
Nancy, I agree 100%. Thanks for helping to motivate people. I read a lot of comments from people who are just struggling with accepting epilepsy and not worrying about what other people think. If I could help everybody struggling with it, I would, but even if it's ONE person, I would be happy.
Cheers,
Andrew
Having had siezures since I was 15, and being 47 now, I can fully understand the feelings. I have also been released from jobs because of siezures. Been called a GOOK, have gone BROKE paying Ambulances so they will tell me that I have Epilepsy!
I went 10 years refusing to take meds, and had 3 siezures. Now, taking Lamactal, I ave 2 siezures per month.
Also, cant get benefits through the government because Soc Sec dosent have a firm grip on if its deserving of benefits,,,,all because I cant keep a job because of my siezures!!!!!!!!!!!!!!!!