For epileptics, disease no laughing matter

Are seizures funny? Joy Bardwell doesn't think so. The Daytona Beach, Fla., woman has epilepsy-repeated seizures. Read more
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Anna Martin

Round Rock, TX

#1 Mar 24, 2006
My daughter has had epilepsy since she was a baby. She is 23 now and we are still struggling with keeping her sizures under control. They are scary and dangerous because she loses complete control and could hit her head when she falls. She could get sick and choke because she cannot turn over. People have died because they have been alone when they have a seizure. We cannot leave her alone for too long unless she promises to stay on the sofa or on her bed while we are gone. She hates that she has to be worried about this. She will never live alone.
Sandeep_from_Ajm er

Jaipur, India

#2 Apr 1, 2006
In India, Epilepsy continues to be a social stigma. However, with support from family and friends, one may find the guts to disclose that they have it.
beth cassels

Hounslow, UK

#3 Apr 15, 2006
When reading the recent article regarding epilepsy and its stigma in Indiana it really made me feel at ease.
Since the age of ten, I have "put up" with jibes, name calling and so on that accompany Tonic Clonic seiures and although I have been told by many people that "they sympathise" and really do understand how I feel when I realise that I have had a seizure (generally,I loose control of my bladder and bowels), there most certainly is a stigma attached to Epilepsy.
Believe me, when I read Anna Martin's and Jaipur( from India's article,I knew I was'nt alone; others feel exactly as I do and the stigma is worldwide, not only in Scotland. Its dusgusting.Beth from South Queensferry, Scotland
mickey

New Braunfels, TX

#4 May 2, 2006
I agree Epilepsy is no laughing matter. Sometimes you do have to step back and just let go. Meanning you can't always live in a fog. Because that can make it even worse with alot of our mindsets.
In alot of places Epileptic is a bad word. I've gotten that on a international basis, I found from someone in the Epilepsy world that it is a big much to do over nothing. These people can not tell me how to think for myself!!! How i'm supposed to speak.

Mickey
Galveston TX
Epilepsy Sucks

Casselberry, FL

#5 May 5, 2006
Stepping back and letting it go doesn't mean allowing idiots to make fun of it on Television, and send wrong information about proper first aid out to an already uninformed population. I am tired of the jokes. I am tired of people using epilepsy to hurt others. You would never hear Charlie get on there and joke about himself having AIDS! He'd be in court faster than his feet could carry him. IGNORANCE IS NOT BLISS. ITS WORSE THAN EPILEPSY...
okie

Tulsa, OK

#6 May 7, 2006
I guess im lucky ive had epilcy for over 30 years and so far havent had anyone make fun of me. So sorry to here that its happened to some out there I just take my problem in stride and do the best i can to controll the sezures. I do wish that a cure could be found as I know that there are some out there who dont have as good luck controlling the sezures. I only have one every now and then. Ive had some docs say that you can out grow them but so far that hasant happened to me. Anyway good luck to those of you out there with this problem mabey some day there will be a cure for us.
Bruce Moreau

Cedar Park, TX

#7 May 22, 2006
Anna Martin wrote:
My daughter has had epilepsy since she was a baby. She is 23 now and we are still struggling with keeping her sizures under control. They are scary and dangerous because she loses complete control and could hit her head when she falls. She could get sick and choke because she cannot turn over. People have died because they have been alone when they have a seizure. We cannot leave her alone for too long unless she promises to stay on the sofa or on her bed while we are gone. She hates that she has to be worried about this. She will never live alone.
Hello Anna, I happen to notice your posting and where you're located. I'm down in Kyle and just want to let you know that there is an Epilepsy Support Group (my group) that meets at the Brackenridge Hospital in Austin, on the second Monday of each month. This is just for the rest of 2006. I'll be moving the dates up to the second Wednesday of each month for 2007. Smae hour and location, just different day of the week. We start at around 10:30am in the North Conference Room #2, which is at the north enterence area of the hospital. I know what epilepsy is like because I have it myself.

-Bruce
W Waldron Ohio

Fairfield, OH

#8 Jun 6, 2006
I have had variants of the stuff since 1970, gone into toxic shock from medication and only found out in 2005 my life is rough compared to other people's lifestyles. Do you suppose that is why I lost jobs when I had an episode with a hospital stay? If so, why is Social Security doing such foot dragging when my neurologist is reccomending medical disability with the enthusiastic support of an attorney?
The new meds cost $1500.00 per month, but I can talk about it and smile at life now. It may even get controlled again. With this attitude improvement do you know anybody in Ohio that has social groups for people with our neurological persuassions?8532
allen

Wapakoneta, OH

#9 Jul 23, 2006
I have had epilepsy my entire life. Luckily, it has been controlled by barbituates. I have paid a social price with the expulsion from the primary family unit. My brother and two sisters will have nothing to do with me. My brother has told me me I was an embarrassment to myself as well as others and that epilepsy has been an excuse for so called " bad behavior". Socially I look and act normal, but have never let anyone know that I have had it. The only ones are neighbors, and relation that I grew up with. I am a social outcast, because if you reveal your situation, then suddenly you are victimized and defined by the condition, and not your accomplishments. I have beeen very lucky, but keeping the "secret" is killing me. I am so lonely..
Mike

AOL

#10 Aug 3, 2006
allen wrote:
I have had epilepsy my entire life. Luckily, it has been controlled by barbituates. I have paid a social price with the expulsion from the primary family unit. My brother and two sisters will have nothing to do with me. My brother has told me me I was an embarrassment to myself as well as others and that epilepsy has been an excuse for so called " bad behavior". Socially I look and act normal, but have never let anyone know that I have had it. The only ones are neighbors, and relation that I grew up with. I am a social outcast, because if you reveal your situation, then suddenly you are victimized and defined by the condition, and not your accomplishments. I have beeen very lucky, but keeping the "secret" is killing me. I am so lonely..
I was first diagnosed back in 1993 after suffering a seizure & ending up in the hospital myself,since then I've been on medication for it & havn't suffered any seizures since then.

It will be 13 years on the 19th since the initial incident occured & while there are limitations to being on medication such as no alcohol & I can't drive it is only a small price to pay for the ability to remain seizure free....the only downside is all the DR. visits for prescription refills!!!
Coming Out

AOL

#11 Aug 3, 2006
Coming Out

Last night, I came out to the world. After nearly 45 years in the closet, I exposed myself to everyone, locally anyway. At the Torrance city council meeting last night I spoke out, with hopes of making a difference in behalf of Medical Marijuana, announcing,“I have Epilepsy” A condition I’ve been able to hide for years with complete control of seizures using Marijuana. After many years of addictive drugs and serious problems trying to control my life, I found that control and it works.
I don’t believe my speech helped much, council members had made-up their minds well before the meeting started. Don’t worrier; I’m not giving up.

Reason for coming out? Its time, it works, and its something I believe in.

Sure, there’s plenty of research claiming it works and I’ve read it all. My deduction, I don’t use marijuana I have seizures, I use marijuana, I don’t have seizures, without barbiturates. I know that’s not too scientific but what would you conclude?

Criminal? The jury’s still out…..or is it. Not according to the people of the state of California. For many years, long before Ca. said its ok, I was a criminal. Yes, bought it, possessed it, and used it regularly. Well over 3-strikes I’m sure and probably 30 to life.
I ask, if you were I, what would you do?

Coming out….. That I’m an Epileptic? Or that I use marijuana?…Epilepsy itself carries enough of the same prejudices and stigmas as do countless other diseases and conditions. Simply stated, living with Epilepsy (understated) makes daily life a lot more complicated, IT SUCKS.

Marijuana?…. Now you’re dealing with other issues such as legality, principles, morals, values, ethics and don’t forget politics. I assure you, my public acknowledgement of not only my medical condition but also the fact, I use marijuana, irrelevant why. This will change my life forever.

Please, all I ask is you don’t judge me and don’t call me a druggy, dope head, pothead or stoner and I’m not a Zombie. If you’re going to recommend that I pursue the traditional manner for control of my condition, already done, that story is good for a book.

I do believe in giving credit where due. I would be lying if I said that I put my trust and faith solely in marijuana, it’s simply not true. I believe in “That Man Upstairs” yes “God”. Intrusting my faith in him has made life acceptable. My daily prayer witch always includes the words “Heavenly Father, please help me thru this day seizures free”……A prayer not much different than many others like myself. You know, he created and made us all special, afflicted more so. My advise; always make sure your trust and faith are in the right place. Personally, I receive a great deal of daily self-confidence knowing he’s there. Something all the afflicted and suffering need.

In closing, my only request is we all reflect on the true meaning of the word “Compassion” I believe, compassion takes into account the suffering of others and attempts to alleviate that suffering as if it were one’s own.
JS

**********GOOD LUCK GREEN CROSS**********
==========

Compassion is not sentiment but is making justice and doing works of mercy. Compassion is not a moral commandment but a flow and overflow of the fullest human and divine energies.--Matthew Fox
Mike

AOL

#12 Aug 3, 2006
That's a tough call to make as I prefer to use tried & true therapies/medications to keep the condition in check myself.

That's not to say that I'm passing judgement on you for the manner in which you've chosen to confront the disorder..I mean if it does help then more power to you but I just prefer to stick with what seems to be working for me despite some of the setbacks & limitations that the medication I'm taking produces.

It's terrible that there has been such a stigmata attached to the disorder,I mean none of us...niether you or I asked to be afflicted with it but it just happened.People shouldn't display such prejudice towards others just because they have an illness that's managable,but not curable & despite our limitations people should realize that we're for the most part just as capable of leading productive lives as anyone else & are equally worthy of respect.As long as you're able to manage your disorder that is all that matters & not what others think of you for it.
Joe

Pittsburgh, PA

#13 Aug 29, 2006
My daughter is 21 and we have also had to be everyday advocates for her when it comes to her epilepsy. But we must be the exception as all we have done for her over the years has led us to making sure she is out and about and has a good job to go to. The full disclosure for us ahs worked as her employer dosent have any problems if she has a seizure and takes care of it when and if it does occur. We have been wrestling the seizure monster fo 21 years and I am not about to let peoples ignorance stand in the way. Education is the only way to bring this out of the dark where it should not be hidden.
Shar

Orlando, FL

#14 Sep 20, 2006
Sandeep_from_Ajmer wrote:
In India, Epilepsy continues to be a social stigma. However, with support from family and friends, one may find the guts to disclose that they have it.
Basically it is here, too. Most people adjust, but you still have to be careful of who you tell and how you tell it if you can, that's ridiculous, isn't it. It's not bad enough to have the crap but that piled on does not help. Since I was once told that "stress is an aggravant to seizures" Of course, when you think about it stress is an aggravant to almost anything
Shar

Orlando, FL

#15 Sep 20, 2006
Epilepsy Sucks wrote:
Stepping back and letting it go doesn't mean allowing idiots to make fun of it on Television, and send wrong information about proper first aid out to an already uninformed population. I am tired of the jokes. I am tired of people using epilepsy to hurt others. You would never hear Charlie get on there and joke about himself having AIDS! He'd be in court faster than his feet could carry him. IGNORANCE IS NOT BLISS. ITS WORSE THAN EPILEPSY...
There is not doubt in my mind that I have seizure, however since I am with me 24/7 I'm not sure if it's that even now and it has been over 20 years. There seems to be so many reasons and I am fortunate enough not to have to deal with it as much as others...yeah, those idiots joking should try a seizure on for size just once--bet their dumb attitudes would swiftly change--Be like a duck is my motto--I've let it roll off plenty of times.
Beth

Wilmington, DE

#16 Sep 20, 2006
Hey y'all. I live in the Arab world, and I have a minor form of Epilepsy; thankfully, it is almost fully controlled via Keppra and Lamictal. I can lead a mostly normal life, although it does get to me from time to time; many people in the Arab world think that the epilepsy is a psychological disorder/a divine punishment. I can't say I've ever been made fun of, though. My parents always say that I must keep this to myself, etc. I am not ashamed of it...but I have to keep it to myself in order to preserve social order. Damn.
nikki

UK

#17 Oct 18, 2006
I was diagnosed with epilepsy when i was pregnent with my son whos now 5, i had my first seizure when a was 19weeks and because of that i went into labour, luckily we managed to stop it but it happend agian at 24 weeks then again 38 wks but again i was lucky . my son wasnt born untill 2weeks after his due date, i have put up with alot of ridicule from ignorent people, 1 example I had a seizure in a shopping center with my son who at the time was less than a year old, when i came round i asked the nearest person to me if she would help me across the road as thats were my husband was, she replied NO I DONT HELP DRUGGIES and with that she walked away leaving me post seizure and frightend with my son in his pushchair, It gets worse, i have been mugged, left at roadsides by people passing by and laughed at by people who have assumed its all a show for there bennefit. I dont leed a normal life as my seizures are not controlled, i cant take my son swimming or to the park ect as it puts him in danger although hes a wise 5yr old and understands what the problem is, I also have abcent seizures that my son cant recognise so he doesnt know to stay with me if we are out the last one i had i walked the streets for nearly an hour befor comming too so now im basically housebound as i wont take my son out alone i have to rely on friends to come with me but they all have lives of there own,. im sorry for rambling on but god it feels good to get it out!!!!! people need to realise how badly we are effected by our illness
josie

Germantown, MD

#18 Nov 2, 2006
My daughter Jennifer is 24 years old. Unfortunately
her seizures aren't under control. She is having
alot of swallowing and laughing spells during the
day, while taking Primidone and Epival. The neurologist does not know how to help us. Has anyone
any experience with laughing spells. They tell us
it might be Tinnitus. I'm not so sure.
Mike

AOL

#19 Nov 4, 2006
Beth wrote:
Hey y'all. I live in the Arab world, and I have a minor form of Epilepsy; thankfully, it is almost fully controlled via Keppra and Lamictal. I can lead a mostly normal life, although it does get to me from time to time; many people in the Arab world think that the epilepsy is a psychological disorder/a divine punishment. I can't say I've ever been made fun of, though. My parents always say that I must keep this to myself, etc. I am not ashamed of it...but I have to keep it to myself in order to preserve social order. Damn.
Well that's good that at least you've got it under control,I only have to take one medication per day <dilantin> but the hard part is getting the dosage right as it alternates back & forth each day.When I was first prescribed the medication back in 93 I was prescribed 300 mg per day but that didn't seem to work so they bumped it up to 400mg per day,which resulted in me becoming totally out of it & barely able to function so it has since been set at a 300 mg one day 400mg the next alternating & so far it seems to work without any side effects.

I'm able to function almost normally but still can't work,or drive as a result so I get assistance from family members.The only thing I hate worse than being on the medication is having to go in for refills every few months...not to mention the annual blood draws to check the levels....last time that lab tech really made a pin cushion outta me.
Mike

AOL

#20 Nov 4, 2006
josie wrote:
My daughter Jennifer is 24 years old. Unfortunately
her seizures aren't under control. She is having
alot of swallowing and laughing spells during the
day, while taking Primidone and Epival. The neurologist does not know how to help us. Has anyone
any experience with laughing spells. They tell us
it might be Tinnitus. I'm not so sure.
I've never heard of patients with the disorder experiencing any laughing spells.Have you & your daughter considered trying a different medication?

I do know that there is such a thing is "tonic" siezures,where the person appears to have a blank stare from time to time,as I've had a bit of experience with it myself even while on my medication....fortunately it's nowhere near as bad as having the "clonic" siezures in which you start shaking & are on the verge of passing out,althoug hit is kinda distracting & almost embarrasing from time to time.

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