Struggling With Epilepsy -- video.newsweek.com

[AstarteVX]

Poor guy =( I hate the drugs, I count myself lucky that I've been seize free for nearly 2 years, and refused to take the drugs after a neuro told me that I would be "slow but we can experiment with different drug combinations." Best wishes to you and hope that you find what works for you.

[alucas41192]

Now I have gone almost two years without having a seizure. It was a wild ride, but with family,friends, and God in my life, it made it a whole lot easier to get through.

[alucas41192]

I was diagnosed with epilepsy when I was six and a half. Before the doctors even knew I had it, I had one falling off of the monkey bars on a a swingset at a friends house. Once I was diagnosed I was put on the ketogenic diet for three and a half years with reduced them to maybe a couple a month instead of ten a day. I was then put on a medication called Keppra which helped a little more. The scariest yet best part was when I had surgery at twelve to get a vagus nerve stimulator (vns).

[madkittyjoey70]

i was diagnosed with it when i was 10. i've had them in every public place imaginable which is soooo humiliating! :'(

[username7348]

4 seizures a year is awesome. I'm happy for you. Right now I'm at about 8 and I'm stoked for it.

[anthonyjamesphipps]

vaccinations

[Cantychic13]

epilepsy is a cruel disorder and it  has effected my family hard because my little brother has it.

[pplrsme]

Hi, my name is Shirley Combs and I live in Hazard, KY. Your story sounds so much like mine . I also do the scream thing because all of the air is being forced from my lungs. That scream is what always brings my husband. I was doing pretty good with my Depakote up until this year, I was taking 5-6 a year but I take them at night. This year it has picked up to about 25 . I also had my first combative ictal period the police came and tased me 3 times to get me in the ambulance. I need new drugs.

[annalee9]

Your story sounds so much like my sons -he also was diagnosed when he was thirteen. He is now is twenty years old. He has what are commonly called grand mal seizures-somewhat controlled. I too thought he was fooling around on the ground till I rolled him over! We walked the hall in the hospital that first week and I told him this could be a lot worst -we can deal with this! He has now gone away to college. He wants to be like everyone else-to me he is!

[voison]

I do suffer with those having only marginal epilepsy too but the ones who suffer the hardest are never seen, cause they dont really seem to fit in to the picture of epileptics being completely "normal ones", which is the image these people want to project of themselves at any cost

[voison]

yeah thank god it can be controlled. dont´t get me wrong, i do suffer with you, but i´m sick of seeing all these people who come out as an epileptic saying "I had one seizure" and they believe they know what it´s like to be an epileptic who see their whole lives being controlled by this illness, not knowing what it means when it REALLY does. If you have seizures on a daily basis and you cant even go out without getting fits then you get to know the real social consequences.

[PersimmonOX]

Voison, I understand your irritation, but the outward severity of seizures does not say anything about how controlling the illness is. Think of the people whose seizures consist of fear attacks, or absence seizures 50-100 times a day. Or those who has complex partial seizures where the aftermath lasts for days ... or are extremely humiliating. Not to mention gross side effects from the meds, like depression. Epilepsy almost always controls life to an extent that it requires courage to handle.

[electricz131]

I have epilepsy as well... I have whats called grand mal seizures which is the most severe that i kno of... diagnosed about 6 months ago since then 20 or more seizures that have been documented... I totally understand what he is going through. It is a HUGE setback when it comes to being a normal citizen. Cant drive. Cant drink. Pretty much cant be left alone...

[headbangers79]

poor guy.i feel bad for him

[samueltristan]

by the way reading trigger the seisure with me does `anyone else have that??

[PersimmonOX]

samueltristan, I don't, but it's heard of before. Same as toothbrushing, combing and other repetitive movements.

Take care.

[pplrsme]

Yes, I thought I was the only one because no one ever talks about reading. I love to read and now can only do it for a few minutes, It ok at 1st then my mind starts having trouble processing and my face will jerk with myoclonic jerks right before it happens.

[samueltristan]

@pplrsme yeah man reading is fucked up with me to that triigers it for me, and only that i am a dj with fast crazy music and the parties are with alot of blinking and moving lights and all, but thats no problem at all but when i try to read the newspaper i get scared ive been seizure free for 3 years but thats because i avoid reading. btw I dont have it with small pieces of text like comments here on YT or facebook but with whole pages in front of me i feel it right away...very very difficult

[samueltristan]

i have epilepsy asweel but between 5 or 10 sezures a year thank God not so much as other people, it must be rel hard to have multiple seizures a day. im losing my mind of the fear to have seizure especially in public places.Mosttly when i feel it coming its to late nd i alway end up in the hospital....i smoke weed and use medication but that doesnt take away the fear....its fucked up

[pplrsme]

I also smoke the weed to calm my nerves but every time I go to the doctor they say that it may be the cause even if I havent smoked one in a few months (it stays in my system a while). I believe this is because they really do not know what is the cause and dont have any thing else to blame it on. If some of them "normal" people had to live our lives they would be on xanax and weed and any thing else.

[OxleySchmoxley]

@samueltristan Yeah, I fear having one in public all the time, I was at the mall the other day and started to have one. I got out just in time and made it to the car. But the fear is always there. 

[wingtote]

i was a sophmore when i was diagnosed

with epilepsy but was told that i had had epilepsy as a child but did not know it. i might have seizures everyday or every two days but haved learned to live with them they are not under control i have been on many kinds of medications it does help a little because if i forget to take a dose i have no control i get sick to my stomache and get headaches then the seizures come.

[thisiswhat1think]

Just wanted to say thanks for your perspective. I've got partial complex but it's now under good control. I used to have 2-3 seizures/day. I have an immensely blessed life knowing there are fellow epileptics that have it so much worse.

[tjsstj]

I want to commend you on speaking out about your battle with epilepsy. The way you worded it was brilliant and easy for those not affiliated with epilepsy to understand. My son is four and has epilepsy. He wears a helmet, sometimes needs a wheelchair and has seizures daily but I still think of our family as lucky because there are still others out there worse off. Thank you for talking about epilepsy and for making it known that its not something to be laughed about nor to be ashamed of.

[Chuckjagermeister]

I had mild temporal lobe seizures from about 14 to about 20. They were like bizarre, waking dreams. There was a weird, mystical/psychedelic quality to them. It may sound strange but sometimes I actually miss them.

[zep4141]

This is not unusal to feel one misses the seizure from occurring. Many issues may be involved.

[faithangel50]

My heart goes out to you. I have dealt with epilepsy since 1966. You will be in my prayers. God bless you

[coachcaligirl123]

thats sad :(

[tegid247]

I have Temporal Lobe Epilepsy. When I have a seizure my muscles go tense and I make the same noises that you describe in your video. I have teamed up with a professor in Tampa to adapt the ketogenic diet to control my seizures. The medical profession in the UK refuse to help me. The diet has improved things for me - it is complicated and is sometimes compared with the Atkins diet. Thank you and WELL DONE for putting this video on YouTube.

[Jazzyteach65]

as someone who has temporal lobe eepilepsy, I can relate to this., Very moving

[faithangel50]

I also have seizures oriinating from my temporal lobe. I have complex partial seizures

[GaySingleMulatto]

100 hundred years ago, I saw a documentary on I believe 60 minutes.  What they revealed was that children fed a high fat diet (whole cream, bacon, butter, etc) alleviated the seizures. Fats somehow calmed the electrical fields in the brain. I'm so sorry you have to suffer this.

Hugs,

Adrian

[PersimmonOX]

I say! Dan Wheeless is presenting himself and his epilepsy so good. Love the personality you show us, mr. Wheeless.

[faithangel50]

I agree with you 1000%.

[anavas]

I feel his pain with this. I have the same situation and its really frustrating. I really wish they could come up with a "cure" for it. I don't believe that weed would help it though.

[ZeYaaah]

move to cali and get prescribbed stuff

[Alytoner]

smoke weed helps epilepsy.

[GotzEthan]

smoke weed, it helps.

[DontClickMyUsername]

lol at gotzethan