Anyone Else Here Deal with Epilepsy ? Lets keep this Mature ....

[onewearz]

like the title says , i'm going on a year after finding out i'm epileptic. i'm having a rough go for real. have about 1 seizure a month, i'm scared as hell all the time, feel like i'm losing it .

just wondering if i got company on this sh*t boat. if it's too personal a question for this place it's understood, but any advice or shared experiences is appreciated ...

 

[thadocta]

My cousin had it. He had medication to kinda prevent it but he was a taxi driver so taking them would make him tired so he stopped taking then for a while. Then he had one in the middle of the night and passed away.

I guess you should just listen to ur doctor and do as he says

 

[onewearz]

Dam, thanx for not putting anything else in my head to stress about ....

 

[djyoung08]

Dang that's rough OP.

Just keep a close contact to your Doctor and follow his/her instructions.

I wish u the best

 

[thadocta]

Dam, thanx for not putting anything else in my head to stress about ....

sorry just trying to be real

 

[Gill Baka Esq. LLC.]

OP sorry to hear that. I have one child I do intervention for speech and language at a head start program for and he's epileptic and poor kid is only 5. He takes med's for it but it leaves him with a tremor and some days he's super tired so it's hard to keep him focused on the goal. Especially when I see him some days and he's so into the activity contrasted on his "off" days.

But your an older dude just do your research, don't try anything too cooky and listen to the doc. You'll be straight.

 

[deletedelete]

one of my real good friends has it. after he switched medications he started having them on a consistent basis. one seizure i was with him visiting a friend at school and after a night of red bull addled stupid college bar cocktails, he had one with us. from what he's told me, sleep deprivation, lots of caffeine (like energy drinks), and alcohol augment it. so try and stay away from those things.

his brother in law is in medical school and advises him against smoking to assuage the symptoms, but from his own personal experience and from what he's heard from other people with epilepsy, smoking really really helps. so maybe that'll help you.

 

[jecca650]

My dog is epileptic and it really sucks. I hate that he has to deal with it. He had his first seizure at age 2 in the middle of the night and we had no clue what was going on as we had no idea he was epileptic. He usually has a seizure every couple of months and they last about 45 seconds. It's horrible seeing someone you love so much go through that ****. Even worse since he's a dog and can't describe how he's feeling or what's going on. Once the grand mal is over it's like he hasn't seen us for days and starts jumping on top of everyone in excitement(mind you this is a 115lbs german shepherd). He takes a bunch of medication, but we're switching him to raw food diet which is recommended by other epileptic dog owners. Crossing my fingers it'll work to help control the episodes.

 

[doitallpaul]

i did, i got it when i was like a sophomore in college, i would be out of it for like 5 seconds and rock my head back and forth...went on a few medicines and didn't work, one did work but i was allergic to it and broke out in hives...now i'm on a new medicine and been good for over 2 years...i never really spoke about it except to a few close family members, nothing to be ashamed about but i'm just a private person

one time i was driving and i had an episode and i swerved into the left lane, i was alright and luckily no one was in the other lane, that's when the ish got real to me and i was told to stop driving for a little while, naturally my doctor is one of the best, if not the best in the world...if you're in nyc or jersey check him out...as long as it is controlled you have nothing to worry about, you can't die from epilepsy itself, only cases are if you fall and really hit your head hard enough or if you choke on your own spit while having an episode or convulsing, that's why it is higly recommended that you are put on your side in those situations.

 

[GTA 809]

I had a grand mal seizure when I was 9. Doctors didnt do anything and said they wouldnt start me on medications unless I have another one, even though I have a family history of seizures (HHC FTL). Had another one when I was 10. It was shortly after I got out of a swimming pool. If it happened just a few hours earlier I probably would've drowned to death. I was put on medication for like the next 4-5 years. Never had another one. Hopefully it stays that way.


"i never really spoke about it except to a few close family members, nothing to be ashamed about but i'm just a private person"

x2

 

[doitallpaul]

I had a grand mal seizure when I was 9. Doctors didnt do anything and said they wouldnt start me on medications unless I have another one, even though I have a family history of seizures (HHC FTL). Had another one when I was 10. It was shortly after I got out of a swimming pool. If it happened just a few hours earlier I probably would've drowned to death. I was put on medication for like the next 4-5 years. Never had another one. Hopefully it stays that way.
"i never really spoke about it except to a few close family members, nothing to be ashamed about but i'm just a private person"
x2

you still on medicine b?

 

[la-ca]

Please be carful OP and take your medication. Very important.

 

[GTA 809]

you still on medicine b?

No only took meds for like 4 years, then they slowly weened me off of it.

 

[dajoka004]

I don't know what medication regimens you've been through, but a year into this your seizures should be better managed than 1 per month.

 

[doitallpaul]

No only took meds for like 4 years, then they slowly weened me off of it.

i still take mine bc i know it works and if i get off of it i really am taking a risk, i take a conservative approach.

besides taking a pill twice a day isn't a big inconvenience for me

 

[onewearz]

I don't know what medication regimens you've been through, but a year into this your seizures should be better managed than 1 per month.

I'm on carbamazepene 800 mg a day. I was fine for awhile but now they seem to be happening more frequent. They only happen in my sleep , my wife has recorded a couple but I really can't watch em . What's really bothering me lately is how I feel like I'm losing it . I'm nervous 24/7 always scared to have one . The afterwards is what sucks the most, takes me almost 2 weeks to feel somewhat normal again .

I got an appointment Thursday , gotta talk to my doc and see if maybe changing meds will do it. I appreciate the info everyone ....

 

[True Blues]

A friend who I used to work with deals with severe epilepsy. He has regular clonic-tonic seizures (before he changed medication regimes, he was having them biweekly), to the point where EMTs know him by name, and the longest recorded seizure he's had was over an hour.

But he manages.

He's very good about taking his medication, and is well aware of his signs (In talking with him, stress seems to be a trigger). He's sought some experimental treatments, and spent time in the hospital to test these methods. Perhaps most importantly, he's stayed positive, and been very active in spreading awareness about the disease (with a local epilepsy advocacy group) and trying to reduce the stigma surrounding it. Building that support group around him was very important given his history with epilepsy, and was particularly instructive for someone like me who knew nothing about epilepsy prior to meeting him. I'm not sure if this is something you're interested in, but I would suggest that if you find yourself worried about the prospect of a seizure at work, to at least educate your peers about the proper procedures in such an event. Doing so has helped save my friend's life several times.

I wish you the best of luck, onewearz. Seriously.

[Edited for grammar.]

 

[wanksta23]

OP, do you drive?

Doctors thought my cousin had it, but it was the lack of her diet/stress

she would have constant seizures and wasn't able to drive for almost a year because the doctor wouldn't let her

 

[onewearz]

Yeah I drive, doc said its cool . Like I said I only have em I my sleep .

True blues , good lookin my dude

 

[waitwut]

My cousin had it. He had medication to kinda prevent it but he was a taxi driver so taking them would make him tired so he stopped taking then for a while. Then he had one in the middle of the night and passed away.

I guess you should just listen to ur doctor and do as he says

Yeah I drive, doc said its cool . Like I said I only have em I my sleep .

True blues , good lookin my dude

o lawd....
best of luck to you though OP

 

[Mister Meaner]

onewearz hope all is well on that front, Knicks bredren.

Was reluctant to admit to myself that I have developed this wildly scary affliction.

Spoiler

1st episode was last March and I’ve been on meds [inconsistent] since. Thankfully I can count on my hand the number of episodes altogether. Was in the ER about a month ago & my med levels were expectedly low from the blood screen.

I’m willing to bet my added malnourishment in this time is related tho I’ve yet tho I’ve query either medical team about the other side of my issues. MyChart should have handled that i initially thought but closed mouths don’t get fed…

Already feeling much better since going full gf since Jan. Weight slowly picking up but my stomach still needs more healing. Might just go in for a radical treatment as recommended by a friend doc in gastro.

And absolutely no drinking of alcohol & watch for those drug interactions.

 

[Mister Meaner]

didn’t even realize this is nearly 11*

 

[onewearz]

onewearz hope all is well on that front, Knicks bredren.

Was reluctant to admit to myself that I have developed this wildly scary affliction.

Spoiler

1st episode was last March and I’ve been on meds [inconsistent] since. Thankfully I can count on my hand the number of episodes altogether. Was in the ER about a month ago & my med levels were expectedly low from the blood screen.

I’m willing to bet my added malnourishment in this time is related tho I’ve yet tho I’ve query either medical team about the other side of my issues. MyChart should have handled that i initially thought but closed mouths don’t get fed…

Already feeling much better since going full gf since Jan. Weight slowly picking up but my stomach still needs more healing. Might just go in for a radical treatment as recommended by a friend doc in gastro.

And absolutely no drinking of alcohol & watch for those drug interactions.

seeing this thread 11 yrs later and knowing how nothing's really gotten better , not worse but not really better.

best advise i can give anyone is stay on top of the meds and don't miss. probably my biggest trigger.

all my best

 

[Mister Meaner]

While doing some meal prep research last week I saw this. There’s some science to it as well.

Pear isn’t a big part of my diet but it is this coming week moving forward. I have multiple rzns now to down about 2 per day & be better for it.