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Epilepsy, seizures...


Drumnut
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QUOTE (Drumnut @ Jun 30 2010, 12:01 PM)
None today so far... unsure.gif

I understand how it must be, living with the uncertainty and the constant struggle with meds, etc.

 

It's different with my son, but still...I understand all the same. hug2.gif

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Had another one yesterday. My Dr won't let me switch back to a drug I liked. He asks me, "Why do you want to switch, you're not having seizures?"

 

Hmmm, maybe Doc should maybe have another look... but don't try anything different that might work!

 

 

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QUOTE (GhostGirl @ Jun 30 2010, 01:42 PM)
QUOTE (Drumnut @ Jun 30 2010, 12:01 PM)
None today so far...  unsure.gif

I understand how it must be, living with the uncertainty and the constant struggle with meds, etc.

 

It's different with my son, but still...I understand all the same. hug2.gif

My boy's in the same boat as both of you- Autism AND seizures.

 

The main thing we're doing now is trying to control his seizure activity because it's affecting his speech and probably more. He hasn't been able to say words for a couple of months now but he used to have a small vocabulary before.

 

We're on medicine #6 right now (just started tonight in fact) but it's supposed to have a potentially terrible rash side effect. We've tried different diets (gluten-free / ketogenic / low glycemic) and they all didn't work. We're getting into VNS / brain surgery territory now and that's some scary shit to think about.

 

I mean, he's only 4. sad.gif

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I need to stop drinking Coke Zero, it contains Aspartame and it's not supposed to be good for people with neurological conditions, so I've read. I drink Coke Zero like it's water...
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QUOTE (Drumnut @ Jul 6 2010, 04:56 AM)
I need to stop drinking Coke Zero, it contains Aspartame and it's not supposed to be good for people with neurological conditions, so I've read. I drink Coke Zero like it's water...

Yeah I can back this up 100%

 

When my son was on one of the diets we gave him sugar-free Jello and his seizures went way up. It had to be the aspartame because the seizure frenquency went back to "normal" after we stopped feeding it to him.

 

I don't want to hijack Drumnut's thread too much but we had a bad episode yesterday morning. My son had a drop seizure and went backwards into a wall mirror, which then fell on him and shattered. My wife took him to the hospital and he ended up getting a few stitches in the side of his head.

 

I cleaned up the mess when I got home: the shattered glass on the floor, the washcloth which was pretty much soaked with blood. It was a bad scene but luckily my little guy's better and happy now.

 

Drumnut, do you or have you ever had to wear a helmet? We are going to pick up an "official" hospital one in a few days (we had one fabricated the other week but it takes awhile to make). Any advice on something like that?

 

Thanks. smile.gif

Edited by Del_Duio
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QUOTE (Del_Duio @ Jul 7 2010, 05:27 AM)
QUOTE (Drumnut @ Jul 6 2010, 04:56 AM)
I need to stop drinking Coke Zero, it contains Aspartame and it's not supposed to be good for people with neurological conditions, so I've read. I drink Coke Zero like it's water...

Yeah I can back this up 100%

 

When my son was on one of the diets we gave him sugar-free Jello and his seizures went way up. It had to be the aspartame because the seizure frenquency went back to "normal" after we stopped feeding it to him.

 

I don't want to hijack Drumnut's thread too much but we had a bad episode yesterday morning. My son had a drop seizure and went backwards into a wall mirror, which then fell on him and shattered. My wife took him to the hospital and he ended up getting a few stitches in the side of his head.

 

I cleaned up the mess when I got home: the shattered glass on the floor, the washcloth which was pretty much soaked with blood. It was a bad scene but luckily my little guy's better and happy now.

 

Drumnut, do you or have you ever had to wear a helmet? We are going to pick up an "official" hospital one in a few days (we had one fabricated the other week but it takes awhile to make). Any advice on something like that?

 

Thanks. smile.gif

ohmy.gif I'm sorry to hear about your son, it just shows how unpredictable Epilepsy can be and how it strikes whenever it damn well pleases. Don't worry about "hijacking" my thread, I'm just sorry for the reason you're posting here. The title of the thread asks if anyone has them so feel welcome to post anytime you like but like I said, I'm just sad for the reasons you are posting here. Epilepsy is a very hard thing to deal with, especially in you and your son's case where seizures aren't the only thing you have to deal with. I've had a few bloody incidents but nothing like your son has. I've never worn a helmet and my Dr has never said anything to me about wearing one. I guess knowing me, he figures I'm too hard-headed to wear one anyway! I wouldn't know anything about a helmet like that but a hospital or medical supply store might be the best place to start looking I would think. I wonder if a Dr can give you a prescription for something like that to see if your insurance would pick up the cost for it..? I know I need to give up the Coke Zero and I want to find something with some type of "fizz" to it like the carbonation that Coke has. My meds make me feel nauseous and the carbonation settles my stomach. Finding some type of carbonated fruit juice would be something I'd like, it would even be better if it was a natural fruit drink rather than something with artificial flavoring. I know in my case, meds, plenty of rest and eating right are the best things for me. I tried a "regular" Coke the other day and couldn't stand the taste of it. I guess I've just acquired the taste of Coke Zero with Aspartame. I probably don't need the calories either. I live in NV desert country and making sure I stay hydrated is pretty important out here. Maybe I should start drinking bottled water to satisfy my thirst, gee, imagine that...!? I know there are small "flavoring packets" you can add to bottled water but, then again, I'd have to make sure the sweetener is safe to drink. I know I'd miss the carbonation though. I hope your son feels better, and his wounds heal without scars from the broken glass, give him a hug for me.

 

Danny

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QUOTE (Del_Duio @ Jul 7 2010, 05:27 AM)
QUOTE (Drumnut @ Jul 6 2010, 04:56 AM)
I need to stop drinking Coke Zero, it contains Aspartame and it's not supposed to be good for people with neurological conditions, so I've read. I drink Coke Zero like it's water...

Yeah I can back this up 100%

 

When my son was on one of the diets we gave him sugar-free Jello and his seizures went way up. It had to be the aspartame because the seizure frenquency went back to "normal" after we stopped feeding it to him.

 

I don't want to hijack Drumnut's thread too much but we had a bad episode yesterday morning. My son had a drop seizure and went backwards into a wall mirror, which then fell on him and shattered. My wife took him to the hospital and he ended up getting a few stitches in the side of his head.

 

I cleaned up the mess when I got home: the shattered glass on the floor, the washcloth which was pretty much soaked with blood. It was a bad scene but luckily my little guy's better and happy now.

 

Drumnut, do you or have you ever had to wear a helmet? We are going to pick up an "official" hospital one in a few days (we had one fabricated the other week but it takes awhile to make). Any advice on something like that?

 

Thanks. smile.gif

Wow, I'm sorry to hear about your son! I've never worn a helmet and never been told I should so I probably wouldn't be much help there. I'm too hard headed and wouldn't wear one anyway. I've read all kinds of things about artificial sweeteners and and none of them good for neurological conditions. I shouldn't be the one to toot my own horn about artificial sweeteners because I live on them, more like addicted to them. I'm addicted to Coke Zero and that's sweetened with Aspartame. I tried drinking regular Coke this past week and it tasted horrible to me. I love carbonated drinks but need to find something without artificial sweeteners. I'm a smoker too, I'm sure that doesn't help much either. A healthy diet is key to keeping seizures under control and mine is horrible. I think @ my next Dr visit, I'm going to ask for a referral to a dietician. Please don't feel like you're hijacking my thread, I need all the support I can get and hopefully we can bounce ideas and support off of each other. I didn't have any today and made sure I ate right, and took my meds. Do the things that work and don't do the things that don't.

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QUOTE (The_Necromancer_77 @ Jul 19 2010, 12:36 AM)
My cousin just started having some problems with seizures. A while ago he had a brain tumor and things have been pretty screwy ever since they removed it. I feel bad because I haven't talked to him in months sad.gif

Hey Necromancer_77, I'm sorry to hear about your cousin, I'm sure he'd appreciate an e-mail or a letter. I know at least in my case, it's a matter of taking meds, making sure I eat right, and getting plenty of rest to try to keep mine under control. Is your cousin on disability? Working? I'm on disability and hate it. I haven't worked in years other than part time jobs here and there. Not being able to work or drive has made my Epilepsy worse than it needs to be. I feel if I was able to drive to a job every day, I would be doing a hell of a lot better than I am now. Tell your cousin to try to do everything his Dr's/Neuros tell him to do, eat right, stay active, and get plenty of rest.

 

BTW, no seizures for me today, woopie. I hate my Epilepsy and everything that comes with it.

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None today, I hate Epilepsy.

 

Not being able to work or drive is the hardest part of having Epilepsy as far as I'm concerned, driving being the worst. I'm on disability so I might as well be on welfare.

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One Little Victory!

 

I had a Neuro appointment today, my Dr is finally taking me off of one of the drugs I take that I HATE! I told him that if he didn't switch me, I was just going to quit. (we've been fighting about this drug for years) The drug I've hated for years and finally was taken off of is Lamictal. I am currently taking Lamictal and Keppra and hate them both. He gave me a new script for the drug I like and a plan to slowly step down my dosage of Lamictal and titrate up to an effective dose of Dilantin. Dilantin worked well for me before and I was switched to Lamictal by an ER Dr, not a neurologist. Dilantin will be my main drug and my Keppra dosage will eventually be cut in half depending on how well I do on Dilantin. I still have a few more tests for possible surgery and and have appointments for them next week. My goal is to get my seizures under control, get off of disability and drive my ass back and forth to a job every day!!!

 

No seizures today BTW! 653.gif

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QUOTE (Drumnut @ Jul 27 2010, 10:07 PM)
One Little Victory!

I had a Neuro appointment today, my Dr is finally taking me off of one of the drugs I take that I HATE! I told him that if he didn't switch me, I was just going to quit. (we've been fighting about this drug for years) The drug I've hated for years and finally was taken off of is Lamictal. I am currently taking Lamictal and Keppra and hate them both. He gave me a new script for the drug I like and a plan to slowly step down my dosage of Lamictal and titrate up to an effective dose of Dilantin. Dilantin worked well for me before and I was switched to Lamictal by an ER Dr, not a neurologist. Dilantin will be my main drug and my Keppra dosage will eventually be cut in half depending on how well I do on Dilantin. I still have a few more tests for possible surgery and and have appointments for them next week. My goal is to get my seizures under control, get off of disability and drive my ass back and forth to a job every day!!!

No seizures today BTW! 653.gif

Great news Danny! Congrats! applaudit.gif

Keep up with ur journals & stay persistent with what YOU want

not what the DRs want. your the one livin ur life NOT them.

Stay well & strong hun smile.gif

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QUOTE (Drumnut @ Jul 21 2010, 10:42 PM)
QUOTE (The_Necromancer_77 @ Jul 19 2010, 12:36 AM)
My cousin just started having some problems with seizures. A while ago he had a brain tumor and things have been pretty screwy ever since they removed it. I feel bad because I haven't talked to him in months sad.gif

Hey Necromancer_77, I'm sorry to hear about your cousin, I'm sure he'd appreciate an e-mail or a letter. I know at least in my case, it's a matter of taking meds, making sure I eat right, and getting plenty of rest to try to keep mine under control. Is your cousin on disability? Working? I'm on disability and hate it. I haven't worked in years other than part time jobs here and there. Not being able to work or drive has made my Epilepsy worse than it needs to be. I feel if I was able to drive to a job every day, I would be doing a hell of a lot better than I am now. Tell your cousin to try to do everything his Dr's/Neuros tell him to do, eat right, stay active, and get plenty of rest.

 

BTW, no seizures for me today, woopie. I hate my Epilepsy and everything that comes with it.

My cousin's only in High School. I'm very proud of him because he managed to get passing grades after being out of class a good deal of time after he had surgery. I just learned this morning his parents are getting a divorce sad.gif I plan on sending him a letter sometime soon, though.

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QUOTE (The_Necromancer_77 @ Jul 30 2010, 01:19 AM)
QUOTE (Drumnut @ Jul 21 2010, 10:42 PM)
QUOTE (The_Necromancer_77 @ Jul 19 2010, 12:36 AM)
My cousin just started having some problems with seizures. A while ago he had a brain tumor and things have been pretty screwy ever since they removed it. I feel bad because I haven't talked to him in months sad.gif

Hey Necromancer_77, I'm sorry to hear about your cousin, I'm sure he'd appreciate an e-mail or a letter. I know at least in my case, it's a matter of taking meds, making sure I eat right, and getting plenty of rest to try to keep mine under control. Is your cousin on disability? Working? I'm on disability and hate it. I haven't worked in years other than part time jobs here and there. Not being able to work or drive has made my Epilepsy worse than it needs to be. I feel if I was able to drive to a job every day, I would be doing a hell of a lot better than I am now. Tell your cousin to try to do everything his Dr's/Neuros tell him to do, eat right, stay active, and get plenty of rest.

 

BTW, no seizures for me today, woopie. I hate my Epilepsy and everything that comes with it.

My cousin's only in High School. I'm very proud of him because he managed to get passing grades after being out of class a good deal of time after he had surgery. I just learned this morning his parents are getting a divorce sad.gif I plan on sending him a letter sometime soon, though.

Wow, I'm sorry to hear about your cousin... sad.gif I'm still waiting to see if surgery is an option.

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