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Epilepsy, seizures...


Drumnut
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Just received this in an e-mail from disability.gov

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Medicare beneficiaries will soon receive information in the mail about the immediate benefits they may see from the new the Affordable Care Act. The first benefit that several million Medicare beneficiaries will receive is a one-time check for $250, if they enter the Part D donut hole and are not eligible for Medicare Extra Help. The donut hole, or coverage gap, is the period in the prescription drug benefit in which a beneficiary pays 100 percent of the cost of their drugs until they hit the catastrophic coverage. Next year, all beneficiaries who enter the gap will get a 50 percent discount for covered brand name Part D drugs. Also beginning next year, Medicare beneficiaries will get preventive care services like colorectal cancer screening and mammograms without cost-sharing, in addition to an annual wellness visit. A fact sheet about Medicare and the new health care  law is available in English and Spanish.

Oh great, I'll reach the "donut hole" in my part D coverage within 3 months. A "one-time check" for $250 will pay for less than a month of the drugs I take for Epilepsy. Thanks Barry and Democrats, I hope Republicans run on Repeal Barry-care ASAP. People have asked me what difference is there from Barry-care and the Medicare I receive now and how will it affect you? There it is in a donut hole, right there, $250.00 does absolutely nothing for me, repeal or de-fund Barry-care ASAP!

 

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I have 'petit mal' epilepsy. I don't have seizures I just have what the call absenses. I don't like that word, though. I don't feel absent! It's just a strange feeling as though my whole perception changes and I can't really think or talk for a bit.

 

You know what, though? I seriously recommend to anyone with epilepsy that they try consistant meditation. I haven't been meditating lately because of depression related issues (long story) but when I used to meditate twice a day I was completely free from any symptoms of epilepsy for years.

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QUOTE (onslo @ Jun 3 2010, 05:22 AM)
I have 'petit mal' epilepsy. I don't have seizures I just have what the call absenses. I don't like that word, though. I don't feel absent! It's just a strange feeling as though my whole perception changes and I can't really think or talk for a bit.

You know what, though? I seriously recommend to anyone with epilepsy that they try consistant meditation. I haven't been meditating lately because of depression related issues (long story) but when I used to meditate twice a day I was completely free from any symptoms of epilepsy for years.

I have Gran Mal seizures and when I do have them, they're big, long, and painful. I often have headaches and feel like I've been beaten. Sometimes the pain lasts for 2 or 3 days at the worst. I get Migraine headaches all the time. I take 2 different drugs for my Epilepsy, Lamictal and Keppra, neither of them work well for me. I was taking Dilantin, it worked for me, I didn't have seizures or headaches or bad side-effects. I was switched by another Dr to them from Dilantin and now, my current Dr won't let me switch back to it. My Dr's just keep throwing drugs at me rather than let me try one I liked again. I hate having Epilepsy and the sooner it ends my life, the better.

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QUOTE (Drumnut @ Jun 4 2010, 04:44 AM)
QUOTE (onslo @ Jun 3 2010, 05:22 AM)
I have 'petit mal' epilepsy. I don't have seizures I just have what the call absenses. I don't like that word, though. I don't feel absent! It's just a strange feeling as though my whole perception changes and I can't really think or talk for a bit.

You know what, though? I seriously recommend to anyone with epilepsy that they try consistant meditation. I haven't been meditating lately because of depression related issues (long story) but when I used to meditate twice a day I was completely free from any symptoms of epilepsy for years.

I have Gran Mal seizures and when I do have them, they're big, long, and painful. I often have headaches and feel like I've been beaten. Sometimes the pain lasts for 2 or 3 days at the worst. I get Migraine headaches all the time. I take 2 different drugs for my Epilepsy, Lamictal and Keppra, neither of them work well for me. I was taking Dilantin, it worked for me, I didn't have seizures or headaches or bad side-effects. I was switched by another Dr to them from Dilantin and now, my current Dr won't let me switch back to it. My Dr's just keep throwing drugs at me rather than let me try one I liked again. I hate having Epilepsy and the sooner it ends my life, the better.

:S

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QUOTE (onslo @ Jun 4 2010, 04:25 AM)
QUOTE (Drumnut @ Jun 4 2010, 04:44 AM)
QUOTE (onslo @ Jun 3 2010, 05:22 AM)
I have 'petit mal' epilepsy. I don't have seizures I just have what the call absenses. I don't like that word, though. I don't feel absent! It's just a strange feeling as though my whole perception changes and I can't really think or talk for a bit.

You know what, though? I seriously recommend to anyone with epilepsy that they try consistant meditation. I haven't been meditating lately because of depression related issues (long story) but when I used to meditate twice a day I was completely free from any symptoms of epilepsy for years.

I have Gran Mal seizures and when I do have them, they're big, long, and painful. I often have headaches and feel like I've been beaten. Sometimes the pain lasts for 2 or 3 days at the worst. I get Migraine headaches all the time. I take 2 different drugs for my Epilepsy, Lamictal and Keppra, neither of them work well for me. I was taking Dilantin, it worked for me, I didn't have seizures or headaches or bad side-effects. I was switched by another Dr to them from Dilantin and now, my current Dr won't let me switch back to it. My Dr's just keep throwing drugs at me rather than let me try one I liked again. I hate having Epilepsy and the sooner it ends my life, the better.

:S

Sorry, a little harsh on myself there, those are just feelings I sometimes get on bad migraine headache days. When I posted that, it just happened to be "one of those" days. I've never seen myself have a seizure, not even when I had a video EEG and wound up having 3 good one's making the video EEG a success. I knew a girl who had absence seizures. She did lose time and space for a while but it was never like the Gran Mal seizures I have seen on videos. She called hers, "hurry up and wait moments," it's still scary to witness though. She took meds for them but we both usually had the same "excuses" we could come up with for having them, forgetting to take meds, not eating right, or not getting enough sleep. I'm trying my damnedest these days to make sure I take better care of myself, take my meds at the same time every day, eating right, and getting plenty of rest when I can. My Dr's always tell me those are the most important "rules" to stick to. Do the things that work and don't do the things that don't. I do smoke cigarettes but I don't drink or smoke weed so I don't have to ask myself later if it was the weed or drinking that caused me to have a seizure, I just eliminate those factors.

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Hey Drumnut!

I'm new to the forum and just noticed this thread...sorry to hear your struggles bro...I have had epilepsy for around 13 years now after hitting my head while I was in the Air Force. I have Grand Mal seizures too, which absolutely suck. They're painful and when they start I pray to pass out quickly so I don't feel the excruciating pain anymore. The after effects are really bad too...body hurts everywhere, bad headaches, and I've almost bit my tongue in two a few times.

Anyway, I have been able to control them with meds..Tegretol XR works for me...I've tried Keppra with no luck....I do however have auras quite a bit, this is where it feels like a seizure is coming on then it stops, sometimes refered to as a mini seizure.

 

I hope you get a hold of your episodes at some point. They're coming out with new drugs all the time.

 

Stay strong brother!

 

Dan

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QUOTE (azwink @ Jun 22 2010, 10:58 PM)
Hey Drumnut!
I'm new to the forum and just noticed this thread...sorry to hear your struggles bro...I have had epilepsy for around 13 years now after hitting my head while I was in the Air Force. I have Grand Mal seizures too, which absolutely suck. They're painful and when they start I pray to pass out quickly so I don't feel the excruciating pain anymore. The after effects are really bad too...body hurts everywhere, bad headaches, and I've almost bit my tongue in two a few times.
Anyway, I have been able to control them with meds..Tegretol XR works for me...I've tried Keppra with no luck....I do however have auras quite a bit, this is where it feels like a seizure is coming on then it stops, sometimes refered to as a mini seizure.

I hope you get a hold of your episodes at some point. They're coming out with new drugs all the time.

Stay strong brother!

Dan

Welcome Dan, I go by Danny. I've been having seizures for many years and they ended any chances of me getting into the military a long time ago. I wanted to go into the Air Force but, at the time, my Epilepsy would have shown up in my medical records and I never would have even passed the physical. I too have Gran Mal seizures and sometimes so bad that I sleep for days after a big one. I'm currently taking Lamictal and Keppra and hate them both. I want to switch back to Dilantin but my Dr and family seem to think the drugs I'm on are "working" but they're not "working" well enough for me. I don't need to pray to pass out quickly, mine hit fast, hard, and painful so I understand what you're going through there. I'm on disability and can't work, I would love to be able to work and drive. Are you on disability? Disability isn't much and I HATE trying to get around without being able to drive. You stay strong too brother, hopefully we can give each other support here and try to get our damn seizures under control. I keep it simple, eat right, sleep right, and make sure I take my drugs at the same time every day to try and keep mine under control. Even if I do all the right things, I still have them. Keep in touch brother, I unfortunately use this thread as sort of a "seizure diary." I'm getting better control of them now that I live in a warmer part of the country, I hate being cold! Las Vegas, NV is a hell of a lot warmer than Erie, Pennsylvania where I had been living for the past few years! Are you on disability?

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I feel for you... I really do. Stay strong, man. Keep fighting. It's nice to see a lot of "none today" posts. hug2.gif

 

I know from personal experience how hard it is living with a chronic condition that is hard to control and interferes with your daily life. I can understand medicine and doctors that are very little help. Stay strong and keep positive. I'll pray for you.

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QUOTE (GeddyLeefan2112 @ Jun 23 2010, 11:50 PM)
I feel for you... I really do. Stay strong, man. Keep fighting. It's nice to see a lot of "none today" posts.  hug2.gif

I know from personal experience how hard it is living with a chronic condition that is hard to control and interferes with your daily life. I can understand medicine and doctors that are very little help. Stay strong and keep positive. I'll pray for you.

Thanks, I appreciate it. My Epilepsy is something I struggle with every day. Ever since my Epilepsy began, it's completely changed my life. I can't drive, I can't work, and am now on disability. I'd give just about anything to drive to a job every day. My friends and family know that bitching to me about their job or their car is a bad idea, I'd switch places with them in a heartbeat. I do everything my damn Dr's tell me but I still have seizures. They're not the one's living my life with Epilepsy, they just know what they've learned to treat it, Dr's are a pain in the neck sometimes. I just do the things that work and avoid the things that don't.

 

No seizures today BTW! 653.gif

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