New to site

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

stein.dan

New
Messages
6
Reaction score
0
Points
0
Hi my name is Dan. I have had epilepsy since I was six months old. I am now in my forties. I have been on various medications through the years. I was fortunate to go through all of my teen years seizure free. This enabled me to get a drivers license and hold down some employment. But in my twenties seizures came back with a vengeance. My form of epileptic seizures are complex partial seizures.
I am currently on Keppra Xr and Zonegran. They seem to work for the most part. But with no car and a joke of a Port Authority Transit, options are scarce. I would love to find a place where I can walk to everything and get around. This Obama care is making a joke of my medicines. I cannot afford to be on generic or it increases seizure possibilities. The pharmacies are trying to ram it down my throat. They have made name brands so high I would need 3 jobs to afford them. I would love to hear from people in similar situations.

Sincerely,

Dan
 
Sorry to hear about your seizures. You'll find more empathy here than anywhere else (so I've discovered since joining this site).

However; what has Obamacare got to do with the price of your medicines? I've found that my medicines (and healthcare in general) have pretty much increased in cost every year for the past 20+ years. Is that Obama's fault as well?

If you MUST be on non-generics, have your doctor indicate this on the Rx. Then, the pharmacy and the insurance company have no choice but to fill it that way. If you can't afford it, that too is unfortunate. However; again, how is that Obama's fault or more importantly how is that anyone's responsibility but your own? Should every healthy person pay more so that you can pay less? Ultimately, that is what Obamacare is all about...sharing the cost by distributing it among everyone.

You may have to do without all those things that most spoiled Americans have in order to be able to afford to pay for your own healthcare. Cable, big-screen televisions, computers, internet access, etc., etc. are not necessary to survive. But something tells me you're probably not trimming the fat on THOSE items prior to immediately complaining about the rising cost of healthcare and speaking like you're entitled to it being inexpensive simply because you can't afford it.

But, I do feel for you.
 
However; what has Obamacare got to do with the price of your medicines?

Where the hell have you been the last few years? Obamacare has a LOT to do with the INCREASE in the prices of meds for those with chronic illnesses. Yes, name brand AEDs are expensive, but some of us DO require it in order to stay alive!! And with the Obamacare plan now in place, for some, paying that price is not possible.

I've found that my medicines (and healthcare in general) have pretty much increased in cost every year for the past 20+ years. Is that Obama's fault as well?

Obama is the one who wanted everyone to have some kind of insurance available, but now that it is available, the price of meds and health care has skyrocketed so now the drug coverage is inadequate, nearly impossible to afford.

If you MUST be on non-generics, have your doctor indicate this on the Rx. Then, the pharmacy and the insurance company have no choice but to fill it that way. If you can't afford it, that too is unfortunate. However; again, how is that Obama's fault or more importantly how is that anyone's responsibility but your own?

Well, read here and figure out how this is Obama's fault why some cannot afford medication:

http://www.newsmax.com/Newsfront/drugs-obamacare-insurers-loophole/2013/12/10/id/540953
Obamacare Drug Plans Will be More Costly for Chronically Ill

The list of Obamacare problems keeps growing, this time with news that many insurance plans being offered provide inadequate drug coverage for people with expensive or chronic conditions.

By either not providing coverage for certain drugs or requiring patients to pay huge co-pays — up to 50 percent in some cases — many insurers participating in the Obamacare exchanges are in essence pricing people out of treatment, The Washington Post reports.

So while the president touts his signature plan for covering everyone, regardless of their condition, treating that condition could be extremely costly for many chronically ill Americans.

Typically, a plan limits out-of-pocket expenses for its insured, but a loophole in Obamacare is that only drugs listed on a plan’s formulary are included, according to Forbes.

While technically these patients will have health insurance, using it may be cost prohibitive because some insurance plans have been structured to penalize the chronically ill, according to some healthcare advocates.

“The easiest way [for insurers] to identify a core group of people that is going to cost you a lot of money is to look at the medicines they need and the easiest way to make your plan less appealing is to put limitations on these products,” Marc Boutin, executive vice president of the National Health Council, told the Post.

But something tells me you're probably not trimming the fat on THOSE items prior to immediately complaining about the rising cost of healthcare and speaking like you're entitled to it being inexpensive simply because you can't afford it.

Something tells me you are ill informed and have absolutely no compassion. Thank god your not in the health care industry!
 
Sorry to hear about your seizures. You'll find more empathy here than anywhere else (so I've discovered since joining this site)

the beginning and end of your thread is opposite to what you said in between. show any indication of empathy? my jaw doesn't drop much on here but wow it sure did reading your post. VERY non-empathetic pc, and not only out of line but also completely unjustified.
we are allowed to give our personal opinions on here, as long as we're not ignorant to each other. as your response was first to our new member i hope you realize how bad you made this site look. NOT THE CASE. best and most supportive epilepsy site there is, and if you want to be a respected member i recommend not talking to others like that, esp. if it's got no merit.
he made ONE comment in relation to obama. and he's allowed! how dare you insinuate he's experiencing this simply b/c he won't give up the big ticket items in life! you don't even know him. before surgery my cost of 3 meds was 600 dollars a month... 400 being the one that wasn't generic, vimpat. there is NO WAY i could afford that without my significant other's company with full coverage. and you'd say that's actually b/c i won't let go of the finer things in life. bullshit, i don't have any!
your behaviour in this thread is hypocritical of your own words, SO not needed here. and to you dan... please ignore it. for those of us that care (whether we know you or not) we answer to HELP, not insult.
 
Last edited:
I just get tired of everyone blaming everything on Obama. That's my opinion, and I'm entitled to it.
 
Obama is the one who wanted everyone to have some kind of insurance available, but now that it is available, the price of meds and health care has skyrocketed so now the drug coverage is inadequate, nearly impossible to afford.

I'm sorry, but that is only partially true. The price of medicine has "skyrocketed" every year for the last 20+ years; like I said in my original post. What IS true however is that if you can't afford to pay for your coverage/medicine the government is willing to help you. I know this not because of some article I've read, but because I know people who just got coverage that is unbelievably cheaper than they were paying last year.

Again, it sucks that the cost of medicine keeps going up. It has for me too. Guess what? It'll continue to go up for the rest of our lives. That doesn't mean that I have no empathy or compassion.

If the OP wants to point the finger at someone, point it at the drug companies who want to pay their executives millions of dollars a year while you struggle to pay for the medicines that will help you. THEY have no empathy. THEY have no compassion.
 
Hi Dan,

Welcome to the forum, you will actually find some great people on here.
It sounds like our stories are similar, I had my 1st seizure at 9 months & had tonic clonic seizures until I was 3. I was seizure free all through my school years & teens, I went 21 years seizure free until my seizures returned in 2002 when I was 24.
After my seizures returned I mainly took simple/complex partials, my neurologist tried me on 5 medications but none helped control the partials so in March 2011 I had surgery & my seizures have been under control since.

I am not from America so the only thing I know about the American health system is from what I read on here & what my American friend tells me but from what I have read you have to have a good income or good insurance to be able to afford medical treatment/medication which sounds really tough.

This may be of interest to you - http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/
 
Last edited:
oh my god! this is dan's - a new member's thread! - looking for advice in relation to HIS situation, not for a US political debate. pc make your own thread re: obama and healthcare if you want, but don't change one's thread to a different topic and specifically use it as an opportunity to greatly insult!
yes you are entitled to your own opinon but not to make assumption and respond in a way that is very embarrassing to the rest of us. not saying you can't bitch on here, but if you are going to be ill-informed and have no compassion you've come to the wrong place. please stop.

dan, again, pls ignore the disrespectful comments.
 
Hi my name is Dan. I have had epilepsy since I was six months old. I am now in my forties. I have been on various medications through the years. I was fortunate to go through all of my teen years seizure free. This enabled me to get a drivers license and hold down some employment. But in my twenties seizures came back with a vengeance.

welcome dan,
not uncommon for seizures to kick back for awhile then return like a storm. can be life-changing for many overnight. loss of license a large portion of us share, the loss of indpendance makes us feel like five-year-olds and can be quite stressful and cause depression.
HUGS to you for dealing with complex partials, IMHO it's one of the more harsh to experience, including the risk of injury. mine are simples and grand mals, but did have a few complex in the seizure unit, how disorienting :(

re: meds. our situation isn't too similar but if it is statute in the US for a pharmacist to have to give you specifically what your doctor says, "BRAND-ONLY" that's good. maybe make an appt and see what your doc says, for that to be the case would be so great!!!!
 
Last edited:
pc make your own thread re: obama and healthcare if you want.
Actually, as a moderator, I'd ask folks not to open up that can of worms. Certain topics (such as a religion and politics) can provoke strong (and divisive) opinions on all sides. The CWE dinner party is a lively place, but the aim is to keep it cordial, respectful, and supportive.

Now, where were we?... Dan, welcome to CWE!

Check out the link CQ provided above, you may find it helpful in dealing with medication costs. I know it can be tough to be trapped with few non-automobile transportation options. When I started having seizures, I made the decision to move to an area where I could walk to supermarkets and drugstores, and have access to public transit as well. I also started working at home. I realize that not everyone has these options; I hope you can find a way to make things work or move.

While I was suspicious of generic anti-seizure meds, I had no problem making the switch myself, and have remained seizure-free on lamotrigine (generic lamictal). Again, I realize this isn't be the case for everyone, but just wanted to let you know that generics aren't unilaterally problematic.

Best,
Nakamova
 
I'm sorry, but that is only partially true. The price of medicine has "skyrocketed" every year for the last 20+ years; like I said in my original post. What IS true however is that if you can't afford to pay for your coverage/medicine the government is willing to help you. I know this not because of some article I've read, but because I know people who just got coverage that is unbelievably cheaper than they were paying last year.

To a certain degree. The price of life has skyrocketed! The gov't will also rip you off. Do the people you mention have "chronic illnesses" like I had mentioned before? I know this because I have TWO chronic illness (E and Diabetes) and have to take meds and check my glucose levels 5 times a day in addition to giving my self insulin shots 4 times a day. I got my meds cheaper by changing pharmacies.

And to Dan, in addition to the website that CQ posted, here are others that are willing to help you out with you Rx:

http://www.freemedicineprogram.com/

http://www.pparx.org/

http://www.rxhope.com/
 
Last edited:
oh my god! this is dan's - a new member's thread! - looking for advice in relation to HIS situation, not for a US political debate. pc make your own thread re: obama and healthcare if you want, but don't change one's thread to a different topic and specifically use it as an opportunity to greatly insult!
yes you are entitled to your own opinon but not to make assumption and respond in a way that is very embarrassing to the rest of us. not saying you can't bitch on here, but if you are going to be ill-informed and have no compassion you've come to the wrong place. please stop.

dan, again, pls ignore the disrespectful comments.

I don't think I've made any disrespectful comments to Dan. If I have, I apologize. gtowngirl, settle down.
 
The price of life has skyrocketed!

I'd agree with this. Dan I feel it's important that I mention again how sorry I am that you're having trouble affording your medicine, as not doing so evidently makes me a terrible person with no compassion.

Despite my first response to your initial post, just because I don't agree with several other people on here about the price of medicine, that doesn't mean I don't care about your problem. I most certainly do, as we are all dealing with the same issue.
 
Please folks, no more digs at one another and no more political discussions. I mean it.
 
Hi Dan,
Welcome to CWE.

My daughters experiences with medication was not a positive one (she tried 4), so we made the decision to try alternatives. Actually it was more expensive than her prescriptions, however the meds increased her seizures and added new ones to the mix. Not a good route for us, nor a time that is pleasant to remember. However I am blessed that I went through it so that I was forced to look at a different holistic mindset.
I am on a insurance plan now that I would be paying for all of her meds out of pocket until I reach $6000/yr deductible, so I am glad that she is able to remain med free. It is a scary time and I feel for your frustration in regards to healthcare. It will get worse before it gets better, so hang on for the ride.

As I went through this extremely dark time with my teen, I had to focus on ways to be proactive and not let the grip of conventional medical practices back me into a corner. I am not sure what that means for you, but I know that staying positive helps the brain not to spiral into a cycle of despair where there is no way out - or so we think.
For me focusing on new ideas, reading new approaches, helped me in my quality of life as well.

I don't know if I am making any sense here, but let me know what you think.
 
While I was suspicious of generic anti-seizure meds, I had no problem making the switch myself, and have remained seizure-free on lamotrigine (generic lamictal). Again, I realize this isn't be the case for everyone, but just wanted to let you know that generics aren't unilaterally problematic.

Best,
Nakamova

I am on 150 mg of genertic lamictal. I have insurance but if I didn't the cost for the generic is a whopping $668. per month.

There is help available from the drug manufactures for people that can't afford medications.
 
Hi my name is Dan. I have had epilepsy since I was six months old. I am now in my forties. I have been on various medications through the years. I was fortunate to go through all of my teen years seizure free. This enabled me to get a drivers license and hold down some employment. But in my twenties seizures came back with a vengeance. My form of epileptic seizures are complex partial seizures.
I am currently on Keppra Xr and Zonegran. They seem to work for the most part. But with no car and a joke of a Port Authority Transit, options are scarce. I would love to find a place where I can walk to everything and get around. This Obama care is making a joke of my medicines. I cannot afford to be on generic or it increases seizure possibilities. The pharmacies are trying to ram it down my throat. They have made name brands so high I would need 3 jobs to afford them. I would love to hear from people in similar situations.

Sincerely,

Dan
Hi Dan. Welcome to the group. Usually everyone is very respectiful of everyone. Lots of knowledge here too. There is help available for people directly from the drug manufacturers.

http://www.aesnet.org/files/dmfile/PatientAssistanceProgramsFINAL2010.pdf
https://www.rxhope.com/
http://www.needymeds.org/
 
I am on 150 mg of genertic lamictal. I have insurance but if I didn't the cost for the generic is a whopping $668. per month.

There is help available from the drug manufactures for people that can't afford medications.

Holy that's crazy!! We had my daughters filled last month, and it was about $80 for the same here is Canada (and i have insurance that covers 80% of that ). I'm always shocked at how much more expensive meds are in the US than here, when everything else seems so much cheaper there :(
 
Holy that's crazy!! We had my daughters filled last month, and it was about $80 for the same here is Canada (and i have insurance that covers 80% of that ). I'm always shocked at how much more expensive meds are in the US than here, when everything else seems so much cheaper there :(

I was shocked too! I got 4 prescriptions, all were generic but one at hey cost over $1200.00. The genertic Lamictal was the most expensive of the 4.
 
Back
Top Bottom