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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.

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What a quick, patient and pleasant reply. I have high hopes for this forum. I saw others but wasn't impressed to join any. As a matter of fact, I don't belong to ANY other forums, chat rooms, etc., not even Facebook! lol! (that's about the only abbreviation I know, I am NOT computer lingo literate!)
Thanks so much for the info on how to make a post. My 30 year old son has just started having very different seizures and episodes of night terrors, sleepwalking, anxiety and hallucinations, after 15 years of the same type of grand and petit mal seizures. He was just admitted to the hospital and I am at my wits end. Didn't expect this after all this time, so I can use the hospitality of this friendly seeming and informative forum.
Again, thank you for your help.:bigsmile:
You're more then welcome.
Sometimes when you are new to the world of forums it can be pretty daunting at 1st. You will meet a variety of different people - not only people who have epilepsy but also carers, family members, partners & friends & we all have different stories to share.
 
Horrified!

I'll admit I haven't read this whole thread, but the first page was enough for me to be utterly horrified that there are people out there who have to choose between paying for food and paying for medication. And food wins.
I understand both are essential, but there needs to be global programs for people who NEED medication. It cost me at most about $70 for 3 months worth of my epilepsy medication. When I was on my own (single parent) it was $12 for 3 months worth of my epi meds. Why is this not universal? This is beyond wrong. I'm so upset for those of you in this horrible situation. If there's anything I can do to help, please let me know.
Xx Tracy.
 
It does seem very unfair. However, it's absolutely necessary that we regularly visit our doctor for health care on a regular basis and practice a healthy lifestyle. I feel very strongly in favor of taking brand name medications because they DO make a difference between having no seizures or having a breakthrough seizure. It's a very fine line for me.
 
It's very hard for me to afford my meds, if the government hospice doesn't have them, one of my meds alone cost $65 (I'm on 4 different types). For some reason, it's not easy to find in the Bahamas. I'm only given 1 month supply at a time so getting my AEDs alone is stressful. ☹☹
 
I just recently got back into this forum again, and today found this thread. Hope it's ok to add to it; it's rather old. I'm on topiramate; I had to switch to generic at the end of 2010 because I could no longer afford the brand name on the high deductible health care plan I'm on. It runs about $1500.00/month until I meet my $5000.00 deductible, then it's covered at 100%. Problem is, who the heck can afford $1500.00/month? I've tried several prescription assistance programs, including the company that makes the drug, and I either make too much money, or they won't help because I carry private insurance. My doctor doesn't get samples of Topamax and, in fact, told me it would just be better if I didn't have insurance because then I'd get it free through the clinic. *sigh*

Anybody get assistance -and- have insurance?
 
If generics were exactly the same as brand name drugs, this would not be an issue. There has to be a fast, hard and strict rule for this to happen to medications that are critically monitored like those for epilepsy.
It's downright outragious. There may be some lenience for non-epilepsy drugs, but the original manufacturer should hand over the whole formula, including fillers.
 
No this is the way medicare part D (prescription coverage works here) I can take gens for all my meds except for Keppra XR, that is slightly discounted to $215/month with a doctor's exemption. I jumped through the hoops, just NO medicare part D covers this drug. I get seizures on the generic of this medication, all the rest are $7. I am on disability for E. Paying this ammount means I am trying to live on $700/month. I am deducted out of my check for medical insurance, and hospital insurance. I live in California you cannot find a room for rent here for that amount, let alone eat, doctor's appts, transportation. Last year net I was making net $924/month because my prescription insurance covered it, with what has happened to US healthcare now, the story that is never told: I am having more strikes placed upon me than should be allowed. I was given a cost of living wage, but the insurance cost that does not cover Keppra went up in price, so now I make less than last year plus I have to take Keppra, I found a lump in my breast, my hormones do not know which end is up and I am having to try to survive on $200+ less than I did last year is that evening out the playing field? I was climbing up hill to begin with, and I continue on...life is a gift, without my E I would not be me. ;)
 
No this is the way medicare part D (prescription coverage works here) I can take gens for all my meds except for Keppra XR, that is slightly discounted to $215/month with a doctor's exemption. I jumped through the hoops, just NO medicare part D covers this drug. I get seizures on the generic of this medication, all the rest are $7. I am on disability for E. Paying this ammount means I am trying to live on $700/month. I am deducted out of my check for medical insurance, and hospital insurance. I live in California you cannot find a room for rent here for that amount, let alone eat, doctor's appts, transportation. Last year net I was making net $924/month because my prescription insurance covered it, with what has happened to US healthcare now, the story that is never told: I am having more strikes placed upon me than should be allowed. I was given a cost of living wage, but the insurance cost that does not cover Keppra went up in price, so now I make less than last year plus I have to take Keppra, I found a lump in my breast, my hormones do not know which end is up and I am having to try to survive on $200+ less than I did last year is that evening out the playing field? I was climbing up hill to begin with, and I continue on...life is a gift, without my E I would not be me. ;)
I think you can make more at McDonald's.
Luckily my work pays for my Atrociously high insurance bill(470)
I also live in california
 
No this is the way medicare part D (prescription coverage works here) I can take gens for all my meds except for Keppra XR, that is slightly discounted to $215/month with a doctor's exemption. I jumped through the hoops, just NO medicare part D covers this drug. I get seizures on the generic of this medication, all the rest are $7. I am on disability for E. Paying this ammount means I am trying to live on $700/month. I am deducted out of my check for medical insurance, and hospital insurance. I live in California you cannot find a room for rent here for that amount, let alone eat, doctor's appts, transportation. Last year net I was making net $924/month because my prescription insurance covered it, with what has happened to US healthcare now, the story that is never told: I am having more strikes placed upon me than should be allowed. I was given a cost of living wage, but the insurance cost that does not cover Keppra went up in price, so now I make less than last year plus I have to take Keppra, I found a lump in my breast, my hormones do not know which end is up and I am having to try to survive on $200+ less than I did last year is that evening out the playing field? I was climbing up hill to begin with, and I continue on...life is a gift, without my E I would not be me. ;)

Something that was just discovered with my prescription insurance (Care Mark) is the fact being Blue Cross Blue Shield who has Care Mark runs all of the CVS pharmacies. So with that being said, you may want to consider where you are purchasing your medications at if you can get under this type of medication as it can actually do you benefit. I refuse to use CVS as I do not find any benefit by them and I don't like the pharmacy itself. I've always preferred to use Walgreen's pharmacy for years as the pharmacists are persons whom I have known for many years and have worked with them for many years (since my first surgery) and documentation travels upon request.

At any rate, something I can recall reading in another post was CVS will give a discount with medication and now I know why. Just a thought.:twocents:
 
To anyone in Oregon: if you're uninsured/under-insured you can get on the Oregon Prescription Drug Plan... just a head's up to anyone on here who lives in this state. It's not very well known. I only found out about it a few years ago at a job-seekers networking group I used to go to. Before I knew about that, I found out that Fred Meyer's pharmacy price-matches to Costco and I was doing that for awhile.

(Sorry if this has already been mentioned, I don't have time to go back and read all five pages... and I have kind of a short attention span!)
 
I didn't read all of the comments so if someone already said this I'm really sorry. I'm in the US and I don't have insurance. I recently had to quit my job because of the way my aniexty was affecting me at work as well as my seizures. But if you have a Costco in your area, or even you can order it online they are very cheap with their medicine costs. I only pay 20$ a month for now my keppra, but I paid less then 20$ for my topamax.
 
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