Lamictal and don't know what I am going to do!

[Georgiagirl88]

I just do not know what to do?!!!??!
I mentioned the bit about the the insurance changing their coverage and instead of my $20.00 copay that I have always paid..I will now apparently need to pay $100.00. (thought it was 85.00, but I was wrong)!!! Because there is now a generic..they will not pay. And from everything I have read
according to surverys, Drs., patients, studies, etc..the generic is not a good idea for the seizures. 2/3 of patients reported having breakthrough seizures and increase in severity/frequency. My Dr. called and he is more than willing to write a letter etc. I am just so... at my wits end. Insurance can be such a run around!! So basically they would rather risk a patient having seizures and more medical bills possibly than cover it. They said it was because of the plan my husband chose with his Company ( a major corporation) and we should opt for the other plan. There is NO other plan. We have BCBS. Ugh..he called and got the same screwed up answers and no solutions. What a pain in the butt..I just needed to vent for a bit!!! Today is not a great day..so I will move on from here and hope tomorrow looks up. Hopefully I will also find an answer.
Michelle

[haird18]

Michelle,

All these different companies seem to want to suck every last penny we have even though they know there are programs out there to help us, but they they rather turn our backs on us and jack up the rates of our meds. instead. If I were you Michelle go to your state legislator and get help!
David

[RobinN]

I do believe that the insurance companies are aware that some patients are willing to pay out of pocket for their care and medication when pushed into a corner.
So they build rooms with multiple corners and start pushing. We the insured are the losers in the game.

[seizures4ever]

I do believe that the insurance companies are aware that some patients are willing to pay out of pocket for their care and medication when pushed into a corner.
So they build rooms with multiple corners and start pushing. We the insured are the losers in the game.

Well stated Robin. I'm in the corner.

Michelle, I'm so sorry about your insurance. I have the same problem too. I now take the generic because I got nowhere with our insurance company.
So you go ahead and vent my dear, you're letting off steam for the both of us!

Strange but true side note: I worked at a pharmacy for awhile. At the time, several insurance companies were paying for Viagra but not birth control pills! There were a lot of very happy men with very irritated wives! Insurance companies have never made sense to me.

Take care. Hang in there. -Julie

[Nancy]

Michelle - when Tricare did that about Trileptal (and every single med on the market) my neurologist told us to write a letter (a letter she ....(~blush~word is gone)....she told us what to say and she endorsed )to them. When Tricare refused to give me Tricare she wrote to them and asked for it .... It took a couple of expensive months but finally I'm getting it instead of the genetic.
Good luck!!

[Cinnabar]

I just do not know what to do?!!!??!
I mentioned the bit about the the insurance changing their coverage and instead of my $20.00 copay that I have always paid..I will now apparently need to pay $100.00. (thought it was 85.00, but I was wrong)!!! Because there is now a generic..they will not pay. And from everything I have read
according to surverys, Drs., patients, studies, etc..the generic is not a good idea for the seizures. 2/3 of patients reported having breakthrough seizures and increase in severity/frequency. My Dr. called and he is more than willing to write a letter etc. I am just so... at my wits end. Insurance can be such a run around!! So basically they would rather risk a patient having seizures and more medical bills possibly than cover it. They said it was because of the plan my husband chose with his Company ( a major corporation) and we should opt for the other plan. There is NO other plan. We have BCBS. Ugh..he called and got the same screwed up answers and no solutions. What a pain in the butt..I just needed to vent for a bit!!! Today is not a great day..so I will move on from here and hope tomorrow looks up. Hopefully I will also find an answer.
Michelle

Michelle, I know what your going through and how scarey it is. Lamictal is my "double duty" med...for Epilespy and Bi-Polar.

I just received notification from Medicare that starting Jan 1st I will no longer qualify for the help I'm receiving now. On my own, costs for my Medicare prescriptions (I'm on five meds) will increase considerably. Lamictal costs $400 a month, if I'm understanding correctly. In any case it's an exhorbinant amount of money.

Now, my Medicade overage is $415.00 a month which I can't afford to pay into. It's a little less than half of my SSD which I've been on for years due to of a very "over the top" case of Bi-Polar which I've been stabilized for nearly a decade because of Lamictal "and" the other four meds which have made for the perfect "medication cocktail"

The system has NO mercy. I have a thicket of forms to fill out and still there's no gauranty that my costs will remain the same or that costs will be available at all.

Having no assistance, I'll be going back to the way I was. Insanely funny but crashing, eventually...on the road to death. No kidding, here. And now with Epilepsy I can't imagine how it will dance with Bi-Polar. I'll fill out all these forms and write to my congressman if I'm denied. But that might be a waisted effort.

I am tenatious, though. The only way I got SSD was to gather and fill out plethora of forms, and quickly. When dealing with administrator's over the phone they just assumed I was a Case Manager, so I thought what the hell?!
Everytime, I had to call a step up the ladder, I'd say "Im calling on behalf of my client, Laurie Palmer". Of course, being armed with information and a professional voice made me sound all the more legit. If I had called as a "lone" case, I have no doubt , I would have been dismissed. I'm not ashamed I'm on SSD. I've worked hard my entire life in top corporations, holding my own offices and wits. "I" payed into this. As one doctor said..."Consider this a well deserved early retirment" It's meager for now....but without proper med assistance I don't know what I'll do or who I'll become, especially now knowing I have Temporal Lobe Epilepsy.

Michelle, we're in a quandry with so many others and I fear "The System" is going to get even worse.

Thank you for your post because it allowed me to identify, allowing my own rant. Sorry, I may have gone on too long but this is a huge problem and huge sentences are worthy of it all.

Let's wish us all luck - Cinnabar

[Georgiagirl88]

I know Laurie,

It is crazy. Hope yours works out too. And from everything I have read...I do not want to try the generic. Normally I don't mind them, but certain meds are not such a great idea. My neurologist said NO...so I will just have to figure it all out, I go tomorrow to the neurologist. I will let you know what they say. I am going to file an appeal and see what happens..???Who the heck knows!

Michelle : )

[Georgiagirl88]

Hi Julie,

Do you notice any difference with the generic?? I was curious. If my Dr. ends up saying to try it, I will..but what a pain! Hope you are doing well!!

Michelle : )

[Georgiagirl88]

Thanks Nancy!
I think we may end up doing the same thing. The Dr. said he'd be happy to do whatever was needed. It is such fun going round and round with insurance. :<<<
I'll keep y'all post posted on the results.
Hope you are feeling well!!!!

Michelle : )

[seizures4ever]

Hi Julie,
Do you notice any difference with the generic??
Michelle : )

Michelle,

I'm the wrong person to ask. I wouldn't notice any difference because I have horrible seizure control and always have. I wish I could help; Hang in there lady.

My opinion is that I really don't like being on generic anticonvulsants because my doctor advised against it, but I'm "medication poor" already...there is no way I could possibly pay for the namebrand meds. without insurance.

Take care. -Julie

[MichelleMC]

I just do not know what to do?!!!??!
I mentioned the bit about the the insurance changing their coverage and instead of my $20.00 copay that I have always paid..I will now apparently need to pay $100.00. (thought it was 85.00, but I was wrong)!!! Because there is now a generic..they will not pay. And from everything I have read
according to surverys, Drs., patients, studies, etc..the generic is not a good idea for the seizures. 2/3 of patients reported having breakthrough seizures and increase in severity/frequency. My Dr. called and he is more than willing to write a letter etc. I am just so... at my wits end. Insurance can be such a run around!! So basically they would rather risk a patient having seizures and more medical bills possibly than cover it. They said it was because of the plan my husband chose with his Company ( a major corporation) and we should opt for the other plan. There is NO other plan. We have BCBS. Ugh..he called and got the same screwed up answers and no solutions. What a pain in the butt..I just needed to vent for a bit!!! Today is not a great day..so I will move on from here and hope tomorrow looks up. Hopefully I will also find an answer.
Michelle

Hi Michelle,
I'm surprised you're having this problem with BCBS. I have BCBS(and individual plan) and I only pay $10 for my generics. There is no way I could afford to be on the brand name. The generics work for me, the same way the brand names have, because I have been on them when they were brand names as well. My copay will always stay the same but unfortunately my premiums always go up every January. I will pray that something will work out for you.

[Nancy]

Good luck Michelle -- Like I said - it took several expensive months but my incredible (far away, hard to reach) neurologist did insist on no generics and she worked hard to make certain that I get the "real stuff".
I hope yours will do the same thing.

And I'm sorry ~blush~blush~ I typed so badly and messed up with words. Gee, I'm bad with that. I embarrass myself so badly I wonder if I should ever even try to reply.

[hawke86]

I don't notice the difference between brand name and generics. They both work the same for me.

[Georgiagirl88]

Hey Thanks Everybody!
Great input from everyone. I go for my checkup tomorrow and will keep you posted on what they say. Last night was better, so I was really thankful!!

Thanks again!
Michelle

[hawke86]

I hope the input helps you Michelle.

[Cinnabar]

Hi - Michell - I've filed three appeals with no results. I'll keep my fingers crossed for you though. As things are getting worse at least we can comfort each other here.

[TexasTravel]

I have a mixture of several of yours with the same problems.
My insurance company insists that I change to the generic but I have been warned by the doctor to stay on the name brand. So, there is the battle again. I also take Lamictal and am on SSD and have the same SSD cost problems with it as Cinnabar. Get this, my insurance company has complained that I just need to start a business at home and start making more money and then I could afford it. Guess what?!?!?!? One of the reasons that my job put me on disability, in the first place, was that, with all of the medicines, my memory is terrible! It is hypocracy to the fullest.

I, also, having the same problems with Trileptal. My doctor is very picky about this one. He said Tripleptal or none. I have been through alot of medicines, although not as many as some of you have. I have been through Phenobarbital, Dilantin, Keppra and many others that I cannot think of right off the top of my head right now.
I will try the technique that Cinnabar uses with "Calling on behalf of my client" also. See if that works.

So, anyway, know that many of us have the same problems. My prayers are with you.
And, Cinnabar, let us know how that turns out also. That one will help in my situation also as we are in, aaaaaaalmost, the exact same boat on that one.

[Georgiagirl88]

Hi Everyone,

Laurie..keep us posted on how things work out. Texas..all I could think was ..OMG, are you kidding me? I wasn't sure if you were serious about the at home job. That is just crazy. Insurance is horrible, yet we all need it. It is so frustrating sometimes..
I will let you know what the Dr. says after my appt. this afternoon. I really don''t want to switch meds..nor does the Dr.
Hawke, thanks for the positive thoughts. And everybody, thanks for the well wishes. I appreciate. At this point I stopped worrying about it. It won't help. I figure I will just figure it all out, and thankfully my husband is great at helping me. He has made alot of the calls.

Michelle

[Cinnabar]

Texas Travel, Is this not a crazy world which so easily names us "crazy"?! I, too, have had just about too many "medication cocktails". Some of the meds wear out their efficacy and it's "Well, let's try this now". This is a situation I might have to accept the rest of my life.

SSD, Medicare, Medicade...filling out forms, keeping on top of them is like a full time job in its self. Everything is changing for the worse and so fastly. The case managers in the system have absolutly now explaination as to why costs are going up. They just go through the route of computer input. I acted as my own case manager over the phone, as I saw that I had do other choice. There was no one but myself to take hold of my life. I had a beautiful studio in an upscale complex and I couldn't afford the considerable rent hike. There was no doubt I'd be evicted. I had to "hussle" for myself. I was not stabilized for my Bi-Polar condition and at the time, in a kind of way, it worked to my benefit : I had the "energy" and did manipulate my situation "creatively". But on off hours I was rapid cycling. Crazy making painful. If you're going down the road, acting as your own case manager, just make sure you have all the information you need, take notes, get names.....I had five different colored folders all spread out on my carpet before me making call after call, taking notes, working through and up the beurocacy. Each colored folder was for the issue at hand. SSD, M &M, Housing etc. My close neighbor walked in and said "you can't be doing this all at one time!"I told her I'm "case manager squared". I succeded. Now, I may have some more "acting" to do with my Medicare situation. I'll keep you posted...yes, many of us are in the same boat. We must make this a "mantra"....we won't sink.

[TexasTravel]

Thanks for the encouragement everybody. I hope we can all learn from each others experiences how, more wisely, deal with these situations such as my and Cinnabars' experiences with SSD.

As far as the many, many medicines that I have been through, get this (and some of you may have dealt with this, in your own way). My doctor does not seem to understand how much medicine, amounts per type and amounts total, that my body can handle. I have had many experiences with "OD's". For example, and this one is hard to admit, and kind of embarrasing, but it demonstrates what I am talking about.

Several years back, I was taking at least two types of medicine in my medicinal "cocktail". I do not remember which ones they were at the time. I am on a different set now. Anyhow, I started to get where I could not stand up, was slurring my words alot, skipping from one subject to another without finishing the subject I was on, in a weird way, etc., etc. We consulted my neurologist and he just said that I was not eating enough and resting enough to be fully in control. So, I started sleeping alot and my mother kept me full, at all times. Finally, she made me move in with her with my step-father and her so she could watch me. (This was before I got married) I was getting irritated because my mother would not let me out of her sight, and I was about 35 at that time. Well, it turned out that she was right.

I take showers, like most people, but she wanted me to take a bath, instead, as I was dizzy, at that time, and she did not want me falling down in the shower. So, when I was in the bathtub for maybe 5 minutes at the most, it is kind of fuzzy, I started to shake uncontrollably and could not talk at all. I am not sure if that was a seizure of some other sort of condition. I was mumbling and froze up in a ball sort of way. She and my step-dad must have been listening right outside because they came running and my stepdad had to pick me up while my mother put my clothes on. Remember, I was 35 so that is/was incredibly embarassing. So, they rushed me to the hospital and took me to the emergency room. Once she told the doctors and nurse what had been going on they immediately rushed me in and started flushing my system with IV's and liquids. Turns out the doctor gave me a major overdose by my daily taking of his recommended prescription. I remember some of it, but in a trippy sort of a way.

Things are headed that way again, on my current medicines. My dosages are 100 mg Trileptal and 450 mg Lamicatle, twice a day. That may not be much to some people, but, to me that is a disaster waiting to happen. I have backed myself off to about 200 mg of Lamictal and 100 mg of Trileptal in the morning and 350 mg Lamictal and 100 mg of Trileptal at night. If I take the full, recommended, dose, within about 5 minutes I cannot walk and my speech starts slurring.

So, anyway, medicines are pain in the gluteous no matter how you look at it.


Sorry so long.