Hoping this works

[Sabbo]

Hello.
About a month ago, I contacted my neurologist because I kept getting breakthrough seizures. I recently had one, in fact, in the shower. He originally added zonisamide as a third drug.

When I explained that our new insurance will make us pay out of pocket for all meds, he had me start a slow switch over from Vimpat to Zonisamide. I really hope that Zonisamide can keep the complex partials down (at most) to what Vimpat has.
Vimpat alone would cost (at my dosage--400mg/day) a minimum $1,600/month! My Topamax dose, also 400mg/day, won't change. I'm not sure what he wants as the final dosage for Zonisamide.

 

[Porkette]

Hi Sabbo,

I'm sorry to hear that you have been having breakthough seizures, I know it happens to me every winter do to the lack of serotonin outside.

Just like you I've been on vimpat and it's sky high in price but it does help my complex partial seizures a lot. I was on zonisamide yrs. ago and it didn't help me at all but then I found out I was drug resistant. I know everyone is different but I have found the older seizure meds have helped me much more than the newer ones. I've been taking mysoline and Diamox for over 25 yrs. and they seem to help me the most when it comes to controlling my seizures.
One thing that my have triggered your seizure in the shower is the hot water, that often happens to me and my neuro told me that the hot water was firing up the neurons in my brain which in turn can trigger seizures for some people so you may want to try keeping the water a little cooler and see if that helps. I had the same problem when using an electric blanket trying to keep warm in the winter months. I wish you only the best of luck and May God Bless You!


Sue

 

[Sabbo]

Zonisamide is probably the only drug I haven't tried. I tried all the older AEDS--Tegretol, Phenobarbital, Primidone, Mysoline, Neurontin, Dilantin (for the simple partials)--even before I began having complex partials.
When those started, I was still on Dilantin. I think Keppra was the first AED they tried, but it made me double over in pain. I don't recall what Depakote did. I tried to add Lamictil as a third med, but w/in a few days, a rash similar to the one that Tegretol caused began on my upper back, & I immediately stopped it.
. Especially when I was just having simple partials it seemed like I would be fine for a while, then my brain would become "immune" to that medication and/or dose. Maybe the same thing is happening now.

 

[Ravensong]

So sorry you are having breakthrough seizures. I was on 700mg of Topamax for a long time, tapered down to 500 then 400mg, which I was on for several years. I'm finally tapering completely off of that and was put on Lamictal (which thankfully, I haven't had too many issues with).

When I was having breakthrough seizures, the gabapentin my neuro started me on for nerve pain around the same time stopped them within 2 weeks. You said you had been on that before. Do you remember what side effects you had with that?

I hope the new meds help! I know how discouraging it can be when you continue to have seizures on meds and have to keep looking for new ones to try.

 

[Sabbo]

Hello. I didn't have any side effects from Gabapentin (Neurontin). I was also on Dilantin--from before--at the time. I think my doctor took me off of it because it didn't help my simple partials (that's all I had at the time).

 

[Ravensong]

Hello. I didn't have any side effects from Gabapentin (Neurontin). I was also on Dilantin--from before--at the time. I think my doctor took me off of it because it didn't help my simple partials (that's all I had at the time).

Ah ok...

 

[Sabbo]

I saw my neurologist again on Tuesday. I told him that I'm still having breakthroughs--even with 3 drugs in my system.
He told me to decrease my Vimpat to 100mg/day, and to raise the Zonisamide to 200mg/day. I started that yesterday. He also told me completely drop Vimpat at the start of April, & raise my Zonisamide dose to 300mg/day. My Topamax/Topiramate will remain at 400mg/day.

 

[Nakamova]

So, more trial and error... (Hopefully less error!)

 

[Sabbo]

The trial & error story continues as do the RIDICULOUS AED prices. I've had fewer breakthroughs on Xcopri, but it looks like I'm going to have to drop it due to cost, now too. If I want to continue taking it, our out-of-pocket cost (with insurance) would be over $570/month just for this AED--& our insurance has only been allowing monthly refills. I was OUT--tonight's dose was the last I had. I called the pharmacy to see if they could give me a 7-day refill so that I can get in touch with my neurologist about it. I think even he didn't realize/know what the out-of-pocket expense would reach. Even that 1 week refill (7 tablets) will cost $160!!

 

[Sabbo]

Thankfully, my neurologist's office came through. I emailed with them & I filled out the patient assistance forms on the company's website. They just called me and told me that I've been approved until the end of next year. When I go to pick up the remaining tablets from this month's prescription, they shouldn't charge a penny. Part of the problem with this AED's cost is that this is what's called a level 5 medication.

 

[Nakamova]

I’m so glad you got some relief from the cost. It shouldn't be this hard to get necessary drugs at real-world prices.

 

[Sabbo]

Sometimes, even when the manufacturer says one thing, the pharmacy or insurance co say something else or cause other problems. After paying $160 for 7 pills, I had to pay $55 when I went to get the next 7. I asked the pharmacist & manufacturing co rep about it. The pharmacist didn't have an answer, & the representative said I might have been charged again if the neuro wrote a new1-week Rx--they should have given me the rest of my Rx at once. If it keeps going like this, December's Xcopri will cost me around $300!

My husband was complaining about the cost of these things, so I'm decided that no matter how beneficial Xcopri is to me, I'll just have to stop taking it if these cost issues can't be solved. The tension from this problem will trigger seizures, even if I'm not consciously thinking of it.

 

[Nakamova]

I hope that the price will get straightened out, or lowered. Honestly, it just sucks that you might have to make a choice between seizure control or finances.

 

[valeriedl]

I was hoping to try Xcopri. My insurance didn't cover it and I found out that it was going to cost me around $1,000 a month. I couldn't afford that. My neuro said that he could try to do something to help with the cost. But the only thing he probably would able to do was to find some sort of discount that lasted a few months.

I might not know if it was helping if I was only taking it for a few months. Plus after those months I'd have to start paying the $1,000 to stay on it.

Good luck and I hope it gets worked out!

 

[Sabbo]

I was able to get help not only through our insurance, but through the company that makes Xcopri. I went to their website & filled out the patient assistance form. Later, they emailed me asking for more financial information. I gave them what they asked for--a break-down of our monthly expenses. Thankfully, they approved me, and my cost for all my meds will be around $100/month.

 

[XxBlaqkxX]

Thankfully, my neurologist's office came through. I emailed with them & I filled out the patient assistance forms on the company's website. They just called me and told me that I've been approved until the end of next year. When I go to pick up the remaining tablets from this month's prescription, they shouldn't charge a penny. Part of the problem with this AED's cost is that this is what's called a level 5 medication.

Tier 5's are a pain, especially with insurance companies because the insurance doesn't wanna pay that, either.

 

[WeAreOne]

I was able to get help not only through our insurance, but through the company that makes Xcopri. I went to their website & filled out the patient assistance form. Later, they emailed me asking for more financial information. I gave them what they asked for--a break-down of our monthly expenses. Thankfully, they approved me, and my cost for all my meds will be around $100/month.

Very cool. I was wondering if you would be able to do that. I'm maybe on board for Xcopri as my next AED so it's good to know. All of your meds for $100/month? That's pretty damn decent.

 

[Sabbo]

Hi. The issues we've been having with Xcopri's cost have apparently taken a toll on me. Despite not missing any dose of medication, I had THREE complex partials today!! Thankfully, my mom's spending the day & night, & witnessed them. I spilled hot tea all over myself in one of them. Luckily, I wasn't burned. I fell onto our glass top coffee table, face first, in another. Thankfully, I wasn't hurt then either.

 

[XxBlaqkxX]

Hi. The issues we've been having with Xcopri's cost have apparently taken a toll on me. Despite not missing any dose of medication, I had THREE complex partials today!! Thankfully, my mom's spending the day & night, & witnessed them. I spilled hot tea all over myself in one of them. Luckily, I wasn't burned. I fell onto our glass top coffee table, face first, in another. Thankfully, I wasn't hurt then either.

I'm glad that you weren't terribly injured. I do hope you have better days and feel better.