Concerned Girlfriend

[SmartKitty]

Hello everyone. I'm a 21 year old female dating 22 year old male with epilepsy. We've been dating for 2 years and are getting very serious. I have been with him when he's had his auras, and he has experienced the different "levels" of auras around me, but has never had a full seizure where he blacks out while we've been dating. He was taking Keppra for a while but switched to the generic brand and seems to be having trouble with it. His symptoms occur much more frequently and to a stronger degree. I still have trouble understanding the kind of epilepsy he has, but I know it's in the temporal lobe and he doesn't convulse, only blacks out.

I want, more than anything, to be someone he can trust and lean on. He has been epileptic since before kindergarten and so his family has come to a certain point where I think they worry too much and stress him out further. He always apologizes for his epilepsy, and I want to be someone who he doesn't feel he needs to apologize to.

Something I am struggling currently is the lack of knowledge. Today, he had a horrible aura, lasting all day, with tunnel vision, altered smells/tastes, confusion, sound sensitivity (possibly more). He blacked out for a split second in the shower and lost his bladder control, which he says hasn't happened to him in a very long time (his last seizure was before I met him). His symptoms have never lasted so long at such an uncomfortable level for him (in the past 2 years) and it's killing me that I can't help. I'm away at school and can't be with him. I've been scouring the internet for ways to stop the symptoms, and I'm feeling hopeless that there isn't really anything I can do. I know that waiting it out is really all that will help, but it breaks my heart to see him so unhappy.

I'm not really sure what I'm looking for by joining this forum, but I hope I can meet some good people who can guide me through this.

[momof3boys]

I have epilepsy in my left temporal lobe. What he is having, sounds very familiar to what I have when I have seizures. I have had epilepsy my whole life. I just turned 30 this year and had my very first video EEG done in March. Prior to that, I was having complex partial seizures, and grand mal seizures. Those are seizures where it affects the consiousness of someone. The complex partial seizures affect the consiousness partially, while the grand mal seizures you lose full consiousness. Ive been having simple partial seizures since March, where Im fully aware of whats going on during the seizure, but unable to stop the seizure from over coming me. Ive had seizures where I black out too, for a few seconds and then come to realize what happened afterwords. My auras are symptoms like, where I feel "out of it", I get a feeling of fear or sadness that overcomes me, my heart begins to beat faster, the pit of my stomach feels nausus, and I get tingling in my left part of my body, which as the seizure begins, spreads to my upper body and goes to my face, where It feels like a million needles are poking me. My body stiffens and my right side of my body jerks. My seizures last for a minute or two. Im consious through out the entire thing, thats if it doesnt get too intense and I dont black out for a second or two. After the seizure is over, I feel so weak, and tired. I feel like Ive been hit by a truck. My head hurts too. I just feel really sluggish.

Ive been on a ton of different medications during my life with Epilepsy, but Ive been on Keppra since the age of 18, along with Carbatrol. In March, I was taken off the Carbatrol, and put back on Keppra. Before having the video EEG done, my dr tried me on Keppra XR because I was having alot of headaches, and that took all the headaches away that I was having with taking just the Keppra. I know if I dont get enough sleep, or have too much stress, it triggers seizures for me. Ive never been on any generic medications, all have been the name brand.

Has your bf been on the generic for a long period of time? Has the changes happened prior to being on the generic form? If these are things happening after being changed to the generic, I would for sure have him give his neurologist a call and tell them about it. Some people can handle the generic medications, and others cant. But for his health and safety, I would calling the dr to let them know of the changes that are coming about.

[BlueSkies2220]

Yah thats true - any change in his seizure pattern or tolerance could signify to his neurologist that something is not right with the type of medication and the dose. I think that if seizure remain uncontrolled that they build their own pathways in the brain where the brain uses those new pathways making subsequent seizure a lot easier to occur. I wouldn't leave him alone at this point because a complex partial could generalize, even if he does not have a prior history of tonic clonic seizures. it happened to me after getting complex partials for years - after being unmedicated for so long, they started to generalize.

[SmartKitty]

So as I mentioned earlier, Jon (my boyfriend) was taking the generic brand of Keppra (Levetiracetam). He had been taking the brand name Keppra before then for more than 4 years and had only had one seizure while taking it. He only switched to Levetiracetam recently, and has been having strong auras frequently since he switched. He went back to the neurologist who determined that his complex partial seizures had calmed down to partial seizures, but were becoming more frequent. The doctor had him try Banzel, and try to induce an aura by watching Kanye West's "All of the Lights" music video. That music video even bothered me, a non-epileptic. I took notes on his reactions to the flashing colors and he reacted poorly, having a lot of aura feelings. The doctors took his blood levels and decided to put him back on Brand name Keppra, taking 4 in the morning and 3.5 at night.

He's doing much better now, but I am worried again about one thing. Keppra, as I'm sure a lot of you are aware of, is like a million dollars per bottle without insurance. He has insurance, but we are worried that the expense of the medication will put financial stress on both of us when we move in together. Does anyone know the best insurance plan for saving money on epilepsy meds? I also wonder, if Jon has increased his dose of Keppra to 7.5 pills per day, how much will he be taking when he's 50??

[Nakamova]

I'm glad the brand keppra seems to help. You might check out this thread: When You Can't Afford Medication

[momof3boys]

I go through my husband's insurance, but I was given a keppra savings card. When we would purchase the medication at our local pharmacy, we would be paying $150 for the Keppra (500mg tablets) for a 6 month supply. The savings card saved us $30, so it would be $120 for a 6 month supply. They changed our insurance around now, so we cant order 3 or 6 month supplies at a local pharmacy, but have to go through a online pharmacy. But if youre interested, here is a link that tells more about how you can get a savings card.

http://www.keppraxr.com/about/savings_program.aspx

[SmartKitty]

So Jon had a seizure last night. He was taken to the ER in an ambulance and the doctors there told him that he needs to up his dosage of Keppra to two grams a day (i think? that sounds like an awful lot but thats what he told me). What scares me the most is that he was seemingly doing so much better than when he was having the auras on the generic brand. He really seemed to have banished all his symptoms, then out of nowhere he has a seizure. I'm sure that feeling is familiar to many of you, but this is the first seizure he has had as my boyfriend. I am still a long distance from him and no one even told me what had happened. I guess I understand that in that sort of emergency, no one is really thinking about me.

A new symptom this time was a muscle contraction in his back. The doctors told him he probably tensed it up when he was shaking (from the fear symptom) but it's really hurting him in his rhomboids and he wants to know if it might have been from the seizure itself. His seizure went "in and out" of consciousness, so he might have had a couple or just one extended one. It didn't make him black out for hours like they have in the past.

It makes me wonder if it is really a wise decision for him to move away from home and live near me. I don't know how to care for him and I can't afford an ambulance. Hopefully we can get discounts on the medication because if they keep raising the dose we will be broke as soon as we try to start paying for it ourselves...

[Nakamova]

It depends a bit on what kinds of seizures he has and what happens during them. If the seizure lasts for longer than 5 minutes, or there might be a severe injury, then yes, head for the ER. But an ER visit isn't automatically required after every seizure. I've had quite a few grand mals, both at home or with friends, and I just stay put afterwards. I don't need an ambulance or an EMT, I just need a bit of time to rest and clear the cobwebs out of my brain. There's usually some soreness and/or bruises, but nothing serious. If I think that a medication issue caused the seizure, then I can call my neurologist to discuss it.

I hope your boyfriend gets seizure control with the higher dose of Keppra. If he doesn't, then the two of you will need to get a sense of how disruptive or serious his seizures are, and if you feel comfortable or confident when he's having them.

[SexyMama208]

If you love him. You will stand by him. It's hard to understand trust. I've had my siezures for along time and have a 5 year old son and I'm engaged. If the Keppra (brand nam) seems to work best he needs to go to that. That what my problem was. My pharmacy switched my Keppra to generic with out me knowing and I needed to be on brand name only. I take 1000mg in the morning and at night.

[SmartKitty]

There is no doubt in my mind that I am willing to stay with him no matter what. Epilepsy is a terrifying thing to experience, even as a bystander, but I would much rather be by his side with him than leave him because of his condition. He is a beautiful person with amazing skills and compassion.

Jon has been doing GREAT on the new adult dosage of Keppra. He hasn't had any auras since, but we are still worried about the prices. He is looking into some of the discounts and ways to save.