Vimpat - progress, good stuff!

[appsandsuch]

Hey all,

Sorry for the long post, I'm a talker. I just wanted to give you a quick update. It's been a long bumpy road since my seizure activity increased a little over a year ago after being relatively controlled (it went from a couple simple partials a month to multiple auras if not simple partials, and sometimes complex partials, every day.)

I was on the drug rollercoaster, side effects galor, with tons of EEGs and MRIs, and just felt like my epilepsy was taking over my life. The biggest, scariest part of it was the pre-ictal, ictal, and post-ictal fear and anxiety that were attacking me with each episode. It's like the scariest thing in the world is happening everytime I experience an aura or seizure.

Eventually I found a good balance with no (noticeable) side effects on Carbatrol (which I've been on for a decade plus), Vimpat (which was new to me at the time), and a super tiny dose of Klonopin daily (which I'm hoping to wean off of eventually.) It took some time, and some small increases in Vimpat, but I realized the other day that my last noticeable seizure had been March 19th. This doesn't mean that it's not still affecting my life on a daily basis- I do frequently have auras that are a little debilitating because of the potential of a seizure, which brings on the fear (the auras and the fear are tied together now, probably at this point psychosomatically) and there are things in my daily life that I'm avoiding that I wouldn't have before (I can't go into a CVS or a supermarket, or any place that uses those flourescent lights anymore).

However, regardless, I do feel like I have a little more control over my life, and I have to say it must be because of the Vimpat. My stressors are the same, my daily life is the same. The constant fear of having a seizure is slowly (I should emphasize the slowly) dissipating and not taking over my world.

I was wondering if perhaps I was having seizures without noticing- that maybe the medication was taking the severity down a notch. I know that there have been times recently that, during what might be an episode, I barely notice it, but do notice some of the post-ictal symptoms, so I'm relatively certain there's some stuff going on that passes me by without too much notice. If that's the case, and I'm having seizures I don't notice, that's fine by me.

But last night I woke up in the middle of the night and had a simple partial- a type that I'm familiar with- and my mind, instead of freaking out, was like "oh, I'm having a seizure...no biggie. It'll be over shortly." There was no debilitating fear, there was no anxiety attack, there was no over-thinking it afterwards. It was like years ago when my seizures were just things that happened, and the only time they affected me were the few seconds that they happened- nothing before, nothing after. Last night I got slightly nervous afterwards simply because I had had a seizure, but I know it was a conscious fear rather than a side effect of the seizure activity. And those nerves went away not too long afterwards once I realized that the severity of my seizures were now lessened to the point where I no longer had to be afraid of them. There would be no chemical depression for a week afterwards. There would be no being stuck in my head for hours, worrying.

I know that this is premature celebration, and that there's always the potential for those types of seizures and fear to return, but the fact that I can have what would be a documented seizure and not have that fear tagging along is a big deal to me. It's been years since I've had that happen. I've often thought that the seizures themselves are no big deal to me- I don't drive (bummer but oh well!) and my seizures are 95% simple partial, so I'm always conscious enough to just deal with them- it's the complete and utter fear that makes my epilepsy so awful. If that's gone (hopefully,) then perhaps I won't mind having episodes every so often. Of course the goal is always complete control, but so what if I don't achieve that?? The auras have been getting less and less over the last couple of weeks. Maybe they'll slow down and I can regain my life again!

I'm still hoping to start neurofeedback as well- it's been a long process of collecting data for them, and getting my shit and their shit together, but I'm hoping it only helps the situation!

Here's to hoping today goes well. In the past six months, all my seizures tend to cluster, so I took some ativan (which I hate!!) to stop the potential of that, and I know I'll be dealing with the side effects of that shortly. But if today is seizure free after a mild one last night, I know progress is definitely being made in more ways than one.

Yay! And thank you Vimpat. I do believe this is because of you. I raise a glass of alcohol (that I've been avoiding like the plague in fear of seizure), to you.

Sarah

 

[Nakamova]

It's good to hear you've found a combo that works! It can be such a frustrating process -- the medication merry-go-round plus the reflex fears and anxieties -- so it's nice that you made it to a healthy milestone. I hope that neurofeedback makes things even better.

 

[alicia1206]

To hear this is really encouraging for me. I too, just started taking the Vimpat in addition to Tegretol and Klonopin (PRN). It has only been 2 weeks on the Vimpat, but I hope that it can stop the complex-partials that I am having on a daily basis (so far, so good). I understand all too well the anxiety that accompanies the seizures, it sends me into a near panic attack. Scares me to death!! I still wake up in the morning feeling panic'd. A few times out of the day I feel the panic, but the seizures are so small that I hardly notice them.. It is so encouraging to hear that there are others going through the same things that I am. Again, I think this is WONDERFUL!.. Thank you for the post.

 

[SteveUK]

Hi Sarah,

Thanks for your detailed post on Vimpat, I don't mind reading long posts as sometimes it's enlightening to hear an in-depth account of what people are going through as they can be similar to your own experiences. Inf fact, I found your post very useful!

I'm due to start on Vimpat in about a months time following weaning off another medication. There is lots of written material out there on Vimpat, but I like to balance clinical trial results with personal accounts. I only joined this site yesterday and already I'm finding it very useful.

I hope Vimpat is still working for you, please keep me posted on how things are.

Nothing like raising a glass of wine now and again to small, but nevertheless significant, successes. So cheers from the England!

Steve, UK

 

[appsandsuch]

Hi Steve,

I agree with you- you can only rely so much on clinical trials to give you a full account of what using a certain drug might mean to you. Vimpat is indeed still working for me. I sometimes (fairly rarely- perhaps three or four times since I've been taking it) experience the vision issues that can come along with the medication, but it's something that, in the grand scheme of things, I could care less about!

To me, what Vimpat represents, other than my own personal successes with it, is the advancement of treatment for us. It excites me that there's something new, the possibility of moving forward. Perhaps the next step/advance is something that stops seizures in all epileptics.

I hope Vimpat works for you. I was super anxious about trying it, but I'm so glad I did!

A toast indeed!
Sarah

 

[SteveUK]

Hi Sarah,

Thanks for your response, in particular your following comment:

"To me, what Vimpat represents, other than my own personal successes with it, is the advancement of treatment for us. It excites me that there's something new, the possibility of moving forward. Perhaps the next step/advance is something that stops seizures in all epileptics" :agree:

How insightful!! :clap: I loved reading this! Sometimes it all to easy to get caught up in the harder issues surrounding Epilepsy and we can have a tendency to dwell on these, your comment really signified the particular importance of new scientific research into Epilepsy and moving forward. I knew there was a reason why I bought the New Scientist from time to time

Thanks a million! Another cybernet celebratory glass of wine / high five heading right at you!!

Steveo

 

[thoffert05]

Thank you for your amazing posts "appsandsuch", and sorry my response is long I am relatively new to this whole epilepsy thing. I only knew for sure I had it just over a year ago July 29 2012 my very first Seizure I remember having. I relate to "anxiety that were attacking me with each episode. It's like the scariest thing in the world is happening every time I experience an aura or seizure. " 100% as that is where I am at now, I can't even leave the house or use the restroom without fear as I am starting to associate what I am doing at those events and starting to fear them too. I just started vimpat a few weeks ago and am not up to my full dose yet. I really hope this stuff stabilizes me. I have so far tried Keppra and Lamictal and have had seizures with those drugs too and at the moment I get tons of events where I feel like I am about to pass out or dizzy (side effects) those remind me of seizures and scare me allot. I do sort of get auras which are usually the feeling I am having a seizure and scare me really bad, I know it's just an aura because I don't actually enter a seizure, I have heard that an aura is technically a seizure. I personally am not affected by flashing lights, but I don't look at them anyway just in case. At this point I am filled with fear related to stuff I was doing when a seizure occurred. I don't drink alcohol because luckily I don't like it and besides I can't drink it anyway. I heard from a neurologist once that I was a worst case scenario for seizures given my brain damage. I am pretty much a normal person otherwise, which is amazing given I should have died over 2 years ago. I feel like my life is a mess at the moment from all my fear over seizures, They are literally the scariest things of my life. I am curious does vimpat actually work and has it allowed any of you go a year at least seizure free preferably several years? I am terrified of not being under control or being under control and having them start up again, like what happened once already to me, especially if I start driving again.

 

[appsandsuch]

Hey thoffert05,

Sorry for the late response. To answer your question, Vimpat hasn't necessarily made me seizure-free, but it has absolutely changed my life. I try to keep the bigger picture in mind, and to notice patterns in my activity that might help to "solve" for things in the long run. (It takes me forever to notice pattens...I could eat something every day and make myself sick for years before making the connection).

I have more activity than I'd like- it tends to come and go. I'll have a day or two where I'm more unstable than others, and then be fine for weeks with only quick, mild auras every once in a while that remind me "oh yeah, you have epilepsy." I think what frustrates me the most is not being able to be in control (I'm a touch type A!) Luckily for me, and I suspect many of you deal with this as well, I have a terrible memory! What this means in relation to what you're asking/discussing, is that, on my good days/good weeks, I don't remember the bad days as strongly, and I'm not afraid of having seizures, so that fear doesn't really take over my life. I'll have a collection of a bad three or so days where I feel like I'm going to have a seizure at any moment, and then, yes, it totally sucks. I forget what it's like to feel "normal,' to be in control. But then the clouds part, I feel great, and I'm good to go for awhile. During these times, my epilepsy isn't a limiting factor in my life.

Also, one of the things I've learned to do is to find a specific "safe place" and routine for dealing with these seizures. For example, a good amount of activity for me happens at night these days. So I get out of bed, go to the couch, curl up with the dog, turn on the television for some background noise and something to give me comfort, and i use my iphone to time the distance between auras/activity. (My seizures tend to present as collections of panic-ridden auras). This helps me because a) I can see when the auras are getting further and further apart, so I know it's ending (sort of like dealing with pregnancy contractions, but in reverse), and b) my auras also come with a "jamais vu" sensation. If I consciously know that I'm in a safe, familiar place, I like to think it helps just a little. Also, it means I'm not associating a ton of different places with seizure recovery. I think that if I stayed in bed during these episodes, it would make me anxious every time I got into bed. (Not sure if that's true or not, because the couch doesn't make me anxious). However, what it DOES help with is my anxiety about falling asleep. The bitch with my nocturnal seizures is that they happen just as I'm falling asleep, so, no matter how tired I am, I cannot sleep. This, in turn, makes me even more anxious about not falling asleep at a decent time and perhaps contributing to a cycle that will keep me tired and cause more seizure activity the following day. By going to the couch, I take sleep out of the equation, and it helps to ease whatever anxiety that I DO have control over.

Anyway, I recognize that not everyone has the luxury of controlling where they deal with their seizures, but if there's a coping mechanism/routine that you CAN implement, I recommend it- it might help take off some of the edge. Also, I've written quite a bit, so I'll probably stop now

Hope all is well with all of you!
Sarah

 

[thoffert05]

Thanks appsandsuch, I wish I was tolerating this epilepsy as well as you are. Thanks for your words on how you deal with it. I as well have 2 "safe places", My bed and my chair outside with the dog. I am sorry for your insomnia because of seizures at night. I currently don't have seizures while asleep though I do have nightmares that I am having one sometimes with real sensations the only difference however is I can wake up from that and not actually have one. (I hope I didn't just curse myself there, [Whenever you say it doesn't happen to me is when it does]) My biggest fear at night is passing out.

I think I have auras but I am not sure it's hard to describe it's a feeling like "I am about to have a seizure, and I get very annoyed about stupid stuff like my music, ect...", It always happens seconds before I go into a seizure. I am pretty sure it is an aura because I Have felt it before without have a typical seizure, I have read that an aura however is actually a small seizure. I hope Vimpat works for me if it doesn't I should have one between now and January 7th. Also my doctor said if I have another one I will have to be hospitalized and tapered back on my meds so they can have an EEG going while I have one to find something that deals with it better. If I make it until April I can rest a little easier.

I agree about the not in control thing. My most frustrating issue is I still have no triggers which scares me because I can have one anytime anywhere. I like you log everything in my phone every feeling and every seizure.

I have notice some new side effects with Vimpat though like anxiety and rapid pulse rate or hard heart beat. I like you have good days and bad days. The bright side I have found out of all this is I must pray multiple times a day and rely on God to help me through even the small things like walking to the bathroom at work or helping me with the long car ride home.

Update to my meds, I am almost totally off Lamictal now at ~75mg per day as opposed to 300mg per day. My Vimpat was raised allot and now 400mg per day and my Keppra is unchanged.

Sorry I talk allot too, there I think something therapeutic about this and also I think it's a side effect of my medication. I think I am done for now. If you find this as helpful as I do I wonder if we can take this offline sometime to not fill up this forum and talk over email. I am glad you have a strategy!

Hope you do well
Tony