Breakthrough seizures

How many people taking anti seizure medications experience breakthrough seizures?

  • I take medication for tonic clonic seizures and I experience breakthroughs.

    Votes: 20 40.8%

  • I take medication for complex partials and I experience breakthroughs.

    Votes: 20 40.8%

  • I take medication for simple partials and I experience breakthroughs.

    Votes: 19 38.8%

  • I take medication for seizures and DO NOT experience breakthrough seizures.

    Votes: 3 6.1%

  • I take medications for seizures and I'm not sure if I experience breakthrough seizures.

    Votes: 2 4.1%
  • Total voters
    49

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julie wishes

julie wishes

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How many people taking anti seizure medications experience breakthrough seizures?
 
I have all three types and I have had breakthroughs on every medication, except for Depakote. I had to stop taking Depakote due to the side effects though.
Keppra has been doing the best, but they're poorly controlled, at best.

Lamictal, Topamax, Tegretol, Trileptal etc. gave me only side effects, and no seizure control at all.
 
I've always had breakthroughs on Tegretol but they've become more frequent so I've just been put on Keppra as well. I have CPs and TCs.
 
Should be non-public now.
 
I have complex partials with breakthrough seizures. I wonder why that seems to have the highest amount of breakthrough seizures?
 
I've had break through seizures, both TC and CP. Fortunately, I haven't had a TC since 2005, but yesterday at Starbucks I did have a breakthrough CP. Damn! I hadn't had one in quite a while. I used to have lots of breakthrough CP's after trying 9-10 meds. Nothing has worked for me. :(
 
I'm sorry to hear that you had a breakthrough at Starbucks. If we have to have seizures, we should at least get to choose three places where seizures are off limits. Starbucks being the first one. Then maybe the pool and your kids school. :)

Is that what they call intractable seizures??? When meds don't work?
 
Let me state this....I have had breakthoughs in the past. I think.... before they got my med levels figured out I had T/C's so infrequently every few months or so it has been difficult to figure out the meds.....so everytime i had a seizure they raised the meds, added a med etc.... finally after 4 years of this I think they have this figured out since i have gone 7 months of being seizure free which is the longest I have been in 4 years. Although now I think I may be developing complex or simple partials in addition to T/C's not sure. May have had one in July. Not sure.

Tina
 
It is suspected I have in betweens, but has never been confirmed. It wasn't until I apparently had a 2 hour conversation with my best friend and have NO memory, nor do I have memory of texting her a couple times in the middle of the night, did I bring it up to my family doctor.

I didn't think you could do "normal things" (phone call, text, ect...) while having a seizure.
 
You most definitely can do "normal" things during a seizure.... :) lol. Funny to think about, but sucky to live through some times.

I'm wondering if there are people who are seizure free on meds.

And, if not seizure free.... are the breakthrough seizures less intense somehow? Or the same, just less frequent?
 
Nakamova said:
I am. :)
Click to expand...

I'm glad to hear that :). 217 people looked at this post. Funny so few answered it. I wish more would. Especially if seizure free.

Nakamova those two little words just brought the hugest smile to my face. We need more success stories rolling through these posts. It gives hope and inspiration to all.
 
I answered the vote but didn't post so here goes...

Since moving into the house I am down to 27.4 seizures a month. During the time frame from house offer to move in I averaged 54 a month and it was a relatively easy process, ie financially easy, we had paid movers and I only had to pack/move my office, bed and clothes, we bought everything else after we moved in. To date (about 20 months detailed tracking) average is 34.4 a month.
 
julie wishes said:
I'm glad to hear that :). 217 people looked at this post. Funny so few answered it. I wish more would. Especially if seizure free.

Nakamova those two little words just brought the hugest smile to my face. We need more success stories rolling through these posts. It gives hope and inspiration to all.
Click to expand...

:agree: Indeed, it gives me hope.
 
Jon had one breakthrough tonic/clonic during 3 1/2 years of being on Topomax. Then, he started having more breakthroughs -- about one every 2 or 3 months (all tonic clonic).

Increasing the medication amount did not work. Instead the seizures became more frequent, and he started having daytime seizures, which he'd never had before. Also started having tonics along with the tonic clonics.

Changing meds (Trileptal, Lamictal, Depakote) didn't help -- just made things worse. By that time, we couldn't call them "breakthroughs" any longer -- they were worse than before starting meds in the beginning!

Ketogenic diet gave him 11 months of NO seizures, but then he started having breakthroughs -- about once a month. Now back to horrible nightly seizures, but apparently thyroid and other issues bringing these on this time.
 
KarenB said:
Jon had one breakthrough tonic/clonic during 3 1/2 years of being on Topomax. Then, he started having more breakthroughs -- about one every 2 or 3 months (all tonic clonic).

Increasing the medication amount did not work. Instead the seizures became more frequent, and he started having daytime seizures, which he'd never had before. Also started having tonics along with the tonic clonics.

Changing meds (Trileptal, Lamictal, Depakote) didn't help -- just made things worse. By that time, we couldn't call them "breakthroughs" any longer -- they were worse than before starting meds in the beginning!

Ketogenic diet gave him 11 months of NO seizures, but then he started having breakthroughs -- about once a month. Now back to horrible nightly seizures, but apparently thyroid and other issues bringing these on this time.
Click to expand...

Gosh, sounds awful. To go through so many meds and ideas only to end up worse and I'm sure disappointed. :( sorry to hear this. Thyroid is so important and involved in so many bodily functions, maybe getting a handle on that will straighten things up a bit. Hugs to you.
 
Yes, it affects Metabolism, for one thing. His Nutritionist is hoping that starting Thyroid meds will assist the Keto diet in regaining control. We're also starting him back on AED -- but his Neurologist says he's pretty much run out of options with meds (we've had 2 neurologists tell us this). But he DID have good control for 3 1/2 years with Topomax, so we're going to go on Zonegran this time -- similar to Topomax -- and see if it works, along with the Keto diet.
 
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