I may have already asked this,but here goes:Is anyones meds not"exactly" stopping a seizure?Ihave cps with aura and possibly sp [not sure,different from usual pattern] My trileptal seems to have made a difference in alot of the weird interictal crap,and I dont find myself missing time,but I seem to "start to have a sezure" What I mean is that I get an aura of human excrement,the nose buzzing,the trying not to vomit from too much saliva and the choking sense that we are in danger but it never progresses where i wind up somewhere or I zone out or I have cut or burned or forgot something in kitchen or elsewhere.So whats your experiences?Would you consider this to be the meds only doing half their job?Because if this is all Im going to get,I feel I can handle this better than an increase or different med.Im tired of being doped up.I dont have any hallucinations anymore or weird psychotic stuff,so I am considering myself lucky compared to others.As long as this doesnt progress into what used to happen 2yrs ago,I really dont want to say anything and take that chance.Any opinions or suggestions would be welcome,but i guess I really want to know if any of you are half-controlled like this
Seizure progression
- Thread starter mel239
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Endless
Even Keel
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Hi, Mel,
I'm on Trileptal 1500mg, and Lamictal 25mg. I'm ramping up on the Lamictal to get off the Trileptal because of side effects (blurry vision, absolute exhaustion, depression).
I still have 1 or 2 auras per week, some of them several hours or day-long. Some result in a seizure, some don't. My seizures are simple and complex partials. I haven't had a CP for about a month, since I've been on the current dose - 1500mg.
My epi says that auras are seizures all on their own, and to make sure I put them down in my seizure journal. Yes, they count.
One thing that's kinda different for me on trileptal is I feel the auras stop like a light switch going off. Click. Before i'd just kinda notice it stopped.
On 1350mg I had a lot more auras, and a few CP's, so the doc upped my dose to 1500. He seems to be happy with the current one or two seizures a week (as opposed to the old 3-5 per day)
You may need your dose increased also. It's worth asking your doctor, anyway.
What dosage are you on? By any chance do you know what your blood level tested at?
I'm on Trileptal 1500mg, and Lamictal 25mg. I'm ramping up on the Lamictal to get off the Trileptal because of side effects (blurry vision, absolute exhaustion, depression).
I still have 1 or 2 auras per week, some of them several hours or day-long. Some result in a seizure, some don't. My seizures are simple and complex partials. I haven't had a CP for about a month, since I've been on the current dose - 1500mg.
My epi says that auras are seizures all on their own, and to make sure I put them down in my seizure journal. Yes, they count.
One thing that's kinda different for me on trileptal is I feel the auras stop like a light switch going off. Click. Before i'd just kinda notice it stopped.
On 1350mg I had a lot more auras, and a few CP's, so the doc upped my dose to 1500. He seems to be happy with the current one or two seizures a week (as opposed to the old 3-5 per day)
You may need your dose increased also. It's worth asking your doctor, anyway.
What dosage are you on? By any chance do you know what your blood level tested at?
RobinN
Super Mom
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Mel - I can only make an observation due to my daughter's situation.
Her seizures became worse and multiple types. Since she has been off medication, she has had only one type (TC) and they are increasingly getting less and less, due to alternative therapies.
Increasing meds on my daughter MIGHT have slowed brain activity enough to stop all seizures, but the quality of her life would have been terrible. Taking a more natural approach, by working with neurofeedback, nutrition, and supplements has allowed her body to heal IMO.
Her seizures became worse and multiple types. Since she has been off medication, she has had only one type (TC) and they are increasingly getting less and less, due to alternative therapies.
Increasing meds on my daughter MIGHT have slowed brain activity enough to stop all seizures, but the quality of her life would have been terrible. Taking a more natural approach, by working with neurofeedback, nutrition, and supplements has allowed her body to heal IMO.
Thank You Endless.Thats exactly what I was a curious about-that lightswitch effect of seizure stopping.I feel you lifted a weight off my shoulder just by knowing the answer to something thats been bothering me and making me feel Im not alone.Guess thats one of my biggest fears is that Ive had such crazy experiences that I couldnt even tell the Epi about all of them-worried that by making them a part of written record that it might be used against me to try and take my kids.I heard there was something where the HIPPAA doesnt apply if a Childs homelife is in question or something like that-anyway Im on total of 1050mg trileptal and I just had my levels checked Friday so i dont know how they are.accidentally took a month worth of generic that threw me into 3 seizures right after each other.Now trileptal feels STRONG as hell-
Quality of life is what Im looking at-Im no spring chicken-lol.Im 46 but I have 8 kids scattered between 27 and 2 and I want to be part of the various stages of their lives.I feel Ive probably done a passable job in the past couple years since this E has taken off rampant,but my Epi is one of the best and he feels seizure control is more important at this stage of the game.Honestly,some of the crap thats gone on in my head-I do too.But once weve managed this,I want to start tweaking and trying different things like you mentioned,esp neurofeedback.Im just reaching the point of wanting to be proactive in my care.I think alot of people,when they finally find a dx and a good doc want to put themselves in his expert hands for awhile-I know I did I was so darn tired of searching!
No,not for the actual disability,but if someone gets a peek at the craziness in my head,although most is pretty much under control,they may think that its not a safe environment-youve heard horror stories about childrens services-theyre ALWAYS looking out for the best interest of the child-LOL- I have told my psych everything including my fears about social agencies and my fears that they may want to lock me up in a psych ward for evaluation when you start getting into altercations with total strangers.Never know when you might get hauled into court and judge might just do that.I have a slight loathing of our justice system.I KNOW IM A GOOD MOTHER and I do everything to keep my kids in a safe environment and happy,if I thought that wasnt true,Id get help.