Since october I have been having episodes. The first one started with my vision going white, feeling very faint, and then for approx thirty seconds my heart raced. I had a few more incidents similar and then they started changing somewhat. One I just felt like I was going to pass out and felt confused with minimal increased heart rate. My doctor ordered alot of tests and two weeks ago I underwent an EP study on my heart. They said I had av-node re-entry and did an ablation to fix my heart. Okay so I also had an eeg wich showed a possible left temporal lobe focus and a right paracentral focus. Since right before my heart procedure and since I have had episodes where I lost my speech, literally unable to speak for approx thirty seconds or so. My neurologist put me on Keppra 500mg daily to start with. Any feed back would be greatly appreciated as this all very new and confusing for me. Oh also experiencing ringing in my ears atleast once per day, lasts from minutes to an hour sometimes.
Just diagnosed with partial seizures
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Hi sara, welcome to the forum. :hello:
Yeppers, those sound like partial seizures. It's really amazing just wide the spectrum is for the seizure experience.
I don't know exactly what kind of feedback you were looking for, but if you ask questions, we'll do our best to answer them.
Yeppers, those sound like partial seizures. It's really amazing just wide the spectrum is for the seizure experience.
I don't know exactly what kind of feedback you were looking for, but if you ask questions, we'll do our best to answer them.
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Hello Sara - I would contact your Doctor in regards to Keppra, the ringing of the ears, if I may ask, does it occur after you take the Keppra? If so - notify your Doctor please.
As far as what I'm gathering from your posting, what you are describing is sounding as partial seizures.
Welcome to the board Sara!
As far as what I'm gathering from your posting, what you are describing is sounding as partial seizures.
Welcome to the board Sara!
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Everyone reacts to AEDs (anti-epileptic drugs) differently. They work for some people and not for others. There is always a bit of trial and error finding a drug (or drug coctail) that offers good control without debilitating side effects.
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I had problems with Trileptal and Keppra - had to be taken off
of both of them but like Bernard posted above, everyone reacts
to the medications differently. What works for others, may not
work for you, but what works for you, may not work for others!
It IS a trial and error and it takes time and patience to find the
"perfect" dosage. If you are not familiar with it, they call it a
"cocktail" - a slang for a AED (antiepileptic drug combination).
Just hang in there and be patient and stay in touch with your
doctor and eventually you'll get there!
Oh boy! My neurologist wants me to start lamictal now. Does anyone know why they want to treat simple partial seizures? It seems to me that dealing with a thirty second episode once or twice a week is easier than dealing with the side effects of the meds.
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There is always a need to balance the side effects with the seizure control benefits. The main problem with letting seizures go uncontrolled is that the pattern can get worse (frequency, intensity and even type of seizure can change).
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Sara - there are many reasons why seizures are needed to be
brought under control. Many times one can have seizures and
not even realize it. To you, it might seem like you're only having
1 or 2 a month, but to everyone else, you could be having 20-30
a day! (that's just an exaggerated example).
The other problem is, they can generalize and lead to bigger
problems if they're not controlled, leading to brain damage,
SUDEP,
and if you're driving ... can spell .... T-R-O-U-B-L-E!
My Grandfather once used to say
"Better deal with the she-bangs now while you're at it, than
paying a heavy price later!"
(I never did find out what a she-bangs was - but I get the idea)
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I went untreated for many years and started first with just a few auras , simple partial seizures to auras simple partial seizures then complex partial seizures they sometimes can change having some where my whole body went weak then stiffened and couldnt move felt like i was going to pass out ...... I have been on aeds for a year and three months something like that.... I agree they can get worse if left untreated ..... :agree:
the neuro and I are finding that they are bad around my monthly even being on keppra ive not had a seizure for a while but ive had auras quit a few only around my cycle though....
start writing a seizure diary keep track of your feelings good or bad if you have a day when you feel off write it down then you and your neuro can figure out maybe what your seizure triggers are....
love
angel
spinnymommy
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Thank you Sara for asking this question. It is one I've wanted to ask for a while now.
stringbean
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Sara,
I also went many years before being diagnosed with E, I was having partials and complex partials that were being treated as panic attacks, even after after a grand mal after the years of the Partials and Complex partials it still was at least about 5 years before they finally found that they were seizures not panic attacks.
I was only on dilantin for quite awhile, which only controls Grand Mals, If I had been put on a seizure med to help control the others then possibly , they would have been able to get the others more controlled, I ended up having to have brain surgery to remove a large part of my left temporel lope due to the damage from the uncontrolled seizures and so many of them and I am still on a lot of meds and having seizures.
So yes, taking the meds is very important, mine started out being very mild and then as time went by with them being untreated they did go from auras, partials then complex partials.
Tammy
I also went many years before being diagnosed with E, I was having partials and complex partials that were being treated as panic attacks, even after after a grand mal after the years of the Partials and Complex partials it still was at least about 5 years before they finally found that they were seizures not panic attacks.
I was only on dilantin for quite awhile, which only controls Grand Mals, If I had been put on a seizure med to help control the others then possibly , they would have been able to get the others more controlled, I ended up having to have brain surgery to remove a large part of my left temporel lope due to the damage from the uncontrolled seizures and so many of them and I am still on a lot of meds and having seizures.
So yes, taking the meds is very important, mine started out being very mild and then as time went by with them being untreated they did go from auras, partials then complex partials.
Tammy
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RobinN
Super Mom
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We have tried four so far Sara. I am in agreement with you. The side effects were not acceptable to us.
We are approaching it through nutritional changes, and hormones. My daughter does have tonic clonic seizures, which can't be ignored. However, they are down greatly without any side effects since stopping all medicine. So... keeping a journal is very important. Finding your triggers are really the only clue.
Hello! i've taken many different epileptic drugs. Trileptal and Lamictal gave me double vision after taking them for a while. Topamax made me lose weight (over 20lbs), very lethargic, and i couldn't concentrate. Depakote upset my stomach,with that medicine they constantly have to test and monitor your liver because it affects it. Also if you ever want to have a child you can't be on that medicine because it kills the fetus. I take Keppra and neurontin now and i seem to be ok. I never know when i have my seizures,they just happen. I just found out yesterday i'm a candidate for temporal lobe surgery. I don't know if i'm going to go through with it though because it messes with memory. Take care and i wish you the best of luck!