Tried 4 drugs for focused staring spells

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I have tried 4 epilepsy meds for focal staring spells that last for hours. Unfortunately none have helped and the dr. is talking about surgery if this would help. My seizures are located in the temporal lobe I think as this is where all my EEGs show.... Although they haven't caught a staring spell on an EEG yet. I am supposed to have a portable EEG at my home in the next week. This will determine the type of seizure and it's location. Just curious about surgery and what others experiences with this kind of seizure and the best treatment for it.
 

skillefer

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Hi Sally! Has your neuro tried combinations of meds? Have you tried to figure out what your triggers are? I haven't had the surgery, and wouldn't qualify for it. But I have read posts from several people. The surgery is not 100% successful in seizure control. Some people have had parts of the brain removed, and gone for a while with no seizures, only to have them come back. I've even read posts where people ended up having seizures due to scar tissue that grew on the brain from the surgery. If I were you, I'd try finding out my triggers first, and making any necessary adjustments to lifestyle first. To me, surgery seems like an awfully big step. But, if I had tried everything, and my seizures still weren't under control, and I had spoken to an epileptologist and visited an epilepsy center, and still wasnt' under control, then I'd consider surgery...but for me, it would be a last resort. Again, I'm not in your shoes, but I'd try to make the least physically intrusive intervention as possible first. If you arent' or haven't kept a journal for trying to figure out triggers, write down the following every day:

1. Food and drink (what, how much, and what time....)
2. sleep (how much each night, and whether it was interrupted.....this is important because some people have sleep apnea and the lack of oxygen triggers their seizures. )
3. Stress(any stress you are under, including physical illnesses like flu, and how you deal with your stress)
4. Odd feelings (odd smells/sounds/tastes/sights/feelings, migraines, queasy stomach, etc...when and how long they last.)
5. Seizures (when, and how long they last, what you were doing prior....)
6. meds (OTC and prescription, as well as herbal supplements and vitamins that you are taking...how much and when.)
7. Time of the month. (When was the first day of each period and the number of days in your cycle...Some women have catamenial seizures, they are triggered by fluctuations in your hormone levels and can be treated with hormone creams.)

Your writing all of this down to see if you can establish a pattern....to figure out if something or somethings in particular make you more likely to have a seizuer...For example, many of us find that the following make us mroe likely to seize:
1. lack of sleep
2. stress
3. too much caffeine/low blood sugar

Other conditions that may effect your seizure level would be:
1. diabetes/hypoglycemia (is there a history of it in your family?)
2. sleep apnea (makes it hard to get enough oxygen and enough uninterrupted sleep)
3. flus and colds (body's seizure level is lowered during times of illness...and the use of some OTC meds doesn't help.)

Hope this helps!

PS= If you realize that you have some things that might be triggering your seizures, then you might want to do the following to raise your seizure threshold:
1. Make sure that you get at least 7 hours of uninterruped sleep every night.
2. Eat a healthy diet .
3. Quit taking in caffeine (these would be coffee/tea/energy drinks....and even chocolate if you eat enough of it...)
4. Find a healthy way of dealing with stress (yoga, exercise, meditation, tai chi, prayer, writing, painting, etc....)
5. Cut out as much processed food (and sugary food) as possible in your diet.
 
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Thank you for all the helpful info!

Actually, I just got out of the hospital today and had a 5-day EEG and had seizure activity on it but not the typical seizures (staring spells) I have ALL the time. I felt like I was waiting to have a staring spell. It was horrible and then I was on surveillance at all times, etc. The doctors insisted on doing an in-hospital EEG and the ambulatory was second choice. The hospital just didn't do it for me... No triggers there. My triggers are mainly stress and caffeine and alcohol. I get very stressed sometimes and I am a worry wart you could say. My seizures usually happen at night or in the late afternoon, rarely happening in the morning. Even good stress can cause them. For instance, simply being very busy during the day with alot of things to do can cause them.. Heck, I've even gotten one after reading or drawing or painting (I am an artist). Then there are days where they seem to come from nowhere. There is a pattern though and I usually don't go for longer than 4 or 5 days without having one. Some friends and family think I should be able to control them and I would like to but their attitudes about it make them worse. I got a staring spell tonight shortly after I came home from the hospital. Wouldn't that be my luck? Anyway, thanks again...
 

Belinda5000

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Hi Sally,

I use to have starring sz's when I was a kid but I grew out of them.
I took everything on the market when I was a kid nothing helped.
I've had probably around 100 EEGs in my time for my seizures.
It definitely helps to know what your triggers are.
Belinda
 

Bernard

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Hi Sally, welcome to the forum. :hello:

I have tried 4 epilepsy meds for focal staring spells that last for hours.
If they last for hours, then they would be considered status epilepticus and cause for heightened concern.

I would normally recommend folks investigate diets, neurobehavioral therapy techniques or neurofeedback when AEDs don't help, but I'm not sure that any of them would help you immediately (they are still worth investigating for the long term).
 
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