Who Doesn't Have Some Control Over Seizures?

[Zoe]

Does anyone in this forum actually believe that he or she can do nothing to prevent a seizure or ward one off when it starts? Many people find there are things they can do or situations they can avoid to prevent seizures. What works for you?

 

[Meetz1064]

I have mine

in my sleep, and I have no warning. I do use diet and meds to control/prevent mine....and it has been over 5 years now since an uncontrolled seizure. But, I'm never aware of mine when they start.....they are VERY VIOLENT t/c's that scare most medical personnel. I tend to break things, (including my own bones at times) during them. And I'm not aware until well after the fact. Usually about 12 to 24 hours after.......

I also tend to stay away from Jumbotron lights as they bother me for some reason that I can't pin down....

 

[Zoe]

You make two very good points; that you don't have to have an aura or be aware of going into a seizure to find ways to control them.

The Jumbo Tron developed by Sony uses fluorescent lighting which may trigger migraines or seizures in people who are photo(light) sensitive. On some level you are aware of what may trigger a seizure for you and you are taking control by avoiding that possible trigger. Doesn't that show the value of trusting your instincts? :tup: Here's an informative article about photosensitive seizures from the National Epilepsy Society in the UK:

NSE : Information on epilepsy : Photosensitive epilepsyNational Society for Epilepsy logo - click for homepage · Text-only version ... The risk of this happening may be reduced by using non-fluorescent lights. ...
www.epilepsynse.org.uk/pages/info/leaflets/photo.cfm

A google search on "fluorescent lights" "epilepsy" will give you about 14,000 links to explore.

in my sleep, and I have no warning. I do use diet and meds to control/prevent mine....and it has been over 5 years now since an uncontrolled seizure. But, I'm never aware of mine when they start.....they are VERY VIOLENT t/c's that scare most medical personnel. I tend to break things, (including my own bones at times) during them. And I'm not aware until well after the fact. Usually about 12 to 24 hours after.......

You may also want to do a google on the name of your drug "drug" "heart". My more violent seizures when I had them usually happened with no warning in my sleep. They involved convulsive syncope and the heart stopping caused to vomit into my lungs and get aspiration pneumonia from choking. I nearly died a couple of times from it. The brain surgery didn't cure them but they stopped after I got off the AEDs. For that type of seizure, the drug may have been what triggered them.


I also tend to stay away from Jumbotron lights as they bother me for some reason that I can't pin down....

 

[Crazy Monkey]

I honestly feel I have no control over my absence seizures because sometimes there isn't a known trigger present, they can happen any minute of the day without warning. I know to expect them in certain circumstances but I cannot tell exactly when. When I am walking to work first thing in the morning I have many seizures as I am still half asleep and I know to expect them late at night, the other day I walked into the doctors surgery and for some reason they had a bright floodlight pointing at the entrance, this caught me by surprise and I had a seizure straight away. I appear to have several triggers, some that I am still discovering the latest being noise in the office and reflections on the glass in pictures hanging on the wall.

One thing I have worked out, is that when I am concentrating on something really hard I do not tend to have seizures, like horse riding, riding on the back of a motorbike or even simple things such as pouring boiling water from a kettle.

I find that my absence seizures can happen at the most embarrassing of times and there appears to be nothing I can do about it, coz I get no warning I don't get time to prevent them.

 

[Zoe]

Ah, but give yourself credit, when credit is due, learning to avoid the triggers, by concentrating on something else, avoiding the light, and by taking your meds and using diet, you are taking control and preventing them. How many more seizures would you be having if you quit using meds, the diet, and sat in front of Jumbo Trons? Learning to identify and address other triggers is the challenge.

I honestly feel I have no control over my absence seizures because sometimes there isn't a known trigger present, they can happen any minute of the day without warning. I know to expect them in certain circumstances but I cannot tell exactly when. When I am walking to work first thing in the morning I have many seizures as I am still half asleep and I know to expect them late at night, the other day I walked into the doctors surgery and for some reason they had a bright floodlight pointing at the entrance, this caught me by surprise and I had a seizure straight away. I appear to have several triggers, some that I am still discovering the latest being noise in the office and reflections on the glass in pictures hanging on the wall.

One thing I have worked out, is that when I am concentrating on something really hard I do not tend to have seizures, like horse riding, riding on the back of a motorbike or even simple things such as pouring boiling water from a kettle.

I find that my absence seizures can happen at the most embarrassing of times and there appears to be nothing I can do about it, coz I get no warning I don't get time to prevent them.

 

[alivenwell]

For me, stress management is the key. If I don't do that on a regular basis, then I'm doomed.

 

[Duke]

What about the seizures were you know what the trigger is but can't prevent the trigger from happening. With me sometimes it's loud noises, unexpected quick movments from someone or something close by. These are the things that cause me to have myoclonic seizures, just small jerking movments in my legs and arms. My limbs will just jerk at random till' I calm down. I mean you can't control every thing around you all the time. As far as the complex partial seizures I have, still haven't pinned down what triggers those seizures.
Duke

 

[Zoe]

The noises and anything that startled me used to trigger my seizures. Thinks like someone knocking on the door, the phone ringing, or a fire alarm going off would do me in.
There's a whole branch of behavior therapy that can deal with this; the process is called desensitization and is one of the approaches I used when learning to control my seizures on my own. Once we've become "sensitized" to something, like noise, it takes very little of it trigger a seizure. In this way we have learned, been conditioned to have a seizure, just like Pavlov conditioned a dog to salivate at the sound of a tuning fork. Desensitization is a process of unlearning this conditioning or learning some other behavior that cancels it out. Over time, you would learn to react differently to noise, not be so sensitive to it that it triggers a seizure. You can find quite a bit of info on desensitization and epilepsy on the web. You might want to find a behavioral psychologist who could help you develop some strategies to become less sensitive to noises or other triggers you know about.
Have you considered whether the small jerking movements might be due to rapid breathing or to a drop in you calcium level? Slow breathing might help you here or correcting any mineral or electrolyte imbalance. Two that come to mind are magnesium and calcium.
Case Based Pediatrics Chapter... myoclonic seizures are composed of rapid, flexion twitching or jerking movements. ... Hypocalcemia and hypomagnesemia cause increased depolarization by ...
www.hawaii.edu/medicine/pediatrics/pedtext/s03c09.html
Try a google search on "hyperventilation" "jerking movements"

What about the seizures were you know what the trigger is but can't prevent the trigger from happening. With me sometimes it's loud noises, unexpected quick movments from someone or something close by. These are the things that cause me to have myoclonic seizures, just small jerking movments in my legs and arms. My limbs will just jerk at random till' I calm down. I mean you can't control every thing around you all the time. As far as the complex partial seizures I have, still haven't pinned down what triggers those seizures.
Duke

 

[Zoe]

I just wish I could think to do it before I've gotten overloaded!!

For me, stress management is the key. If I don't do that on a regular basis, then I'm doomed.

 

[RobinN]

Zoe you are the best! You make is so easy to understand.

 

[ashmstng]

Thanks Zoe for your Help. For me I never knew what caused mine. No auras. I have been trying to figure that for awhile. But since I had the brain surgery no seizures yet. I am taking it day by day.

 

[Duke]

Zoe,
thanks for all the information. You mentioned something about fixing a mineral or electrolyte imbalance, magesium and calcium. Would taking a multi - vitamin take care of that ? Also, I drink ice tea at almost every meal, sometimes even at breakfast. Would cutting out the tea help ?
And thanks for the info desensitization, I'll google that and read up on it.
Thanks,
Duke

 

[Zoe]

I sure hope the surgery worked for you! It will still be very important not to do things that can lower your seizure threshold, such as drinking alcohol, not getting good sleep, the usual stuff. What a relief you must feel having some freedom from seizures. Great!
:mrt:

Thanks Zoe for your Help. For me I never knew what caused mine. No auras. I have been trying to figure that for awhile. But since I had the brain surgery no seizures yet. I am taking it day by day.

 

[Zoe]

Duke,
Cuttting tea out might make a HUGE difference in your seizures.
Tea is a diuretic (makes you lose your fluid) which can lower your seizure threshold by causing you to flush out electrolytes. The caffeine in it can also
lower the seizure threshold. I don't know that taking supplements alone could correct any imbalance created by drinking tea. Try these google searches.
"tea" "seizure threshold"
"tea" "electrolytes" "seizures"
"tea" "caffeine " "seizures"

You reduce the risk of having seizures by eliminating things that can trigger them.
Post your thoughts on what you learn about desensitization. Its interesting and helped me a lot.

Zoe,
thanks for all the information. You mentioned something about fixing a mineral or electrolyte imbalance, magesium and calcium. Would taking a multi - vitamin take care of that ? Also, I drink ice tea at almost every meal, sometimes even at breakfast. Would cutting out the tea help ?
And thanks for the info desensitization, I'll google that and read up on it.
Thanks,
Duke

 

[joey]

i sometimes can feel a seizure about to happen and when i have that feeling its almost a sure thing i will have one. but i have had the feeling come on and then taken a valium or two than it would stop me from having a seizure. i have no prescription for valium but my friend gives them to me. but you should ask your doctor before trying anything.

 

[Belinda5000]

With most of my seizures I don't have aura's. So I have no warning there coming on. MY VNS doesn't always kick in either to take care of my seizures.
So there's nothing I can do to prevent most of my sz's.:soap:

 

[Zoe]

With or without a working VNS you do still have some control over your seizures and are using control by the decisions you make on a daily basis just like the rest of us.
These are some of the known links to, or triggers for seizures;
poor sleep
caffeine
low levels of vitamin D
low levels of B12
Low levels of folic acid
Low levels of magnesium
alcohol and recreational drugs
Alcohol, recreational drugs and epilepsy | Epilepsy ActionIt is a fact that alcohol and, increasingly, recreational drugs, ... Those with a low seizure threshold are more likely to experience seizures than those ...
www.epilepsy.org.uk/info/sportsandleisure/alcohol.html

stress
hyperventlation
Whether or not you have a VNS, any of the factors above can lower your seizure threshold. Addressing those factors can thus serve to reduce your risk of seizures, whether or not your VNS is working properly.
Even if your VNS were working great, taking amphetimines or doing other things that can trigger seizures will give you less control over them. If you know you have a low seizure threshold and you do things you know increase your risk of seizures, you are controlling your siezures by doing those things that lower your seizure threshold. That's a challenge all of us with seizure disorders face.
onder:

With most of my seizures I don't have aura's. So I have no warning there coming on. MY VNS doesn't always kick in either to take care of my seizures.
So there's nothing I can do to prevent most of my sz's.:soap:

 

[Zoe]

You have other options for stopping a seizure in progress besides the valium. Have you read the book, "Epilepsy: A New Approach"? There are some good strategies in there that might help you too.
:mrt:

Amazon.com: Epilepsy: A New Approach: Adrienne Richard, Joel ...Epilepsy: A New Approach combines Adrienne Richard's own inspiring story of overcoming a debilitating condition with Dr. Reiter's up-to-the-minute medical ...
www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/0802774652

i sometimes can feel a seizure about to happen and when i have that feeling its almost a sure thing i will have one. but i have had the feeling come on and then taken a valium or two than it would stop me from having a seizure. i have no prescription for valium but my friend gives them to me. but you should ask your doctor before trying anything.

 

[hawke86]

I have had two surgeries to help control my seizures. The first one was a lobectomy and the second one was when I had the VNS surgery. I have taken all sorts of seizure medications. I still have seizures sometimes. One of things I have to try to do is get plenty of rest.

 

[Zoe]

I have had two surgeries to help control my seizures. The first one was a lobectomy and the second one was when I had the VNS surgery. I have taken all sorts of seizure medications. I still have seizures sometimes. One of things I have to try to do is get plenty of rest.

That's a pretty good strategy sometimes. I used to take naps which would sometimes keep a seizure from happening if there was enough warning for me to go and lay down.