Who Doesn't Have Some Control Over Seizures?

[joey]

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 really dont read much about it i go for easy aproach i hate dealing with it.along with epilepsy i have lazylepsy

 

[Zoe]

i really dont read much about it i go for easy aproach i hate dealing with it.along with epilepsy i have lazylepsy

If only magic was real, huh?

 

[Belinda5000]

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:

It's impossible to stay stress free Staying out of the crowds trigger my seizures is a lot easier.
I get plenty of rest I take my meds.I've had brain surgery and I do have a low seizure threshhold. Anything can bring my seizures on .
I can do everything I'm suppose and still end up in the E/R on days.
Belinda

 

[Zoe]

It's impossible to stay stress free Staying out of the crowds trigger my seizures is a lot easier.
I get plenty of rest I take my meds.I've had brain surgery and I do have a low seizure threshhold. Anything can bring my seizures on .
I can do everything I'm suppose and still end up in the E/R on days.
Belinda

Yes, but keep things in perspective. I had brain surgery for seizures that failed too. Staying out of crowds, like you said, is one way for you to reduce the risk of having a seizure. For each of us the situation is unique. We have to find what will prevent, stop, or reduce the risk of having a seizure for ourselves, and this is very INDIVIDUAL. The more ways you learn to lower your risk of having a seizure, the more control you will gain over them. We all know that one way to avoid drug addiction is not to use addictive drugs. By the same token, one way to prevent seizures is by not doing things you know will bring them on, which you are doing. Give yourself credit for what you are doing to help yourself.:clap:

 

[Belinda5000]

Zoe,

So I would be in my house afraid to leave it because I might I have a seizure.
I don't have many triggers why don't ppl believe me.
I'm not staying home 24/7 heat&humidity can bring on my seizures.
I live in Georgia and I have a life.I have other appts with other docs to see.:bigmouth:

Belinda

 

[Zoe]

Zoe,

So I would be in my house afraid to leave it because I might I have a seizure.
I don't have many triggers why don't ppl believe me.
I'm not staying home 24/7 heat&humidity can bring on my seizures.
I live in Georgia and I have a life.I have other appts with other docs to see.:bigmouth:

Belinda

Whoa! :woot: We had a misundertanding here! :rock: We need to clarify the difference betweeen having a warning and trigger. A trigger is what sets off a seizure- as you wrote about the heat and humidity. No, you can't or don't want to stay home to aviod a seizure. No one is suggesting that.
There may be things you can do when going out on a hot humid day that will make it less likely that you will have a seizure in the heat and humidity.
Finding out what that may be is then the challenge for you. It is different for everyone.
The point is to look at your situation and find ways to manage that work for you. No one suggested that you don't have warnings, that was a complete misunderstanding.
onder:

 

[Belinda5000]

I know what an aura is and I don't have them very often.
I'm intractable.med resistant and allergic to meds.
do you think they could bring on my seizures?I know so sometimes.
I'm not addicted to any drugs, I don't drink .
When you don't drive or have some one to drive you around you have to make do do .
So I take public transportation I walk 15 minutes get the station.
I've just been lucky getting home in the heat&humidity and I'm a fast walker.
hen my sz's are acting up I wear a helmet.:woot:



Belinda

 

[Zoe]

I know what an aura is and I don't have them very often.
I'm intractable.med resistant and allergic to meds.
do you think they could bring on my seizures?I know so sometimes.
I'm not addicted to any drugs, I don't drink .
When you don't drive or have some one to drive you around you have to make do do .
Belinda

My seizures were diagnosed as intractable too. I had to live in housing for disabled and seniors for ten years. I had no family to turn to, couldn't drive and was having several seizures a day, mostly partials. I could not cook most of the time and was exhausted from the seizures, lack of quality sleep, and the stress from the never ending uncertainty of when the next seizure would hit. If I was too wiped out from my seizures to cook I just had to go hungry, many many times.
We all "make do" and adapt as much as possible and look for opportunities to make things better, one step at a time. Have you looked up your drugs and any vitamin or mineral problems they might trigger that could lower your seizure threshold? Three that come to mind are vitamin D, folic acid, and vitamin B1. We just have to keep searching for things that will help us.
:mrt:

 

[JanieNut]

I am learning my triggers as fast as I can. Photosensitive is an inadequate word for it. There are so many other ways to trigger a seizure when I see patterns, certain color lights (neon is the worst because it is bright and flashes) , Computer Monitors, Video Games that show you a view as if you were the person are bad – crazy bad for me, on and on…..

I get auras - I see light shadows – rarely are they the ‘ladders’ but more like outlines of light and shadows on objects that will get worse and worse until the CPs start in earnest - if I take a pain med early on - like Joey - it really does reduce the intensity of the following CP for me.

I have lots of food triggers and have eliminated many. Wine, or any drink, is completely out of my life. I really try to avoid processed meats and MSG is a sure way to be crying in pain from the migraine that will follow the CP I will have for sure from that. Forget any product that says ‘Diet’ – that means a CP for me for sure.

One trigger is sunlight reflecting through trees. Another is sunlight off of water – but I cannot avoid that one. I have a Koi pond and I LOVE my Koi. So I go out there in the evening. Less reflections. Less Stress - Looking at them just melts it away.

Driving up and down in the hills and mountians will trigger CPs. This one I actually asked my neuro about because it sounded silly - but he confirmed it. I drive through hills and valleys with trees in the sunlight for 45 minutes to get to work, Of Course. But, I actually don't drive much because traffic bothers me too- I am blessed to have a daughter that works at the same company and lives a mile away from me - so she drives me to work most days. All 4 of my children drive - so I am always making one of them 'go with me' to avoid driving.

And for some reason my family thinks that I have seizures if I WASH DISHES. Don’t know where they got that idea…….

 

[Zoe]

Even the seizures triggered by washing dishes is not so far fetched with the disorder. When I still had them people talking loudly on the city bus would trigger a seizure. Another one was when I was paying for something in a store. Very typically, I would hand the cashier the money and for some reason the movement when the clerk handed me the change would often trigger a seizure. I would get real confused and just be standing there frozen. Then I would be disoriented when I came out of it. In my neighborhood I explained to the store clerks I was having a seizure when I acted like that, so they didn't freak out when it happened. I usually had to go right home and sleep afterwards.
If you haven't done it already, do a google on "reflex epilepsy" and any of the words you are coming up with as triggers, "reflex epilepsy" "lights", "reflex epilepsy" "neon" "reflex epilepsy" "video games" and so on. I did come across reports of them being triggered by reading or by doing math in some people.
One woman I met found she could control her seizures by using different color lenses in various situations. I think she used blue in the grocery store as the flourescent lighting triggered them, another color when watching television, etc. She just experimented 'til she found what worked for her. Have you tried this? Some optomotrists or even an opthamologist might have some information on this kind of light and pattern sensitivity. Wouldn't hurt to ask. Something else that may help is to learn the slow breathing routines and use them when you are in a situation that is likely to trigger a seizure. This may work to stop one before it becomes full blown and eventually train your nervous system not to react to the trigger anymore. One step at a time, and it sounds like you have the lead in the race.

I am learning my triggers as fast as I can. Photosensitive is an inadequate word for it. There are so many other ways to trigger a seizure when I see patterns, certain color lights (neon is the worst because it is bright and flashes) , Computer Monitors, Video Games that show you a view as if you were the person are bad – crazy bad for me, on and on…..…….

 

[Belinda5000]

computer monitors use be really good at sending me into seizures.
Our monitor is glare screen and that has cut down on my seizures on the computer quite a bit.



Belinda:banana::agree:

 

[Zoe]

I tried tinted and polaroid lenses for the computer screen, which helped too.
op::agree:

computer monitors use be really good at sending me into seizures.
Our monitor is glare screen and that has cut down on my seizures on the computer quite a bit.



Belinda:banana::agree:

 

[Tralee A]

Nice to know i'm not the only one who has no control over thier seizures at the moment. i know lights that are around the "specials" in stores dont take long to give me a seizure. i have partial complex and i only know a few triggers (the smell of rosemary or cinnimon) and flashing lights. at times when i'm a bit up tight and travelling in a car of a night the flashing of the lights from the on coming cars will set one off. i dont have any warning...or if there is its about 2 sec before i go into it. most of the time i just freeze up/really tense up and one hand goes flat out tucking my hair behind my ear, or wiping my mouth (i started doing that when i had my first few seizures coz i found i drooled really bad and became self concious of it) but "zoning out" freaks a few people out and not being able to talk. my brother is pretty relaxed about it ("leave her. she'll be fine" at least he knows there isn't anything they can do til i'm out of it.) mum is cool calm and collected...so is dad...til i'm out of it. then its wrap me up in cotton wool.
i'm working on finding something that will be calming and is easy to do. i know playing my piano calms me down but i cant exactly cart a piano around with me. suggestions are welcome tho

 

[Molly97]

I used to think that my seizures "came out of nowhere." I thought I was doing everything possible to control them, and wham! there they were.
I found out that I am very food sensitive. When I first came to this site in April, Bernard steered me to the GARD. I have read all dogtor j's papers and have put into practice the diet. It works. I have far fewer seizures "out of nowhere" now. I am very strict with the diet, and when I have a seizure, the first thing I ask myself is "What did I eat last?"

On the other hand, as someone else mentioned here, I too have trouble with light patterns through trees, riding up and down hills, and bumpy roads. Can't always control these triggers. I just close my eyes(I don't drive)to reduce the visual effects.

Someone else mentioned washing dishes. That's happened to me too, numerous times. I have found it has to do with the temperature of the water; turn down the hot water!

 

[Zoe]

Hi Molly,

The "out of nowhere" seizures may be from a change in your breathing and heart rate, which can be triggered by any of the things you mentioned, food sensitivities, lights, movements--like washing dishes. When something irritates or startles it can trigger a reaction that may set the stage for having a seizure. This may be like an over-reactive startle reflex which often seemed to be the case for me. As I learned to change my response to the kind of things that might trip my seizures, like making myself go calm when I felt I was getting suddenly anxious or afraid, helpe re-condition my responses so the seizures became less frequent and easier for me to consciously control. I'm glad the GARD diet is helping you too-gut reactions being also possible seizure triggers.

 

[RobinN]

I read a post on another list, where a mother was sharing that her daughter after meds didn't work, was put on a GFCF strict diet and ALL of her seizures stopped. She knows that when there are eye flutters now it is due to a nutritional infraction. There is proof that this therapy works for some.

 

[Zoe]

Right! And another to add to that is taurine!
:mrt:

I read a post on another list, where a mother was sharing that her daughter after meds didn't work, was put on a GFCF strict diet and ALL of her seizures stopped. She knows that when there are eye flutters now it is due to a nutritional infraction. There is proof that this therapy works for some.

 

[RobinN]

That is one high on Rebecca's list. She has taken it for almost two years.

 

[darkmarkshark]

Well lets see I could shut myself in a dark room and never come out- that would prevent me from experiencing most of my triggers. But I have some desire to socialize and experience sunlight at times so I don't lock myself up to never come out.

Diet does help as eating peas and carrots for dinner cause me to have bad seizures at night

 

[RobinN]

Well lets see I could shut myself in a dark room and never come out- that would prevent me from experiencing most of my triggers. But I have some desire to socialize and experience sunlight at times so I don't lock myself up to never come out.

Diet does help as eating peas and carrots for dinner cause me to have bad seizures at night

I read a bit of sarcasm in your post. The last sentence especially.

Have you done any reading on nutrition and its contribution to seizure control?