Just came back from a trip with plenty of time to contemplate my seizures

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Molly97

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My husband and I took a three day motorcycle trip around the Branson and northern Arkansas area. Beautiful riding. We talked quite a bit about my seizures and I just wondered if anyone else here has similar experiences.
We were riding along the Buffalo Canyon and suddenly, there was the vista. I went into visual overload; it was like being slammed in the face with something huge. I had to close my eyes, and when I reopened them, I could enjoy the view. While we are riding, I notice from time to time that the scenery gets this impressionistic look to it, then it starts jiggling. If I go ahead and close my eyes, it goes away. Again, while we are riding, going down a bumpy road can trigger a seizure. He knows to stop the bike and let me off; I lay down on the roadside until it passes. This can happen in the car too.
We hadn't ridden since 2001 when we had a disasterous vacation. It felt really good riding again.
This sounds like I have constant seizures on the bike; I don't. The same visual problems I have on the bike I have had in the car.

On another note, I read somewhere about being delivered by forceps could cause seizures as an adult. I can remember as I was growing up, if my grandmother thought I was overextending myself, she'd always tell me that after all, I had been delivered by forceps. Like it was a disease. Makes me wonder now if I had seizures as an infant. The only people in my family still living wouldn't know. Would they be able to tell from an MRI; I've never had one. Only a lot of inconclusive EEG's. One doc got so upset because the reading changed sides from the previous EEG. He couldn't explain that; actually said the last doc didn't know his right from his left. Oh well.

The GARD seems to be doing all right. I get into it more and more.
I agree with some of the others here that there are more ways to go than just meds.
 
Molly97 said:
The GARD seems to be doing all right. I get into it more and more.
I agree with some of the others here that there are more ways to go than just meds.
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This is really good to hear.
Have you also looked into magnesium and Omega 3 as supplements?
 
I definitely have visual overload. Especially when there are lot of things..such as stores with alot of items..alot of light, my head will feel weird and I just need to close my eyes and block it all out. Even going down stairs can bother my vision and head. Strange I know.. but I've always mentioned this to Drs. prior to being diagnosed.

Michelle
 
I've only just heard about the magnesium and omega 3's from some other threads on this forum. How do you know how much to take without the expense of blood tests? Right now, with utilities going up and of course, the gas prices, our budget is stretched.
A few years ago, I took Bcomplex because I heard that was good for you. I took the recommended dosage on the bottle. It triggered my seizures big time. I talked to the doctor about it, and he had me take it every other day; still was a problem. So I am wary.
 
Molly97 said:
My husband and I took a three day motorcycle trip around the Branson and northern Arkansas area. Beautiful riding.
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Sounds fun. :)

Molly97 said:
... While we are riding, I notice from time to time that the scenery gets this impressionistic look to it, then it starts jiggling.
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The temporal lobe is usually associated with surreal/distorted perceptions of reality. Sounds like you might be photosensitive to a degree (though not in the usual sense of flashing lights - more in terms of visual stimuli). You should mention this to your neuro IMO.

Molly97 said:
Would they be able to tell from an MRI; I've never had one.
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An MRI would be able to spot scar tissue or other physical abnormalities in the brain which may or may not be focal points for seizure activity.

Molly97 said:
How do you know how much to take without the expense of blood tests? Right now, with utilities going up and of course, the gas prices, our budget is stretched.
Click to expand...

You can always just experiment. Just keep a journal/diary to monitor any changes. I wouldn't use more than what's recommended on the bottle/packaging without talking to a doctor first.

Molly97 said:
A few years ago, I took Bcomplex because I heard that was good for you. I took the recommended dosage on the bottle. It triggered my seizures big time. I talked to the doctor about it, and he had me take it every other day; still was a problem. So I am wary.
Click to expand...

Some of the B vitamins help with seizure control, others can provoke seizures. It's best to take the individual B vitamins that you need rather than a complex (which might have too much of the ones you don't). It's similar to the Omega oil supplements - don't take 3-6-9 formulations, you want just the Omega 3 (not Omega 6).
 
Thanks Bernard. Even though I have had this onslaught of seizures for the past ten years, I feel like I'm finally able to focus and think clearly enough to be my own advocate. I've been med free for over a year now, and it's been only in the last 6 months that I feel I have my wits about me. I feel like I'm just now in the "discovery" phase in learning about my seizures. I am hopeful in being able to do something about them without being drugged up and drug out.
 
I agree with Bernard....sounds like you're photosensitive. I've heard that a certain kind of sunglass lens can help with photosensitive people....if I remember right it's blue polarized lenses. You have to be careful though...alot of the lenses that look blue and are polarized are actually grey lenses with a blue tint put over them. You might want to check it out. They claim it can cut the number of seizures down by 50% or more....I haven't tried it, so I can't say.
 
Hey Skillefer,
That is a good idea. I'm gonna check that out.
When we're riding, I wear polarized sunglasses(cocoon style)over my glasses and then
a polarized, grey-tinted faceshield. I gotta try something different because these two together can give some really weird effects to the scenery at certain times of day. The faceshield is not dark enough to be used by itself during the brightest time of the day.
My husband does a similar setup(sunglasses and tinted faceshield)and doesn't get the weird effects I do. I know that on cloudy days as well as bright days, I wear the cocoon sunglasses even if I just go out back to water or work in the yard. I also have anti-glare on my glasses. Anything to cut down the brightness.
 
I started my daughter on the dose on the bottle. I read up on the side effects of each of the vitamins and minerals that I give to her. I was unable to find a doctor that was willing to work with me on this aspect of her care. I tried nutritionists, and was told they would not work with me. I have approached her doctors, but they seem reluctant, I suspect due to lack of knowledge. I did go to one doctor that is well repected in womens health back when we were in the trenches fighting, and he gave me a list of supplements that he would recommend for brain health. Unfortunately he is $350/hr, so I have taken that list and worked around it. A UCLA pharmacist told us she did not even know what Taurine was. ...HUH?

Doing an incredible amount of research, I am feeling very comfortable these days with what I am supplementing with. I tweak it every now and then but I keep very close watch and good notes. Magnesium is one where I researched and found that many believe the RDA is very very low. The only side effect is a loose stool. That seems easy enough to monitor.

As for your Vit B experience. There might be some research that shows you need a combination of vitamins to help YOU absorb that particular vitamin. It also can be the manufacturer of the B. In addition if you are sensitive to glutamate (as Dogtor J suggests those with seizure ususally are) many vitamins are in capsules that are a gelatine base, and this is a type of gelatine (an MSG byproduct)
Gelatin is a protein produced by partial hydrolysis of collagen extracted from the bones, connective tissues, organs, and some intestines of animals such as the domesticated cattle, and horses.
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Hydrolyzed Proteins are MSG which is a neurotoxin. I don't buy any supplements in gelatine based capsules.

Some vitamins should not be taken at the same time as other vitamins. I give Rebecca Selenium, and it should not be taken with Vitamin C. So I separate these two by at least two hours. It is a science, but one that I find to be worth the trouble. Far easier (for me) than monitoring the AED side effects. At least I feel I am aiding in her HEALTH rather than the opposite.

One certainly needs to listen to what their body is saying, especially your gut, and eliminate ALL triggers.
 
Robin,
I found an article online at worldwidehealthcenter.net by Ward Dean MD called Controlling Seizures:A Nutritional Approach.
At the end of the article(which is rather lengthy and heavily footnoted), he gives a list of supplements. The list just looked so long to me when I read it, that I discounted it as one more megavitamin therapy(heavy on the pocketbook, and I AM wary of vitamins because of my experience with the B complex).
His list does include magnesium, selenium, taurine, l-carnitine, GABA, B complex, E, DMG, pregnenolone, Kava Kava.
Did you do any testing for levels of the minerals before you started Rebecca on her regimen? Are there any combination vitamin pills that you find have the vitamins you need.
I liked what you said about the gelatin capsules; I believe that the B complex I was taking was in a capsule.
I printed off this article, but must have been out to lunch when I did because I don't remember it. I have a notebook where I keep papers I've printed from the internet. My husband says I should just bookmark them(which I do), but I don't even remember why I bookmarked something weeks later.
 
I think you would do better by researching CWE regarding vitamins and minerals. The site you posted is selling something, and this is always questionable information.

I understand that you are wary of vitamins. There is another member that had difficulty with Vitamin B and I am not sure how the body processes that, but as I said it might need another vitamin to help it be absorbed properly.

Rebecca was tested for some nutritional elements, and yet I have also learned that sometimes just because the (hair test in Rebecca's case) shows that there is an abundance, in certain instances this is not a good sign. Sometimes this means that the body is not absorbing it well.

I begin one thing at a time, and give it at least a week to see if there are any side effects. For my daughter she has had specific issues that involved the intestinal tract, and I have worked on that. I have also looked at her blood tests, and questioned doctors about low or high numbers. I don't find this to be any less offensive than a medical doctor prescribing four or more meds at a time. It is my belief that they have no clue as to what side effects that will produce. I am sure this route is not for everyone, but for us it has made great improvement in my daughters health.

Nutritional changes are the number one route to go. No question in my mind.
 
I have been googling the different vitamins and minerals tonight, just reading and trying to open my closed mind about the efficacy of them.
Do you mind sharing just what exactly you have found; I guess I'm asking for a list of vitamins and minerals you have found helpful for Rebecca. Not asking for dosages.
Your info is always good. I'm glad I was sent here.
 
Molly - I hope you are in for some weekend reading.

I gave a list on Rebecca's Story here:
http://www.coping-with-epilepsy.com...ack-rebeccas-story-2733/index2.html#post26114

Then there are these threads:
http://www.coping-with-epilepsy.com/forums/f22/intractable-epilepsy-tied-nutritional-deficits-944/
http://www.coping-with-epilepsy.com/forums/f22/magnesium-1300/
http://www.coping-with-epilepsy.com/forums/f23/omega-3-fatty-acids-docosahexaenoic-acid-dha-559/
http://www.coping-with-epilepsy.com/forums/f22/thyroid-dysfunction-seizures-2738/
http://www.coping-with-epilepsy.com/forums/f22/common-foods-attacking-your-brain-toxins-3252/
http://www.coping-with-epilepsy.com/forums/f23/there-cure-epilepsy-882/
http://www.coping-with-epilepsy.com/forums/f23/vitamins-seizures-1825/

if you want more... up in the menu bar there is a search function. Type in some words and it will give you a list of threads that might be worth reading.
Also if you hang out in the Library, and run through all the pages and read up on what interests you, you will be needing a head massage when you are through.
 
Robin,
Thanks for pointing me in the right direction. I really appreciate it.
I'll be reading, a lot. I just feel like I haven't been proactive enough. Now is the time.
 
Molly97 said:
My husband and I took a three day motorcycle trip around the Branson and northern Arkansas area. Beautiful riding. We talked quite a bit about my seizures and I just wondered if anyone else here has similar experiences.
We were riding along the Buffalo Canyon and suddenly, there was the vista. I went into visual overload; it was like being slammed in the face with something huge. I had to close my eyes, and when I reopened them, I could enjoy the view. While we are riding, I notice from time to time that the scenery gets this impressionistic look to it, then it starts jiggling. If I go ahead and close my eyes, it goes away. Again, while we are riding, going down a bumpy road can trigger a seizure. He knows to stop the bike and let me off; I lay down on the roadside until it passes. This can happen in the car too.
Click to expand...

Have you tried Dramamine? That's what people take for motion sickness. Also, How is your sense of balance? I have to work on mine daily.
 
Trust me. This is not motion sickness. I do not need dramamine. My sense of balance is fine until a seizure puts me on the floor.
 
wow

ok, sorry. Just went I went camping with girl scouts when I was a kid, most needed dramamine. Then they always checked on me. I just began to associate the two. My bad.
 
Shelley,
I apologize for my abrupt reply. Right now, I am concerned over the fact that my seizures are changing, again. I have a raw nerve about it.
That said, please accept my apology for being unintentionally rude to you.
 
no problemo

Mine seem to be changing as often as I change sox right now also.
With it seems to be depression. I am calling it a part of menopause.
Need to rethink diet and exercise plus rest.
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