Anyones seizures affected by vitamin supplements?

Cordero

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Hi Andrew,
The type of seizures I have are temporal lobe seizures on the right side of my brain.

Hi Jyearta,
My seizures are a lot like the ones you were having for years. I also feel very sensitve to things setting off my seizures. I feel so stupid telling my doctor that vitamins sometimes set off my seizures. He's a specialist and has like 400 patients on top of all his education but yet he hasn't heard of vitamins possibly setting off seizures. The last time I researched if vitamins could set off seizures I found that vitamins that had sugars like aspartame could set off seizures if taken for a long time. The sugar gets deposited into the brain and can eventually cause seizures. I didn't find anything that said that vitamins can cause a seizure shortly after taking them. So I've always felt so alone in this but hearing about your experiences makes it not seem so alone. Hopefully you continue to have seizure control and your body is not sensitive to chemilcal changes like medications, vitamins, etc.

Thanks for your responses everyone.
 

jyearta

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I was just wanting to know, if folic acid has caused seizures for anyone else.

I feel like my boby is needing this, but each time I take it, I have a seizure.

I have tried different brands, but this happens each time.
 

Cordero

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Hi Jyearta,
My cousin who has epilepsy told me that when she takes the multi B vitamin that it makes her feel wigged out. I guess like more fidgety. I'm not sure if it's caused a seizure.
 

Nakamova

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Folic acid levels can drop during seizures and/or be low in some people with seizures. But taking extra folic acid may make some anticonvulsant drugs less effective, raising your risk for more seizures. Don't take folic acid without your doctor's supervision, and let them know if it seems to be causing seizures.
 

Andrew

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"It is the opinion of our clinical advisor Dr Morgan Feely, clinical pharmacologist at Leeds General Infirmary that it is difficult to judge the effects of folic acid on anti-epileptic drugs such as phenytoin, primidone and phenobarbital. However, it is conceivable that folic acid could lower the level of these drugs, particularly phenytoin. Changes to drug levels could in turn affect seizure control."

http://www.epilepsy.org.uk/about/positionstatements/folicacid.html

And:

http://www.epilepsy.org.uk/news/concerns-raised-over-policy-add-folic-acid-flour

Also:

http://www.epilepsy.org.uk/news/folic-acid-during-pregnancy-and-risk-birth-sefects

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Andy
 

jyearta

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thank you all for your advise.

Robin, my dilantin is a capsule form, and klonopin is a tablet form.

The strang thing is that vit. B6 has causes me to have seizures in the past, but now they seem to help.

Andrew thanks for the sites.
 

Scenie

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I've been reading that low levels of magnesium, potassium & sodium play a role in seizures, so I'm going to have lab tests this week. I was drinking a lot of Concord grape juice to flush toxins. Discovered it also flushed my medication. Calcium tabs are another thing I'm checking out - twitches occur hours later. Anything "diet" with aspartame is the worst. I'm wondering if coffee is another trigger, or maybe it's just the creamer.

It's all a big experiment. Wish I'd taken chemistry instead of biology.
 

RobinN

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Scenie - you could try taking them at different times of the day. Though I would think fresh lemon juice in your water might be just as effective if not more so. If you are sensitive I would take anything un-natural out of your daily diet. What do you have to lose? Magnesium is definitely a mineral that has helped my daughter (and myself for a 30+ yr battle with migraines)
 

Scenie

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Thanks RobiN - I'm so glad to hear your migraines were helped by magnesium and your daughter's seizures too. Are we onto something? My neurologist about croaked when I mentioned the "M" word :)
I like your suggestion replacing grape juice with fresh lemon in my water. It's a great trade-off.
 

Bucking the System

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All I take to control my seizures is supplements and no Meds. I avoid all MSG and Aspartame or anything remotely resembling them. They are named "excitoxins" for a reason.

The neurologists tried to put me on the usual regimen of barbiturates but I refused. I live seizure free and a normal life. I take the following while also eating a strict Low Carb - High Fat Diet (Paleo/Ketogenic) with little to no processed foods of any kind. I take Vitamin B Complex, Vitamin B6 (P-5-P), Folic Acid, Vitamin E, Krill Oil, Taurine, GABA, Magnesium L-Threonate, Magnesium Malate, Zinc, CoQ10, Iodine-Potassium, and Vitamin C. I also do Epsom Salt warm tub soaks 3-4 times a week with 2-4 pounds of epsom salts for 20-30 minutes to relax and detox and I rub Magnesium Chloride on the bottom of my feet, behind my knees, and on my inner upper arms 1-2 times a day. I also will soak my feet in foot tub with just enough warm water to cover the tops of my toes with 2-4 ounces of Magnesium Chloride in the water. I do that 2-3 times a week to help maintain magnesium levels in my body. Please do the research and understand the causes.... the answers usually leap out at you in most cases.
 

MaryK

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Hi: I avoid B6 as I am on phenobarbital and B6 reduces the absorption of phenobarbital.
 
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Per my neuro I take high doses of B12, Vit C and CoQ10 as well as Vit D (50,000 units per week), Calcium and Magnesium (to help with sleep. I notice lack of these supplements becomes a trigger. I also do Epsom Salt baths mainly to reduce inflammatory response in my body from myoclonus, SI dysfunction and degenerative discs or just muscle pain after seizures. They are all major part of my regimen - as much as meds.

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I have been told by my nutritionist as well as a lot of my own research to use Stevia in very low moderation, avoid sugar completely unless it comes from fruit. I am REALLY good at this until I have a seizure and all I want is ice cream- REAL junky ice cream. I also have been told to increase my coconut oil intake. i have hemp protein shakes with coconut manna, berries or bananas and almond milk once or twice a day. This is new for me. I also am working hard toward paleo/ketogenic but working around no gall bladder

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bandmom

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Folic acid levels can drop during seizures and/or be low in some people with seizures. But taking extra folic acid may make some anticonvulsant drugs less effective, raising your risk for more seizures. Don't take folic acid without your doctor's supervision, and let them know if it seems to be causing seizures.
I just started a thread about how folic acid supplements are encouraged for women taking an AED, then decided to search around for other threads on vitamins and found this. Folic acid possibly increasing the risk of seizures makes me wonder if the large dose she was taking (4mg or 4000mcg) could be the reason for breakthrough seizures all these years. Definitely something I will mention to my daughter's doctor.
 

Nakamova

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The latest thinking on folic acid is that it's low-risk for causing seizures. See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320966/

Supplementation with folic acid appears safe even up to doses as high as 15 mg/day. The U.S. Food and Drug Administration has directed that oral tablets of folic acid not exceed 1 mg because of concerns brought forward more than 30 years ago that folic acid in large amounts might counteract the antiseizure effects of AEDs and increase the seizure frequency in some children 20. Although that concern is no longer held by epileptologists, the dosage restriction persists.
 

KarenB

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We do use supplements for our son, but there's a lot of supplements that are a very good thing when taken in the correct dosage, but can be toxic if taken in large amounts.

My preference is, if at all possible, to get as many of the beneficial nutrients through healthy eating, as they are better able to be absorbed by the body, and it's hard (almost impossible) to overdose on anything when consumed naturally in foods.

But sometimes that's not possible
 

KarenB

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I posted about this elsewhere, but after a review of Jon's seizure log, we found this astounding link with his multivitamin/supplement (like magnesium, selenium, taurine, carnitene, etc).

Jon has been taking this supplement for years. He started the ketogenic diet about a year and half ago. He had initial success (no seizures for 11 months), but recently relapsed. In an effort to tweak the keto diet, we were trying to eliminated "unnecessary" carbs, and his supplement had several carbs. So...I reduced his vitamin/supplements to a half dose. This was the result:

In the month prior to the change, he had:
-2 tonic/clonics
-5 tonics
-6 little mini-episodes (a little grunt or groan during night, which may or may not have been a seizure)

In the week after reducing his vitamins/supplements to 1/2 dose, he had:
-5 tonic/clonics
-13 tonics

Subsequently, he was put on Zonegran and Diazepam, which stopped the tonic clonics, but he still had the same frequency of tonics.

4 days ago, he went back up to the normal dose of vitamins/supplements. Since then, he has only had 3 tonics, which is a 77% improvement.

We always give Jon his vitamins with his meal and with a cup of water. We also spread it out to 3 doses per day, so he's not getting a lot at one time.
 
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