Vitamins can help, Additives can cause seizures

[canarm1949]

The following has helped my son have fewer seizures. However, do remember everyone is different but in general this should help.
Also, I know how difficult it can be to discuss natural supplements with medical doctors. But, do discuss this with your doctor and pharmacist before you try it yourself.

We have learned the hard way years ago that doctors can not be trusted, and they certainly do not have all the answers. It's very unfortunate as we count on them to help out!
Organized medicine certainly does not believe in alternative or natural medicine. So I have spent years learning about vitamins, minerals and took college courses in herbology .
Try to learn as much as you can about everything that affects you. Keep notes and logs so you can check back as to what works for you and what does not. No one knows you better than you yourself.

My son is on polypharmacy (multiple drugs) for his seizures and I hate the thought.
To help him along he takes many vitamins and herbs.
Vitamin E has been shown at Toronto's Hospital for Sick Children to help reduce seizures. Along with Vitamin E , 200-400 I.U. he takes 100mcg of selenium, vitamin D3 2000 I.U. (sun exposure is best but the further north form the Equator you go the more you will need to take D but be careful as too much is dangerous in pill form), vitamin B 50 complex,
vitamin B6 100mg, vitamin C 2000mg, magnesium 250 mg, calcium 400 mg, Co Q 10 100mg, Milk thistle 400mg as a liver protector, and a multi-vitamin.

His doctors gloss over this, usually with the wording "they are not effective but if you feel better giving them to him go ahead." However, I beg to differ with the doctor and he doesn't like it. Yet when ever he wants to change the drug regime I ask why, and his answer the last time we were in his office was; " epilepsy drugs are a game of trial and error."
Thanks doc! We have tried every drug out there and still my son has seizures. Lucky we reduced them greatly by eliminating the food additives and employed vitamins. No thanks to organized medicine we had to find out for ourselves!

I keep my son on a strict diet free of most additives (can't avoid everything) the majors being Food Coloring, MSG and it's multitude of names aka Mono Sodium Glutamate, Soy Protein Concentrate/Soy Protein Isolate to name a few, Nitrates, Aspartame, Carrageenan , basic sugars, milk (really bad for his seizures), Sweets, Caffeine , of course no sodas and no alcohol.
You would be surprised how wide spread these additives really are. They are not only in foods but also, in toothpastes, gum, even vitamins, beer, shoe polish, shaving cream just to mention a few.

The neurologist a top professor, says these thing shouldn't affect him. Yet we know that within an hour of having these things he will get a seizure cluster. Recently we went to a BBQ for member of an epilepsy group. We were stunned that they had hot dogs on the menu. I pointed out to the group leaders
that hot dogs have nitrites and MSG and could cause seizures to those that didn't know about the problem. Of those that had the hot dogs, within minutes to an hour at least 30% had some sort of epileptic event.

Today's doctors receive less than 10 hours study on nutrition and natural supplements. Therefore they really don't know much more than you and me!! Is it little wonder that so many people today seek out alternative care doctors, naturopaths, or other drugless care modalities.

Brain health and Gut health are very closely related. The gut makes more serotonin than the brain. In fact, 95% of all the serotonin in your body is made there. Only 5% is made in your brain. Plus the guts are where your body makes vitamins. Probiotics are another must take supplement. Especially if anyone takes antibiotics for even a few days.

The post above is in no way shape or form intended as medical advice. Always consult with your primary health care provider before undertaking any new regime.

 

[Chaz1]

Warm welcome canarm1949,

Many a CWE is right behind you, this family included, we always looking to the safe alternatives...

quick question, Milk thistle, no interference due to it being a liver cleanser...?

Thanks so much for sharing.......

Keep posting please....!

 

[Andrew]

Vitamin B6 Dependent Epilepsy

In RARE CASES of epilepsy B vitamins do help:

Pyridoxine-dependent epilepsy occurs in 1 in 100,000 to 700,000 individuals. At least 100 cases have been reported worldwide.

http://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

Pyridoxal 5'-phosphate-dependent epilepsy is a rare condition; approximately 14 cases have been described in the scientific literature.

http://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

Also:

http://faculty.washington.edu/sgospe/pyridoxine/index.html

And my story (posted 02-20-2011):

http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

And:

http://www.coping-with-epilepsy.com/forums/f22/vitamin-b6-magnesium-therapy-autism-pdd-adhd-17977/

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

A high dose of vitamin B6 may cause Peripheral Neuropathy (nerve damage).

Certain vitamins may interfere with some Anti-epileptic Drugs.

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

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

 

[canarm1949]

Thank you Chaz1.
As you know the drugs take a toll on the liver and kidneys.
Milk Thistle capsules Standardized to contain a minimum of 80% Silymarin
the active ingredient , has been used for centuries as a liver cleanser.

I told the doctors about it but they haven't got a clue re interactions.
You can also ask your pharmacist.
For more info, here is but one link;
SORRY, I'm told I'm not allowed to post links!
try Webmd, or just Google Milk Thistle contraindications.

I sure wish these doctors knew more than just to pick up the prescription pad!

 

[PFunk]

Thanks for the information!!

I guess my question would be how do you avoid nitrite in vegetables.

"One of the things that happens when sodium nitrate is used as a curing agent is that the sodium nitrate is converted to sodium nitrite. It's sodium nitrite that actually possesses the antimicrobial properties that make it a good preservative. Interestingly, the sodium nitrate that we consume through fruits, vegetables and grains is also converted to sodium nitrite by our digestive process. In other words, when we eat fruits, vegetables or grains, our bodies produce sodium nitrite."

This is why they soak "all natural" bacon and hot dogs in celery juice. Look on the list of ingredients... if bacon isn't grey, then it has nitrate/nitrite in it.

 

[RobinN]

canarm - you are now in my club of alternative followers.
I am right there with you.

My daughter is med free for about 4+ yrs, seizure free for 1.5 yrs, and has had over 50+ tonic clonic seizures.

She is out on her own now, but nutritional changes were what slowly allowed her body to heal. I believe 100% in the brain / gut connection.

 

[Cint]

Today's doctors receive less than 10 hours study on nutrition and natural supplements. Therefore they really don't know much more than you and me!! Is it little wonder that so many people today seek out alternative care doctors, naturopaths, or other drugless care modalities.


The post above is in no way shape or form intended as medical advice. Always consult with your primary health care provider before undertaking any new regime.

More docs that specialize in E are considering dietary therapies nowadays. Plus those of us who also deal with other issues, like diabetes, seek nutritionists, and follow guidelines as far as diet.

http://www.epilepsy.com/EPILEPSY/dietary_therapies
http://www.epilepsy.com/epilepsy/treatment_atkins_diet
http://www.epilepsy.com/epilepsy/keto_news_may07-
THE LOW GLYCEMIC INDEX TREATMENT AND THE KETOGENIC DIET

 

[reidflys]

hello canarm1949,
you're right on with the Aspartame, i avoided it big time,
you probably already know this, but you need to write a book,
it seems like you are very educated about vitamins and epilepsy,
and your a great addition to this community, welcome

P.s. what is the deal with vitamin B. I've been told so many different things,
about needing a companion vitamin to take it, any thoughts?

 

[canarm1949]

Thank you all for your kind words. We are always learning new things.

It is unfortunate that drug companies and the main stream medical profession are so connected. What's more incredible is that many Epilepsy, or be it Diabetes or Arthritis groups and forums are secretly funded and or FORMED by the pharmaceutical giants so they can get their input by sliding it gently into the mix. So, be aware of it.
Not to mention the tons of false flag, planted dis-information by the drug companies and yes even by some of the top medical professors.
This is well know by many people who like myself found out the hard way.

I strongly suggest people see the Youtube documentary that will never show up on TV as the networks would lose millions in drug advertising.
Tell your friends to watch it too.
Making a killing; The untold story of psychotropic drugging.
this video tells you how psychiatrists are making up new conditions just to push drugs. You will see drug reps MDs and Psychiatrists telling you the real facts.

Dis-information gets everyone confused so people stop taking natural supplements. By the way, the drug companies are trying hard to stop you from buying vitamins period, or at least to make it so anything more than a tiny amount of say vitamin C you would need a PRESCRIPTION !
That is why one day we are told for example that vitamin "x" is good for you, and days later we hear that this same vitamin causes serious problems even death.

We don't hear the truth. Since I can't post links here I will give you the names of some good natural health site.
beyondhealth
orthomolecular (dr. Saul PhD)
Mercola (dr. Mercola)
naturalnews

reidflys, you asked about vitamin B. In my research, vitamin B should be taken as a complex of B vitamins in order to work synergistically.
However, my son does take extra B6 on it's own. Too much can cause nerve damage.
Anything I post should never be taken as medical advice.
Always consult with your primary health care provider.

 

[Nakamova]

I strongly suggest people see the Youtube documentary that will never show up on TV as the networks would lose millions in drug advertising.
Tell your friends to watch it too.
Making a killing; The untold story of psychotropic drugging.
this video tells you how psychiatrists are making up new conditions just to push drugs. You will see drug reps MDs and Psychiatrists telling you the real facts.

I'd like to point out that the "Making A Killing" movie was produced by the Scientologists, and is not without its own set of biases and flaws. Grain of salt.

 

[Havok]

It's worth mentioning that most herbal supplements do not fall under the laws of the FDA, and aren't required to have a comprehensive list of ingredients. Be careful.

 

[canarm1949]

The FDA wants and plans to make it difficult for you to buy herbs.
Are you aware that 10s of thousands die due to drugs every years?
Yet you probably can count on your one hand the number that die from herbs.
The FDA is supposed to look after the general public. However, are you aware the FDA is a revolving door of numerous doctors who work for the drug companies and own stocks in the pharmaceutical giants?
Unfortunately too many people put their trust in the FDA.
I'm not saying people should run over to herbs and vitamins. Unless you educate yourself on supplements do use caution. Remember many drug are made from herbs or synthetics of herbs that can be patented.

 

[Havok]

You misread my intention. The point is that there is no law governing proper labeling on herbal supplements. When looking at the potential seizure triggering from additives, it's good to know -all- the ingredients in alternative medicine.

Also, when making sensationalist claims about things like the corruption of the FDA, it's good look at the process in which medicines are deemed safe. It's statistically derived. Generalizing to show you how it works, and using your tens of thousands, which I'm assuming is a figure in the US, that would be a value of .03% of the total population. This is a statistically small number. Because everyone reacts differently to drugs, to take into account such a small percentage would be a bad idea. Think of those who it helps. Am I going to stop taking Dilantin if there was a .03% chance I might die? Nope, I have a greater chance of death from a seizure.

Also, on the number that die from herbs...If you die with a prescription to a medicine, there is record of it. If you die from taking some herbal supplement...Well, that's pretty unlikely to be reported to anyone of worthy notoriety. Who would you even tell? The doctors? Who would they tell? The FDA? They don't have jurisdiction with herbal supplements, so why bother going through that chain of information? Even still, you're helping this idea by saying that they're harmless. Would your family think to tell the doctors you're overdosing from a falsely labeled herbal supplement? Probably not, it's harmless, remember?

 

[JaneC]

I have been on antidepressants for much of my adult life. I also take minerals prescribed by a naturopath, which may well be the reason my ME (no way of proving it) has gone into remission. I am happy to pick what suits me from either side while not taking too much heed of extreme views on any.

 

[canarm1949]

Havok, I understand what you are trying to say, and I agree, just like I said in my last post. Herbs are not perfect and they should be under some type of check. But, please to all those that read this, don't be so trusting of the FDA. They support the profit makers not you.
I was working in the drug industry. I know what goes on.
Don't take my word for it! Google " Corruption in the FDA" and you will find nearly every major new organization.

Here is an example;

By: Dee Nicholson
examiner.com

An information bomb exploded in the dark underbelly of the US Food and Drug Administration in recent weeks, as one courageous former FDA drug reviewer blew the whistle on mafia-like corruption at the highest levels of the agency, describing widespread racketeering, witness tampering and retaliation, and more.

Speaking with Truthout.org’s Martha Rosenberg, scientist Ronald Kavanaugh recounted a chilling story of the deliberate skewing of research material and information designed to ensure the marketing approvals of dangerous drugs like Vioxx, Avandia, Zyprexa, and many more. “”One [FDA] manager threatened my children…I was afraid that I could be killed for talking to Congress and criminal investigators,” Kavanaugh stated.

 

[Havok]

I'm not denying a large amount of corruption, but how do you really know what's okay to take and not to take? Some studies could be covered up, some could not. It's a gamble not to take the medicine, and a gamble to take it. I'd rather take it and hope. And, the issue with herbs isn't with the FDA, it's with legislation that needs to enforce regulation. Only when widespread death comes from herbs does it get banned or regulated. Like ephedrine.

Did you know that skewing results is actually really common in all science? Funding is the issue with that. Investors: "Hm, your study didn't say what we wanted it to, so you now lose the funding for your life's work. Sorry" Then you get threats or bribes, and it's all a mess. Thankfully, people don't bribe people when studying animals lol (my career path).

Looking at that example, one thing stuck out.
"106,000 Americans die, each and every year, from properly-prescribed and administered pharmaceutical products"

This makes no differentiation between possible bad approval and incidental bad interactions. These types of figures can be used in many ways. To give an example, I know of some anti-convulsants that can cause seizures. Do I think that if someone dies from an increased severity seizure, bad regulatory approval is the culprit? No, it's just that person's body's reaction to it. None-the-less, it adds to that 106k total.

Not arguing for argument sake here, just my thoughts

 

[canarm1949]

I just wish that we got more truths and facts instead of being mislead, be it drugs, vitamins or car companies.
It's unfortunate, but one only needs to follow the covered money tracks to find the answers. And, that we ourselves can not do.
Even our food is being controlled by Monsanto's GMOs.
In California Prop 37 about GMO food labeling is being undermined by the chemical companies, Monsanto and the Food Giants who don't want us to know the facts. I hope the people will vote in favor of putting GMO info on the labels and beat Monsanto.
India has kicked Monsanto out of the country.

 

[Havok]

Thanks for pointing me to the Monsanto thing. I've never heard of it. I'm a bit confused though. Is it that people are against genetically engineering crops or just that the company is scum? Can you give me reliable information?

 

[canarm1949]

Monsanto is a huge chemical company that is engineering foods to contain PESTICIDES on the inside, so that insects will not eat foods such as corn, grains, soy beans etc. Monsanto is in the news almost daily for taking control and patenting seeds that belong to all of humanity.
In fact, their patented seeds must be purchased from them and their distributors every year. farmers can no longer save some of this year's seed for next year as the patent seeds have been engineered not to re-grow the following year. It's incredible. They plan to control the world's seeds, like in science fiction stories!

Foods such as soy (thought to be the world's answer for protein) corn and several others so far contain herbicides which can continue to multiply in your gut. These foods are killing livestock, causing deformed fetuses in animals and humans, causing serious illnesses .
What Europe has done is to force food manufacturers to label foods that contain genetically modified organisms (GMO) so people can decide if they wish to eat more naturally.
Here in America, California is the only state with proposition 37 to be voted on as to whether people want such labeling.
The food companies, such as Kelloggs, General Foods, Kraft, all the biggies along with Monsanto are spending some $60-100 million in advertising to convince the population that GMOs are OK!!

Last Week India kicked Monsanto out of their country.

Google GMOs, Monsanto, Prop 37, Dangers of GMOs, etc etc.

 

[ksrandall]

The following has helped my son have fewer seizures. However, do remember everyone is different but in general this should help.
Also, I know how difficult it can be to discuss natural supplements with medical doctors. But, do discuss this with your doctor and pharmacist before you try it yourself.

We have learned the hard way years ago that doctors can not be trusted, and they certainly do not have all the answers. It's very unfortunate as we count on them to help out!
Organized medicine certainly does not believe in alternative or natural medicine. So I have spent years learning about vitamins, minerals and took college courses in herbology .
Try to learn as much as you can about everything that affects you. Keep notes and logs so you can check back as to what works for you and what does not. No one knows you better than you yourself.

My son is on polypharmacy (multiple drugs) for his seizures and I hate the thought.
To help him along he takes many vitamins and herbs.
Vitamin E has been shown at Toronto's Hospital for Sick Children to help reduce seizures. Along with Vitamin E , 200-400 I.U. he takes 100mcg of selenium, vitamin D3 2000 I.U. (sun exposure is best but the further north form the Equator you go the more you will need to take D but be careful as too much is dangerous in pill form), vitamin B 50 complex,
vitamin B6 100mg, vitamin C 2000mg, magnesium 250 mg, calcium 400 mg, Co Q 10 100mg, Milk thistle 400mg as a liver protector, and a multi-vitamin.

His doctors gloss over this, usually with the wording "they are not effective but if you feel better giving them to him go ahead." However, I beg to differ with the doctor and he doesn't like it. Yet when ever he wants to change the drug regime I ask why, and his answer the last time we were in his office was; " epilepsy drugs are a game of trial and error."
Thanks doc! We have tried every drug out there and still my son has seizures. Lucky we reduced them greatly by eliminating the food additives and employed vitamins. No thanks to organized medicine we had to find out for ourselves!

I keep my son on a strict diet free of most additives (can't avoid everything) the majors being Food Coloring, MSG and it's multitude of names aka Mono Sodium Glutamate, Soy Protein Concentrate/Soy Protein Isolate to name a few, Nitrates, Aspartame, Carrageenan , basic sugars, milk (really bad for his seizures), Sweets, Caffeine , of course no sodas and no alcohol.
You would be surprised how wide spread these additives really are. They are not only in foods but also, in toothpastes, gum, even vitamins, beer, shoe polish, shaving cream just to mention a few.

The neurologist a top professor, says these thing shouldn't affect him. Yet we know that within an hour of having these things he will get a seizure cluster. Recently we went to a BBQ for member of an epilepsy group. We were stunned that they had hot dogs on the menu. I pointed out to the group leaders
that hot dogs have nitrites and MSG and could cause seizures to those that didn't know about the problem. Of those that had the hot dogs, within minutes to an hour at least 30% had some sort of epileptic event.

Today's doctors receive less than 10 hours study on nutrition and natural supplements. Therefore they really don't know much more than you and me!! Is it little wonder that so many people today seek out alternative care doctors, naturopaths, or other drugless care modalities.

Brain health and Gut health are very closely related. The gut makes more serotonin than the brain. In fact, 95% of all the serotonin in your body is made there. Only 5% is made in your brain. Plus the guts are where your body makes vitamins. Probiotics are another must take supplement. Especially if anyone takes antibiotics for even a few days.

The post above is in no way shape or form intended as medical advice. Always consult with your primary health care provider before undertaking any new regime.

Hi! My name is Susan. I'm a long time epilepsy patient as well as a Medical Assistant graduate from Everett College in Renton, WA, USA. Just so you know, I was diagnosed when I was 4 year old. (FYI - I'm 36 years old) My parents and I have gone through all the ups and downs that you're going through right now. I managed to find this thread via Google, and I agree with most of your points. You've done a very good job researching what your kid needs! I commend you!

Having said that, there are some things I need to point out:

#1) You mentioned that your son is taking herbs for his condition. I assume you mean Alternative Medicine Herbs that everyone is raving about. From personal experience, I know that these herbs cause pain and more seizures in epilepsy patients (like Ginko Biloba & Ginseng). Even simple herbal teas like Green Tea & Chamomile Tea can cause migraines. Some herbs even block the absorption of epilepsy meds (like Chinese Peony). Here's what I found on Milk Thistle (courtesy of Web MD):

--------------------------------------------------------------------------
"Medications changed by the liver (Cytochrome P450 2C9 (CYP2C9) substrates) interacts with MILK THISTLE
Some medications are changed and broken down by the liver.
Milk thistle might decrease how quickly the liver breaks down some medications. Taking milk thistle along with some medications that are broken down by the liver can increase the effects and side effects of some medications. Before taking milk thistle talk to your healthcare provider if you take any medications that are changed by the liver.
Some medications that are changed by the liver include amitriptyline (Elavil), diazepam (Valium), zileuton (Zyflo), celecoxib (Celebrex), diclofenac (Voltaren), fluvastatin (Lescol), glipizide (Glucotrol), ibuprofen (Advil, Motrin), irbesartan (Avapro), losartan (Cozaar), phenytoin (Dilantin), piroxicam (Feldene), tamoxifen (Nolvadex), tolbutamide (Tolinase), torsemide (Demadex), warfarin (Coumadin), and others.

Medications changed by the liver (Glucuronidated Drugs) interacts with MILK THISTLE
The body breaks down some medications to get rid of them. The liver helps break down these medications. Taking milk thistle might affect how well the liver breaks down drugs. This could increase or decrease how well some of these medications work.
Some of these medications changed by the liver include acetaminophen, atorvastatin (Lipitor), diazepam (Valium), digoxin, entacapone (Comtan), estrogen, irinotecan (Camptosar), lamotrigine (Lamictal), lorazepam (Ativan), lovastatin (Mevacor), meprobamate, morphine, oxazepam (Serax), and others.
--------------------------------------------------------------------------

Valium, Lamictal, and Dilantin are all epilepsy medications. These three meds are hampered by milk thistle. If the body (esp. the liver) doesn't process the epilepsy medications correctly, then the patient will have a higher risk for seizures. Worse cast scenario is that the effects of these herbs can lead to status epilepticus (aka the permanent, fatal seizure). It's really important not to take anything that can stop the prescription epilepsy meds from working. A better alternative is to eat fatty fish (like salmon, tuna, trout,etc.) and Cod Liver Fish Oil supplements. When I was a kid, my family ate fish at least 5 times a week, and my parents made me take Cod Liver Fish oil. Back then, the doctors used to say that I was going to end up in an assistant care facility, and one doctor said I was going to end up as a vegetable from all the seizures that I was having then. Today I'm as normal as any other adult. Fish and Fish oil aren't miracle cures, but I do believe that these foods helped my brain survive all the seizures that I had. (FYI-- I'm still an epilepsy patient on dilantin).

#2) I think your doctor was skeptical because there hasn't been enough scientific research on Alternative Medicine herbs. Part of the problem has been due to lack of funding from the U.S. govt. As you already know, the govt. is 16 Trillion dollars in debt (thanks to 2 wars), so the scientific community is reeling from the lack of money. People would be doing these studies if both the cost of research and workers were covered. If you're really interested in seeing more studies done on these herbs, I recommend starting a non-profit group that could raise money for research just like the Susan G. Koman For The Cure Foundation has done for breast cancer research.

3) It also doesn't sound as if your current neurologist specializes in Epilepsy. Not all neurologists are the same. Many of them specialize in different neurological disorders such as stroke patients. I definitely think you should get a second opinion ASAP. If you live in Western Washington State, look up Dr. Alan Wilensky at Harborview Medical Center's Epilepsy Clinic. The number is (206) 744-3576 or 1-800-EPI-DOCS (1-800-374-3627)

4) Regarding vitamins: In my personal experience, the whole food vitamins, like Vitamin Code, work much better than synthetic multivitamins like Centrum. Whole food vitamins are expensive, but they are worth the price. Plus, gel capsules are more easily digested than tablets. BTW, Vitamin Code does make vitamins for kids. Just go to thevitamincode.com for more info.

5) It sounds as if your son has food allergies, you should have him seen by an allergy specialist so he can be tested.

6) "epilepsy drugs are a game of trial and error" -- That statement is very, very true. Once doctors find a medicine that works, it takes about 1 to 2 years for the patient to adjust to the meds. Plus, the doctors are supposed to be doing monthly blood draws to see where medication levels are at. If you're doctor is not ordering lab tests, then you really need to find someone who will do the job.

8) Even with meds, seizures come in and out of remission all the time. There are no guarantees that a person will be 100% seizure free in their life. Even with the best care and precautions, people get seizures. The last time I had a seizure was 4 years ago, and I've been on 500mg dilantin since 2000. I think part of the reason for this is the lack of research funding. Even though epilepsy is common in the U.S., it is not as high profile as breast cancer. (FYI-The research for breast cancer is mostly funded via private donations). Even schizophrenia is studied more deeply than epilepsy. Just so you know, alot of the meds & treatment being used today are the same meds & treatment that doctors have been prescribing for the last 10 years!

7) According to your profile, you said that your son has complex partial seizures. Surgery may be an option if the medications fail.

Phew! I said alot. That's my two cents! ^_^

-- Susan Randall