Vitamin D deficiency cause seizure/epilepsy?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I agree MMRocks--Sounds like you've really done your research! I had serious deficiencies going on and am a devout nutrient researcher as well. I found this awesome book by doctors for healthcare professionals about nutrients, supplements, and the effects of medications on them (and how they interact with each other)--it was outrageously expensive. AlohaBird--I'd do it without supplements if I could get enough but I can't--I can't get enough Vitamin D or B complex without supplementing (or magnesium but you're basically supplementing that way as well). If you add together multiple AEDs and something like perimenopause (did I just say that?) together, sometimes supplements are the way to go. I'd supplement zinc as well if I knew how to do that safely but I don't. I can tell if I'm getting too much of any of the others by now--zinc is unknown territory to me. I'll eat more seeds!
 
Last edited:
Definitely Lindsay, synthetic supplements are better than nothing but you just have to be careful not to over-correct any one part.

MMRocks,yep, it can get to be a downhill spiral.

I am trying to break out of it right now by getting myself as strong and healthy as I can and then starting to cut back the meds. I've already been able to cut them by half going paleo and ketogenic. I would like to get rid of them all together.
 
Last edited:
I love to research. I read all kinds of books on D from library, and didn't get as much from that as I'd like.

The MOST information I got, and the best, was from a support group on facebook. I joined a Vitamin D group and a Magnesium group. They had the best education about it all. It was because of those groups I was finally able to get my D levels to rise.

I love the internet.
 
My daughter (she's 22) just started a vitamin D supplement after we requested her level checked and found she was deficient. I wonder if this could be the reason she's become medication resistant; eight years on epilepsy drugs have made her vitamin D deficient which caused more seizures. Why didn't any of her neurologists tell us about Vitamin D deficiency or have her blood checked until we asked for it? Still waiting to see what the supplements do. I will look into having her take magnesium and zinc as well.
 
Vitamin D deficiency is actually a highly prevalent condition, present in approximately 30% to 50% of the general population. So it may or may not be connected to your daughter's medication-resistance or to her seizures. I'm vitamin D deficient according to the most recent test I had done, but my medication is still effective and I'm seizure-free.
 
Why didn't any of her neurologists tell us about Vitamin D deficiency or have her blood checked until we asked for it?

Because they aren't trained in it, not even a little. Nutrition classes are not required for doctors in training. Proper nutrition PREVENTS visits to a doctor... while many become doctors because they want to help people, period, not all have that higher calling. Many become doctors because it is very profitable. And medical schools are very profitable. They are not going to train people to say and do things that put them out of business.
 
Why didn't any of her neurologists tell us about Vitamin D deficiency or have her blood checked until we asked for it?
Some other factors as well: There was a small pilot study in the 1970s that suggested that Vitamin D might play a role in seizure control, but it's only within the last few years that scientists have really started to test this possibility. In part this is because of funding issues -- drug companies aren't going to fund studies for something they can't make money off of. :( I hope that more and more neurologists test for D-deficiency and consider this low-cost treatment as a way to help with seizure control, but for it to become widespread there needs to be a lot more research that clarifies whether Vitamin D deficiency is the cause of or the result of epilepsy -- or both. At this point there are hypotheses for why D may help with seizure control, but not enough research has been done to provide a clear explanation.

So a treatment that makes a lot of sense, and seems very promising, may be slow to be adopted by some neurologists until there's a lot of hard science to support it.
 
From the small amount of research I have done so far, I suspect it is both. That seizures lower your vitamin D, and that low D causes seizures.

Same exists with Grief and Depression; grief and depression deplete your magnesium levels, and low magnesium levels worsen grief and depression.
 
Last edited:
Vitamin D is the immune system vitamin. The immune system is complicated and includes bone marrows, lymphatics, and the thymus and so on.

I am unsure if I have a vitamin D deficiency but I have tried to rev up my immune system for lacks of better terms.

Hmmmmnnn... have you thought that maybe your son is young enough to have no stigmas attached to breast milk or colostrum products?

I myself occasionally do take those products when cheap supplies are available. I also eat sweetbread offals, however there is really nothing scientific about that approach and it's nothing more than superstition on my behalf.

What do you suppose is causing the deficiency? Is he burning through his own supplies too quickly, or does he have some type of absorption issue? There is a very interesting term out there which I have contemplated may be a "syndrome" of mine, which is called hyperthymic, although it's left field terminology, so. If it's of anecdotal interest however.

Me personally, I'd suspect an auto immune disorder. I am no doctor. What else would cause someone to burn through supplies? Sjorgen Syndrome is not always associated with seizures but I have read mention of co-morbidity.

Quick search reveals this tidbit... So I could be right.

"New research out of Italy suggests that severe vitamin D deficiency is common in people with early primary Sjögren's syndrome."

If that is the case the strategy may be to shut down the immune system, so it stops being so active, and that sounds counter intuitive, and in a sense, yes, it is. Hope that helps, anything I have said could be absolutely wrong, only sharing in the event it helps.

From the small amount of research I have done so far, I suspect it is both. That seizures lower your vitamin D, and that low D causes seizures.

Same exists with Grief and Depression; grief and depression deplete your magnesium levels, and low magnesium levels worsen grief and depression.

Well since you are very interested in this and so am I. I get my colostrum from the pet stores, because it is the same stuff, only way cheaper. The stuff they sell to humans is ridiculously marked up. There is also a venue called "Only the Breast" and I may flash fry from that source before the winter is over.

Say it is an immune system in overdrive, and perhaps an auto-immune disorder, well, then maybe there is junk in the system that the immune system is desperately trying to clean out or repair. Something which is no lesion as that would lean more towards MS. In some cases the immune system might attack itself unwittingly, however electron-microscopes are only just beggining to peer into the realm of auto immune diseases, right? Only a theory.

This line of thinking.... I can't post links yet, so...

Immune system may cause chronic seizures

However, recent research has shown that micro-glial cells may play a major role in seizures. Researchers have found that glial cells, which are supportive cells that also constitute a major part of the brain’s immune system, cluster within areas in the brain when a severe brain injury has occurred.

“When there has been serious damage to the brain, such as a head injury or infection, the immune system is activated and tries to counteract the damage and repair it,” Barth said. “These glial cells migrate to the damaged area and release chemicals called cytokines that, unfortunately, also profoundly increase the excitability of the neurons that they are near.
 
Last edited:
As another poster mentioned, Vit D deficiency is very common.
It happens for several reasons. One of the most common is not enough exposure to sunlight.
So regular exposure to sunlight can help to prevent or correct deficiencies, but exposure means free of sunscreen or free of being covered.

Other reasons for def is not eating foods that naturally contain D and yes, some medications.

Vit D supplements can be helpful for some. My daughter is D def and is on 2000 IU but still shows a deficiency. I try to get her outside more to help with the problem.
 
Vitamin D is the immune system vitamin. The immune system is complicated and includes bone marrows, lymphatics, and the thymus and so on...Sjorgen Syndrome is not always associated with seizures but I have read mention of co-morbidity..."New research out of Italy suggests that severe vitamin D deficiency is common in people with early primary Sjögren's syndrome."

Thank You MrKap for this information! I briefly looked up Sjögren's syndrome, especially since at my last ER visit the doctor said I had a lot of autoimmune symptoms. I had never heard of Sjögren's syndrome before your post, lots of things fit, I will be bringing this up with my doctor! Thank you!
 
So regular exposure to sunlight can help to prevent or correct deficiencies, but exposure means free of sunscreen or free of being covered.

In a normal functioning body, yes. I've grown up in the deep South, and I never wear sunscreen. I currently live in the desert in Arizona, and I get Loads of sunshine every day- yet at last test, my D was 26.

The magnesium and potassium have made a difference- my level was 14 before I started taking those 2 supplements, so they are definitely working.

Anyone supplementing with mag/pot and not seeing improvement, I would look to the liver. Your liver is what takes the sunlight and converts it into D. So if you have enough magnesium and enough potassium and still are D deficient, it may be a good idea to have liver function checked at doctor's.
 
Do you know how mag & potassium help?
What type of mag do you take? We take citrate. No potassium supps yet though. I will research that more.

Also, you said in the normal functioning body. I am curious, do you have any info on specific abnormalities where vit d does not absorb properly with sunlight and/or D sups? Anything else beside liver function? Liver is generally good other than during times of illness.

I have always felt a little frusterated when I see my daughters levels are still low. In her case, not from drugs but she does have a long list of health issues.

For a while she was on something called the mito cocktail which is a prescription of a list of specific supplements. D was part of it. With the cocktail her overall health improved greatly. Last spring ins stopped covering the cocktail and since her health has declined. I have been trying to get the supps from the compounded cocktail from OTCs but have been unable to match the original script.

Thanks

J
 
Thank You MrKap for this information! I briefly looked up Sjögren's syndrome, especially since at my last ER visit the doctor said I had a lot of autoimmune symptoms. I had never heard of Sjögren's syndrome before your post, lots of things fit, I will be bringing this up with my doctor! Thank you!

Someone on a forum claiming to be a medical professional suggested I had it, because I was listing symptoms that matched that. The body attacks it's own tissue is the common way to describe an auto immune disorder, and there are ALOT of auto immune disorders. MS is an auto immune disease, however it is visible as multiple sclerosis (multiple lesions on the cns). So... is the immune system attacking the tissue creating a lesion, or is the lesion an area of tissue that has gunk in it and the immune system tries to dig it out? When I checked into emerg with concerns, I was positive my kidneys were the focal point to my seizures. My tests came clean. I began drinking tons and tons of water and began with the kidney home remedies. It moved out of my kidneys and my heart began to strain. fast forward, through many different medications the seizures are probably parietal mostly, but my chest will vibrate sometimes as well as my neck, arms and legs.

Anyways, my second and now months long boughts of seizure activity struck me right around the time I was eating wads and wads of bee propolis from a bee keeper which is a hard tree resin traditionally used as chewing gum. I've chewed the stuff before, but this batch was exotic and orange. I can't rule out that maybe somewhere in the electron microscope range or somewhere that my body is clogged up. I don't know enough about biopsies and chemical spectral analysis, but they really are that far in terms of understanding what is happening with the immune system. I mean there are only very few and sparse research papers as of recent that have even attempted to look at these tissues which are under attack at the electron microscope range. and so on. Hope that rant helps.

I am however also mentally ill, so, anything I say could be off, although I am fairly positive my perspective on these diseases may be accurate. If you believe that you have sjorgens specifically, then according to someone on some other forum somewhere, there are anti-body tests they can run. Sjorgens is not curable, or that's the first thing my doctor told me, however some people on forums, they might be telling the truth that they've nearly instantly made full recoveries after years of worsening conditions.
 
Last edited:
Do you know how mag & potassium help?

Yes. Your body cannot manufacture, distribute, or absorb D from sunlight or supplements without there being sufficient magnesium in the body at the same time. So a D supplement taken when you are low in mag would just be excreted. This explains why when I had a year of D prescription strength supplements, my D dropped from 29 to 14. I wasn't absorbing it at all (and getting sun every day to boot).

Every thing is connected to every other thing...without adequate Potassium, magnesium just sits there, inert. So even if you had enough Mag, but not enough potassium, your body 'thinks' there is no mag, and just excretes the D.

What type of mag do you take? We take citrate. No potassium supps yet though. I will research that more.

I tried mag pills, and they didn't work at all. I learned that long-term mag deficiency can cause absorbtion issues in the gut, which is why the pills were useless to me. I currently take a product called CALM, which is powdered mag that I mix with water, and it absorbs very well. The ingredients panel reads: Ionic magnesium citrate, created from a highly absorbable proprietary blend of citric acid and magnesium carbonate.

The citric acid is important too, as vitamin C is ALSO needed for magnesium, as C is the 'distributor' that moves mag throughout your body. Connections.

I pay $24 retail for a bottle of CALM, which lasts about 2 months. It can be found cheaper online I believe; we have only one health food store and they overcharge a bit.

For Potassium, I am using Cream of Tartar, off the spice aisle. $3 bottle and the body needs such minute amounts, it will probably last me a year or more. It is easy to overdose on potassium, really just need tiny amounts, so I'm going to emphasize this. The amount of CofT I take is about the same size as a grain of rice. I just mix it in with my water and powdered mag. There are potassium supplement pills, but personally I don't feel they are worth the money, when the Cream of Tartar works just fine. That dosage I take is for me, an adult, currently weighing 220 pounds. If you want to use CofT and want just a tiny amount, just wet the very tip (like 1/8 inch) of the handle of the spoon and dip it in. (it takes a full teaspoon to have too much; I just prefer caution here)

Also, you said in the normal functioning body. I am curious, do you have any info on specific abnormalities where vit d does not absorb properly with sunlight and/or D sups? Anything else beside liver function?

There's calcium levels, copper levels, iodine levels. So much inter-connectedness. I started adding natural iodine in the form of Pink Himalayan sea salt, it comes in it's own grinder like a pepper mill; I add one full twist of salt to my pot/mag cocktail.

Once I started this cocktail- the powdered mag, the cream of tartar for potassium, and the twist of pink Himalayan salt, my D levels came up from 14 to 26 in just 2 months.
 
Taking potassium supplements is really not recommended unless carefully monitored by a doctor. The window for healthy serum levels of potassium is very narrow--it's easy to go over that window with potassium supplements, very very difficult to go over with food sources. Also potassium supplements can be extremely harsh on your digestive system. I suffered through hypokalemia for a year. The way I had to correct it, aside of majorly reducing topamax, was through food sources--V8 and bananas (every day), and supplementing with magnesium. If you are magnesium deficient it is very difficult to increase potassium no matter what you eat or take (they are co-factors). Also, vitamin D deficiency in people with epilepsy can be caused not only by AEDs but also by uncontrolled seizures themselves. Several studies have shown that seizures reduce vitamin D levels. I was taking a lot of D and still was deficient every time--but I was also having constant seizures at the time. Sorry, not posting for a link on the seizure and vitamin D deficiency connection, don't have time right now to re-find it, but it's out on PubMed somewhere!
 
I try to stay with food sourced supplements too. Luckily I have bananas growing like crazy in my yard. It would really be hard to be potassium deficient here.
I think if you stay with food sources, the body knows how to do the balancing act for itself, how much of each to absorb in what ratio. When you bombard it with synthetics, it is much easier to overdo it on one aspect of the balance or another.
 
Aloha, in the cold, wintery climates some of us live in though, vitamin D is really not easy to get through natural sources, and food sources of vitamin D aren't well absorbed and converted. I definitely take supplements--but I watch which ones I take based on which ones you can go toxic on. Magnesium is also harder to get because our soils are less rich in magnesium with each passing year. Everyone on here I'm sure does their research and figures out what works for them personally--nutrition is the one thing that has made THE biggest difference in seizure control for me, hands down. I'm now as close to stable as I have been in two years and the biggest change has been diet and supplements, mostly vitamin D and magnesium and greatly stepping up dietary potassium and calcium. So it's one topic I've focused on so I know what I'm taking, what other nutrients each effects, which are safe in which quantities. I'll never stop taking supplements but definitely take food sources where I can. I do admit to being wildly averse to leafy green vegetables! Bad, I know.
 
I was thinking I could run an epilepsy retreat sanitarium kind of a thing here. All organic food grown in rich volcanic soil, trips to the beach (seawater is great at balancing your sodium, magnesium, etc transdermally)plus all the naturally occurring Vitamin D in the world and also lomi lomi healing massage sessions would be included in your spa package:)

Seriously, if I could get funding for that, it would be an interesting experiment. Just to see how much impact environment could have.

But I do understand that supplements sometimes are better out of a bottle than not at all. It's just that some people go by the "if a little is good, a whole bunch must be even better", rule and overdo one aspect of the balance or another. Easy to OD on potassium supps, not so much on bananas.

Can I mail you some of my excess bananas? I've got three stalks all coming due at the same time in my yard.
 
Hey, get your retreat going, and I'm so there :) Wow I'd love your bananas--I eat bananas each and every day. Strange, I'm really not tired of them!
 
Back
Top Bottom