Seizures while on Low Glycemic Index Treatment

[EpilepticTom]

Hi everybody my name is Thomas and I am posting for help.
I have intractable epilepsy and have tried 3 different AED's. These are (Tegretol, Lamictal, and Clobazam). When I was first diagnosed - when I was 10, tegretol was working great for me and I went even a year without any seizures. Back then I was having nocturnal grand mal seizures and now I am 21 and having complex partial seizures and have increased tegretol levels and added the two new drugs with no help. My frequency over time has decreased to a seizure once every 2-3 weeks.
I decided to give LGIT a try and have been eating appropriately, i.e. - no bread, or complex carbs, no candy, potatoes, rice, etc.....Basically my diet consists of Salad, onions, and other non starchy green vegetables and non starchy beans like green, mung and snow peas. I eat any meat I like, but of course almost all my calories come from me eating olive oil with my vegetables, and drinking heavy cream(35%) 3 times daily......Basically to give you an idea i'm getting about 250-300 grams of fat per day. I occasionally have a few rasberries, blueberries, strawberries, or blackberries with my whipped cream I have. No juices at all, just mineral water with lemon.

I measure my ketone bodies and they are usually very high 80+ mg/dL
I am having more seizures for some reason! I had 3 yesterday, 1 today and generally 1 every 3 days. Whats the deal?

P.S. I'm also taking large amounts of Fish Oil about 25 grams of Fish oil per day. Thats 16 large capsules of fish oil or 24400 mg of DHA+EHA.

Does anyone have an idea what can be going wrong?

Thank you,

Thomas

 

[RobinN]

Dogtor J might say the heavy cream is the culprit.

I just found this on Wikipedia... of course not always a reliable source, but it might get you to thinking about other reasons that your seizures have increased

* The GI does not take into consideration other factors besides glycemic response, such as insulin response, which can be more appropriate in representing the effects from some food contents other than carbohydrates.
* A person's glycemic response varies (not the GI) depending on the kind of food, its ripeness, the length of time it was stored, how it was cooked, and its variety (white potatoes are a notable example, ranging from moderate to very high GI even within the same variety [4]).
* The GI of a food varies from person to person and even in a single individual from day to day, depending on blood glucose levels, insulin resistance, and other factors.
* The GI of a mixed meal is very difficult to predict. For example, fats and proteins can make a meal sit in the stomach longer, which reduces a food's GI.
* The GI value is based on a portion that contains 50 grams of carbohydrate only. This criticism can be addressed by taking the Glycemic load into account.

This is something to explore. Perhaps when we are done we will all be experts

 

[EpilepticTom]

why would the heavy cream be a problem??
It's a good source of fat. In fact heavy cream is used a lot in the ketogenic diet

 

[RobinN]

I would highly suggest that you read:
www.dogtorj.com
Check out Epilepsy in Humans, and the Epilepsy diet made simple.
He explains it so much better than I can.
I just have the visual of Elmer's Glue and Borden Dairy (they use to be the same company) Casein is used in industrial glues.

Many neurological nutritional plans suggest taking casein out of the food choices.
They are suggesting tree nuts and coconut oils are better choices in fats.

 

[Bernard]

Hi Thomas, welcome to the forum. :hello:

Are you trying the diet with medical supervision, or on your own? According to the description that's been published, the LGIT diet requires a multi-vitamin with minerals, and calcium supplements too. Are you taking those? Are you dividing carbohydrate intake evenly throughout the day?

When my wife tried the GARD diet (which Robin is suggesting), she had a strong ketogenic reaction and it messed with her hormones (throwing her menstrual period out of whack). Maybe you are having too strong of a ketone response to the LGIT diet?

My wife is currently using a diet that is loosely based upon the LGIT, but not as strict and it has provided the best results for her.

 

[EpilepticTom]

Bernard,
I have am getting a little medical supervision, but they are not closely monitoring me. I am kind of doing it on my own, but sometimes when my medical friends can help out, they give us their opinion of what I should do. I'm getting a little help from Millicent Kelly, we are corresponding by email. She is suggesting the heavy cream.
I have not been taking multi-vitamin pills. The only thing I have been taking is 1 magnesium+calcium supplement, but I ran out of pills like a week ago. I will go to the store today and buy some more, and should I buy calcium separately on it's own, because I buy the magnesium and it comes with calcium inside.
I am trying to eat 3 times a day, all meals with some kind of greens or vegetables, some protein and fat. As for carbohydrate intake, well, basically the carbs I eat are from some of the vegetables I eat during the day. Other than that a small amount of carbs come from the small amount of fruit I eat with my cream.
Why would me having a strong ketone response be a problem? Isn't that a good thing?

Thanks Robin, I will read up on that website.

 

[RobinN]

http://www.neurologychannel.com/epilepsy/causes.shtml

I was also just thinking about something. What about the increase in calcium. There is information I have posted here ( I will look for it) that suggests that it is calcium that passes the Blood Brain Barrier that is causing the problems. You need far more magnesium to keep that barrier in balance.

I didn't word that correctly, so perhaps if I find the article it will explain it better.

Here:
http://www.coping-with-epilepsy.com/forums/f23/astrocytes-brain-cells-root-epilepsy-605/

 

[RobinN]

This page is interesting as it relates to calcium and seizures:

Calcium and Related Mechanisms

From a physiological perspective, it is logical that calcium supplementation may be indicated when myoclonic seizures are encountered. For “when the calcium ion concentration falls below about one half of normal, a person is likely to experience tetantic contraction of muscles throughout the body because of spontaneous nerve impulses in the peripheral nerves” [4].

Since calcitonin and the parathyroid hormone affect serum calcium concentrations, is it not possible that problems in the production of either can lead to limited tetantic contractions?

Johns Hopkins’ researcher JM Freeman (M.D.) has found, “Significant changes in important body chemicals such as calcium and magnesium can cause seizures; so can a lack of certain vitamins. These chemical changes may provoke a disturbance in the brain, or a single seizure, by influencing the thresholds for firing...Calcium is a very important mineral for the normal functioning of brain cells, and low levels of calcium (hypocalcemia) can cause seizures. Hypocalcemia can be a consequence of severe kidney disease when too much calcium escapes from the kidney into the urine. It may also, but rarely, be caused by a hormonal problem that has the same effects...A deficiency of magnesium, a mineral that interacts with calcium, may cause low blood calcium and, thus, seizures” [10]. Interestingly, with a ketogenic diet, “a calcium supplement must be taken every day to be nutritionally complete” [11].

Other researchers have been coming to the conclusion that calcium-related nutrients and/or calcium-control mechanisms play a role in seizures.

Takeda et al concluded that there is growing evidence that elevated extra-cellular calcium levels and homeostatic calcium control mechanisms may be factors in developing acquired epilepsy (epilepsy that occurred after an injury) [12]. Similarly, after doing a study involving injury-induced epilepsy, Raza et al noted, “It is important to evaluate the possible functional consequences of altered CA 2+ dynamics in epileptogenesis…The ability of the neuron to restore CA 2+ loads to resting [CA 2+] is regulated by CA 2+ homeostatic mechanisms. Increased or prolonged entry of extracellular CA 2+ could contribute to the altered CA 2+ homeostatic mechanisms in epilepsy” [13] (note that cellular calcium levels tend to be inversely correlated with extra-cellular calcium levels). Thus, it does not seem unreasonable to conclude that those without injury could have seizures caused by calcium problems.

Interestingly, a study by Hamed et al found that those that were on long-term anticonvulsant medications had higher levels of calcium than non-medicated controls [14]. This might suggest that one of the reasons that some of these medications are continued long-term is that for some people, they somehow increase the retention of calcium, which may account for some of their anticonvulsant effects.

Hirose et al noted, “some forms of juvenile myoclonic epilepsy can result from mutations of a Ca 2+ channel. This line of evidence suggests the involvement of channels expressed in the brain in the pathogenesis of certain types of epilepsy ” [15]. While Kamp et al noted, “Ca 2+ influx into excitable cells is a prerequisite for neurotransmitter release and regulated exocytosis. Within the group of ten cloned voltage-gated Ca 2+ channels, the Ca(v)2.3-containing E-type Ca 2+ channels are involved in various physiological processes, such as neurotransmitter release and exocytosis together with other voltage-gated Ca 2+ channels of the Ca(v)1, Ca(v)2 and Ca(v)3 subfamily…the interaction of Ca(v)2.3 with the EF-hand motif containing protein EFHC1 is involved in the aetiology and pathogenesis of juvenile myoclonic epilepsy ” [16]. Kamp et al, properly concluded, “However, E-type Ca 2+ channels also exhibit several subunit-specific features, most of which still remain poorly understood ” [16].

While they are not fully understood, it seems apparent that calcium control mechanisms play some role in myoclonic seizures [15,16].

http://www.healthresearch.com/myoclonic.htm

http://www.epilepsy.com/epilepsy/provoke_nutrition

Abstract

Background
Nearly a third of people with epilepsy do not have their seizures controlled with current treatments. Continuous attempts have been made to find new antiepileptic drugs based on increasing knowledge of cellular and molecular biology involved in the genesis of epilepsy and seizures. Therefore calcium antagonists that can alter the effects of calcium on brain cells have been investigated for effect on epileptic seizures.

Objectives
To evaluate the effects of calcium antagonists when used as an add-on therapy for people with drug-resistant epilepsy.

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD002750/frame.html

Could it be possible that due to the large amounts of heavy cream, that you are throwing the other minerals out of balance?
http://www.anzca.edu.au/jficm/resources/ccr/2002/december/ClinicalReviewCPMII.html

 

[Bernard]

Why would me having a strong ketone response be a problem? Isn't that a good thing?

I don't know if it is a problem for you or not. I just mentioned that it was a problem for my wife. Menstrual dysfunction is apparently a comon side effect of the ketogenic diet (see http://lib.bioinfo.pl/pmid:12790900 ). Obviously this isn't a problem for a man, but there are still potential adverse effects from a ketogenic diet. :twocents:

 

[EpilepticTom]

This page is interesting as it relates to calcium and seizures:

Robin, there appears to be no calcium at all in the 35% whipping(heavy) cream I am drinking(To my surprise too). I assume because it's almost like butter? So if that's the case I guess the calcium theory goes out the window?

I read about the gard diet on dogtor j site, and it seems pretty convincing....How do I know if it has casein? If theres no calcium that means no milk?

 

[RobinN]

nope... all dairy has casein, it is the protein.

No calcium in heavy cream? hmmmm thought it was in all dairy

Cream is often thought to provide only fat, but it also contains vitamin A and some riboflavin (B2) and calcium. One tablespoon of cream contains 10 to 30 milligrams (mg) of calcium, depending on the product. The Nutrition Facts panel on the label of cream and cream products provides nutritional information.

Does yours actually say none, or just that it does not meet the RDA?

http://www.elliottsnaturalfoods.com...J000AKHMCCQSHD8ED1&id=26616&private_product=0

This does say 0% , but that is also based on 1 tablespoon, so if you are drinking cups... I don't know what the % would be.
Maybe the calcium theory is all a wash. Just thought it might make some sense.
You personally could have a sensitivity to dairy. Maybe not a allergy to it, but a sensitivity can also cause some havoc in the system.
Just thinking out loud for you to hear.