My Take on Prescription Medications, Co‐Pays & Insurance
Okay…I fully understand that we are on prescription medication for a reason; and that it lies between either taking the medication to control the seizure or suffering the consequences. I truly get it. At this point in time, prescription medications are the quickest, fastest and most convenient way to control epilepsy without resorting to any kind of invasive procedure on the body. However, we are only pulling the weeds (masking the terrain with medication), and not getting the entire root (fixing the area where the disorder or disease comes from.) In some cases surgery is an option. But if you are like me you’ll live with the occasional seizure or aura (Depending on your severity) and curtail having a VNS (Vagus Nerve Stimulator) implanted or worse yet, the trauma of brain surgery. And as we all know, the side effects of medications and surgeries are sometimes brutal including life threatening side effects like I had with Zonegran.
On of my biggest frustrations has everything to do with the pharmacy. They always seem to be out of medication when it is ordered. That is where I want to advise anyone and everyone, especially parents of young children to always be sure and call your prescriptions into the pharmacy a week in advance unless you are able to get them in a three month supply in the mail depending on your insurance plan. It’s really frustrating when we as epileptics have to pay twice for a taxi ride to the pharmacy for something that is entirely not our fault. One time I get to the pharmacy and just as she is about to ring it up she states, “we were only able to fill part of your prescription and we will have the rest tomorrow.”
To top this all off, and I do not know who else holds this opinion…epileptic or not. But did you ever notice that if there is a problem with your insurance…even if they have been dealing with you for months, the pharmacy will not release your medication regardless of the severity until they get cleared by your primary care physician that your medication is “medically necessary” if it is a name‐brand instead of generic? In writing no less!
I feel so bad for the elderly that cannot afford insurance and are not able to pay out of pocket for their medication. One time I almost fell on the floor in amazement. My insurance had not kicked in yet and I had to wait a week or so to get the co‐pay to take effect. So just out of curiosity, I asked the pharmacist over the phone what one of my prescriptions, in this case the Keppra, would cost out‐of‐pocket vs. the three dollar co‐pay when my insurance kicked in. She exclaims “Three Hundred Seventy‐Four Dollars and Forty‐Nine Cents!” Now how would an elderly person on Social Security pay for that when the average two‐income household can’t either?
Also, if you are like me, you know instinctively that there is some naturalistic supplements, foods and other approaches…that if done on a daily and or weekly basis could curtail our seizures down to a minimum at the very least. But doctors, insurance companies and pharmacists are, in my opinion, in bed with each other figuratively speaking to keep there deep pockets full! That’s just plain wrong. Again, that is my opinion. Not a fact. I feel the same way about other diseases. If something is not medically proven, insurance will not cover it. Meanwhile people are living miserable lives because of greed. An acidic body is a breeding ground for disease.
Prescription Drug Tolerance
Since I was old enough to comprehend the effects on my body and mind from prescription medications, I have experienced many effects and patterns that are very crucial for one to understand and look out for. First, there are complications that one may experience from a specific medication such as light‐headed, blurred vision, slurred speech, heart attack, rash, blood clots, nausea and the like. Every pill gives its own set of ill effects in lieu of putting seizures to rest. Its like a double edged sword.
You may find, as I have that over time, you build up a tolerance to a specific medication. My classic phase of intolerance to seizure ratio went something like this. I would go about two months getting only small insignificant seizures. Then all of a sudden, I would get one of my zoning‐out seizures. I called it a cycle and could only describe it to people as if you were to take peanut butter and put it on bread in layers one at a time. After a while the bread (you) would not be able to hold anymore peanut butter (small, insignificant seizures) and break like a camels back carrying too much weight. Then the cycle would start all over again.
It is very important to keep a diary on how many seizures are acquired each day as well as the severity of each seizure.
Dietary Therapies
Supplements
In doing an extensive amount of research on vitamin supplements...which is always a work in progress, there are many supplements out on the market today that claim they can help the amount of seizures an epileptic has on a daily basis. This gets very confusing to choose which are right for us to use. Always consult with your physician (You know my opinion on them) and talk about yourself looking into supplements specific towards your needs.
Two recommendations are Omega 3 Fish Oil and extra calcium for women since prescription drugs may have a negative effect on bone density. Fish oil can be purchased flavored. (I like lemon) The benefits of fish oil range from cognitive, psychological and especially neurological disorders.
Ketogenic Diet
There is a diet that doctors will sometimes recommend to parents to start their children on known as the Ketogenic Diet. Just like Omega 3 Fish Oil, the Ketogenic diet is high in fat. (Athletes use this diet as well to burn fat and gain muscle) The premise behind the diet is to virtually trick the body using up all of the stored glucose by starving the body of any food intake whatsoever for twenty four hours. This in turn will force the body to start burning fat since it is now the primary food source that the body is now getting in addition to some but very few carbohydrates. (Roughly a 4 to 1 ratio) The amount of food that one ingests for each meal varies from one child to the next as it depends on the weight of the individual and must be measured precisely by parents unless it is performed in a hospital and administered by staff. This process is almost always done and monitored by a physician. So simply stated, when we eat a normal diet, the body will always burn glucose first before it starts to burn fat. In the method of the Ketogenic diet, the body has very little glucose and therefore must feed off of the fat because that is its primary source of energy. This is the method that produces Ketones in the body (substances derived from fat) which provides fuel to the brain and other organs. This process is not yet understood as to why it can alleviate seizures in some patients other than the theory that higher levels of Ketones tend to better control seizures in some children. One should wait on trying this diet until two or more medications have failed to get the seizures under control.
The diet also seems to work for more than one type of seizure and is also said to be more effective in children. The biggest barrier, and I think we would all agree, is that a child cannot live a “normal” childhood when it comes to hanging around other children. (Eating chips, cookies, candy and the like) Holidays and special occasions are especially difficult...even for parents.
Due to a lack of vitamins and minerals, precautionary measures must be taken. Be cognizant of children who are not yet communicating verbally as possible dehydration and kidney stones may develop so constant water is necessary to avoid these complications. (Alkaline ionized water as it has better penetration in the cells.) Speak to your doctor about getting a bone density test when on the Ketogenic Diet as vitamins and minerals are starved due to lack of natural food uptake.
Children should stay on the diet for a minimum of at least one month to see any results even though some children will take longer...up to three months to see a change. If the results are significant, doctors will suggest weaning or even stopping the medication in some instances. The diet should be done for two consecutive years unless otherwise suggested by your physician. Statistics point to an average of one third of patients who strictly follow the Ketogenic diet to the exact instructions attain significant results ranging from a drop in the amount of seizures to even becoming seizure free.
The Modified Atkins Diet For Seizures
In relation to the Ketogenic diet, the Modified Atkins Diet is geared more toward children as the food that can be consumed is more reasonable and therefore more sustainable for the long haul.
Glutamate Aspartate Restricted Diet (GARD)
There are some fantastic sites I found doing my research on this particular defense against not only epilepsy...but many diseases. Please do your research on these web sites as they are pertinent to our better health and wellness.
http://www.foodallergytest.com/
http://dogtorj.com/
Foods & Ingredients to Stay Away From
First let me say this. There is no food on planet earth that is better for us than mother‐earth provides. However, if produce is grown in massive commercial quantities where the soil is contaminated with pesticides due to massive chemical spraying, the soil then becomes contaminated with pesticides as well as the outer skin of the fruit or vegetable. This is why organics are more expensive. The fruit is not sprayed and there is a lot of work integrated for meeting or exceeding U.S. Standards to label something as “organic.” In addition to that less shelf life plus limited quantities equals higher prices.
The same thing goes for our meat consumption even though we should not eat as much meat as cold fish anyway. Cows and the like are injected with hormones to put more weight on there bodies which in turn yields more meat and thus more money for the seller. But the trade‐off is hormone‐ridden meat that us humans ingest is slowly wreaking havoc on the human body. That in part is why vegetarians are healthier than meat eaters. Once again, buy as much organic, Grass - Fed meat as possible.
Dairy
It was always taught to us as children that dairy is good for us. "It helps promote healthy bone mass and strong teeth!"...our parents would exclaim. However, this is not the case. Purchase the book "The Enzyme Factor" by Dr. Hiromi Shinya and you will get a really huge education as to what I'm talking about. I learned this from his book. Any kind of dairy or milk‐derived product wreaks havoc on the living body. This includes cheese, ricotta, yogurt, pudding, ice cream and anything else derived from dairy. Notice I did not say human body because this relates to all animals. If we look outside our windows and beyond into the wilderness and become attentive enough to how the wild live, we would get an education that not all of our bank accounts combined could pay for...all for free and it could change our lives for the better. After any animal is weaned off of there mothers milk, it drinks water for the rest of there life.
Bottled Water
Every body on planet earth should drink water. Good, clean, pure water that has been untouched by chlorine, lye and other substances used to treat it before it hits our pipes. Water up in the high rockies is the premier water and what we should all drink but obviously that is not reality. Ever wonder what people are doing pulled off to the side of the road collecting water into bottles from a "natural" spring or stream? They know that both tap and bottled water is no good for the body and that even filtering our water supply isn't enough to generate good health and wellness. The water...our tap water...needs to be restructured into ionized, alkaline water so the molecules can penetrate our cells and clean the body very thoroughly. Thus allowing the body to rid itself of toxins and disease. Plastic bottles contain BPA's and are basically poisoning anyone drinking water from those bottles. The water has been sitting on shelves for months before it even gets to market and having a field‐day interacting with the plastic. Get educated on proper healthy drinking water by clicking here.
These are ingredients that do the body absolutely no good at all. Do your best to stay away from them. Again, look at nature and ask yourself if they ingest these ingredients other than natural sugars that come from fresh fruits and berries.
Food Dyes
Here is a list of food dyes and the possible adverse effects they may have on the human body:
Red 3
History of causing thyroid tumors in animals.
D&C Red 33
Cancer in humans, genetic damage to animals.
Red 40
Carcinogenic and mutagenic in animals.
Asorubine, Carmoisine
Red color, coal tar derivative. Possible allergic reactions in asthmatics. Used for confectionary products. Banned in several countries, but not U.S.
Blue 1
Also known as Brilliant Blue and FCF. Suggestions of a small cancer risk. Used in dairy products, sweets and drinks, this is banned in several countries … but not the U.S.
Blue 2
This color is also known as Indigotine, Indigo and Carmine. Study shows brain tumors in mice. May cause nausea, skin rashes, allergic reactions. Banned in Norway, but not the U.S.
Citrus Red 2
Used on some Florida oranges, studies show this additive causes cancer.
Green 3
Possibly carcinogenic.
Green S
Used in canned peas, mint jelly and cake mixes. Banned in Norway and Sweden, but not the U.S.
FD&C Yellow 5
Also known as Tartrazine. Cancer, allergen, breathing difficulties and asthma attacks. Found in packaged soup, sweets, jams and cereals. Banned in several countries, but not U.S.
FD&C Yellow 6
Also known as Sunset Yellow, FCF, Orange Yellow S. Suspected of causing tumors in adrenal glands and kidneys. May cause allergies, hyperactivity, and chromosomal damage. Banned in Norway but not the U.S.
Annatto
Also known as Arnatto, Bixin and Norbixin. Skin, gastrointestinal, airway and central nervous system reactions reported.
Raw Flour
Sugar
Aspartame (for an inside look on how dangerous this is, click here.)
Wheat
Barley
Soy
Corn - This is a very long story and incorporates why corn as well as all grains are bad for the body. To learn more, Click Here.
Dairy of any kind (Casein is the culprit)
Gluten
Preservatives
Boxed Goods
Foods To Buy
Organic Produce
Herbs (Organic - Jarred & Fresh)
Organic Meats (Grass-Fed & Non‐Hormone)
Organic Eggs
Fresh Fish & Seafood (Wild)
Nuts & Seeds (Raw)
All Forms of Dried Fruits (craisins, dates, figs, raisins, currents, prunes, etc.)
Be sure that all meats that are purchased are "Grass Fed." This is important as the majority of meat we eat such as chicken is grain fed. Soy, wheat, corn and other grains are, contrary to popular belief, are not good for us. In fact, these grains are what are used to make commercial‐grade adhesives / glues with. See "Resources" tab for websites on grass fed meats. One time I was opening a brand new jar of well-known oats and the safety seal on it read "Made From Corn!"
Snacks
We all love a good snack once in a while, right? However, not all snacks are created equally. Not just in flavor but more importantly the ingredients it is made with. It is very important to buy as much organic snacks as possible. The selection is wide and is getting even bigger as people are becoming more and more health conscious. The biggest thing that needs to be kept in mind when purchasing any kind of food, even snack foods and processed foods such as potato chips is to read the label and be sure there are no preservatives in the product. I am not a fan of anything that comes out of a box, bag or can as it has not come from mother nature but some times we deserve a treat.
Balance Your Weekly Diet
It is very important to have balance in our lives as far as diet is concerned. As mentioned above, we have a lot of foods we need to steer clear of to try and keep ourselves free of seizures as well as maintain a healthy body. However, I am a big believer in balancing our lives with some pleasure. In this case, eating whatever we wish to one day per week. I pick Sunday as my “day off.” I eat anything I want to such as my home baked desserts, Italian bread, pizza, pancakes, french toast, bacon, sausage, cheese, etc. This allows us to not only stay on track during the week by eating healthy since we know we have that free day coming up. It also allows us to stay conscious of our healthy eating habits and not crave anything bad for us the other six days. This plan has worked wonders for me and will work for you, too should you decide to give it a try. I have a friend that uses this exact same approach and it works wonders for her as well. She is also epileptic.
Alternative Therapies - Non Invasive
Yoga
Herbs
H-Coil (deep brain stimulation for temporal-lobe epilepsy)
Acupuncture
Excerpt From acupunctureamerica.com/acupuncture_epilepsy.html
Studies in China have shown acupuncture to be a safe, reliable way to reduce or lower seizure activity. However fewer than 5 percent of Chinese studies on acupuncture have been translated into English. One study indicated that treatment of epilepsy with herbs, acupuncture and massage had the best results.
One German study involved 98 people with epilepsy, ranging in age from 2-52. All drugs were discontinued during the first weeks of therapy. Acupuncture treatments lasted from 1 - 18 months, and 65 people showed marked improvements with an absence of seizures during a one-year period without drugs. Afterwords, patients received acupuncture maintenance treatments once over 2-3 months. Relapses occurred in 5 cases.2 "In my own opinion," says Ruth Livingstone of the British Medical Acupuncture Society, "acupuncture can help relieve some of the problems which exacerbate epilepsy - stress, poor sleep, etc."
In the U.S., most of the research on acupuncture has been done on dogs. In one study of 5 dogs, all had decreased numbers of seizures after being treated with acupuncture. Three continued to have fewer seizures with lower levels of anticonvulsants; the other two dogs also had a reduction in seizures.
Meditation
Excerpt From Livingstrong.com
Some studies report that meditation may reduce the incidence of seizures in epileptics. A study published in 2006 in the "Journal of Alternative and Complementary Medicine" documented the efficacy of a combined three-month yoga and meditation program on 20 documented epileptics. The study found that in all but one case, the number of seizures the patients had was reduced by at least 50 percent. This study indicates that seizures may indeed be reduced in patients who practice meditation.
Gamma Knife Radiation
Excerpt from professionals.epilepsy.com
Author: Howard L. Weiner, MD and Orrin Devinsky, MD
Recent data suggest that Gamma Knife Radiosurgery can be used with acceptable safety and efficacy in patients with medial temporal lobe epilepsy and offers a potentially valuable modality to provide long-term seizure control in patients with a single temporal lobe seizure focus. This procedure may offer a way to treat patients effectively whom have a single, well-defined seizure focus and avoid the risks associated with a craniotomy.
Regis and colleagues reported the results of a collaborative study from three centers in Europe (1). Twenty-one patients were selected, whose pre-surgical evaluation revealed a mesial temporal lobe focus. Radiosurgery was performed in all 21 in place of anterior temporal lobectomy. The Leksell Gamma Knife® (Elekta Instruments, Inc., Atlanta, GA and Stockholm, Sweden) was used at all centers, and the target was the basal and lateral part of the amygdala, the anterior hippocampus (head and body), and the anterior parahippocampal gyrus. Of the 21 patients, 20 were available for follow-up at 2 years. The median seizure frequency was reduced from a baseline of 6.16 per month to 0.33 per month at the 2-year follow-up. At 2 years, 65% of the patients were free of seizures. Quality-of-life measures improved significantly for mental health and role functioning. Limits of the procedure include an initial period of increased seizures, and a delay until seizures are reduced or fully controlled. It should be noted that all patients experienced a transient increase in their seizures before there was a decrease.
Side effects included transient increase in seizures, symptoms of radiation-induced tissue changes, and visual field deficits. (this repeats a statement in the preceding paragraph). These were usually auras, although 1 patient experienced a cluster of seizures with Todd’s paralysis and required hospitalization 12 months after the gamma knife surgery. The most significant but transient MRI changes of radiation-induced tissue changes occurred around 12 months after treatment. This corresponded to the time when 5 of 20 patients developed headache, nausea, vomiting, depression, and dizziness. Corticosteroids were used to treat the disorder in 62% of patients. Three patients required hospitalization for the severity of these symptoms and parenteral administration of corticosteroids. Visual fields revealed new quadrantic deficits in 10 patients (attributed to injury to the optic radiation) and 1 patient with a hemianopia (attributed to injury to the optic tract). There were no neuropsychological deficits, including verbal memory or naming impairment.
The success rate suggested by this study is similar to that reported following standard temporal lobectomy. However, the risks associated with traditional temporal lobe epilepsy surgery are low (less than 1% mortality and under 3% morbidity), so one must question why gamma knife radiosurgery, with its associated side effects, would be necessary as an alternative to open surgery. Furthermore, whereas the long-term benefits of temporal lobectomy are well-documented, the late success of gamma knife in this condition is unknown. Future studies will address late effects, as well as the utility of this approach in patients with refractory epilepsy associated with other brain lesions, such as cortical dysplasia and hypothalamic hamartoma.
Stem Cell Therapy
Approximately 1% of the population has epilepsy. While most patients gain control of their seizures from medications, those with intractable focal epilepsies may respond to umbilical cord stem cells.
Seizures have numerous underlying causes. One such cause could be an attempt of the brain to increase neurogenesis (the development of new neurons and/or neural growth factors) for the repair and replacement of dead or dysfunctional brain cells. Multipotent cord stem cells have the ability to stimulate regenerative processes in the brain, either directly or through the release of neural growth factors.
There have been three patients who were treated with umbilical cord stem cells in Mexico who reported that their seizures were significantly reduced in number and severity within 30 days of the treatment. Medications were correspondingly reduced and in some cases, no longer needed. Adenosine release from stem cell implants has also been reported to significantly reduce seizures in rat models of epilepsy. In addition, there is research support for the use of cord stem cells transfected with the genes of deficient neurotransmitters such as GABA, or deficient peptides such as galanin or neuropeptide Y. Click Here for research on epilepsy and stem cell therapy.
Aroma Therapy (Excerpt from www.coping-with-epilepsy.com)
Aromatic substances have a direct effect on the smell receptors at the end of the olfactory nerve (the first cranial nerve) at the top of the nose : this nerve runs into the primitive part of the brain which receives smell . Aromatic substances are also fat soluble: so a massage with a diluted aromatic oil means that some of the active constituents of the oil will penetrate the skin easily and get into the blood stream without first having to go through the liver (which would break them down). It is possible then that some of these active constituents in small amounts will go straight to the brain. In conventional aromatherapy massage therefore the recipient is not only possibly receiving pharmacologically active compounds through the skin and going to various target organs including the brain, but is also able to smell the oil, as well, which may also be part of the therapeutic process, as is the massage itself.
Neurofeedback (Biofeedback procedure done on the Brain)
Neurofeedback is better known as EEG Biofeedback as it targets the brain. This method alters tha brainwaves and is used to treat a multitude of diseases and disorders such as ADHD (Attention Deficit Hyperactive Disorder,), sleep disorders, epilepsy, cognitive dysfunction due to head trauma, stroke or aging.
Back in 2008, I went down to Dallas, Texas and tried to see what Neurofeedback would do for me vs. brain surgery, Vegus Nerve Stimulator or any other kind of invasive procedure. Unfortunately for me, Neurofeedback did not work at all. Any seizure I did have during these tests were not picked up on or I would never get one while going through the procedure.
Invasive Procedures
RNS (Responsive Neurostimulator System) – NeuroPace
The RNS system is surgically implanted under the scalp and connected to one or two leads (insulated wires with four (4) small electrodes at the end). These leads are implanted within the patient’s brain and/or placed on the brain surface, in the area of the presumed seizure origin. The RNS continuously monitors the patient’s brain waves. When seizure activity is detected, the device delivers brief and mild electrical stimulation through the leads in an attempt to suppress seizures.
VNS (Vagus Nerve Stimulator)
Similar to a pacemaker, a Vagus Nerve Stimulator (VNS) is a small device implanted under the skin by the collarbone. A wire under the skin connects the device to the vagus nerve in the neck. The doctor / surgeon will program the device to produce weak electrical signals that travel along the vagus nerve to the brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures.
After it is implanted in the chest, the battery-powered device can be programmed from outside the body by the doctor / surgeon. There is also a hand held magnet the user can operate to turn the device on if they feel a seizure about to start. And turn it off if it is causing unpleasant side effects. The VNS can cause voice change / hoarseness, cough, tickling of the throat as well as shortness of breath. In some cases it may cause children to become hyperactive.
It takes about 2 hours to surgically implant the VNS device in the chest
The Vagus Nerve Stimulator may start to show results immediately after the surgery is completed. There will most probably be a slight bulge in the area under the collarbone where the device is implanted. And the surgery will leave small scars on the side of the neck where the wire lead was placed and on the chest where the device was implanted.
The Vagus Nerve Stimulator may reduce the frequency of partial seizures that do not respond well to medicine and may make them less severe. It is used along with anti-epileptic medicines or epilepsy surgery to control partial seizures.
Intercept™ Epilepsy Control System – Medtronic
The therapy is designed to disrupt the circuits suspected of influencing epileptic seizures. The system provides bilateral brain stimulation using three implantable components: a neurostimulator (implanted in the chest), extensions (two small, insulated wires that are threaded from the neurostimulator to the head) and leads (electrodes that are implanted in the thalamus). The neurostimulator generates electrical pulses that are delivered directly to the brain by the extensions and leads. These pulses can be non-invasively adjusted by a clinician from a physician programmer and transmitted via telemetry to the implanted device.
In addition to the ongoing stimulation pre-programmed by the physician, patients can activate additional stimulation when they sense an oncoming seizure. Patients activate additional stimulation through a hand-held programmer that resembles a remote control.
Brain Surgery
While even worse, brain surgery may cause severe headaches and numbness at the location of surgery. (I cut into my knuckle with a butcher knife while I was cooking not due to epilepsy but just being clumsy and it feels very sensitive when it is touched.) I cannot imagine the side effects that brain surgery may cause. Doctors will try and sway you…neurologists and surgeons alike that “the risk is minimal.” Yet they do not believe in even trying a naturalistic treatment BEFORE doing surgery because it is not in any of there medical books that they graduated with nor does that generate any income for them. The same thing holds true with supplementation.
Okay…I fully understand that we are on prescription medication for a reason; and that it lies between either taking the medication to control the seizure or suffering the consequences. I truly get it. At this point in time, prescription medications are the quickest, fastest and most convenient way to control epilepsy without resorting to any kind of invasive procedure on the body. However, we are only pulling the weeds (masking the terrain with medication), and not getting the entire root (fixing the area where the disorder or disease comes from.) In some cases surgery is an option. But if you are like me you’ll live with the occasional seizure or aura (Depending on your severity) and curtail having a VNS (Vagus Nerve Stimulator) implanted or worse yet, the trauma of brain surgery. And as we all know, the side effects of medications and surgeries are sometimes brutal including life threatening side effects like I had with Zonegran.
On of my biggest frustrations has everything to do with the pharmacy. They always seem to be out of medication when it is ordered. That is where I want to advise anyone and everyone, especially parents of young children to always be sure and call your prescriptions into the pharmacy a week in advance unless you are able to get them in a three month supply in the mail depending on your insurance plan. It’s really frustrating when we as epileptics have to pay twice for a taxi ride to the pharmacy for something that is entirely not our fault. One time I get to the pharmacy and just as she is about to ring it up she states, “we were only able to fill part of your prescription and we will have the rest tomorrow.”
To top this all off, and I do not know who else holds this opinion…epileptic or not. But did you ever notice that if there is a problem with your insurance…even if they have been dealing with you for months, the pharmacy will not release your medication regardless of the severity until they get cleared by your primary care physician that your medication is “medically necessary” if it is a name‐brand instead of generic? In writing no less!
I feel so bad for the elderly that cannot afford insurance and are not able to pay out of pocket for their medication. One time I almost fell on the floor in amazement. My insurance had not kicked in yet and I had to wait a week or so to get the co‐pay to take effect. So just out of curiosity, I asked the pharmacist over the phone what one of my prescriptions, in this case the Keppra, would cost out‐of‐pocket vs. the three dollar co‐pay when my insurance kicked in. She exclaims “Three Hundred Seventy‐Four Dollars and Forty‐Nine Cents!” Now how would an elderly person on Social Security pay for that when the average two‐income household can’t either?
Also, if you are like me, you know instinctively that there is some naturalistic supplements, foods and other approaches…that if done on a daily and or weekly basis could curtail our seizures down to a minimum at the very least. But doctors, insurance companies and pharmacists are, in my opinion, in bed with each other figuratively speaking to keep there deep pockets full! That’s just plain wrong. Again, that is my opinion. Not a fact. I feel the same way about other diseases. If something is not medically proven, insurance will not cover it. Meanwhile people are living miserable lives because of greed. An acidic body is a breeding ground for disease.
Prescription Drug Tolerance
Since I was old enough to comprehend the effects on my body and mind from prescription medications, I have experienced many effects and patterns that are very crucial for one to understand and look out for. First, there are complications that one may experience from a specific medication such as light‐headed, blurred vision, slurred speech, heart attack, rash, blood clots, nausea and the like. Every pill gives its own set of ill effects in lieu of putting seizures to rest. Its like a double edged sword.
You may find, as I have that over time, you build up a tolerance to a specific medication. My classic phase of intolerance to seizure ratio went something like this. I would go about two months getting only small insignificant seizures. Then all of a sudden, I would get one of my zoning‐out seizures. I called it a cycle and could only describe it to people as if you were to take peanut butter and put it on bread in layers one at a time. After a while the bread (you) would not be able to hold anymore peanut butter (small, insignificant seizures) and break like a camels back carrying too much weight. Then the cycle would start all over again.
It is very important to keep a diary on how many seizures are acquired each day as well as the severity of each seizure.
Dietary Therapies
Supplements
In doing an extensive amount of research on vitamin supplements...which is always a work in progress, there are many supplements out on the market today that claim they can help the amount of seizures an epileptic has on a daily basis. This gets very confusing to choose which are right for us to use. Always consult with your physician (You know my opinion on them) and talk about yourself looking into supplements specific towards your needs.
Two recommendations are Omega 3 Fish Oil and extra calcium for women since prescription drugs may have a negative effect on bone density. Fish oil can be purchased flavored. (I like lemon) The benefits of fish oil range from cognitive, psychological and especially neurological disorders.
Ketogenic Diet
There is a diet that doctors will sometimes recommend to parents to start their children on known as the Ketogenic Diet. Just like Omega 3 Fish Oil, the Ketogenic diet is high in fat. (Athletes use this diet as well to burn fat and gain muscle) The premise behind the diet is to virtually trick the body using up all of the stored glucose by starving the body of any food intake whatsoever for twenty four hours. This in turn will force the body to start burning fat since it is now the primary food source that the body is now getting in addition to some but very few carbohydrates. (Roughly a 4 to 1 ratio) The amount of food that one ingests for each meal varies from one child to the next as it depends on the weight of the individual and must be measured precisely by parents unless it is performed in a hospital and administered by staff. This process is almost always done and monitored by a physician. So simply stated, when we eat a normal diet, the body will always burn glucose first before it starts to burn fat. In the method of the Ketogenic diet, the body has very little glucose and therefore must feed off of the fat because that is its primary source of energy. This is the method that produces Ketones in the body (substances derived from fat) which provides fuel to the brain and other organs. This process is not yet understood as to why it can alleviate seizures in some patients other than the theory that higher levels of Ketones tend to better control seizures in some children. One should wait on trying this diet until two or more medications have failed to get the seizures under control.
The diet also seems to work for more than one type of seizure and is also said to be more effective in children. The biggest barrier, and I think we would all agree, is that a child cannot live a “normal” childhood when it comes to hanging around other children. (Eating chips, cookies, candy and the like) Holidays and special occasions are especially difficult...even for parents.
Due to a lack of vitamins and minerals, precautionary measures must be taken. Be cognizant of children who are not yet communicating verbally as possible dehydration and kidney stones may develop so constant water is necessary to avoid these complications. (Alkaline ionized water as it has better penetration in the cells.) Speak to your doctor about getting a bone density test when on the Ketogenic Diet as vitamins and minerals are starved due to lack of natural food uptake.
Children should stay on the diet for a minimum of at least one month to see any results even though some children will take longer...up to three months to see a change. If the results are significant, doctors will suggest weaning or even stopping the medication in some instances. The diet should be done for two consecutive years unless otherwise suggested by your physician. Statistics point to an average of one third of patients who strictly follow the Ketogenic diet to the exact instructions attain significant results ranging from a drop in the amount of seizures to even becoming seizure free.
The Modified Atkins Diet For Seizures
In relation to the Ketogenic diet, the Modified Atkins Diet is geared more toward children as the food that can be consumed is more reasonable and therefore more sustainable for the long haul.
Glutamate Aspartate Restricted Diet (GARD)
There are some fantastic sites I found doing my research on this particular defense against not only epilepsy...but many diseases. Please do your research on these web sites as they are pertinent to our better health and wellness.
http://www.foodallergytest.com/
http://dogtorj.com/
Foods & Ingredients to Stay Away From
First let me say this. There is no food on planet earth that is better for us than mother‐earth provides. However, if produce is grown in massive commercial quantities where the soil is contaminated with pesticides due to massive chemical spraying, the soil then becomes contaminated with pesticides as well as the outer skin of the fruit or vegetable. This is why organics are more expensive. The fruit is not sprayed and there is a lot of work integrated for meeting or exceeding U.S. Standards to label something as “organic.” In addition to that less shelf life plus limited quantities equals higher prices.
The same thing goes for our meat consumption even though we should not eat as much meat as cold fish anyway. Cows and the like are injected with hormones to put more weight on there bodies which in turn yields more meat and thus more money for the seller. But the trade‐off is hormone‐ridden meat that us humans ingest is slowly wreaking havoc on the human body. That in part is why vegetarians are healthier than meat eaters. Once again, buy as much organic, Grass - Fed meat as possible.
Dairy
It was always taught to us as children that dairy is good for us. "It helps promote healthy bone mass and strong teeth!"...our parents would exclaim. However, this is not the case. Purchase the book "The Enzyme Factor" by Dr. Hiromi Shinya and you will get a really huge education as to what I'm talking about. I learned this from his book. Any kind of dairy or milk‐derived product wreaks havoc on the living body. This includes cheese, ricotta, yogurt, pudding, ice cream and anything else derived from dairy. Notice I did not say human body because this relates to all animals. If we look outside our windows and beyond into the wilderness and become attentive enough to how the wild live, we would get an education that not all of our bank accounts combined could pay for...all for free and it could change our lives for the better. After any animal is weaned off of there mothers milk, it drinks water for the rest of there life.
Bottled Water
Every body on planet earth should drink water. Good, clean, pure water that has been untouched by chlorine, lye and other substances used to treat it before it hits our pipes. Water up in the high rockies is the premier water and what we should all drink but obviously that is not reality. Ever wonder what people are doing pulled off to the side of the road collecting water into bottles from a "natural" spring or stream? They know that both tap and bottled water is no good for the body and that even filtering our water supply isn't enough to generate good health and wellness. The water...our tap water...needs to be restructured into ionized, alkaline water so the molecules can penetrate our cells and clean the body very thoroughly. Thus allowing the body to rid itself of toxins and disease. Plastic bottles contain BPA's and are basically poisoning anyone drinking water from those bottles. The water has been sitting on shelves for months before it even gets to market and having a field‐day interacting with the plastic. Get educated on proper healthy drinking water by clicking here.
These are ingredients that do the body absolutely no good at all. Do your best to stay away from them. Again, look at nature and ask yourself if they ingest these ingredients other than natural sugars that come from fresh fruits and berries.
Food Dyes
Here is a list of food dyes and the possible adverse effects they may have on the human body:
Red 3
History of causing thyroid tumors in animals.
D&C Red 33
Cancer in humans, genetic damage to animals.
Red 40
Carcinogenic and mutagenic in animals.
Asorubine, Carmoisine
Red color, coal tar derivative. Possible allergic reactions in asthmatics. Used for confectionary products. Banned in several countries, but not U.S.
Blue 1
Also known as Brilliant Blue and FCF. Suggestions of a small cancer risk. Used in dairy products, sweets and drinks, this is banned in several countries … but not the U.S.
Blue 2
This color is also known as Indigotine, Indigo and Carmine. Study shows brain tumors in mice. May cause nausea, skin rashes, allergic reactions. Banned in Norway, but not the U.S.
Citrus Red 2
Used on some Florida oranges, studies show this additive causes cancer.
Green 3
Possibly carcinogenic.
Green S
Used in canned peas, mint jelly and cake mixes. Banned in Norway and Sweden, but not the U.S.
FD&C Yellow 5
Also known as Tartrazine. Cancer, allergen, breathing difficulties and asthma attacks. Found in packaged soup, sweets, jams and cereals. Banned in several countries, but not U.S.
FD&C Yellow 6
Also known as Sunset Yellow, FCF, Orange Yellow S. Suspected of causing tumors in adrenal glands and kidneys. May cause allergies, hyperactivity, and chromosomal damage. Banned in Norway but not the U.S.
Annatto
Also known as Arnatto, Bixin and Norbixin. Skin, gastrointestinal, airway and central nervous system reactions reported.
Raw Flour
Sugar
Aspartame (for an inside look on how dangerous this is, click here.)
Wheat
Barley
Soy
Corn - This is a very long story and incorporates why corn as well as all grains are bad for the body. To learn more, Click Here.
Dairy of any kind (Casein is the culprit)
Gluten
Preservatives
Boxed Goods
Foods To Buy
Organic Produce
Herbs (Organic - Jarred & Fresh)
Organic Meats (Grass-Fed & Non‐Hormone)
Organic Eggs
Fresh Fish & Seafood (Wild)
Nuts & Seeds (Raw)
All Forms of Dried Fruits (craisins, dates, figs, raisins, currents, prunes, etc.)
Be sure that all meats that are purchased are "Grass Fed." This is important as the majority of meat we eat such as chicken is grain fed. Soy, wheat, corn and other grains are, contrary to popular belief, are not good for us. In fact, these grains are what are used to make commercial‐grade adhesives / glues with. See "Resources" tab for websites on grass fed meats. One time I was opening a brand new jar of well-known oats and the safety seal on it read "Made From Corn!"
Snacks
We all love a good snack once in a while, right? However, not all snacks are created equally. Not just in flavor but more importantly the ingredients it is made with. It is very important to buy as much organic snacks as possible. The selection is wide and is getting even bigger as people are becoming more and more health conscious. The biggest thing that needs to be kept in mind when purchasing any kind of food, even snack foods and processed foods such as potato chips is to read the label and be sure there are no preservatives in the product. I am not a fan of anything that comes out of a box, bag or can as it has not come from mother nature but some times we deserve a treat.
Balance Your Weekly Diet
It is very important to have balance in our lives as far as diet is concerned. As mentioned above, we have a lot of foods we need to steer clear of to try and keep ourselves free of seizures as well as maintain a healthy body. However, I am a big believer in balancing our lives with some pleasure. In this case, eating whatever we wish to one day per week. I pick Sunday as my “day off.” I eat anything I want to such as my home baked desserts, Italian bread, pizza, pancakes, french toast, bacon, sausage, cheese, etc. This allows us to not only stay on track during the week by eating healthy since we know we have that free day coming up. It also allows us to stay conscious of our healthy eating habits and not crave anything bad for us the other six days. This plan has worked wonders for me and will work for you, too should you decide to give it a try. I have a friend that uses this exact same approach and it works wonders for her as well. She is also epileptic.
Alternative Therapies - Non Invasive
Yoga
Herbs
H-Coil (deep brain stimulation for temporal-lobe epilepsy)
Acupuncture
Excerpt From acupunctureamerica.com/acupuncture_epilepsy.html
Studies in China have shown acupuncture to be a safe, reliable way to reduce or lower seizure activity. However fewer than 5 percent of Chinese studies on acupuncture have been translated into English. One study indicated that treatment of epilepsy with herbs, acupuncture and massage had the best results.
One German study involved 98 people with epilepsy, ranging in age from 2-52. All drugs were discontinued during the first weeks of therapy. Acupuncture treatments lasted from 1 - 18 months, and 65 people showed marked improvements with an absence of seizures during a one-year period without drugs. Afterwords, patients received acupuncture maintenance treatments once over 2-3 months. Relapses occurred in 5 cases.2 "In my own opinion," says Ruth Livingstone of the British Medical Acupuncture Society, "acupuncture can help relieve some of the problems which exacerbate epilepsy - stress, poor sleep, etc."
In the U.S., most of the research on acupuncture has been done on dogs. In one study of 5 dogs, all had decreased numbers of seizures after being treated with acupuncture. Three continued to have fewer seizures with lower levels of anticonvulsants; the other two dogs also had a reduction in seizures.
Meditation
Excerpt From Livingstrong.com
Some studies report that meditation may reduce the incidence of seizures in epileptics. A study published in 2006 in the "Journal of Alternative and Complementary Medicine" documented the efficacy of a combined three-month yoga and meditation program on 20 documented epileptics. The study found that in all but one case, the number of seizures the patients had was reduced by at least 50 percent. This study indicates that seizures may indeed be reduced in patients who practice meditation.
Gamma Knife Radiation
Excerpt from professionals.epilepsy.com
Author: Howard L. Weiner, MD and Orrin Devinsky, MD
Recent data suggest that Gamma Knife Radiosurgery can be used with acceptable safety and efficacy in patients with medial temporal lobe epilepsy and offers a potentially valuable modality to provide long-term seizure control in patients with a single temporal lobe seizure focus. This procedure may offer a way to treat patients effectively whom have a single, well-defined seizure focus and avoid the risks associated with a craniotomy.
Regis and colleagues reported the results of a collaborative study from three centers in Europe (1). Twenty-one patients were selected, whose pre-surgical evaluation revealed a mesial temporal lobe focus. Radiosurgery was performed in all 21 in place of anterior temporal lobectomy. The Leksell Gamma Knife® (Elekta Instruments, Inc., Atlanta, GA and Stockholm, Sweden) was used at all centers, and the target was the basal and lateral part of the amygdala, the anterior hippocampus (head and body), and the anterior parahippocampal gyrus. Of the 21 patients, 20 were available for follow-up at 2 years. The median seizure frequency was reduced from a baseline of 6.16 per month to 0.33 per month at the 2-year follow-up. At 2 years, 65% of the patients were free of seizures. Quality-of-life measures improved significantly for mental health and role functioning. Limits of the procedure include an initial period of increased seizures, and a delay until seizures are reduced or fully controlled. It should be noted that all patients experienced a transient increase in their seizures before there was a decrease.
Side effects included transient increase in seizures, symptoms of radiation-induced tissue changes, and visual field deficits. (this repeats a statement in the preceding paragraph). These were usually auras, although 1 patient experienced a cluster of seizures with Todd’s paralysis and required hospitalization 12 months after the gamma knife surgery. The most significant but transient MRI changes of radiation-induced tissue changes occurred around 12 months after treatment. This corresponded to the time when 5 of 20 patients developed headache, nausea, vomiting, depression, and dizziness. Corticosteroids were used to treat the disorder in 62% of patients. Three patients required hospitalization for the severity of these symptoms and parenteral administration of corticosteroids. Visual fields revealed new quadrantic deficits in 10 patients (attributed to injury to the optic radiation) and 1 patient with a hemianopia (attributed to injury to the optic tract). There were no neuropsychological deficits, including verbal memory or naming impairment.
The success rate suggested by this study is similar to that reported following standard temporal lobectomy. However, the risks associated with traditional temporal lobe epilepsy surgery are low (less than 1% mortality and under 3% morbidity), so one must question why gamma knife radiosurgery, with its associated side effects, would be necessary as an alternative to open surgery. Furthermore, whereas the long-term benefits of temporal lobectomy are well-documented, the late success of gamma knife in this condition is unknown. Future studies will address late effects, as well as the utility of this approach in patients with refractory epilepsy associated with other brain lesions, such as cortical dysplasia and hypothalamic hamartoma.
Stem Cell Therapy
Approximately 1% of the population has epilepsy. While most patients gain control of their seizures from medications, those with intractable focal epilepsies may respond to umbilical cord stem cells.
Seizures have numerous underlying causes. One such cause could be an attempt of the brain to increase neurogenesis (the development of new neurons and/or neural growth factors) for the repair and replacement of dead or dysfunctional brain cells. Multipotent cord stem cells have the ability to stimulate regenerative processes in the brain, either directly or through the release of neural growth factors.
There have been three patients who were treated with umbilical cord stem cells in Mexico who reported that their seizures were significantly reduced in number and severity within 30 days of the treatment. Medications were correspondingly reduced and in some cases, no longer needed. Adenosine release from stem cell implants has also been reported to significantly reduce seizures in rat models of epilepsy. In addition, there is research support for the use of cord stem cells transfected with the genes of deficient neurotransmitters such as GABA, or deficient peptides such as galanin or neuropeptide Y. Click Here for research on epilepsy and stem cell therapy.
Aroma Therapy (Excerpt from www.coping-with-epilepsy.com)
Aromatic substances have a direct effect on the smell receptors at the end of the olfactory nerve (the first cranial nerve) at the top of the nose : this nerve runs into the primitive part of the brain which receives smell . Aromatic substances are also fat soluble: so a massage with a diluted aromatic oil means that some of the active constituents of the oil will penetrate the skin easily and get into the blood stream without first having to go through the liver (which would break them down). It is possible then that some of these active constituents in small amounts will go straight to the brain. In conventional aromatherapy massage therefore the recipient is not only possibly receiving pharmacologically active compounds through the skin and going to various target organs including the brain, but is also able to smell the oil, as well, which may also be part of the therapeutic process, as is the massage itself.
Neurofeedback (Biofeedback procedure done on the Brain)
Neurofeedback is better known as EEG Biofeedback as it targets the brain. This method alters tha brainwaves and is used to treat a multitude of diseases and disorders such as ADHD (Attention Deficit Hyperactive Disorder,), sleep disorders, epilepsy, cognitive dysfunction due to head trauma, stroke or aging.
Back in 2008, I went down to Dallas, Texas and tried to see what Neurofeedback would do for me vs. brain surgery, Vegus Nerve Stimulator or any other kind of invasive procedure. Unfortunately for me, Neurofeedback did not work at all. Any seizure I did have during these tests were not picked up on or I would never get one while going through the procedure.
Invasive Procedures
RNS (Responsive Neurostimulator System) – NeuroPace
The RNS system is surgically implanted under the scalp and connected to one or two leads (insulated wires with four (4) small electrodes at the end). These leads are implanted within the patient’s brain and/or placed on the brain surface, in the area of the presumed seizure origin. The RNS continuously monitors the patient’s brain waves. When seizure activity is detected, the device delivers brief and mild electrical stimulation through the leads in an attempt to suppress seizures.
VNS (Vagus Nerve Stimulator)
Similar to a pacemaker, a Vagus Nerve Stimulator (VNS) is a small device implanted under the skin by the collarbone. A wire under the skin connects the device to the vagus nerve in the neck. The doctor / surgeon will program the device to produce weak electrical signals that travel along the vagus nerve to the brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures.
After it is implanted in the chest, the battery-powered device can be programmed from outside the body by the doctor / surgeon. There is also a hand held magnet the user can operate to turn the device on if they feel a seizure about to start. And turn it off if it is causing unpleasant side effects. The VNS can cause voice change / hoarseness, cough, tickling of the throat as well as shortness of breath. In some cases it may cause children to become hyperactive.
It takes about 2 hours to surgically implant the VNS device in the chest
The Vagus Nerve Stimulator may start to show results immediately after the surgery is completed. There will most probably be a slight bulge in the area under the collarbone where the device is implanted. And the surgery will leave small scars on the side of the neck where the wire lead was placed and on the chest where the device was implanted.
The Vagus Nerve Stimulator may reduce the frequency of partial seizures that do not respond well to medicine and may make them less severe. It is used along with anti-epileptic medicines or epilepsy surgery to control partial seizures.
Intercept™ Epilepsy Control System – Medtronic
The therapy is designed to disrupt the circuits suspected of influencing epileptic seizures. The system provides bilateral brain stimulation using three implantable components: a neurostimulator (implanted in the chest), extensions (two small, insulated wires that are threaded from the neurostimulator to the head) and leads (electrodes that are implanted in the thalamus). The neurostimulator generates electrical pulses that are delivered directly to the brain by the extensions and leads. These pulses can be non-invasively adjusted by a clinician from a physician programmer and transmitted via telemetry to the implanted device.
In addition to the ongoing stimulation pre-programmed by the physician, patients can activate additional stimulation when they sense an oncoming seizure. Patients activate additional stimulation through a hand-held programmer that resembles a remote control.
Brain Surgery
While even worse, brain surgery may cause severe headaches and numbness at the location of surgery. (I cut into my knuckle with a butcher knife while I was cooking not due to epilepsy but just being clumsy and it feels very sensitive when it is touched.) I cannot imagine the side effects that brain surgery may cause. Doctors will try and sway you…neurologists and surgeons alike that “the risk is minimal.” Yet they do not believe in even trying a naturalistic treatment BEFORE doing surgery because it is not in any of there medical books that they graduated with nor does that generate any income for them. The same thing holds true with supplementation.
Visualase MRI - Guided Laser Technology For Neurosurgery
I have been on countless amounts of drugs to try and control my seizures but none have helped me. And since December of 2007, I have had to stop driving due to an outbreak of a few Grand Mal seizures. Since having my own business a few years back, it has been hard to get any kind of momentum going since I cannot get out of my home and promote the business due to not being able to drive and therefore, I have kept my ears and eyes open for any new forms of non - invasive therapy for my kind of epilepsy. (Left Temporal Lobe)
In February of 2013, my epileptologists group started holding monthly webinars for its patience and back in early March, I learned of a relatively new, minimally invasive technology called Visualase MRI - Guided Technology. This really got my attention because I am not open to having surgery as I do not like the idea of a large portion of my skull being removed. When I saw this technology being explained on the webinar, I knew I had to learn more so I made an appointment with a doctor three hours from me and found out I am a candidate for this surgery and will most likely be getting it in the near future. And if it works for me, I can really start to build my business the way I'd like to.
Here is an excerpt right from the website listed in the "Resources" section and below for your convenience:
"Treating brain lesions can be difficult. The blood-brain barrier, which normally serves to protect the brain and spinal cord from damaging chemicals getting into those structures, also keeps out many types of drugs. Surgery can be difficult and risky due to proximity to critical structures, and radiation therapy can damage healthy tissue. Visualase is a new technology that might be of great benefit to some patients. Visualase is a laser technology that utilizes light energy to destroy soft tissue including tumor or damaged tissue. Laser energy is delivered to the target area (the lesion) using a laser probe. As light is delivered through the laser probe temperatures in the target area begin to rise, destroying the unwanted tissue."
For further information right from the website, CLICK HERE
In February of 2013, my epileptologists group started holding monthly webinars for its patience and back in early March, I learned of a relatively new, minimally invasive technology called Visualase MRI - Guided Technology. This really got my attention because I am not open to having surgery as I do not like the idea of a large portion of my skull being removed. When I saw this technology being explained on the webinar, I knew I had to learn more so I made an appointment with a doctor three hours from me and found out I am a candidate for this surgery and will most likely be getting it in the near future. And if it works for me, I can really start to build my business the way I'd like to.
Here is an excerpt right from the website listed in the "Resources" section and below for your convenience:
"Treating brain lesions can be difficult. The blood-brain barrier, which normally serves to protect the brain and spinal cord from damaging chemicals getting into those structures, also keeps out many types of drugs. Surgery can be difficult and risky due to proximity to critical structures, and radiation therapy can damage healthy tissue. Visualase is a new technology that might be of great benefit to some patients. Visualase is a laser technology that utilizes light energy to destroy soft tissue including tumor or damaged tissue. Laser energy is delivered to the target area (the lesion) using a laser probe. As light is delivered through the laser probe temperatures in the target area begin to rise, destroying the unwanted tissue."
For further information right from the website, CLICK HERE
