So Frustrated! 2nd Seizure and no answers

[knothing]

RobinN I have read your profile and am going to let you know I understand how it is to be a parent of a child with a tough problem. My son has Tourette's Syndrome and the only way to manage himself in school so he can learn is though medication because there is no cure. It took my wife and I 2 years to get him manageable for school. We took our time and and held off of medicine for the longest time until he had no other avenues to go down.

As for me I had head trauma as a 4 yr old and have always had small seizure but no one was every aware of them. Through my life I have had several concussion ( all just odd circumstance) and after all the testing I went through the only way (given current medical advances) they can determine the root cause is to dissect my brain when I die. For me and several others I have come to know we have E and refuse to let it be a label. We do what we can to manage the seizures so our lives can move forward. There is no cure for most (as of yet) and for some they cannot even control the seizures.

Until you have found yourself on the floor after a Grand Mal you have no clue how terrifying this can be when it is you. I am truly sorry for what your child has suffered from and hopefully she will never have another seizure again but until you are in the position of the one suffering a seizure you can have no true idea. I am sorry for the bluntness of this message but I do agree with you on investigating and finding a doctor that will work with you not against you.

[RobinN]

I guess we are going to have to agree to disagree. How is it that the Andrews Reiter Center has an 80%+ success rate.

Given the current information being shared on the recovery of children on the autistic spectrum, I am not willing to agree that there is no cure. Many parents are finding ways to heal their children. It is old school now to think that ASD is a dead end street.
I know for a fact that there is also current work being done in the Tourette Syndrome community, with similar results.

Dogtor J has been able to recover all of his animals with seizure disorders, simply by changing diet. Since animals are used to test drugs, why does it not follow that we too can be relieved of seizure disorders by making nutritional changes. Problem is, we humans aren't willing to pull ourselves from the standard contemporary diet.

If there is proof that neurofeedback can train the brain to stabilize itself, then we will never know if it will help those in any situation. We need to begin the trials. I know what I have witnessed, with this therapy, and our bodies are capable of healing given the chance.

You are right, I do not know how terrifying it is to have a seizure. I do know what it is like to be in a fetal position for four days each month with migraines. I dealt with this for 30 yrs, and it was a mineral deficiency that has allowed me to be pain free for the last 4 yrs. I also know what it is like to witness someone having a seizure, and wondering if they are ever going to come out of it. This is what allows me to continue to keep searching for answers.

When our neurologist says that the majority of people don't want to be bothered, or to take the time to search for answers, this might be true. However, I believe, it is my job to inform others of what I have learned, and offer HOPE. I believe for many, and possibly most, there are answers waiting out there for them. We each have to do the work. It is a marathon, not a sprint.

[knothing]

Honestly RobinN the thing we need most is money to fund more research. I went to the web site of the Andrew Reiter Center and I see how closely they screen their patients. I would be rejected based on the fact that I have had a myoclonic seizure. Based on how many people in the US suffer from this they really have a limited pool of people in over 2 decades of work(well under 1%). But in the end after reading it all the conclusion is that they creating a control for only a specific group and as we all know control is still not a cure.
Not to load you with more ammo against drug therapy for control but a recent study took a control group of patients on older E drugs and switched them to newer drugs such as Keppra. They saw a significant decrease in cholesterol after switching drugs.

As far as cures go saying there is no cure is just a reminder that we don't have one yet.

[purpleme]

But..

I just bought two books that I have found so incredibly helpful already.

1) Prescription for Nutritional Healing - reference for drug free remedies - ISBN: 158333236-7
2) Prescription for Herbal Healing - reference for herbal remedies - ISBN: 0-89529-869-4

I will post more later as I read about it but here are some things I found already:

The herb SAGE should be avoided at all costs.
Excess folic acid may increase seizure activity
Alfalfa is a good source of needed minerals
Avoid zinc
Take 2 TB olive oil daily
Avoid any herbs that change fluid balance or stimulate nervous system - akebia, alisma, aloe, Cornelian cherry, ephedra, green tea, hawthorn, hoelen, Japanese watermelon, lophatherum, mate, mulberry bark, polyporus, and rhubarb root. Children should not be given artemisia, eucalyptus, fennel, hyssop, pennyroyal, rosemary or sage.

Children with sever epilepsy that do not respond to drug treatment are sometimes treated successfully with a ketogenic (high-fat) diet.

In rare cases, seizure disorders in teenagers are caused by celiac diesease.

Anyway - I recommend these books to anyone looking into alternative medicine. I will post more later..

Thanks to everyone for all of the help!

[RobinN]

There is a book section where you can offer a summary, and recommendation then we can help post a link to the book. I have a few more I need to post as well. I do believe knowledge is power.

I am not sure that I would trust the list you have, because there might be some people that might (for example) need extra zinc, and some that would be allergic to alfalfa. We do learn over time that there is no one size fits all.

[purpleme]

Thanks for your feedback! Sure, I realize that some folks have allergies...And this is certainly not a one-size fits all world.. I am still researching alot of what I have been reading but here is some interesting articles about zinc and epilepsy (sorry not allow to post urls yet apparently so if you want the sources send me a message)

Science 19 January 1996:
Vol. 271. no. 5247, p. 269
DOI:

This Week in Science
In the brain, synaptic excitation and inhibition must be carefully balanced. Reduced synaptic inhibition results in hyperexcitability and epilepsy. Paradoxically, in an animal model of temporal lobe epilepsy, inhibition mediated by gamma-aminobutyric acid (GABA) receptors appears to be increased rather than decreased. Buhl et al. (p. 369) found that these GABA receptors are more sensitive to zinc compared to those from normal animals. Zinc can break down the otherwise increased inhibition of neurotransmission mediated by the GABA receptors in temporal lobe epilepsy. Zinc can also be released in the mossy fibers found in the brains of epilepsy patients.

This study was very interesting - here's the abstract and pdf..

In the present study which was aimed to see the effect of zinc on induced convulsive threshold in rats we found that zinc sulfate 100 μg intracerebroventricularly) and pentylenetetrazole (50 mg/kg intraperitoneally) produced dose related seizure activity; however, pretreatment with zinc decreased the threshold, increased the severity, incidence of multiple seizures and total duration of pentylenetetrazole induced seizures. (5 mg/kg intraperitoneally) pretreatment increased the threshold and lowered the incidence of convulsions in zinc induced seizures which further confirms that the convulsive effect of zinc is through inhibition of gamma aimino butyric acid.

From what I have read, zinc can help with a specific type of seizure called febrile.

By C. Vidya Shankar, MD

CHENNAI, India (Reuters Health) - Zinc levels in the blood are significantly lower in children with febrile seizures and may have role in causing them, according to results of a study from India.

Drs. R. Ganesh and Lalitha Janakiraman from the Kanchi Kamakoti CHILDS Trust Hospital, India evaluated zinc levels in 38 previously healthy children between 3 months and 5 in age who were admitted to the hospital with fever-related seizures. The investigators also evaluated 38 similar children, without febrile seizures, who served as a comparison, or "control," group. Blood samples were drawn within 6 hours of admission and zinc levels were estimated using standard methods.

The average zinc level was significantly lower in children with febrile seizures compared with the controls, with levels of 32.17 vs. 87.6 micrograms per decaliter, respectively, the investigators report in the medical journal, Clinical Pediatrics.

Zinc is a micronutrient that is essential for the normal functioning and development of the central nervous system, the researchers explain. It is needed for the synthesis of gamma-aminobutyric acid, an inhibitory neurotransmitter, and complements the inhibitory effects of calcium on the excitatory N-methyl-D-aspartate receptors, they add.

When a patient develops low levels of zinc, the N-methyl-D-aspartate receptors become activated and induce an epileptic discharge in children with high fevers, Ganesh and Janakiraman hypothesized.

Although their study population was small and has the limitation of being hospital based, they conclude that the use of zinc supplements in reducing the rate of febrile seizures in children should be investigated.

SOURCE: Clinical Pediatrics, March 2, 2008.

..."It is not clear whether the complex actions of zinc result in the protection from or the enhancement of seizures".... "No evidence to date to suggest a role of zinc supplements in the treatment of epilepsy"

Wow there are tons of info on this!

INTRODUCTION: Zinc is a fundamental trace element for an adequate nervous system function. It has been suggested that in the brain, a zinc homeostasis alteration may be associated with the genesis of epilepsy, a[lthough it is not yet determined if concentrations of zinc are a cause or a consequence of seizures. Another poorly studied aspect is the relationship between antiepileptic drugs and the neuronal zinc behaviour. DEVELOPMENT: We perform a systematic review of the literature to evaluate the role that zinc plays in epilepsy as well as the antiepileptic effect of zinc concentrations. Databases such as MEDLINE, EMBASE, SCISEARCH and LILACS were consulted from January 1974 to July 2005. All articles published in English and Spanish were considered. A manual review of the references present in each article was done in order to identify the articles that the electronic search may have not found itself. The title and abstract of the potential articles were analyzed before asking for the complete article. However, articles that seemed ambiguous were completely analyzed later to establish their relevance. CONCLUSIONS: Clinical research in epilepsy presented contradictory results. In fact, the reviewed studies, both animal and human, did not give enough evidence to determine if organic zinc variations are directly related to epilepsy. Most of them gave not statistically significant results.

But I also found a lot saying the opposite with adding zinc supplements... Weird conflicting stuff. Ah well. My intentions are good - this book has loads of useful information...

[RobinN]

I would be rejected based on the fact that I have had a myoclonic seizure.
As far as cures go saying there is no cure is just a reminder that we don't have one yet.

Have you seen this?
Progressive Myclonic Epilepsy treated with NAC

Problem with the cure is it can be a one size fits all. Truly for some it would mean creating a healthy environment in their body. Elimination of seizures a cure... I would think so.

[RobinN]

Zinc
Dandruff shampoo fights epilepsy?
A Natural Way I heard to treat Epilepsy, take a look this, lol
Cellular Nutrition
Zinc

a few to begin with

[atl]

If a person has 2 seizures, they are labeled as having epilepsy.

actually that is not true.

[RobinN]

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more seizures, they are considered to have epilepsy.

http://www.epilepsyfoundation.org/about/

Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.

http://www.epilepsy.com/101/ep101_epilepsy

Can you give us your definition and reference?

[Belinda5000]

Purple, you have to have at least 2 seizures for it to be epilepsy.
The side effects can go away in 2-4 weeks except with most of them.
They do with me me except with drowsiness completely.
I've had epilepsy which I prefer to call a seizure which it also since I was 2 yrs old. Belinda

[Cint]

Problem with the cure is it can be a one size fits all. Truly for some it would mean creating a healthy environment in their body. Elimination of seizures a cure... I would think so.

So, how does one know for sure if they have been "cured"?

What if I go 10-20 years without a seizure doing all the right things, then *BOOM* a seizure hits again. I thought I had been cured?!

IMO, I think a "cure" for epilepsy is a long way off!

[jgbmartin]

Hi, Welcome to our group, glad you found us!
I got diagnosed last year with seizures, at age 47. Doc told me that 90% of people with seizures disorders can not be traced to the cause. I had severe trauma in May 2006, had multiple severe infections, almost lost my arm, etc...so when they told me I was having seizures, my reaction is "what else is going to happen". Doc say they believe either one of the infections or my IV meds caused the damage that started seizures, but no way to confirm that.
I found this forum and it has been a blessing to educate me and talk with others going thru same emotions, etc.
Jennifer

[RobinN]

So, how does one know for sure if they have been "cured"?

What if I go 10-20 years without a seizure doing all the right things, then *BOOM* a seizure hits again. I thought I had been cured?!

IMO, I think a "cure" for epilepsy is a long way off!

Perhaps this is why with other neurologist disorders they call this regression and recovery. Perhaps we need to view it in a similar manner or as symptoms vs no symptoms.

I have never said that everyone falls into this category however, if the person with the seizure disorder, has never tried any other therapy (giving it 100%) other than meds, they will never know if recovery is possible. Also it stands to reason that if those same people have other symptoms (intestinal disorders, blood sugar imbalances, endocrine disorders, weight issues, allergies, etc) that are curable with alternatives, it is my opinion and the opinion of others that the seizure disorder can possibly be controlled when the body is healed.

Of course these are my views, and the not necessarily the views of the establishment

[skillefer]

Yes, but luckily, this establishment is a great place to bring ALL views to the table...so that we can discuss and learn from each other. Heaven knows that I've added some things to my day to help me cnotrol my seizures that I've learned here from you Robinn. Like the magnesium. It's nice to not have PMS, and no more constipation...and that's even while pregnant! .....LOL....so thank you for all the info Robinn.

[RobinN]

Yes and I hope others are okay with me stateing my views as honestly as I can without any bad feelings, because I have no one else to bounce my ideas off of. I certainly have learned from others as well. It helps me in my decision making. I also know that this is a small % of the numbers dealing with this disorder. If they are feeling great, they rarely will frequent a site like this.

I am just overwhelmed by the numbers that are dealing with horrible med side effects and a reduced quality of life. Many have never given alternatives a honest trial, yet will say they just do not work. I am here to offer encouragement, because meds have in the long run let me down over time. Alternatives have enhanced my life.

[Cint]

I'm ok with you posting your views, Robin, as long as you're ok with other's views also.

Let me clarify what I said earlier. What I meant by "doing all the right things" was if I had tried meds and they didn't work so then went down the alternative route with control of the seizures, only to start having seizures years later? I thought I had been cured/healed.

Honestly, tho, I don't like the horrible side effects of the meds, but am reluctant to go strictly the alternative route because of the "condition" of my condition. Had I known more about it back in 1990, I would have gone down that route rather than have BRAIN surgery, that's for sure!! I would never suggest that surgery to anyone.

I also have Type 1 diabetes and am not going to go the alternative route with that one either, although, I do believe if it were Type 2, it could be controlled with diet. But I do strictly watch my diet and exercise because exercise definitely lightens my moods. I do believe all of America needs to clean up their diets!!

[RobinN]

I think I have no choice but to be tolerant of others views, because that is the conventional treatment. I would not be able to use my insurance, if I was not tolerant. Everyone hears about conventional treatments. Easy to do a Google search, or go on the Epilepsy sites and find them. It is rare that the non-conventional are discussed in a doctors office. This saddens me, because I know how helpless I felt each time I took my daughter in.

My purpose in stating my views so adamently is that these therapies are not widely known. If I had never come to this site, I would not have learned about neurofeedback. If I had never befriended DogtorJ, I would not have been introduced to the fact that certain foods could be causing my daughters seizures. Stan Kurtz has explained it in different words. There are also quite a few people that have been helped by my personal experience with magnesium and the discussion of the different types.

I am vocal, and am willing to shout this out to anyone willing to listen. I apologize if it goes against anyone's beliefs. However, the majority only hear one side, and that is meds or surgery.... nothing else. I make every attempt to post that this is my opinion, or my experience. It certainly isn't gospel, but it is working for us. Even if I introduce another type of treatment to one person, it makes my day brighter. I receive quite a few PMs that are thankful for the links and information, so that they have some ray of hope to discuss with their doctor or loved ones. It isn't easy to go against the grain.

I think I was less fearful, due to the fact that we have only been dealing with this disorder for 3 years. I knew that for 14 yrs my daughter was fine. Aside from some learning difficulties, eczema, and constipation, life was actually pretty darn good for her. Over night it changed. Before this happened I was certainly happy to follow conventional treatments. My eyes were opened to a bigger picture, and my instincts have guided me after the conventional treatments let us down. I realized that there must be a good number of others suffering in the attempt to make sense of this. So I pound the pavement here at CWE with Rebecca's story.

Thank you Bernard, for allowing me the opportunity.