Just Swinging In For The First Time

MonkeyBoy

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Hi All,

I have been reading many, many posts for the past several weeks trying to learn as much as I can in order to be able to help a family member as much as I can. They have started having seizures 9 months ago - Grand Mals and averaging about 1 seizure about every 4-6 weeks. He has not had any in the last 3 months. The neurologist ran what seems like the standard set of tests only to conclude that they are epileptic and that he wants to put them on heavy doses of prescription medicines.

This is not agreeable with my relative. They are very active and lives a healthy lifestyle through diet and exercise. Their desire is to seek natural means and try those first before any chemicals.

This being said who here is also on that course and having good results? Please if you do not have the experience in this area refrain from replying so that I can get the facts as fast and clear as possible.

Thank you for your time and for any future assistance. I wish you all the best!

MonkeyBoy
 
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I'm trying natural remedies. I don't have t/cs so not sure if you'd want this response or not. But taking B complex, B6, mg/cacium, fish oil. Eating healthy and excercising. Getting plenty of sleep and staying low stress as much as possible (two triggers for me). Don't notice a decrease in seizure activity, BUT, feel much better between seizures than on Rx meds. Hope this is helpful.
 

Bathtub

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Welcome MonkeyBoy. I am in similar position, my relative just had another seizure so cannot deny this any longer, but really does not wish to take medication. Is facing the difficult decision to cut out alcohol completely and always get to bed early, tiredness and drinking seems her triggers, but this will be very hard choice to implement as she loves to party with her friends. I wish you well and you will find good infomation and encouragement here.
 

Bathtub

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Just to add that if your relative is female, then the pattern of one seizure every 4-6 weeks could be related to the hormonal cycle, this is called catamenial epilepsy and can be treated, even knowing the more "at-risk" times of the month (premenstrual and aroudn ovulation) is a help so she knows when it is most essential to get that good night's sleep.
 

MonkeyBoy

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Thank you all for the fast replies to my plea for help. I looked at the link Silat before. I noticed one thing on there in addition to what my relative has adopted already (ketogenic diet, 7-8 hours sleep, no alcohol) and that is Piracetam. I had read about it in other places and was wondering if those that are on no meds have tried it and if so what results? Who here is using just natural supplements and personal actions to slow or stop their seizures?

My relative is a male in his late 30s and very private - why I am the one doing this and not him.

To add to my initial thoughts after reading through the Forum here for a while now is the overwhelming numbers of people that suffer from seizures and the number that are on prescription medications - many on multiple ones. It almost makes the situation for my relative seem hopeless to try to control his seizures with natural methods. If I could ask a single question to those of you on medications at this point it would probably be this: "Did you immediately turn to prescription medicines at the start of your seizures or after other things failed?

Thank you all again!
 
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Hey Monkeyboy,
I'm 32 male, on 2 AED meds, stopped drinking, watch what I eat, havent tried any of the "special diets" watch my stress levels best I can and thanks to everyone here (you know who you are!) I've found a new family who helps me deal with my seizures in a way i cant with everyone else, I'm a private person, yes I'm married with kids has stress in my life will be dealing with a lot of special stress for the next 12 years so I had to go for meds to help control my seizures and I also have PNES, which cannot be controled by meds, so those I have to just deal with on a daily basis as well.

I was in denial for the longest time that I had any kind of seizures but after going back through my medical paperwork after finally remembering I had it I read about my accident from 17 years ago and it stated had seizure actitivity for 5 min and they never treated me for it, and my new neuro, is taking that into account for why my seizures are getting more frequent even though I'm currently taking 2 different meds daily, so to your relative (I have one to) there is nothing wrong with trying the non med route 1st and if that doesnt help then going the med route, nut I chose to go with the meds because I also suffer from a lot of other issues that if I didnt would cause me more pain on a daily basis.
any questions you can send me a PM.
Mike
 
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also I must add you'll find that CWE has alot of caring people that will answer and give you information to the best of their ability, they have helped me so many times I cannot even count, thats why I call CWE my home away from home.

So here's my shout out to BERNARD
THANK YOU!
 

MonkeyBoy

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Thanks Julie Wishes.... I have already read through Rebecca's Story and it is indeed a great help. The way her mother has cataloged her journey is incredible.

Is there any more of you out there that are going it purely natural and having good results? Have you found the critical elements that work or to use as a starting point?

Like I said earlier - my relative is on a ketogenic diet with no artificial substances or additives at all. He is careful to not consume anything not organic or natural. He is getting 7-8 hours of uninterrupted sleep each night through the use of Melatonin (3mg) 30 minutes or so before he goes to bed. This is keeping him asleep for those 7-8 hours which seems to one of the biggest helps.

He is not playing any computer type games - something he use to do all the time. This was a struggle at first for him until he found that he could just sit and meditate and/or listen to soft music. Another big help he thinks.

As as far as supplements go? He is taking the following: Vitamin B Complex 2 x a day, Vitamin B6 2 x a day, Folate 250 mg 2 x a day, Vitamin E 400 IU 2 x a day, Krill Oil 1,000 mg 2 x a day, Magnesium Malate 500 mg 4 x a day, Magnesium L-Threonate 2,000 mg 3 x a day, Zinc 25 mg 2 x a day, and Taurine 400 mg 4 x a day. He used to take a high dose of calcium but learned that it was probably hurting him and that his blood serum levels were showing more than enough anyway (calcium is a constrictor and magnesium keeps it where it is supposed to be - in the bones mainly). He also used to take a high dose of Vitamin D3 (6-10,000 IU a day) but through testing and reading discovered that he was super high on his Vitamin D 25 levels and that he just did not need it either - he tries to sit in the sun for 20-30 minutes minimum each day if not longer. Note: He is very picky about the sources of his supplements and only buys the ones that are pure and not filled with manmade junk and artificial additives. He learned that trying to buy the cheapest at the large retail outlets or on-line stores does not always offer the chance to buy the best ones. He also learned from somewhere to soak in warm tubs several times a week in the late evenings with 2 cups of epsom salts (magnesium sulfate) and 1 cup of baking soda (sodium bicarbonate) to relax and to help him detox while also absorbing some magnesium into his body.

I think now that he has done these things for a little while with some initial good results overall and because of his competitive spirit he wants to add or modify his regimen to include some enhancers such as Piracetam and Choline as an example but wants to know more about it form people who are using it with no prescription medicines. He and I both have found blogs where people talk about it and it all sounds promising.

Thank you again and my thoughts and prayers are with you all that are suffering with seizures also. I never knew the magnitude of the problem until he started having them and I became involved. My only word or thought is - Wow! There was no way that I was prepared for the numbers of people experiencing them. I also was not prepared for the amount of prescription medicines some people are taking to try and control their seizures or brain surgeries. I had no idea! It also seems as though the medical community does not really know but treats a lot of the times through trial and error. My relative is trying to not go down this path if possible and to share his journey of experiences in hopes of helping others. I know that I too am forever changed and connected to this.....
 
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Ruth

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Thank you all for the fast replies to my plea for help. I looked at the link Silat before. I noticed one thing on there in addition to what my relative has adopted already (ketogenic diet, 7-8 hours sleep, no alcohol) and that is Piracetam. I had read about it in other places and was wondering if those that are on no meds have tried it and if so what results? Who here is using just natural supplements and personal actions to slow or stop their seizures?

It almost makes the situation for my relative seem hopeless to try to control his seizures with natural methods. If I could ask a single question to those of you on medications at this point it would probably be this: "Did you immediately turn to prescription medicines at the start of your seizures or after other things failed?
Hi, Welcome to CWE. The forum was made by Bernard, out of love for his wife Stacy. That love permeates throughout the whole forum.

There are many diets for epilepsy. I am on the glycemic Index diet. I did try the ketogenic diet many years ago. It did not work for me. If it is helping your relative, then by all means continue it. If it is not working, then try another diet until you find one for your friend.

I was first diagnosed when I was 6 years old. That was in 1949. No one knew anything about diets back then. I was put on medications. When I was 20 years old, my seizures increased with intensity. I almost died 3 times with epilepsy.

Meds tire me out.

One thing that works for me is doing exercise for about an hour a day. It keeps my mind from being on my epilepsy.

I would have tried means rather than meds if I had known about it back then. Now, I am on multiple meds. I am on the glycemic diet and that hellps me a great deal. I would love to try NeuroFeedBack if I had the money. My insurance will not cover it. You said that your relative likes music, there is also Music NeuroFeedBack. NFB retrains the brain. For music, have you been to Speber's Autodorium? There is great music there.

I am glad that you are a good friend to your relative. Have you shared what you have learned with your relative?
 
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MonkeyBoy

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Ruth - Thank you for your personal story and what you are learning. I share everyday with him. He is committed to staying off the computer these days as much as possible. I told him I will be his researcher.... :) point and click me... :)
 

Ruth

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There are computers that have glare free screens. I have one, it is a laptop.

I cannot drive, listen to loud music, bright lights that flash off and on, or listen to today's loud music. The music is deafening anyway. I am also cutting back on my TV wathcing. I do better without the TV or the internet. I like to read and have quiet. Going out with friends is a good idea.

You are in a great support group. This is a great one!! Ask all of the questions you want too. That is how we learn.
 
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MonkeyBoy

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Magnesium Deficiency

One thing that we have learned is that being magnesium deficient is not good for him and his seizure threshold level. The aggressive magnesium supplementation through a variety of means is designed to add back the maximum amount of magnesium possible to his body and brain. During some of our research we also discovered that anti-seizure medications along with many other medications severely deplete the body of magnesium and allows calcium to reign supreme which is not good for keeping seizures at bay. We also found as outlined in the type and amount of supplements listed in a earlier post that all oral magnesium is not equal. Do not waste time or money with magnesium oxide or citrate. Use magnesium malate as your main oral supplement if you want to maximize uptake - this came from him visiting a biochemist and getting a lesson on how magnesium and other minerals work and which ones are the best to take.

Hope this helps someone out there and that more will share about how natural things are helping you to remain seizure free.
 

Bernard

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Hi MB, welcome to the forum. :hello:

Your relative is starting down a road that my wife traveled many years ago. You can read about her story and updates, but the short version is yes, she achieved the "holy grail" (100% control without meds) for a while (roughly 4 years IIRC), but had difficulties with her hormone system after pregnancy/childbirth and has not been able to recapture that holy grail since.
 

MonkeyBoy

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Thanks Bernard! You bring hope! The goal is to not use any meds unless all else fails and fails miserably!!! He has chiseled it in stone!!! Looking forward to the journey! I hope your wife finds it again. I assume it must be hormone connected with the pregnancy setting things off?
 

MonkeyBoy

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Many Thanks!

Just a quick thanks to those that are providing feedback! What a caring and understanding place to come to. Thank you! As we learn we will provide it back to the group. Take care all.

:wave:
 

MonkeyBoy

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A Thankful Heart

The experience has been nothing less than great so far here on CWE! Thanks to all who have commented back and to those showing support! Looking forward to the journey ahead as we all learn......
 

avandever

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My daughter has Benign Epilepsy of Childhood with Central-Temporal Spikes OR Benign Rolandic epilepsy. The neurologist told me this is the best kind of epilepsy to have because patients usually grow out of it after puberty. BUT, it is usually more common in males, don't usually have daytime seizures and don't usually need AED's because they are so infrequent. She is (female) in the group that has seizures during the day as well as at night and was having them very often before AED administration. Her brothers are highly intelligent, and she is struggling to get B's and pass state testing. I hate seeing her go through this aspect not to mention the side effects AED's have on 10 yr old bodies. I am trying to adjust her diet as much as possible. Caffeine and soda was the first to go. I too believe that proper nutrition and exercise should be explored. We followed the neurologists advise and put her on Keppra then Trileptal after the Keppra started making her act out to the extreme. The neurologist talked me out of a ketogenic diet but did suggest no caffeine, preservatives or red dyes and an increase in fish. I took it a step further and eliminated all dyes and MSG and put her on all organic foods. We have enjoyed cooking together. We have learned to make ranch dressing (her favorite). I'm working on a Chic-fil-a "type" recipe (another favorite BUT IS FULL OF MSG---PARENTS BEWARE!!!!!!). I am more cautious about pulling her off of AED's because of her age/development. After 3 months of this type of lifestyle her EEG showed seizure activity. It was very disappointing for her but we are going to continue with are new lifestyle changes. The entire family is eating this way now. Keep us posted on your friend's health
 

MonkeyBoy

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If I could add anything to what we learned thus far is to get proper testing early - by this I mean ionized electrolyte serum testing to understand what your actual minerals really are and not by standard modern blood tests that do not work. Once you know the real levels then you can attack those deficient areas your self and see incredible results in a very short time. I am willing to bet that magnesium will be one of the deficient ones and calcium will be one of the ultra high ones. Do not take no for an answer even if you have to travel to get the right testing and pay for it out of pocket. Do not let your insurance company dictate your treatment!
 
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