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Controlling seizures without medication

Wed, 04/22/2009 - 13:27

I hope that this does not turn out to be a controversial subject. 

Let me just start by saying that I don't know what kind of seizure disorder I have.  I have had only 3 EEGs between the time I was 19 and now 35.

After the first EEG, my doctor told me I had epilepsy and put me on Tegretol.  I took the medication only for a year, and then moved over to Klonopin, which I have taken ever since.  When I was 22, I had another EEG, and the doctor told me I was fine. I was living overseas at the time of my 2nd EEG and I really can't vouch for the expertise of the doctor.

Despite what the doctor told me of my EEG, my seizures continued and had never stopped.

The seizures I was having were incredibly breif lasting only a second or two.  My eyes would roll back into my head, I would NOT fall to the ground.  I'd lose muscle control from the neck and above, and kind of twitch my head back and forth with very small jerks that were almost unnoticeable.

In any event, I was sick with the flu recently, and during my doctor's visit, I had one of these seizures, and he insisted I see a nuerologist again.

I had an EEG and MRI, and I've been told again that I have a seizure disorder.  I just started taking Lamictal.

I'm very keen to how my body responds to foods, stress, and specific situations.  

If I were able to simply avoid all the situations that trigger my seizures which in most cases are stress-induced,  I believe that I could live seizure-free without medication.

But that is not possible.  What IS possible - is for me to overcome the situations that trigger my seizures with a different mental outlook. Although I have not been able to successfully change my mental approach to the situations that cause my seizures all the time,  I have had success in many instances. 

To sum it up, I strongly believe that it would be possible to take control of my seizure disorder through a non-medicated approach. Perhaps my seizures are just different.  I don't even know at this point what kind of seizures I have.  All I know is that both of my EEGs in the US showed with certainty that I have a seizure disorder. I have left a message with my doctor today, to get more information on his diagnosis, and will post it here when I receive that information (see below).

I will continue taking my Lamictal.  What I want to know is if anybody agrees that it could be possible to correct a form of seizures with a non-medicated mental approach; any doctors or patients?

I am not a scientologist.  In fact, I'm not even sure what their approach to a seizure disorder is.  I am just stating what I think I have the power to do, and want to find out if anybody shares those ideas.

 

Update

I spoke with my doctor today.  The seizures that I have been having are simple and complex focal seizures.  

Comments

Re: Controlling seizures without medication

Submitted by just_joe on Sun, 2013-07-28 - 19:10

Hi Greg

I understand where your comming from. I see doctors when I have a problem I can't deal with which I have been doing for many years. I have epilepsy and I hate taking medications for it. I know they are there to help control the electrical impulses hitting in the brain. I have had seizures for more than 50 years some of those were seizure free. You are right when talking about education and learning what medications can do. Any medication including asperin have side effects. What medications for seizures do is control electrical impulses the same medication can cause electrical impulses in others. A good diet helps but I love my steaks seafood and everything else that I have fixed. I would love to live where I could raise my own veggies but I don't I do go to farmers markets and try and buy fresh veggies that were grown near where I live. I bake my own bread which if not eaten in 3 days goes in the fridge because it does not have all the stuff in it so mold will hit it fast especially in a humid environment.  Some people need to look at old home remedies they would be surprised at what vinegar water an honey can do if it is taken  daily,  I have been able to do alot mentally. What most people do not know is that they only use a very small portion of their brain. Once I was put on meds for my epilepsy I steared away from taking anything else. SOme people need pain killers and I know that because my brothers and sister have had to use them. I have had knee surgery which can hurt bad. The first time I took 1 pain killer I gave the rest of the bottle to the doc. the second time I had it 30 years later I was given a filled RX when leaving the hospital which I took none of. My doctor was working on my hand which I had burned and he stated my blood presure was high and I was to see him in 3 days. I asked him what he wanted my blood presure to be. He said normal would be 120/80 I asked what mine was and it was higher than I wanted it. I told him I would have it down to normal and the next visit it was 120/80. He asked what I had done to get it down I told him the mind is a wonderful thing and people can use theirs to help them.

Doctors know a lot but people do not know that the doctor is part of a team. The patient is the other part of the team. People need to note their seizures and if they think something triggered the seizure note the trigger. the length of time in the seizure should be noted and the time it takes to get back to normal. Giving the doctor that information gives the doctor more information to work with. He has knowledge of medications and procedures that can help many but each persons seizures are different as are the triggers and medications. The more information he has the better he can serve us.

Hi Greg

I understand where your comming from. I see doctors when I have a problem I can't deal with which I have been doing for many years. I have epilepsy and I hate taking medications for it. I know they are there to help control the electrical impulses hitting in the brain. I have had seizures for more than 50 years some of those were seizure free. You are right when talking about education and learning what medications can do. Any medication including asperin have side effects. What medications for seizures do is control electrical impulses the same medication can cause electrical impulses in others. A good diet helps but I love my steaks seafood and everything else that I have fixed. I would love to live where I could raise my own veggies but I don't I do go to farmers markets and try and buy fresh veggies that were grown near where I live. I bake my own bread which if not eaten in 3 days goes in the fridge because it does not have all the stuff in it so mold will hit it fast especially in a humid environment.  Some people need to look at old home remedies they would be surprised at what vinegar water an honey can do if it is taken  daily,  I have been able to do alot mentally. What most people do not know is that they only use a very small portion of their brain. Once I was put on meds for my epilepsy I steared away from taking anything else. SOme people need pain killers and I know that because my brothers and sister have had to use them. I have had knee surgery which can hurt bad. The first time I took 1 pain killer I gave the rest of the bottle to the doc. the second time I had it 30 years later I was given a filled RX when leaving the hospital which I took none of. My doctor was working on my hand which I had burned and he stated my blood presure was high and I was to see him in 3 days. I asked him what he wanted my blood presure to be. He said normal would be 120/80 I asked what mine was and it was higher than I wanted it. I told him I would have it down to normal and the next visit it was 120/80. He asked what I had done to get it down I told him the mind is a wonderful thing and people can use theirs to help them.

Doctors know a lot but people do not know that the doctor is part of a team. The patient is the other part of the team. People need to note their seizures and if they think something triggered the seizure note the trigger. the length of time in the seizure should be noted and the time it takes to get back to normal. Giving the doctor that information gives the doctor more information to work with. He has knowledge of medications and procedures that can help many but each persons seizures are different as are the triggers and medications. The more information he has the better he can serve us.

Re: Controlling seizures without medication

Submitted by randres on Wed, 2012-04-11 - 11:08

Hello everyone - i have read the comments in an effort to understand your experiences.  I am a researcher for a living so I research EVERYTHING...habit.  I have had epilepsy since I was around 12 - the onset of puberty.  At the time I was diagnosed with absence seizures and once they stopped over-medicating me I was completely controlled and not perpetually sleeping.  I have been fortunate in that I lived a seizure free life until I hit 40 (no side-effects, nothing) - I am on Frisium (clobazam).  Then, after a year of begging my neurologist to do something (as I was having absence seizures one day a month - during my cycle) ...wham!  Full on tonic clonic (grand mal) seizures - hospitalization and medication jacked up as high as they could.  I quickly put a stop to the Epival as I gained a ridiculous amount of weight on it and so they just upped my existing Frisium.

A couple things I have learned since then.  EVERYONE has a seizure threshold.  Literally, everyone on the planet could have a seizure given the right conditions in your brain.  Second, the threshold is controlled by hormones.  The higher your progesterone, the greater your tolerance.  For men and women.  For women, when they start with "the change" many undergo spikes of estrogen and low levels of progesterone = seizure.

The progesterone always needs to be kept elevated or at normal levels.  I am right now on the pill (which is of course bad for me but my OB/GYN agreed to as long as I'm not a smoker and my neurologist totally disregards its value "you can take it if you want to but it won't do anything".  In fact, I tested  out his theory and within a week off of the pill, I could feel the absence seizures returning (however brief).  Since my absence seizures are now the precursor to a grand mal seizure, I immediately get to a safe place even if nothing happens.

I am currently investigating the possibility of controlling my seizures with a far lower dose of the Frisium (30mg instead of 50mg, no birth control pill but using natural progesterone and bio-identical hormones as a substitute.  I have eaten healthy my whole life so tend not to focus on diet.

 I will keep you posted.   For me - hormones are directly related to how severe (or not) my seizures get.

Here's a tip for you - the next time a dr. prescribes something for you, ask him or her if they know why it works.  Then, go ask a pharmacist.  I have yet to find a neurologist that understands why or how any of the drugs they are prescribing work...save one.  Dr. Blume.  I haven't found a good neurologist since he retired.

 

 

Hello everyone - i have read the comments in an effort to understand your experiences.  I am a researcher for a living so I research EVERYTHING...habit.  I have had epilepsy since I was around 12 - the onset of puberty.  At the time I was diagnosed with absence seizures and once they stopped over-medicating me I was completely controlled and not perpetually sleeping.  I have been fortunate in that I lived a seizure free life until I hit 40 (no side-effects, nothing) - I am on Frisium (clobazam).  Then, after a year of begging my neurologist to do something (as I was having absence seizures one day a month - during my cycle) ...wham!  Full on tonic clonic (grand mal) seizures - hospitalization and medication jacked up as high as they could.  I quickly put a stop to the Epival as I gained a ridiculous amount of weight on it and so they just upped my existing Frisium.

A couple things I have learned since then.  EVERYONE has a seizure threshold.  Literally, everyone on the planet could have a seizure given the right conditions in your brain.  Second, the threshold is controlled by hormones.  The higher your progesterone, the greater your tolerance.  For men and women.  For women, when they start with "the change" many undergo spikes of estrogen and low levels of progesterone = seizure.

The progesterone always needs to be kept elevated or at normal levels.  I am right now on the pill (which is of course bad for me but my OB/GYN agreed to as long as I'm not a smoker and my neurologist totally disregards its value "you can take it if you want to but it won't do anything".  In fact, I tested  out his theory and within a week off of the pill, I could feel the absence seizures returning (however brief).  Since my absence seizures are now the precursor to a grand mal seizure, I immediately get to a safe place even if nothing happens.

I am currently investigating the possibility of controlling my seizures with a far lower dose of the Frisium (30mg instead of 50mg, no birth control pill but using natural progesterone and bio-identical hormones as a substitute.  I have eaten healthy my whole life so tend not to focus on diet.

 I will keep you posted.   For me - hormones are directly related to how severe (or not) my seizures get.

Here's a tip for you - the next time a dr. prescribes something for you, ask him or her if they know why it works.  Then, go ask a pharmacist.  I have yet to find a neurologist that understands why or how any of the drugs they are prescribing work...save one.  Dr. Blume.  I haven't found a good neurologist since he retired.

 

 

Re: Controlling seizures without medication

Submitted by llanarth on Sun, 2013-06-09 - 09:01

Hello,

I am in a situation. I also found out that progesterone controlled my seizures when I gave up drugs when I was pregnant. I, too am embarking on a journey, and I would be very interested to hear from you.

 

I have waking epilepsy, and I think similar epilepsy to you. I have the progesterone coil, unfortunately after a time I feel it starts to be less effective. I don't take drugs, but ocassionally I do have the odd fit, when my progesterone level drops off.

I have just done some research into neurofeedback particularly something called LENS. Recent research is very promising and there is hope of more devices coming onto the market, especially a device which stimulates the trigennimal nerve (don't think I've spelt that correctly) whilst your asleep. It has yet to come onto the market though-LENS treatment is quite expensive but I'm wililing to give it go and it has a good statistical rate of helping people. I will write on this forum about my experiences. I am interested. Where do you get natural progesterone from? Also the hydro-electric water, could someone give me information on that please? I originally was on epilim, which basically make me into a zombie, however, I wish to get better control over my fits (waking and progesterone related too). I would be very interested to hear form anyone participating on this forum, and I will also write about my experiences too.

Thanks

Hello,

I am in a situation. I also found out that progesterone controlled my seizures when I gave up drugs when I was pregnant. I, too am embarking on a journey, and I would be very interested to hear from you.

 

I have waking epilepsy, and I think similar epilepsy to you. I have the progesterone coil, unfortunately after a time I feel it starts to be less effective. I don't take drugs, but ocassionally I do have the odd fit, when my progesterone level drops off.

I have just done some research into neurofeedback particularly something called LENS. Recent research is very promising and there is hope of more devices coming onto the market, especially a device which stimulates the trigennimal nerve (don't think I've spelt that correctly) whilst your asleep. It has yet to come onto the market though-LENS treatment is quite expensive but I'm wililing to give it go and it has a good statistical rate of helping people. I will write on this forum about my experiences. I am interested. Where do you get natural progesterone from? Also the hydro-electric water, could someone give me information on that please? I originally was on epilim, which basically make me into a zombie, however, I wish to get better control over my fits (waking and progesterone related too). I would be very interested to hear form anyone participating on this forum, and I will also write about my experiences too.

Thanks

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