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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 creativerachel on Wed, 2009-04-22 - 23:22

I guess I am really not one to give any advice on this subject, but I will just share how it's been working for me..

 

I am a 24 year old female, and I was diagnosed with epilepsy when I was in grade 7. It's been a long time since I have seen a neurologist- I guess it just frightens me. Anyway, I seem to have 2 types, I have petit mal seizures(day dreaming spells) and tonic clonic(grand mal) seizures. My mother, also did have epilepsy. She took me for my first EEG after about 2 years of noticing these odd day dreaming spells that I would constantly have, I had the EEG and was informed that I did indeed, have epilepsy. Never ONCE did I have a tonic clonic seizure until AFTER I was diagnosed and put on Epival. It sucked, to put it frankly..I was taking 6 horse pills a day, at the same time, and I just truely felt like I hated my life(I was in grade 7). I went into a huge depression where all I would do, was sleep. I continued to have tonic clonic seizures every now and then- I also don't think I was that great with taking my meds..

To make a long story short, when I reached high school, I made the decision to stop taking my medication. I just..simply stopped, because I knew that my mother had just stopped..out of the blue, and is now seizure free.

After comin off of my medication, I had quite a few tonic clonic seizures. I was having approximately 8 a year, which to some- that is not alot at all, and I am thankful that my case is not nearly as bad as it could be. But yes, I was having 8 a year and now I am down to 2 a year. I am just a normal person my age, i dont do drugs but I have the occasional drink, I dont eat overly healthy, I do have minimal exercise, I have horrible sleep patterns and a desk job. I have come to know my warning signs, which has enabled myself and my friends and family to make sure I am out of harms way to the best of their ability. I also find that keeping myself focused, and alert helps alot as well. And also going to sleep if I do feel one coming on.

What I did, probably wasn't for the best, as I did not seek any sort of advice from my neurologist about going off of my meds. In all honesty, I was spoiled little teenage brat who wanted things done her way, and I just said "well my mom did it, and shes been seizure free for how many years now?!". I am thankful, that I don't have an overly strong case and that going off of my medication has worked for me, I am not seizure free yet, in fact I just had a tonic clonic seizure on Saturday. I am doing a lot better than I was, but that is how it worked for me. I Know most of you are older than me, but if you are considering going off of your medication, talk to your doctor and make sure everyone around you knows that you are coming off of it. I was selfish, and scared alot of people by coming off.

Good luck

I guess I am really not one to give any advice on this subject, but I will just share how it's been working for me..

 

I am a 24 year old female, and I was diagnosed with epilepsy when I was in grade 7. It's been a long time since I have seen a neurologist- I guess it just frightens me. Anyway, I seem to have 2 types, I have petit mal seizures(day dreaming spells) and tonic clonic(grand mal) seizures. My mother, also did have epilepsy. She took me for my first EEG after about 2 years of noticing these odd day dreaming spells that I would constantly have, I had the EEG and was informed that I did indeed, have epilepsy. Never ONCE did I have a tonic clonic seizure until AFTER I was diagnosed and put on Epival. It sucked, to put it frankly..I was taking 6 horse pills a day, at the same time, and I just truely felt like I hated my life(I was in grade 7). I went into a huge depression where all I would do, was sleep. I continued to have tonic clonic seizures every now and then- I also don't think I was that great with taking my meds..

To make a long story short, when I reached high school, I made the decision to stop taking my medication. I just..simply stopped, because I knew that my mother had just stopped..out of the blue, and is now seizure free.

After comin off of my medication, I had quite a few tonic clonic seizures. I was having approximately 8 a year, which to some- that is not alot at all, and I am thankful that my case is not nearly as bad as it could be. But yes, I was having 8 a year and now I am down to 2 a year. I am just a normal person my age, i dont do drugs but I have the occasional drink, I dont eat overly healthy, I do have minimal exercise, I have horrible sleep patterns and a desk job. I have come to know my warning signs, which has enabled myself and my friends and family to make sure I am out of harms way to the best of their ability. I also find that keeping myself focused, and alert helps alot as well. And also going to sleep if I do feel one coming on.

What I did, probably wasn't for the best, as I did not seek any sort of advice from my neurologist about going off of my meds. In all honesty, I was spoiled little teenage brat who wanted things done her way, and I just said "well my mom did it, and shes been seizure free for how many years now?!". I am thankful, that I don't have an overly strong case and that going off of my medication has worked for me, I am not seizure free yet, in fact I just had a tonic clonic seizure on Saturday. I am doing a lot better than I was, but that is how it worked for me. I Know most of you are older than me, but if you are considering going off of your medication, talk to your doctor and make sure everyone around you knows that you are coming off of it. I was selfish, and scared alot of people by coming off.

Good luck

Re: Controlling seizures without medication

Submitted by 3Hours2Live on Wed, 2009-04-22 - 23:33
If you call Dr. Atkin's Diet a non-medicated mental approach, it might work. It reduces, and sometines stop, seizures in adults; it is very difficult and expensive to follow though. I commented on it at www.epilepsy.com/discussion/982715 Officially, it's usually limited to kids. I've also applied Skinnerian Behaviourism techniques to myself in developing schedules of reinforcement to preclude or minimize expanding partial TLE seizures that would disrupt my speech; this worked very well for technical and formal situations during periods of higher thresholds, with using Pavlovian conditioning as the TLE visceral sensation "switch." Old technical textbooks on Behaviourism from the late 50's to mid 60's seem the best to me, as the good ones avoid the Freudian and Cognitive Theory muck. Useful and carefull textbooks don't make the mistake of confusing "punishment" with "negative reinforcement." The effectiveness of the techniques probably depend on which area of the brain the seizures originate from; one of the most frequent areas is the primitive Limbic System involved with TLE. A short and popular book on behaviorism was B. F. Skinner's "Beyond Freedom and Dignity" (1971). I also tried variations with sensory stimulation to stop secondary tonic-clonics from strong periodic clusters of seizures. Some reports of success from others with stimulation involve very counter-intuitive results, esp. a 1989 article in Epilepsia, 30(2):168-174 "Sensory Stimulation for Inhibition of Epileptic Seizures": http://www3.interscience.wiley.com/cgi-bin/fulltext/119430454/PDFSTART I hope this helps.

Re: Controlling seizures without medication

Submitted by DougInSanDiego on Thu, 2009-04-23 - 04:15

After having my first gran mal seizure at age 33, I was immediately put on Tegretol (after finding I was allergic to Dylantin).  After taking this for a year, I asked the neurologist if I could stop and he said it was "too early".  I took this for code that he was not going to take the rap for letting me go off of the drugs and then getting in a car accident or something - so I did it myself.  I reduced the prescription slowly.  It took over a month to go completely drug free.

I was drug free for 13 years - then I had another seizure at home - and another at work about a month later.  I'd love to be drug free again, but I love being able to drive a lot more!  So, I'm back to the drugs (now Carbitrol) and have been seizure free for over 7 years.  I still have brief episodes/auras but they only last 5-10 seconds.  That is enough to scare me into staying on the drug therapy.

The only encouragement I might be able to give you is that I was under a lot of job related stress AND had sleep apnea when the seizures re-appeared.  Maybe if I had taken it easy and had gotten a CPAP machine earlier, the seizures might not have ever reappeared...   I'll never know.

Doug

 

After having my first gran mal seizure at age 33, I was immediately put on Tegretol (after finding I was allergic to Dylantin).  After taking this for a year, I asked the neurologist if I could stop and he said it was "too early".  I took this for code that he was not going to take the rap for letting me go off of the drugs and then getting in a car accident or something - so I did it myself.  I reduced the prescription slowly.  It took over a month to go completely drug free.

I was drug free for 13 years - then I had another seizure at home - and another at work about a month later.  I'd love to be drug free again, but I love being able to drive a lot more!  So, I'm back to the drugs (now Carbitrol) and have been seizure free for over 7 years.  I still have brief episodes/auras but they only last 5-10 seconds.  That is enough to scare me into staying on the drug therapy.

The only encouragement I might be able to give you is that I was under a lot of job related stress AND had sleep apnea when the seizures re-appeared.  Maybe if I had taken it easy and had gotten a CPAP machine earlier, the seizures might not have ever reappeared...   I'll never know.

Doug

 

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