The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Ecstatic Seizures

Thu, 08/27/2009 - 07:32

 Hi

Has anyone experienced "ecstatic" seizures?  I've had a series of them recently, and they are amazing: totally outside the range of normal experience and by far the best experiences of my life!  I'm not religious or "spiritual" but recognise that they could be construed by others as deep and meaningful life changing events...evidence of the "divine" as opposed to neurological events. 

I've been told by my neurologist they are very rare and I've not been able to find out much about them/share experiences. 

Victoria

Hello all,  I'm adding this comment just over a month after the original post having realised that the thread is now incredibly confusing and there are some misunderstandings following what seem to be random postings.   You may want to follow the date order of the posts before making comments or coming to conclusions.   

Regards,

Victoria

Comments

Re: Ecstatic Seizures

Submitted by victoria.w on Mon, 2009-09-07 - 12:54

Hi Johnny,  I'm really sorry you're having a bad time and you are right - it is good to find out that you're not alone with these "crazy" experiences.  I'm probably not the best person to respond to your question but my thoughts for what they're worth....

It's difficult living with a condition that brings into sharp focus the tenuous nature of our existence, and one that can threaten our identity/sense of self.  Your family are almost certainly worried about you and are seeking easy explanations/solutions.  My understanding is that all drugs, pharmaceutical or not, have potential side-effects and finding what works or makes life bearable for the individual can be difficult.  If your doctor is Ok with it and says he would prescribe the drug if it were legal in your state, I assume his acceptance is based on scientific evidence and professional experience.  Finally, if it's available, seek help to address the anger, agitation, depression.  It's hard to admit we're vulnerable and acknowledge the anguish, fear and confusion that come with the condition.  (It's taken me years!)   On the other hand, if you think you're experiencing  side-effects from your medication then talk to your doctor again as he may be able to change the regime to reduce your side-effects.  

 

Hi Johnny,  I'm really sorry you're having a bad time and you are right - it is good to find out that you're not alone with these "crazy" experiences.  I'm probably not the best person to respond to your question but my thoughts for what they're worth....

It's difficult living with a condition that brings into sharp focus the tenuous nature of our existence, and one that can threaten our identity/sense of self.  Your family are almost certainly worried about you and are seeking easy explanations/solutions.  My understanding is that all drugs, pharmaceutical or not, have potential side-effects and finding what works or makes life bearable for the individual can be difficult.  If your doctor is Ok with it and says he would prescribe the drug if it were legal in your state, I assume his acceptance is based on scientific evidence and professional experience.  Finally, if it's available, seek help to address the anger, agitation, depression.  It's hard to admit we're vulnerable and acknowledge the anguish, fear and confusion that come with the condition.  (It's taken me years!)   On the other hand, if you think you're experiencing  side-effects from your medication then talk to your doctor again as he may be able to change the regime to reduce your side-effects.  

 

Re: Ecstatic Seizures

Submitted by zealot on Tue, 2009-09-08 - 06:21
I've never joined one of these talk-back things before, but I feel compelled to join this one. I have had seizures and migraines since I was a child, but have never been diagnosed. I know from my own research that I have temporal lobe epilepsy and when I get really lucky, I get secondary limbic system involvement resulting in full TC seizures with a post ictal phase that lasts a week. This is truly the agony and the ecstasy! Have a seizure and find religion. Who would a' thunk it. I have truly found G-d. I convinced a room full of psychiatrists that G-d was in the room and that I was talking to him and that I was neither psychotic nor grandiose. I was dying and had a near death experience that is the best thing I has ever happened to me in my life. I speak to Him often and he came to me and touched me and gave me life. Yes I was seizing. The down side of this is that I've had so much temporal lobe damage that I had to teach myself how to write again. I can't compensate very well for my dyslexia anymore. The list goes on. I also get the nightmarish seizures. I told a Dr. That the aura was like migraine, only more disgusting. I take 1800mg of Trileptal a day (I am a 100lb female) and it still isn't enough. I have out of control asthma and my choice is use my inhaler now and seize later or don't breathe now and forget about later. Back to the ecstasy. The human brain is hard wired for religion. Call it spirituality if you prefer. I refuse to believe that my experiences are merely a result of morphological changes in my brain due to the seizures or signals run amok. Every time a neuron fires there is a change in our brains. These signals can result in changes in gene expression that permanently alter our brains. what makes us sentient human beings is our minds, not our brains, and the relationship between the two is not understood. Every human experience can be said to be an artifact of our brains. Is that really what we want to reduce ourselves to? May we all find peace of mind in our hyperactive brains Zealot.

Re: Ecstatic Seizures

Submitted by johnny on Tue, 2009-09-08 - 15:32

 Thanks Victoria ,for answering back and everyone that was apart of this discussion so far. I know I kind of got off the topic a little with my family issues(medical marijuana). That is a whole other topic that has been discussed before by alot of people already here in the forum. The best way I describe each of us is that we are like fingerprints or snowflakes, similar in some ways ,but no case is the same as the other. Especially when it comes to the seizures,some much of what you experience with each one is alot different than last (that I can remember anyways). 

 Zealot ,another person who I can use the term loosley , has been BLESSED ! I know that is to strongly put. While I have experienced these types of seizures tossed in the mix with other episodes too, it just seems that having these ecstatic seizures have been a mind blower ! Strangely as it may sound , I kind of enjoyed them in a sense ? Well mostly because I was having a real rough time with my meds ,and I don't want that to sound like an excuse,because they can give some depressing side effects, I find it odd that we both have the same dose of Trileptal 1800 mgs /day. I also take 4000 mgs of Keppra , just so you know. You also weigh only 100 lbs. , but I worry about you having those nightmarish seizures. I'm a patient at the the Cleveland Clinic ,which has an excellent team of doctors and nurses ,one of the best hospitals in the world. I remember having these nightmare seizures and my neurologist did not like me having those seizures. They were happening during my sleep around 5-7:00am and he increased my trileptal and introduced me to Klonopin. The Klonopin is kind of like ativant with a sleeping agent in it, its a .5mg pill that I take at bedtime. But don't be frusrated about the meds if they want to adjust the doses. Its for the better probably that you dont have the seizures,if I'm correct. 

  I find myself replying more to the forum lately, than ever ,which is not that much. This sight altogether has benefitted me in so many ways , just by reading current events , blogs, stories and gathering info for my having epilepsy. Meaning more than anything to me right now is finding people to talk to and understand where you coming from. My Phsyciatrist and my Neurologist want some of my family to come my next appt. and teach and talk about my disorder. Discuss everything from what its like to try bring them down to my level when it comes to meds and there side effects , seizures and there side effects and just alot of the stressful life and times that we have. I wish everyone the best and pray that complicated things can be avoided and may we stay healthy. 

Johnny   

 Thanks Victoria ,for answering back and everyone that was apart of this discussion so far. I know I kind of got off the topic a little with my family issues(medical marijuana). That is a whole other topic that has been discussed before by alot of people already here in the forum. The best way I describe each of us is that we are like fingerprints or snowflakes, similar in some ways ,but no case is the same as the other. Especially when it comes to the seizures,some much of what you experience with each one is alot different than last (that I can remember anyways). 

 Zealot ,another person who I can use the term loosley , has been BLESSED ! I know that is to strongly put. While I have experienced these types of seizures tossed in the mix with other episodes too, it just seems that having these ecstatic seizures have been a mind blower ! Strangely as it may sound , I kind of enjoyed them in a sense ? Well mostly because I was having a real rough time with my meds ,and I don't want that to sound like an excuse,because they can give some depressing side effects, I find it odd that we both have the same dose of Trileptal 1800 mgs /day. I also take 4000 mgs of Keppra , just so you know. You also weigh only 100 lbs. , but I worry about you having those nightmarish seizures. I'm a patient at the the Cleveland Clinic ,which has an excellent team of doctors and nurses ,one of the best hospitals in the world. I remember having these nightmare seizures and my neurologist did not like me having those seizures. They were happening during my sleep around 5-7:00am and he increased my trileptal and introduced me to Klonopin. The Klonopin is kind of like ativant with a sleeping agent in it, its a .5mg pill that I take at bedtime. But don't be frusrated about the meds if they want to adjust the doses. Its for the better probably that you dont have the seizures,if I'm correct. 

  I find myself replying more to the forum lately, than ever ,which is not that much. This sight altogether has benefitted me in so many ways , just by reading current events , blogs, stories and gathering info for my having epilepsy. Meaning more than anything to me right now is finding people to talk to and understand where you coming from. My Phsyciatrist and my Neurologist want some of my family to come my next appt. and teach and talk about my disorder. Discuss everything from what its like to try bring them down to my level when it comes to meds and there side effects , seizures and there side effects and just alot of the stressful life and times that we have. I wish everyone the best and pray that complicated things can be avoided and may we stay healthy. 

Johnny   

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.