Causes, Symptoms, and Treatment for Ecstatic Epilepsy

Join our founder Natalie Boehm as she talks about Ecstatic Epilepsy in our Understanding Epilepsy Series! Ecstatic Epilepsy is a rare form of focal seizures that occur without the impairment of a person's awareness or consciousness. Feelings of intense positive emotions are common when having an ecstatic seizure.
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[@mpxggg]

I asked about seizures, feeling nice in an epilepsy group online, and a lot of people got mad at me. Glad I found this and I’m not the only one.

[@DefeatingEpilepsyFoundation]

I am glad you found our channel as well. Please feel free to ask any questions you have. This is a space where we do not judge. We want people to learn and be able to get the information they need.

[@lucyvanpelt710]

Omg. I thought I was having a mid life crisis or a spiritual awakening. This describes everything I’ve been experiencing 100%. What do I need to do now? Call my doctor? She’s going to think I’m crazy. I’ve researched everything about astrology and universe energy and I just couldn’t explain it.

[@DefeatingEpilepsyFoundation]

Call your primary care physician and ask for a referral to a neurologist, specifically an epileptologist if one is available in your network. That way the specialist can order the tests needed for a diagnosis. Most likely, they will start with an EEG, known as an electroencephalogram. An EEG measures brain waves and can pick up abnormal activity. If any seizures are taking place, they will be able to create a care plan. There are videos on different tests they do to diagnose epilepsy as well as different treatments on our channel. I'm happy to help if you need to find anything specific or just have questions.

[@researcherhaht]

thanks , great work.

[@DefeatingEpilepsyFoundation]

Thank you!

[@bobidderis3880]

Thank You so much. Now I can send this video to my doctor. Its hard to describe my epileptic episode to them 😭. When I said I have epilepsy and seizure my doctor laughed at me. He said nobody can remember their seizure. But I can! I said I feel super happy before seizure then I got it. During complex partial I still can hear and think but foggy. But during the evolvement to secondary GTC. I just loss consciousness. So I got like three different kind of seizures! 3 in 1 package! Thanks agai for this video now I can show my doctor what I've been struggling with 🙏🏼😭😢

[@DefeatingEpilepsyFoundation]

You are welcome Bob. When my intern and I were researching this, it was the first time I read about someone feeling happy, a divine feeling before a seizure. Mine are the opposite, I become really frightened. I can imagine that it would be hard to describe. What was interesting about a study we found, there were a couple of patients who did not want to take their medication because the auras they had before the seizure, they were so happy and they wanted to experience the feeling. The medication made them depressed and they couldn't deal with it. Dr. Ian Bone who is on our advisory board did an interview about an journal article he wrote about epilepsy and religion. People like Joseph Smith and Joan of Arc they believed experienced ecstatic seizures in their temporal lobes because of having the divine feeling that they were connected to God. I encourage you to watch it, there's a lot of good information.

[@bobidderis3880]

@@DefeatingEpilepsyFoundation thanks I'll check it out surely! Coz I just had four relapsing episodes about four hours ago. And I went from total blissfulness to panic anxiety and then back to that blissfulness again and again. My chest were heavy like a big rock being put on it. I'm gasping for air! Ok let me start my story properly. I was sleeping normally like always. Then I went from deep sleep to this half awake state where a sudden divine feeling struck me. I feel super happy and peaceful like I don't have any worldly problems to think about anymore. I feel like I'm ready to rise to heaven and be at peace there. Then the feeling started to become more intense. My eyes still tightly shut. Then my arms and my legs stiffen. I can feel my head turned to my left. And I can feel that I'm lips smacking and my left hand picking at my shirt. Still my mind in blissful state. But when it went away my emotions went from blissfulness dropped down to super duper uber panic anxiety! This part was so so intense then I slipped into tonic clonic. Then it went black. I'm totally out! Few minutes later I woke up to realize that I wet my pillow with my drools. At this point I'm sure I had that tonic clonic episode. I feel exhausted and weak. All my muscles are buzzing and spasming out of control. Then that blissfulness came again. You know what I even said goodbyes to my mom and dad in my head. I believed that this is the time. And then the onset repeats itself again. I'm getting this epileptic episode because of my motorcycle accident in year 2020. I passed out for a day and received about eight pints of blood transfusions. Doctors believed that there was a whiplash type of injuries that causes my seizures. Other injuries I got in that crash was open book pelvic fracture with permanent pubis symphysis diastasis, left wrist fracture, hydropneumothorax that causes my right lung to collapse, c4 c5 c6 cervical stenosis that pinched against my spinal cord and L4 L5 S1 ruptured spinal disc also pinching my nerves. Last month's surgery was my number eight surgery (cervical stenosis). Along with these injuries I was also diagnosed with major depressive disorder and panic anxiety. Doctors only gave me Epilim because they didn't know what kind of seizure I have. I was scheduled to see a neurologist at the end of this month. Hopefully my EEG results came positive so I don't have to continuously wondering in the dark anymore. My MRI and CT returns normal. That's weird!

[@DefeatingEpilepsyFoundation]

@@bobidderis3880 I am so sorry you have been through so much. What a scary experience, and to have to go through all of this to do what you can to recover and adjust. I am not surprised that you were diagnosed with major depressive disorder and panic anxiety. I'm surprised they didn't diagnose you with PTSD after going through all of that. I have had tonic-clonic seizures and they are just as you explained and they take all of the energy out of you. I hope your EEG picked something up and that the neurologist can give you some answers. If you need any information, I am happy to do some research to help you learn more. I have heard about MRI's coming back normal despite someone having epilepsy. Same things with EEG's. In my life I have had some that were abnormal and some normal. The best thing to do right now is to keep a journal of everything that is happening, that will help the doctor a lot. If the EEG comes back normal and they cannot find a medication to control the seizures, I would ask to go to the Epilepsy Monitoring Unit. You would be there on average three to five days with the goal of them picking up some seizures on the EEG so they can get an idea of where they are coming from. There is a video on Epilepsy Centers on our channel and that can explain what it is like. I can also send you some information as well. I hope that the doctor can provide you with some answers and I hope things get better. You can email me at [e-mail] if you need anything.

[@bobidderis3880]

@@DefeatingEpilepsyFoundation I ran through this video again. And YES! I had that gelastic seizures as well. I remembered the first time I got warded for my seizure, doctors said I'm behaving weirdly. My speech was slurry and I kept laughing and giggling like there's something funny that tickles me. Thank you thank you thank you so much for this video 😭🙏🏼. This sums up all the symptoms that I had with my seizure. I don't know how many of this cases appeared in the States but here in my country I might be the rare gems. That's why five doctors that seen me before were puzzled as I can described clearly what's going on in preictal, ictal and postictal phases of my fits. As a normal person with normal GTC wouldn't even know that they're having a seizure before. And even denied that they had a seizure! Now its daylight here. And I'm at my workplace. Still my hands trembles and shakes uncontrollably. Its hard for me to write down on my worksheet. I'm still feeling lightheadedness and shaky. I'm afraid to tell my doctor coz surely he'll hospitalized me and suspend my driving license 😢

[@DefeatingEpilepsyFoundation]

@@bobidderis3880 I'm so sorry that things have been so hard and I hope you are feeling better. If things continue as they are, please tell your doctor because the last thing you want to happen is to have a seizure behind the wheel. I have had to surrender my license a few times and it is very painful and frustrating. With the lack of reliable public transportation out here in America, it makes it even more difficult. I believe you that the doctors didn't understand it. I have had so many frustrations with trying to get doctors to understand what I am going through. If you need anything, you are welcome to email me. You can email me at [e-mail].

[@brendonschliebs3839]

Hellow i pay your respect to the Comments on People Associated with Epilepsy it Does a great job and keeps the Encouragement Going in , them/ Living with it When ya Listen and Read Stuff Like it Sounds Great Just makes ya Fell 100% Better..Thanks Brendon. 😉

[@DefeatingEpilepsyFoundation]

You are welcome Brendon. We are here to provide support to the epilepsy community. Too many people do not understand the impact epilepsy has on someone's life. You are welcome to contact us anytime if you have any questions or if we can help in any way. our email is [e-mail].

[@smacdonald333]

I still haven't been able to decide whether living with "Dostoevsky" [Geschwind] Syndrome is the best or worst of all possible worlds. I'm lucky to be blessed with well above average intelligence where my mind is an optimal sorter of information and a calculating machine. Totalism and scepticism. Led throughout my life to believe that it's my duty to observe and deduce absolutely everything about reality. Like there's a demon sitting on my shoulder constantly whispering in my ear "don't stop... everything depends on you". Constantly jumping from project to project as if I have an infinite amount of time to work everything out. I have four degrees in four different disciplines [starting with math and philosophy], been to sixty countries always interesting in going to dangerous slums in poor countries to see how people live, and had always thought that it was a superpower to have a mind like this. And then the euphorias came without warning. There's too many contradictions to humanity. The universe is playing a trick on me. This can't REALLY be reality. The first series wasn't so bad. The second series... Improbable synchronic correspondence to the outside world. [Sitting in a restaurant] "I KNOW I have to talk to that random street person." "Jesus Christ sat under a tree and had his legs switched." "WTF??" Pulling random tarot cards with a random stranger, Ace of Swords. "Like the tattoo on my chest." "Ummm..." At the airport trying to get home. Boarding pass has 012 on it, assistant looks like the twin of a friend of mine. "I don't feel right about getting on this flight." "Well, you've got plenty of time to think about it." Go downstairs to think about it. Witness / overhear that there's some blatantly illegal smuggling operation going on right in front of me. "There's plenty more upstairssss... It's Christmassss... About five more hourssss..." "Ummm... okay, I guess I should probably get on my flight and get out of here." Back to my home city. It continues. At a bar I've been to many times. Start laughing uncontrollably at the ridiculous nonsense going on with during the World Poker Tour on the TV. Police are called. One night in solitary. No one can tell me why. "I must follow this person." We get into a weird conversation about history but in garbled chronological order. "Hmmm..." He pulls out a collection of dice. "Tell me what I'll roll." "Uhhh... [Poincaré conjecture comes to mind]... 3?" Correct. "Now what will I roll this time?" Glance at the die, see that it's a bunch of weird numbers. "Uhhh... 160... but it doesn't matter." Correct. "Okay, one more time." "5." Correct. "Okay you win." And on and on and on. I must be making it up, right? "It's impossible unless I've lived this life before." Everything falls apart. Messiah complex. Psychiatric wards. How is it possible to not go insane?

[@DefeatingEpilepsyFoundation]

Just reading this demonstrates how overwhelming it is. I have never experienced anything like this battling epilepsy. When I was younger, I would become very frightened before losing consciousness. Now it is more of a surreal feeling and I haven't lost consciousness since 2004. I have had people reach out to me explaining their seizures, some telling me similar feelings. Others have told me they become so happy, they don't want to take their meds because they experience severe depression when they do. It is a very complex form of epilepsy. Please take care of yourself.

[@vavacadoz]

What separates ecstatic auras from seizures? Is it whether or not it precedes a seizure following the experience? For a couple of years when researching my symptoms, nothing came up beyond adhd and bipolar disorder which never entirely matched up with what I experienced. When I discovered the term for ecstatic seizures, it really changed everything. May I also ask how many seizure types a person can experience at a time, and is it common for these to shift over time? I feel like the amount of criteria I can relate to invalidates the whole thing and I'm not so sure what to believe. I'll have to research more of course, it's just confusing.

[@DefeatingEpilepsyFoundation]

Auras are warnings that a seizure is going to take place. Researchers are now saying they are simple partial seizures and are localized. Seizures can change over time depending on the medication they are on. When I was a child, I had bilateral tonic-clonic seizures and then in my 20's, I have complex partial seizures. Since 2004, I haven't had any seizures that have caused me to lose consciousness. I had a few simple partial seizures when I was recovering from long-haul covid. It can be very confusing. I find I'm still researching material even for myself to truly understand what I have been dealing with for years. If you need help researching anything, please let me know. I am happy to help.

[@TLEawareness]

I’ve only had a couple of ecstatic seizures. They spawn all over the place and end in the left temporal lobe. So my auras can be very different. Usually they’re filled with fear though.

[@DefeatingEpilepsyFoundation]

Those are the same ones I had as a teenager. Sometimes I was able to calm down and other times they turned into a tonic-clonic seizure. They are very scary to have.

[@TLEawareness]

@@DefeatingEpilepsyFoundation mine didn’t start until I was about 19-20. So I lost a lot of my independence due to them. The couple of ecstatic seizures I had though were a trip. I got the feeling i was getting pumped full of energy and I was about to learn the meaning of the universe and why I’m here all before going into the complex partial and blacking out. Luckily I’ve never had to deal with tonic clonic seizures. I’ve only had a couple and that was during a seizure study while off my meds and stuff.

[@DefeatingEpilepsyFoundation]

@@TLEawareness I'm sorry that you went through all of that. Mine started at 2 so I have only known what it is like to have epilepsy. I can't imagine being diagnosed with it later in life. I have had complex partials as well and they can be very painful to recover from. I hope you are doing better now.

[@michaelschmitt447]

I told my doctor I was having ecstatic seizures. He told me he only gets depressive seizures.

[@DefeatingEpilepsyFoundation]

I'm sorry that the doctor didn't listen to you. Please keep a journal of the symptoms you are having. Seek a second opinion if you feel the doctor is not helping you.

[@DHforLife]

I had no idea this kind of seizure existed.

[@DefeatingEpilepsyFoundation]

I had no idea either. One of our interns brought it to my attention and wrote a paper about it. It has been an amazing experience learning about the different types of epilepsy that exists.

[@jennythomas-saltsman5678]

Please, is there a specialist who can help with this?

[@DefeatingEpilepsyFoundation]

An epileptologist or neurologist can help you.

[@michaelbarclay1280]

l thought l was going mad with them no doctor told me about this

[@DefeatingEpilepsyFoundation]

I'm glad the doctor was able to figure out what was going on. If you have any questions, you are always welcome to email me. Our email is [e-mail].