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What does a seizure feel like?

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Terrific Tonya Heathco

Many new to the life altering diagnosis of seizure disorder or caring for one with seizure disorder often ask me what a seizure feels like. I write this specifically for those that are in need of the information in order to help bring peace in a moment of their lives through education.Seizures are different for each person although the description often stays the same. For example, today I write about one of my episodes labeled a complex partial seizure of CPS. What convinced me to think it was a CPS? There was obvious neurological activity and I lost some amount of time. In the lost time, I am not sure I was aware. I also go not know if there was any physical cues for a seizure. I was alone during this time so all I have to go on is my memory. This episode was in my long term memory because it was so vivid and had strong emotions attached to it.

Read my experience and let me know your thoughts:

For a moment or maybe longer, it feels as if I’m physically going top speed on a downhill roller-coaster. I can feel the wind against my face literally although I am physically away from any wind blowing. The air around me is heavy and warm. I felt the heaviness weighing on my shoulders. I feel the “wind” in my face as time sped up just as one would if one were on a roller-coaster. Suddenly I hear a “slap”( as if I were being slapped) coming from my head and at the same time I feel the weight of a warm wet towel being thrown in my face,conforming to my face for a moment and falling away.Within the time of hearing the loud slap and feeling the weight on my face, all my vision went black. No blurriness, no movement, no pain, just blackness lasting for what felt like seconds.When restored, my vision was clear – no issues.

The entire episode left as abruptly as it came to me and left me with a moment of confusion and thinking “What the Hell was that?” I’ve had the same episode several times during the past 27 years. No fear, I consider the episode some sort of complex partial seizure. The vision issue tells me there may be an issue with my optical nerve and the whole episode tells me there may be another heterotopia cluster (tuber) making itself comfortable in my brain.

Immediately I took the next few hours away from everything and took a nap. No, I wasn’t tired and did not feel I had to lay down. Experience tells me during any type of seizure that if I do not rest, they get worse.  So, I took my own advice and napped the day away.I wrote this later in the day to serve as an example of what/how to journal new neurological experiences and to help you realize you are not alone in your journey.

For your information and my records I have included a record of needed information for my doctors:

Possible triggers – low grade fever,stress from bladder/kidney infection,headache,and the weather.

All meds taken on time – aspirin taken two hours prior for headache and fever

Hydration and nutrition – all on schedule

Sleep – 7+hours   Stress level – low

 

Please leave a comment below letting me know if you would like to read more descriptions of my seizure episodes or the episodes of others that experience all types of seizures. Remember, National Seizure Disorders Foundation is here to help you adapt to the life altering diagnosis of seizures and seizure disorder. Know that you are not alone.

 

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31 Responses to What does a seizure feel like?

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  3. Hello. I was in a wreck in 92 and had a bad TBI that involved my temple lobe. From that it caused migraine headaches, bi-polar, bad memory problems, and a seizure disorder. My seizures were refered to me as tics. My head would just move a little to the right and my left arm might jerk a little and I would forget what I was doing or talking about but I wouldn’t realise my head and arm would jerk but others around me would. They had been completely controled for years until just a few days ago. I went to bed and after I laid down I got a very strange feeling and then my head started jerking to the left very hard and it would move my head several inches to the right. My left arm would jerk very hard and my body would tense up and jerk. It did this around 20 times and my neck hurt from the jerking. I was taken to the local hospital where they put me on a drug, did an ekg, cat scan, and xrays. The drug they gave me was ativan and it made me sleep for several hours. They could not do an eeg because there was no one there to do it so they transported me to a nearby city that could do it. When there I was still asleep and could not be awakened. The nurse told my wife that was common for the drug and seizures can make a person tired on top of that. They did an eeg which showed nothing. The next day I went to see my neuro doctor. she told me that they could not be seizures because the eeg showed nothing and it was just because I was stressing. But she upped my dosage of my seizure meds and told me not to drive for awhile. Since then I have been having several of these (non) seizures every day. Since my head injury I have had alot of seizures but not as bad as these but I more then know what the seizures I was diagnosed with in 92 feel like and I know these are seizures I am having now and since they are worse then what I used to have I fear that it could lead to alot worse of a seizure. I am not happy with my neuro dr and I am thinking I should get my records and go see another neuro dr. What do you guys think?

    • Chris,

      You are taking the best action for yourself in reaching out for support and answers. I commend you on this brave step toward positive seizure management.

      You must understand, you have power to be your own best health advocate. You have the option to seek a second opinion from a specialist with more experience. We suggest an Epileptologist.

      I am following this with a private and detailed email. Look for it in your inbox soon. Among the information in the email will be links for resources and more support.

      Thank you for listening to your heart and reaching out for help. National Seizure Disorders Foundation continues to walk with you as you journey toward positive seizure management.

      Sincerely,
      Tonya Heathco,CEO
      National Seizure Disorders Foundation

  4. I am now 21 years old, and have been epileptic nearly all my life. The first seizure I could remember was when I was 7 and I was attending an Easter service at my local church.

    There was a play of the crucifixion of Jesus Christ, where they carried an actor out on a cross, and pretended to nail his hands to the sides of the cross, and during this, the director used a small amount of fake blood on the actor “Jesus”‘s hands. I watched from the 3rd row, and suddenly I felt so cold and clammy. I did not want to cause a big scene at church so I sat there waiting it out, hoping it would go away. This sensation last for about 10 minutes when I started feeling my skin feeling heavier and heavier. I looked at my Mother who was sitting next to me and whispered to her “I don’t feel good”. When she looked down at me, her eyes widened and held me close. Everything went black after that, and when I awoke, the play had stopped and the worship room was empty. My mother cried and cried waiting for me to wake up, along with the cast of the play who had surrounded me waiting for me to awake.

    I was unfortunately, born with epilepsy, and I have not been controlled with medications. I am able to drive and work full-time because I experience long auras, where the same sensation happens. The cold, sweaty, achy body, followed by the sensation of being pulled to the ground, and always falling unconscious momentarily.

    I have always wondered, does anyone else smell anything strange before or after their episodes? The best way I can describe mine is like a television being burned, and maybe burning Styrofoam or plastic. It’s a very industrial type of smell.

    Thank you all for sharing your stories!

    • Bonnie,

      Thank you for sharing your experience. I encourage you to join our FREE and private seizure support community on FaceBook, NSDF Community.

      As for smelling unusual scents, this is referred to as a sensory seizure. This may also be part of your aura. Keep track of these episodes and when you see they are occurring too often, please consult your doctor.

      Let me know if NSDF can be of further assistance –

      Tonya Heathco, CEO
      National Seizure Disorders Foundation

  5. I’m new to this seizure thing since I only had one and was told I have mesial temporal sclerosis was not told in depth but the one I had was at work I remember walking outside felt like my vision kinda went all over the place felt a funny jolt walked back inside and everything went black and woke up in the hospital I’m always scared to have another but since it was 2 years ago I get paranoid everytime I feel funny.

    • Robert,

      It’s important that you understand your diagnosis and be examined by an Epileptologist. Even more important that you feel safe instead of paranoid. It may be that you never have another seizure and it may be that as your condition progresses you may experience more than one seizure. I encourage you to educate yourself on seizures and seizure first aid so you can help those around you understand what to do if you were to ever have a seizure. Also, talk with your doctor about the possibility of having another seizure. Being prepared will help you overcome the paranoid feeling. Let us know as you need more support.

      In Peace-
      Tonya Heathco,CEO
      National Seizure Disorders Foundation

  6. tonya. they say life is no walk in the park well thats tru for some of us but we are the warriors ..
    last seizure i had it was like i had a vision of what was going 2 happen.
    ive had 2 many kinds of seizures in one life

    • Tammy,

      The vision was an aura. These are common among seizure survivors. Please keep written record of these auras as well as all your seizure activity. The most effective way to approach these events is to recognize what is happening in that moment without feeling fear or stress, get to a safe place, and prepare for a seizure if there is time to prepare. Also, something to focus on is every seizure free moment. Think not about the past, even from moment to moment, but focus on what is happening in each moment. When you refocus your mindset from all the seizures you have experienced onto the power within you now as a survivor, you will find more moments of Peace. Please keep in touch.

      With Undying Support,
      Terrific Tonya Heathco, Founder
      National seizure Disorders Foundation

  7. My name is Aymee and I have had seizures sense I was about 10 or 11 years old, before we even knew what was wrong with me I had, had a small spell one night in my room and feel and broke my leg in two places, when the doctor asked what had happen I told him I didn’t know, all I knew was that after I fell I was jerking a lot but still could talk to you and tell you was was going on. Well it wasn’t till after my leg had healed that my grandmother had gotten home one night and I was asleep on the couch and she woke me up and told me to go to bed and I went to tell her goodnight I fell down on the floor and was sitting on the for jerking, it scared the you know what out of her. The next day she took me to the doctor and he told her that I mit have Epilepsy, I was set up for some test and went to them and they found our that I did have epilepsy, but didn’t know why I had it because no one else on either side of my family has it. I was put on depakote 250mg twice a day for a long time, I was ok on it through my teen years I would have a Grand Mal probably once a year if that, then once I got older my seizures seem to have gotten a lil worse, I have been on depakote, dilantin, and lamivtial, ( had to change that one because I couldn’t afford it) now I’m on tegretol. I still have small spells once in while some are so small that it doesn’t really bother me some are rather hard that I’m scared I’m going to go into a grand mal, and my heart just starts racing and I have to sit down so I’m not falling and there are times where I feel wide awake and fine but I lay back done and fall asleep and will go into a grand mal. I think what brings mine on is either lack of sleep, or stress. If I’m sound asleep and someone comes and wakes me up, and it scares me I sometimes will have small hard spells, or if I am getting really stressed out right after I have just woke up that can bring them on also. But the times I have had a grand mal, it is really scary for me once I have came out of it, my head is pounding, my whole body is weak, my tongue hurts from where I have bit the sides of it I don’t know what has happen all I can remember is was happened before I had it, and all I do is cry after coming out of it, and I just want to be comforted or pet my cat lol. I do get rather depressed sometimes knowing that I have epilepsy, cause I don’t like it when my friends or family see me go into a grand mal and I rather not have my son see me go into one because he really is to young to understand what is wrong with me. And when I have these spells or grand mals it just makes me that more sad. I hate always having to go to the doctor for blood work, or get a eeg or mri done and the last time that I did those they didn’t see anything going on. Mine and my husbands money is rather tight, I can’t afford to go to the doctor all the time or pay for meds even with insurance. My husband and I want another child but I had a regular doctor tell me that it wouldn’t be safe for my to get pregnant on the meds I’m on even though it’s in the same catorgy or whatever as the dilantin I was on when I was pregnant with my son. I just wish I didn’t have this because other then the seizures I’m a rather healthy adult.

    • Aymee,

      Thank you for sharing your seizure journey with our readers. I know your words will bring
      peace to many and help many unaffected by seizures get a look at what happens in the
      life of a child and adult with seizure disorder.

      Please understand, Epilepsy is not always hereditary or genetic. Stress and lack of
      sleep are the two most prevalent seizure triggers so please do watch your quality of
      sleep and your quantity of sleep. We as seizure survivors need 10-12 hours sleep in a
      24 hour period. Stress can be managed and when you are ready,helping you manage stress in one
      of the helps we offer you FREE of charge.

      You expressed concern of family and friends, especially your son, watching you go through a
      seizure. Know that they are concerned however they love you and are a great support system
      for you. Allow them to help you through this without you feeling guilty. As for your son,
      my granddaughter has known of seizures and has helped her mom and I through our seizures
      since the age of 2. No one is too young to learn about seizures. Who knows, he could be
      the key to your peace. My grad-daughter has always been able to bring my daughter out of
      complex partial seizures. Since age of two she pats her mom on the shoulder and says the words
      “Angel” and “Peace”. This helps her not feel so helpless.Consider my words when thinking of your son.

      Upon closing, please know you are not alone. I and NSDF are here for you.

      Peace&Love -

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation

    • Get a second opinion regarding having children. I have 2 healthy girls and suffer primarily from partial seizures. My sister also has seizures and has 2 little boys. Main thing, get the advice of a ob/gyn and neurologist. My doctors spoke to me and to each other prior to my pregnancy and both were in agreement as to what I needed to take to safeguard me from seizures and not harm the baby. Mine and my sister’s pregnancies were well planned and we both used different drugs to control our seizures. You may be able to have a healthy baby inspite of your seizures. Don’t base your decision on one doctor’s opinion.

      • Very good suggestion Terri. Keep in mind every person and every seizure disorder is different and unique. Aymee and others will need to consult directly with their neurologist/epileptologist and OB/GYN to gather information needed to make an educated decision as to move forward with forming a biological family or getting the much needed second opinion. I appreciate the input Terri!

        Hang onto Hope-

        Terrific Tonya Heathco,Founder
        National Seizure Disorders Foundation
        NSDF Community

  8. This site is amazing! I have suffered from seizures over the last five years, cause unknown – solely Ive been told an adult onset of epilepsy. However, over the last year they seem to be worse in both frequency and appearance. I too experience the STRANGEST feeling that overcomes me…. the aura is so fast that I dont have time to respond such as sit down so that I dont get hurt. My seizures were diagnosed as temporal lobe – complex partial seizures. I sometimes have an aura but other times it hits so fast I dont remember anything. I experience (according to what Ive been told) heavy drooling, jerking of the hands / arms, babbling, etc,. I know that i am going into a seizure but remember nothing about what i am doing during them. I know that they last anywhere from 20-45 seconds. I also cry aftewards ALOT solely from being so frustrated.

    However, I have tried THREE different Meds and so far nothing is working!! I am extremely frustrated, because the doctor has said no driving for 90 days after a trial of this medcation. I live in RURAL America, and I mean 40 miles to the nearest grocery store way up in the mountains. And there isnt such a thing as public transportation here. Its been the most frustrating process because at this juncture I cannot even work. I found this place and hope others can relate to me!!!

    • I have had seizures all my life and I am 62 yrs young. When I was 9mo old I experienced a very high fever and seizures that lasted several days. No one thought I would survive. When I stopped with the seizures and the fever left me I was like a newborn. I could not feed myself, sit up, etc that a 9mo old would have done. As a teenager, I used to say I just do not feel right and the dr said that it was a buildup of water around by menses and ovalation. They put me on water pills to help. Nothing would make me feel better. After marriage and becoming pregnant with my first daughter, I was on my way for a pregnacy checkup and ran off the road. My Mother was with me and controled the car so none of us were hurt. When we got to the family dr she explained to him what happened. I was placed in the hospital and had a series of testing done. That was when they discovered that I had temporal lobe seizures. Placed on meds and off I went. Had a healthy daughter and joined my husband in the Navy to live as a family. The drs were baffled that no meds would help. It was not till I was pregnant with my second daughter that I got an answer as far as why my seizures actually started when I was a small baby. He told me that in that time of medical knowledge, I was probably suffering from meningitis and was misdiagnosed. He also explained to me that when and why I have a seizure, my brain becomes so overwhelmed with the problems of life that it just clicks off and says I need a rest. Therefore, I have a seizure. When I have a seizure all is every quiet and I am in absolute peace. It is a feeling of solitude, and almost like when you walk along a deserted beach, that feeling of comfort and solitude. After going thru many many meds and nothing helping when I was 50+ yrs and going thru menopause the gyno placed me on a hormone. My seizures began to worsen and my neuro said it was the hormones and immediated had me stop them and my seizures got better. Growing up I always said that it was a hormone change that caused me to have seizures. No one listened but my own theory was they would only happen prior to ovalation and the day I would begin my mense and again when I would stop my mense. They were also likely to happen when I was under a lot of stress. I could handle the emergency but as soon as I started to calm down they would hit me. I had a VNS implanted about 10 years ago and also started Keppra and it really helped, especially after I went into menopause completly. Now only if there is a real stressful happening do I have one. HORMONES are my worse enemy and I had always said that. I only learned this for sure in the last 10 years. In the meantime I have learned that there was to be no driving for me and many times I felt lonely and of no use to the world. i have since learned to adjust and even though I have to depend on somebody to take me whereever I may have to go life is great. If you are a woman use this as an example and guard yourself from homones which could be birthcontrol pills or just from the stress of everyday life and stop to think what is happening when I have those seizures. God Bless all of you.

      • Juneen,

        You are a true warrior! I am honored that you shared so much of your story with us here today. Thank you for pointing out that seizures can be triggered by hormones. Not even many doctors understand that concept today! You stated” I have learned that there was to be no driving for me and many times I felt lonely and of no use to the world. I have since learned to adjust and even though I have to depend on somebody to take me where ever I may have to go life is great.” This is one of the most encouraging statements I have come across in my journey as an advocate and survivor of seizure disorders. One focus of NSDF is to help seizure survivors and caregivers adapt to the life altering diagnosis they have been given.

        Again, thank you for sharing with our readers today. I know with your words you have helped many.

        Peace& Love -

        Terrific Tonya Heathco,Founder
        National Seizure Disorders Foundation

          • Thank you for taking the time to read my story. Have you online and offline support for positive seizure management? Please, look me up on FaceBook http://www.facebook.com/tntonya and friend me. When you are ready to join our private seizure support community of FaceBook,NSDF Community,request to join or message me and I will add you. You are not alone in this journey and the more people you have sharing the journey, the easier it gets.

            Feel Peace -

            Terrific Tonya Heathco, Founder
            National Seizure Disorders Foundation

      • Juneen ~ I related sooooooooooo very much to your story. My name is Julie & my seizures began following a severe car accident with a closed head injury/ coma(for
        days following) When I awoke I thought I was someone else – Not “Julie” & had to learn
        how to walk & talk again. During my coma I had a birthday and turned 23 – when I awoke from the coma I thought I was three years of age. Well, seizures began and I am now 48 years old & suffer having grand mal seizures quite often. They happen for the most aproximately every 4 to 6 weeks – but a time of stress overload can bring one on too. I am currently on no meds & would like to find only natural homeopathic ways to control my seizures. I try to eat healthy and have limited sugars in my diet. I do sleep very well – 8 to 9 hours . I have a loving family / husband and three children I feel I have put thru “Hell” with my seizures and the following days of recouping. I am sooo very frustrated – often getting depressed with dealing with this disability. It’s so nice to be able to speak with others understanding the true feelings of seizures . May God Bless You and let us pray that he will bring us all closer to him.

    • Lineah,

      You are not alone. I’m so glad you found National Seizure Disorders Foundation. Seizures can be very frustrating because they are life-alerting. Know that there is Hope. Hope for control and hope for peace once again in your life. I encourage you to consider becoming a member of our private seizure support group(NSDF Community) on FaceBook. There you will find people ready to support you and love you through the journey of seizures.

      I also encourage you to refocus your point of view. Many times the stress of frustration alone can trigger seizures. Stress in the number one trigger for all types of seizures, so managing your stress should be a priority for you. NSDF can help you with stress management when you are ready.

      Have you started keeping a seizure journal? Written as casual or formal as you want. Basic details:date of seizure, severity rating, type of seizure, and other comments such as aura and possible trigger. If more information is needed to help you with this, please let me know.

      Have you been examined by an epileptologist? Please let me know. This is important and NSDF can help you find one.

      Please keep in touch. Look through the rest of the information on this site. Enjoy the stories of others and enjoy the videos for education and inspiration.

      Peace&Love –

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation

  9. Hi Tonya

    Your seizures involve alot of sensory changes as well as vision changes which leads me to believe that your seizures involve the parietal lobe (sensory) and occipital lobe (visual cortex). As you ar well aware, the brain is a unique, complex network and when our neurons “misfire” they tend to travel to different areas of the brain, depending on the type of seizures you have.

    My seizures start in the parietal lobe because everything sounds like it is in surround sound or an echo or a heightened sense of awareness. That is my aura which is considered a SPS or simple partial seizure and lasts a few minutes. During this time, I am aware of my surroundings and function normally; basically, I could be having an aura and no one would know unless I told them. Then comes the seizure, most times although I can have auras that do not lead to seizures. I have complex partials that travel from the temporal lobe to the frontal lobe. I lose awareness but not consciousness (most times); am confused; have loss of motor skills (frontal lobe); my muscles stiffen and twitch especially my face; I can see and hear others around me but vision is hazy. I sometimes hallucinate (temporal lobe) that there are others around me that aren’t there and if it’s not a very bad episode, I can speak but make no sense. I remember some of the seizure when I am post ictal yet I am dazed, confused, muscles are weak so walking is hard, make no sense when I do speak ( I dont make much sense even when I am not having a seizure. HAHAHA), have a horrible headache and am very tired. That’s a typical seizure but since the brain is so dynamic they certainly can be slightly different; I can also have a secondary generalaized seizure after the complex partial. Those are fun :-).
    Our seizures may be different but all epileptics go through the same feelings at one point or another. I have had epilepsy for 18 years (head trauma from a car accident) and my seizures have drastically changed over the years. And so has the way that I deal with them- my motto is “my seizures may or may not get better but how I deal with them certainly can”.

    Love you Tonya & hope you are doing great!! I am sorry that I havent been a good leader lately but I am starting to feel better each day. Some days are better than others.

    • Thank you,Kerri, for bringing the NSDF viewers a bit more experience and knowledge through sharing details of your seizures. You stepped up and helped National Seizure Disorders Foundation eradicate stigma by showing our readers that seizure survivors can be brilliant! I am honored to have you as a member of National Seizure Disorders Foundation and leader of NSDF Community.

      As you know every seizure disorder is unique yet similar. Epileptologists have told me seizures I experience are all over “the globe”(my brain). I’m very impressed with your knowledge of your own brain and your own seizures. Keep up the brilliance!

      Enjoy Peace-

      Terrific Tonya Heathco, Founder
      National Seizure Disorders Foundation

  10. hi my name is rebecca i’m 12 years old and i have had 2 majors when i had my first we didn’t know what was wrong so when i went to the hospital the doctors didn’t know why i had seized then after many test they i had epilepsy and i got it from my great grandpa it was so scary because i did not know why i was in the hospital till my mom told me my who;e family was so upset a specaily my great grandpa he felt that he could stopped mew from having a seizure but, i knew it wasn’t his fault

    • Hi Rebecca,

      I applaud your courage for posting this piece of your seizure journey for all our viewers to read. I am honored you chose to speak out about your seizures. You are right, it is not your great grandpa’s fault. Now he and the rest of your family can help you manage your seizures by learning more through National Seizure Disorders Foundation. I look forward to learning more about you. If you are able to be on FaceBook or have a parent active on FaceBook and would like to be a member of our private seizure support group NSDF Community, please let me know. NSDF is here for you, a seizure survivor, and for your parents and other family members, your caregivers. I encourage you and your family to read through the interesting information found on this site. Feel free to contact me with questions or when you need support. You can reach me through email NSDF37029@gmail.com

      Love&Peace-

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation

  11. This was so interesting and helpful!
    My son has been having seizures for 10 years now. The worst one he had was a year ago and he lost his vision for 45 agonizing minutes. One of the scariest days of my life!
    Thank u for taking time to help others with seizure disorders! May God bless you today and everyday!!

    Shelley Honea

    • Shelly,

      You and your family are in my prayers and are welcome in the supportive family of national Seizure Disorders Foundation. Connect with us on FaceBook and become a member of our private seizure support community – NSDF Community. You will Find more people to help you, support you, and accept you in order to bring a moment or more pf peace into your daily life.

      Thank you for your compliment on this article and thank you for taking time and energy to write a comment. Visit often as I post on a wide variety of interesting seizure disorder topics. I invite you to take your time in this site and get to know national Seizure Disorders Foundation and what we do for you and others.

      Peace & Love -

      Terrific Tonya Heathco, Founder
      National Seizure Disorders Foundation

  12. Thank you for sharing! I myself had a weird experience just the other day.I was still asleep and had a seizure, it was almost like I was outside myself my hands and wrist were hurting from the way they contrated, and somehow I had bit my tounge it was sore. It was almost like a dream , except the sore parts of my body. I have had this happen a cou
    ple times now, so I am going to talk to my Dr. About it.

    • Good way to positively take control of managing your seizures Tammy! I suggest for your future benefit to take a moment and write out what you remember from this episode. Write it down and date it. This will begin your seizure journaling if you are not already active in this healthy and helpful practice. For more on seizure journaling, please connect with NSDF again.

      For online seizure support in a community atmosphere, I invite you to join NSDF Community through FaceBook. We’re a community of seizure survivors ( like yourself) and caregivers ready to accept you with love and support.

      Peace & Power -

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation

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