Note: Always CONSULT YOUR DOCTOR for medical treatment. Everyone is different and you will need and individualized treatment plan and tests for seizure-like conditions. The author's purpose is soley to offer advice for coping with convulsive disorders, such as PNES or NEAD.
I started going through puberty when I was 12-years-old, and just like all the other children my age, I wasn't entirely comfortable with the changes going on in my body. I felt awkward, and though the elder women in my life explained that all of it was natural, the transition sent me for a whirl, especially because of all the challenges I faced already with CP.
My right foot suddenly stopped moving and I had to give up walking all together. I felt like I was losing comtrol, and one night while typing, my vision began bluring. I felt very dizzy and weak. All of a sudden my body started shaking and I began balling. I started screaming for my mom at the top of my lungs and she immediately took me to the doctor, thinking that I might've had type 1 Diabetes.
They diagnosed it as a panic attack. Later on that summer, my father was wrapping up his weekly Bible study when I started shaking and crying again. My parents stayed by my side, calling my name, hushing me and my dad ocassionaly patted my cheek because my eyes were rolling back. They called an ambulance.
During my 7th grade year, the attacks grew progressively worse. I began to throw my body and hyperventilate and even scream out, while my eyes rolled and I spit up on myself. The most terrible part of it all was that most of the time, I was aware of my surroundings and could hear my teachers asking me questions, but I couldn't speak. I had learned as a little girl how to do the ASL manual alphabet, and by now could spell any word very rapidly, but almost no one that worked with me knew sign language, and if they did, I'd spell so frantically that even certified translators couldn't understand.
My right foot suddenly stopped moving and I had to give up walking all together. I felt like I was losing comtrol, and one night while typing, my vision began bluring. I felt very dizzy and weak. All of a sudden my body started shaking and I began balling. I started screaming for my mom at the top of my lungs and she immediately took me to the doctor, thinking that I might've had type 1 Diabetes.
They diagnosed it as a panic attack. Later on that summer, my father was wrapping up his weekly Bible study when I started shaking and crying again. My parents stayed by my side, calling my name, hushing me and my dad ocassionaly patted my cheek because my eyes were rolling back. They called an ambulance.
During my 7th grade year, the attacks grew progressively worse. I began to throw my body and hyperventilate and even scream out, while my eyes rolled and I spit up on myself. The most terrible part of it all was that most of the time, I was aware of my surroundings and could hear my teachers asking me questions, but I couldn't speak. I had learned as a little girl how to do the ASL manual alphabet, and by now could spell any word very rapidly, but almost no one that worked with me knew sign language, and if they did, I'd spell so frantically that even certified translators couldn't understand.
The attacks weirdly resembled tonic-clonic seizures, but for several reasons I was non-epileptic. The various tests showed no signs of brainwave disturbance. Eventually, my teachers grew tired and seemed to doubt that authenticity behind the attacks.
This greatly upset me. For the first school year following my first attack, I was literally having one every day. I never could go anywhere without my aid anymore. The attacks lowered very little in frequency for the next couple years. By the time I was a Freshman in high school, some of the staff, including a few of whom worked closely with me, began treating me as I was faking the ordeals just to get out class or for attention.
I began being absent due to illness and it was merely the grace of God that I passed to my Sophomore Year (by the skin of my teeth). I got really discouraged. I didn't understand why the people that I expected to support me the most in this, seemed to do the exact opposite. To make things even worse, some students would remark under their breath, "dude, you see the way she 'drooled' yesterday?" and "yo, that ambulance outside the school last week was apparently for that retard... Must've had a seizure or something..." (then they twitched their necks and let their tongue drop, joking about a seizure, while their buddies laughed).
Little did they know that I nearly succeeded in taking my life a few months later.
In my Sophomore Year, the attacks continued. They sometimes exhausted me so much that I would be nonverbal for up to 2 hours. Once, I had an attack far enough away from my mom that I had to ride in the ambulance alone and wait for her in the hospital. The EMT was nice, but because I couldn't easily communicate with her, it was a stressful ride. I was disoriented on the way and she had to hold me down on the gurney and told me she might need to give me a shot of medicine if I didn't calm down.
I wanted to scream, "I DO NOT WANT THESE... WHY CAN'T YOU REALIZE THIS? I WANT MY MOM I WANT TO KNOW... WHAT THE HECK IS WRONG WITHMEEEE!!!" When we got to the hospital, I was still having attacks and a doctor came up and very abruptly preformed a sternal rub on me. It made me startle from pain - which was the idea - and he simply and coldly said, "she's faking." I cried when my mom came.
In the beginning of Junior Year, I decided to do some research and stumbled across a convulsive disorder called NEAD or Non-epileptic attack disorder. NEAD can be triggered by any extreme emotion, happy or sad and is not caused by brainwave disturbance. Basically what happens is the body's Fight or Flight response gets overwhelmed and releases the emotion via convulsions that look extremely similar to those associated with tonic-clonic seizures. Having a probable name for the attacks gave me peace. I went for 5 months straight without an attack from November, 2012 to March of this year, which helped prove that my episodes are strictly medical.
With a wonderful support team now of teachers, therapists, friends and family, I have been learning how to cope and manage them through counseling and God.
When I do have an attack, it's significantly shorter and easier to handle. I no longer scream out or spit up usually, however there are times when I do drool. I have found that students are much more accepting of the attacks now, as I feel comfortable talking about them.
I am getting more aware of when one is coming and little-by-little am learning to work through them. I always remember one doctor that saw me in the ER for one. He said he used to have the same problem and that gave me such relief... to find out I wasn't alone in my experience.
MY TIPS FOR COPING WITH SIMILAR ATTACKS AND WHY:
1.) Create a united support team - this is essential. You should never face these alone. Gather school authorities, medical pros, friends and family together that will be able to understand the medical truth behind your condition and that can work WITH you to ensure your maximum success even with your situation. They should be flexible, honest, trustworthy and willing, as healing takes time.
2.) Prepare - give your team and anyone else who may assist you during an episode a DOs & DON'Ts card. Type this and it should fit only ONE side of the card. This way, the info provided can be easily memorized or scanned.
3.) Don't condemn yourself - this can be very easy to do in this situation. This isn't your fault! If you feel bad about an attack, breathe deep and remember that you are doing your part by getting support and talking with your doctor
4.) Get counseling - this is a common prescription from doctors for this. Counseling will give you a confidential place to be yourself, talk things out and hear objective feedback and professional advice. Talk with your doctor about your options!
5.) "Keep calm and carry on" - perfect for this! If you feel an attack coming, stop what you are doing and deal with it right then. Apply things you learned at counseling. If an attack happens without warning, it's OKAY. When it's over, gather yourself, breathe and finish what you were previously doing. Remind yourself that you are surrounded by people who love and support you in this.
MY TIPS FOR ASSISTANTS DURING A GENERAL ATTACK AND WHY:
(Please ask person for a DOs & DON'Ts card because it will provide more individualized methods of assistance; these are just basic, general ideas based on personal experience)
PLEASE REMEMBER TO GET MEDICAL HELP IMMEDIATELY IF THIS IS A FIRST-EVER SEIZURE BEHAVIOR. REMEMBER TO CLEAR THE AREA OF SHARP, POTENTIALLY HAZARDOUS MATERIAL DURING ATTACK. DO NOT PUT ANYTHING IN THEIR MOUTH UNTIL COMPLETELY RECOVERED / VERBAL. CONSULT DOCTOR FOR MORE INFO.
1.) Stay calm - as long as they are breathing and their doctor hasn't said it's dangerous to their health, they will be okay. Staying calm will keep them as calm as possible and even if it doesn't look like it, remember that this is a great support to them
2.) Don't leave their side - it's always easier to go through a frightening situation with someone by your side. Talk softly to them, reassure them. Keep telling them it's almost over and hold their hand or stroke their hair if possible.
3.) Empathize - during the attack, they might look at you. Make eye contact with them and softly verbalize that you're there and that you know it's a difficult experience, but it will pass. Your facial expression should match what you're saying
4.) Encourage - remind them that whatever they were doing can wait until they are better. This may ease some fear or stress. Maybe offer to help them accomplish their task after they recover
5.) Don't dwell on it - when the attack is done, and they are obviously recovered from it, don't talk about for a while unless they bring it up. Sometimes acting as though it never happened will help lessen or eliminate any embarrassment or self-condemnation all together. This may also help them feel more in control of the disorder or remind them that their life does not revolve around illness
FOR MORE INFO ON NEAD AND RELATED CONDITIONS VISIT: http://nonepilepticattacks.info/
This greatly upset me. For the first school year following my first attack, I was literally having one every day. I never could go anywhere without my aid anymore. The attacks lowered very little in frequency for the next couple years. By the time I was a Freshman in high school, some of the staff, including a few of whom worked closely with me, began treating me as I was faking the ordeals just to get out class or for attention.
I began being absent due to illness and it was merely the grace of God that I passed to my Sophomore Year (by the skin of my teeth). I got really discouraged. I didn't understand why the people that I expected to support me the most in this, seemed to do the exact opposite. To make things even worse, some students would remark under their breath, "dude, you see the way she 'drooled' yesterday?" and "yo, that ambulance outside the school last week was apparently for that retard... Must've had a seizure or something..." (then they twitched their necks and let their tongue drop, joking about a seizure, while their buddies laughed).
Little did they know that I nearly succeeded in taking my life a few months later.
In my Sophomore Year, the attacks continued. They sometimes exhausted me so much that I would be nonverbal for up to 2 hours. Once, I had an attack far enough away from my mom that I had to ride in the ambulance alone and wait for her in the hospital. The EMT was nice, but because I couldn't easily communicate with her, it was a stressful ride. I was disoriented on the way and she had to hold me down on the gurney and told me she might need to give me a shot of medicine if I didn't calm down.
I wanted to scream, "I DO NOT WANT THESE... WHY CAN'T YOU REALIZE THIS? I WANT MY MOM I WANT TO KNOW... WHAT THE HECK IS WRONG WITHMEEEE!!!" When we got to the hospital, I was still having attacks and a doctor came up and very abruptly preformed a sternal rub on me. It made me startle from pain - which was the idea - and he simply and coldly said, "she's faking." I cried when my mom came.
In the beginning of Junior Year, I decided to do some research and stumbled across a convulsive disorder called NEAD or Non-epileptic attack disorder. NEAD can be triggered by any extreme emotion, happy or sad and is not caused by brainwave disturbance. Basically what happens is the body's Fight or Flight response gets overwhelmed and releases the emotion via convulsions that look extremely similar to those associated with tonic-clonic seizures. Having a probable name for the attacks gave me peace. I went for 5 months straight without an attack from November, 2012 to March of this year, which helped prove that my episodes are strictly medical.
With a wonderful support team now of teachers, therapists, friends and family, I have been learning how to cope and manage them through counseling and God.
When I do have an attack, it's significantly shorter and easier to handle. I no longer scream out or spit up usually, however there are times when I do drool. I have found that students are much more accepting of the attacks now, as I feel comfortable talking about them.
I am getting more aware of when one is coming and little-by-little am learning to work through them. I always remember one doctor that saw me in the ER for one. He said he used to have the same problem and that gave me such relief... to find out I wasn't alone in my experience.
MY TIPS FOR COPING WITH SIMILAR ATTACKS AND WHY:
1.) Create a united support team - this is essential. You should never face these alone. Gather school authorities, medical pros, friends and family together that will be able to understand the medical truth behind your condition and that can work WITH you to ensure your maximum success even with your situation. They should be flexible, honest, trustworthy and willing, as healing takes time.
2.) Prepare - give your team and anyone else who may assist you during an episode a DOs & DON'Ts card. Type this and it should fit only ONE side of the card. This way, the info provided can be easily memorized or scanned.
3.) Don't condemn yourself - this can be very easy to do in this situation. This isn't your fault! If you feel bad about an attack, breathe deep and remember that you are doing your part by getting support and talking with your doctor
4.) Get counseling - this is a common prescription from doctors for this. Counseling will give you a confidential place to be yourself, talk things out and hear objective feedback and professional advice. Talk with your doctor about your options!
5.) "Keep calm and carry on" - perfect for this! If you feel an attack coming, stop what you are doing and deal with it right then. Apply things you learned at counseling. If an attack happens without warning, it's OKAY. When it's over, gather yourself, breathe and finish what you were previously doing. Remind yourself that you are surrounded by people who love and support you in this.
MY TIPS FOR ASSISTANTS DURING A GENERAL ATTACK AND WHY:
(Please ask person for a DOs & DON'Ts card because it will provide more individualized methods of assistance; these are just basic, general ideas based on personal experience)
PLEASE REMEMBER TO GET MEDICAL HELP IMMEDIATELY IF THIS IS A FIRST-EVER SEIZURE BEHAVIOR. REMEMBER TO CLEAR THE AREA OF SHARP, POTENTIALLY HAZARDOUS MATERIAL DURING ATTACK. DO NOT PUT ANYTHING IN THEIR MOUTH UNTIL COMPLETELY RECOVERED / VERBAL. CONSULT DOCTOR FOR MORE INFO.
1.) Stay calm - as long as they are breathing and their doctor hasn't said it's dangerous to their health, they will be okay. Staying calm will keep them as calm as possible and even if it doesn't look like it, remember that this is a great support to them
2.) Don't leave their side - it's always easier to go through a frightening situation with someone by your side. Talk softly to them, reassure them. Keep telling them it's almost over and hold their hand or stroke their hair if possible.
3.) Empathize - during the attack, they might look at you. Make eye contact with them and softly verbalize that you're there and that you know it's a difficult experience, but it will pass. Your facial expression should match what you're saying
4.) Encourage - remind them that whatever they were doing can wait until they are better. This may ease some fear or stress. Maybe offer to help them accomplish their task after they recover
5.) Don't dwell on it - when the attack is done, and they are obviously recovered from it, don't talk about for a while unless they bring it up. Sometimes acting as though it never happened will help lessen or eliminate any embarrassment or self-condemnation all together. This may also help them feel more in control of the disorder or remind them that their life does not revolve around illness
FOR MORE INFO ON NEAD AND RELATED CONDITIONS VISIT: http://nonepilepticattacks.info/