How I almost died from PNES - THIS IS A LIFE THREATENING CONDITION AND NEEDS AWARENESS!!
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- เผยแพร่เมื่อ 19 ส.ค. 2014
- www.transferoutpnes.com I have to be completely honest, when I came to this realization, when I was inspired with that thought, I was immediately excited… and then filled with an unsettling anxiety. I never thought about it because I was so practiced in living in today that I hadn’t thought about that time. I had put it out of my mind because that wasn’t my life anymore. When I started to think about it I remember the fear each time because I knew I was about to become a prisoner inside my body; I could hear everything around me but even after the seizure passed I couldn’t let them know I was inside, completely aware. After I was able to regain control I could tell them exactly what they talked about the entire time, even during the seizure. Remembering also brought back the memory of the physical pain I felt anytime I started to have a seizure and was in a less than ideal position. I remember having my arms on the armrests of my chair and as the rigidity set in and my limbs began to contract, I can feel the pain I had when my body was trying to force my arms inwards but they were being physically blocked from doing it. I remember the most terrifying event I have ever gone through - the day that I had a seizure while I was sitting up in my bed, and when my body went limp sliding face first into a pillow. I remember the fear that came over me at knowing I was going to die. I wasn’t afraid I may die - I knew I was going to. I was screaming out in my head - I was praying so strongly - I didn’t want to leave my children. I can’t help but cry as I write this. I had never felt that before, to know I was about to die. I was face down for what seemed like an eternity but in actuality was about 5 minutes. It was only because my guardian angels had come to check on me that I can even share this. When they came in my hair was covering my face, if they hadn’t moved my hair off my face in that gesture of compassion and love they wouldn’t have seen that I was completely. My eyes were open, and they could hear by the gasps of air I swallowed and the uncontrollable sobs that began what had almost happened. We were all in a state of shock. I couldn’t really talk for the rest of the night - I couldn’t get my mind around what happened. Over the next few days as I came out of my shock I realized that this was a true fight for my life. There wasn’t anything I wouldn’t going to do to overcome this.
I have updated my definition (as I shared on a more recent video). PNES is a red-flag disorder. Our brain is throwing up this HUGE red-flag, pleading for us to pause, watch what is happening, notice that things just aren't right in our life and pleading with us, using these "seizure-like" events to get our attention
when it sends a redflag like this, what is it showing tho?
I've been dealing with this condition for over two years now. My therapist says it stems from my PTSD.
Life is hell. I can barely deal with daily stress, and if I am hit with more than two triggers at a time, I have a seizure. Last Friday, I had a really bad one in front of a family member who did not know how to react and restrained me on my back. If my boyfriend hadn't intervened, I could have asphyxiated on my tongue. There really needs to be more awareness! We tried to educate this person, but he won't admit my diagnoses are real because they are "invisible" (PTSD with PNES, Autism, depression, anxiety, auditory processing disorder). Ive been trying to explain how it feels to live with this for ages (I also get the buzzing in my head. When I start holding my head and muttering about the bees, my boyfriend knows that I need an immediate decrease in sensory stimulation because I'm about to drop and flop) and everyone acts like I'm making it up! One "friend" (who had never witnessed one of my seizures or even a meltdown) even went so far as to tell me they're not seizures, they're psychotic episodes! -_- It wasn't until I found my current therapist that I finally found an answer and learned it can be a stress response. It happens when I am already in meltdown mode and I'm hit with a major trigger, like being yelled at (even in a non-angry way) or being cornered or even certain smells. I'm finally reaching the point where I can identify what triggers these seizures and meltdowns, but I can't stop that train once it's already rolling and my boundaries are not being respected. :'(
Sorry for the ramble. It's been a lonely time. My boyfriend and I have nearly zero emotional support beyond one another. People tell him he's either a saint or he's stupid to be with me. We're pretty much on our own.
Thank you for sharing. I'm glad you have your boyfriend.
You're not alone, in fact you've stumbled onto the right path...my path. God's got me doing this for a purpose and has blessed me beyond belief to help hundreds already gain some control over this debilitating condition. I help both the person with and supporters of. I'd like to give you my email so you can contact me with any questions on how to acheive a seizure-free life. Until then...Christine
Drivenbyme.net@gmail.com
Good news! As of March 13th I will have been seizure free for 1 full
year! I credit the incredibly difficult work I've been doing for the
past three years, and the amazing therapist I now see. Tapping and CBT
have helped me tremendously. I now have the strength to draw the
necessary emotional boundaries to protect myself, and it feels amazing!
:)
Luna Callowyn Praise God! That is excellent news!!!
Luna Callowyn I am in the exact situation. I'm getting auras right now just for trying to learn about it. I'm starting a vlog pretty soon, its the only way I won't sign myself over to the State for a lobotomy. if you want to talk, id love to
I as well have PNES. Just today I fell with such force in church I almost broke my neck... I'm sorry you are going through this. I honestly don't know what to say besides thank you. For raising awareness. Things are tough. Especially in the medical aspect. Nobody recognizes PNES as the issue it is. The only place I've been respected at all is Children's Hospital. Best of luck to you. And to everyone similar.
Rarely supported or taken seriously by paramedics or Emergency Departments.....it makes it so hard. Intubation to save lives when one becomes status epilepticus. Having a management care plan & being prepared once familiar with them has been so vital for safety. Broken wrist, falls with serious injuries is "not" faking it! These seizures can be serious.......my heart goes out to those of us who have to live with the disorder. Omg your a strong woman.....thanks for posting this. Children can keep us strong. I wish Pnes was respected for how debilitating it is to the sufferer, their family and friends. It is real. It is scary. It is debilitating when not under control. The stigma is awful...... I agree unity world wide advocacy is vital to our disorder and fair discussion occurs.....not factitious, not malingering. Your not alone..... I can relate too!
I saw an epilepsy specialist who also sees PNES patients (30-40%) and she told me that in many ways, she feels PNES is harder to deal with, both in the severity of the seizures (yes, she does call them seizures without qualms) and frequency/duration.
Thank you so much for this video! It’s a very difficult thing to talk about because of the stigma attached. This is a poorly understood, misdiagnosed and mistreated condition. The psychological aspects of this condition are symptoms, the cause is physical. I hope you are continuing to recover and I wish you lots of love 😊💕
Thank you! Yes. I appreciate your encouragement
Awareness does need to be spread and I am so sorry you have to go through this. I have been diagnosed with PNES as well and have almost stpoped breathing because of it. Luckily I was in the hospital and they put a tube down my throat. Since then I have swallowed my hair choked/ suffocated myself from contracting my throat muscles and lungs. And laying on my face. I dont remember my seizures and it is very dangerous. PNES isnt taken seriously and it should be. I wish you the best and thank you for sharing your story. Take care
Jamie Lynn Jamie Lynn I can help you. i have recovered and help others, doctors and therapists/social workers to help their patients, since i recovered without aid from medical community i guess i have a perspective they aren't familiar with. it has been 2 1/2 years since I began my recovery
its a great thing youre doing. People need the help and support for something so misunderstood
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This happens to me! I can't believe how accurate this is to things I go through, that I had thought were a bunch of random, unconnected, things... I have been becoming more aware of some patterns within the episodes (I also call them!), but I really had no idea they were part of the same syndrome, and I for sure have had the catatonic experience, usually at the end of what I guess are simple seizures, or even when waking up the next day, or when feeling hopeless even, not being able to move my legs, my body in general, not being able to get moving, not being able to get up to go potty, not wanting to face people also with my warped sense of fear that something will go wrong, that no one will help me, listen to me, or even believe me, and I won't be safe. I had thought that was simply public phobia, and not related to seizures at all. Though I was aware that extreme emotions or stress usually led to one of these shaking incidents, the catatonic sometimes would leave me unable to move for hours, until my situation becomes so severe, that in order to get someone's attention for care, the only thing I felt I could do was react harshly to my inability to move by suddenly yelling or throwing something... something that comes from a primal, instinctual side that breaks the inability to move, or generally freaks out my guy, or causes him to go away from me, probably assuming I'm faking (when I was just fine for days, weeks, months before). This has led to me getting urinary tract infections, paranoia about being around people who would restrict my freedom because of it when I can't explain or even understand it myself, sometimes go hungry, sometimes freeze nearly to death, sometimes not feel like I'm going to keep breathing. Thank you so much for posting this! It's a very accurate new direction to go for me. Thank you SO much!
At first I had an attitude about (mostly) female PNES sufferers. I didn't pity them much. Seriously??? Having a fit? Screaming?
Then I checked myself. I, too had a difficult upbringing and teen years. I was told to shutup when protesting bullying from my brother. I was ignored when sharing thoughts and feelings. My mom drank. My BIL tried to molest me. I had few friends, and was a sad loner. My jr high nickname was "mouse". I was so depressed.
But, Id get up and go thru the day like a zombie. No outbursts, no screaming, no drama, nothing.
That's how I coped. The stress inside was like a kettle boiling over. I had no one to talk to. I realize now I dissociated alot, cried alot and felt numb.
All 3 of my daughters went thru mental health crises in teen years. No PNES, but more of the kinds of symptoms I had.
I don't know much about PNES. But, I'm willing to learn, and not judge.
Read "Complex PTSD..." by Pete Walker
Very brave of you to share. Did you know you can get seizure safe pillows?
It does give me headaches alot and it makes me shake. Speech is slurred as well.
Samantha Rowley I can't relate to the headaches but remember that these are energy being released, which takes power. our bodies work by electricity and water - we must replenish our reserves with water, electrolytes and my remedy is broth
Duriel Devers i will help Duriel.if you are willing to go to any lengths i will even guarantee you will become seizure-free. call me at 407-968-6702
Have almost drowned in tub several times. My family knocks on door several times to make sure am ok. I will not shower or bathe unless wife is home.
I have it too, there not much out there for this illness thank god for christine
I want be seizure free clearly I can’t call as in Uk
Thank You for sharing. God bless❤️
Thank you Roger - God bless you also
I was told that I have pnes on February 2020. I live way back in the country, so all I get is internet. I've been so thankful for these videos and the people who make them and know what it is really like to have it. I can't say thank you enough.
Thank you Thomas! I’m the lead of a support group that meets up to 4 times a month. We have 9 active members currently. It’s all geared to heal, learn, grow so that we can live free and purposefully. If you have any interest, feel free to reach out to me at Christine@TransferOutPNES.com
I was diagnosed with PNES it took 4years for me to be diagnosed. As u say u were in the hospital for 5days then jus being discharged as if it was nothing I felt the same way . I came out of the hospital more confused, worthless and helpless . I came home embarrassed not wanting to speak about PNES nor tell the most important ppl in my life my parents . Suicide was on my mind thankfully I came across this video so I thank u so much for sharing YOUR story . YOU truly saved MY Life .
Praise God! He truly is behind this channel!!! Oh please contact me so i can help. Either email (drivenbyme.net@gmail.com) through Facebook
My wife has this from childhood trauma and I feel so helpless to help her. We are just at our ropes end.
Check out my site at TransferOutPNES.com if she is interested in one-on-one PNES coaching
this has really moved me. I have pnes and used to have 200 a day. now have them once a month or so. thank u for making this video Ur so inspiring!
+Jemma Gates Thank you so much for saying that. This channel has really motivated and inspired me to try new things so i can tell others what works. Can I ask what tools you use that have given you so much success? From 200 a day to once a month --- wow! That's inspiring! What methods have you tried and what has worked the best? Thank you for whatever you feel comfortable sharing.:-)
Sorry about the late response. I left my job in a call centre and the relationship I was in ended as it was not healthy for me. It was contributing to the seizures I was having. I focused on getting better and not being too hard on myself if I had blips. I meditate daily and if I don't I notice how much more anxious I get which brings on the seizures. Meditation all the way!!
+Jemma Gates you're a strong person. A tribute to how Pnes and a deserving lifestyle can integrate into wellbeing. Good for you! 👍
Thank you so much for sharing. It is so scary to not have any control over your own body. I too suffer from PNES, and so much is still unknown about it. There is a stigma attached unfortunately.
There is so much misinformation! I’m very grateful to have overcome it. 8 years seizure-free now.
Hi there- can you speak louder? I'd love to hear what you are saying but it's such a strain to hear, Cheers, Julie
Finally. I know I am not alone in this. You are where I am right now. 😢
I am trying my best to get anyone and everyone to listen.
I keep getting getting someone to listen.
I have tried to commit suicide, but if it weren't for for knowing Jesus I would have been dead.
I started out with grandma seizures at the very beginning as well 15 years before, but then time passed I had the VNS implant, I thought would help.
Boy was I wrong. Medications have not helped so far. Now I'm to the point where I don't have a home, I want run away and hide from everyone because no one believes me. Now I have lost feeling through out my body I have problems talking and I have moments where I still blackout. People just walk away when I have my seizures though, so I just feel like I am in everyone's way.
I want to help others not myself. I just don't feel like I have been able to do enough for others.
And I miss my daughter. I still love my husband but I know it's over. I will never be able to go home again. 😢
I agree. Doctors also need to do more to have more life saving training and research to save lives.
Thank you ❣️
I’m so sorry!😞 the woundedness I had experienced and how I allowed it to affect and impact my beliefs about myself, the world, God… those were my key. Healing and growing is how I overcame. Jesus is how I learned the truth. Inner healing prayer, learning freedom and walking through the fires of this life without allowing them to shape me negatively all were profound for my life changing direction
I have very similar attacks. Been in and out of hospitals for almost a year now. I just so happen to be looking into different possibilities on what is going on. You couldn't of described it better. How do you get diagnosed and get help? I don't know how much more I can take.
My best friend has this, about 5 seizures a day, PNES has effected her for a year now and the doctors have given her 2 months as of 3 weeks ago, 6 weeks ago she was having 2-3 seizures a day. She has given up on life and she gets scans and they come back negative for any problems. She doesn't want to die, but she has convinced herself death is the only way to stop her suffering and I can't live without her, without her being here with me. I of course like her as more than a friend and she does too but I can't get too close, cause she might die, her seizures are from anywhere 2 to 12 minutes long and she can't take any medicine for it because she has 2 heart attacks that she has to take medicine for and it won't mix without causing more problems
Please anyone, I need help, I can't say I struggle with much myself but all I do is sit here and watch everyone I love die and I hate it. Please get ahold of me, I know I'm young but I'm very mature and I need help because she has no hope...
SpeeDyJr I'm here to help. I'll call her, I'll help. i promise you this.
Christine Mauriello I'm sorry, but we waited too long, she has sadly passed. She had a heart attack and it was too much...
SpeeDyJr I am so sorry for you lose. I'm sorry she wouldn't accept any help or hope. I desperately wish she would have called me dear friend. God's peace be with you
Christine Mauriello it is okay, she had a huge fight with her boyfriend that caused her allot of stress. She said she wanted to die alone. And I left her house and 30 minutes later she was dead
i'm still sorry. i know grief, i lost my brother. I'm here for you Alan
I just got my EEG results back and think I might be experiencing what you do. It started when I was 19 and it's gotten worse as I get older. My body tense up, I can't move, I can't talk and everything goes black before I completely collapse to the ground! My mom and my daughter both has seen me. My worse fear is having an episode while walking down the street to meet my daughter after school or I hit my head on something and not wake up right away. It scares me to death!
I'm here for you and all who suffer, thanks be to God. Almost 1 1/2 years ( plus full year before that) seizure-free life. I pass along everything i was taught, learned, and tools learned. I have never taken money and never will. It's my duty. It's what I've been called to.
if you would like to talk please email me. I'd love to be able to help. drivenbyme.net@gmail.com
Christine Mauriello please help me I commented already
SpeeDyJr please email me a way to reach you. my email is drivenbyme.net@gmail.com
Christine Mauriello I emailed you, please help I'm running on a tight schedule, about 5 weeks to be precise, I will do anything no matter the cost
my heart goes out to you christine. my daughter has had it for 2 years fnd as it is called in england seh is so ill i wish i could have instead of her. good look to you x
If she believes she can recover, with the right tools and aid, i will be a support. Have her think over the answer to those questions and then tell her to make the first step to recover (by contacting me through facebbook.)
My comment is quite late on your video. As an epileptic, I found "seizure pillows" that have saved my life many, many times. They're called Sleep-Safe, Anti-Suffocation, Breathe-zy pillows, something like that. They're designed to have holes around the pillow, so even when you're face down, you can still breathe. There are even mattress toppers created the same way. Maybe you should check those out, if you haven't already. It's absolutely terrifying being so close to death like that, and hate that people have experienced such a thing. Don't know much about PNES, but I hope you're doing well and hopefully, one day research will reach where it should have been.
Thank you so much!! I do appreciate it for those who read this. I have recovered and have been seizure free for almost 6 years! Thank you for those kind words
@@ChristineMauriello That's fantastic, so glad to hear that! I can't even begin to imagine what a relief that must be for you. I hope you're able to stay seizure free, that's such great news.
I was diagnosed with this in August and I've been going through alot of stuff leading up to having been diagnosed. I had reconnected with a friend after years of not remembering who they were and then suddenly getting those memories back, then I fought with another friend id known for a long time she was mad I reached out to said person, only to then have said friend ( the one who I repressed the memory of for 8 years) suddenly block me after I got my diagnosis. Not sure what's going on with her but I suspect something is. But whenever I talked about my memories when I was in the hospital my heart rate shot up past 160 and I'd black out and start having a PNES attack.
Kelly I mentioned this in another comment for you but If you feel inspired to, you can call and we can have a quick call to see if there’s something I can help you with. 407-777-0028 (it’s my business number so please do leave a message if I’m unable to answer)
They started when I hit my head on the ice in January of 2009. Yours sounds similar to mine...
I was 1 year having about 7 seizures a day...bed ridden..it sucked...but I'm not there, but I still have bouts of "withdrawing" from the world...smaller seizures...lost my father 8 months ago... But the seizures started in 2009... Kept going for almost 2 years...full grand mal... Seizures...
Just diagnosed having these PNES seizures now at least once a day no longer able to be alone don't know where to go
I don't know either honestly - I had to take a rest at a rehabilitation center for a bit at one point. There is no shame in this and you are worth the care and help. Please reach out to your community to see where would be a good fit. If you do not have insurance call 411 or call your local community help supports and find who can help you. There are so many people who are helping others these days - just don't quit until you find it. I'll be praying for you.
My Wife suffers from NEAD. She has done since the age of 13. These stopped for many years , but started again after the birth of our Daughter. I would find her passed out on the floors or pavements having just blacked out doing normal day to day things. She was unable to break her fall and as a result could often be found with terrible unsightly scarring to her face. She has also passed out while coming down stairs and broke all fer teeth which needed dental treatment. My wife has had numerous scans and medications, she lost many jobs as did i as i needed to be with her 24/7 as a personal carer. Our UK government decided she did not warreat DLA after her being awarded indefinately. and she had the allowance withdrawn. I was also accused on many occasions of having beaten up my wife. Its been so hard dealing with this. I did return to work once the allowances stopped as we still had to support our family, but often came home to find my wife with further scarring and bleeding or injuries from having fallen as a result of a seizure. On a couple of occasions while my wife was out in town pushing the pram with my daughter,, she has passed out while crossing the street and passer byes have had to intervene to stop my wife and daughter being killed. its now been about 3 yrs since her last episode, but we take nothing for granted and hope it never happens again. .
I help people who have come to a point of willing to do anything, forgive anyone, give up anything to recover. I’m a coach specializing in PNES recovery, if your wife is ready she has to make the first step to reach out for help.
Wow...i experience something very similar. I would like to discuss with you if possible. I am at a loss with everything else and am losing time.
If you have facebook you can message me there or email me me (wednesdays are my days I devote to helping pro bono, so if we can get together sometime in the morning tomorrow? )
I have some non epaleptic siezers and I dont convulse. I go in freeze frame mode. My pain disapers when my chronic pain disorder turns off . My fingers go blue and cant breathe. Go dizzy cant move it makes me tired after so I sleep after. Also it blacks me out when I dont relise it. the doctor wont listen to me and I am already got fibromyalgia,sciatica and trimrialgia neuralgia as it makes it worse. Thats all I know as yet. But epaleptic drugs dont work as im already on some for pain.
Samantha Rowley If you need help in recovering from this people let me know. that's what God's empowered me to do with the experience of my own recovery
Hi. My name is Jamie Cryderman. I'm 37 years old, I found out about PNES only yesterday after my father googled the symptoms that caused my husband and 17 year old daughter to call 911 this past Thursday night. I should tell you first that I have systemic lupus and I have had a full hysterectomy after finding cervical cancer and pelvic floor carcinoma in June of 2014. I am also the wife and mother of four. A son who just graduated high school, a daughter who will start her senior year this month, a ten year old son and a 9 year old daughter, both of who will start fourth grade in a few weeks. That is my nutshell.
Inside of me lies twenty years of 4 MAJOR traumas in my life that I am only now able to realize actually were traumas. I was so afraid to use the letters PTSD because I am a woman who has never been to war or had any history of sexual abuse. However, I have also endured the guilt and shame of not being able to save my mothers life from prescription drug abuse, brought on by what I now know was my mothers own lupus and/or seizure disorder that no specialist in the 80s and 90s could ever explain, and eventual addiction to prescription pain killers. I was 17 when my grandmother and aunt chose to believe the addict part of my mothers brain and not my fathers and my own pleas for their help and support. Both of them were such a huge part of the fabric of who I was and were family I saw every day of my life. When they cut me out of their lives, I was left to watch my mother struggle for almost five years until her death, it nearly ripped my chest open and felt like the world was going to end. I was so stubborn and prideful at 17 that I SWORE I wouldn't ever let anyone hurt me or see me hurt in anyway. I was so focused on college, being a parent and working that I did not know I was traumatized. I swore I would never be like my mother and because of my stubbornness, I almost never take the medication I need for my pain and many times don't even take the medications I need for my lupus related heart issue.
A few years after the death of my mother, one of my very closest friends was abducted and murdered while walking to her car from the bar she worked at in redonda beach ca. Where I lived at the time. Three days after her disappearance, her disconnected foot was found in the snow, at a pull off area in big bear ca. The remainder of her body was found in trash bags, at the bottom of the clearing.
For MONTHS the story was everywhere. I couldn't get away from it. Billboards covering the city were filled with her smiling face and a reward offered for her killer. Again, I did not even think for a second that I would suffer from ptsd.
Last year, my best friend texted me with a very loving text that wasn't cryptic in reading until I learned he put a gun to his head and pulled the trigger only 3 weeks away from receiving his masters degree in engineering from UCLA. The trauma of seeing the aftermath of suicide in his garage the night he died also never registered to me as PTSD because again, I would never want to compare myself to a war veteran who's seen SO much worse than I, so I did what I knew how to do best and that was to stuff it as deep into my soul as possible and continue on as the "strong woman" I thought I was.
Currently, I'm in the center of another trauma.
I have a big family in northeast Ohio where my father is from. My grandma has been showing signs of prescription pain addiction for years now and I was in denial. Also, with four children, it wasn't easy for me to travel back east as often as I once could so it made it easier for me to remain in denial. I flew out on July 25 and returned back after an entire week of mental stress and fear.
My first night home, this past Thursday night, all I can remember is having my two youngest children climb into bed with me to watch marmaduke. I have no memory and no matter how hard I try, I can not recollect anything from the hours of 9:30pm-1:30pm the following day, which was this past Friday.
When I watched your video on PNES, I felt like you were talking about me. Every word you spoke made me feel a little more at peace with the massive chaos going on in my head.
If you have the time, I would so desperately love to speak with you. My phone number is 310-738-4790. Thank you so very much for your videos. I hope you realize what a lifeline they were for me this weekend and I'm sure for many others who are trying to understand their own brains and stressors that cause them to misfire. You were an angel to me this weekend. My only line of clarity, hope and the last bit of faith I had left. I hope to have the chance to connect with you, however if that doesn't happen, please know that you made a massive difference in my life and very possibly, the only reason that I didn't have another seizure over the weekend.
With love and blessings,
Jamie Cryderman ❤️🙏🏼
Sent from my iPhone
I just want you to know I have tried twice to reach you. Please call me again.
I just got diagnosed with NES it's new to me here I just hurd your story Christine I would like to speak sometime
I am on facebook and you can private message me - we can exchange info and schedule a talk. There is so much out there so make sure you put your questions together for me in advance. Thanks!
I was just told I had this and I am leaning alot from you and your videos I just had one today and my husband toke me to the hospital and they just Said its funny that is fake they told me and I dont know what to do.
There is a LOT of hope I and other PNES survivor-turned-warriors can help with. Be encouraged!!
I just had a very bad seizure on October 21st l was conscience from the seizure were they had to call 911 to get me to the emergency room l was in the hospital for 3 days
Oh Charlotte, I’m sorry - they can be frightening. I hope you’re doing ok. If there is one thing I can say is to keep looking for the root - if it’s medical, get help from compassionate knowledgeable doctors and keep going in that direction; if emotional, get help in that by experienced help and keep going in that direction; and same if it’s spiritual. Find the root. Sometimes, often it’s a combo of those but we can only take on one thing at a time. Get support no matter what by people who will love you and are gentle with you. If you need support please reach out! Christine@TransferOutPNES.com
I got psychogenic non epileptic seizuresi collapsed on various doctors surgeons I believe some think it’s attention it’s not they are real. I have cptsd now one dr taken seriously and realises the severity. I don’t shake
My situation more serious as I have spinal fusions. I’ve had one crossing the road. I’m in Uk I want join in your awareness campagne I want hospital doctors involved. I’m worried my fusions stay safe
Please do contact me through Christine@TransferOutPNES.com
Real angels or paramedics? Sry I have PNES and I was just curious. I also use meditation to avoid them.
I was speaking metaphorically, but I do believe in angels and in my heart i know one was a true angel. Within my experience with PNES I have had a lot of spiritual experiences... a lot of darkness but then a lot of hope and faith - That's what has allowed me to be seizure free for almost a year. My faith created the framework for a healthier life.
I'm still having episodes lately and I'm having bad migraines as well.
I’m so sorry Kelly. If you feel inspired to you can call and we can have a quick call to see if there’s something I can help you with. 407-777-0028 (it’s my business number so please do leave a message if I’m unable to answer)
My wife has these. I stay with her twenty four hours a day to help her through her seizures. Her's began a few years after brain surgery to remove a brain tumor. She's had them for 4 years. You are the FIRST person I've seen that shares PNES. Two nights ago, she was released from a major brain hospital in Phoenix after experiencing complete paralysis from the waist down after a seizure. She's home now recovering. Is there any support group for PNES sufferers? If not, we should make one! I would love to talk to you, to share our story in hopes to help anyone else who feels completely alone consumed by PNES. My email is hippfilms (at) gmail.
I'm sorry for you and your wife. I went through my own traumas when they started, but at some point I began to accept them better and became more of an observer and kind of studied what was happening more than experiencing them. It was then that it became obvious how traumatizing it is for those people who are watching you go through it. I try to stress how important it is to try to stick to the oxygen mask policy - "to help others you have to first put the oxygen mask on yourself." Our supporters can fall into the shadows, so I try to pass it along that they are not alone either.
I am so happy you found these vids - yes, there is support out there. The main support I use/have found are in facebook. There are at least 8 I know of. Under PNES, Psychogenic Non Epileptic Seizures, Non Epileptic Seizures, type a couple letters of each to get a full list. Be wary of what you read online, even the DSM is messed up. I am an avid researcher/analyst and I am bordering on shock regularly by what I read. I have to remind myself that my goal is not for people to get the terminology right. To achieve awareness we have to first get to their heart - empathy is the vehicle we need for this change. Education is important but real change comes out of compassion.
I am part of a PNES advocacy with a couple neurologist and specialists. what my purpose has become 1. to share the tools/methods i collected and used in my recovery (because sadly there is no real guide for that,) and 2. to learn how to empower our message by being more conscious and formulaic in our approach. I'm a science teacher (past) geek (current), plus artist and a little bit of mad scientist all working to develop unique strategies. It's a years worth of research, experiments and analysis - I wouldn't post anything until they were refined and proven several times. For now I am using TH-cam and FB but I am desperate to share this globally.
I felt exactly like you did - completely alone and totally clueless. That level of isolation can cause real problems for many people who are already predisposed to other mental health diagnoses. My brother's death made it clear that there is no time to waste - when there is an identified problem the challenges start being identified and solutions created (because it typically requires imagination) and then tested. There is no meds for non-epileptic seizures but there is relief.
Let me know how I can help you both. drivenbyme.net at gmail.
Christine
Christine Mauriello Thank you so much for your reply Christine. When I came across your videos last night, I was both excited and full of sympathy. Excited to know that we can connect to someone who would finally understand our plight, but very sympathetic to you personally, knowing what you attend with.
We are not alone.
I'd like to post some information that I have found here, as it relates to some medical studies being done so others my have that info. I'd also like to email you with our background and more complete story. The snowball of awareness just got bigger by two, adding to the amazing steps you've already taken and plan to take.
While in the hospital this last week, her condition was given a name - PNES. Once I had that little bit, the researcher in me went to work.
I found a program from the University of South Florida by a DR Selim R. Benbadis, MD. Here is a link to that document - hsc.usf.edu/COM/epilepsy/PNESbrochure.pdf
Florida is a bit far for Donna and I, so I looked in our state - Arizona. I found that Arizona State University has performed a study as well, July 2014. From their page - "New research by clinical psychologists from Arizona State University and the United Kingdom has revealed seizures that could be mistaken for epilepsy are linked to feelings of anxiety." A Google search for PNS ASU will likely list this page here - asunews.asu.edu/20140730-nonepileptic-seizures.
I have some strong stills in Web Design and could quickly have an official support website up within the week. I say home with my wife full time, as I said, and have a strong desire to make a lot of noise for PNES now that our demon has a name. I am so tired of the medical establishment at large turning a blind eye. From a Neurologist to me this week at Barrow Neurological Institute - "If something is not physically wrong, we cannot fix it." Even though my wife lay in the bed next to him, unable to move from the waist down, I sort of understood. He was bound by his expertise and the tools available to him. He said that even though a psychiatric professional was needed to help her get well, politics in the state of Arizona have put Mental Health on the back burner. I think it's time to turn up the heat!
***** I am so happy you are joining the the team :-) The people who are supporting us now need a reprieve. No matter what the cause, without backup there is a wearing down - especially with something as misunderstood as PNES. We need a new approach, trying to get people to understand something unseen and something associated to a larger group of misconceptions (like mental health) can feel like swimming against the tide. It becomes an optical illusion, which those who benefit from the misconceptions (and sadly there are many) are not trying to reject all together or embrace either - just enough attention to keep the energy used in the effort to continue to be spent with a return that is sporadic at best. To be honest, it is neither the patients, nor medical communities fault, it is a flaw in the design. Everyone (for the most part) is doing the best they can. The medical community is being stretched to the limit, to much to do and too little time, and the same for patients and families in general. It creates a perfect atmosphere for a offense/defense distraction,.. that turns into our life. Everything is designed this way it seems. Some parts of our life have the ingredient of feeling like we're letting someone down or that someone is letting us down... it will take years to untangle that (if we keep on that same pattern.) I felt the same way you do when I started becoming involved in August, though after months of evaluating a fuller picture from observations I see that the heat is taking a lot of energy and isn't making the change we need. There is a new approach I am working on. I have the parts, just not a way to distribute and not get lost in the sea of search results. There has to be a new way for that too... not sure what that would be (yet.) I appreciate what you sent, I will look more closely at everything this weekend. Also I wanted to say thank you for sympathy - it is hard to see how challenging it appears from the other side of the lens. I am really very grateful for the people and events that I've had happen because of the PNES. Love has been redefined, so has need versus want, the scale of difficulty has been shifted greatly - which in the right light can be appreciated because of how strong it has made me. I can see how that has benefited my kids in the long run. Having perspective of needs vs wants and priorities at the age of 6 and 8 will go far. Actually, one of the things I am most grateful for is that they have seen me work harder than they ever have and see how much I can do with my "limitations." No challenge, no illness, no person and no situation are going to dictate what my limits are - or theirs (as long as I keep up the example.) It took the better part of a year to gain this perspective, and it was the amazing people who committed to helping me get through the hardest time. Your wife sounds like she is a great hands.
Christine Mauriello Hi Christine. Our PNES community website is finally complete. I'd love to invite you for a peek - NonEpileptic.org/
Yes very serious I got 4 more car concussions and Reinaldo failure after 2 days recovering from a episode. 14 years. No life. Tbi car accident caused it. Nobody cares. Waiting to be out of this hell.
There is hope! I know there is hope. I and others have taken the path to search and work towards full recovery until it is done. I’m now almost 6 years seizure free
If you need help I would be happy to tell you some resources- Christine@TransferOutPNES.com
I've been dealing with PNES anxiety attacks for over a decade now. So here comes my 2 cents.
You need to seek the help of a psychiatrist & psychotherapist. If they don't believe you're experiencing PNES, switch doctors! I cannot stress this enough! If you can't build a repore & trust, you're wasting your money & time! "NEXT". KWIM?
The psychiatrist can prescribe you something like clonazepam so that when you feel a PNES coming on, chew up a tablet & wash it down!
My PNES are anxiety induced. I'm also agoraphobic. So my stressors are going out in public alone, people, smells, cold, light, sound. Going to doctor's appointments, Walmart, grocery store, etc. are very difficult for me.
I have a metal key fob on my purse to hold earplugs. I always have earplugs with me at all times! I put them in before getting out of the car.
I also carry a jacket or shawl because I get cold easily & it also serves as a comfort item to squeeze if need be.
These attacks are anxiety driven.
Know your triggers.
When loved ones are involved, explain what a PNES is & what you must do to head them off @ 1st sign. Make it clear you're not faking your seizures ... WHY the hell would anybody want this shit. They are very real & terrifying.
Mine start with a head tick. Then tightening of my neck & chest. The shaking moves to my arms & hands, then my torso, then lastly my legs. If I'm in full body seizure I have rapid eye blinking & severe stuttering. But I'm AWAKE, experiencing everything.
If you're out alone & people ask to help tell them what's happening & to please not call an ambulance as it costs YOU $75.00 for the EMT to show up even if YOU did not call them!
You can ask someone who offers, if you're comfortable with them to please take your cellphone & call "so-n-so" for you. Ask them to sit with you until the seizure begins to subside or your point of contact has shown up.
Enter the incident on your cellphone calendar so you can keep track of them to discuss with your shrink & therapist next time you go.
->Do not
Thank you for letting us benefit from your time with this. I’m so sorry for how you are suffering, yet I’m also thankful that you haven’t let it conquer you. Keep rocking my sister!
@Lisa Chafin Do you take any meds that help with pnes? If so what are they,if you dont mind.
Wow, Im in this situation now. I will keep trying psychs. Its amazing what they don't know, scary, these are our doctors in America