What Causes Psychogenic Non-Epileptic Seizures (PNES/NEAD) and How You Recover
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- www.transferou... One of the big questions about PNES is what causes it to evolve in some and not in others. Well, everyone with PNES has a story. It is clear that there are some life events that we are not emotionally equipped to handle. Learning and applying new processing techniques we can reprogram our brain to adapt to positive interventions and eliminate stress-induced seizures. Some authors/teachers who's perspectives have helped changed my life are Melody Beattie (Co-dependant No More) and Dr. Daniel Amen (Change Your Brain, Change Your Life)... there are countless TED talks too. The point is to search and try out new applications that can help rebuild a better life, one where it's direction and course is not dictated by seizures.
Free PDF for Change Your Brain, Change Your Life: cune3.tripod.com/psychology/amen/amen01.pdf
Link for Co-Dependent No More: Check your library too.
(used copies start at $0.01)
www.amazon.com/...
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It’s been a wonderful video st age 70 nothing has ever expressed in terms of I could understand until now thank you for your love
Mine are triggered by people suddenly raising their voices and fighting...stress, New things...I'm on disability because of it
This sounds like there are triggers tied to experience. The brain is an amazing tool and can be rewired to change. I used to be extremely arachnophobic, truly terrified, but I have not run from spiders in a decade, in fact I'll trap them and take them outside. The brain is moldable. Search Dr. Daniel Amen for more facts on neuroplasticity. I have been seizure-free and that means trigger-free for 2+ years. Lots of work and lots of reward :-)
Absolutely beautiful description, describing what you have been suffering from. Certainly sounds very similar to me. Thank you so much for sharing your story ❤️ 💕 😊
Thank you Lisa! God bless you in your healing journey!
Thanks Christine
I am a religious man. I've studied Revelation for over ten years now. May I saw I believe I've found the way to read Revelation. No exaggeration. Anyone could read it now with a few simple rules. You could read it. Anyone can read it. It surprisingly so simple. It was never hard all . We just never understood. I've been working on this manuscript for all those years. It's written just final editing.
It certainly takes discernment and that took submission to the Lord for me. I read many times prior and just used my own understanding and justifications (which we know we shouldn’t do - Proverbs 3:5-6). God bless
The wife suggested hamburger for lunch. I said I wouldn't mind sausage and biscuits and gravy helper.
I have them cuz of lack of sleep, stress , flashing lights and if someone upsets me. I was told by a social worker I have a head injury cuz my momma had dropped when I was a baby. I had my first seizure at age 13 or 14. I been told I had epilepsy and psuedo seizures.
If they have confirmed on EEG that you have epilepsy then there are helps to control that (people have written me with what has helped them) if not, please make sure that you get it confirmed. God Bless!
I just stsrted getting them....i believe from lack of sleep and alot of stress ....still undergoing alot of test but it has been very depressing not being able to drive
Christine Hodges I'm 14 in a week and I had my first mild breif seizure a few days ago...
Is FND cureable? Are there any patients who need a wheelchair? Could it cause incontinence?
incontinence is typically associated with epilepsy, which can be evaluated and diagnosed with a EEG. There are varying degrees and if someone does not have the resources to wellness, they I would have to say that wheelchairs may be helpful. All this to say that yes, in my personal experience and in working with others, it is possible to overcome PNES. It is so important to find the root source of PNES and address that aggressively. Fight for your life! It's worth it, I can say from the other side!
Statistically I've had so many strokes. I shouldn't be alive,
Praise God you are! He must really need your story to be told
thank you so much. I have between 30-70 seizures per day, each being about 30 seconds. Sometimes I feel so alone with this but after watching this video I cried for a while because people like you make me feel understood and like maybe I can accept this and recover. So thank you so much.
Nico Di Angelo Lover i have about 50-100 mini seizures a day but i also have big ones as well wich can be anything from petite mal to full blown grand mals.
Thank you for your insight. I was crying as I was listening to you because you were describing me. I am 52 years old & have been SUFFERING from localized seizures for 10 years & PNES for over a year. You made me realize why PNES is happening. I was not equipped to deal with death of my loved ones & I have lost 5 important ppl in past few years. My PNES started in a grocery store, the day after I visited my dying sweet uncle. PNES came in waves & lasted over an hour. ER doctors thought I was on drugs because they never seen anything like it. I still have them at least twice weekly. I even faint sometimes & end up in ER .
What has worked for us so far is for him to continuously whisper to me to breath & relax until I stop. The last time in ER, I was unconscious, full of antiseizure meds. My husband says he walked in saw the doctors were standing around baffled cuz I was still having PNES. He did the routine & it stopped, then he had to educate the doctors. I don't remember anything about that day.
I am petrified to go anywhere in case I have a PNES. I am seeing a neurologist, a psychotherapist & a psychologist. I have thought about killing myself just to stop suffering, but I can't do that to my sweet husband. Hope these articles help me.
Thank you again for opening my eyes.
Any support I can offer, please email me. drivenbyme.net@gmail.com
Thank you. You have a heart of gold. 💖💖
I feel the same way
I feel exactly the same
Sounds so painful, God bless you during all of your pain 😒 😢
I started dating a girl a month ago who deals with this. It's been a whole new world to me. Thank you for your insight.
Grounding techniques and CBT (cognitive behavioral therapy) with a certified trauma counselor is a great solution. A Benadryl can ease an episode, but make you sleepy. Nature walks or doing art in nature, even just sitting somewhere lovely helps sooth too. Doctors don't have a clue, because it's not medical and seizure meds ate useless. It's an excessive stress condition. Shaking out the stress is not under our control in PNES, but think of it as a process that will pass. Journaling can help too. Self-compassion and self care are vital to overcome it.
You are right - healing has to happen from open and active wounds in order to recover and a serious need for community support has made all the difference to be free of these for over 3 years!! Thank you for sharing your comment and tools.
I just can’t stand pressure,any type of stress it leads to anxiety and that leads to you know what 😣
There are some great resources to produce inner strength and resilience - if you want, check out the most recent vids. I hope you’re getting well!
Christine you are such an inspiration to me. I suffer from PTSD and PNES due to years of childhood abuse. My psychiatrist has suggested a service dog to try and assist me in life. I feel like such a failure but maybe you are right and there is hope. Thank you
I invite you to find recovery for yourself with me. I don't charge and if you're willing to do some work to grow beyond this, recovery is yours. contact me either through my website drivenbyme(dot)net or message me on FB. I simply pass on the gift I've been given, and ask for nothing in return. i just hope that you can help another one day
I was diagnosed today with PNES after having severe tremors and dissociative fits for months. But after doing an EEG sleep study, an MRI, and a couple of blood tests. It all came back negative, nothing, nothing physical. This has completely fucked with my perception of my own health and mentality. Now i’m going to go to therapy to see what we can do to fix this.
-and damn i also ‘swallow’ my tears, just a reaction from my emotional trauma so hAh. thank you for this vid tho-
That’s the point. The tests mostly come back negative. The doctors find it hard to compute in their own minds. It does not make it not real!
When she said PNES I heard pain in the ass which is what these are. I started having these in November after I was sexually assaulted...
I have the same past, there is recovery from these - it just takes work and support. I am 2 years+ seizure-free, but it takes a strong person to admit the need to change. Even before my sexual attack my identity was flimsy and dependent on variables, not on anything which was fixed (which would have allowed my identity to remain intact no matter what life threw my way.) I offer lots of what I learned of my growth on TH-cam but I also use what I learn to help people professionally. If you are ever interested in that journey, know you have someone who can relate; I have been where you are coming from in more ways that most counselors can and I have hope of change. You can always reach me on facebook or email. drivenbyme.net@gmail.com (it may take 48-72 hours to hear back.)
My daughter started having what was noted as “conversion attacks”, which sounds like the same as PNES as I listened to your video. Unfortunately, they began in middle school which led to her having to drop out. She immediately began psychiatric and psychological intervention, At Stanford ,but a diagnosis didn’t come soon enough which added insult to her condition. That was 10 years ago and she is just now getting the help she needed since then. In between those years she had been diagnosed and treated insufficiently holding her back from the healthy mental developmental activity to become an independent adult. At 25, she is finally getting the attention from medical professionals that are now aware of this disability and ways of treating it. It took a lot of independent research on my part to find someone educated in this area of medicine. I encourage anyone who thinks they may be suffering from this debilitating condition, please do your research and find the right help before it gets worse. My daughter is just now started GED review classes, it’s not easy for her. I don’t mean the learning aspect, it’s fighting the agoraphobia that developed during the 10 years of anxiety depression that preceded her being properly diagnosed and treated. Even though we are only 20 minutes away from Stanford, we couldn’t get anyone to take this seriously enough to accept it as a disability. She managed to get approval for SSDI at 18 after attempts at working failed but is now appealing it after being denied continuation. Please know that all this blah blah is for everyone to understand the horror of living with this especially during those adolescent years that are stressful enough without mental health issues. Thanks for listening and be the “squeaky wheel” and don’t stop until someone hears you!!!
Again I truly count my blessings. I've been saved once from mouth to mouth. That was the NDE while I was out. It was a hard fight to get me breathing on my own again. Now I'm an old guy and am 69". Yeah. I count my blessings. I pray for you in the evening before I go to sleep. You and yours. Have. Good day.
God bless you during your pain and progress 🙏
When you explain things it’s so clear and understanding and full of empathy. Thank you for your video. I have narcissistic parents and growing up was really emotionally hard.
Woundedness is a source of so much pain in our lives and then when we begin to learn how to define everything through that filter... what a mess. There is a large "proverbial" ball of twine to unravel, and the journey is not easy - if you need support through this please contact me through Facebook messenger.
I'm from Hungary. I have PNES about four years. The worst thing in it, that: the doctors (4 or 6) didn't know what is it. First in January diagnosed it a doctor after four years. She helped a lot. Over the years I get only sedative and anxyiolytic pills. Now it's better but not perfect. I have collapse (sometimes twitches too) all time on the street, at home, in my workplace. I started research on the internet, there was only two short hungarian website. I'm sad and angry about it. What can do a person who don't speak English. Now I'm "glad" I'm not alone. Thaks for you guys and thanks for the video! (Sorry for my English!)
God bless you!
I belive you when you say that we don't have the tools to handle our emotions, feelings and everything life are throwing at us. Please exuse the way i write, English are not my common language🥸. I have learnd so much about my situasion from your videos and i am so grateful. Thank you. First you gave me the Toolbox, and the you put in the understanding about what's going on. Then you gave me tools to take a grip and turn something difficult over to something good. I knowe my brain have showed me the red flag many times, but i never did understand what was coming. It's rare to find people who knowes what they are talking about. People who can help because they have acually been RIGHT THERE.
The very best from Northern Norway.
Thank you for this building affirmation and encouragement! God bless You!!
Nurse in Emergency room need to be more EDUCATED on these types of seizures. I find c.b.d.oil helps with these types
Everyone in medicine needs help with compassion- I think patients need to know also that they have no ability to physically help them a great deal of the time when the roots are trauma based. That must leave many of them very frustrated
I'm so sorry didn't imply I never take regular mental breaks. Around Sunday's commonly. Prays and apologies, I got new small bright light. Ya.
Today is the first time in 11 years of typing I can't work on editing the end of the manuscript. It's just too dark. My only room light is the pc and a aa. I've asked for another or 2 from wife. It's frustrating. I have things to do and miles to go befor I sleep.
Hmm didn't I read something for a friend and told her fish oil I believe can reduce the occurrence of f seizures, and read on vagus nerve. Somepressure places. My friend does that.i know all this is kind of different though.
This is so fascinating to me. I have dealt with some pretty severe intense amounts of trauma in my life and also deal with PTSD as a result. I also suffer from seizures both neurological and psychogenic seizures. I have never heard anyone describe this concept as you did, so efficiently. Thank you for sharing your story! You are such an inspiration to me, and you achieved your goal because your sweet story touched me! I couldn't find the links to the books but would love to look into them. Thanks again.
Juliana, thank you. I believe that we can use the pain from the past as a tool to help others, therefore taking the power out of our story (no longer remaining that same victim I once was) by using it for the benefit of others. It's become of life's purpose for me to help others acheive the recovery I have had, and find it for themselves. If there's anything I can do to help you, or even just talk to you, you can search for me on Facebook.
I was diagnosed just last week after a MRI and EEG ruled other things out. I immediately felt embrassed ..thinking the hospital staff thought either I was faking or just overly sensitive.
I really appreciate you saying how stoic you were. I too do not cry in front of people. As a child I learned that weakness was used against you. This diagnosis has obliterated my confidence. I'm at the point I don't want to leave my house. Thank you for your insight.
Oh Barbara I’m so sorry. Believe me, I understand completely. The truth is that emotion IS NOT being weak, it’s a sign of great emotional strength and acuity. It can be used against us when we’re not protected or don’t have safe people around us. Those are all things I’ve learned in this journey these past (almost) 8 years. If you ever need help please do reach out to me. It’s a journey I have tracked and now encourage others in.
I had a dream of the darkness without apparently reason in Revelation.
Thank you so much.........I have just been diagnosed recently.......you are a true gem and this has so helped me atm. :)
I have a site for my blog, etc at TransferOutPNES.com
Psuedoseizures was confirmed in hospital and Epilepsy was also confirmed in hospital in Birmingham. I'm living in Kentucky now. So hopefully when I get EEG done I'll see if my meds need changed or not.
I love the fact you like to help people in a friendly caring way, you've really shown me I'm not alone. 2 days ago I have a linking seizure two one after another on a bus. I ended up getting off miles away from where I was supposed to. Yesterday at my partner's I ended up having 3 . I was videod laughed at and bullied by members of the public .
Your very admirable . I wish people could share this to help many others. Your sensitivity is lovely, it's been a while since hearing such a compassionate lady. Really brings me hope.
Katie, I don’t know why I didn’t reply before but I am so sorry that you have endured this bullying. God bless you. I know it’s been 2 years now - how are you doing now?
Thank you for your every thought. . It helps remind me to do the task I believe the Lord asked me to complete. I appreciate your prayers as well.
I got miss diagnosed with epilepsy 3 years ago after completing EMT school. Now with the new diagnosis of PNES, i will be starting therapy soon. I have high hopes to finish school and beat this thing.
That is an awesome attitude, and without that it’s impossible. We must stand on truth that we are going to overcome
What I have found helpful to me is my hysband keep GENTLY whispering in my ear, "Just Breath.. it's ok"... as he is touching my hair. He calmes me down. Somehow my brain gets to focus on his loving voice & not what else is going on around me. He even had to explain this treatment to the ER doctors after they had pumped me full of anti-seizure drugs with no affect, he rushed in & did this majic trick. I don't remember any of it, but apparently the room was full of 3 doctors & nurses whom were all baffled.
I think finding what comforts & calms each person down is important.
That is fantastic! I’m so happy that the medical professionals that were treating you got to see this as well. You are so blessed
Much appreciated. Being from CA, the earthquake analogy made so much sense. There are times when I feel perfectly fine and at rest and these come. Similar to earthquakes releasing.
I have PTSD, Dissociative Disorder, and Schizophrenia. I am very stressed and have been getting seizures, but my eeg and mri came back normal. I believe I have PNES because it's the only thing that makes sense, because I have all of these Phycological problems. I don't have anything wrong neurologically, because tests come back normal. Who diagnoses you with PNES then? Since the neurologist doesn't know anything about PNES.
I’m sorry Heather- that is frustrating. Personally, I was diagnosed in the hospital by the neurologist, so they do have the ability to.
There is help for this and some of the other concerns you mentioned. For me, I had my chemical imbalance corrected through the same methods used to get rid of the seizures. There are many effective aids, and some will help to a measure and then others (like the ones I practiced and still practice) make a greater difference. It’s all up to you as the individual. I’d be happy to talk to you about it if you’re looking for help. Just go to TransferOutPNES.com and click on Contact.
Christine Mauriello thank you
Failure that's exactly how I feel... I failed as a strong woman because I only have my A.A Degree and what example does that set for my daughters, failed as a daughter because I'm not successful enough to help her, failed as a Christian had my girls and their father and I are not married although I've known him and his family since I was 13...I feel like I failed as a mother they wanting to do more just fail, burden to my Mom is apart of my vocabulary when I only had epileptic seizures now I have both I just want to do better.... thanks again for sharing this!😇😇😇
De'Onna Cook , you are not a failure you made some mistakes but you are human and you have an A.A defree some people don't get that far. You have not failed because you have wonderful kids and you will teach them better and want better for them. Remember God loves you and is always with you. He has forgiving you for whatever sins you have done and now you can move forward. The fact that you care about this things let's me know what a caring person you are. Your children are blessed to have you as a mother. Move forward never backwards. If you want to continue your education, do it like me I took one class one semester towards my bachelor's and once you see how you handle it add more. You can do anything you set your mind too..god bless prayers
De'Onna Cook , remember you can't help your seizures but God can heal you
De'Onna Cook . You are not a failure. Read some books by Eckhard Tolle. Don't spend your life trying to be what you or others think you should. You have one life, beautiful children. You are only a failure in your own eyes. You need to change your thought processes or you will be unhappy You have 1 life. You are a beautiful , unique , special person. Treasure the moment. Success isn't all about qualifications. Perfect is only another person's view of perfect. Be caring, beautiful you. You will see change in so many things. Anyone who labels you a failure needs to look at their own thoughts or lack of them. You are you. Don't ever change lovely. I have these seizures and FND but you know what , weirdly I'm a better person for it. I can empathise and I've learnt many things. Big hug brave last. I think you are wonderful x
We can focus on our regrets or our blessings. And it seems that you have people that care about you. There's no such thing as a failed Christian Gods mercy is new everyday and if you have life you have a new day to seek him.
Jacky Eastwood my God, don’t tell people to read books by a kooky false teacher. Read the Bible, SMH.
Thank You
Thank you so much sharing, so helpful
You are so welcome Katie!!
I've had pnes since 6th grade I had them about 10 times or more a day... They went away in 7th grade. I am now in 8th and they have come back
If you have Facebook, send me a private message. I'll help as much as i can
I can tell my stationary bike makes me sleep more soundly. I'm now 70 and don't feel it. I feel good. I just don't run so fast.. ha. I used to run 5miles in. College. For an old guy. I'm doing great consider all the strokes I've had. You'd never know I've had any of them. Count my b
Essings
Treatment Issues
“Somatoform disorders are very difficult to treat because as soon as you extinguish one symptom another one pops up. These disorders consume a lot of time, money and tend to invoke a tremendous amount of frustration on the part of the healthcare professionals working with this population,” said Susan Kelley, Ph.D., Professor of Behavioral Health at the University of South Florida, Tampa, and psychotherapist in private practice. Kelley herself, has been able to circumvent this frustration as she has adopted a trauma-focused clinical approach, which not only serves her well as a clinician, but also helps her patients with PNES to overcome their seizures. “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.” She postulates that when a person experiences trauma such as physical abuse, sexual abuse, witness to violence, his/her body can absorb this trauma. Therefore, a seizure is the body’s way of expressing what the mind and mouth can not. What Kelley has found to be the most effective treatment for PNES is a therapeutic technique called Eye Movement Desensitization and Reprocessing (EMDR).
Thank you for this. I have found such simple tools as used in the 12 steps of AA helpful - even critical in my own personal recovery
Don't know if I mentioned but I thought I read that fish oil slowly may cause people have less seizures. But check that I might have misread that.
I have had NEAD for 4 years I was getting over a 1000 seizures a month now 9 a month it is hard work but one thing I found works is not be a prisoner in your house yep I cannot work yet as I have avoided triggers to reduce my seizures try and do something you like art painting photography anything at all go out try to socialise use sunglasses earplugs night driving glasses do not set goals fail them and it's worse but try to do things everyday worst part is boredom this gets you to think which can bring on stress which brings on seizures so try to keep occupied
Thank you Christine. First let me say I’m sorry you’ve gone through this and perhaps soon are. I tend to look at life situations as growth opportunities and desire to reach out to anyone who may benefit from what I’ve endured.
I recently had a mTBI/ serious concussion and three months in am still working through PCS (post concussion syndrome). This has been a painful and at times, yes a frightening recovery process. Due to multiple concussions through the years both my concussion specialist and neurologist have been challenged by the symptoms/ issues presented by my injury. From thorough review of my history we’ve been realizing I’ve exhibited different classic epilepsy symptoms building from each concussion. The symptoms are broad, but one thing I know is that there’s a psychogenic non epileptic seizure component (PNES).
The PNES seizures started recently and can be linked to PTSD, extreme stress, sleep disorder, and at times poor nutrition or improper nutrition for my own needs. Like you I was unequipped to deal with some symptoms I experienced in years past and finally sought professionals who could help further my resilience and coping mechanisms.
As you so openly mentioned, the first step is difficult due to social stigmas, denial, and for me just not wanting to go that route. But after years of frustration and regularly asking myself what’s wrong with me I gathered the confidence to go that route. I found the process beneficial and am using those coping mechanisms now in my journey of recovery.
So to anyone suffering from the things you so openly talked about, I can tell you from my experience, let others help you, seek professional help, and swallow your pride if that’s what it takes. I believe you’ll be glad you did.
Correction: “..perhaps you still are.” Psychotherapy was the “route” I took after prior brain trauma to help cope and recognize hidden factors at play. Many of my symptoms we the same as those mentioned by Christine. Thank you again a Christine for you open, honest video; well done!
Tim how well you spoke to the struggle and the route we need to get to in order to overcome. I’ve needed to change a lot of everything really to get to where I’m at now (and I’m no where near complete) but as a result I now live in a strong understanding of identity and have now been seizure free for almost 4 years. Thank you so much for your reply and contribution!
And thank you prayers for me as well. I don't watch news and talking heads..it only gets you aggravated and you can't doanything anywhere, let others handle it. We just. Pray and peace,
I have PNES and TLE Temporal lobe epilepsy, I will be out of work for a year come this July. I am FORTUNATE that i will be starting psychotherapy in the next 4 months. Thank you for your story and bravery.
Ps I've read some easy yoga for 12 weeks were slowly helping wind down . Sorry you might get tired though. That last part was a joke.
Won't finish manuscript this year hoping by June.c magor crash. 8oo gigs of genealogy to recover in special adapter. Always apprecte prayers and me to u and your too
Ps after doing like this from yhe last election..I sleep better. And feel more smooth than trouble trouble in your mind hanging around, it's great.
Thank you for doing this video. It has helped me an I like the idea of journaling. Thanks.
Richard, how has the journaling gone? I hope your doing well!!
You’ve just helped me ...thank you
What if all my attacks happen when I'm having POSITIVE emotions? Watching a beautiful dance performance, winning a contest, whatching movies I love (non-violent) etc... ?
My mental health it's really good, I'm rarely stressed or in a bad place but I still get the attacks ☹️
Poeple tell me I need to get over some trauma, but I don't even know what trauma are they talking about... 😩
There are more answers to the why than that... If you would like to connect and I could share some other resources you can either go to my website TransferOutPNES.com or call 407-777-0028
I was wondering about that too, i recently hugged my friend and that was so heart warming but i could sense my breathing was becoming higher but was able to stop it though
Thank you. Let me re establish some things. Take a goo while . Prayers for you and yours,
We seemed to keep walking our intended paths down the road. It was many moon passed and one day I was walking the road Gain and a man was going the same day. I said I know you. We talked and he had to go on his way. Then I had become old then.
I understand more than you know. Thank you so much!
Thank you so much for this video!!!
you're welcome! please ask anything i didnt cover. i'm here to give you hope of a seizure-free life
Thank you, Christine! Knowledge is power. Its not easy to share these things. You're very courageous. I try and give people hope too. I've been having panic attacks for 6 years but had one on Friday after an argument with my husband that resembled a seizure. They last 10-15 minutes. I scream the entire time, over and over. This time my arms, hands and face contorted. It was terrifying. I've just finished watching a Q&A with Dr's from Stanford explaining the condition. I ticked almost every box. I'm making a Dr's appointment tomorrow. I've been to therapy, taken the CBT course. I'll go through my CBT binder and refresh myself and I'd like to see a psychiatrist at this point. And perhaps a marriage counselor...
It’s so good to advocate for yourself. EEGs are the gold standard to rule out epilepsy. And psychiatrist are good if you need medication or a diagnosis - just be aware that there is no medication to recover - this is something you need to do, so I’m proud of you for recognizing marital counseling. Imago marriage counseling was the most effective when I was married, and I highly recommend it to anyone. It’s not just talking it learning to listen, and process
Mine started about 5 months after i lost my mother to cancer. She was only 55 and she had 4 months from diagnosis to the day she passed away.
Oh Brianna, I am so sorry for this loss. We all need to find others to help us walk through some of our tender times and held lift us up under the weight of it. I offer coaching and know there are many others (pastors, grief counselors to help you get through any grief or other things that linger). If I can be of help to you please reach out to me. Christine.Mauriello32@gmail.com
I ran I was about to ask you to send prayers thisway . Thank you again so much.
That was just a dream. Hope all stil having good Christmas.
When there is no solution to your traumas you can cry, argue, but there is no solution you are hitting a brick wall . You can be sick and doctors agree that you are sick with a disease but the CDC and insurance company’s have decided that you have received the allowed treatment even though your doctor wants you to have more medication. So you go from doctor to doctor who don’t except insurance because insurance companies will try to take away their license to be a doctor so you pay and get the medication and are cured .
I have a book i recently published. In this book I share what I needed to heal. I’m seizure free for 9 years now. It was not through a doctor, because they didn’t know- insurance or not. If you want to take your own journey, and want to learn (outside of what I have already freely shared on TH-cam), it’s called Choosing the Unfinished Bridge, by Christine Miller. It can be found on Amazon in ebook or paperback and by mid-September it should be available on audiobook. I am also working to get it into libraries and on library apps.
… I did find my solution and deeply desire to share this hope I’ve found and life freely in.
I had no choice, I was in some really desperate circumstances and I couldn’t do anything but focus on my own survival. During that time some things happened and I wasn’t able to be there and I couldn’t help someone really close to me during a difficult situation. It wasn’t handled the way it should’ve been, and I was talking to my therapist about it. I started crying and it got really intense. The next thing I knew I woke up in an ambulance on my way to the hospital.
I’m sorry for that! It’s really difficult but I wonder if you processed that yet? Did you forgive yourself? Did you heal? Did you come to any new conclusions? I had some pretty uncomfortable circumstances too (I’m downplaying it). I had to heal. Grieve. Move forward with new information in my heart (disregarding and disposing of the old unhelpful or untrue stuff). I hope you find healing and journey through in this with truth and healing! Praying for you!
Good morning I hope you're doing well i don't know how I found you because its may 2023 but im happy I did i have been on this journey since 2005 and I have seen so many doctors had EEG AND MRI its frustrating because they say they can't find a reason. But my mom always believed it was stress i take so much medicine its something I don't like. But you said not having the tools to deal with the situation at that time for the first time in such a long time I believe they is hope thank you very much be well
I hope you have found some right paths- if you haven’t yet, please do reach out!!
Would you send up some prayers . After 10 years I've finished my Revelation manuscript. Juswt a couple of hours are relooking some wording I'd like to review, I've been praying about some other decisions mainly. I'm afraid I'm going to loose you. System failing
Feel free to email me. I’m not sure what you mean about loosing me. I certainly am going to pray for God’s wisdom over you in your pursuit 🙂 My email is christine@transferoutPNES.com
I have had dreams that of what happened. 911 before it occurred, Fulashima ..something woke me up and over. In Japan it was on edge about to happen. A plane wreck that killed a relatives daughter and for days befor I kept telling my family to be. Careful. Something was going to happen.
I’m so sorry - that sounds very terrible
Again. Thank you. Just what you said. Good stuff👍👍
So grateful for your kind words, Roger.
My son passed in 2012 at 11months, I developed seizures at his hospital bed side in August 2011. Sep 7, 2012 he passed away, and I had to continue living without him. My PNES continued I have had over 43 seizures and many injuries since then. Although I'm not close to over my grief, my seizures stopped abruptly and for good having my last one Jan. 2016. I'm so grateful but it is incredibly hard everyday still. And now my seizures that were like my sign to those who didn't know i was messed up. Now trying to explain my rough past and find understanding of the struggles of PNES and why I spent 4years not driving or going out in my mom's attic is never understood or believed half the time.
Michelle thank you for sharing your story - our stories are important and I’m so sorry for what happened in your life. That must be incredibly difficult. So proud of you for all the work that must have gone into the seizures stopping, but you’re right- they work doesn’t end there. Be blessed ❤️
Hello I just want to know how your seizures's stopped? I am sorry about your lose and Hope that you will recover well! Thank you for sharing!
Thank you sweetheart I appreciate this video I've been going through seizures for 4 years and hopefully this will help me I'm going to take all your advice and follow this
That is so kind! There are more resources on my website too: TransferOutCoaching.com
Learned more from this vid than 20 docters my son been going thru this for over a year started when he was 22 and still cant get it under controll
I’m sorry John. What I can do is encourage you that if your son has a will to overcome and really truly believes that it’s possible (and I’m just one of many people who prove it can be done) he can go far. In my TH-cam channel of hope I educate in order to fuel the reward of others recovery and post-PNES story, but I do have a site for additional and more hands-on aid. My website is TransferOutPNES.com. I mainly work with individuals who have had a hard time in life and need a little encouragement and direction from someone who has already been there. It’s a peer coaching technique, though I have been trained and continue education in professional coaching as well.
Hey thanks. It's really helpful listening to this info. It's not like a documentary where there's all debates. It's better too without all the bells and whistles of the documentaries with the music trying to enhance the "point" of the documentaries. There are several points here, and trust me, I pulled out the journal to take some brief notes. Thanks again.
I’m so happy! God bless your journey!!!
Thankyou for this. I knew that my seizures were stress related because they started after a big shock following a miscarriage. Pshyc meds did not work for me. I do find releif with medical cannabis. It helps to keep anxiety and stress levels lower and helps me to sleep better.
I am glad you found a coping tool to help you. I want to give you hope and encouragement- Know that healing from those causes and becoming completely seizure-free is possible and available 😊
I had a very unusual dream last night about 3 30 in the morning. I was just a common man in the old dusty days of some place and I passed a fellow in the dirt road. He seemed to have been a sailor of simple dress. He asked if he could have a bit of my large piece of bread, I said I would gladly some for a fair price. He searched and found no money in his pockets, I said that's ok and just gave him some anyway.
Very interesting
wow this is a revelation ...i have a relative that i believe has PNES -- we are in Phoenix AZ is there a good doctor for this diagnosis?
I’m so thankful you found help by this. The standard test to confirm it’s not epilepsy is an EEG. It won’t tell you the cause but I can tell you from my experience that food allergies, past trauma or unhealthy upbringings, hidden medical causes or neglecting to take care of realized medical conditions have all pointed to the cause of what I’ve been referring to as a Red Flag Disorder. It’s only a symptom- not the origin
It had been many years by then and I was going some where walking again and I saw a man. The same man. I said it's my friend,! I I wrapped my arms around his shoulders and began to cry and cry. I was so tired I could feel it. I just cried and cried. I'm sorry things seemed to have got parts shuffled in this.
I’m sorry Debbi - that must have been so hard
My daughter is just starting her journey to recovery. Im glad you are doing these videos, doesn't seem to be much support on fb or anywhere. So thanks. Sooo, I'm thinking my daughter should maybe stop in the moment when shes feeling an intense emotion, feel it breathe & let it go. & write about how it made her feel, journaling.
+Elizabeth Parish Farnsworth Journaling is an excellent way of tracking what's going on at the time of seizures. I would spend time after each seizure going through what was happening in life at that moment, with whom.... a who, what, where, why, when, how approach. I didn't have to think on it too long, eventually the patterns would show themselves. A key element, and this had to come from within, was asking myself what part did I play in these patterns? Why did I do... blank? What belief did I have that supported my reason to do...blank? Where did that belief come from? Was is healthy to continue to hold that belief, or did I need to evolve? The format helped see what was not so obvious to me on the surface. I have a book I'm writing about the steps to recovery, my goal is to finish the first draft by the 22nd. I offer my support to anyone looking, you can find me on FB or email me with any questions. That's my whole purpose right now, helping people know they're not alone and helping light a more direct path for healing, for those brave enough to try. Drivenbyme.net@gmail.com
I’ve been struggling with PNES since I was 15 at first I was stolid I was faking it for 5 years I was ignored every time I had an episode and I was finally taken serious by a support staff that works with adults who have disabilities and got a confirmed diagnosis of pnes but I still have to fight this alone listening to your video helped me to understand it better so maybe I can educate my peers
Yes! Educating others in non confrontational ways gets through so much more and with greater impact. Thank you for your feedback!
What do they look like? I've had 2 drs tell me that they're "tremors" and I need to see a psychiatrist to get anti-anxiety meds. My primary Dr says they absolutely are not tremors.
Sorry for the delay! Many doctors who haven’t specialized in PNES/NEAD are not refined to see the difference and are not always (commonly) aware that there are medical causes possible (like food allergies, celiac, mold, and other non psychological causes. That isn’t to say that there isn’t a psychological cause as well - I know people who have both, psychological only and medical only. Get a good second opinion or third until you feel confident that the doctor is experienced with your needs and not just speaking from hypotheticals. You’re life is worth the extra effort to find a specialist and then go based off of their expertise. Neurologists are the best bet but again only if they say they specialize in PNES/NEAD - otherwise you could have an experience where I did, where you’re given no hope of recovery - in fact, told there is no cure or recovery….I’m 8 years seizure free because I didn’t listen. Sending you hope and peace and love, in Him!
Non epileptic seizures can cause more seizures and anoxic reflex seizures may cause seizures too then it become neurocardiogenic syncope of more blackouts.
It’s scary but God knows it took that for me to wake up and take back my life
I need help with my daughter who is only 12 years old it’s so sad at first I thought she had ticks but I don’t know I think it’s apart of stress pressure mourn from her dad poor baby I try to stay strong and supportive however at times I want to go in the corner and cry today was really hard.. for her I applied so many hot towels to her neck and shoulders because she had all these involuntary muscle movements with her neck and arms and shoulder at times her feet it went on for two hours.. this time I recorded it for the doctor I was on google and search and it lead me here which maybe her case I had to put garlic to my baby nose and have her eat a garlic clove to get her to relax and come to.. I really don’t know what to do o give her Benadryl Motrin anything calm calm her so scary for her .. I’m going to bring this to her doctor attention as well
I’m so sorry Ruth. It’s heartbreaking to feel so helpless. I do have a coaching company with coaches who have had PNES and help people journey through it. Feel free to connect. Personally I have clients who are 12, 15, and 16 who have overcome/are overcoming their challenges. There is hope!! Christine@TransferOutPnes.com
I think my father have this..
Thanks for giving me knowledge ..
How is your father doing, Shey?
Mine are caused by being severely Tired.
That is awesome that you've identified your trigger! Lack of sleep combined with excessive caffeine was one of mine - stress-filled/causing people were another. I am able to have both in my life, when necessary, and still be seizure-free. Once I found the root cause, forgave and healed... the rest is TH-cam history ;-)
I have a theory that narcoleptic cateplexy and PNES are related in some way.
Thank you so, so much for sharing your story with, humility, and a willingness to inspire others to reach for that new chapter of there lives. My daughter has just had only two events and has been diagnosed with (PNES). I will share your video with her today. God bless you! You have made me feel so hopeful.
Bless you! Ironically, my story led me into chaplaincy as part of restoration ministry that I do (don't know if your name is to indicate that you are too). I also have restorative PTSD and PNES coaching through WhiteStonePros.com and through TransferOutPNES.com.
@@ChristineMauriello Hi, Christine. Yes I worked as Newark, NJ Police Dept Chaplain for 18 years and just retired last January. I have shared your videos with my Heather. Thanks again.
Thanks for sharing thus is very helpful
Was diagnosed today with PNES, mine kick off when stressed and people knocking on door,
So sorry! There are answers to the why beyond our triggers. It’s like Alice in Wonderland- where do they all lead. I hope you the very best and encourage you that you get connected with support and supportive people. If I can be of help please don’t hesitate to reach out for support. TransferOut.org
I would love to talking or chat with you my life is a similar story and would like to know how you got the help you needed. thank you for sharing christin McBurnett
If you don't have facebook messenger you can email me. drivenbyme.net@gmail.com
Hi. CHristine, I was saying prayers for. You about three this morning, You are on my prayer list.
Thank you Debbi
Do these ever end? My wife was diagnosed with PNES 3 weeks ago after passing out which changed over time to seizure like events.
I’m so sorry! It’s such a scary and frustrating experience. I can say yes, they can end. It will take support. First you will have to get to the root of the seizures… are they an allergic reaction to a food, it’s it caused by unhealthy things planted in our life when we were young, is there a hidden medical cause (like mold or something impacting her). First you have to find the root, then you can begin healing with the right resources and help. If you have more questions please feel free to call. 407-777-0028. By the way, I’ve been seizure free since 7/2015!
@@ChristineMauriello the neurologist says her PNES is caused by trauma from her past relationship as well as a few other factors, and that she’ll need intense therapy and hypnosis to (hopefully) stop the events from happening but yelling, arguing, our crazy 3 year old who doesn’t listen %99.99 of the time, and stress are all triggers to her ptsd.
I’m really happy that you’ve been seizure free, it really gives me hope 🙏
I have had two non epileptic seizures that have happened seemingly without a cause. This video made me look at them in a new way.
It's Just Me If there is anything I can help you with please don't hestitate to ask. Been seizure-free living now 2 - 1/2 yrs
I have non epileptic seizures do to past head trauma.
I’m so sorry! Have they ever done a SPECT scan to see where your brain is most impacted?
@@ChristineMauriello I'm having trouble even getting a Doctor to support me. Basically diagnosed me and said good luck. I know it sounds like I'm making up but a very true story.
No, it’s the common story. I believe you.
If you need support, please reach out to me Christine@TransferOutPNES.com
I am being informed I have this however my episodes only happen right around my period and it’s not seizure like. I become very groggy, hard to wake up, complain of neck pain and have horrible night sweats
Does this sound like pnes? I have also been diagnosed with POTS so I am thinking it’s all from that more so
My testing came back non epilepsy but I did pass out and become unresponsive when they did the lasers on me
Hello! There are more than one diagnosis that appear like PNES. You’re right that sometimes people are misdiagnosed (since PNES has to do with a psychological cause). I’m curious if they did a full hormone check? Keep being your own advocate. Don’t back down but don’t lose your cool 😎 it’s a journey to get proper diagnosis. Don’t give up hope, and keep following your gut!!
@@ChristineMauriello they have not done a full hormonal check which I find odd. Only checked to see if I was starting menopause early but those realist came back normal
Hope you have wonderful goodies planned for your and all for Christmas.
Have a beautiful time with your families and friends everyone! Thank you Debbi
My pad failing I just enjoyed your comments. Prayers,
Thank you! Prayers to you as well
❤❤❤
Thinking of you with prayers. System failing.
With prayer and faith we can REBOOT!!
I've had several strokes, one I couldn't walk. Just only barely crawl with legs trembling, another I couldn't understand English. Another my right arm was gimp. Another I lost vision in half right eve, At one point I couldn't read. And another's I call popcorns because they seemed nothings to the big ones, Now I can walk talk move converse just like none of them happened, yeah coconut. Oil and fish oil work. I'm living proof these work. And you can be sure I thank my blessings.
Thank u Christine.
Thank you, I was just about to yesterday to send some prayers, I'm so. Lose to finishing this editing. I know I'm racing the clock to when. Publishers will accept manuscripts. Thingggs to go. Thank you. I don't know why u sent it but I really needed it to the day almost. Prayers to u and yours. U helped renew my efforts.
Love you and all yours.
It's in story form. You hopefully get lost in the conversational story and don't realize your not learning Revelation. The dark characters hair like women's hair. Dark skies red seas the final war and even survivors mentioned in Revelation. I've tried to cover it all. In depth and scriptural with an interesting story. We ll see.
Mine is conflicting instructions or other sever frustration. It's like a sensory overload mixed with attempting to repress anger and I short circuit.
Other times it's an emotional growth (level up) and I have a major issue a day later (this has happened 3 times).
I have had 2 sever head injuries andn8 other concussions. So I'm up to 10 TBIs plus sever psychological abuse from age 6-18 when I left home but my abusers are still in my life.
I've been working with a neuropsychologist for 9 years (since my suicide attempt at 16). . .