Non Epileptic Seizures | Conversion Disorder | PNES | About Me
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- Опубликовано: 15 окт 2024
- In this video I explain my experience with non epileptic seizures. I have had them for almost 20 years, since I was 18.
I use this channel to not just talk about hair but the many seasons in my life that have taught me self love and compassion.
I call the conditions I have "Invisibles" because you can't see them from the outside. If you struggle with chronic illness know you're not alone and that self love and compassion can make the journey less painful.
Let me know in the comments if you struggle with chronic illness or know someone who does.
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My best friend came home from the hospital with a diagnosis today. They have been struggling with this since they were a small child and they are 34 years old. It feels amazing to finally know what is happening to them
I personally have fibromyalgia, too, so I understand that struggle
Recently diagnosed. Thank you. My symptoms are speech slur/mass confusion surrounding speech, right side paralysis. No Epilepsy though. I’ve had this since I was 5, never knew what it was. No doctor could explain or figure it out. I will say thank you to my PNES because after going to the hospital after the first one ever, it uncovered a rare heart disorder. Take the bad with the good I suppose
this is the first community ive found who talks about this. Thank you. I want to find a community that can talk together about thier PNES and this comment section really helps. I've had this for a year and honestly it is very painful and hard for people to usually understand.
Hey, there are online forums that are associated with mental health organisations, where the forums are for people diagnosed with disorders like this and they are monitored by health professionals, it might be something that could be of help to you. I was directed to FND action on facebook by my counsellor, you could give that a try? I haven't used it yet, as I'm not ready but everyone is on their own journey with this, so I thought I would mention it :) take care, hope you are doing well
Dear Nina, thank you so much for sharing your story! I hope you know how amazing you are. I had a PNES episode just lask week at the hospital during a minor surgery on local anesthaesia and it really shook me because I was so scared it would ruin the surgery. I've had them for a couple of years now, mainly triggered by pain and caffeine. This is the first time I'm really exploring a community of others with PNES. Your story has helped me feel much more validated..and I can see how chronic illnesses can also be associated with this, I myself have lupus and chronic kidney disease. Sending you lots of love!
I’ve never met or spoken to someone else who suffers from this. I’m really struggling with my ptsd and my PNES , even with meds and doc help, they hurt so bad, and I just want to be able to know how to cope and what works for you. Thank you for this video
Madison Leamman Hi Madison thanks so much for watching! I’m sorry to hear about your similar conditions. One day at a time and in this video ruclips.net/video/kIPZ8BFj7k4/видео.html I talk about what helps me. Sending you compassion 🦋
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I was diagnosed with pnes 2 weeks ago. Thank you for sharing your story.
Thank you, thank you, thank you. I was recently just diagnosed with PNES and Conversion Syndrome. Your symptoms and when you talked about the headache, aura you feel before an episode is EXACTLY what happens to me as well and the cold feet! Thank you for helping me on this journey to find comfort that I am not alone and that other people in this world are struggling with this as well. Never in a million years did I think I would have a disorder that nurses and doctors no very little about or have no Idea what I am talking about. Thank you, you beautiful human
Madelynn you’re so welcome! I’m so glad you know you’re not alone! There’s nothing like having people who “get you” and validate your struggle. I appreciate you watching and taking the time to comment, your patience with my reply and your kind words. Hope you’ve been giving yourself compassion since your comment!🥰
I have fibromyalgia and pnes too! I’ve decided today that I’m going to start sharing my story of RUclips. Thank you for being so open and honest about your journey love 🫶🏻
My son has PNES. He is currently in a psychiatric hospital because of an ER Dr who sent him there. Not something I ever imagined would happen. Scary to think people can send you to a psych ward for pretty much anything. Thanks for sharing.
Carla Ferrier oh my Carla, so sorry to hear that! How long does he need to stay there? Thank you for watching and leaving a comment 🦋
@@NaturallyGraysful sorry for the delay getting back to you. Thankfully he was only there 36 hrs. My son had "cut" earlier in the day but it was barely noticable and he hadn't done that for about 8 mos, but because he verbalized it the ER doc labeled him suicidal.
@@carlaferrier2967 No worries Carla 😉
I see but I wish they had a place for people who need support but not as severe because the psych ward can be traumatizing and may stop people from asking for help because of the environment.
Thank you for sharing! Just found this video. I’m currently crying 😭😭 nobody seems to understand me, thank you, THANK YOU! 👏🏽💕
I’m not sure why this year-old video came up in my algorithm, but I’m glad it did because you are lovely, and this is informative.
I've had PNES since 2014 and I'm so surprised at how many others struggle with this condition. It's so interesting to know other peoples triggers and their own methods of either treatment or just how to cope. I'm glad you are able to talk about it and give insight to those who know a loved one with PNES.
Thank you for sharing so eloquently! If you haven’t already, please look up FND (functional neurological disorder). PNES is one of the common symptoms.
Than you 🦋! I have heard of FND and will look more into it. I appreciate you taking time to comment.
Good job
FND is the new term for conversion disorder
@@victoriazona4722 it’s true, conversion disorder is an outdated term for it. I had no idea when I was first diagnosed. I could hardly find any info really until someone told me to look up FND and that’s when I got flooded with info on it.
I was just diagnosed with PNES. Thank you for sharing your story.
You’re most welcome Debbie! How have you been coping?
Same here it took two years to finally find out what was going on was great hope. Working with a therapist.
Thank you for posting your experience!
your comment means so much Dhana thanks for taking the time to watch and comment!
My daughter is 15 it’s new and I’m researching I’m sooo sorryyy this is extremely hard !!! Praying for you and your family
My grandson too he is 15
Thanks for sharing! I’m being tested for this, and had to call 911 over a year ago, and they also thought I checked out fine, thought I had a panic attack, and it’s exhausting to explain something is happening but doctors saying nothing is wrong.
It really is exhausting! Sorry to hear that happened to you. Have you had more recently?
as someone who has had panic attacks since I was 15 and developed PNES at 20 and got diagnosed with it officially very recently, it was nice to hear you talk about how they are 2 very different things. PNES is much more of a physical time for me and feels much more out of my control then panic atracks, where I feel like I can eventually calm down. as PNES involves disassociation, its hard for me to really even get a since of whats fully going on in my body. Thank you for talking about your experience, I've been feeling quite alone.
Thanks for sharing... I also have fibro, PTSD and PNES. I did feel along for a while but my husband is a great help.
Melissa T Hi fellow pnes warrior💪🏽 great to know we aren’t alone and whT a blessing to have supportive hubbies!
Thank you for sharing. I have been dealing with PNES for almost 4 years now.
You are a very good speaker. I wish you could teach more about it on TED talks or others. Thanks for sharing and for taking the time to explaining us about PNES.
So much love to you!💙 I hope you're doing well and can eventually get through this. I've been struggling with it for the last 4 years but am slowly but surely navigating through it and recovering. The toll these seizures can take on you is immense, and I can't imagine having to do this while raising a child. That is some serious strength!
Thank you thank you thank you for this video. I started having seizures a month ago when my Grandpa passed away. The doctors haven’t been able to do an EEG yet but they thing they are non-epileptic. It brings a lot of comfort to know that you have a lot of the same symptoms. I would love to connect and talk more with you about it
I had my first one yesterday. I went to the ER and the nurse was so rude. She said I was faking. That hurt me so bad knowing I had no control over my jerks and tremors what so ever. I didnt even stay to get evaluated. I left.
So sorry that was your experience Raven😓 I can understand how that hurt to be invalidated! I’m proud of you for not staying with those who did not give you what you needed. I hope you’re doing ok. Thanks for taking the time to share your story!🦋
@raven that’s the way I feel about it people are so rude
Naturally Graysful I LOVE your hair the grey is amazing looking
I hope you reported her! That is extremely unprofessional! I'm sorry that happened to you.
@@NaturallyGraysful Thanks! I recently got evaluated by a neurologist and a psychologist. I should have some answers to what is going on Dec. 1st. I have a pretty good idea that PNES is highly likely.
You are a gift and a blessing. It is the middle of the night, my sleep is interrupted again by the seizures. I was looking for something, anything, that would speak to this and the Lord led me to you! Thank you…I have subscribed and I am excited to follow your videos.
I wish I could give you a hug. I’m also blessed with an amazing support system and I lean on God..
Thank you for sharing. I'm very proud of you that you kept up your beauty and life together. I'm not sure yet what I have but doctors are working on me. whenever I get an attack if its panic and seizure attacks, my symptoms are confusion, lost, extremely scared, hearing things, seeing things, smelling and tasting something very unpleasant, and extremely nauseous. the only thing that keeps me from fainting and having a seizure attack sometimes is deeply inhaling and exhaling when I feel those symptoms coming on, but only sometimes it works....not all the time.
Tara Singh Hi Tara so nice to meet you! Thank you for watching and sharing your experience with me. You are definitely not alone and the symptoms can vary but glad to hear that deep breathing can help you at times. 🦋
Thank you so much for making this video. I was diagnosed in 2015 after a car accident. I, too was also in nursing school and only had 6 months left to graduate at that time. Unfortunately, I wasn't able to finish due to this. I read majority of the comments and I went through the same experience with doctors and nurses thinking that I was faking and that I just needed to get up and walk. I went through the entire episode of it all for a good year, and had a walker to help me get around without falling. Recently, I've started to open and up and talk about it. I have never followed up with any doctors or neurologists because of feeling like they "write me off". It's been a difficult journey. Though I do not suffer from the physical manifestation of an onset, I do experience chronic migraines everyday, paralytic fatigue which is exhausting, and internal tremors. Based off of your knowledge and experience from it all, where do you think I should start with doctors and trying to regain control of my life? The long lasting symptoms have definitely controlled me all these years and I'm just ready to regain control of my health and be a good mom to my two kids, 5 and 2.5.
Hello. I have recently been diagnosed with FND as well and have another comment here describing. I have found a treatment that is helping. Although it’s a multi approach for sure. But have you looked at medical cannabis ? Specifically the oil?
thank you for sharing ❤ I want to share my story there isn’t enough information- I just need to put it together in a way that makes sense… and hopefully with some helpful tips.
Hey Naturally Graysful, I’ve recently been diagnosed with PNES, and before watching this I thought I was the only one with PNES and the symptoms that I would feel before it and after it. I wanted to reach out and say thank you for making this video and the sites to look at for more information about this diagnosis.
Hi Haley thanks so much for letting me know I am not alone. You're most welcome! Sending you compassion for the PNES struggle! I have an update coming up soon on my PNES.
You are so wonderful and your testimony has helped me❤
Thank you for the book recommendation I'm going to order it as I am trying to find as much information as I can about this disorder. I am currently going through diagnosis for this disorder having started with acute onset 'attacks' 6 weeks ago. My aura is the same as yours, but I always yawn, get rapid eye movement when I try to close my eyes and sometimes get frontal head pain, and stiffness of the muscles in my neck and head, which lets me know I need to get to a safe place. I also get the weakness of my legs like they are about to give way on me, and the cold feet! I have watched a few of your videos on PNES/NEAD now and thank you for posting them. You have a calming voice and are very easy to listen too :) take care, sending you wellness wishes from the UK !
Thank you for sharing your story! I agree that the onset of the aura gets me looking for a place to lay down or sit still. I'm so glad this video served you. I am going to put more videos on how I cope, so stay tuned. Thank you for watching, taking the time to comment and your kind words. sending you compassionate hugs!
Thank you I have been having these car accidents single car n dissociationing for years n was misdiagnosed with epilepsy but recently was diagnosed with PNES this video brought relief to me to kno Im not alone ..
You definitely are not alone Lasasha, I am sorry to hear about the accidents and misdiagnosis. 🦋
May God bless you and anyone who is suffering from these attacks 🙏 ❤🥰 thank you for sharing. Very recently I have been diagnosed with NEA too. Its not a nice feeling going through these experiences but we have try our best to listen to our bodies and look after our health and mental wellbeing 😊
Im concerned about someone else who has the same problem buy I pray and i know Jesus has the answer. Thank you for relating your story so that others can be helped. God bless love you and will pray for you also. Just trust in Jesus.❤
Thanks for sharing your story. I was first diagnosed in 2010. I had them constantly for 3 years. Then they stopped until this year. I am trying g different therapies to alive them. Wishing g you well in your journey.
I got this condition when I was 15 and now I’m 25 I really appreciate you story I have never thought there was other people in the world who had this I thought I was alone to be honest I’ve never known anyone else til now that has PNES
I was just diagnosed with PNES 5 days ago so thanks for sharing. When I exert myself they ramp up, I am really interested in that book!
My prayers are with you. I have some health problems and sometimes it is a struggle to get out of the bed. GOD BLESS YOU ❤️🙏
Thank you so much Bessie. I appreciate your support. I’m so sorry to hear you are dealing with chronic illness also. Pace yourself and do what you can. 🦋
Thank you for this video I have been diagnosed with this illness after suffering for 11 years. I’m still trying to learn about it more. It’s very scary x
Chimmylovesfood Hi I’m Nina what’s your name? It can be scary especially when you don’t know much about it. Please email me at naturallygraysful@gmail so I can give you some resources.🦋
Thank you for sharing your story! I’ve been working as a therapist for a year and a half I have a young 14-year-old client that’s been going through this. I have no idea how to help besides trauma focused CBT the Neurologist‘s have not explain anything to her mom. So I’m bout to watch all your videos see what I can learn God bless you!
You're most welcome! Thank you for watching and taking the time to share. What you're doing for your patient is so important. To process that trauma and learn to compassionately deal with the seizures helps so much. I also am in therapy because the neurologists aren't able to do much besides rule out Epilepsy. I find the most help through therapy and also learning what my triggers are. Sending you compassion and thanks for the important work that you do.
Wow, that sounds really scary. Thank you for your bravery to share.
Thank you so much for your support! It can be scary but the more I learn the better I cope 😉🦋
@@NaturallyGraysful I agree 100%. I have been diagnosed with COPD and of course that comes with flare ups. As you said, by me educating myself, I have learned to cope a lot better. Keep sharing your story and inspiring others. Blessings!
@@CoachReneeJones well hello chronic warrior! COPD is not easy to deal with but I so appreciate you letting me know that my story makes a difference. Appreciate your support!
As I understand it, panic attacks are also, non-epilectic seizures. Often, anti-seizure medication is prescribed. Also, when a person has them, their brain fires in the SAME areas and manner as a person who is having an epileptic seizure.
I thank you for this information, and I have subscribed. 💕
Miriam Havard Nice to meet you Miriam thanks for your support☺️🦋 and for that information. That is first time I’ve heard panic attacks as seizures. Thank you for sharing that.
@@NaturallyGraysful you're most welcome!!! 😊
Thanks for sharing!! Stay strong🙏🏾🙏🏾
Thank you so much for taking the time to give me an encouraging comment. ☺️🦋
Thank you for sharing your experiences. I have episodes that begin with a strange tooth sensation, feeling a sudden hot flush, increased heart rate and a sense of panic. Sometimes they subside but sometimes I faint and "wake up" later with my house a complete wreck, sometimes injuring myself (cuts, bruises, sometimes requiring stitches) and none of my doctors know what's going on. I'm perfectly healthy, fit, 39 yr old male, all heart and brain scans are normal so these episodes are unexplainable. I do have a history of depression & anxiety stemming from childhood trauma & abuse but take very mild medication, eat well, sleep well and have a stable home/work life. I'm hoping your video points me to a possible answer that i can discuss w/my doctors (today is the 1st time I've heard of PNES). Thank you!
Hi Ro thank you so much for sharing your story! I’m so sorry you have to deal with this. Have you gone to a neurologist? That is who diagnosed me. I will say that many of us who have PNES have had some trauma and abuse in our past. Not sure if you have gone to therapy because even if our physical bodies are fit our nervous system and traumatic past can wreak havoc on us. Learning about triggers we aren’t aware of or stress can bring them on. This is definitely a journey so be patient with yourself and listen to your body. Sending you compassion and hope that helped you.
Here is a site to learn more about pnes-www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
Thank YOU💗,I've had NEAD'S for 15 years ,I'm 21 now and I am definitely an understanding and empathetic person because of my attacks👌🏽
Thank you for sharing your story and that empathy is a gift💕
@@NaturallyGraysful 💯💯💯
Thank you !!! For your courage sharing your story.
You're most welcome Mayra thank you for watching and taking the time to leave your kind comment. Do you have a seizure disorder?
God bless you ❤️
I have been diagnosed with pnes of April 2021. I am still learning and living with this.
You are not alone Mardell! Remember to be patient with yourself as you learn how to cope.🦋
Thank you very much
Thank you for your transparency ❤❤❤
Thank you so much Dee, appreciate you! 🦋
So glad I found your channel. Thank you for sharing this because now I know I'm not insane.
So glad you’re here Andrea! You’re definitely not insane or alone. You are strong for what you go through 🦋
First of all thanks for the video! But I was just curious, you talked about "having one" like A seizure. Is it just one seizure and if so how long does it last? I have pnes and each little seizure itself lasts about 15-30 seconds, but I will have maybe 15-30 or more in a row. The other night they started at 11:00 and I was still going at 3 am. I don't know how to get them to quit!! My drs. say to meditate and journal. I even use a healing meditation. I'm so frustrated. Sorry for the rant. If anyone can help me I would love it. Thanks.
Patricia Garner hi Patricia you’re most welcome for the video. The amount of time they last varies depending on the type I’m having. Sometimes it’s just facial spasm. Similar to you it’s not one long seizure but the from the time they start then on and off til it stops can be hour or two. I send you compassion because it is difficult to deal with. Please email me at NaturallyGraysful@gmail.com
Hi I would recommend telling a loved one to do something shocking like putting ice in your hands after you come out of one. After putting ice in your hands try to hold a conversation with the person as long as you can before you have another one. they should slowly start to get further apart and eventually stop. This method helps to break the neural pathway in your brain that is getting caught in a loop and can’t break out on its own. I have the same problem and this works for me better than anything else I’ve tried. Hope this helps :)
God bless you 🙏
I have been diagnosed with FND. I was having up to 30 fits a day. I found my own treatment (doctors not helping) and reduced the fits but still having loads of milder seizures and sensory dysfunction. Mine were also called panic attacks at first and not treated early enough so it’s escalated combined with lockdown stress. so I now can’t leave the house alone and need a wheelchair to go out.
I’m finally in therapy now and waiting for my new perscription.
I have psychological and physical triggers.
I call them functional seizures. Or tell people it’s a seizures disorder like epilepsy.
I have psychological issues but I don’t think it’s only that. It’s like my nervous system has blown up and I have major sensory deregulation.
You also have other triggers… hormones, coffee… i just don’t believe we can separate the mind and body in this way to call them psychogenic. Although psychology plays a massive role for sure.
I don’t have any answers yet but Thankyou for your video. My first one was this year was shaking hands contorted face and neck muscles and weird noises coming from my mouth like mumbling but trapped in my body. I feel ill before hand just like you said. Have fibro too and other conditions if you want to chat. Multiple lost bits of time too .
Good Morning Queen. 🙌 🙏❤️👍💪
I experienced a non epileptic seizure for the first time in years, I went to a clinic so a doctor to check it out.. now Im waiting for my EEG appointment.
Sorry you had your first seizure but glad you have an appointment to help determine what the cause is. Sending you compassion 🦋
Thank you
Hi I think I have PNES . I’ve been feeling these feelings since 2013 it just got worst. My tingle in gums/ teeth . Feeling in my face only my left side, sensation in my head that feel wired and just out of it. 😔 seeing my neurologist to do an EEG. Hope I get some answers want to feel normal. It’s scary cause I feel alone every time I try to explain what I’m feeling. Thank you for sharing. If you can tell me how you feel now or getting better will really help . Thank you god bless
I was diagnosed with them 2 years ago and I'm still trying to learn to live with them. I honestly hate them as I feel like they've ruined my life. I can't work because of them and nothing I've tried to relieve stress has helped. 🥺
Learning to cope is ongoing so know you're not alone. That's good you did what you could to find stress relief which does help.
thanks for your video. this was my first to view on the topic. I am having speudoseizures for 23 years now. In Hungary Europe no one could tell me the exact name of this condition. I have not received proper medical care for many years. It was hard for me to accept only the psychological cause as my sister had real epileptic seizures, but according to her doctor not the "normal kind", because it only happened 3 times within a couple of years. Last year I was hospitalized after changing my SSRI medication as I was having seizures every day. now I am still on duloxetine, and I fell much better, but I was just wondering if anyone experienced being fine after psychotherapy without antidepressant. I am feeling tired all the time and I know these medications have sedative effect. good to see people with similar condition here, thanks
Thank you for sharing! So helpful. I do have a question regarding other tests. Have they done MRI studies? If so, do they ever find non specific white matter lesions? I am currently really weighing many years of very big neurological issues, and this is just a question I have. If this is too personal to answer online I understand totally.
Love your outlook! Keep it up girl
Hi Audra thanks so much for watching and your question. I have had an MRI a long time ago they did not see any lesions but maybe I can ask for an updated test. I would suggest more tests if you want to rule out other things that you may think could be going on. Feel free to keep me posted on what you find.
So far when I’ve experienced this, it’s been dismissed as a panic attack, but I do think I have this since it mimics seizures. I have an appointment with my pcp to refer me to a neurologist. Hopefully they don’t dismiss me too or I get some kind of answer that would make sense. These “panic attacks” are MUCH more physical lately. Either that with like spasms and shaking, or staring blankly in space not being able to respond so🤷♀️
My daughter is not always able to hear and sometimes cannot remember but confirmed dx with neps 2 neurologist . Continuous EEG but i always thought it was odd she has unconsciousness and memory lapse. Also good point about the good events causing it too. That was the case for her too .
Did the Dr. try to do ECT on you. Because they are pushing for ECT badly for my son.
Oh I forgot to mention if I did happen to faint and have a seizure I would wake up confused, feeling like I'm dying, tongue bitten, body muscles painfully contracted and the worst migraine headaches I have ever felt over the last 20 years of having migraine headaches
Tara Singh I’m so sorry to hear that Tara. It makes sense though because our bodies go through so much during an episode that we don’t feel until it’s finished. Remember to take time to recover🦋
Thank You!!!!! Omg I had a big one today , on way to Dr . And boyfriend with me .. I got to Dr I couldn’t get on scales, talk, speak , convulsions.
They had me on sezuire Med but upped it , then sent me to ER , today ..
After EEG said nothing wrong ?!!
Maybe I was mentally unstable ?!? Wanted to Cokd Turkey seizure medication ?!?
I have a Brian injury ( and now some sort of sezuire ) it sucks embarrassing ans painful to go through ..
God!!! I hope I can get help
Hi Joanna, I am so sorry to hear about what happened! First of all you are not alone. It can be so frustrating and embarrassing. How have you been since you commented? I hope you were able to find some answers. Know your pain and story is valid even if "professionals" don't see it.
How long have you been on your meds I have the same condition I am currently on levetiracetam and Carbamazepine
You not alone i just findout that i been going through with non epilepsy seizure. Which are trigger with my PTSD for auto accident.
Thanks so much for watching David. Sorry to hear you also experience these episodes.
Also did they try the cognitive behavioral therapy with SSRI combo ?
Sad that it's a chronic illness. My 21 year old granddaughter has just been diagnosed with it.
Do people with PNES get severe headaches or burning sensation in their head after experiencing seizures?
Are we able to get social security for this. Mines are triggered by light which causes me to have a migraine. So its very hard to be in light for a long period of time i might can last an hour
My fiancé has it 🙁. It’s real scary and I’m still here researching on it and Trying to learn what these type of seizures are. She needs to go to group therapy, Dbt therapy and Cognivtivity therapy. My apologies can’t spell that word right. And what good activities is good for her to do? Plus she suffers with depression, Stress and anxiety. Please help me understand this and How to develop her from having less seizures
Marsh Mello so sorry to hear your fiancé suffers from this also. Please send me an email to naturallygraysful@gmail.com and I can send some resources. Thank you for watching and commenting 🦋
My husband just got professionally diagnosed with PNES. He struggles alot in the mornings . It's unfortunate cuz he misses out on alot with spending time with our 1yr old son. So I'm trying to find diet changes that steer towards brain health and we r going to try out cod liver oil. Just anything to ease the disorder rather than cure it...well idk how it's gonna turn out. Just gonna take a wack at it anyways.
Sorry to hear about your husband. I applaud you for you supporting your hubby cause it’s not easy for those who love us to see us deal with this condition. I hope the diet change helps. It definitely helps me. Sugar and caffeine I found triggered my episodes.
I have pnes as well I have had it since 2018.
Thanks for sharing that we aren’t alone Mary. How have you been coping?
@@NaturallyGraysful well I have coping ok, I just take it one day at a time.
It is through my observing and listening to the psychiatry establishment, unless they have experience PS first hand, with all due respect, inner-standing PS will remain foreign. All they know is to follow the cop out clinic protocol (call 911). The only help there is is inner-standing the inner you and a caring cheerleader. Seek out a caring and great listener. Make great use of this individual because this world doesn't have many. I was my own cheerleader for many of years. I learned to inner-stand my triggers and stressors.
Great tips! I agree that we have to be our own advocate and supporter and apply self-compassion to cope with this condition.
I have PTSD, anxiety and PNES. Transportation is one of my hugest frustrations; I can’t drive. Do you deal with this too?
Hi Nicki you are not alone with that frustration. I also am not able to drive. Thankfully my husband is my designated driver since everyone is home but when he wasn't I would have to get rides to go places.
Naturally Graysful do you ever feel like cargo or completely dependent on others?
I just got diagnosed with pnes and the way it was explained almost made me feel like they were saying I was faking it or like I was crazy . I had a seizure and the dr came n very nonchalantly and was like what is it now .....
Laneysa you can be reassured that you are not faking and this condition is real. So sorry you had that experience with that doctor. Find out more at this website nonepilepticseizures.com/ the book on this site was helpful for me.
@@NaturallyGraysful I was so annoyed however I will look into the book ASAP !!!! By the way the grey hair is EVERYTHING!!!!!!!!! Love it
I have FND it’s a software problem with the brain. My FND started after a car accident l was treated for Parkinsons for 18 months. It’s a very miss understood illness. I was treated by a Professor Edward in London.
Just being diagnosed 1 week now being taking topamax takes 3 weeks too work suffer for over a year befor being diagnosed with pnes
Thank you for sharing your story! You are not alone. Sending you compassion because it isn’t easy! I hope these meds kick in soon to give you relief!🦋
Hi! You should try Gluten free/laktose free diet for remove fibromialgy disases.
I have conversion disorder too...4 years now
Thank you for sharing fellow warrior 💪🏽🦋
My story is almost exactly the same!
Thanks so much for watching Bill! You're not alone!
I also have fibro, migraines with and without aura, cfs, raynauds I could go on lol. I have FND with PNES. Mine have lessened since I was let go from my job and did therapy. Was hard bc I dont have the normal cause such as abuse or anything traumatic in the mainstream sense. Most likely PTSD from the effects of being chronically ill. My pnes are not very noticeable to others but r worse when I'm sleep. I had them years before diagnosis but just didnt know what they were.
I was diagnosed after having a fully aware seizure in my sleep. I woke in the middle of it and could feel it all and was painful for me clenched twitching muscles, jaw, face. I blacked out before it was over. First I thought it was a dream but noticed the next day I kept smelling weird things and could not speak and was very out of it. I was already seeing a neuro for small fiber neuro. So I called n got n appt. Many months and tests later I was diagnosed with FND with PNES.
I'm still struggling with coping with all my ailments which can be a trigger. I'm trying to destress and do art when I can to help. But just wanted to share a short version. Also Im a naturalista too! Love your hair!
GfyEmyLouLou thanks so much for taking to comment and tell me your courageous story beautiful 🦋 I’m Nina! Please feel free to email me at naturallygraysful@gmail.com if you have any questions or ideas for a video you’d like me to do. I’m sorry you struggle with this condition also. It can definitely be hard to cope with! If anything I encourage you to have compassion for yourself and the reality of it being difficult to juggle so much! Compassion goes a long way! 🦋
@@NaturallyGraysful thank you! Yes compassion is something I need to give myself more of. I was a perfectionist and really had to work hard tonlet go of that as it was giving me anxiety and pain with things not being perfect and me not being able to do things. Thank you for your kind words!
@@GfyEmyLouLou not sure if you saw this video ruclips.net/video/eWLg6X3ZwlA/видео.html where I talk about how self love helps me cope with my chronic illness. You're not alone I am a "recovering" perfectionist too! I can be a perfectionist even with being compassionate lol. If I beat myself up then I add on top of that but it's day at a time and practice and we will get there🦋
I am having these same issues. I think I have been having them since I was around 14 years of age.
Thanks for sharing your story Ann! It must be hard dealing with this at a young age! But you’re not alone and your strong for what you go through. Sending you compassion 🦋
I have had seizures and dont have epilepsy. I had grand mal big seizures convulsive ones after being on prozac for 6 months. I wonder if this is what i have. No dr could give me any answers!!
I had my first one a couple months ago I'm 19 was 18 at the time I was terrified but they just believed it was a panic attack or was getting off of some drugs because they gave me a drug test a mile long and sent me back home with some calming pills I came back couple days later because I had another huge seizure ended up there for 5 days then I had to go back to the hospital a month later to get diagnosed on my birthday week so in order to get diagnosed I had to stay in the hospital getting tests done that made me feel horrible on my birthday week medicine does seem to be helping but I already have tourettes and autism so it just adds more onto the pile as well as my Dad decided to stop paying child support in the middle of my stay at the hospital just because I couldn't get into the MRI needless to say that hurt because he didn't even visit or asked if I wanted him to visit and the bad thing is is I had to disown half my family because of that because whenever we brought it up and how fucked-up it was did my siblings took his side so essentially it felt like this disorder kind of ripped apart my fragile relationship with my father that in my opinion was starting to get better but on the other hand it is also making my boyfriend move in with me which makes me immensely happy so it's bittersweet
I had almost the same experience for my first seizure. I feel like they only get worse.
Jessi Piemonte Hi Jessi so sorry to hear they are getting worse. Please email me at NaturallyGraysful@gmail.com so I can offer you some resources.😉
I had it about 4 years ago and they didn’t know what to call it. All of a sudden I’m working a great job doing good. I work from home, mind you I had already been to the hospital twice because it felt like my heart was hurting and they told me all the tests were negative.
While working from home my heart started racing, I was sweating a little, then I felt like it calmed down, so I ignored it because they had already told me my tests were negative. All of a sudden I felt chest pains and I started to get really weak, honestly it scared me so I called the ambulance. When I told her what happened she gave me 4 chewable aspirin and I think it’s called nitroglycerin tablet to put under my tongue, within 5 minutes I was feeling so much better.
While at the hospital just waiting for a nurse to see me, my body started to shake uncontrollably, she asked me if I was cold I said no, she touched my skin and said that I felt cold and she placed a blanket on me. In the meantime they had 2 ladies asking me questions about my life and I was like oh Lord now they’re thinking it’s all in my head, so the 2nd lady comes and starts asking me those same questions after while my body went bananas on her, I’ve never seen people move so fast. So they did my testing for 5 days and discovered that I had PNES. I was like what in the world was that, they couldn’t really explain it so I’m on RUclips and the internet to read anything I can to find out about it. Thank you for your video, very informative. God Bless you my sister.
Elisa thank you for taking the time to share your story! I also have experienced the shivers the first time I had a seizure. I am so glad that this video was helpful to you and not sure if you have read this book which gives more info amzn.to/3GCLCZY. It gives more insight into the condition. More importantly know you're not alone beautiful 🦋
These are my symptoms too! ☑️
Thanks so much for watching!
i have this same disorder and im 16 trying to cope with it
do you ever get them from being cold? That is my trigger
Hi thank you butterfly I have been going through this so long.its very confusing every one knows something not right .it make my neck tight puts me in a stare
.it drops my mouth sometimes on one side. I can here every one when it happens but it's hard to respond
no my friend you are not alone. seizures blow weather epileptic or not. thank God you have a suportive husband and your son understands and most importantly the holy trinity understands. and you are never alone.The holy spirit always knows whats going on. peace out! take care. and keep the faith. sometimes it's the only thing we have.
Arthur thank you for your kind words!
I completely agree that Jehovah has blessed me with a supportive husband and my faith in the Bible’s future hope when there will be no more sickness keeps me strong to endure.
Stay safe Thanks again🦋
They just diagnosed me with pnes idk how to feel about it it almost sounded like they were saying pnes is a “crazy people thing “ which offended me ... I guess I just gotta do my research on it
I have non epileptic and it sucks cuse I was a tow truck driver
I’m sorry to hear that Ryan that is definitely a challenge when it comes to driving! Thank you for sharing your story!
Do u have apnea n feel almost suffocating during attacks?!
Great question when I first started having the attacks and when they were severe I did have brief moments where I felt like I couldn't breathe. I never passed out I was aware even when I felt like I couldn't breathe kind of like when it happens in a dream.
Cycle and time of day has a large impact on my episodes.
Please send name of book .