We at national Seizure Disorders Foundation are currently hearing more about conversion disorder. It's important people know that PNES is considered a conversion disorder and a person can have epilepsy ( more than 2 seizures in 1 year) and PNES( conversion disorder). Those living with conversion disorder are misunderstood so I am so glad to see you are stepping up to educate, raise awareness, and support for those with conversion disorder.
its hard to remember what happened. Like one time my dad carried me through to my mums room as she has a bigger bed and when i 'came round' i didnt know where i was. I just wonder if anyone else does this - i have regression. I will go to speak and my words come out as if im two years old. My sentences are all jumbled up and i make no sense or i talk in gibberish. I can be talking one minuite then a random word shouts out of my mouth and i cant understand what it means. Sorry its so long. xxx
My conversion disorder is part of a series of other mental illness's. I have anorexia, BPD, Mixed anxiety disorder and I am a self harmer. My conversion disorder seems to come and go. I can go for month without 'episodes' then have weeks where its constant. Mine seems to be more like a seizure. My whole body tenses and i shake really fast, i know im doing it but i cant stop. If it goes too far i lash out and hit my self or who ever is around me. For a while after i cant open my eyes and...
Hi Kattterina! On CNN the Anderson Cooper 360 show, they did a story tonight (1/18/12) on 12 girls at the same High School that have all been recently diagnosed with Conversion Disorder! This seems to be coming a more common occurrence with women. Typically with a history of abuse. These girls are being told it's stress. Everyone of us, it seems, is being treated as though it's all in our heads. You've had over 12,000 views on u tube. Are any groups getting together to find a solution?
@rhondab1456 Wow. Thank so much for your comment and information. I have what I like to call the 'past of doom', in my experience my conversion disorder is internalized anxiety and stress that becomes rerouted from a emotional response to a physical response. Because of it I had trouble getting diagnosed with ADHD. No groups so far getting together yet.
Hi I am in Australia and have been recently diagnosed with Conversion disorder. I get seizure like activity. I guess I am at the stage of understanding the triggers. I was sexually abused and raped as well as in a relationship full of domestic violence. I believe this has been the major cause of the conversion disorder as well as other stresses in my life. I also have bipolar disorder, anxiety disorder and PTSD. I have found that meditation has helped me as well as therapy! I also write a blog
@Bulletsforthebroken Hello :) I found meditation helped a lot for me too! I also have PTSD. I hope you progress well in controlling the seizures. *HUGS*
Thank you for your openness and honesty. It's nice to know I'm not alone with my conversion disorder. It is beyond frustrating to me. I hate having people see me when I have a fit or when my legs give out and send me to the floor. I was teaching full time when my first fit hit. The following day, I attempted to go to school and teach. About two hours later, I was in an ambulance. Needless to say, I'm not able to teach right now. I wish I could throw a switch and turn it off.
@kjmylly *HUGS* I am so sorry about your job. I'm glad I could help in some way at least. I hope you can find what works for you soon to help lessen the episodes. <3
oops! I had to quit my job, give up my cats, move in with my boyfriend and have lost so much independence. I've been to the store on my own and had an 80 year old man ask if he could help me! (I'm half his age!) It's been very frustruating for me and those around me.
I really appreciate your honesty and sharing your experience. You are very well spoken. I feel like the doctors' only answers are to take more meds. It's good to know I'm not alone in this. I really want to find a solution.
@rhondab1456 Thank you! Wow that sounds similar to how I was diagnosed. Many neurologists were basically like "why are you here?". I had lost a lot of independence too, I felt like a burden a lot and it made me depressed. Drug trials are basically how I got to a solution. I am on klonopin 0.5mg every night. It helped so much. I hope you can find your solution really soon <33
I have strange random muscle twitches for no apparent reason, normally in my ribs, legs, face, or arms, mostly on my left side... And I get headaches with strobe lights, moving lights, bright lights, and flickering lights but so far as I know I don't have seizures... another good thing to mention is I'm stressed out 24-7.... any ideas? (post on my channel if so)
I too have been diagnosed with conversion disorder. My left side is weaker than my right and I have trouble speaking but that is getting better. I fall from time to time and get very tired very easily. I am in rehab and have to take valum to keep me calm. It is unusual in me in that I am male and am 48. I also have tremors so I have a lot going on. I am trying to figure out what triggered it but the doctor I see is very caring and has worked with the disorder for 20 years so I am in good hands.
Has anyone measured what your heart rate is doing during an episode? are you better lying down and worse standing up? It's possible you may have POTS- a physical condition often historically mistaken for anxiety disorder / conversion disorder. We know now it is down to a malfunction of the autonomic nervous system. The most important thing for you to know is, if you DO have POTS (I do), there's plenty of treatment out there. Good luck!
Dear Katterina, a close friend of mine had nonepileptic seizures until she saw a doctor in cleveland ohio who helped her get rid of them, she told me he was an expert in nonepileptic seizures and that he really knew what he was talking about , i dont know his name but am sure you can find him, said he was a neurologist who specializes in epilepsy and nonepileptic seizures, and that he knew more than any psychiatrist about her problems, GOOD LUCK :)
And don't worry my mum always said "crazy people don't know they're going crazy"That helped me stay focused on getting better I went from three seizures or episodes a week to one or two a month and I can drive again Other than medical type stuff I went to counseling and made my life more simple But I didn't stop doing what I love either I had to stop running but I never stopped riding my horse Lady In a twisted way these have made me better-I accepted my past and worked through it You can do it!
Its so nice to see that there are other people like me! I am 18 and have had 78 seizures in the last year It started as blackouts confusion and short term memory loss but eventually grew to seizures I have been to a ton of doctors and eventually was diagnosed with PNES PTSD depression,and conversion disorder Through physical therapy counseling medications and accupuncture I have gotten a lot better-simplized my life I still forget things have an occasional seizure and get unbalanced dont give up
hey katttrina, was inspired by your video. Im going to put up my own tomorrow. I know exactly what you're going through. Ive been diagnosed with all those things too in the past. For a long time Ive been having seizure like symtoms, but I believe, from my own studies, that it is a conversion disorder. Im in the process of getting it checked out. I will explain in deep detail in my video. Would be glad to hear back from you. Good luck, bye...Joshua
GOD BLESS YOU, I KNOW WHAT YOU MEAN. WE ARE NOT CRAZY PEOPLE IN THIS WORLD HASN'T BEEN EDUCATED TO IUR ILLNESS. I BELIEVE THIS TOO SHALL PASS. I TRY TO DO ONE THING AT A TIME, I ALSO TRY TO STAY BUSY DOING CRAFTS, DRAWING, COLLECTING ROCKS ETC.....IT ACTUALLY HELPS MY MIND. I'VE NOTICE WHEN I'M NOT BUSY-I USUALLY GO THROUGH AN EPISODE. I'M BELIEVING "WE ARE JUST GOING THROUGH-IT & THE STORM WILL CALM DOWN. STAY POSITIVE, A VOICE THAT CARES
Dear Kattterina, do they give you any treatment plan to get rid of it because prior to getting diagnosed a few months ago, they referred me to a psychologist and after knowing what i have, they told me to still go on with it after the episodes that i have slowly progresses to getting worse coz i started shouting out annoying voices, so now i'm doing therapy to get rid of it but with some medications only when its necessary. Cheers.
Hi just seen you video, I have not had a diagnosis but i discovered it last night, I have blackouts etc but all very similar. Finally after all these years of low confidence and people telling me i'm a freak or faking. I knew i wasn't but started to believe i was bad. It started at school and i'm now 33. Finally after all these years it's not my fault. Thank you for your video. I too have been diagnosed with many things and most i dont believe i have.
I was diagnosed in less than a month followed with an EEG and Scans in 2 different places by 5 different doctors so its good to know i can relate to some one. I'm 21 now and just got diagnosed few months with it. :)
Thanks for the video. I have been diagnosed with conversion disorder and have non-epileptic seizures. I can have up to 8 a day at the moment, but when I was being diagnosed in hospital I had them every 15 minutes... not fun. When I feel them coming, I focus on centering myself in the now, it helps quite a bit, but not all the time.
It's good to hear other people with it as it's hard to come to grasp with it.
In my personal opinion people with Conversion Disorder have a Neuromuscular Condition that either hasn't been discovered yet or doctors are too lazy to try and figure out which complicated condition it is.
I paralyze all the time. The triggers are constant. The triggers match an Ion Channel Disorder, the diet for that same Ion Channel Disorder helps, and the meds for that Ion Channel Disorder helps. However, I can't get any doctor to recognize that I have that instead of Conversion Dis
Can I ask you a question? I am a mother searching. What are your attacks like from beginning to end. My child had "something" happen and it was very strange.
It was like a panic and a seizure.
He'd also been hooked on roboing and spice smoke. He swears he hadn't done anything before this episode. It scared the life out of me. He's trying to give up those addictions which btw I believe he was doing in order to self medicate for stress...
Just spent the weekend with my wife having PNES. She never had it before thursday... We were giving a presentation in college,. She had 1 at school, got an ambulance into the the hospital. WORST hospital experience ever. Thank you for your video. We went through a neurologist who came in for 20 seconds, said it was not neurological..so it wasnt his job..same thing with cardiologist...Spent so much time and they released us without a diagnosis. I complained. they got us one.pnes.
I hate having these, i get them when i see my parents or im in confined spaces. And yes! Doctors are completly unhelpful. Do you guys laugh hysterically after your seizures sometimes?
@chrisplus23 Actually, yes. Early in the stages of diagnosis, my family thought I was going crazy =|. And NOW when I laugh after they think I'm pretending. So frustrating lol.
Hi, Firstly youre not alone, over 38,000 in England alone suffer with this condition our youngest member is 5 our oldest is over 60
I'm part of NEAD Trust a reg UK charity (the only reg charity) for sufferers, families and carers of Non Epileptic seizures. We have hundreds of members worldwide on our secure free forum.
We are here to help everybody who is affected by this condition.
@monjanse no, but i do get a feeling like things aren't real/ disconnected from the world. its sometimes hard to talk during / between really intense episodes. i had been diagnosed with petit mal seizures -- seizures where you don't lose consciousness during them.
Had never even heard of this before... strange. Seems like it is a apparently a way that some peoples brains deal with stress, according to wiki. Best of luck with it, does not sound fun :\
@pokerslut530 thanks, its been a long road to even get to a diagnosis. i would like to point out that a lot of people's bodies deal with stress beyond their conscious control -- think getting sick/ colds a lot during a very stressful time. conversion disorder to me seems like an amplified, more dangerous way of doing the same thing.
We at national Seizure Disorders Foundation are currently hearing more about conversion disorder. It's important people know that PNES is considered a conversion disorder and a person can have epilepsy ( more than 2 seizures in 1 year) and PNES( conversion disorder). Those living with conversion disorder are misunderstood so I am so glad to see you are stepping up to educate, raise awareness, and support for those with conversion disorder.
Peace&Blessings -
Terrific Tonya,NSDF
NSDFbyTerrificTonya 4 days ago
its hard to remember what happened. Like one time my dad carried me through to my mums room as she has a bigger bed and when i 'came round' i didnt know where i was. I just wonder if anyone else does this - i have regression. I will go to speak and my words come out as if im two years old. My sentences are all jumbled up and i make no sense or i talk in gibberish. I can be talking one minuite then a random word shouts out of my mouth and i cant understand what it means. Sorry its so long. xxx
Mydreamweight 1 week ago
My conversion disorder is part of a series of other mental illness's. I have anorexia, BPD, Mixed anxiety disorder and I am a self harmer. My conversion disorder seems to come and go. I can go for month without 'episodes' then have weeks where its constant. Mine seems to be more like a seizure. My whole body tenses and i shake really fast, i know im doing it but i cant stop. If it goes too far i lash out and hit my self or who ever is around me. For a while after i cant open my eyes and...
Mydreamweight 1 week ago
what do these feel like?
Niceboy3377 1 month ago
Hi Kattterina! On CNN the Anderson Cooper 360 show, they did a story tonight (1/18/12) on 12 girls at the same High School that have all been recently diagnosed with Conversion Disorder! This seems to be coming a more common occurrence with women. Typically with a history of abuse. These girls are being told it's stress. Everyone of us, it seems, is being treated as though it's all in our heads. You've had over 12,000 views on u tube. Are any groups getting together to find a solution?
rhondab1456 1 month ago
@rhondab1456 Wow. Thank so much for your comment and information. I have what I like to call the 'past of doom', in my experience my conversion disorder is internalized anxiety and stress that becomes rerouted from a emotional response to a physical response. Because of it I had trouble getting diagnosed with ADHD. No groups so far getting together yet.
kattterina 1 month ago
Hi I am in Australia and have been recently diagnosed with Conversion disorder. I get seizure like activity. I guess I am at the stage of understanding the triggers. I was sexually abused and raped as well as in a relationship full of domestic violence. I believe this has been the major cause of the conversion disorder as well as other stresses in my life. I also have bipolar disorder, anxiety disorder and PTSD. I have found that meditation has helped me as well as therapy! I also write a blog
Bulletsforthebroken 1 month ago
@Bulletsforthebroken Hello :) I found meditation helped a lot for me too! I also have PTSD. I hope you progress well in controlling the seizures. *HUGS*
kattterina 1 month ago
Thank you for your openness and honesty. It's nice to know I'm not alone with my conversion disorder. It is beyond frustrating to me. I hate having people see me when I have a fit or when my legs give out and send me to the floor. I was teaching full time when my first fit hit. The following day, I attempted to go to school and teach. About two hours later, I was in an ambulance. Needless to say, I'm not able to teach right now. I wish I could throw a switch and turn it off.
kjmylly 1 month ago
@kjmylly *HUGS* I am so sorry about your job. I'm glad I could help in some way at least. I hope you can find what works for you soon to help lessen the episodes. <3
kattterina 1 month ago
oops! I had to quit my job, give up my cats, move in with my boyfriend and have lost so much independence. I've been to the store on my own and had an 80 year old man ask if he could help me! (I'm half his age!) It's been very frustruating for me and those around me.
I really appreciate your honesty and sharing your experience. You are very well spoken. I feel like the doctors' only answers are to take more meds. It's good to know I'm not alone in this. I really want to find a solution.
rhondab1456 2 months ago
@rhondab1456 Thank you! Wow that sounds similar to how I was diagnosed. Many neurologists were basically like "why are you here?". I had lost a lot of independence too, I felt like a burden a lot and it made me depressed. Drug trials are basically how I got to a solution. I am on klonopin 0.5mg every night. It helped so much. I hope you can find your solution really soon <33
kattterina 1 month ago
I was diagnosed 2 years ago. I've been to 3 neurologists, psychiatrist, psycologist, 3 ER visits, acupuncture, etc. I had to
rhondab1456 2 months ago
I have strange random muscle twitches for no apparent reason, normally in my ribs, legs, face, or arms, mostly on my left side... And I get headaches with strobe lights, moving lights, bright lights, and flickering lights but so far as I know I don't have seizures... another good thing to mention is I'm stressed out 24-7.... any ideas? (post on my channel if so)
BassPr0digy 4 months ago
You are beautiful and I hope things get better for you!
tlwest21 5 months ago
@tlwest21 thanks :)
kattterina 4 months ago
I too have been diagnosed with conversion disorder. My left side is weaker than my right and I have trouble speaking but that is getting better. I fall from time to time and get very tired very easily. I am in rehab and have to take valum to keep me calm. It is unusual in me in that I am male and am 48. I also have tremors so I have a lot going on. I am trying to figure out what triggered it but the doctor I see is very caring and has worked with the disorder for 20 years so I am in good hands.
tptgamecock 6 months ago
Has anyone measured what your heart rate is doing during an episode? are you better lying down and worse standing up? It's possible you may have POTS- a physical condition often historically mistaken for anxiety disorder / conversion disorder. We know now it is down to a malfunction of the autonomic nervous system. The most important thing for you to know is, if you DO have POTS (I do), there's plenty of treatment out there. Good luck!
loopylady81 6 months ago
Dear Katterina, a close friend of mine had nonepileptic seizures until she saw a doctor in cleveland ohio who helped her get rid of them, she told me he was an expert in nonepileptic seizures and that he really knew what he was talking about , i dont know his name but am sure you can find him, said he was a neurologist who specializes in epilepsy and nonepileptic seizures, and that he knew more than any psychiatrist about her problems, GOOD LUCK :)
jen4everlasting 7 months ago
And don't worry my mum always said "crazy people don't know they're going crazy"That helped me stay focused on getting better I went from three seizures or episodes a week to one or two a month and I can drive again Other than medical type stuff I went to counseling and made my life more simple But I didn't stop doing what I love either I had to stop running but I never stopped riding my horse Lady In a twisted way these have made me better-I accepted my past and worked through it You can do it!
MissLady2181 9 months ago
Its so nice to see that there are other people like me! I am 18 and have had 78 seizures in the last year It started as blackouts confusion and short term memory loss but eventually grew to seizures I have been to a ton of doctors and eventually was diagnosed with PNES PTSD depression,and conversion disorder Through physical therapy counseling medications and accupuncture I have gotten a lot better-simplized my life I still forget things have an occasional seizure and get unbalanced dont give up
MissLady2181 9 months ago
hey katttrina, was inspired by your video. Im going to put up my own tomorrow. I know exactly what you're going through. Ive been diagnosed with all those things too in the past. For a long time Ive been having seizure like symtoms, but I believe, from my own studies, that it is a conversion disorder. Im in the process of getting it checked out. I will explain in deep detail in my video. Would be glad to hear back from you. Good luck, bye...Joshua
joshyou2011 10 months ago
GOD BLESS YOU, I KNOW WHAT YOU MEAN. WE ARE NOT CRAZY PEOPLE IN THIS WORLD HASN'T BEEN EDUCATED TO IUR ILLNESS. I BELIEVE THIS TOO SHALL PASS. I TRY TO DO ONE THING AT A TIME, I ALSO TRY TO STAY BUSY DOING CRAFTS, DRAWING, COLLECTING ROCKS ETC.....IT ACTUALLY HELPS MY MIND. I'VE NOTICE WHEN I'M NOT BUSY-I USUALLY GO THROUGH AN EPISODE. I'M BELIEVING "WE ARE JUST GOING THROUGH-IT & THE STORM WILL CALM DOWN. STAY POSITIVE, A VOICE THAT CARES
gorbea1000 10 months ago
what meds do u take???
plushbanana 1 year ago
Dear Kattterina, do they give you any treatment plan to get rid of it because prior to getting diagnosed a few months ago, they referred me to a psychologist and after knowing what i have, they told me to still go on with it after the episodes that i have slowly progresses to getting worse coz i started shouting out annoying voices, so now i'm doing therapy to get rid of it but with some medications only when its necessary. Cheers.
stels248 1 year ago
Hi just seen you video, I have not had a diagnosis but i discovered it last night, I have blackouts etc but all very similar. Finally after all these years of low confidence and people telling me i'm a freak or faking. I knew i wasn't but started to believe i was bad. It started at school and i'm now 33. Finally after all these years it's not my fault. Thank you for your video. I too have been diagnosed with many things and most i dont believe i have.
Liannep77 1 year ago
I was diagnosed in less than a month followed with an EEG and Scans in 2 different places by 5 different doctors so its good to know i can relate to some one. I'm 21 now and just got diagnosed few months with it. :)
stels248 1 year ago
thank you for your video i have been dinagosed with non eleptic sezure i also wonder if its somthing eles that cause the "events" thanks me
melissainMI 1 year ago
Thanks for the video. I have been diagnosed with conversion disorder and have non-epileptic seizures. I can have up to 8 a day at the moment, but when I was being diagnosed in hospital I had them every 15 minutes... not fun. When I feel them coming, I focus on centering myself in the now, it helps quite a bit, but not all the time.
It's good to hear other people with it as it's hard to come to grasp with it.
buoyracergmail 1 year ago
In my personal opinion people with Conversion Disorder have a Neuromuscular Condition that either hasn't been discovered yet or doctors are too lazy to try and figure out which complicated condition it is.
I paralyze all the time. The triggers are constant. The triggers match an Ion Channel Disorder, the diet for that same Ion Channel Disorder helps, and the meds for that Ion Channel Disorder helps. However, I can't get any doctor to recognize that I have that instead of Conversion Dis
beck7422 1 year ago
Can I ask you a question? I am a mother searching. What are your attacks like from beginning to end. My child had "something" happen and it was very strange.
It was like a panic and a seizure.
He'd also been hooked on roboing and spice smoke. He swears he hadn't done anything before this episode. It scared the life out of me. He's trying to give up those addictions which btw I believe he was doing in order to self medicate for stress...
anyway, just wondering. Thanks
000mercedes 1 year ago
yeah and i bet that you feel like you are a nut regaurdless of what people say and that there is no hope for people like me with pseudoseizures.
Dont let your hopes go high because they will shatter. THERE IS NO HOPE FOR PEOPLE WITH PSEUDOSEIZURES BECAUSE THEY R NUTS!!!
mormon1238 1 year ago
Just spent the weekend with my wife having PNES. She never had it before thursday... We were giving a presentation in college,. She had 1 at school, got an ambulance into the the hospital. WORST hospital experience ever. Thank you for your video. We went through a neurologist who came in for 20 seconds, said it was not neurological..so it wasnt his job..same thing with cardiologist...Spent so much time and they released us without a diagnosis. I complained. they got us one.pnes.
TheThejbourne 1 year ago
I hate having these, i get them when i see my parents or im in confined spaces. And yes! Doctors are completly unhelpful. Do you guys laugh hysterically after your seizures sometimes?
chrisplus23 1 year ago
@chrisplus23 Actually, yes. Early in the stages of diagnosis, my family thought I was going crazy =|. And NOW when I laugh after they think I'm pretending. So frustrating lol.
kattterina 1 year ago
why do you get them when you see your parents?
gdj5 9 months ago
i have conversion disorder with seizures and im a minor i must say my doctors all suck
tiffanyspears27 1 year ago
Hi, Firstly youre not alone, over 38,000 in England alone suffer with this condition our youngest member is 5 our oldest is over 60
I'm part of NEAD Trust a reg UK charity (the only reg charity) for sufferers, families and carers of Non Epileptic seizures. We have hundreds of members worldwide on our secure free forum.
We are here to help everybody who is affected by this condition.
Take care
FuzionMX 1 year ago
do you looses conchiousness during this episodes?
monjanse 1 year ago
@monjanse no, but i do get a feeling like things aren't real/ disconnected from the world. its sometimes hard to talk during / between really intense episodes. i had been diagnosed with petit mal seizures -- seizures where you don't lose consciousness during them.
kattterina 1 year ago
Had never even heard of this before... strange. Seems like it is a apparently a way that some peoples brains deal with stress, according to wiki. Best of luck with it, does not sound fun :\
pokerslut530 1 year ago
@pokerslut530 thanks, its been a long road to even get to a diagnosis. i would like to point out that a lot of people's bodies deal with stress beyond their conscious control -- think getting sick/ colds a lot during a very stressful time. conversion disorder to me seems like an amplified, more dangerous way of doing the same thing.
kattterina 1 year ago
Actually it is a gift to have these. It is the body's way of telling us something isn't right in our life, and we need to change something.
gdj5 9 months ago
@gdj5 yeh but its something you cant change it sucks :( guess im just unlucky
cripstakyle 8 months ago