I am blind, and I read books through the national library service for the blind. I downloaded the audiobook, Brain On Fire, on the BARD Mobile app, and I couldn’t shut it off. I had to listen from the beginning to the end. It took me a little over six hours to read the whole thing. This book is better than the movie. It’s nice to see Susannah on her feet and doing well. She is a remarkable woman.
I have been watching these videos as my daughter aged 34 was a hard working carer for 19 years and after 3 months of absolute hell was eventually diagnosed with this anti nmda receptor encephalitis only through a lumber puncture her test came back was this she is in hospital at this very minute 14 March 2022 doctors said he never heard of it says does not now of any one in Britain who has this she went through all the same as this poor girl everyone in hospital thought she was mad eventually put her in a mental hospital she was sectioned for 28 days she is now back in ninewells hospital and on steroid drip praying to lord god in heaven she comes back to us the hell she has been and going through so I have been typing searching if there is full recovery or reco at all as can’t and won’t watch the film as to painful to watch if it’s anything like my daughter the feeling of hopelessness and pain that you know your daughter is in there some where and trapped so ty for this book and film so people can educate about this horrendous disease we think what triggers hers she had covid not bad but was about a week we think it all started fainting then seizures and all rest came so quickly like confusion saying things like hurry shut the door in hospital we going to all die hurry and things like the odd time her self would come out and say I’m scared am I going to die then another day have I got dementia or she would say help me please I’m scared this was some of many many things she would put her hands out in front of her and squeeze her fingers bin and out saying things like I’m rich I killed a baby lots bad things and must say her seizures were non epileptic and she trashed the side room in hospital I can go on and on I’m praying please please bring my baby back to me xx
I was waiting patiently to hear this, certainly a unique perspective, that discussion begins at ~40:00. Thanks for posting your note. It piqued my curiosity!
This is incredible. What a fortunate, courageous young woman. And in one of her interviews she mentions how sad to think of the UNlucky ones, people in institutions - who actually suffer from this medical condition, but have been misdiagnosed, or just not treated at all.
Susannah's story is incredible, she motivated me to take a train to NYU from Chicago in September 2013. I saw a colleague of Dr. Najjar, Dr. Devinsky. I was cautiously diagnosed with autoimmune disorder. Since my problems have increased I struggle to maintain employment. I am an extreme left handed person with inherited neurological blips. I cannot complete treatment because of health insurance, and feel to be on a sinking island. If anyone has any ideas or can point me in the right direction please let me know. Thank you.
I have been dealing with Complex Regional Pain Syndrome for a decade. I had to self diagnose after years of abuse from doctors. I have read more about pain than most doctors will ever read. I think NMDP receptor antagonists will help all auto immune issues. I successfully treat my crps with the over the counter cough medicine that contains as it's only active ingredient as Dextromethorphan or DXM. It is in the same class as ketamine, which doctors want to charge me $10,000 every 3 months for the rest of my life. Ketamine works better for me bringing my pain from a 10 to a 0, but DXM can bring ot to a 3 to 5, and its otc and the doctors can refuse to prescribe. I started at 1 geltab containing 15 milligrams and went up to 10 containing 150mg of DXM. The right dose for me seems to be taking 45mg wait an hour and take 45mg more. I then wait 6 hours and repeat the 45/45 split dose and then a 3rd time 6 hours later. No idea if this would be of any help for you, but if ketamine infusions are documented to work on your condition, then maybe DXM could help. Best wishes on finding successful treatment.
My heart goes out to you. I am so sorry for what you have to go through and you shouldn’t have to go through this. It wouldn’t be this way if we had better politicians in charge of the system. This infuriates me and it saddens me too. God bless you. Wishing you all the love in the world, Flyin’ Jake PS, Too bad you can’t talk to Susannah Cahalan. She seems to me like somebody who would raise hell with the system and get things moving. Perhaps your story should be published in the New York Post.
Schizofrenia can also bei caused due to a horrifed childhood. I ready a book about a woman who hab eben abused emotional by her mother since birth. Her mother say that, and thus an excuse , her mother said that she hab had a bad childhood herselve
I was hoping someone would ask if someone who has this illness is on a constant decline until they end up in a coma or dead. In other words, is the illness always progressive? Is that how a doctor could differentiate between this illness and schizophrenia? And, if someone has been diagnosed with schizophrenia (or even bipolar disorder), should they seek a second opinion to see if they can be tested for this illness? I don't know anyone, personally, who has schizophrenia, but my mom had a bipolar disorder (called manic depressive disorder then). She wasn't on a constant decline, but I have to wonder if someone can have this disorder for 20 or 30 years and it presents as bipolar or schizophrenia. Also, I'm impressed that there doesn't seem to be long term effects from having had this disorder: no speech impediments or other obvious neurological problems.
No, there are case reports of people going 20 years self medicating with alcohol for the sleep problems. Usually the longer less severe cases are in men.
I have a thought of why females get autoimmune conditions more. As a male with an autoimmune condition, Complex Regional Pain Syndrome (CRPS), I think females get more autoimmune issues because females have more white blood cells than males. I have an autoimmune condition and I have high levels of white blood cells for a male. Anyone heard of this or have any thoughts?
Yes my daughter would say look at size of that spider and she wouldn’t watch television as said everyone and thing was in slow motion or fast forward that was at the very beginning she would say do you see that is kinda like matrix well me and my husband never watched matrix but we new what she meant but couldn’t understand it she would say rude words like a Tourette’s thing if you no what I mean she also had a urine infection so they thought maybe delirium she was diagnosed so many different things
Ivonne Marmolejo It is an autoimmune disease. I have something similar.. Not sure what hers is from but mine was 'sleeping' in my Thyroid condition. Hashimotos Hypothyroidism became Hashimotos Encephalitis. Which is a higher amount of antibodies than average, and they attack your own bodies tissues as if it were a disease. Interesting I have never thought about vaccinations being part of the problem?
I'm not medically trained but what I have heard/read is that vaccines elicit a very unnatural immune system response which can trigger those kinds of problems especially if they are 'sleeping' like you mentioned. There is a big vaccine debate going on right now and I don't want to get sucked into it. With all of diseases going on ( I have Celiac) I think we should keep an open mind about it.
+WavesOf Thirteen Its spiritual in nature, heaven and hell, Satan and Jesus. I had Jesus come to me in dreams and face to face to cure me and boy did he!!! Can you imagine feeling heaven here? Ask for the living water from Jesus and to share in his death and resurrection while you live, to see Him while you live.. then you will love Him after you receive the kingdom of heaven within you here on earth. And if anyone is ashamed of me in this life i will be ashamed of them in heaven, said Jesus.
just4fame Thank you for your thoughts and knowledge. I do believe that everything we encounter in life is spiritual, if we seek to find... Have a wonderful day! :)
I am blind, and I read books through the national library service for the blind. I downloaded the audiobook, Brain On Fire, on the BARD Mobile app, and I couldn’t shut it off. I had to listen from the beginning to the end. It took me a little over six hours to read the whole thing. This book is better than the movie. It’s nice to see Susannah on her feet and doing well. She is a remarkable woman.
My daughter is 22 and going through this same issue. 😢
I have been watching these videos as my daughter aged 34 was a hard working carer for 19 years and after 3 months of absolute hell was eventually diagnosed with this anti nmda receptor encephalitis only through a lumber puncture her test came back was this she is in hospital at this very minute 14 March 2022 doctors said he never heard of it says does not now of any one in Britain who has this she went through all the same as this poor girl everyone in hospital thought she was mad eventually put her in a mental hospital she was sectioned for 28 days she is now back in ninewells hospital and on steroid drip praying to lord god in heaven she comes back to us the hell she has been and going through so I have been typing searching if there is full recovery or reco at all as can’t and won’t watch the film as to painful to watch if it’s anything like my daughter the feeling of hopelessness and pain that you know your daughter is in there some where and trapped so ty for this book and film so people can educate about this horrendous disease we think what triggers hers she had covid not bad but was about a week we think it all started fainting then seizures and all rest came so quickly like confusion saying things like hurry shut the door in hospital we going to all die hurry and things like the odd time her self would come out and say I’m scared am I going to die then another day have I got dementia or she would say help me please I’m scared this was some of many many things she would put her hands out in front of her and squeeze her fingers bin and out saying things like I’m rich I killed a baby lots bad things and must say her seizures were non epileptic and she trashed the side room in hospital I can go on and on I’m praying please please bring my baby back to me xx
I am so glad to see Susannah Cahalan is doing well. Thanks for publishing this interview.
I love that she said neurology and psychiatry should be one thing!! I firmly believe that and this is the first time I've heard some else say it.
I was waiting patiently to hear this, certainly a unique perspective, that discussion begins at ~40:00. Thanks for posting your note. It piqued my curiosity!
She was an isolated patient, but look how much change she is doing on the medical system ...!. so amazing 🙏🏻✨🙌🏼
I absolutely love this women. She is such an inspiration.
This is incredible. What a fortunate, courageous young woman. And in one of her interviews she mentions how sad to think of the UNlucky ones, people in institutions - who actually suffer from this medical condition, but have been misdiagnosed, or just not treated at all.
Very informative. Thanks a lot for sharing.
Susannah's story is incredible, she motivated me to take a train to NYU from Chicago in September 2013. I saw a colleague of Dr. Najjar, Dr. Devinsky. I was cautiously diagnosed with autoimmune disorder. Since my problems have increased I struggle to maintain employment. I am an extreme left handed person with inherited neurological blips. I cannot complete treatment because of health insurance, and feel to be on a sinking island. If anyone has any ideas or can point me in the right direction please let me know. Thank you.
I have been dealing with Complex Regional Pain Syndrome for a decade. I had to self diagnose after years of abuse from doctors. I have read more about pain than most doctors will ever read. I think NMDP receptor antagonists will help all auto immune issues. I successfully treat my crps with the over the counter cough medicine that contains as it's only active ingredient as Dextromethorphan or DXM. It is in the same class as ketamine, which doctors want to charge me $10,000 every 3 months for the rest of my life. Ketamine works better for me bringing my pain from a 10 to a 0, but DXM can bring ot to a 3 to 5, and its otc and the doctors can refuse to prescribe. I started at 1 geltab containing 15 milligrams and went up to 10 containing 150mg of DXM. The right dose for me seems to be taking 45mg wait an hour and take 45mg more. I then wait 6 hours and repeat the 45/45 split dose and then a 3rd time 6 hours later. No idea if this would be of any help for you, but if ketamine infusions are documented to work on your condition, then maybe DXM could help. Best wishes on finding successful treatment.
My heart goes out to you. I am so sorry for what you have to go through and you shouldn’t have to go through this. It wouldn’t be this way if we had better politicians in charge of the system. This infuriates me and it saddens me too. God bless you.
Wishing you all the love in the world,
Flyin’ Jake
PS,
Too bad you can’t talk to Susannah Cahalan. She seems to me like somebody who would raise hell with the system and get things moving. Perhaps your story should be published in the New York Post.
She is the sweetest person 😭
ɷɷ I Havee Watchedd Thiss Movieeee Leakedd Versionnn Hereee : - t.co/SjZpZXw5gt
I feel like I have encephalitis and I have pretty much every symptom but I've had a normal MRI and blood tests.. desperate for help!
She's very pretty . Amazing that this disease gets diagnosed at all since it seems to manifest differently in different people and age groups ....
This book and movie give me so much hope for the future, that diseases like schizofrenia might be cure able. Her book is truely a heroic deed.
There might not be any psychiatric
diseases at all.
Schizofrenia can also bei caused due to a horrifed childhood.
I ready a book about a woman who hab eben abused emotional by her mother since birth. Her mother say that, and thus an excuse , her mother said that she hab had a bad childhood herselve
i like this story
Sound on full blast and can still barely hear it at the begining :(
I wonder if John Walsh remembers her?
I was hoping someone would ask if someone who has this illness is on a constant decline until they end up in a coma or dead. In other words, is the illness always progressive? Is that how a doctor could differentiate between this illness and schizophrenia? And, if someone has been diagnosed with schizophrenia (or even bipolar disorder), should they seek a second opinion to see if they can be tested for this illness? I don't know anyone, personally, who has schizophrenia, but my mom had a bipolar disorder (called manic depressive disorder then). She wasn't on a constant decline, but I have to wonder if someone can have this disorder for 20 or 30 years and it presents as bipolar or schizophrenia.
Also, I'm impressed that there doesn't seem to be long term effects from having had this disorder: no speech impediments or other obvious neurological problems.
No, there are case reports of people going 20 years self medicating with alcohol for the sleep problems. Usually the longer less severe cases are in men.
I have a thought of why females get autoimmune conditions more. As a male with an autoimmune condition, Complex Regional Pain Syndrome (CRPS), I think females get more autoimmune issues because females have more white blood cells than males. I have an autoimmune condition and I have high levels of white blood cells for a male. Anyone heard of this or have any thoughts?
Femele have outoimmune b/c of their chromosome
wow! one of the most interesting things is how she managed to make a profit of this!!
Yes my daughter would say look at size of that spider and she wouldn’t watch television as said everyone and thing was in slow motion or fast forward that was at the very beginning she would say do you see that is kinda like matrix well me and my husband never watched matrix but we new what she meant but couldn’t understand it she would say rude words like a Tourette’s thing if you no what I mean she also had a urine infection so they thought maybe delirium she was diagnosed so many different things
I heard about this story from an anti-vaccination site. It is my understanding that this was brought by an adverse reaction to a vaccine?
I read this book and there was nothing whatsoever about vaccines being a possible cause of her disease.
Ivonne Marmolejo It is an autoimmune disease. I have something similar.. Not sure what hers is from but mine was 'sleeping' in my Thyroid condition. Hashimotos Hypothyroidism became Hashimotos Encephalitis. Which is a higher amount of antibodies than average, and they attack your own bodies tissues as if it were a disease. Interesting I have never thought about vaccinations being part of the problem?
I'm not medically trained but what I have heard/read is that vaccines elicit a very unnatural immune system response which can trigger those kinds of problems especially if they are 'sleeping' like you mentioned. There is a big vaccine debate going on right now and I don't want to get sucked into it. With all of diseases going on ( I have Celiac) I think we should keep an open mind about it.
+WavesOf Thirteen Its spiritual in nature, heaven and hell, Satan and Jesus. I had Jesus come to me in dreams and face to face to cure me and boy did he!!! Can you imagine feeling heaven here? Ask for the living water from Jesus and to share in his death and resurrection while you live, to see Him while you live.. then you will love Him after you receive the kingdom of heaven within you here on earth.
And if anyone is ashamed of me in this life i will be ashamed of them in heaven, said Jesus.
just4fame Thank you for your thoughts and knowledge. I do believe that everything we encounter in life is spiritual, if we seek to find... Have a wonderful day! :)