Brain on Fire...

[rainbowsandroses]

Hey guys, this is a movie/story that imo everyone who has ever suffered from a mental disorder/illness and even those who haven't/don't should read about and watch, the movie is entitled Brain on Fire.   It’s streaming on Netflix.  I watched it last night and wow so troubling but yet so inspiring and enlightening!

It’s about a young woman, 24 years old (Suzanne) who works at the NY Post who suddenly without warning began a slow decline into madness, experiencing delusions, hallucinations, psychosis and grand mal seizures among other troubling symptoms (severe insomnia), etc.  It chronicles the events leading to her misdiagnosis, hospitalization, and eventual diagnosis and recovery.

Below is a brief summary.

Anti-NMDA receptor encephalitis

Susannah's disease manifested in 2009 when she was just 24 years old. It began with sensory issues, which she later described in her article "My Mysterious Lost Month of Madness" as experiencing the world “brighter, louder, more painful.” She also began experiencing numbness in the whole left side of her body, and paranoid hallucinations of bed bug bites.

Concerned by the numbness, Cahalan sought out a neurologist who ran multiple inconclusive tests, including two normal MRIs. Susannah began experiencing severe insomnia and continued behavioral abnormalities. One night at her boyfriend's apartment, she had a grand mal seizure and woke up in St. Luke's Hospital. Cahalan describes the hospital neurologist as dismissive, and she received her first of multiple misdiagnoses: alcohol withdrawal.

Psychiatrists also misdiagnosed her with schizophrenia and bipolar I disorder. Cahalan was released from the hospital, and as her disease worsened, she had another grand mal seizure.

After her second seizure, Cahalan's parents took her to the hospital for an EEG and demanded that she not be taken to a psychiatric floor. Unlike many anti-NMDA cases, Cahalan was never admitted to a psychiatric ward. While at the hospital, Susannah had her third seizure and was immediately placed on the epilepsy floor of New York University's Medical Center.

Susannah's hallucinations and delusions soared during the month she spent in the hospital. Susannah had two lumbar puncture procedures that revealed high white blood cell counts. Because high white blood cells count signify brain swelling, the case was officially passed to neuro-pathologist and epileptologist, Dr. Souhel Najjar at NYU medical center.

End of summary.

What's interesting is that while watching the movie, I became so frustrated by the doctors who kept insisting she was suffering from alcohol withdrawal!!  Which was ridiculous as she hardly every drank and at that time, had not has a drink in two weeks!

She was psychotic and hearing voices so I assumed it was schizophrenia which the doctors assumed as well and wanted to place her in a psychiatric hospital!  Of course, eventually it was discovered it was not schizophrenia or bipolar at all but rather a brain disease that with the proper meds is and was in her case, 100% curable.  She is 39 now, still works at the post and totally recovered.

It makes me wonder (and it made her wonder too as she spoke at the end), how many people are misdiagnosed as having a mental illness like schizophrenia or bipolar and placed on the wrong medication for the ret of their lives making their lives worse, when in fact if the doctors had worked a little harder like Suzanne's one neuro-pathologist did, they would have determined it was something else and not even a mental illness but rather a disease in the Western Hemisphere of her brain that with the right medication, is 100% curable!

Thoughts?

  

 

[Batya33]

I’m so sorry she went through that. I had a friend who was misdiagnosed with Bored Housewife Syndrome when indeed she had benign brain tumors. I was misdiagnosed for days in the hospital when I really had a UTI and lol was tested for pregnancy despite explaining I was a virgin. I know they have to make sure. My friend who passed away from breast cancer was misdiagnosed when she first presented with a lump. Again I’m sorry this happened and in general I’m always mindful of advocating for my health and on behalf of my son.  

[rainbowsandroses]

I don't trust medical doctors anymore, sadly.   I mean even in Suzannah's case, they all insisted she was suffering from alcohol withdrawal!! She hardly ever drank, really??

After the episode I discussed on @yogacatthread, I was also misdiagnosed with an anxiety disorder and chronic insomnia and placed on a sleep med called Ambien and an anti-anxiety/antidepressant called Paxil.  I became addicted to the Ambien and after a year almost died when it no longer worked and I was completely **** in the head, no joke.

After that and different doctors, I was diagnosed with Bipolar 2 (severe mood swings with no psychosis like Bipolar 1).  I was placed on the proper medication finally and began healing, although it was a slow process and I HATED the side effects from the meds.

So I went off them eventually against doctors orders and began researching how I could manage my illness holistically without meds.  Which meant treating the whole body - mind, body, spirit and emotions together.

I am now VERY happy to report that I am managing my symptoms beautifully WITHOUT meds.  I found a really good therapist finally (she's NOT a medical doctor) and I run, do yoga, eat healthy, don't drink alcohol and try avoid negative people and negative situations as those really effect me more than anything else.

Anyway, I share my story to show that one does NOT need pharmaceutical medication to treat a mental illness in all cases.  Personally, I think they do more harm than good, jmo. Especially pain meds like opioids (Oxycodone) which is still prescribed believe it or not, is extremely addicting and people have died from it and accidental overdoses.  But I dislike pharmaceutical medication in general.

There is something called St. John's Wart that is a plant-based herb and can treat depression. 

I take a VERY lose dose of CBD (5 mg or less) occasionally or sometimes kava and passion flower to calm my anxiety when I need it (it's not addicting) and do yoga and run occasionally although it's hard on my knees so I don't run as much now.  

I still have my moments, but I am so much better, knock wood!! 😂

Anyway, I guess I was ready to share my journey with y'all, thank you for listening!!

 

 

 

[Seraphim]

My dad was a non med compliant B1 and I lay at his door why I have every mental health issue I have . He CHOSE to destroy his family and kids so he could have his “ highs” and mania. 
 

Doctors and medications have uses . Are either perfect ? Nope . Doesn’t mean they have no value . Herbs and plants doesn’t mean it is safe for all and sometimes even conflicts with some medications and or conditions. 
 

No one approach is an end all . 

[yogacat]

Hey RAR!

It would seem to me that doctors can only diagnose based on what symptoms are present and I'm sure you know they often refer to the DSM.

Much of diagnostic labeling and mental illness is subjective but I imagine that doctors are relying on what the patient tells them and they don't have the luxury of knowing an individual's medical and psychological history and life before the appointment.

Misdiagnoses are common in any discipline methinks, especially if the doctor is not qualified for that particular discipline, this is why it's wise to go to a doctor you know is experienced in that particular area otherwise you might not have the most accurate diagnosis...

And not to overgeneralize, but doctors who work for an insurance company or work for a big hospital for example, have quotas to meet and time restrictions etc... time is money after all!! So people fall through the cracks and are often misdiagnosed or dismissed by doctors who miss things because they are racing through patients every 10 minutes for example.

Also I imagine many patients just want to suppress the symptom rather than eliminate the root cause which tends to take a more deeper and exhaustive process of introspection and - then the question becomes, 'where does it all begin?', which very well may sound, to a doctor that is under pressure, like some sort of philosophical talk, and some just aren't in the business of turning a huge profit by being psychiatrists, they went in with good intentions to help people.

Not all, but some have pretty good morals. Maybe they didn't have all the right tools in their tool belt, or maybe they were relying on an old or faulty DSM or whatever, but at the end of the day I think they should be shown some kindness because its a heavy responsibility trying to navigate somebody else's mind when we all have trouble enough navigating are own.

Heck, not a person, but my dog was recently VERY ILL, and I thought I was going to lose him, but that medical vet SAVED HIS LIFE! I ran into her at a taco stand (lol) and went up to her and she gave me a great big hug and I thanked her for saving him.

Of course, there are doctors that are essentially drug dealers and the pill-pushing is a major problem that drug companies instigate with shady tactics. But there are lots of bad schools out there full of bad teachers too, aren't there?

My family member, that I mentioned in my prior thread, was overprescribed Xanax and Hydrocodone and became severely addicted to it. I wanted to sue that doctor. I cannot get ANY anti-anxiety meds prescribed to me because of the restrictions now that deal with the opioids and the over-prescription of benzos. Its a really stupid and reactive system. In other words, just throwing meds at a problem is actually causing more problems. This is where sharing and learning from others comes in handy, because we can read someone's story and learn something that we would not have otherwise understood!

Others have said meds have saved their lives!

I have been suffering from Panic Disorder for most of my life, and while I am happy that they are strict about prescribing anti-anxiety meds I just have to find alternative methods.

It's a double-edged sword isn't it, the med-free approach?  Every one of us is different. What works for me may not work for you or anyone else, for that matter. There are people who require very strictly monitored psych medication, even for their entire lives, depending on the severity and type of their diagnosis.

But I would venture to guess that in many cases, tertiary "management" techniques can work to at least alleviate some symptoms enough to help a person live a more normal life. This would be in ADDITION to meds in many cases, and in some cases, it may be ok to stop the meds with medical guidance.

[rainbowsandroses]

38 minutes ago, Seraphim said:

My dad was a non med compliant B1 and I lay at his door why I have every mental health issue I have . He CHOSE to destroy his family and kids so he could have his “ highs” and mania. 

I'm sorry you experienced that @Seraphim truly.  It sounds like you've had a really tough time with both your sexual abuse and mental disorders and those of your family.

I am not speaking of someone who refuses to help themselves to their own detriment and that of their family by refusing pharmaceuticals and NOT finding other ways to treat the illness simply because they enjoy their highs.  That's wrong and again I am so sorry you went through that, wow.

That said with Bipolar 1 where there is psychosis and schizophrenia, they are both very very serious illnesses that require pharmaceutical medication.   I understand that.

What I was referring to are doctors especially HMOs here in the U.S. treating patients like they're on an assembly line, not taking the time and conducting the proper testing to assure a proper diagnosis and saying "here go take this med and get back to me a month."  Not even knowing for certain what the heck the illness is!!

That is what happened to me and also Suzannah to a greater degree.  Like I said, with all her symptoms, the grand mal seizures, the delusions, the psychosis, etc. to even suggest let alone believe with certainty (which is what they did) that she was suffering from alcohol withdrawal was irresponsible, unconscionable and frankly lazy.  She told them several times she barely even drank!!!  But here's a med, call me in a month. 

Meanwhile, she had two more grand mal seizures which nearly killed her and was deteriorating every single day.

In my case, I didn't sleep for approx. 5 days so after a quick conversation with me, the doctor placed me on Ambien and the anxiety med.  Nearly died a year later because they were the wrong meds!!  

I received advice to sue but I couldn't be bothered.

Anyway, you and yoga are correct, there is no one size fits all, and perhaps I should be more forgiving of medical doctors who are often overloaded with too many patients and experience their own pressures as well from the higher ups.

I will try because I might actually need them someday. 

Thanks guys.

 

[Seraphim]

My son was misdiagnosed and medicated from age 4 to 12 for a condition he didn’t have . 
 

The thing is doctors are humans. Humans make mistakes. Sometimes it is criminal or lazy . Sometimes an honest mistake because the issue is so out there they have never seen it before . 
 

My dad was an abuser pure and simple and he terrorized his wife and kids. He told me it gave him a sexual thrill to terrorize people and make them scream and cry and he adored doing it and he hated people anyway. 

[Seraphim]

He was most dangerous when he was manic. You had to fear for your life then . 

[rainbowsandroses]

The movie was based on her best selling memoir Brain on Fire:  My Month of Madness if anyone is interested.  I just ordered the book!  Amazon in paperback, I will receive on Saturday.

I have also been spending the better part of the day reading articles and medical journals about her autoimmune disease and about how difficult it truly is for doctors to obtain a correct diagnosis when it relates to mental illness (versus a physical illness which they can actually SEE) which made me feel a little bit better about my own experience.

Due to her parents diligent efforts and refusal to accept she had a psychiatric condition and her great healthcare coverage which covered costs in excess of one million dollars total, it was not psychological, it was neurological!

I am NOT a science person but interestingly enough I was able to understand everything I read and found it fascinating!!  I am going to continue reading tonight. 

She also authored a second book called The Great Pretender:  The Undercover Mission that Changed our Understanding of of Madness, which I also plan to read.

Anyway, I think this is an important topic and thanks to all who contributed to this thread!

Nite.