ROGUE: Deceitful, vicious, destructive, operating outside normal or desirable controls

There is an illness that, although it is old, has yet to be properly understood and appropriately treated by modern medical science.  It’s an illness that affects the brain—often appearing suddenly and without warning in people who previously were leading normal, successful lives. Tragically, it is responsible for at least 90% of the approximately 50,000 American and 800,000 global suicides every year.

This illness needs its own name so that people who have it can be properly recognized and helped.  Because patients with this illness are attacked by their own brains, and until science steps up to adequately name and address it, we are calling it ROGUE BRAIN SYNDROME.

What is Rogue Brain Syndrome

A person’s brain can be the source of many illnesses—Alzheimer’s disease, traumatic brain injury, stroke, and many others. We all recognize that the individuals experiencing these medical conditions are victims of what’s wrong with their brains. And, generally, we give them plenty of sympathy, understanding, and compassion.

But, there’s another kind of brain illness, one that is not well understood, which according to the National Institute of Mental Health, is responsible for contributing to 90% of the nearly 50,000 suicides occurring every year in the US.

This kind of brain illness, though it has existed for centuries, doesn’t even have its own name to adequately describe it.

It has been broadly and inadequately labeled with the name of a far less severe illness called “depression”.

We believe a huge contributing causative factor to ROGUE BRAIN SYNDROME is stress.

Interestingly, symptoms widely associated with it were observed in soldiers as far back as World War I.  It is captured on the face of this affected WWII soldier taken in 1944, when it was called the “thousand-yard stare”, an apt description of people who suffer from this debilitating illness which literally robs them of their ability to function normally.  This phenomenon is also linked to what we commonly call PTSD today.  It is common among service men and

women due to the obvious stress and psychological trauma they face.  But, civilians can develop this brain illness from other kinds of stress as well.  Because it doesn’t have its own name and because we believe it to be a biologically based illness that ravages its innocent sufferers, we call it Rogue Brain Syndrome.

https://en.wikipedia.org/wiki/Combat_stress_reaction

ROGUE BRAIN SYNDROME: SYMPTOMS

Here’s a general description of someone with Rogue Brain Syndrome. 

Your friend, colleague, or loved one is someone who has lived a very normal life as a high functioning person with a normal educational level where they achieved above-average grades and then went on to excel in a professional career, taking pride in their work and making a dependable living doing what they enjoyed and were good at.

But, at some point, for reasons that are often unclear that person began to sink, in fact, crumble, into a state of disintegration. It could have happened gradually or almost overnight, but the progression included a variety of basic and critical observable difficulties such as the following:

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  • Lack of ability to concentrate
  • Loss of confidence
  • Extreme fatigue
  • Physical irritations or ailments often worsen; back pain, acne outbreaks, vision problems are some examples
  • Difficulty with normal sleep patterns (either not sleeping or sleeping a lot)
  • Difficulty eating (not being able to eat, or not being able to get enough to eat)
  • Extreme feelings of anxiety and/or panic
  • Lack of ability to plan for the future
    (Today is all consuming. Tomorrow seems impossible.  Weeks down the road seem all but incomprehensible)
  • Ruminating or obsessive thinking that never ends in resolution
  • An aversion to being around people, even a feeling of embarrassment or shame
  • Difficulty performing tasks that they had a lot of previous successful experience doing
  • Feelings of extreme self-deprecation (criticism), only able to think about one’s worst qualities
  • Extreme hopelessness. A belief that life will never get better
  • An inability to get out of bed or to go to work or to carry out even the simplest of tasks
  • Difficulty or inability to carry out normal personal grooming
  • A desire to die in order to escape from the excruciating pain of how bad they feel and how uncomfortable it is to not be able to function normally. Often they feel there will never be an escape and that they and everyone else would be better off if they were dead.

How to Help

First Aid for Rogue Brain Syndrome

Support

The brain of the person with Rogue Brain Syndrome is not working properly or they wouldn’t be struggling so hard to function-or even just to survive.

Be aware that the most important thing a person with RBS needs is gentle rest. It is not their fault. They are sick. They are NOT lazy. They are sick. They didn’t cause it, so don’t look for things to tell them to do to feel better.

If a person has abused their diet for most of their life and presents with a heart attack to the ER they are not immediately lectured about how they should be or should have been eating. They are in an acute state of physical and mental distress. Compassion dictates taking care of their presenting need and stabilizing them.

Likewise, this is NOT the time to lecture someone with Rogue Brain Syndrome on how they got sick or how to fix it. They are in an extreme state of agony and torment that you can’t even begin to understand. Plus, by the time you are even aware that they are ill they have been suffering in silence trying everything under the sun that they can figure out how to try to get better.

Too often, because the word “depression” is used to describe RBS, people ascribe all kinds of remedies and quick fixes for the afflicted. All that does is make them feel even more hopeless and miserable—and you have NO idea how miserable they feel. Don’t say, “Oh, but I’ve been depressed, and…” Shut up. You haven’t had Rogue Brain Syndrome. It’s an entirely different animal. And, the one, most powerful thing you can to do help someone with this illness is to support them and give them time and space, without pressure, to heal.

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mitigate lethal threats

Don't be afraid to ask someone if they have had thoughts of harming themself.  If they have access to firearms ask them if they would allow a trusted friend or family member to store those firearms for them until they have sufficiently recovered from their current illness.

Encouragement

When a person has Rogue Brain Syndrome, especially if it is the first time they have fallen prey to this horrible illness, the illness itself tricks them into feeling and thinking that they are the cause of the illness, and furthermore that they are a deeply flawed and unworthy person.

This is because several structures of the brain are overactive and contributing to such thoughts and feelings, while other parts of the brain are largely dark (inactive) during RBS (as shown in medical imaging tests).

The amygdala, a group of structures deep inside the brain, has been shown by imaging technology to be overactive in the brains of people with RBS. This is the part of the brain that regulates many emotions such as anger, fear, anxiety, sorrow, etc. The hippocampus is also active in people with RBS. Together the amygdala and the hippocampus affect the endocrine system and the primal fight or flight reaction.

Meanwhile, other sections of the brain that would normally balance these centers of fear and anxiety are inactive, according to imaging studies, in people with RBS. No wonder they have slowed reactions and low concentration. Furthermore, they have an inability to feel positive emotions, experience pleasure, and have a strong emotional and mental constitution while in this state. It’s not their fault. Their brain is not working as it should and they are scared to death.

So, because the brain “tells” a person who is ill with RBS that they are defective and irredeemable – that others would be better off without them because they cannot find a way, no matter how hard they try, to get back to normal – it is incumbent upon family and friends of people affected with this illness to reassure them that they are sick, not defective, and that they have your love and support, not your judgment or impatience. Tell your friend or loved one that you know that they are sick, that you want them to get help and that you will be there for them no matter how long it takes for them to get back on their feet. This person needs permission to not put pressure on themselves to get better in a certain period of time. And, they certainly don’t need people trying to feed them quick fixes, like vitamins, gym workouts, or special diets. Those things can come after the person starts to recover. Right now, this person needs to know that you are putting no expectations on them for recovery in a certain timeline. The best thing you can do is love them unconditionally and reassure them that when their brain has had enough time to heal they will begin to feel better. Reassure them that this will not go on forever even though it seems like it is taking a really long time.

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Help with the necessities of life

A person who has RBS should not be expected to continue to go to work if they are having a really hard time functioning. If they are to this level of impairment you will know it. They will be having the flat affect of the “thousand-yard stare” and they will be having problems just grooming themselves to their normal standards. It is cruel to force a person in this state to continue to get up and go to work. They are terrified that they will have a traffic accident or make a mistake at work that could harm someone. 

Yet, they are embarrassed to tell anyone they feel this way for fear that they will be completely ostracized and judged incompetent. See number 2 above.

Anything a close friend or family member can do to step in and help the person suffering from Rogue Brain Syndrome to interface with their boss and to figure out a plan for handling the payment of bills, children care, and other necessities of life is literally life- saving to a person with RBS. This requires consideration and respect for their boundaries. Always seek their permission to help them with these things while offering your absolute support and encouragement.

It doesn’t hurt to consider having this person give you a medical power of attorney or at least to list you on their HIPPA consent process with any doctors that they may see while you are helping them, assuming you are their main advocate. Implicit in this step is, of course, working with this person to try to get them scheduled to see a competent medical practitioner. Some people may resist this. Don’t push them. Be available and willing to help when they are ready. Doing the other things already mentioned will help a lot.

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Risks and Formal Treatment Options

You might ask, “What if they are suicidal?” It is always a judgment call as to when and if a person appears to be in enough danger that intervention should be taken. If so, calling 911 is always an option. Be aware that involuntary commitment laws vary from state to state and law enforcement officers are trained to use their best judgment in making decisions about involuntary commitment. This is one of the most harrowing things a person will ever face with a loved one. 

But, be assured that if you take the steps outlined above, you will be going a long way to helping relieve the pressure, agony, and worry that the person with RBS feels. Be sure to check the Resources page for support services in your area.

It might take more than one person to give support to the level recommended here. It’s no small thing when a heretofore independent person becomes as incapacitated as one does when they have Rogue Brain Syndrome. This isn’t an easy scenario to deal with, but following these guidelines is a way to help ensure that this person will live through their illness. People with Rogue Brain Syndrome are at extremely high risk for suicide and it is important to give them the support, care, and time to heal that they need.

If you should take your friend or loved one to a therapist or doctor that insists on treatments that the patient isn’t able to participate in, for example, Cognitive Behavioral Therapy (CBT), don’t hesitate to back off and find another doctor. CBT is an effective form of treatment for those who are able to function well enough to participate. But, for someone who is not it only adds pressure to perform that they do not need and that could be dangerous.

In fact, there is a huge lack of treatments that are appropriate for the person with RBS. Clinics and treatment centers that advertise in patient treatment for “depression” have requirements that the patient be able to follow a treatment schedule, participate in individual and group treatment sessions, etc. They are too sick to go for the treatment that is advertised to help people with what they supposedly have. Hmmm.

This illustrates the reason that the Rogue Brain Project exists. These treatment centers obviously do not understand the illness of RBS, only the less severe illness they call “depression”. That leaves sufferers of Rogue Brain Syndrome looking at inpatient psychiatric care or taking their chances at home as their only options. We have created the Rogue Brain Project in order to begin working and networking to find a better treatment option (better than the one you are now reading about—which is the best advice we have for now) and also we hope to influence the development of a whole new paradigm for this illness and its treatment. That would include a name just for this illness that will protect its sufferers from ever again having to suffer the hurtful and demeaning advice—sometimes even offered by doctors and nurses—that they should just exercise and get out in the sun more.

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What to expect

Rogue Brain Syndrome is a very nasty illness. There are no quick fixes for it. Medications take weeks to begin working and sometimes have to be changed. But, there are genetic tests that can help doctors to try drugs that will metabolize best for each patient.

Keep in mind that every day feels like an eternity for the person suffering from RBS. It tends to feel like time passes more slowly for care givers as well. The despair a person with RBS feels can sometimes seem like a sucking black hole to those around them. Try to be patient. 

No matter how hard it is for family or friends it is so much harder for the person who is ill. Don’t get impatient if the person doesn’t want to go outside or have their curtains open. This illness can literally cause sunlight to be painful to the sufferer’s eyes. Something about the trauma of the stress that has broken them down seems to have had an inordinate effect on their brain and their senses are extra affected. Try to respect their needs and give them a quiet and respectful environment.

People with RBS generally have a lot of anxiety. Wouldn’t you if you couldn’t function normally and you knew that everyone knew it? They can be very irritable. They may develop strange behaviors to cope with their uncomfortable state. Maybe they can’t tolerate the radio on in the car. Maybe they like to go for a long walk on the spur of the moment—most likely, by themselves. They can’t usually groom themselves well or keep up a normal routine. They have difficulty eating and sleeping normally. They often ruminate in their mind about all kinds of things—they feel like their life is in shambles and they desire to find a solution, but they usually just go around in circles because their brain isn’t working optimally.

Sometimes people with RBS can’t even converse very lucidly. People with RSB typically do not like to be around people or go out in public. It is painful to them. They feel ashamed that they cannot function and they don’t want to be put on the spot or run into someone who might ask them unwelcome questions or possibly judge them. Try to be understanding. This person you love is suffering so much. But, your love, support, encouragement, and patience will go a long way in helping them get better.

Don’t be surprised if the person with RBS has other aches and pains or complaints, too. This is normal. Also, don’t be surprised if the person with RBS isn’t all that faithful to taking medication, at least at first. This illness is so brutal that it is difficult for the person who has it to have faith that medication will help them. Patiently remind them and help them by encouraging them to take their medicine even if they don’t believe it will work. And, don’t look for overnight improvement. It takes time.

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Caveat

Remember that Rogue Brain Syndrome is based upon a profile. The information that appears in Rogue Brain Project is based upon that profile. It is not to be applied to other kinds of illnesses; for example, it may not be appropriate to apply this information to someone who has suffered most of their life with a state of depression or perhaps some other illness that include psychosis or paranoia.

Rogue Brain Syndrome is what the medical community and the DSM-V call Major Depressive Disorder. But, that illness, for reasons already mentioned, needs a new and unique name, and perhaps Rogue Brain Syndrome should be defined as a subset of that illness because we are applying it to people who grow to established adulthood without any of its symptoms and then suddenly degenerate into this acute state of vulnerability. We are not doctors or researchers and we don’t have it all figured out. We’ll leave that to the professionals. However, we know what we know, and we share what we do know here with the sincere hope that it will help many people and, most importantly, save lives.

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