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PORPHYRIA FACTS: PSYCHOLOGICAL - MENTAL CHANGE
ANGER, ANS, & BIZARRE BEHAVIOR
Porphyria is a disease with many varying aspects which remains relatively
unknown among the general public.
Various neurological exacerbations of the disease are often confused and not
understood by most people and quite often are medical misdiagnosed as being
behavorial in nature with a posychological basis rather than a medical basis.
Anxiety and stress often turn to anger and may be considered bizarre behavior
to those who are unfamiliar with porphyria and its many manifestations.
SOURCE:
Penelope James LCSW
Patient Educator
++++++++++++++++++
Can porphyria patients demonstrate estreme bizarre behavior during acute
attacks?
The subject was a young man known to suffer from the in Swedish form of AIP
porphyria.
The subject committed homicide in an acute attack of porphyria.
The subject died from the disease 7 days later.
SOURCE:
Homicide in acute porphyria.
Trafford PA.
Forensic Science
1976 Mar-Apr;7(2):113-20
+++++++++++++++++++++
When chronic pain intrudes on your life, you may find yourself overwhelmed by
intense, often negative, emotions.
Panic, grief and anger are just a sampling.
Like the pain that spawns them, these emotions can linger and transform you
into a different person. A person you don’t like. A person no one likes.
SOURCE:
Mayo Clinic Medical Staff
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Anxiety
+++++++++++++SEE ALSO “Porphyria Facts: ANXIETY”
++++++++++++++++++++++++++++++++++++++++++++
Anxiety is often present.
SOURCE:
Psychiatric symptoms of inherited metabolic disease.
Estrov Y, Scaglia F, Bodamer OA.
Department of Psychiatry
University of California, San Diego
Journal of Inherited Metabolic Disease
2000 Feb;23(1):2-6
+++++++++++++++++
Having a chronic disease such as porphyria can seem hopeless at times.
Often others unfamiliar with the disease add to the feeling of hopelessness that
is felt.
This sense of hopelessness can cause an acting out.
Often anger is expressed.
Acting out is the expressing emotional conflict or stress through behavior and
actions rather than reflections or feelings.
Bizarre behavior is often associated with the acute porphyrias.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
Rochester, MN
+++++++++++++++++++
Acting out
Acting out or expressing emotional conflict or stress through behavior and
actions rather than reflections or feelings, can occur during the mental changes
that occur during acute attacks.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++++
Adjustment disorder
Often porphyria patients are characterized by medical professionals
as having an adjustment disorder due to the heightened psychological state the
porphyria patients expresses during times of extreme physical pain or when
experiencing the onset of acute attacks.
Adjustment disorder however is a term that describes a true psychological
condition rather than a transient condition associated with porphyria and chronic
pain. Rarely is adjustment disorder found in true porphyria patients.
In either sense however it is a psychological response to an identifiable stressor
that results in the development of emotional symptoms, such as anxiety.
It can also be related to depression or certain conduct, that are greater than
would be expected by the stressor or that cause significant impairment in
functioning.
It is important for acute porphyria patients to remember that bizarre behavior can
be expressed during manifestations of porphyria and extreme pain.
Such behavior howeveris not a permanent psychiatric condition, but that of the
CNS mental change commonly associated with changes in a metabolic disease
such as porphyria.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++++++++++
There are healthful ways for dealing with anger.
There are also healthful ways to combat the inevitable and understandable
negative emotions that porphyria patients often experience.
Learning to deal with emotions which include the bizarre behavior fostered by
anger and anxiety, one can have every reason to expect that to develop a
stronger character and improve one's relationships.
A porphyria patient can also become more effective at managing their pain
which is often a trigger along with the bodily chemical changes that occur with
acute porphyria.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++
When an acute porphyria patient is esxperiencing mental change associated
with acute attacks or when a porphyria patient is experiencing intense pain from
PN, behavorial change will often occur.
Changes in your character, expressed through your words and actions, can
damage your sense of self-worth and your relationships. Often undirected and
often unexplainable anger will take place.
These emotions also can produce changes in your body that sap your energy
and intensify your pain.
SOURCE:
Elizabeth Young
Behavior Therapist
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Affect
In psychological terms, an "affect" is a current, observable state of feeling or
emotion, such as sadness, anger or elation.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++++++++++++
The medical term "affect" is sometimes used in clinical charting of porphyria
patients.
Affect, in its true psychological defintion defines that of a patient in their current,
observable state of feeling or emotion, such as sadness, anger or elation.
Often affect is noted when a person displays undue anger, cries, or is overly
excitable, all which can be a part of the psychoiloguical/emotional roller coaster
that acute porphyria
patients can display when experiencing a flare of their porphyric
symptomology.
SOURCE:
Robert Johnson MD
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Anger
Anger can be defined as the combination of bodily tension and the view of the
world as insulting, assaulting, frustrating, unfair and/or irritating.
Anger associated with metabolic disease such as acute porphyria can become
unrelenting due to how others view our worth in terms of our inability to cope
with chronic pain and acute episodes of a disease they do not understand.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++++++++
With porphyria often one’s own family members do not understand the disease
process and misunderstanding occurs which in time often manifests into anger.
The porphyria patient needs to look beyhond the immediate family group to find
understanding supportive networks.
Often it is advisable to seek counseling with professionals who are
knowledgeable of porphyria and the associated problems of the disease.
SOURCE:
Robert Johnson MD
++++++++++++++
Anger: Normal vs Pathological
Normal anger is the emotion that each one of us has.
Normal anger is when we have bodily tension and we are viewing the world as
either assaulting, insulting, frustrating, irritating and/or unfair.
Pathological anger is when that anger lasts too long, is too intense, is too
frequent, and/or distrubs relationships and work.
Pathological anger thus is chronic anger that causes damage to the person and
others.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++++
It is important to understand what leads to one's anger.
Furthermore it is even more important to look at ways to deal or cope with the
anger.
Understanding your anger, having empathy, learning to use positive self-talk,
relaxation skills, use of humor, time-out proceedures, assertiveness training,
communication of feelings, problem solving and the closing of doors on the past
or forgiveness are keey tools for dealing with anger.
The challenge is finding which techniques work best for you and applying them.
In porphyria it is essential to deal with anger, anxiety and stress which are all
interrelated and associated with porphyria and the pain of neuropathy.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++
Managing your anger, practicing positive thinking, challenging your expectations
and learning to assert yourself all will have a positive effect on your self-esteem.
As you learn how to control and express your emotions, you’ll feel better about
yourself and more confident in your abilities, and your self-image will improve.
All aspects are most important to have in control when dealing with the ongoing
stress, anxiety and relentlessness of acute porphyria.
SOURCE:
Robert Johnson MD
+++++++++++++++++
Anger can be defined as the combination of bodily tension and the view of the
world as insulting, assaulting, frustrating, unfair and/or irritating.
SOURCE:
Nora Rafael MNS
Neuropsychiatric
+++++++++++++++
Anger associated with metabolic disease such as acute porphyria can become
unrelenting due to how others view our worth in terms of our inability to cope
with chronic pain and acute episodes of a disease they do not understand.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++++
Anger: Normal vs Pathological
Normal anger is the emotion that each one of us has.
Normal anger is when we have bodily tension and we are viewing the world as
either assaulting, insulting, frustrating, irritating and/or unfair.
Pathological anger is when that anger lasts too long, is too intense, is too
frequent, and/or distrubs relationships and work.
Pathological anger thus is chronic anger that causes damage to the person and
others.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
====================
The first step in ridding yourself of undue anger is knowing that you have a
habit. A simple, but true saying.
The first step is becoming more aware of what is making you angry and then try
to find other ways to deal with the situations rather than getting angry.
A porphyria patient should look at how much irritablity they have, if they are
experiencing recurrent insomnia, and how tired and how stressed one is each
day.
When a porphyria patient is tired, sick or just stressed, the person will tend to
get angry much quicker.
The challenge for the porphyria patient is to become more aware of how they are
coming across and to take care of themselves.
For many porphyria patients this means separating themselves from others and
get quality rest and in some cases needed iv infusion especially if electrolytes
have been lost.
SOURCE:
Robert Johnson MD
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Behavorial change
Behavioral changes, can be associated with acute attacks.
Such changes can include agitation, anxiety, and anger.
SOURCE:
Meditext Informational Systems
Disease Index
Porphyria
1999
+++++++++++++
Behavorial changes in acute porphyria patients are often seen during the onset
of acute attacks.
Such behavorial changes include hallucinations, seizures, paranoia, anxiety,
disorientation and confusion.
SOURCE:
Robert JOhnson MD
Internal Medicine
++++++++++++++
Behavioral therapy
The application of modern theories of learning and conditioning in the treatment
of behavior disorders
++++++++++++++++
Counseling
Counseling is often ideal for porphyria patients with chronic pain which often
gives way to undue anxiety and anger.
Anger can become a habit.
SOURCE:
Anita Adams PhD
Counseling & Guidance
++++++++++++++
The first step in breaking a habit is knowing that you have a habit.
A simple, but true saying.
The first step is becoming more aware of what is making you angry and then try
to find other ways to deal with the situations rather than getting angry.
You also may want to look at how tired you are or how stressed you are each
day.
Should you be tired, sick or just stressed, you will tend to get angry much
quicker. During acute attacks anger is usually foremost along with confusion and
other bizarre behavior usually not associated
with the patient during remission.
The challenge is to become more aware of yourself and to take care of yourself.
SOIURCE:
Marilyn Simpson LCSW
Neuropsychiatric
+++++++++++++++++
Manifest
Manifest means being the part or aspect of a phenomenon that is directly
observable: concretely expressed in behavior.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++++++++
The medical term "affect" is sometimes used in clinical charting of porphyria
patients.
Affect, in its true psychological defintion defines that of a patient in their current,
observable state of feeling or emotion, such as sadness, anger or elation.
Often affect is noted when a person displays undue anger, cries, or is overly
excitable, all which can be a part of the psychoiloguical/emotional roller coaster
that acute porphyria patients can display when experiencing a flare of their
porphyric symptomology.
SOURCE:
Robert Johnson MD
++++++++++++++
Passive behavior
Passive behavior, porphyria, and chronic pain can be a dangerous combination.
When you continually give in to the wishes of others — at your expense — your
frustration can grow, your self-esteem erode and your pain increase.
All too often this all adds up to expressing undirected anger.
Bizarre behavior due to mental change associated with porphyria is usually
short term during acute attacks.
However when there is chronic unrelenting neuropathic pain, it is most
necessary for a porphyria patient to seek pain management and counseling
for excerbations of various psychological aspects that remain after an attack has
gone into remission.
SOURCE:
Robert Johnson MD
+++++++++++++++
Self-image
With porphyria and chronic pain a porphyria patients can result in some
damaging blows to self-image.
Some of these are self-imposed, such as inability to measure up to one's own
expectations.
Others may come from family, friends, colleagues or even strangers.
Worst of all is the damage done by medical professionals who because of their
own lack of knowledge or inability to treat a porphyria patient all too often resort
to labeling such patients with tags such as "mental" or "drug seeker" or
Munchausen's.
Perhaps they criticize or ignore you because you don’t meet their standards or
because you look haggard from your struggle with pain.
Porphyria patients need to be strong individuals and well informed of their
disease and build a strong support group where they can build self esteem and
to where they can turn when they have low periods from time to time.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
+++++++++++++++++
Self worth
It is most important for porphyria patients to maintain a strong sense of
self-worth.
The better a porphyria patient feels about themselves the better the person will
take care of their over all well being.
A strong sense of self worth also goes a long way in helping to overcome anxiety
and stress which often turns into undirected anger and frustration and then
depression.
In addition, a positive self-image has been linked to a stronger immune system
which goes a long way in helping a porphyria patient which is often lacking in
physical well being due to anxiety, stress and lack of beneficial rest. So feeling
good about yourself may actually improve your health.
SOURCE:
Dr,. Kenneth Carlson
Neuropsychiatric
+++++++++++++++++
A study in the August 2002 issue of Mayo Clinic Proceedings reports that people
who expect misfortune and who only see the darker side of life don't live as long
as those with a more optimistic view.
Researchers evaluated results from a personality test taken by participants more
than 30 years ago and compared them to subsequent mortality rates.
They found that people who scored high on optimism had a 50 percent lower risk
of premature death than those who scored more pessimistic.
Besides a lowered risk of early death, researchers found other health benefits
related to positive attitude. In the study, optimists reported:
Fewer problems with work or other daily activities because of physical or
emotional health
Less pain and fewer limitations due to pain
Less interference from physical or emotional problems when engaging in social
activities
Increased energy
Feeling more peaceful, happier and calmer
SOURCE:
Mayo Medical Education
Mayo Clinic
++++++++++++++++
Studies show that one's personal outlook on life can influence your physical
health.
Personality traits — such as optimism or pessimism — can influence how well a
person can live to a large degree even how long a person can live.
Porphyria patients have toi learn how to deal with an ugly disease of which little
is known, and which can be life threatening ifunwise choices and decisions are
made by both the medical provider or the paytient themselves.
Learning to be a positive person and being firm in your convictions as well as
being knowledgeable about your disease are very essential to managing
porphyria and living a full life. One does not have become handicapped by
porphyria.
SOURCE:
Robert Johnson MD
+++++++++++++++
Because of on-going pain, stress and anxiety, there may be days when your
self-esteem could use a little energizing.
When that happens, consider these suggestions:
Structure your day with goals you can meet.
When the day is done, you’ll feel a sense of accomplishment.
Talk with a friend.
Having someone who’s willing to take time to listen to you lets you know that
you’re valued.
Spend time with others.
It will make you feel more connected and less alone.
Help someone.
It reminds you that your life makes a difference.
SOURCE:
Mayo Medical Education
Rochester MN
++++++++++++++++
++++
Delirium is a sudden change in how well a person's brain is working (mental
status).
Delirium can cause confusion, disruption of the sleep-wake cycles, and unusual
behavior.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++
+++
In porphyria there can be bizarre behavior. Such behavior can be psychotic.
Other bizaare behavior can incliude Delusions or hallucinations that cause
disorganized thinking, unusual behaviors and loss of touch with reality.
SOURCE:
Dr. Kenneth Carlson
Neuropsychiatric
++++++++++
Behavioral changes, can be associated with acute attacks.
SOURCE:
Meditext Informational Systems
Disease Index
Porphyria
1999
+++++++++++
The porphyrias are emotionally stressful.
SOURCE:
Porphyria Resources
United Medical Services
1996
+++++
AIP patients may have central nervous system signs consisting of mental
status changes,
SOURCE:
Medicine Journal
February 22 2002
Volume 3, Number 2
+++++++++++++++++
Mental status changes can occur in acute intermittent porphyria.
SOURCE:
"Acute intermittent porphyria"
Thomas G DeLoughery, MD
Associate Professor
Department of Medicine
Division of Hematology and Medical Oncology
Oregon Health Sciences University
Portland, Oregon
++++++++++++++
Behavorial change and bizarre behavior are epxerienced by 56% of acute
porphyria patients.
SOURCE:
United Health Services
Medical Education Department
1999
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