After two years of becoming paralyzed, I started to
experience pounding headaches, goose bumps, and nausea every time I
would get a Urinary Tract Infection (UTI). At this time, I could
urinate on my own through a Texas Catheter that went into a bag
attached to my leg. UTI’s are common upon the disability community,
but I would get them once a month. With every UTI, I would expect a
pounding headache to accompanying the infection, which is a package
deal I would rather not have. Let me explain what the pounding
headaches would feel like, if I can describe it with words. I have
never had a migraine, but some people explain that a migraine has
excruciating pain. The pounding headaches start from the back of
the skull and pound with every beat of my heart. This condition is
life threatening and needs to be addressed immediately. The
condition is called Autonomic Dysreflexia (AD) or referred to as
Hyperreflexia.
Autonomic Dysreflexia (AD) is a potentially
dangerous condition related to spinal cord injuries. To understand
this condition, mentally picture a garden hose and a person either
kink’s the hose or put your finger at the end of the hose to stop
the water flow or shorten the stream. Now think of the garden hose
as the blood vessels and this is what happens to a person whom has a
spinal cord injury. My injury to my spine is Cervical 5 and 6
(C5-6), which is just about in the middle of my neck. To get a
clearer understanding put your finger in the middle point of your
neck, between the base of the skull and the end of the neck, and you
can feel the C5 and C6 area of the spine. If anything below the
injury of my C5 -6 areas are being invaded like pressure soars,
urinary infection, bowels, or even something simple as an ingrown
toe nail or a wrinkle in the bed sheet will cause a meltdown in
communication between the spine and the area in trouble. Remember
the garden hose example and the kinking of the hose? Think of your
blood vessels as the hose, so when communication in the spine and
brain is blocked, this causes the blood vessels to constrict and
raise the blood pressure. The blood pressure rises to 200 over 100
and mine has been as high as 200 over 120, which is in the dangerous
zone of a stroke. My blood pressure runs low, around 90 over 60, so
with the blood pressure shooting up and blood vessels constricting;
the result are a pounding headache, goose bumps, face flushing, and
being nauseated.
The frightening aspect about AD is most doctors
are not familiar with this condition, especially family and
emergency room doctors. Doctors might tell you they know what AD is
but you can tell if they know by the expression on their face and
their reactions. If doctors are not familiar with AD then how do
they know how to treat this condition? This is where you come in as
being educated about AD. I wanted to write this column about
Autonomic Dysreflexia to educate every reader about what to do if
symptoms occur and how to inform your doctor. I went through many
family doctors and emergency room doctors before finally doctors’
started to take this condition seriously. If you have had any
experience with doctors, then you might know some doctors do not
like being told what to do and how to do a procedure. At least this
is my experience with many doctors. I am not a doctor or educated
with any value in the medical field, but I do offer experience which
is sometimes a value that cannot be replaced by any degree. I am
not saying anything bad about doctors, but many are set in their
ways. I have found that new doctors from either residency or
graduation are being educated more on AD.
Symptoms
A few symptoms of Autonomic Dysreflexia are
again: pounding headache, goose bumps, sweating, flushing in the
face, red blotches above the spinal cord injury, stuffy nose and
nausea. Every one is different and unique, so a person may not have
all the symptoms. For example, I cannot sweat due to my disability,
so I do not have any sweating symptoms, but I do get very hot.
Causes
A few causes of AD are Urinary tract infections,
pressure sores, obstruction of a catheter and bowels, sexual
stimulation, ingrown toe nail, and a wrinkle in a sheet. The
wrinkle in the sheet is most likely due to no feeling and the sheet
is some how giving a bad sensation. In summary, the causes are of
any stimuli below the injury of the spine.
What to Do
What you should do if you are experiencing
Autonomic Dysreflexia? If you feel your blood pressure is high sit
up and do not lie down. Blood pressure typically goes up when a
person is lying down. If you have a personal care assistant or an
automatic machine take your blood pressure. A person needs to find
out why AD is occurring and stop it immediately. The reason I get
AD is usually because of UTI’s, so I know to get to the hospital and
get an indwelling catheter inserted inside. Remember me telling you
that I could urinate on my own, well; now I cannot because all the
Bladder infections and UTI’s led me to kidney failure, more about
this in a moment. Again, find what is causing AD and the cause is
the only way to stop it. Check your catheter for kinks or blockage,
bowel irritation or blockage and are there any clothing too tight.
There will be a link to full causes and symptoms of Autonomic
Dysreflexia or do a Google search.
How to inform your doctor:
How to explain AD to doctors who are not
familiar with the condition? If you go to the hospital, you might
have already found the cause and you did not know it. Your blood
pressure could be back to normal. Here are a few suggestions when
speaking to the Emergency room doctors’. Ask the doctor if he or
she is familiar with the condition Autonomic Dysreflexia. If you
cannot remember the name, explain to the doctor what type of injury
you have and you are experiencing pounding headaches due to lack of
communication because of your injured spine. I carry a print out
card in my wallet that doctors can read and I had the hospital and
family doctor put the information in my medical files. I would
suggest the same for you, because depending on the amount of pain
you are experiencing, you may not be able to describe or communicate
what you are feeling. Try not to demand the doctor to do this or
that because many doctors have a set way and do not like a patient
diagnosing him or herself. If the doctor totally ignores your
suggestions and explanations of your symptoms, ask a nurse to do a
search on the computer about Autonomic Dysreflexia. Nurses can be
more compassionate and have more patients then the doctors. If you
are explaining AD to your family doctor, set up an appointment with
a longer appointment time. Have you noticed sometimes doctors can
rush you in and out of the examining room? The reason is most
doctors usually allow fifteen minutes a patient. Call your doctor
ahead of time and ask for a longer period to see him or her. Many
doctors will do this for their patients. Plan ahead for your
appointment and be prepared to explain to the doctor about AD. If
you have to write down a web site address, then give the site to the
doctor. I would suggest the doctor put the information about
Autonomic Dysreflexia in your file at the office and the hospital
file.
I had the pleasure to interview Dr. Deborah
Lightner, from the Mayo Clinic, who is an Urologist with an
experience and specialization on Neurology. Dr. Lightner has been
in the Urology Field since 1987. As an expertise in her field, Dr.
Lightner recommends a person with a spinal cord injury to see an
Urologist, with a Neurology background, on a regular basis. Dr.
Lightner went on to explain that family doctors and emergency room
doctors are not familiar with Autonomic Dysreflexia. According to
Dr. Lightner, “The bladder is an unreliable witness”, so do not
assume you are emptying your bladder like I thought before kidney
failure. Dr. Lightner could not express enough that this is a
medical condition that needs attention right away. I asked Dr.
Lightner, “What is the highest blood pressure you have seen with
Autonomic Dysreflexia” and she told me, “I have seen strokes”. I
was amazed, so I asked her again, “Strokes with spinal cord” and she
replied “yes”. Dr. Lightner suggested carrying the Autonomic
Dysreflexia information card with you, so you can show the doctor.
Dr. Lightner went on to explain that not only does the blood
pressure go up, but the heart rate will go down. A person with a
spinal cord injury may have a low blood pressure that is normal for
him or her. For example, a person with a spinal cord injury could
have a norm blood pressure of 90 over 60, this is my example. Dr.
Lightner informed me with a person who runs a low blood pressure
could experience AD with the high number of 150. In other words, my
blood pressure runs 90 over 60, I experience AD anytime mine goes
beyond 120 as the high number. I have starting experiencing the
pounding headaches and took my blood pressure and my pressure was
120 over 90. Usually the blood pressure is not what typically needs
to be treated but the stimulus has to be stopped, like a broken
bone. Dr. Lightner explained to me that a person can break a bone
below the injury and experience Autonomic Dysreflexia. My interview
with Dr. Deborah Lightner was a delight and informative for me and
hopefully will inform everyone who reads this column. I would like
to thank Dr. Lightner for the interview and a special thanks to John
J. Murphy of Mayo Clinic Public Affairs for the setup of the
interview. For more information on Autonomic Dysreflexia and other
important spinal cord information, please visit:
www.mayoclinic.org.
In summary, I would like to explain a few things that
happened to me. For the first 15 years of my injury, I thought I
was urinating on my own, but I was not. I was having bladder spasms
to give me the deception that I was empting my bladder. Over the
years, my bladder became enlarged and urine backed up into my
ureters and to my kidneys. The ureters connect your kidneys to the
bladder. I went through kidney failure because of lack of knowledge
and not seeing an Urologist on a regular basis. Now the kidneys are
under control, but the ureters are still a twisted and dilated. I
have to check my blood levels on a regular basis to make sure the
kidneys are working properly. Now I have to catheterize
intermediate every four to six hours. The conditions and
complications could have been prevented, if I only took better care
of myself and have been educated about disability issues and medical
conditions.
Dr.
Deborah Lightner (2007). Mayo Clinic. -
John J. Murphy (2007). Mayo Clinic Public Affairs. Mayo Clinic.
www.mayoclinic.org -
The information above is courtesy of the Spinal Cord Injury
Information Pages.
http://www.sci-info-pages.com/index.html -
For more information, please visit:
http://www.spinalcord.org/html/factsheets/aut_dysreflexia.php
