Stimulants: A Way Out of Pain
By Patricia Stephens
To my knowledge,
there is no medical documentation that links
stimulants with pain relief. Not only did the
right combination of attention deficit disorder
medications eliminate my pain, but it also
smoothed out the operation of so many other
bodily functions. Many others in my fibromyalgia
support group have responded positively as well.
(Recently, we have found documentation. Look at
the reference on the last page in "Fibromyalgia:
A New Perspective".)
Heart-Hormone Relationship
In order to try to
make sense of some of this, I tried to put some
things together that I had learned from various
specialists. A couple of years ago I was having
major hormonal changes so I went to Emory Clinic
to seek the advice of one of their
endocrinologists. I also had been having a real
problem with heart palpitations. Interestingly
enough, these medicines quieted the heart
palpitations. There is a long list of heart
problems in my family, so I wondered how the
heart played into it all. I did ask this doctor
if the hormones controlled the heart or the
heart controlled the hormones, and she said
"some of both". At first I thought it was an
obscure answer, but the more I thought about it,
I could envision a circle of interaction between
the heart and hormones. It seems to me that if
there was a "glitch" in either system it could
affect the other. When all my endocrine tests
came back normal, I began to pursue more
information.
Attention Deficit Disorder-Fibromyalgia Connection
I then saw an
Adult ADD specialist and researcher at Emory
Clinic in Atlanta. She sent me a questionnaire
on ADD and I was amazed at how clearly this
survey described me. It addressed much more
than lack of focus and attention which was just
a part
of the disorder.
Strangely enough, there are many people with ADD
who are highly intelligent and educated. Some
make it through medical school, and yet others
never make it out of high school. On this survey
I could see many of the fibromyalgia symptoms.
This doctor also confirmed the ADD diagnosis. I
knew that FMS patients have a lack of blood
flowing to the frontal lobes of the brain and I
had read that ADD patients did as well, which
the doctor confirmed. She also told me there
was not only a lack of blood flowing into the
frontal lobes but into other areas of the brain
as well. I began to wonder if these other areas
could not account for the differences in our
list of symptoms. Most ADD patients do not have
the pain, at least not to the degree that those
of us with FMS experience. The doctor who
originally diagnosed me with ADD told me she was
having many of the FMS symptoms before getting
her ADD diagnosis. She also mentioned that if
she had gone to a different doctor, she very
likely would have ben given the FMS diagnosis
instead of the ADD one. There just doesn't seem
to be any "cookie cutter" look to all of this.
Questions About the Heart
Next on my agenda
were questions about the heart that remained
unanswered. I began to ask more questions and
the answers I was getting fueled the fires of
curiosity. My feelings seemed to tell me that
because medical science did not have the answer,
it was all right for a layman to take a look. A
nurse in our support group encouraged me to do
some research in our hospital's library and
explained the information available on MEDLINE.
This is a computer data base resource used
primarily by the medical profession. It concerns
various medical issues and research from around
the world.
Because I have no medical training, and was
having cognitive problems, I wondered what I was
doing in a medical library; so I prayed and
asked God to show me where to look and what to
see. Because I knew I had a lack of blood
flowing into the frontal lobes of the brain
(from a SPECT scan done by Dr. James Mountz, the
Fibromyalgia researcher in Birmingham), and I
had been diagnosed with mitral valve prolapse, I
wondered if there was a connection. Because I
am living with this disorder, maybe I could see
something that the researchers had missed.
A word to medical professionals who might be
concerned after reading this: please understand
that my interpretation of what I have read may
not be exact in every case, and in no way do I
want to cause others to draw wrong conclusions
from anything I have read or written. My goal
is to ask some new questions and to see if
others with FMS meet ADD criteria. If they do,
stimulants may relieve their pain and would,
indeed, tell modern medicine something that we
don't already know about the transmission of
some types of pain. I believe we haven't been
asked the right questions and most of us fear
that if we were asked the right questions, who
would believe us? I also believe that because
specialty medicine is really not set up to work
together to find answers for complex disorders
that overlap specialties, patients need to look
for ourselves and pool our knowledge. Why not?
A Layman's Perspective:
My first stop was
our hospital's medical library. Because of the
hormonal-heart symptoms I had been having, I
cross-referenced heart and hormones on MEDLINE.
I was amazed at what I found. Many of the
chemicals that kept coming up were dopamine,
norepinephrine, and serotonin. I also saw an
article referring to dopamine receptors in the
human heart and I wondered about the circle of
interaction between dopamine receptors in the
brain and those in the heart. If the heart was
not pumping enough blood to the brain, would the
neurotransmitters that were released stimulate
the heart?
From my reading on the endocrine system,
dopamine is released in the hypothalamus, along
with growth hormone release factor which sends
growth hormone to the pituitary, which dumps it
in to the blood stream. Another article stated
that when
the heart no longer pumps blood adequately it
may be treated with an unlikely drug: human
growth hormone. In a preliminary study, the
hormone was shown to strengthen the heart
muscle. Something else of interest was the fact
that stimulants provide increased dopamine,
which increases brain activity and blood flow to
the brain.
Another thought that came to mind was a
temporary form of depression, which is
postpartum depression. During pregnancy, blood
volume increases by 50%, cardiac output
increases as much as 60-80 %, and the endocrine
system fluctuates. After delivery, this
temporary form of depression, that affects so
many, goes away; but for some of us, this seems
to be a vulnerable time to acquire FMS. Another
time when our hormones are fluctuating is
menopause. Another source says that one
remarkable thing about the endocrine system is
the way the hormones interact. Hormones
produced by one part of the body can influence
hormonal secretions elsewhere. I wondered if
certain irregularities in the heart would fail
to stimulate the endocrine system, which sets
off that intricately timed release of
neurotransmitters. Why did our bodies function
rather normally for part of our life, and then
suddenly be thrown into complete chaos? If
there is a fault in our heart from birth and
something causes it to give way, such as a
hormonal event, could that not precipitate the
problem? (Just thinking on paper)
Similarities Between Mitral Valve Prolapse Syndrome and Fibromyalgia
As I began to
study mitral valve prolapse, I learned there was
a MVP syndrome which looked curiously like FMS.
After reading a patient survey on this syndrome,
I could see a large overlap between these two
disorders. MVP syndrome symptoms are: Chest
pain, palpitations or irregular heart beat,
migraine headaches, anxiety, depression, panic
attacks, shortness of breath, neck pain, feeling
hot or cold (not related to external
temperature), pain or swelling in arms, legs,
hands, or feet, difficulty sleeping, backaches,
intestinal or stomach trouble, difficulty in
urination, numbness in any part of the body,
fainting spells, visual disturbances, chemical
sensitivities, skin troubles or rashes, muscle
fatigue or weakness, excessive gas, bowel
trouble, allergies (primarily yeast), and
trouble concentrating or memory problems.
One of the articles that was of interest was one
on a relationship between temporomandibular
dysfunction and mitral valve prolapse. Because
of intense pain in this region, I have had 3 TMJ
surgeries. (Ironically, the surgeries did not
relieve the pain, but the stimulants did.)
Sixty percent of all mitral valve prolapse
patients complain of headaches and forty to
sixty percent of patients have anxiety-related
problems. (These percentages were astounding!
Many of these patients have esophagitis. That
may explain why some patients have chest pain.
Many FMS patients struggle with this symptom as
well. MVP syndrome also has a sudden onset,
usually reporting that some event, physical or
psychological, precipitates it. MVP has a strong
hereditary tendency and is thought to be
inherited as a dominant gene. Another article,
based on a weekly check list of symptoms from
the MVP syndrome, states that the greatest
increase in patient's symptoms occurred during
their menstruation, times of high stress, or
exercise.
Mitral Valve Prolapse Inconsistencies
I also read many
articles that referred to the difficulty of
getting an accurate mitral valve prolapse
diagnosis because the disorder is consistently
inconsistent. Each patient with MVP syndrome is
different, and although there are numerous
similarities, no two people exhibit exactly the
same set of symptoms. Symptoms vary from hour to
hour, day to day, or week to week. (This sounds
curiously like FMS and the majority of us have
MVP.) Because our symptoms vary from day to
day, couldn't something in the body that is not
consistent be a questionable cause? During the
echocardiogram, which is the most often used
diagnostic test, most patients are lying down.
However changing the position of the body, such
as squatting or sitting up, can show a totally
different response to the test. I wondered how
many technicians just tested while the patients
were lying down and didn't go any further. What
if we were tested on a good day? Would a
one-time look be conclusive enough to get the
whole picture? According to Dr. Cheng, "mitral
valve prolapse can be a dilemma for physicians.
At one extreme the manifestations can be so
mysterious as to baffle even a Sherlock Holmes.
At the other extreme, the diagnosis can be so
simple that a computer can render it accurately.
Even when the diagnosis is clear, questions
remain. Even with all of the echocardiographic
modalities at our disposal (e.g.. M-mode,
two-dimensional, and Doppler), the correlation
between positive findings and accurate diagnosis
is not all that good." If this is true, what
level of accuracy is present in research that
has tried to tie MVP or disregard MVP in
relationship to various physical or
psychological disorders? How do you measure
something that moves? Another problem that
exists is the lack of a gold standard by which
to define MVP. In one study, 15 echocardiograms
were read by cardiologists from two university
centers. The first reader found a prevalence of
60% definite and probable MVP, while the second
reader found no definite and one suggestive
case. A combination of a good clinical exam
(including family history interview),
echocardiographic findings and serum
catecholamine levels could provide more accurate
diagnosing. (It is interesting to me that
abnormal serum catecholamine levels have been
used in association with MVP and depression.)
Similarity of Medications
One of the things
that I found most interesting in this study was
the kind of medications used for the MVP
syndrome. They are antidepressants, beta
blockers, calcium channel blockers, and
anti-anxiety medications. It is also curious
that Cardiology diagnoses and treats mitral
valve syndrome, Rheumatology diagnoses and
treats fibromyalgia, Psychiatry diagnoses and
treats attention deficit disorder. All are using
basically the same range of medications. I wish
they would sit down at the table and swap
stories! There also seems to be an inherited
factor in all these disorders.
Memory Impairment
Another
interesting association was information on
cognitive impairment in the Fibromyalgia Network
publication. Patients with chronic fatigue
syndrome (thought to be one and the same as FMS)
don't make memories as efficiently as control
subjects. They have memory consolidation
problems, their concentration is easily
interrupted by distractions, and they readily
lose their train of thought. They have
inefficient mental scanning speeds, taking more
time to retrieve data stored in their memory
banks. Also, many of us are prone to have
problems relaxing. (This has been a lifetime
problem for me.) Most people with FMS are
constantly idling at 35 mph. Even though they
are not doing anything, their minds are racing.
They are listening to TV, writing, and thinking
about the three projects they're involved in.
Most of us have six balls in the air at the same
time. These are attention deficit disorder
symptoms that may have been present long before
noticing most of the symptoms in the FMS and MVP
syndromes.)
Echocardiogram Testing
My echocardiogram
confirmed mitral valve prolapse with trivial
mitral regurgitation and trace tricuspid
regurgitation, which is usually not a serious
problem. Some have MVP and don't know it.
Others have it and are without symptoms directly
related to the heart. One interesting source
referring to symptomatic MVP said that, with the
exception of heart failure, the severity of the
symptoms seems to have little or no relation to
the severity of prolapse.
Exercise
Major problems for
FMS patients are low energy level and pain,
which make exercise difficult. However,
exercise may improve symptoms as long as it is
not overdone. I have built up to a three mile
aerobic walk per day. If I add any physically
demanding work or exercise over and above that;
my heart palpitations, chest pain, and FMS
symptoms increase dramatically. It takes
several days for the symptoms to subside. It is
interesting to me that my medications will
"corral" the symptoms as long as I don't
overexert.
Blood Flow to the Brain
In view of the
fact that FMS and ADD patients both have a lack
of blood flowing
into the frontal
lobes, I found something else of interest. A
study which shows a decrease of blood flowing
into the brain was done using an exercise
bicycle, to produce stress to the body to see
how FMS patients responded. Normally, exercise
causes an increase in temperature, cortisol
production, growth hormone production,
catecholamine levels, and cerebral blood flow.
None
of these increases
occurred in FMS patients and cerebral blood flow
decreased
with exercise, the
opposite of what you would expect. In patients
with MVP without regurgitation at rest, exercise
provokes mitral regurgitation in 32% of
patients. The thought occurred to me if exercise
could induce regurgitation in some, could that
not create a lack of blood flowing to the brain,
possibly due to a lack of pressure? Would this
in turn cause endocrine disturbances?
Serotonin
Another miscellaneous finding that was curious to me was the effect serotonin has on the arteries. A report states that in patients with normal coronary arteries, serotonin causes a dose-dependent increase in coronary blood flow, as well as an increase in the diameter of the coronary artery where the amine was infused. Why does serotonin affect the arteries, and would that foster emotional as well as other changes throughout the body?
Mitral Valve Prolapse Following Medications
There is another
study that indicates that patients who tested
positive for MVP were given benzodiazepines,
tricyclic antidepressants, and other similar
medications. When testing these patients after
drug therapy for a given period of time, a large
percentage of them showed no sign of prolapse.
Recently, I had a transesophageal echo that
showed no sign of MVP, even though it had been
confirmed earlier. What is it about these
medications that give them the power to
eradicate MVP completely in many? What are these
medications doing to the heart?
Mitral Valve Prolapse
Could the importance of the mitral valve or
other contributing factors have been overlooked?
There is plenty of literature that speaks to the
benign (not serious) nature of the problem and
very little information in the professional
literature about the complexity of symptoms. In
addition, several rather prominent authorities
in the field of cardiovascular pathology do not
believe that the symptoms have any basis other
than in the patient's mind. Maybe it is a benign
condition for many; but if there is something
important here, would the medical community be
"inoculated" against looking at it from a fresh
perspective? It is my understanding that mitral
valve prolapse can not be surgically corrected,
nor is it
improved by valve replacement. So what causes
the valve to prolapse? Maybe it is triggered by
some other structural abnormality in the heart.
There are many other abnormalities that have
been linked with MVP such as ruptured chordae,
atrial septal
defects, ventricular septal
defects, bicuspid aortic valve defects,
persistent ductus arteriosus, tetralogy of
Fallot, Ebsteins anomaly, unusually large
eustachian valves, and others.
Conclusion
My goal in
writing this is to collectively look for the
road to healing. If attention deficit disorder
medications bring benefit to others, as they
have for me and other members of my support
group, we need to band together and ask why. I
wish that I could bring you answers; instead I
raise questions.
References
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1. Cowles T, Gonik B. Mitral valve prolapse in
pregnancy. Seminars in Perinatology,
14(1): 34-41, 1990.
2. Bowen R, DArcy C, Orchard R. The prevalence
of anxiety disorders among
patients with mitral valve prolapse
syndrome and chest pain. Psychosomatics
32(4):400-406, 1991.
3. Hurst J, Schlant R, Rackey C, Sonnenblick E,
Wenger N. The Heart.
McGraw-Hill Publisher, Health Professional
Division, 304,1466, 1990.
4. Fazio S, Sabatini D, Capaldo B, Vigorito C,
Giordano A, Guida R, Pardo F,
Biondi B, Sacca L. A preliminary study of
growth hormone in the treatment of
dilated cardiomyopathy. New England
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5. Amenta F, Gallo P, Rossodivita A, Ricci A.
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Naunyn Schmiedebergs Arch Pharmacol
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