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Nausea, dizziness, weight loss, headaches, vomiting: These symptoms sometimes add up to POTS

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Nausea, dizziness, weight loss, headaches, vomiting: These
symptoms sometimes add up to POTS

It was in August 2007 that Anthony and Francine Pugliese began
taking their daughter, Nina, to an assortment of doctors for an
assortment of symptoms. Then 12, she was nauseated, vomiting,
lightheaded and extremely fatigued. Her heart rate was
increased.

As time went on and no diagnosis was forthcoming, the Jefferson
Hills girl's symptoms got worse.

"She's losing weight; she can't function in school," Mrs.
Pugliese said. "She loves basketball; she was trying to play
basketball, but she would get violently sick after a game."

Victoria Piekut, 15, of North Huntingdon, started struggling
with severe body pain, nausea, lightheadedness, body tremors
and severe headaches she described as migraines back in the
sixth grade, said her mother, Chris. Victoria couldn't stand
for more than a short period. Her symptoms worsened over the
next couple of years as her parents sought medical answers.

Between her junior and senior years at Penn Hills High School,
Julee Catania, now 19 and a sophomore at Washington &
Jefferson College, walked onto a softball field for a game and
started having double vision. "I got dizzy and real nauseous,"
she said.

The symptoms continued, and Julee also went to numerous doctors
and made several trips to emergency rooms without learning why
she was ill.

When he was in fifth grade, now 18-year-old Micah Mason of
Harrison began having headaches and dizziness; throwing up was
a regular part of his morning routine. A search for a diagnosis
was unsuccessful. He began to consider his symptoms a regular
part of his life.

During the 2010-11 basketball season, the Highlands High School
shooting star started losing weight. By Feb. 28, when he went
to the emergency room with an eye infection that left him
temporarily blind in that eye, he was down about 30 pounds. In
early May, he began having hard, erratic heartbeats, and his
legs felt as if he were running through cement.

Then, on May 15, he had his scariest episode while driving with
his mother, Karen, to a tournament.

"He couldn't breathe. He was holding onto me, holding his
chest," Mrs. Mason recalled.

They arrived at the school and went in. "He was white-faced,
his eyes sunken. He went to the bathroom, came out and said,
'Let's go. I need to go to a hospital.' "

Two days later, he finally got a diagnosis at Children's
Hospital of Pittsburgh of UPMC -- the same one the other three
teens eventually got.

They all had POTS, or postural orthostatic tachycardia
syndrome. It also is called orthostatic tachycardia, postural
tachycardia, postural tachycardia syndrome, orthostatic
intolerance and mitral valve prolapse syndrome. Orthostatis
simply means standing upright; tachycardia is an abnormally
rapid heart rate.

It is a disorder of the autonomic nervous system, which
controls involuntary organ functions, and it could affect as
few as 200,000 Americans or more than a million, experts say.
Those numbers vary, in part, because those experts argue about
the causes.

Satish Raj, a cardiac electrophysiologist and preeminent POTS
expert who does clinical research at the Autonomic Dysfunction
Center at Vanderbilt University, offers the following
definition of POTS:

"It is a chronic disorder where patients feel unwell more
acutely when upright and feel somewhat better when they're
lying down and where the problem is not primarily a drop in
their blood pressure when they're upright, but rather an
excessive increase in their heart rate."

According to POTS experts, a patient's heart rate increases by
at least 30 beats a minute when he or she stands.

When Micah Mason had his episode May 15, his pulse rate went
from about 40 -- an excellent rate for a well-conditioned
athlete -- to more than 120 in just a few seconds.

Besides the nausea and dizziness, patients complain of what
they call "brain fog," something Dr. Raj said may have more to
do with concentration or attention than memory; changes in
their vision; increased sweating when standing and exercise
intolerance.

What causes those symptoms?

"In some patients, it may be due to not getting enough blood
flow to the brain while you're standing. You may be OK when
you're lying down," said David Robertson, a neurologist and
clinical pharmacologist who founded and directs the Autonomic
Research Consortium at Vanderbilt.

Why that is the case is not that simple. Dr. Robertson cautions
that "what physicians label as POTS is probably dozens of
diseases. Each disease may have its own characteristics and its
own cause."

In Dallas, Benjamin D. Levine of the Institute for Exercise and
Environmental Medicine, Texas Health Presbyterian Hospital,
believes that deconditioning is frequently the cause of POTS --
stay in bed ill a few days or more and your heart rate will
increase when you finally get up. He is a huge proponent of an
exercise conditioning program as treatment.

Victoria Piekut tried the program last year and felt
symptom-free for the first couple of weeks. Then, her mother
said, she began to dehydrate despite a normal amount of fluids.
Eventually she ended up in a hospital on pain medications and
intravenous fluids.

"That amount of exercise [an hour a day, five days a week] was
too much for her," Mrs. Piekut said. "She couldn't take in
enough fluids. That's kind of the problem with POTS: Everybody
reacts differently."

Dr. Raj said there are many POTS patients in whom low blood
volume, or the amount of blood in their bodies, may be the
underlying trigger for the disorder. The reason for that low
volume is unclear, he said, and he is doing federally funded
research on the question.

And, he said, "there are other patients that we say have
neuropathic POTS." That means there is damage to the peripheral
sympathetic nerves, which normally would stimulate the blood
vessels to tighten and support blood pressure and return blood
back to the central vasculature (blood vessels) and the heart.

"Again, it's not fully clear how that relates to the
tachycardia," Dr. Raj said, "but the thought is that perhaps
the blood vessels in the lower extremities in these patients
don't tighten or constrict as well because of the neuropathy."
Poor blood flow then results in more blood pooling in the legs
and less blood returning to the heart.

The treatments are as varied as the potential causes.

"One of the common strategies is to try to increase blood
volume," said pediatric cardiologist Julian Stewart of the New
York Medical College, the foremost researcher into the
mechanisms of orthostatic intolerance in the young. That's done
with fluids and salt or medication, but, he said, "it can be
difficult to salt-load because it takes a lot of salt, which
can be unpalatable. If you took a patient with POTS and infused
saline, they could do pretty much anything temporarily, but it
does not fix the problem.

"There are medications to make vessels contract. There are
medications that can work on heart rate. Sometimes -- this is
very important -- there are medications that work on aspects of
the nervous system directly," he said. "Steady progress is
being made on the underlying mechanisms of disease."

But Dr. Stewart and the other doctors agreed that exercise has
to be included in any treatment strategy.

At the Mayo Clinic Neurological Center in Rochester, Minn.,
Phillip Low, a professor of neurology, said that in the long
term, exercise is more important than medications in treating
Mayo's POTS patients, some of whom "will tell you it's
important to stay fit because if you lose your level of
fitness, you may have more symptoms. Medications have some
value for the control of symptoms for a period of time.

"We sometimes use medications, but it's mainly exercise and
fluids," he added. "Sometimes we'll give them a beta blocker to
slow the heart down a little bit. That's for the short term,
but we don't rely on it in the long term."

At Vanderbilt, which only sees adult patients, Dr. Raj said,
"we talk to everyone about the importance of exercise based on
the [Qi] Fu and [Benjamin D.] Levine data. Everyone pretty much
gets advised to increase their blood volume by diet, and that
means increasing their salt intake and increasing their fluid
volume." He also uses medications, particularly for low blood
volume.

Julee Catania and Nina Pugliese, who were diagnosed and are
being treated by Hasan Abdallah of the Children's Heart
Institute in Reston, Va., take multiple medications. Julee, who
has started playing softball again, walks and tries to live in
a stress-free environment. Nina is home-schooled and does
cardiac training two or three times a week. When she feels well
enough, she plays basketball on an AAU team.

Neither is back to where she was pre-POTS.

Victoria Piekut, who was diagnosed about two years ago by a
POTS cardiologist in Toledo, Ohio, can't take typical POTS
medications, Mrs. Piekut said. "She has, like, allergic
reactions to almost everything they try." She takes vitamins,
goes to a chiropractor and massage therapist, and takes a
weekly dance class and gym class. Getting up is difficult
because of nausea, so she usually misses her first couple of
morning classes.

"It's still a struggle. She's in the ER or MedExpress every
four weeks for IV fluids," her mother said. "She pumps herself
full of Gatorade; it's not enough. If she were sedentary, it
might be enough."

Micah Mason also had trouble with medical solutions to his
POTS. He couldn't take beta blockers -- they would lower his
already low pulse too much. Mrs. Mason was advised not to
permit him to take medication to raise his blood pressure. He
just got sicker when he tried to increase his salt and Gatorade
intake.

Then his mother heard about a chiropractor who was doing
something called neurologic relief technique, which she
described as the chiropractor applying pressure at the base of
the skull behind the ears with half-pound dumbbells or his
fingers. Robert Corcetti of Monroeville examined Micah and
diagnosed meningeal compression of the spine, a trauma-related
condition which he believes caused his patient's POTS symptoms.

Micah began going for treatments four days a week. Meanwhile,
Mr. Corcetti prescribed natural supplements and two liquid and
one regular meal a day; Micah was pretty much restricted to bed
rest.

Now the treatments are once every week and a half, and Micah is
back playing basketball.

"He doesn't come out of the game," Mrs. Mason said recently.
"He scored 49 points Saturday night. It's a miracle. It's an
absolute miracle. Am I certain he's healed? Nope."

That's probably wise, because a POTS recovery takes a long
time, and patients may never be 100 percent healthy again.

"They get better and better ... not as rapidly as they would
like," said Dr. Robertson. "I would say that half the patients
need no medications five years after they present. [The other
half] may need some."

Pohla Smith: psmith@post-gazette.com or
412-263-1228.

First published on January 30, 2012 at 12:00 am

Read the original:
Nausea, dizziness, weight loss, headaches, vomiting: These symptoms sometimes add up to POTS

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