How many people have heard of this? Im
guessing none out there on this forum. I
am 14 years old and I am currently living
with a condition called pots, postural
orthostatic tachycardia syndrome. This is
a rare illness that most people become
diagnosed with after a severe virus
flu/mono/strep and others. We dont know
anything about it yet and it was just
recently discovered in the late 1990's. I
was lucky and got diagnosed fast, march
1st 2004 to be exact, for actually only
having it without knowing for 6 months. I
didnt know where to post this becuase it
can be many things, nausea
disorder/headaches/hypotension but I chose
neurological disorders because thats what
this is classified as. The cardiologists
we see say that the nervous system is not
doing its job so we end up feeling certain
symptoms. The symptoms that are possible
are extreme nausea, vomiting, migraine,
hypotension, tremors, seizures, passing
out, dizzyness, palpatations, unable to
concentrate, paleness/modeling, weakness,
appitite loss, joint pain, insomnia, and
many others. Mine include most of these
throughout the day and cuts me off from
school,friends,sports, and any other
activity.. Doctors say that the virally
infected ones (me+many others) will get
better. But the familial disorders wont.
Familial are usually within infants and
are there when the child is born. Well I
just wanted to see if anyone would look at
this and please try and get this out to
other people or other medical sites for an
awareness kind of campeign? I dont
exactly know how but I just thought might
as well post it where some people will see
it.. The website explaining more on what
kids like us have (currently being
diagnosed newly every month and probably
only about 2000 diagnosed in the country)
is www.Dynakids.Org.
If you go to events then to watch short
clip of throwing seeds then you will see
me. Im the one in the gray shirt that at
the end flings his sleeve around because
the little rainbow sprinkles (seeds of
happiness) got down my shirt. If you
discover any sponsors willing to help us
or anything that can get the word out to
mass amounts of people please contact the
founder of dyna and say that tim referred
you to them. Thanks and I hope everyone
has a great day
tim
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harmony58
New User, Becoming EHEALTHy
Joined: 06 Jan 2005 Posts: 10 Location: South
Pots - Yes This Can Be Part of Neurological Disorders Posted: 01-25-05 14:01pm
Tim,
you sound very informed. And being
informed is often one of the best things
you can do to make good decisions for
yourself and your health.
This is an appropriate place to post.
There are neurological disorders where
part of the clinical pattern of specific
symptoms and comorbid illness include
autonomic manifestations such as pots and
oi.
Although not the exact same thing as pots,
as noted in the quote below, orthostatic
intolerance was diagnosed by my
cardiologist, as part of my neurological
disorder by using a tilt test.
"...Typically, this form of syncope is not
posturally induced but occurs in all
positions. While most children and
adolescents with syncope or orthostatic
intolerance do not have cardiac disease,
our first task is to rule out heart
disease.
Therefore a cardiac examination along with
pertinent laboratory screening tests are
often required and may include
electrocardiography, echocardiography
(cardiac ultrasound) to rule out
structural heart disease, and event
monitoring using transtelephonic devices
to rule out important arrhythmias which
often are the immediate precipitant for
cardiac syncope.
In addition a good neurologic examiniation
is important and may also include some
tests..."
this site is excellent. They even have
pictures of head up tilt testing equipment
so you can see what you are getting
into!
In my particular case, my doctor
prescribed midodrine to control my
symptoms. I understand what you are
experiencing in part and it does impact
your life and your quality of life in many
ways. To be more specific, it really,
really sucks!
I Was Also Diagnosed With Pots Posted: 01-30-05 12:13pm
I was diagnosed back in december 2004 by
the mayo clinic with pots,
ehlers-danlos(connective tisseue
disease)2003, herpetic encephalitis(born
with chicken pox)1972, and also a handful
of heart issues. They are unsure if the
pots is related to the ehlers-danlos or
something else. I had autonomic testing
done, and only showed minor problems.
It's something i've always noticed i've
had, but never really said anything. I
honestly think it's related to the
connective tissue disease, because of the
laxity of the collagen tissue with
surrounds every major organ. If you are
suspect to one these coonective tissue
disorders, I would reccoend the mayo
clinics in the us.
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Goeagles
New User, Becoming EHEALTHy
Joined: 17 Jan 2005 Posts: 3 Location: Maryland
Posted: 01-30-05 17:26pm
Yes I was diagnosed in mayo clinic. Well
basically a doctor from mayo. They set me
up with medicines and certain lifestyles
to help me.
Tim
Department of pediatrics, center for
hereditary eye diseases, wilmer eye
institute, johns hopkins university school
of medicine, baltimore, maryland, usa.
Objective: to report chronic fatigue
syndrome (cfs) associated with both
ehlers-danlos syndrome (eds) and
orthostatic intolerance.
Study design: case series of adolescents
referred to a tertiary clinic for the
evaluation of cfs. All subjects had
2-dimensional echocardiography, tests of
orthostatic tolerance, and examinations by
both a geneticist and an ophthalmologist.
Results: twelve patients (11 female),
median age 15.5 years, met diagnostic
criteria for cfs and eds, and all had
either postural tachycardia or neurally
mediated hypotension in response to
orthostatic stress. Six had
classical-type eds and 6 had
hypermobile-type eds.
Conclusions: among patients with cfs and
orthostatic intolerance, a subset also has
eds. We propose that the occurrence of
these syndromes together can be attributed
to the abnormal connective tissue in
dependent blood vessels of those with eds,
which permits veins to distend excessively
in response to ordinary hydrostatic
pressures. This in turn leads to
increased venous pooling and its
hemodynamic and symptomatic consequences.
These observations suggest that a careful
search for hypermobility and connective
tissue abnormalities should be part of the
evaluation of patients with cfs and
orthostatic intolerance syndromes.
Pmid: 10518084 [pubmed - indexed for
medline]
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cattale
New User, Becoming EHEALTHy
Joined: 30 Jan 2005 Posts: 6 Location: Tampa
Goeagles For You Posted: 01-31-05 10:16am
When did you start noticing symptoms that
alarmed you and/or your family?
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BBpots96
New User, Becoming EHEALTHy
Joined: 21 Mar 2005 Posts: 2 Location: Amherst, New York
Pots Posted: 03-21-05 23:29pm
I began with symptoms of pots following a
car accident in nov. 1996. My symptoms
became progressively worse. I have bee on
disability since june 2004. This is the
second time since 1999 that I have been on
long term disability. My cardiologist has
adjusted my meds again and I am keeping
the faith that my health will improve
soon.... To tim... Have you heard of Dr.
Blair grubb?? He is a national pediatric
pots specialist in toledo, ohio. He may
be able to help you if you have not
already met him. Please email me if you
would like more information at bludov55@ao
l.Com or bludov67@
yahoo.Com.
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zcheck
New User, Becoming EHEALTHy
Joined: 23 Jul 2005 Posts: 1 Location: mi
Hey Posted: 07-23-05 23:01pm
I know this is kind of old but I just
found this website.
I was dignosed last year end of aug. By
Dr. Blair grubb at mco well muo. They
switched their name from college to
university. I never really understood why
people have pots or anything. I was doing
a search and I would like to talk to
others that have it try to understand it
more...
Please contact me...
(moondancer_2007@hotmail.Com)
