by Dr. Margaret Aranda
To understand either dysautonomia or POTS (postural
orthostatic tachycardia syndrome), one needs to know that these are disorders
of the Autonomic Nervous System (ANS). The ANS automatically performs
many functions that you don't have to think about. This includes things like:
* The digestion of your food
* Your blood pressure
* Your heart rate
* Keeping blood going to your brain
whenever you stand up
* Telling you when your urinary
bladder is full, and when you need to urinate
* Holding in your stool until you can
find a restroom
* The erection of your penis
With the many different types of dysautonomias, of
which orthostatic hypotension and POTS are just two types, the primary
complaint is "almost passing out" (i.e., pre-syncope) or
"passing out" (syncope). One feels a typical 'headrush' but it can be
quite profound, as if someone is pulling one's hair down to the ground. It is
typical for a patient to undergo a 'gray-out', and retreat to a bed
immediately. Many of the patients are young females who would much rather trade
in their disease for a pair of high heels and go dancing. Yet it is a diagnosis
that is frustrating to the doctors, who are usually quite stumped, and who are
unable to come up with an ICD Code and a diagnosis. Some simply tell the woman,
"There's nothing wrong with you." Some blame it on hormones, on
stress, or on 'PTSD'. Some call us a 'malingerer' to our faces, because we Look
Good.
(Shhhh! We look good while we are laying in bed!
It's that little thing called Gravity that bothers us. We stand up ~ we faint.)
The definitive diagnosis is the gold standard Tilt Table Test (TTT), where one
gets velcroed to a Herman the Munster table, then gradually tilted upwards
until one passes out. I passed out for 22 sec. So, I was one of the lucky ones
that got a diagnosis. And it only took 6 months, 30 doctors, and 20
hospitalizations. The doctors wanted to send me to a nursing home, and I think
they thought I would just die. I said the magic words, "You don't even
have a diagnosis." And that saved me. If I wasn't a doctor, I would not
have known the 'magic words' to say.
The treatment plan includes noninvasive devices
such as Jobst stockings (20-30 mmHg pressure), Spanx(R) from abdomen to lower
thigh, midodrine alpha-1 agonist to push the blood pressure up, fluorinef
mineralosteroid to help retain salt, which helps retain water, and a high salt
diet. I lived on an iv for 3 1/2 years to get fluid 60 ml/hr, and I
weaned myself off (with my doctor's permission) by going down 1 cc every 2 days
and increasing my oral intake). I still go to the ER sometimes for 1 liter of
Normal Saline iv fluid. My Caregivers say it turns me into a "completely
different person." I'm not sure if that's an insult or a compliment ;-),
but I do feel lots better with iv fluid.
I can sit up for about 2 hours at a time, I can
walk one flight of stairs at home where I can hold on to both sides, and we
have wheelchair ramps at every door entrance to the house. I can walk a short
distance, usually holding on to someone, because of the brain injury and my
imbalance when I walk. I'm glad I met so many wonderful people after having
this horrible disease, and now I hope to do all that I can to meet the
challenge that lies before us: to make things better for the next generation.
And sure, it's Women Helping Women. There is a gap
in Health Care for us. We need to catch up. That's what the Medi-Basket(TM) is
for: Keeping you In the Community and Out of the ER or the Hospital. Because
virtually all of us learn to hate the ER. We know. We've been there.
Medical Disclaimer: Not meant as medical advice, treatment, or cure for any
one individual patient. Before making any changes to your nutrition,
supplement, or medication, check with your doctor first. Your doctor may want
to evaluate you in person, so that (s)he can track your changes as you move on
to a healthier lifestyle.
REFERENCES:
1.
http://www.ncbi.nlm.nih.gov/books/NBK400/
2.
http://en.wikipedia.org/wiki/Dysautonomia
3.
http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm
4.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/
5.
http://www.ncbi.nlm.nih.gov/pubmed/23122672
6. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669599/
7.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361090/
8.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3295536/
**** FREE Medical Article Blogs ****
Contact Information:
Aranda MD Enterprises, LLC
26500-102 Agoura Road
Suite 656
Calabasas, CA 91302
www.MyPerseverance.com
Copyright (c) 2013 Aranda MD Enterprises, LLC. All rights reserved.
