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.
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