I am 49 years old. I was diagnosed with a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (P.O.T.S) almost four years ago.
P.O.T.S is a syndrome that takes your life from you, not by death, but by the limitations it causes. Patients with P.O.T.S get brain fog so badly that at times you can’t function at all. Sometimes my children even have to complete my thoughts because I am unable to get them from my head to my mouth.
I have days on end that I am so dizzy I can’t get out of bed, and even laying down I still feel so dizzy I can’t open my eyes. The simple things we all take for granted– things like grocery shopping– have become huge challenges for me.
I seldom have the energy to go to the store these days, and even less often do I feel stable enough to drive. Florescent lights effect me in a very bad way, they cause me to get dizzy and faint.
P.O.T.S can cause a myriad of bizarre symptoms that stem from poor circulation. My blood pressure often goes so low it is undetectable, and my heart rate ranges between 25 beats a minute to 240. Just being on my feet longer than a minute or two makes my heart rate go up and my blood pressure bottom out.
Since P.O.T.S is such a rare disease, few doctors have even heard of it. Some have even treated me like a hypochondriac. I have days when I feel normal and healthy and think– are they right? Is it just me making this up?
It seems that many people without P.O.T.S can’t understand what it’s like to have so many different issues that show up unexpectedly, at any given moment. I hear on a regular basis that I need to “just try to get a job or exercise….” P.O.T.S was only formalized as a real medical condition in 1993, so to date, there is little research on the disease and even fewer treatment options.
Unfortunately, in my case, I also have two virus’s that cause chronic fatigue syndrome, and I am learning that CFS is also a common factor in people with P.O.T.S. Because P.O.T.S affects the autonomic nervous system and my circulation is so limited, I’ve experienced issues with multiple organs. I have Chronic Non Alcoholic Fatty Liver Disease, IBS Irritable Bowel Syndrome, Diabetes and possibly Pancreatitis; my Electrophysiologist recently informed me that people with POTS are susceptible to kidney failure because of the poor blood flow.
The best advice I can give someone who has been recently diagnosed with POTS is to never take no for an answer. Few doctors know anything about P.O.T.S, so do not let them treat you as if your making things up. Learn all you can about P.O.T.S and don’t let the medical profession push you around. My greatest goal is to get P.O.T.S recognized by doctors and disability. This is a very debilitating condition and needs to be accepted as one. Patients with P.O.T.S lose a lot to this disease, and we need to be able to maintain our dignity. The next step I’m planning on taking to improve my condition is to join the YMCA and do water aerobics as recommended by my Cardiologist.